Adoption and Family (9)
Window Pain
9.22.2021
I’ve been packing my days full of activity and opportunities that I haven’t been able to experience while Jake was living at home. Not a complaint, just a fact. Raising a child with Autism demands your full attention and round the clock care.
When Jake was placed residentially, about 2 years ago now, the door of police-trainings closed and a fuzzy, yet, freer view appeared in the next open window. While we were riding the wave of teaching and trainings, our lives sort of morphed into each other. I was lost in him and he was attached to my hip. It’s common for this to happen with kids on the spectrum. They find their “safe people” and learn to command every ounce of their attention.
His residential school placement has afforded us an opportunity to live and thrive, simultaneously though separately. Wow… this is what living is like!!!
There was a time when I wondered what my life would look like without Jake? What does my life look like with air in my lungs and the ability to actually rest at night? What potential does my own life hold? How do I change my identity from just “Jake’s mom”, “The police ambassador’s mom” and earn some credibility on my own?
The 17 years (to the day) Jake was in our home, we were “on duty” 24/7. Sleep was scarce, we were in constant motion, safety was fleeting and my time was all his. Parents of kids like Jake, I see you. Your wants absolutely take a back seat to your child’s needs. I know what it’s like to struggle to find caregivers and staff so you can go away for even an hour. I also know what it’s like to “not” find those caregivers and staff you can trust. We have been blessed.
While my heart aches with him being so far, I have life again. Through this recovery and healing process, I’ve gotten to learn how to live for me… but is it limited time only?
I have been able to leave my house and reignite friendships where I can be the giver instead of the taker. Helping other families navigate and survive their own “Jakes” is a joy and a privilege afforded to me with Jake’s safe absence. I will be forever indebted to his residential team for giving our family life.
Many ask, where I find the energy to do so many things? My energy is a mix of Divine intervention, determination to “find myself” as just Jennie and seeing my window of opportunity inching closed. I am a realist. While I am aware of the excellent services offered in our state and county, the adult world has the potential put me right back on duty. Jake is extremely complex and literally speaks his own language. He demands predictable perfection of his staff in order to prevent his anxiety from taking over. That is VERY hard to find.
Does it sound selfish that I’m fearing my freedom and life as I know it now? I want to keep the joy I’ve found inside myself. I’ve been searching a long time!
How can I be so grateful for life and fearful at the same time? How do I fit all my life goals into the years Jake is away at school? If I take on more professional responsibility now, will it all disappear when I’m back “on duty?”
I just needed to get this off my chest. It has been weighing heavily lately, as every visit starts with, “Wow, I only have X more years left!”
Thanks for listening to my brain dump!
Lost and Found
2.6.2021
(Yes, it's been more than a year since I last wrote, life has been something!)
During 2020, I've developed a new habit of more reading and growing my brain. I'm ravaging books about a variety of topics, autism included, however I haven't seen anyone writing about when your child is forced to leave the home for safety reasons. I scour and scour the internet in search of a way to manage these big feelings. I am making it up as I go along, relying on prayer, friends and a few select parents. Thank God for my mentor, Eustacia!
There are many different schools of thought on how to justify this life change in one's brain. I choose to rely on friends who have been there or are there, but very few of us actually get membership into this very exclusive club. A club where conversations consisting of only guttural moans, tears and choking on snot can be enough. Sometimes its a one word text and we cry for each other. We fight for each other. We defend one another's kids. We love one another and we ALWAYS take their call. Sometimes, only one person on the phone talks while the other sobs. It's ok and normal.
It is not all sad, but the sad exists with the uncertainty and loss. We go through an entirely unique grieving process; no I CANNOT live without my child under my roof, but I may NOT live if my child is under my roof, no one loves him like we do, no one will hug him everyday, who will he go to when he's scared, in order to save all of our, lives we must let go.
Our babies (developmentally), still not adults, go to live with strangers that we must trust. We have no choice. We cannot be 24/7 on duty, living in paralyzing fear for our lives, 9-1-1 already dialed, still trying to keep a job and be kind & loving while showing no emotions.
If I'm being totally honest, feelings of inadequacy flow through my veins like all the good stuff that's supposed to be there. The nutrients, the oxygen, the vitamins and waves of "why wasn't I enough." I'm not super human, I'm extremely emotional, grew up as my mother's parent starting in my teens... so there's not a ton of confidence in that parenting category. No real role models, so yeah I still struggle. It drives Chris and close friends crazy, because somehow they see me differently. I'm working on overcoming this, but it's deeply engrained.
We are beginning to feel like we've lost our "baby" and found ourselves again. It's difficult for me to write this. I see the struggles of my fellow warrior families, especially now, I help as many as I can fueled by loss, guilt and following pandemic precautions. If Jake was home during this pandemic, there's a very good chance I would not be. We realize that and it fuels me to keep going. His anxiety is crippling and his fight/flight/freeze response is strong. At a mere glance, he could be triggered, devastated and dangerous. His residential placement saved our family. Awake and available staff 24/7.
When Jake left, I knew I needed to stay busy. Downtime is not my friend and is an unavoidable opportunity to get "down". The slope is slippery and the valley is deep and dark. I made a promise to work on myself. Repair my heart, head and body. Picking three areas to work on was easy; faith, flute and fitness, to build me up. Chris and I have found our fun again. Even though we recognize we are still in recovery, we can laugh and breathe, again. The fear has subsided, mostly. PTSD remains and likely will.
For me, it's my body's automatic stress response. The stomach acid that begins flooding in when I know Jake is coming home on break. I start second guessing, preparing and consider resuming my anxiety meds. For Chris, it is likely the energy given towards being vulnerable, positive and patient. My shoulders creep up while his slowly drop. My fuse shortens, as everything has to be just right. The schedule must be kept, no surprises, the food must be the familiar, my responses and words must be slow, calm and carefully chosen. Like, every word must be thought about and every possible reaction to the word must be weighed. Chris and I go into our "tag-team" mentality. He sees me stressing and stammering and tags in. Even our weekly phone calls with Jake can trigger me. Every call, still teaches me something new and challenging.
We will dance the dance of life as usual and will be successful and purposeful. I believe our family is able to help others coming up behind us, as we've virtually lived and seen just about everything.
While Jake remains away and thriving, we will recover fully and find ourselves. We see this as an opportunity to strengthen our relationship, plan for the future and establish Jake's next steps. It's a heart fulfilling and heart breaking reprieve at parenting. Without it, we wouldn't be here, intact anyway, and Jake's potential would be robbed from him. He is learning and growing at record pace now! Up several grade levels academically and socially/emotionally clearing hurdles of remarkable heights.
So thank you to all the friends who let me steal your kids to fill up my heart with kid snuggles and love.
Thank God for sustaining me through the hardest losses in life (a sister, a mom, and some friends)... these last few years were rough.
Last but not least, thank you to Chris for being my loving and logical rock!
Jakey comes home next weekend! Let the planning begin!
9.22.2021
I’ve been packing my days full of activity and opportunities that I haven’t been able to experience while Jake was living at home. Not a complaint, just a fact. Raising a child with Autism demands your full attention and round the clock care.
When Jake was placed residentially, about 2 years ago now, the door of police-trainings closed and a fuzzy, yet, freer view appeared in the next open window. While we were riding the wave of teaching and trainings, our lives sort of morphed into each other. I was lost in him and he was attached to my hip. It’s common for this to happen with kids on the spectrum. They find their “safe people” and learn to command every ounce of their attention.
His residential school placement has afforded us an opportunity to live and thrive, simultaneously though separately. Wow… this is what living is like!!!
There was a time when I wondered what my life would look like without Jake? What does my life look like with air in my lungs and the ability to actually rest at night? What potential does my own life hold? How do I change my identity from just “Jake’s mom”, “The police ambassador’s mom” and earn some credibility on my own?
The 17 years (to the day) Jake was in our home, we were “on duty” 24/7. Sleep was scarce, we were in constant motion, safety was fleeting and my time was all his. Parents of kids like Jake, I see you. Your wants absolutely take a back seat to your child’s needs. I know what it’s like to struggle to find caregivers and staff so you can go away for even an hour. I also know what it’s like to “not” find those caregivers and staff you can trust. We have been blessed.
While my heart aches with him being so far, I have life again. Through this recovery and healing process, I’ve gotten to learn how to live for me… but is it limited time only?
I have been able to leave my house and reignite friendships where I can be the giver instead of the taker. Helping other families navigate and survive their own “Jakes” is a joy and a privilege afforded to me with Jake’s safe absence. I will be forever indebted to his residential team for giving our family life.
Many ask, where I find the energy to do so many things? My energy is a mix of Divine intervention, determination to “find myself” as just Jennie and seeing my window of opportunity inching closed. I am a realist. While I am aware of the excellent services offered in our state and county, the adult world has the potential put me right back on duty. Jake is extremely complex and literally speaks his own language. He demands predictable perfection of his staff in order to prevent his anxiety from taking over. That is VERY hard to find.
Does it sound selfish that I’m fearing my freedom and life as I know it now? I want to keep the joy I’ve found inside myself. I’ve been searching a long time!
How can I be so grateful for life and fearful at the same time? How do I fit all my life goals into the years Jake is away at school? If I take on more professional responsibility now, will it all disappear when I’m back “on duty?”
I just needed to get this off my chest. It has been weighing heavily lately, as every visit starts with, “Wow, I only have X more years left!”
Thanks for listening to my brain dump!
Lost and Found
2.6.2021
(Yes, it's been more than a year since I last wrote, life has been something!)
During 2020, I've developed a new habit of more reading and growing my brain. I'm ravaging books about a variety of topics, autism included, however I haven't seen anyone writing about when your child is forced to leave the home for safety reasons. I scour and scour the internet in search of a way to manage these big feelings. I am making it up as I go along, relying on prayer, friends and a few select parents. Thank God for my mentor, Eustacia!
There are many different schools of thought on how to justify this life change in one's brain. I choose to rely on friends who have been there or are there, but very few of us actually get membership into this very exclusive club. A club where conversations consisting of only guttural moans, tears and choking on snot can be enough. Sometimes its a one word text and we cry for each other. We fight for each other. We defend one another's kids. We love one another and we ALWAYS take their call. Sometimes, only one person on the phone talks while the other sobs. It's ok and normal.
It is not all sad, but the sad exists with the uncertainty and loss. We go through an entirely unique grieving process; no I CANNOT live without my child under my roof, but I may NOT live if my child is under my roof, no one loves him like we do, no one will hug him everyday, who will he go to when he's scared, in order to save all of our, lives we must let go.
Our babies (developmentally), still not adults, go to live with strangers that we must trust. We have no choice. We cannot be 24/7 on duty, living in paralyzing fear for our lives, 9-1-1 already dialed, still trying to keep a job and be kind & loving while showing no emotions.
If I'm being totally honest, feelings of inadequacy flow through my veins like all the good stuff that's supposed to be there. The nutrients, the oxygen, the vitamins and waves of "why wasn't I enough." I'm not super human, I'm extremely emotional, grew up as my mother's parent starting in my teens... so there's not a ton of confidence in that parenting category. No real role models, so yeah I still struggle. It drives Chris and close friends crazy, because somehow they see me differently. I'm working on overcoming this, but it's deeply engrained.
We are beginning to feel like we've lost our "baby" and found ourselves again. It's difficult for me to write this. I see the struggles of my fellow warrior families, especially now, I help as many as I can fueled by loss, guilt and following pandemic precautions. If Jake was home during this pandemic, there's a very good chance I would not be. We realize that and it fuels me to keep going. His anxiety is crippling and his fight/flight/freeze response is strong. At a mere glance, he could be triggered, devastated and dangerous. His residential placement saved our family. Awake and available staff 24/7.
