Just writing this really quick before I forget this conversation with Jake. The other day, while Jake was typing up what we call, "a brain dump" we started chatting. He very pointedly asked me to change some language I use.
Since I am constantly watching every word I use already, I admittedly was surprised and slightly exasperated.
He started, "When I'm upset and having a meltdown where I may be physically dangerous, throwing my body, jumping and running around, don't tell me to stop because that will make me worse."
"What do you want me to say when I see you so upset and maybe dangerous?"
"I want you to tell me to go take a break, in a nice voice."
"What's the difference between saying 'stop' and 'let's go take a break'?"
"When you say stop it makes me think I did something wrong."
There is so much fear during the teenage years that every word, even the tone of every word matters. The look on your face matters. How you hold your head matters. Where your arms are, matters. Protecting your teenager's self esteem is critical, every teen, every minute, especially those with multiple disabling challenges like Jakey.
First and foremost, this trip on the water was by no means about a "sail" boat. I'm referring to the amazing staff onboard the Spirit of Washington Brunch Cruise that led and followed us around the ship to make sure Jake had fun and I was relaxing.
This decision to take the cruise started with regret. Jake has been having a particularly hard time lately and he totally didn't deserve such a treat, but I did! When he's on restriction, I'm on restriction and suffering just as much. So his poor behavior choices really have a way of controlling everyone ... I think it's this way for many Autism families who have kids/teens/adults who cannot be left alone. Regardless, I booked it, I wanted to go, so we did.
As we approached the dock, I saw the Odyssey Cruise (a low flat floating dining room) and a giant Yacht parked just behind it. I showed Jake lower boat and said that's where we were having lunch. He was excited but just couldn't peel his eyes away from the spectacular Yacht lurking around the corner of the dock.
The time came to board and I approached the Odyssey and showed our tickets. The man said, "This is not your ride, THAT is! You are on the SPIRIT." I think Jake nearly jumped out of his shorts! I made the man double check. Whoops I messed up my reservation.
So there we went onboard the SPIRIT and were led to our small table-for-two by the window... as well as just feet from the dance floor and DJ stand. Jake started dancing in his seat and getting very silly. He then told me, "I'm afraid I'm going to get out of control here," and with that he was gone. He bounded across the room and approached a group of staff and I could hear him say, "Um I am about to lose control and my table is too close to the dance floor and I have autism. I need a quiet table, please." Now I nearly jumped out of my pants with pride. I couldn't believe, given his mood swings lately, that he just independently advocated for himself.
Moments later a woman met us and told us we will be much happier downstairs. It was very quiet there. We descended to the lower floor and were met by three gorgeous men. One manager and two waiters, I believe. All very concerned about Jake's happiness and safety. Half the room was filled and the other half, not even set.
We were instructed to choose the most comfortable seat. So we placed Jake with his back towards the rest of the room and I sat across from him. About 40 other people were seated on the other side by the buffet and Jake was so quiet and calm. The manager told us not to hesitate to ask for anything,... enter Charles.
This young man was so much more than a waiter. He approached with the biggest smile and best attitude. He shook Jake's hand upon introduction, "You, my friend, can call me Charlie." We placed an order for water and lots of Diet Coke, my addiction, for me! Mr. Charlie even brought me my own pitcher in case he got tied up on the other side of the room. He didn't want us to 'want' for anything.
Jake was fine with water, but Charlie wasn't. He peppered me with questions about carbonation, sugar and fruit juice. I answered and could see the wheels turning. "Jake, come with me, we'll find you a drink." They emerged from the bar with a spectacular fruity delight. "This is the Jake Splash," Charlie announced, "it has passion fruit juice, pineapple, oj, cranberry juice and topped with strawberry and a slice of pineapple."
We next chatted about the level of music, the booming fabulous voice of the DJ, and general order of events for the lunch. Charlie listened and gathered every bit of information he could. He didn't "half-listen" while jotting things on a pad. He listened and then acted.
Moments later, the buffet was opened and there was Charlie, again. "You just hang out a bit, I'll come back and take Jake up when the line dies down." Uh..... ok. Jake was beaming in the light of constant attention from Charlie.
Ten minutes later, there he was, "Jake let's go get some food." He held his salad plate, pointed out and named every fancy shredded, cubed and split veggie. Named the dressings. Jake filled his plate and handed it to Charlie. This fabulous waiter continued to name all the fancy meats, casseroles, and ask Jake about his likes and dislikes all while toting Jake's overflowing salad plate. They were back at the table and I was still in line. Charlie arranged the silver, unfolded the napkin, poured more water and offered more help. I'm stunned.