When Jake left, I knew I needed to stay busy. Downtime is not my friend and is an unavoidable opportunity to get "down". The slope is slippery and the valley is deep and dark. I made a promise to work on myself. Repair my heart, head and body. Picking three areas to work on was easy; faith, flute and fitness, to build me up. Chris and I have found our fun again. Even though we recognize we are still in recovery, we can laugh and breathe, again. The fear has subsided, mostly. PTSD remains and likely will.
For me, it's my body's automatic stress response. The stomach acid that begins flooding in when I know Jake is coming home on break. I start second guessing, preparing and consider resuming my anxiety meds. For Chris, it is likely the energy given towards being vulnerable, positive and patient. My shoulders creep up while his slowly drop. My fuse shortens, as everything has to be just right. The schedule must be kept, no surprises, the food must be the familiar, my responses and words must be slow, calm and carefully chosen. Like, every word must be thought about and every possible reaction to the word must be weighed. Chris and I go into our "tag-team" mentality. He sees me stressing and stammering and tags in. Even our weekly phone calls with Jake can trigger me. Every call, still teaches me something new and challenging.
We will dance the dance of life as usual and will be successful and purposeful. I believe our family is able to help others coming up behind us, as we've virtually lived and seen just about everything.
While Jake remains away and thriving, we will recover fully and find ourselves. We see this as an opportunity to strengthen our relationship, plan for the future and establish Jake's next steps. It's a heart fulfilling and heart breaking reprieve at parenting. Without it, we wouldn't be here, intact anyway, and Jake's potential would be robbed from him. He is learning and growing at record pace now! Up several grade levels academically and socially/emotionally clearing hurdles of remarkable heights.
So thank you to all the friends who let me steal your kids to fill up my heart with kid snuggles and love.
Thank God for sustaining me through the hardest losses in life (a sister, a mom, and some friends)... these last few years were rough.
Last but not least, thank you to Chris for being my loving and logical rock!
Jakey comes home next weekend! Let the planning begin!
Everyone Has a Line
9.1.19
I remember the question with piercing clarity from warrior moms ahead of me on his journey. Those around the bend know more, have lived more and are wise. I am blessed to know many.
We were having coffee and I was exhaustedly going through the laundry list of dangerous and escalating behaviors Jake was exhibiting more frequently, as he was venturing through the pot-holed path of puberty.
"Where is your line?"
Silence.
I was aghast. I knew what was meant, I heard a similar question from my sister & warrior mom, just days earlier. The mere preposterousity of the question took my breath away then as much as the answer brings tears now.
I recall answering, "I have no idea. I can't even imagine being without my Jake." My heart.
My friend quickly said, "Well sending our son to residential school was the best move I ever made." She went on to explain how he thrived, she got her life back, her abilities and desire to do her job better and have more capacity for things she enjoyed. Frankly, at that moment, I couldn't imagine having that type of freedom again, either.
Heading home that afternoon I reflected on the question sticking in my side like a thorn from a budding rose bush. Sharp, painful, yet necessary to protect the beauty on its branches. What IS it gonna take to save my life, his life and our family? Tears started streaming down my cheeks and I was instantly nauseous. In my heart, I knew the line was close...
How many pairs of sticky-bottom hospital socks will we collect?
How much blood needs to be spilled?
How many times will I puke from crying?
How many tables and furniture need to be smashed?
How many dollars will we pay to repair holes in our drywall on every floor of our house?
What type of parents will we be if we send our child, that we waited so many years for, away, to be with strangers to finish raising?
My line happened on a busy street in DC! The moment when Jake jumped out of our moving car in the middle of rush hour? We had trained ourselves to never raise our voices with Jake... it has always backfired and he never "hears us" then anyway. So when I screeched, "GET YOUR ASS BACK IN THIS CAR!" we both knew, that was the line. He was shaking. I was crying.
His behaviors had been escalating over the past two years. Chris was nervous to go to work and leave me alone with him. When Jake, raging with teenage hormones and confusion, snapped, no one was safe. I walked the house on eggshells, afraid to spark an argument or say something unexpected and scary to Jake.
Our beautiful blue family came to our rescue again, and brought Jake to the emergency room. He had stabbed himself multiple times in the car, after I yelled. The emergency petition was filled out, three pages of supplemental information, hand-written by our training partners and their supervisor. For that I will never be able to repay them. All I had to do was sign...
Tears...
Sweat.
The nurse holding me and patting my back.
Visions of us signing his adoption papers so long ago with happy tears.
Thoughts of his abandonment fears.
Fears of separation.
Sounds of him begging us to find him 24/7 help.
Scribble...
Signed.
He was not safe to come home.
The stream of visitors started and continued throughout Jake's 3 days in the local hospital... pediatric ER... "bed assignment" was written on his wall next to the name of the "safety sitter" and his nurse and staff. The social workers were thrilled they found a place for Jake at the premiere psych hospital in the state, "even an all boy unit." NOT the Autism unit... the Adolescent Male Unit. I didn't know what to expect from that experience but that trauma is for another blog.
Jake's innocence is gone. He was changed there.
We had started the process for residential placement a few weeks before this last incident, but were not yet accepted, initially. Jake is a weird mix of paralyzing anxiety, acute self awareness, intelligence, and autism so he doesn't really "fit" anywhere perfectly. I am by no means implying ANY of our kids fit, for that matter.
The wheels were in motion, and I struggled to get my head around being without Jake. Seeing all our friends' kids leave the nest for college, marriages and professional jobs was something I never imagined would happen to us. That took some work and resignation on our part. Always assuming Jake, the renowned Police Ambassador, would soar to greatness under our protective wings. We were prepared for Jake to stay with us forever.
It has taken me weeks now to fully accept our new and looming empty-nest reality.
Our Super Hero, with all his gifts, accolades, state citations and national television coverage needs more help than we can provide to navigate these difficult teenage years. He needs structure, intensive support and guidance at the hint of any new opportunity or experience. His anxiety is overwhelming and rage inducing.
Of course, my brain knows what he needs but my heart breaks when I go to bed and imagine his room empty.
When I think of no one saying, "Good morning ummah, I'm going to vacuum my room!"
When I'm down, I still question "Did we do enough? What did we miss? Could we have done more for him? Did I miss a clue or a sign he was giving us?" my heart asks.
When I'm logical, my head knows we have given him more amazing experiences than most people see in a lifetime. He has earned opportunities to speak with local, state, and international autism experts and political leaders. He is an energetic and compassionate advocate who teaches as he travels and thousands of law enforcement are smarter! He is unstoppable.
So many people know how close Jake and I are and have offered so much advice over the last few weeks. While we are appreciative, this is still by far the hardest decision we've ever had to make. We will be ok... He will be ok... Our family will change... I am forcing myself to see this as Chris always has, an opportunity for Jake to soar. He will learn independence, leadership and hopefully settle enough to actually learn some academics.
Praying he has a good foundation to fall back on.
Always believing that God has special plans for Jakey, He has opened this pathway for us. His next school is peaceful, quiet and orderly. I don't think its a mistake that it has monastic qualities that bring calmness to Jake. St. Benedict medal is believed to ward off spiritual and physical dangers, especially those related to evil, poison and temptation... exactly what we need... at exactly the time we need it, not anything according to our plan!!
I give this up to You! I must trust the path.
I'll end here and leave this for all the families coming up behind us. Think about what your line looks like and what you will do when your loved one crosses.
Never hesitate to reach out to us either. We are learning and paving the way for you.
9.1.19
I remember the question with piercing clarity from warrior moms ahead of me on his journey. Those around the bend know more, have lived more and are wise. I am blessed to know many.
We were having coffee and I was exhaustedly going through the laundry list of dangerous and escalating behaviors Jake was exhibiting more frequently, as he was venturing through the pot-holed path of puberty.
"Where is your line?"
Silence.
I was aghast. I knew what was meant, I heard a similar question from my sister & warrior mom, just days earlier. The mere preposterousity of the question took my breath away then as much as the answer brings tears now.
I recall answering, "I have no idea. I can't even imagine being without my Jake." My heart.
My friend quickly said, "Well sending our son to residential school was the best move I ever made." She went on to explain how he thrived, she got her life back, her abilities and desire to do her job better and have more capacity for things she enjoyed. Frankly, at that moment, I couldn't imagine having that type of freedom again, either.
Heading home that afternoon I reflected on the question sticking in my side like a thorn from a budding rose bush. Sharp, painful, yet necessary to protect the beauty on its branches. What IS it gonna take to save my life, his life and our family? Tears started streaming down my cheeks and I was instantly nauseous. In my heart, I knew the line was close...
How many pairs of sticky-bottom hospital socks will we collect?
How much blood needs to be spilled?
How many times will I puke from crying?
How many tables and furniture need to be smashed?
How many dollars will we pay to repair holes in our drywall on every floor of our house?
What type of parents will we be if we send our child, that we waited so many years for, away, to be with strangers to finish raising?
My line happened on a busy street in DC! The moment when Jake jumped out of our moving car in the middle of rush hour? We had trained ourselves to never raise our voices with Jake... it has always backfired and he never "hears us" then anyway. So when I screeched, "GET YOUR ASS BACK IN THIS CAR!" we both knew, that was the line. He was shaking. I was crying.
His behaviors had been escalating over the past two years. Chris was nervous to go to work and leave me alone with him. When Jake, raging with teenage hormones and confusion, snapped, no one was safe. I walked the house on eggshells, afraid to spark an argument or say something unexpected and scary to Jake.
Our beautiful blue family came to our rescue again, and brought Jake to the emergency room. He had stabbed himself multiple times in the car, after I yelled. The emergency petition was filled out, three pages of supplemental information, hand-written by our training partners and their supervisor. For that I will never be able to repay them. All I had to do was sign...
Tears...
Sweat.
The nurse holding me and patting my back.
Visions of us signing his adoption papers so long ago with happy tears.
Thoughts of his abandonment fears.
Fears of separation.
Sounds of him begging us to find him 24/7 help.
Scribble...
Signed.
He was not safe to come home.
The stream of visitors started and continued throughout Jake's 3 days in the local hospital... pediatric ER... "bed assignment" was written on his wall next to the name of the "safety sitter" and his nurse and staff. The social workers were thrilled they found a place for Jake at the premiere psych hospital in the state, "even an all boy unit." NOT the Autism unit... the Adolescent Male Unit. I didn't know what to expect from that experience but that trauma is for another blog.
Jake's innocence is gone. He was changed there.
We had started the process for residential placement a few weeks before this last incident, but were not yet accepted, initially. Jake is a weird mix of paralyzing anxiety, acute self awareness, intelligence, and autism so he doesn't really "fit" anywhere perfectly. I am by no means implying ANY of our kids fit, for that matter.
The wheels were in motion, and I struggled to get my head around being without Jake. Seeing all our friends' kids leave the nest for college, marriages and professional jobs was something I never imagined would happen to us. That took some work and resignation on our part. Always assuming Jake, the renowned Police Ambassador, would soar to greatness under our protective wings. We were prepared for Jake to stay with us forever.
It has taken me weeks now to fully accept our new and looming empty-nest reality.
Our Super Hero, with all his gifts, accolades, state citations and national television coverage needs more help than we can provide to navigate these difficult teenage years. He needs structure, intensive support and guidance at the hint of any new opportunity or experience. His anxiety is overwhelming and rage inducing.
Of course, my brain knows what he needs but my heart breaks when I go to bed and imagine his room empty.
When I think of no one saying, "Good morning ummah, I'm going to vacuum my room!"
When I'm down, I still question "Did we do enough? What did we miss? Could we have done more for him? Did I miss a clue or a sign he was giving us?" my heart asks.
When I'm logical, my head knows we have given him more amazing experiences than most people see in a lifetime. He has earned opportunities to speak with local, state, and international autism experts and political leaders. He is an energetic and compassionate advocate who teaches as he travels and thousands of law enforcement are smarter! He is unstoppable.