Then I see Charlie talking with the manager Michael and then back to the DJ. Minutes later he is at our table. He reported that he asked the DJ to give him a warning before he cranked up the music because it could upset Jake. As soon as Charlie got the "signal", he came to escort us upstairs to the top level of the sailing paradise. It was quiet, sunny, and 85 degrees. He had me so relaxed I actually requested a glass of wine and another Jake Splash for the beast.
Charlie was running up and down 3 flights to get our drinks and check on us 3 times during our time up top.
We stayed up top for a spell then headed back to our dining room. No one was dancing so I hung out near the bar, chatting with Charlie as Jake was near the DJ. I turn to look and the chef Don was dancing with Jake on the dance floor. They started with the Chicken Dance, bc Jake was screaming some chicken song, and then a slower piece came on. Don insisted on trying to show Jake how to dance slower to the beat and I was cracking up. Charlie instructed me to stay put and he's "got Jake". He moved closer to watch and supervise Jake's mood and safety.
Near the end of the trip, I thanked Charlie for taking such care with Jake and learned he has a decade of experience caring for people and children with intensive needs. He is such a gift. We discussed the importance of Jake having role models that "look like him" and needs a "big brother". He then offered to help us. Gasp!
We were getting ready to leave and up comes the manager, Michael. He handed me his card and said Jake is always welcome on their ship, with this crew. He told me to let him know when were coming back and when Jake is old enough to have a job! "This group of strong African American men will take care of him."
..... and now I'm almost crying.....
Enter Charlie, again. He hands me a bag with the Jake's splash glass and a tiny bill for $7.00. Yes $7, only 7 dollars. I was sure this was a mistake so I "mistakenly" added a bunch of money to that little tip line. He also included contact info.
This was not just a lunch cruise. This was a brunch that empowered Jake and he felt so accepted by the folks he so seeks validation from. I actually got a chance to relax and just let Jake be loved.
I swear I do not work for the SPIRIT of Washington. I have not been paid to write this. But when I'm moved, I must write. Thank you Don, Michael and Charles. You will be seeing us again.
Following a pretty intense week, and raw blog post, I'm happy to say I have some good news to report. (Read about last week here)
Again, more proof that if we just listen and watch, our kids/young adults, tell us what their bodies need. Much like when our bodies need protein and we crave meat, Jake's body is telling him what his body NEEDS.
In the wake of a couple months of growing, very long naps and increased aggression, we increased one of his medications. I know, many people are afraid to try meds for fear that they will "change" their child. It WILL change your child. Carefully prescribed and planned out medication will give your kiddo a chance at learning and clarity.
I realize this is a hot button issue, but I stand by medication. I've learned not to judge others' parenting choices, as I believe we all do what we think is best and what we can handle at the time. However, if your child was suffering from the flu or migraines, you wouldn't think twice about meds to help. Why not try anything that might help balance their chemicals to increase chances at learning and success.
I'm not a doctor, I'm speaking from experience. As Jake was spiraling into this latest trip to the "dark side", his anxiety increased too. I thought it was because his body was changing, getting bigger and he's afraid of change and growing into an adult. Some of that is true, however, he would get very upset telling us his "memories are gone, just black."
Sit with that a minute.
His brain was so clouded with unbalanced chemicals, it was impeding his ability to control himself, focus in class and remember basically anything for 5 seconds. I regret not figuring this out sooner, (I know, stop being hard on myself) but it took a med increase to solidify this for me.
We increased one med, after just 3 days, Jake confirmed we made the right decision through amazing conversation.
"I can see the ice rink again. I can see my old school, the hallway, the lockers and the old music room! I see my old bus drivers and route numbers. My memories are coming back," he reported excitedly!
Jake's insight has always been incredible, we've discussed everything, EVERYTHING, since he was born. I used to walk around the house narrating my actions, the reasons, as well as emotions to match my facial expression, and he's learned over the years.
So when he talks, we listen, very closely and look for root causes. This time, because it was medicine related, we did take a little longer to take action.
If you are hesitating about medicating your child, please read this and re-read it again. The right medicine can free your angel's brain and open up dark doors that have been closed until now. He is so excited for his memories to return and have good days at school!
I'm open to conversation about this, feel free to email any time.
We headed out to find a new suit for Jake. He has a couple of appearances in the spring so he needs a lighter suit and we had a lovely gift card burning a hole in our wallets.
The weather is dreary and damp so Jake put on this huge wool sweater plus a fleece lined jacket and headed out the door.