So many people know how close Jake and I are and have offered so much advice over the last few weeks. While we are appreciative, this is still by far the hardest decision we've ever had to make. We will be ok... He will be ok... Our family will change... I am forcing myself to see this as Chris always has, an opportunity for Jake to soar. He will learn independence, leadership and hopefully settle enough to actually learn some academics.
Praying he has a good foundation to fall back on.
Always believing that God has special plans for Jakey, He has opened this pathway for us. His next school is peaceful, quiet and orderly. I don't think its a mistake that it has monastic qualities that bring calmness to Jake. St. Benedict medal is believed to ward off spiritual and physical dangers, especially those related to evil, poison and temptation... exactly what we need... at exactly the time we need it, not anything according to our plan!!
I give this up to You! I must trust the path.
I'll end here and leave this for all the families coming up behind us. Think about what your line looks like and what you will do when your loved one crosses.
Never hesitate to reach out to us either. We are learning and paving the way for you.
Family in Blue
12/19/15
I used to be afraid of them, due to my condition of course. Born with one right foot made entirely made of solid lead, causes stress in our relationship. I whiz by, they give chase, they put on lights, I swear loudly and slow down... you know the drill. But now, things are different.
Since our minor run-in with the police and our Super Hero Jake, everything has changed. Yes, Jake was nervous when police came to our house. Yes, we were surprised and yet glad they showed up, thinking this was a great life lesson in natural consequence for Jake. No, we never expected what happened next.
Following my phone call to the Autism Outreach department to report how great the officers were with our very nervous Jake, relationships started forming. Real relationships based on respect, understanding and compassion.
Efforts for our cocky-teenage-boy to have positive interactions with police turned into the mutual admiration society. Jake was given the most amazing opportunity to speak on behalf of the Autism Community and teach police about himself and his friends. The rest is history, as they say, we now travel all over teaching police and crisis trainings and he has been recognized nationally. You know all this, but what you don't know is amazing part. The above and beyond part.
It's really hard some days raising a Super Hero and as parents we're not really allowed to have a day off. I often say, as many of my friends do as well, there's no good time to be sick and there's no way we can ever die. (i know many super hero parents are nodding their heads).
One day recently, well, I did get sick. Some crazy stress-induced vertigo landed me in the hospital emergency room, after I woke up and couldn't get out of my spinning bed. The physical symptoms were horrible but the harder part was to pretend like everything was fine in an effort not to blow Jake's mind. I was scared. Chris was concerned. Jake was terrified as I made my way down the stairs but couldn't stand to make his lunch. I sat at the kitchen table, with my head actually ON the table, which was spinning the opposite way of the table. I knew Chris had to work this day and I also knew it was my day to pick up Jake from school.
We are out here alone. All our relatives are strewn across the country so we've made a family here. It includes colleagues, neighbors, former/current co-workers, former teachers and now the police.
I didn't know who to call for help, so I called an officer friend, who works down the street and whom we all adore. She had an engagement, but reassured us another officer could pick Jake up from school. Really? A few quick texts back and forth and the ride was arranged. (I was sorta shocked.) But I knew I had to focus on myself for a moment and on getting better. (I'm not good at focusing on myself). I couldn't believe the police were going to pick Jake up from school. He'd be so happy and that would be a great distraction. Now I just had to be sure I was home by the time he was dismissed.
An empty, prompt and attentive emergency room staff made sure I was! The squad car pulled into the drive as I was on the couch and delivered our son. Jake walked in like nothing was unusual and sat near me. He was excited to ride in the front seat of a police car and reported to me this helpful officer may have the same lead-foot condition mommy suffers. (Hi Tara ;-))
Chris and I thanked and thanked her over and over again, still not believing the police had no problem picking up Jake from school. As we were talking, I mentioned that it's just really tough when immediate family is far away and our home-made family all works during the days etc. We are sort of out here all alone.
To that she said, "You're never alone, you have the police family," and went on to name our police friends by name that would help us anytime. I seriously almost burst into tears. Officers do have responsibilities to patrol communities and keep the residents safe, but really now. Picking up Jake from school, texting throughout the day and checking on me afterwards is above and beyond even the call of their duty.
We really do feel the love and support of the local police force and are so blessed. Not only do they encourage and support Jake's speaking career plan but now he wants to work for them one day because of how special they make him feel. Officers in other counties have also pledged to help us in any way they can.
Never would I have imagined that we would be part of the police family, but we are so honored we are. We hurt when they hurt, we grieve when they grieve and rejoice in their successes. I wish everyone would remember these officers are moms, dad, girlfriends, boyfriends, sisters, brothers, wives, husbands, sons and daughters. They have hearts of gold, fears like us, concern for their community and would take a bullet for any of us. They are the first people to help you in an emergency.
One day I hope Jake is wearing blue too!
12/19/15
I used to be afraid of them, due to my condition of course. Born with one right foot made entirely made of solid lead, causes stress in our relationship. I whiz by, they give chase, they put on lights, I swear loudly and slow down... you know the drill. But now, things are different.
Since our minor run-in with the police and our Super Hero Jake, everything has changed. Yes, Jake was nervous when police came to our house. Yes, we were surprised and yet glad they showed up, thinking this was a great life lesson in natural consequence for Jake. No, we never expected what happened next.
Following my phone call to the Autism Outreach department to report how great the officers were with our very nervous Jake, relationships started forming. Real relationships based on respect, understanding and compassion.
Efforts for our cocky-teenage-boy to have positive interactions with police turned into the mutual admiration society. Jake was given the most amazing opportunity to speak on behalf of the Autism Community and teach police about himself and his friends. The rest is history, as they say, we now travel all over teaching police and crisis trainings and he has been recognized nationally. You know all this, but what you don't know is amazing part. The above and beyond part.
It's really hard some days raising a Super Hero and as parents we're not really allowed to have a day off. I often say, as many of my friends do as well, there's no good time to be sick and there's no way we can ever die. (i know many super hero parents are nodding their heads).
One day recently, well, I did get sick. Some crazy stress-induced vertigo landed me in the hospital emergency room, after I woke up and couldn't get out of my spinning bed. The physical symptoms were horrible but the harder part was to pretend like everything was fine in an effort not to blow Jake's mind. I was scared. Chris was concerned. Jake was terrified as I made my way down the stairs but couldn't stand to make his lunch. I sat at the kitchen table, with my head actually ON the table, which was spinning the opposite way of the table. I knew Chris had to work this day and I also knew it was my day to pick up Jake from school.
We are out here alone. All our relatives are strewn across the country so we've made a family here. It includes colleagues, neighbors, former/current co-workers, former teachers and now the police.
I didn't know who to call for help, so I called an officer friend, who works down the street and whom we all adore. She had an engagement, but reassured us another officer could pick Jake up from school. Really? A few quick texts back and forth and the ride was arranged. (I was sorta shocked.) But I knew I had to focus on myself for a moment and on getting better. (I'm not good at focusing on myself). I couldn't believe the police were going to pick Jake up from school. He'd be so happy and that would be a great distraction. Now I just had to be sure I was home by the time he was dismissed.
An empty, prompt and attentive emergency room staff made sure I was! The squad car pulled into the drive as I was on the couch and delivered our son. Jake walked in like nothing was unusual and sat near me. He was excited to ride in the front seat of a police car and reported to me this helpful officer may have the same lead-foot condition mommy suffers. (Hi Tara ;-))
Chris and I thanked and thanked her over and over again, still not believing the police had no problem picking up Jake from school. As we were talking, I mentioned that it's just really tough when immediate family is far away and our home-made family all works during the days etc. We are sort of out here all alone.
To that she said, "You're never alone, you have the police family," and went on to name our police friends by name that would help us anytime. I seriously almost burst into tears. Officers do have responsibilities to patrol communities and keep the residents safe, but really now. Picking up Jake from school, texting throughout the day and checking on me afterwards is above and beyond even the call of their duty.
We really do feel the love and support of the local police force and are so blessed. Not only do they encourage and support Jake's speaking career plan but now he wants to work for them one day because of how special they make him feel. Officers in other counties have also pledged to help us in any way they can.
Never would I have imagined that we would be part of the police family, but we are so honored we are. We hurt when they hurt, we grieve when they grieve and rejoice in their successes. I wish everyone would remember these officers are moms, dad, girlfriends, boyfriends, sisters, brothers, wives, husbands, sons and daughters. They have hearts of gold, fears like us, concern for their community and would take a bullet for any of us. They are the first people to help you in an emergency.
One day I hope Jake is wearing blue too!
Biology on the Brakes
(1/20/2014)
The car-convo coffin strikes again.
Trapped inside.
Rolling down the road.
Barrage of questions.
Not just any questions, THOSE questions.
“Mom does my dad look like me?”
Good thing I was slowing down for the corner or I would gone into the ditch.
“Well I guess he probably does, since you don’t look at all like your birthmom.”
“Is my dad nice?”
Oh boy.
I know few details about his bio-dad and nice isn’t how I’d exactly describe him. But of course I don’t want Jake to think badly about either of his biological parents, since their gut-wrenching and brave decisions made our awesome family.
Turning into the gas station now and he says, “Does my dad look like my doll?”
He’s referring to an African American doll named, Abassi.
I’m so rattled by him using the word dad, I found myself circling the pumps twice before being clear enough to actually align my car properly at the hose.
Stop.
Park.
Start again.
Back up.
Line up.
“First, buddy. You’ve got to stop calling him ‘dad’. He is your bio-dad or African-dad but he is not your dad. He had the choice to be your dad, but chose to give you a better life. You think about that for a minute.”
Get out.
Breathe.
Slam door.
Breathe.
Run credit card.
Start gas.
Get back in car.
I didn’t think that’d be the end of it.
“So he didn’t want to have me?”
“No honey, he surely wanted you, but he had to go back to his life in Kenya, and wasn’t able to keep you.”
“So nobody wanted me?”
Kill.
Me.
Now.
To see the disappointment and sadness in his face was wrenching.
“Ugh honey… so many people wanted you.”
“Really?”
“You bet. We were just the lucky ones that won you!”
“You won me?”
“Yes. There were many people that wanted you, but your birth-mom and birth-dad heard from God and they chose us to be your family. We are all following God’s directions.”
“Really? Lots of people wanted me?”
“Absolutely!”
“Wow, you won me!”
“Yes and could you think of any more fun parents?”
“Nope. You guys are so silly and cool!” he said with a huge smile and giggle-shiver.
OMG please be over…
Pulling away from pump.
“That’s soooo cool!” with another giggle.
Poor kiddo is trying so hard to make sense of such complicated adult decisions.
Breaking my heart and filling-up my tank at the same time.
(1/20/2014)
The car-convo coffin strikes again.
Trapped inside.
Rolling down the road.
Barrage of questions.
Not just any questions, THOSE questions.
“Mom does my dad look like me?”
Good thing I was slowing down for the corner or I would gone into the ditch.
“Well I guess he probably does, since you don’t look at all like your birthmom.”
“Is my dad nice?”
Oh boy.
I know few details about his bio-dad and nice isn’t how I’d exactly describe him. But of course I don’t want Jake to think badly about either of his biological parents, since their gut-wrenching and brave decisions made our awesome family.
Turning into the gas station now and he says, “Does my dad look like my doll?”
He’s referring to an African American doll named, Abassi.
I’m so rattled by him using the word dad, I found myself circling the pumps twice before being clear enough to actually align my car properly at the hose.
Stop.
Park.
Start again.
Back up.
Line up.
“First, buddy. You’ve got to stop calling him ‘dad’. He is your bio-dad or African-dad but he is not your dad. He had the choice to be your dad, but chose to give you a better life. You think about that for a minute.”
Get out.
Breathe.
Slam door.
Breathe.
Run credit card.
Start gas.
Get back in car.
I didn’t think that’d be the end of it.
“So he didn’t want to have me?”
“No honey, he surely wanted you, but he had to go back to his life in Kenya, and wasn’t able to keep you.”
“So nobody wanted me?”
Kill.
Me.
Now.
To see the disappointment and sadness in his face was wrenching.
“Ugh honey… so many people wanted you.”
“Really?”
“You bet. We were just the lucky ones that won you!”
“You won me?”
“Yes. There were many people that wanted you, but your birth-mom and birth-dad heard from God and they chose us to be your family. We are all following God’s directions.”
“Really? Lots of people wanted me?”
“Absolutely!”
“Wow, you won me!”
“Yes and could you think of any more fun parents?”
“Nope. You guys are so silly and cool!” he said with a huge smile and giggle-shiver.
OMG please be over…
Pulling away from pump.
“That’s soooo cool!” with another giggle.
Poor kiddo is trying so hard to make sense of such complicated adult decisions.
Breaking my heart and filling-up my tank at the same time.
Reminder in the Mail
Aug 3. 2013
There goes the dream of having another child.
The pain of a second failed adoption has taken 2 years to heal from. I need to write it, purge it, and pray about it, one final time. I haven’t written about this awful loss in our lives for years because it’s raw. And no matter how much I pretend to say I’m over it, the pain is still near the surface when the reminders rear their ugly head.
Just when I think I’m doing ok and can live with the guilt and failure of being forced to say ‘no’ to a second son who was almost ours, Jake drops a bomb. It doesn’t happen often, but when it does, it slices.
“Where is the lamp, in brother’s room?”
“What’s in the closet in brother’s room?”
“Is our friend going to sleep over in brother’s room?”
“Brother’s birthday is in August.”
Two years ago, Jake nearly had a brother. He delighted in the thought of having someone to play with, fight with and torment for life and Chris and I were excited to think Jake won’t be alone his entire life.
We divided the toys, split the books, saved old clothes, and painted the bedroom Spiderman colors all for this future-son we decided to save from the foster care system. We visited him at his foster-care home out of state, made lots of phone calls and were following the rules of the complicated, draining and corrupt foster system.
Lie upon lie upon lie led to heartbreak for our entire family which still lingers inside me.
It can be a simple comment from an unknowing and innocent Jake.
The vision of a mom with two boys close in age still twinges my heart.
The longing in Jake’s eyes of another kid his age to play with him, wake up with in the morning and love him unconditionally.
The forward-thinking of our Super Hero being alone in the world without a sibling to keep his finger on him.
It was a challenge but we were up for it, we thought.
There were a few strange signs along the way: if this kid only had a diagnosis of ADHD why did he come with 8 pills a day?
If his diagnosis was that simple, why was he in an intensive therapeutic foster care home?
Does ADHD require 2 hospitalizations as an in-patient?
These things didn’t quite add up, but were able to look beyond because our desire for a family of four was bigger and stronger.
Two extended visits in our home went as well as can be expected. The boys mostly got along, our family and friends seemed supportive and he got along well with the neighbor kids. Our visits to his home were fun but emotional.
After one day the “I love yous” flowed freely from future son to us. While it sounded nice that was a huge red flag. The fact that he could attach so quickly and freely was telling on many levels. Called me momma on our first visit.
I’d correct him, “Buddy, I think you love the idea of this, but you just met us…” He’d agree.
Spending Christmas was the last test. A major holiday, lots of stimulation and Chris was leaving for a work assignment at the Winter Classic hockey tournament. The final challenge was to see if I could handle both boys alone because that’s how our lives roll.
The first 4 days of this extended visit were great: Lots of gifts, lots of friends and tons of good food. My heart was full and tears near the surface when I’d watch Jake and future brother play.
Chris departed for his trip feeling more comfortable and proud he was almost a dad of two sons.
Visions of high school football teams, Friday nights in the cold bleachers and teaching both boys how to skate filled his head as he travelled miles away.
The 5th day, Jake was in bed and I was having a heart-to-heart with our future son (10 at the time). I was surprised at how wise he was to the ways of the world yet how jaded at the same time.
We discussed life’s goals.
What he’d be when he grew up.
How he was excited to have his own room.
What he’d miss about living with his foster family.
Then he got around to Jake.
I again explained to him about Autism and he seemed to understand, but...
In one breath he said he would always be around to protect and watch out for Jake, then in the next breath detailed how he could end his life.
Yes, I said, end his life.
I don’t know how, but I was able to keep the conversation going. Probing with questions about how exactly he was planning to kill our son if he “kept getting on his nerves.”
My heart was racing as I kept peppering.
“Well then what would you do?”
“I’d just hold his neck like this for a long time…. And he’d stop and be dead.” That phrase delivered with a shoulder shrug and matter-of-fact head nod.
“Aren’t you afraid to get in trouble?”
“No. I’m only 10. I’d just go to juvy ‘til I’m 18, get out, and go find my real momma anyway. She works at the Winn Dixie in Virginia.”
I was instantly nauseous.
Part of me felt like he was just talking big to test me and see if I’d still want him. The bigger part of me was thinking, stay the F away from my son! Jake and I are not safe in this house with a 10 year old! I need Chris!!
As I hurried him off to bed, I called the social worker. No answer.
I called the Adoption Agency we were working with. No answer.
I frantically called Chris and freaked out. “I can’t do this, I can’t do this…”
I could hear the disappointment on the other end of the line, but I really knew in my heart this couldn’t work.
I failed. I failed him. I failed Chris and I failed Jake.
At my wits end, no matter how much I didn’t want to call the foster mom, I did.
She promptly asked how things were going and if everything was ok. When I told her about this conversation, she was not surprised at all. In fact, started probing about other destructive behaviors.
“Has he started hoarding food yet? Has he started the hallucinations yet? Has he put his hands on your son yet?”
I exploded. Venomous hatred flying from my lips.
“Were you ever going to tell me about these other behaviors? How can you let this child travel to another home, where there’s a special needs child, and not warn me? What are his real diagnoses, this is not ADHD? What are the 8 meds for?” I was screaming, shaking and crying all at the same time.
The foster mother listened and responded with, “Well it’s good this isn’t working out because white parents don’t having any business raising black children anyway.”
I again unleashed a fury I didn’t know I was capable of.
“I cannot believe you – we have discipline, structure and the means to meet all his needs. We have extensive behavior training and can handle the toughest of behaviors, but we needed to be told about freakin' psychosis!”
The next days were filled with emergency calls to the agency, frantic meetings with social workers trying to save this placement and sleepless nights worrying this soon-to-be-son could kill our child.
The realization that we could not accept this child, we could not save this child too, was just agonizing to endure. The social workers told me to make his last couple days with us a dream. So I did.
As Jake went to school, I took him to swimming lessons, out to lunch and to all the Smithsonian museums. I gave him the life he could have had.
He saw dinosaurs, ate the finest foods and tried to bond while my fear and anger just built the wall high and higher.
“Momma, do you still want me?”
“Momma, where will I go to school?”
“Momma, do you love me?”
I don’t know where I found the strength to come up with the answers I did or how I survived those few days, but all questions were answered the same, in mono-tone while slowly dying.
“We have to see what the future holds buddy. There’s a lot more work to be done. Of course we’d love to have you, but I don’t know if this is the best fit. I need to talk to Chris and your social worker.”
Chris has the awful task of having to fly with him back home, pretending the entire time. We could not stand the thought of crushing this child, but we also could not risk putting Jake in danger.
The guilt from deciding not to adopt this second child who was nearly ours still eats at me today. We were not the first family to reject him and the trauma of our denial likely is what’s keeping him out of the foster care system. He has not been stabilized enough to re-enter the “available for adoption system” and will likely age-out one day. I have no idea what his future holds.
I rejected him. I carry this with me almost like living with a hole in my heart. What could have been…
Most days I’m good and he doesn’t cross my mind. I can convince myself we did what we needed to do to protect our family.
But once a month, I go to the mailbox and there’s the Lego magazine addressed to him. My heart sinks, my mind wanders and soul aches for another son. A confidant for Jake, a role model and a guaranteed friend.
I’ve cancelled the subscription…
Twice…
Jake’s has been stopped.
But this painful reminder still appears in the mail of how we saved one child but lost another.
There goes the dream of having another child.
The pain of a second failed adoption has taken 2 years to heal from. I need to write it, purge it, and pray about it, one final time. I haven’t written about this awful loss in our lives for years because it’s raw. And no matter how much I pretend to say I’m over it, the pain is still near the surface when the reminders rear their ugly head.
Just when I think I’m doing ok and can live with the guilt and failure of being forced to say ‘no’ to a second son who was almost ours, Jake drops a bomb. It doesn’t happen often, but when it does, it slices.
“Where is the lamp, in brother’s room?”
“What’s in the closet in brother’s room?”
“Is our friend going to sleep over in brother’s room?”
“Brother’s birthday is in August.”
Two years ago, Jake nearly had a brother. He delighted in the thought of having someone to play with, fight with and torment for life and Chris and I were excited to think Jake won’t be alone his entire life.
We divided the toys, split the books, saved old clothes, and painted the bedroom Spiderman colors all for this future-son we decided to save from the foster care system. We visited him at his foster-care home out of state, made lots of phone calls and were following the rules of the complicated, draining and corrupt foster system.
Lie upon lie upon lie led to heartbreak for our entire family which still lingers inside me.
It can be a simple comment from an unknowing and innocent Jake.
The vision of a mom with two boys close in age still twinges my heart.
The longing in Jake’s eyes of another kid his age to play with him, wake up with in the morning and love him unconditionally.
The forward-thinking of our Super Hero being alone in the world without a sibling to keep his finger on him.
It was a challenge but we were up for it, we thought.
There were a few strange signs along the way: if this kid only had a diagnosis of ADHD why did he come with 8 pills a day?
If his diagnosis was that simple, why was he in an intensive therapeutic foster care home?
Does ADHD require 2 hospitalizations as an in-patient?
These things didn’t quite add up, but were able to look beyond because our desire for a family of four was bigger and stronger.
Two extended visits in our home went as well as can be expected. The boys mostly got along, our family and friends seemed supportive and he got along well with the neighbor kids. Our visits to his home were fun but emotional.
After one day the “I love yous” flowed freely from future son to us. While it sounded nice that was a huge red flag. The fact that he could attach so quickly and freely was telling on many levels. Called me momma on our first visit.
I’d correct him, “Buddy, I think you love the idea of this, but you just met us…” He’d agree.
Spending Christmas was the last test. A major holiday, lots of stimulation and Chris was leaving for a work assignment at the Winter Classic hockey tournament. The final challenge was to see if I could handle both boys alone because that’s how our lives roll.
The first 4 days of this extended visit were great: Lots of gifts, lots of friends and tons of good food. My heart was full and tears near the surface when I’d watch Jake and future brother play.
Chris departed for his trip feeling more comfortable and proud he was almost a dad of two sons.
Visions of high school football teams, Friday nights in the cold bleachers and teaching both boys how to skate filled his head as he travelled miles away.
The 5th day, Jake was in bed and I was having a heart-to-heart with our future son (10 at the time). I was surprised at how wise he was to the ways of the world yet how jaded at the same time.
We discussed life’s goals.
What he’d be when he grew up.
How he was excited to have his own room.
What he’d miss about living with his foster family.
Then he got around to Jake.
I again explained to him about Autism and he seemed to understand, but...
In one breath he said he would always be around to protect and watch out for Jake, then in the next breath detailed how he could end his life.
Yes, I said, end his life.
I don’t know how, but I was able to keep the conversation going. Probing with questions about how exactly he was planning to kill our son if he “kept getting on his nerves.”
My heart was racing as I kept peppering.
“Well then what would you do?”
“I’d just hold his neck like this for a long time…. And he’d stop and be dead.” That phrase delivered with a shoulder shrug and matter-of-fact head nod.
“Aren’t you afraid to get in trouble?”
“No. I’m only 10. I’d just go to juvy ‘til I’m 18, get out, and go find my real momma anyway. She works at the Winn Dixie in Virginia.”
I was instantly nauseous.
Part of me felt like he was just talking big to test me and see if I’d still want him. The bigger part of me was thinking, stay the F away from my son! Jake and I are not safe in this house with a 10 year old! I need Chris!!
As I hurried him off to bed, I called the social worker. No answer.
I called the Adoption Agency we were working with. No answer.
I frantically called Chris and freaked out. “I can’t do this, I can’t do this…”
I could hear the disappointment on the other end of the line, but I really knew in my heart this couldn’t work.
I failed. I failed him. I failed Chris and I failed Jake.
At my wits end, no matter how much I didn’t want to call the foster mom, I did.
She promptly asked how things were going and if everything was ok. When I told her about this conversation, she was not surprised at all. In fact, started probing about other destructive behaviors.
“Has he started hoarding food yet? Has he started the hallucinations yet? Has he put his hands on your son yet?”
I exploded. Venomous hatred flying from my lips.
“Were you ever going to tell me about these other behaviors? How can you let this child travel to another home, where there’s a special needs child, and not warn me? What are his real diagnoses, this is not ADHD? What are the 8 meds for?” I was screaming, shaking and crying all at the same time.
The foster mother listened and responded with, “Well it’s good this isn’t working out because white parents don’t having any business raising black children anyway.”
I again unleashed a fury I didn’t know I was capable of.
“I cannot believe you – we have discipline, structure and the means to meet all his needs. We have extensive behavior training and can handle the toughest of behaviors, but we needed to be told about freakin' psychosis!”
The next days were filled with emergency calls to the agency, frantic meetings with social workers trying to save this placement and sleepless nights worrying this soon-to-be-son could kill our child.
The realization that we could not accept this child, we could not save this child too, was just agonizing to endure. The social workers told me to make his last couple days with us a dream. So I did.
As Jake went to school, I took him to swimming lessons, out to lunch and to all the Smithsonian museums. I gave him the life he could have had.
He saw dinosaurs, ate the finest foods and tried to bond while my fear and anger just built the wall high and higher.
“Momma, do you still want me?”
“Momma, where will I go to school?”
“Momma, do you love me?”
I don’t know where I found the strength to come up with the answers I did or how I survived those few days, but all questions were answered the same, in mono-tone while slowly dying.
“We have to see what the future holds buddy. There’s a lot more work to be done. Of course we’d love to have you, but I don’t know if this is the best fit. I need to talk to Chris and your social worker.”
Chris has the awful task of having to fly with him back home, pretending the entire time. We could not stand the thought of crushing this child, but we also could not risk putting Jake in danger.
The guilt from deciding not to adopt this second child who was nearly ours still eats at me today. We were not the first family to reject him and the trauma of our denial likely is what’s keeping him out of the foster care system. He has not been stabilized enough to re-enter the “available for adoption system” and will likely age-out one day. I have no idea what his future holds.
I rejected him. I carry this with me almost like living with a hole in my heart. What could have been…
Most days I’m good and he doesn’t cross my mind. I can convince myself we did what we needed to do to protect our family.
But once a month, I go to the mailbox and there’s the Lego magazine addressed to him. My heart sinks, my mind wanders and soul aches for another son. A confidant for Jake, a role model and a guaranteed friend.
I’ve cancelled the subscription…
Twice…
Jake’s has been stopped.
But this painful reminder still appears in the mail of how we saved one child but lost another.
---------------------------------------------------------
Heavenly Heartache
February 13, 2012
I’m not going to hide it, in fact I couldn’t even if I tried. One of the biggest motivators for working my tail off for Jake is the fact that one day he’ll need to navigate this whacky world on his own.
Yep, it’s dark.
Yep, it’s scary.
But yep, it’s necessary.
Super Heroes, no matter how social, can be very lonely adults and defining life beyond school is challenging.
So the other day when Jake decided to play “20 Questions about Heaven”, I barely kept the air in my chest. I honestly don’t know how I do it, but when he starts firing really hard questions at me, I just respond matter-of-factly, without emotion, and the words just fall from my mouth.
Friday started with Jake dragging the picture of his adoption finalization day downstairs and propping it on the table in front of him while he scarfed down his cheerios and milk. I could see his brain working and started a silent prayer, please no questions today, please no questions today…. Fat chance, this is Jake we’re talking about. The child never STOPS asking questions.
Edit prayer.
Lord, give me the wisdom to answer the following barrage of questions without adding any more stress/anxiety to our lives. Trust me, that happens without me even realizing it.
“Where’s Grandpa H?” a family friend who came to court with us and is in the photo.
“He’s in heaven,” I answered flatly.
“How old is he in this picture?”
“Not sure, close to 90 I think.”
“He went to heaven before he was 100?”
In the past, when Jake was asking questions about dying and going to heaven, I told him we all go when we’re 100, in order to eliminate him stressing about us leaving him the next day. Sounds silly to some, but for a kid with anxiety disorder, totally true and totally terrifying.
So I answered, “God calls up some people a little bit early, if they’re really tired on earth.”
I wanted to suck that one back in. I’m sure it will bite me soon, because Jake knows I’m tired ALL THE TIME.
“Where’s this judge? Is he in heaven?”
“I don’t know Jake.”
“He looks younger and he told me I have to take care of you, right?”
“Yes, the judge said we have to take care of you when you’re a baby, but you need to take care of us when you’re a grown-up and we get old.”
“Oh. OK”
“What’s in heaven? Wagons? McDonalds? Super big houses? All my friends?”
Sigh, he's not stopping.
“Yes Jake. You won’t want for anything when you’re in heaven.”
Wait for it.
Wait.
For.
It.
Ready?
“When’s mommy going to heaven?”
Gulp. Tap dancing very delicately around this one… the answer could shock, scar, or cause my favorite ‘appendage’ to lose it on the spot.
“I don’t know Jake. God will call me up when he decides I’m done working on earth.”
“Grandpa H didn’t live until 100?”
See where this is going? The anxiety was instantly palpable.
“Nope.”
And the final blow.
“When mommy goes to heaven, I’m going to go too. I need to be with mommy.”
Speechless.
Inhale, barely.
Chest collapse.
Still searching for words.
No answer.
He must have seen me panting.
“Can you breathe in outer space?”
Ummm now I’m cornered.
“In heaven yes you can breathe, but if you are still living on earth and try to go to the moon, you need special equipment to help you breathe.”
“Can I breathe in my nose (huge sniff) like this when I’m in heaven?”
“Yes you can Jake, if you don’t have that nasty head cold.”
Exasperated, I needed to change the subject quick before I burst into tears as my heart split down the middle. I’ve always tried to shield Jake from the notion that he’d ever be alone in this world. But now, clearly, the thought has entered his mind. My greatest fear is now his growing fear. How scary it must be for him to have such self-awareness to know he needs mommy, yet one day may not have me.
I’m sure this isn’t the last of these incredibly deep conversations (for a 9 year old kid with autism) but he’s got to space them out a little more. Between birth-family questions, why he's brown, and going to heaven vs. hell, I can only channel brilliant answers for very short bursts of time.
“C’mon buddy, it’s 7:15, time to get dressed for school.”
Yes, all this happened before the sun even rose completely in the sky.
Super Powers?
No doubt.
Heavenly Heartache
February 13, 2012
I’m not going to hide it, in fact I couldn’t even if I tried. One of the biggest motivators for working my tail off for Jake is the fact that one day he’ll need to navigate this whacky world on his own.
Yep, it’s dark.
Yep, it’s scary.
But yep, it’s necessary.
Super Heroes, no matter how social, can be very lonely adults and defining life beyond school is challenging.
So the other day when Jake decided to play “20 Questions about Heaven”, I barely kept the air in my chest. I honestly don’t know how I do it, but when he starts firing really hard questions at me, I just respond matter-of-factly, without emotion, and the words just fall from my mouth.
Friday started with Jake dragging the picture of his adoption finalization day downstairs and propping it on the table in front of him while he scarfed down his cheerios and milk. I could see his brain working and started a silent prayer, please no questions today, please no questions today…. Fat chance, this is Jake we’re talking about. The child never STOPS asking questions.
Edit prayer.
Lord, give me the wisdom to answer the following barrage of questions without adding any more stress/anxiety to our lives. Trust me, that happens without me even realizing it.
“Where’s Grandpa H?” a family friend who came to court with us and is in the photo.
“He’s in heaven,” I answered flatly.
“How old is he in this picture?”
“Not sure, close to 90 I think.”
“He went to heaven before he was 100?”
In the past, when Jake was asking questions about dying and going to heaven, I told him we all go when we’re 100, in order to eliminate him stressing about us leaving him the next day. Sounds silly to some, but for a kid with anxiety disorder, totally true and totally terrifying.
So I answered, “God calls up some people a little bit early, if they’re really tired on earth.”
I wanted to suck that one back in. I’m sure it will bite me soon, because Jake knows I’m tired ALL THE TIME.
“Where’s this judge? Is he in heaven?”
“I don’t know Jake.”
“He looks younger and he told me I have to take care of you, right?”
“Yes, the judge said we have to take care of you when you’re a baby, but you need to take care of us when you’re a grown-up and we get old.”
“Oh. OK”
“What’s in heaven? Wagons? McDonalds? Super big houses? All my friends?”
Sigh, he's not stopping.
“Yes Jake. You won’t want for anything when you’re in heaven.”
Wait for it.
Wait.
For.
It.
Ready?
“When’s mommy going to heaven?”
Gulp. Tap dancing very delicately around this one… the answer could shock, scar, or cause my favorite ‘appendage’ to lose it on the spot.
“I don’t know Jake. God will call me up when he decides I’m done working on earth.”
“Grandpa H didn’t live until 100?”
See where this is going? The anxiety was instantly palpable.
“Nope.”
And the final blow.
“When mommy goes to heaven, I’m going to go too. I need to be with mommy.”
Speechless.
Inhale, barely.
Chest collapse.
Still searching for words.
No answer.
He must have seen me panting.
“Can you breathe in outer space?”
Ummm now I’m cornered.
“In heaven yes you can breathe, but if you are still living on earth and try to go to the moon, you need special equipment to help you breathe.”
“Can I breathe in my nose (huge sniff) like this when I’m in heaven?”
“Yes you can Jake, if you don’t have that nasty head cold.”
Exasperated, I needed to change the subject quick before I burst into tears as my heart split down the middle. I’ve always tried to shield Jake from the notion that he’d ever be alone in this world. But now, clearly, the thought has entered his mind. My greatest fear is now his growing fear. How scary it must be for him to have such self-awareness to know he needs mommy, yet one day may not have me.
I’m sure this isn’t the last of these incredibly deep conversations (for a 9 year old kid with autism) but he’s got to space them out a little more. Between birth-family questions, why he's brown, and going to heaven vs. hell, I can only channel brilliant answers for very short bursts of time.
“C’mon buddy, it’s 7:15, time to get dressed for school.”
Yes, all this happened before the sun even rose completely in the sky.
Super Powers?
No doubt.
--------------------------------------------
When THOSE Wires Connect
January 2, 2012
As a parent of a Super Hero I learned to pray, beg, and bargain with God for Jake’s brain to complete all complicated circuits. I swear I’ll stop swearing if you just allow Jake to understand stranger danger. I’ll give food to ALL the begging guys down the street if You give Jake wisdom to understand respect and treating people nicely. Amen.
Well you’ve heard the saying, be careful what you pray for. Circuits connected alright.
2012 started with a bang when a new corner of Jake’s blessed brain made another connection. OK. Wait. That’s putting it mildly his hot little head started smoking.
“Mommy does everyone grow in a birthmother's tummy?”
Choke, cough, spit out food… “No.”
This is one of the questions that many adoptive parents practice answering and dread when it surfaces, especially if the relationship with the birth family is not ideal. Technically, we have an open adoption, just not THAT open. Letters and pictures annually around his birthday and we get a holiday card with a photo too… that’s usually it, for MANY good reasons.
When we adopted Jake, most of the training taught us that boys usually don’t want go back and find their birthmothers when they’re adults, girls usually want to know. Part of me was really relieved by that little morsel of information, but I didn’t let on. Agencies don’t like adoptive families who are afraid of their birth families. We’ve always been very open and send great annual updates, for the record.
I was so not ready for this conversation. How can I explain such a complicated story to basically a kindergarten cognition? My brain was now smoking, sweat forming on my nose, as we sat across from each other at the breakfast table. Let's open the window it's 34 degrees outside.
….”Jake, a lot of kids grow in their birthmommy’s tummies and then live with them until they’re grown- ups.”
“Why don’t I live with my birth mommy? Did she not want me ‘cuz I’m super strong and unsafe?” kill me now.
Gasp. Gulp. Breathe. Pray. Oh Jesus.
“No, she wanted to keep you very badly and loved you very much, but she was very young. She’s still in school, lived with her parents and couldn’t give you the life you deserve.”
Silence. Snort. He’s thinking. Crap.
“Did she cry?”
Oh boy. Kill me again. Wait. Am I already dead?
“I’m sure she cried honey. She delivered you in the hospital, held and cuddled you, talked with her mommy, prayed and asked God what to do. God told her to find a very strong family to take care of you forever. She picked us.”
“Did the judge pick my name out?”
“No honey. We chose Jacob, and your middle name Edward (after poppy E), but the cool thing is… your birth mother actually picked out the same middle name for you. The judge only made you an official member of our family forever and told you that you need to take care of us when we’re old and wobbly.”
More silence. Gulp of Cheerios. Slam of juice.
“That’s sooooooo cool!!!!!!” he screamed while having one of those awesome full-body shivers. Up from the table and dancing around. Thank God.
“So you have this super cool mommy forever and ever, okay?”
“And super cool daddy too?” Sigh.
“ABSOLUTELY, God put you here for a reason buddy.”
“OK. Can we go look at trains today?”
Sure thing.
Later on, we were chatting about all of our other friends who were also adopted. We know many from church and the neighborhood who have similar stories. I believe, for the first time in his life, Jake felt proud to belong to another very special group of people. His feet were swinging wildly under the table as we talked about these friends and he thinks they’re cool too. (LM, MM, EM, NM that’s especially you)
Chris and I both believe Jake was placed in the perfect family. But we will never stop reminding him about his very special place in our family.
As I tucked him into bed tonight I seized the opportunity of course. “I’m your super cool mommy forever dude!”
“Goodnight cheese hot dog,” he mumbled back from beneath his blankets.
“You are my heart.”
Fall on couch. Pour some wine.
When THOSE Wires Connect
January 2, 2012
As a parent of a Super Hero I learned to pray, beg, and bargain with God for Jake’s brain to complete all complicated circuits. I swear I’ll stop swearing if you just allow Jake to understand stranger danger. I’ll give food to ALL the begging guys down the street if You give Jake wisdom to understand respect and treating people nicely. Amen.
Well you’ve heard the saying, be careful what you pray for. Circuits connected alright.
2012 started with a bang when a new corner of Jake’s blessed brain made another connection. OK. Wait. That’s putting it mildly his hot little head started smoking.
“Mommy does everyone grow in a birthmother's tummy?”
Choke, cough, spit out food… “No.”
This is one of the questions that many adoptive parents practice answering and dread when it surfaces, especially if the relationship with the birth family is not ideal. Technically, we have an open adoption, just not THAT open. Letters and pictures annually around his birthday and we get a holiday card with a photo too… that’s usually it, for MANY good reasons.
When we adopted Jake, most of the training taught us that boys usually don’t want go back and find their birthmothers when they’re adults, girls usually want to know. Part of me was really relieved by that little morsel of information, but I didn’t let on. Agencies don’t like adoptive families who are afraid of their birth families. We’ve always been very open and send great annual updates, for the record.
I was so not ready for this conversation. How can I explain such a complicated story to basically a kindergarten cognition? My brain was now smoking, sweat forming on my nose, as we sat across from each other at the breakfast table. Let's open the window it's 34 degrees outside.
….”Jake, a lot of kids grow in their birthmommy’s tummies and then live with them until they’re grown- ups.”
“Why don’t I live with my birth mommy? Did she not want me ‘cuz I’m super strong and unsafe?” kill me now.
Gasp. Gulp. Breathe. Pray. Oh Jesus.
“No, she wanted to keep you very badly and loved you very much, but she was very young. She’s still in school, lived with her parents and couldn’t give you the life you deserve.”
Silence. Snort. He’s thinking. Crap.
“Did she cry?”
Oh boy. Kill me again. Wait. Am I already dead?
“I’m sure she cried honey. She delivered you in the hospital, held and cuddled you, talked with her mommy, prayed and asked God what to do. God told her to find a very strong family to take care of you forever. She picked us.”
“Did the judge pick my name out?”
“No honey. We chose Jacob, and your middle name Edward (after poppy E), but the cool thing is… your birth mother actually picked out the same middle name for you. The judge only made you an official member of our family forever and told you that you need to take care of us when we’re old and wobbly.”
More silence. Gulp of Cheerios. Slam of juice.
“That’s sooooooo cool!!!!!!” he screamed while having one of those awesome full-body shivers. Up from the table and dancing around. Thank God.
“So you have this super cool mommy forever and ever, okay?”
“And super cool daddy too?” Sigh.
“ABSOLUTELY, God put you here for a reason buddy.”
“OK. Can we go look at trains today?”
Sure thing.
Later on, we were chatting about all of our other friends who were also adopted. We know many from church and the neighborhood who have similar stories. I believe, for the first time in his life, Jake felt proud to belong to another very special group of people. His feet were swinging wildly under the table as we talked about these friends and he thinks they’re cool too. (LM, MM, EM, NM that’s especially you)
Chris and I both believe Jake was placed in the perfect family. But we will never stop reminding him about his very special place in our family.
As I tucked him into bed tonight I seized the opportunity of course. “I’m your super cool mommy forever dude!”
“Goodnight cheese hot dog,” he mumbled back from beneath his blankets.
“You are my heart.”
Fall on couch. Pour some wine.
---------------------------------------
Where it all Began
Saturday, May 14, 2011
There he is! All our hopes and dreams could be held like a football under a wide receiver’s arm. This bundled baby, a bit larger than a bread box, held our future with each breath he drew. Just not the future we ever imagined, planned for, or expected.
I can watch the videos of our first meeting with Jake over and over and over again. I can feel the delight, excitement and disbelief every time. After so many challenges to start a family, we met baby Jake with hearts full of hope, plans for the future and some apprehension. Could anything happen to take him from us? Can I allow myself to love him at this moment? Where’s the birthmother? Would she change her mind, AGAIN?
We will never forget the days before we brought him home. Word spread quickly through our quiet cul-de-sac after an astute neighbor spotted us painting an upstairs bedroom light blue. We didn’t tell many people of our trials… after several previous pregnancy/adoption losses, you learn to not speak a peep until it’s a sure thing.
When word came, we left our home with the newly-painted nursery still tacky to the touch and headed across the state. We held our breath all the way around the beltway and met the adoption folks at their office. A very emotional transfer from foster family to adoptive family took place before we popped him into the car seat and headed for home. Since we received three days’ notice before we could bring Jake home, collecting day-to-day baby supplies was low on our list of things to do. We sort of needed a crib!
After a run through the trusty Taco Bell, we arrived at a home full of baby stuff. Full diaper bags adorned every door, bassinets were placed on every floor, bouncy seats, tummy toys and clothing overflowed our kitchen table. What a miracle, our neighbors ROCK!
From the very beginning, I had always thought Jake was a hard baby. He spent his first 2.5 weeks of life in an awesome foster home where he was held, cuddled and cared for by the most amazing foster family. That was the up side… the downside was, once we got him, we could never put him down! He was used to being held as he slept and carried and doted on every minute. Hard shoes to fill!
As he grew, he hit developmental milestones in his own way. He never crawled on his hands and knees and started running at 9 months. We never stopped moving, he never pointed and we never gave it another thought. We were just so happy to have him! Nothing could be better, even if he was a little on the wild side.
Jake always craved intense pressure and big motion as an infant, but I didn’t know any different. Verbalizations started on time, but since he had 10 ear infections during his first year of life, his language was muffled and fast. Of course, he constantly had fluid in his ears, therefore he spoke funny. Everything sounded like he was talking underwater. Tubes were put in on Christmas Eve day 2004! “HHHHAAAAAMMMMM” first (clearly understandable) word at 14 months. No red flags here.
Realizing I was feeling a little lost and a lot alone, a friend of mine invited me to a mom’s club where we were quickly scrutinized because of Jake’s large size. He was the biggest baby of the bunch, and you know the competition and comparing starts early. So after I was told that since I wasn’t there at the moment of his birth, how could I be sure he was only 9 months old? There’s no way an under-one year old could be doing the physical stuff he could do… (at this point we ran 2 miles a day pushing a wheeled toy) and he was strangely strong. "Well he is Kenyan right, aren't they all runners?" Needless to say, that was the end of my mom’s club experience.
So there we were trudging through the days of parenthood without a clue. I remember calling friends and family to come help me because Jake just couldn’t be calmed easily and I was falling apart at the seams. Family, friends we had just met and those we had known for years, came to our rescue. No one said a peep about his anxiety filled antics and hyperactivity, “every child is different.”
We started private preschool when Jake was 2… almost 3. The first weeks, he chewed his fingernails down the ‘quick’. He couldn’t engage with the other students because he was so over stimulated and rarely made eye contact. He stood in the corner pounding pegs into pounding board, alone. We entered our first parent-teacher conference curious but with trepidation. The first teacher came in and sat down, then ran out of the room and re-entered with a box of tissues. They were about to tell us what we feared but never spoke of.
They outlined Jake’s inability to engage with peers, his anxiety, rigidity with toys, fear of transitions, need for heavy work and all the sensory challenges. They could never come out and say ‘we think he may have autism’ because they were not medically trained to do so and some parents would probably punch them out. But one of them referred us to have an OT evaluation. That’s where it all began. Bless the teacher who had the guts to make this suggestion as I sat before her blubbering like a baby. I left sobbing, Chris tried to console me but I sunk into the seat of the car unable to compose.
What do we do now?
What will this life be like?
Where do we turn?
In the next weeks, we continued at the preschool, brainstormed with the teachers to make a sensory plan. The staff would let Jake pull them around in a wagon before expecting him to sit in circle, had him tote reams of paper up and down stairs in order for him to do a craft and wear a weighted vest when all else failed. Chris and I were shocked, sad and scared. We didn’t know what to expect but knew we instantly needed to start working. This is when we dedicated our lives to Autism and helping our Jakey, there wasn’t a choice.
The several thousand dollar OT evaluation revealed serious sensory dysfunction but not like the typical “A-Team member” where they seem disengaged or in their own world. Jake’s senses were so keen he could follow a scent like a dog, localize sounds in a room at a wavelength not ordinarily heard by humans, his vestibular and proprioceptive systems craved (I mean craved) heavy work and constant input. Jake was agile, athletic and huge. He never got dizzy and could stare at spinning items for hours upon hours. All these attributes were off scale to the point of distraction. Let the race for best doctors begin.
We started intense Occupational Therapy while we waited 16 months for an appointment with a nationally renowned neurodevelopmental pediatrician. Diagnosis: ASD with ADHD and Sensory Dysfunction and the doors for all school services flew open. We were fortunate enough to land in an awesome special education system, one of the best in the country in fact.
Teachers coached us through behaviors, helped us set up a home-school in the spare bedroom, and visited us at home every couple weeks. School also provided speech, OT and one-on-one education. Jake would go to school in the am’s then come home to the same thing here. When his schedule switched to pm’s, we set up ‘work’ for him to do in the morning when he woke up.
Jake would awake to puzzle pieces spread on the floor, bins with 2 different colored bears to be matched, flash cards for matching, and alphabet games. He would do all his work then get me to check it for rewards. Heavy reinforcement, picture schedules and warnings/countdowns for everything ruled our world and still do.
There are so many theories about how to work with these kiddos in the early years. Dr. Greenspan had something called Floortime, where you don’t force the kid into your world; you enter theirs and expand on their thoughts. We combined this with varied sensory diets at home and Jake’s language blossomed. He began memorizing everything we said and plugging it in to similar situations. Language = excellent.
We didn’t realize, however, until Jake started PEP (special ed preschool), that we were actually at an advantage for having adopted Jake. (Isn’t it strange how God works?) Once parents get a diagnosis of PDD, ASD or the like, many deflate and/or deny then often divorce. It.Is.Extremely.Difficult! Some friends have shared with me their feelings of guilt or responsibility for having a child with a disability. They question if something they did during pregnancy could have caused this or if vaccinations do play a role. This guilt and denial is what leads to many children not getting help until later in life. In our case, we were not genetically responsible; we didn’t have the guilt, and were determined to help him organize his days. One major hurdle cleared.
I’m not saying everything is rosy, nor that we know everything. This is just what has worked for Jake and we’ve had our moments believe me. We tried time outs, he’s put holes in the walls, thrown objects and has run away from home. He can make himself vomit on command and will do so if he’s really upset. Chris and I have to really think about our actions and his reactions before we make any decisions. He cannot handle raised voices, shuts down if we’re angry/frustrated and fits on the floor if we stop talking to him.
So as we struggle with the next chapter in our lives, puberty and beyond, our Super Hero is improving every day. We juggle medicines with his ever changing chemistry and cherish the daily miracles. While math may forever remain a mystery, reading is rampant and he is constantly engaged in OUR world.
Where it all Began
Saturday, May 14, 2011
There he is! All our hopes and dreams could be held like a football under a wide receiver’s arm. This bundled baby, a bit larger than a bread box, held our future with each breath he drew. Just not the future we ever imagined, planned for, or expected.
I can watch the videos of our first meeting with Jake over and over and over again. I can feel the delight, excitement and disbelief every time. After so many challenges to start a family, we met baby Jake with hearts full of hope, plans for the future and some apprehension. Could anything happen to take him from us? Can I allow myself to love him at this moment? Where’s the birthmother? Would she change her mind, AGAIN?
We will never forget the days before we brought him home. Word spread quickly through our quiet cul-de-sac after an astute neighbor spotted us painting an upstairs bedroom light blue. We didn’t tell many people of our trials… after several previous pregnancy/adoption losses, you learn to not speak a peep until it’s a sure thing.
When word came, we left our home with the newly-painted nursery still tacky to the touch and headed across the state. We held our breath all the way around the beltway and met the adoption folks at their office. A very emotional transfer from foster family to adoptive family took place before we popped him into the car seat and headed for home. Since we received three days’ notice before we could bring Jake home, collecting day-to-day baby supplies was low on our list of things to do. We sort of needed a crib!
After a run through the trusty Taco Bell, we arrived at a home full of baby stuff. Full diaper bags adorned every door, bassinets were placed on every floor, bouncy seats, tummy toys and clothing overflowed our kitchen table. What a miracle, our neighbors ROCK!
From the very beginning, I had always thought Jake was a hard baby. He spent his first 2.5 weeks of life in an awesome foster home where he was held, cuddled and cared for by the most amazing foster family. That was the up side… the downside was, once we got him, we could never put him down! He was used to being held as he slept and carried and doted on every minute. Hard shoes to fill!
As he grew, he hit developmental milestones in his own way. He never crawled on his hands and knees and started running at 9 months. We never stopped moving, he never pointed and we never gave it another thought. We were just so happy to have him! Nothing could be better, even if he was a little on the wild side.
Jake always craved intense pressure and big motion as an infant, but I didn’t know any different. Verbalizations started on time, but since he had 10 ear infections during his first year of life, his language was muffled and fast. Of course, he constantly had fluid in his ears, therefore he spoke funny. Everything sounded like he was talking underwater. Tubes were put in on Christmas Eve day 2004! “HHHHAAAAAMMMMM” first (clearly understandable) word at 14 months. No red flags here.
Realizing I was feeling a little lost and a lot alone, a friend of mine invited me to a mom’s club where we were quickly scrutinized because of Jake’s large size. He was the biggest baby of the bunch, and you know the competition and comparing starts early. So after I was told that since I wasn’t there at the moment of his birth, how could I be sure he was only 9 months old? There’s no way an under-one year old could be doing the physical stuff he could do… (at this point we ran 2 miles a day pushing a wheeled toy) and he was strangely strong. "Well he is Kenyan right, aren't they all runners?" Needless to say, that was the end of my mom’s club experience.
So there we were trudging through the days of parenthood without a clue. I remember calling friends and family to come help me because Jake just couldn’t be calmed easily and I was falling apart at the seams. Family, friends we had just met and those we had known for years, came to our rescue. No one said a peep about his anxiety filled antics and hyperactivity, “every child is different.”
We started private preschool when Jake was 2… almost 3. The first weeks, he chewed his fingernails down the ‘quick’. He couldn’t engage with the other students because he was so over stimulated and rarely made eye contact. He stood in the corner pounding pegs into pounding board, alone. We entered our first parent-teacher conference curious but with trepidation. The first teacher came in and sat down, then ran out of the room and re-entered with a box of tissues. They were about to tell us what we feared but never spoke of.
They outlined Jake’s inability to engage with peers, his anxiety, rigidity with toys, fear of transitions, need for heavy work and all the sensory challenges. They could never come out and say ‘we think he may have autism’ because they were not medically trained to do so and some parents would probably punch them out. But one of them referred us to have an OT evaluation. That’s where it all began. Bless the teacher who had the guts to make this suggestion as I sat before her blubbering like a baby. I left sobbing, Chris tried to console me but I sunk into the seat of the car unable to compose.
What do we do now?
What will this life be like?
Where do we turn?
In the next weeks, we continued at the preschool, brainstormed with the teachers to make a sensory plan. The staff would let Jake pull them around in a wagon before expecting him to sit in circle, had him tote reams of paper up and down stairs in order for him to do a craft and wear a weighted vest when all else failed. Chris and I were shocked, sad and scared. We didn’t know what to expect but knew we instantly needed to start working. This is when we dedicated our lives to Autism and helping our Jakey, there wasn’t a choice.
The several thousand dollar OT evaluation revealed serious sensory dysfunction but not like the typical “A-Team member” where they seem disengaged or in their own world. Jake’s senses were so keen he could follow a scent like a dog, localize sounds in a room at a wavelength not ordinarily heard by humans, his vestibular and proprioceptive systems craved (I mean craved) heavy work and constant input. Jake was agile, athletic and huge. He never got dizzy and could stare at spinning items for hours upon hours. All these attributes were off scale to the point of distraction. Let the race for best doctors begin.
We started intense Occupational Therapy while we waited 16 months for an appointment with a nationally renowned neurodevelopmental pediatrician. Diagnosis: ASD with ADHD and Sensory Dysfunction and the doors for all school services flew open. We were fortunate enough to land in an awesome special education system, one of the best in the country in fact.
Teachers coached us through behaviors, helped us set up a home-school in the spare bedroom, and visited us at home every couple weeks. School also provided speech, OT and one-on-one education. Jake would go to school in the am’s then come home to the same thing here. When his schedule switched to pm’s, we set up ‘work’ for him to do in the morning when he woke up.
Jake would awake to puzzle pieces spread on the floor, bins with 2 different colored bears to be matched, flash cards for matching, and alphabet games. He would do all his work then get me to check it for rewards. Heavy reinforcement, picture schedules and warnings/countdowns for everything ruled our world and still do.
There are so many theories about how to work with these kiddos in the early years. Dr. Greenspan had something called Floortime, where you don’t force the kid into your world; you enter theirs and expand on their thoughts. We combined this with varied sensory diets at home and Jake’s language blossomed. He began memorizing everything we said and plugging it in to similar situations. Language = excellent.
We didn’t realize, however, until Jake started PEP (special ed preschool), that we were actually at an advantage for having adopted Jake. (Isn’t it strange how God works?) Once parents get a diagnosis of PDD, ASD or the like, many deflate and/or deny then often divorce. It.Is.Extremely.Difficult! Some friends have shared with me their feelings of guilt or responsibility for having a child with a disability. They question if something they did during pregnancy could have caused this or if vaccinations do play a role. This guilt and denial is what leads to many children not getting help until later in life. In our case, we were not genetically responsible; we didn’t have the guilt, and were determined to help him organize his days. One major hurdle cleared.
I’m not saying everything is rosy, nor that we know everything. This is just what has worked for Jake and we’ve had our moments believe me. We tried time outs, he’s put holes in the walls, thrown objects and has run away from home. He can make himself vomit on command and will do so if he’s really upset. Chris and I have to really think about our actions and his reactions before we make any decisions. He cannot handle raised voices, shuts down if we’re angry/frustrated and fits on the floor if we stop talking to him.
So as we struggle with the next chapter in our lives, puberty and beyond, our Super Hero is improving every day. We juggle medicines with his ever changing chemistry and cherish the daily miracles. While math may forever remain a mystery, reading is rampant and he is constantly engaged in OUR world.
--------------------------------------
The Other "A" Word
April 19, 2011
So we knew it was coming – but never really knew when. Being adoptive parents, we’ve read the books, been to all the trainings, have tons of friends in blended inter-racial families, but when ‘the question’ actually surfaces, you’re still never quite ready.
Aside from the fact that Jake is only 8, his Super Powers prevent him from understanding anything abstract. We’ve told him repeatedly that he grew in another mommy’s tummy and then God brought him to us, but this time it was different.
The topic of his adoption surfaced when Jake and I were reading a book about different body parts. I was savoring the moments snuggled in his bed, looking at pictures and answering questions as he creeps ever closer to becoming a man. We had already covered the “how do babies get out?” question so I wasn’t worried about what was on the next page of this illustrated kids book. After talking about the differences between boys and girls; hair, breasts, chests and privates, there it was: a drawing of a baby inside a woman’s tummy, head down, ready for launch.
Jake studied the picture and then:
“Is that Jakey and mommy?”
“No Jakey, remember you grew in another mommy’s tummy,” I answered trying to sound as upbeat as I could.
“Why?” We prayed years for him to actually be able to come up with an appropriate WHY question, but not THIS Why question!!!
“My tummy is broken and can’t carry babies.”
The follow up questions hit me like a ton of bricks. “Where is she? Is she brown?”
I turned to him and saw something in his eyes that told me he really needed this answer as much as I dreaded hearing myself say it.
“She lives far away now buddy and she looks like mommy.”
Ready for it???
Are you really ready?????
“Why’d she ‘give me away’?”
Oh God, the words we dreaded to ever hear.
“She didn’t give you AWAY honey, she prayed and picked our family for you. She made the best life plan she could. She was very young and couldn’t take care of you.”
Silence.
More silence.
Agonizing silence.
What felt like 20 years just passed by me in 1 minute. Then I saw a sadness I never want to see again.
“Jakey what’s wrong?”
“I’m just a little sad she didn’t want me.”
I couldn’t breathe. Every inhalation felt like sipping dense air through a twisty straw. Tears came to my eyes and I struggled not to let my Super Hero detect my raw emotions. We want nothing but happiness surrounding the topic of his adoption. A child challenged in so many areas launched right to the most typical and common response we had been "prepped" for. I was still speechless.
I reminded him that God doesn’t make mistakes and He chose our family for him. Interestingly enough, that sailed through his brain quickly, not satisfying his curious mind, then I reminded him that his birth mother chose our family too.
“She wanted me with you?”
“Yes.”
“OK. Good.”
The floodgates are open and the fear is percolating within me and Chris. Will Jake perseverate on the fact that we’re not his biological parents? How many times will we have to struggle through this conversation? Will his brain, that keeps every tidbit of information, please store these factoids way in the back for another day?
This morning there are more “I Love You’s”, more snuggling, more thanking God for our Super Hero. We’re cherishing more of the silliness and holding on to every time our eyes lock. There are also lots more questions in store we're sure.
How does one explain to a concrete thinking 8 year old (developmentally -6 yo) the role of a birth father? How did he end up brown if his birth mommy looks like me (Vanilla with blue eyes)? Where is birth father? While we know all these answers, putting these very complex and grown up ideas into his head is daunting. How much does he need to know? Will he ever really understand this and does it matter?
He is our son. Always was our son. Will always be our son.
As I wrapped him into his cocoon for nighttime, he smiled and did his ‘full body giggle shiver' in my arms.
“You are my heart, Jakey.”
“Thank you God for mommy, daddy, Jake, Sam and super duper hot dogs! I’m so happy.”
The Other "A" Word
April 19, 2011
So we knew it was coming – but never really knew when. Being adoptive parents, we’ve read the books, been to all the trainings, have tons of friends in blended inter-racial families, but when ‘the question’ actually surfaces, you’re still never quite ready.
Aside from the fact that Jake is only 8, his Super Powers prevent him from understanding anything abstract. We’ve told him repeatedly that he grew in another mommy’s tummy and then God brought him to us, but this time it was different.
The topic of his adoption surfaced when Jake and I were reading a book about different body parts. I was savoring the moments snuggled in his bed, looking at pictures and answering questions as he creeps ever closer to becoming a man. We had already covered the “how do babies get out?” question so I wasn’t worried about what was on the next page of this illustrated kids book. After talking about the differences between boys and girls; hair, breasts, chests and privates, there it was: a drawing of a baby inside a woman’s tummy, head down, ready for launch.
Jake studied the picture and then:
“Is that Jakey and mommy?”
“No Jakey, remember you grew in another mommy’s tummy,” I answered trying to sound as upbeat as I could.
“Why?” We prayed years for him to actually be able to come up with an appropriate WHY question, but not THIS Why question!!!
“My tummy is broken and can’t carry babies.”
The follow up questions hit me like a ton of bricks. “Where is she? Is she brown?”
I turned to him and saw something in his eyes that told me he really needed this answer as much as I dreaded hearing myself say it.
“She lives far away now buddy and she looks like mommy.”
Ready for it???
Are you really ready?????
“Why’d she ‘give me away’?”
Oh God, the words we dreaded to ever hear.
“She didn’t give you AWAY honey, she prayed and picked our family for you. She made the best life plan she could. She was very young and couldn’t take care of you.”
Silence.
More silence.
Agonizing silence.
What felt like 20 years just passed by me in 1 minute. Then I saw a sadness I never want to see again.
“Jakey what’s wrong?”
“I’m just a little sad she didn’t want me.”
I couldn’t breathe. Every inhalation felt like sipping dense air through a twisty straw. Tears came to my eyes and I struggled not to let my Super Hero detect my raw emotions. We want nothing but happiness surrounding the topic of his adoption. A child challenged in so many areas launched right to the most typical and common response we had been "prepped" for. I was still speechless.
I reminded him that God doesn’t make mistakes and He chose our family for him. Interestingly enough, that sailed through his brain quickly, not satisfying his curious mind, then I reminded him that his birth mother chose our family too.
“She wanted me with you?”
“Yes.”
“OK. Good.”
The floodgates are open and the fear is percolating within me and Chris. Will Jake perseverate on the fact that we’re not his biological parents? How many times will we have to struggle through this conversation? Will his brain, that keeps every tidbit of information, please store these factoids way in the back for another day?
This morning there are more “I Love You’s”, more snuggling, more thanking God for our Super Hero. We’re cherishing more of the silliness and holding on to every time our eyes lock. There are also lots more questions in store we're sure.
How does one explain to a concrete thinking 8 year old (developmentally -6 yo) the role of a birth father? How did he end up brown if his birth mommy looks like me (Vanilla with blue eyes)? Where is birth father? While we know all these answers, putting these very complex and grown up ideas into his head is daunting. How much does he need to know? Will he ever really understand this and does it matter?
He is our son. Always was our son. Will always be our son.
As I wrapped him into his cocoon for nighttime, he smiled and did his ‘full body giggle shiver' in my arms.
“You are my heart, Jakey.”
“Thank you God for mommy, daddy, Jake, Sam and super duper hot dogs! I’m so happy.”
------------------------------------------------
"I want new parents, instead of these grouchy ones!"
Saturday, February 26, 2011
Yes, one day the reality will settle in child that we (as parents) are not ALL fun and games. But it’s a hard line to walk when you have a kiddo with Super powers. You see… these powers take a while to develop and along the way Jake became used to getting what he wanted, as long as he used his words to ask for it.
“Can I have more time on the ipod because I can’t finish my game in 10 minutes?”
“Wow, heck yea buddy, that was great talking,” we say while amazed at how he formed that complex thought into words and didn’t fall to the floor in frustration.
“I think I want a birthday cake ice cream cone, because I don’t like my ice cream in a bowl it’s too hard to eat with the big spoon and slides all over,” Jake says.
“Of course, just because you asked so nicely, with great words, here’s your massive, bigger-than-your-head waffle cone full of ice cream!”
It’s tough not to fall into the trap of spoiling these special kids. (Guilty as charged? Not sure)
Now that Jake has developed this wonderful language, believe me there are days when I wonder why we EVER taught him to talk to begin with. He’s able to tell us exactly what he thinks. How beautifully typical. Not all the time!
Saturday morning started like any other day. Jake was up and running hallway laps in full gear at 6am while Chris and I were still comatose. He’s allowed to play with his ipod, then wake mommy up at 7am. Good gig, ehy? Jake was having a great morning, even showered by himself, dried off by rolling his wet body all over our bed, then got himself dressed in 2 pairs of pants and 3 shirts. All Good!
His request this morning was for scrambled eggs, “because I need good protein energy before karate class with Mr. J.” Righto bud, coming right up! Eggs done, apples cut, juice poured, now time to peel the ipod from his grimy kid-grasp. I start to get frustrated that he’s not giving up the toy as easily as he used to and is totally consumed by his game INSTEAD of the wonderful breakfast prepared and waiting for him at the table. Mommy gggrrrrrr.
Superman Jake finally blesses me with his presence at the table and declares he doesn’t want eggs. MOMMY ggggggrrrrrrr. The only saving grace was that I hid a string cheese inside the eggs. He still ate only about half the eggs and the entire Honey crisp apple. He’s lucky, those babies are about a buck a piece right now.
Following breakfast, it was time to get ready for karate, no time for ipod in between, although he’s already grabbed it and started crafting a new Jelly car game, without permission. “Give it up buddy, time to get ready for class.” Jake darts for the garage (to hide), once he’s back inside he hits my arm, falls to the floor and tries to throw a small surround-sound speaker on a stand. MOMMY GGGGGGRRRRR. (I yelled, shoot, he got me!)
The more frustrated I get, the madder he gets. I just needed to walk away. Chris was thankfully able to come in and diffuse the situation and get Jake motivated for class. Whew… lucky for Jake and mom.
I am still angry throughout all Jake’s attempts to make friends again and bait me into conversation on the way to class. “Mommy will you do exercises with me at the karate class?”, “Mommy can I get a brother? I'll be nice to him but, I’m not going to talk to him because he won’t talk, just a baby.” “Mommy, remember I took a shower by myself this morning?”, “Mommy, are you still mad?”
“Yup!”
Daddy matter-of-factly informs Jake that he too is also sad about Jake’s behavior this morning.
Silence, silence, silence. We can hear the wheels in Jake’s head turning. Wait for it. Wait for it.
“You know what, I think I want a different parents. Different mom and dad that aren’t so grouchy.”
Struggle to ignore, struggle to ignore, struggle to ignore.
HA! Just another day!
"I want new parents, instead of these grouchy ones!"
Saturday, February 26, 2011
Yes, one day the reality will settle in child that we (as parents) are not ALL fun and games. But it’s a hard line to walk when you have a kiddo with Super powers. You see… these powers take a while to develop and along the way Jake became used to getting what he wanted, as long as he used his words to ask for it.
“Can I have more time on the ipod because I can’t finish my game in 10 minutes?”
“Wow, heck yea buddy, that was great talking,” we say while amazed at how he formed that complex thought into words and didn’t fall to the floor in frustration.
“I think I want a birthday cake ice cream cone, because I don’t like my ice cream in a bowl it’s too hard to eat with the big spoon and slides all over,” Jake says.
“Of course, just because you asked so nicely, with great words, here’s your massive, bigger-than-your-head waffle cone full of ice cream!”
It’s tough not to fall into the trap of spoiling these special kids. (Guilty as charged? Not sure)
Now that Jake has developed this wonderful language, believe me there are days when I wonder why we EVER taught him to talk to begin with. He’s able to tell us exactly what he thinks. How beautifully typical. Not all the time!
Saturday morning started like any other day. Jake was up and running hallway laps in full gear at 6am while Chris and I were still comatose. He’s allowed to play with his ipod, then wake mommy up at 7am. Good gig, ehy? Jake was having a great morning, even showered by himself, dried off by rolling his wet body all over our bed, then got himself dressed in 2 pairs of pants and 3 shirts. All Good!
His request this morning was for scrambled eggs, “because I need good protein energy before karate class with Mr. J.” Righto bud, coming right up! Eggs done, apples cut, juice poured, now time to peel the ipod from his grimy kid-grasp. I start to get frustrated that he’s not giving up the toy as easily as he used to and is totally consumed by his game INSTEAD of the wonderful breakfast prepared and waiting for him at the table. Mommy gggrrrrrr.
Superman Jake finally blesses me with his presence at the table and declares he doesn’t want eggs. MOMMY ggggggrrrrrrr. The only saving grace was that I hid a string cheese inside the eggs. He still ate only about half the eggs and the entire Honey crisp apple. He’s lucky, those babies are about a buck a piece right now.
Following breakfast, it was time to get ready for karate, no time for ipod in between, although he’s already grabbed it and started crafting a new Jelly car game, without permission. “Give it up buddy, time to get ready for class.” Jake darts for the garage (to hide), once he’s back inside he hits my arm, falls to the floor and tries to throw a small surround-sound speaker on a stand. MOMMY GGGGGGRRRRR. (I yelled, shoot, he got me!)
The more frustrated I get, the madder he gets. I just needed to walk away. Chris was thankfully able to come in and diffuse the situation and get Jake motivated for class. Whew… lucky for Jake and mom.
I am still angry throughout all Jake’s attempts to make friends again and bait me into conversation on the way to class. “Mommy will you do exercises with me at the karate class?”, “Mommy can I get a brother? I'll be nice to him but, I’m not going to talk to him because he won’t talk, just a baby.” “Mommy, remember I took a shower by myself this morning?”, “Mommy, are you still mad?”
“Yup!”
Daddy matter-of-factly informs Jake that he too is also sad about Jake’s behavior this morning.
Silence, silence, silence. We can hear the wheels in Jake’s head turning. Wait for it. Wait for it.
“You know what, I think I want a different parents. Different mom and dad that aren’t so grouchy.”
Struggle to ignore, struggle to ignore, struggle to ignore.
HA! Just another day!