I always laugh when we enter the dress-clothes stores because salespeople don't really know what to do with us. My hair was piled on top of my head, I had not makeup on so the purple bags under my eyes enter the room first, and I'm in yoga pants!
The salesman approached us and then with a slick deke of a pro hockey player, walked past us, after getting a good look. Then, I guess guilt got the best of him and he turned around and came back. "Can I help you?" I only answered that I needed Jake sized so we could look around at suits. (Little known fact, I used to work in a fine men's clothing store back in the day.) Perplexed, he pulled out a tape, sighed and took a measurement over Jake's sweater then directed us to the appropriate rack.
We quickly spotted and chose a great light grey suit, ON SALE! Jake was doing his little happy wiggle as he eyed the suit... the ties... the shoes... the suits... the ties... the shoes... the pocket squares! The salesman disappeared and came back with a dress shirt for Jake. He handed it to Jake with directions to put it on, in order to try on the suit coat.
Off Jake goes to the changing room with ONE direction.
As I waited and glazed over while watching the awful news blaring from the TV, Jake emerged from the dressing room wearing the dress shirt. The salesman promptly tried slipping the coat onto Jake's arm. It went up a little bit and then seemed like it was tight.
Jake said, "Whoa, it's tight with my sweater on."
The salesman was very surprised and confused.
I guess we didn't tell him to take off his wool winter sweater first, then put on the dress shirt. He did do exactly what he was instructed.
Next it was time to try the pants... "ok, let's try the pants now." Jake promptly started to drop his drawers in the middle of the store! <Gasp>! "Right here?" he asked with his jeans unbuttoned and his underwear cresting the waistband... "NO NO NO!"
To me this was CLASSIC Autism at its finest. I love when these lessons are taught naturally and spontaneously. Poor salesman had to learn this the hard way... now on to the shoes... what could go wrong?!?!
This kid... my heart....
He's determined to meet former President Barack Obama and Michelle Obama. Well he's convinced they will hire him for a job one day too. Here's his latest effort to snag the attention of the Obamas.
Hi and thank you Mr. president for helping us with pride in our nation. i think it's awesome to see a man who looks like me, that is successful in our population. So how can we work together to give other young African Americans hope like you have given me? Every young person needs to feel important and "heard". Your Champions of Change program did that for me. I'm a young man. I do motivational speeches and educational speeches. I was a Champion of Change in September 2015 because I overcome my challenges everyday to teach police about Autism. I think it is important to teach police about Autism because they need to know how to act with people who are different from them. I also think it's important to understand that people with autism are gifted on this earth. Everyone has a special purpose. I want to help you spread a message to everyone. So let's work together. When is a time to meet in person to see how I can help you. Even People with disabilities are able to change lives. Can I talk to you privately with mom in your fancy building like your office. Thank you for giving me hope and by the way I liked your African American dance that I saw online. Thank you have a good night.Sincerely Jake Edwards PS I am Kenyan and German just like you, your mom looks like my mom we have things in common.
We like to believe most people are kind-hearted and want to help. Admittedly, I'm not one to ask for help often, but I do sparingly and reserve it for big jobs.
Our "Team Jake" is the family we've made out here on the East Coast. It's made up of doctors, coaches, former teachers, police officers, our training team and friends. We text and visit occasionally, and I try not to ask for much.
I called in the troops to reinforce Jake for some mature and controlled behavior. Jake had a rough night and was very upset at bed time because he left his iPhone in our car which was overnight at the repair shop. He didn't get physically threatening, didn't break anything, or aggress towards me at all. This is a new change and a very welcomed one as stress and puberty change his personality every minute.
So this morning, I sent out an email to "Team Jake" and asked if they had time to send Jake a text of reinforcement for controlling himself in a very upsetting situation. I was thinking maybe one or two folks would actually have time to complete the request, so I'd be thrilled with that.
TWELVE of our Team Jake members sent him a text. So when he looked at his phone after school, it was filled with encouragement and congratulatory texts. This is how to guarantee repeating a desired behavior. Don't ever be afraid to ask!
So thank you to all of team Jake: Julie, Annette, Laura, Laurie, Betsy, Andrea, Janelle, Shelly, Mike, Matt, Peter and Tara, for being our East Coast Family! We could never raise a Super Hero on our own.
Stay Miracle Minded friends. Always acknowledge the blessings.
Tums for breakfast.
Ten Hail Mary's.
Tears mixing with lotion on my face are making a slimy mess while I sit.
Crying, as Jake takes flight.
Checking Life 360 GPS every 15 minutes, well 10 minutes, well....ok 5.
Let's be real... my phone battery may die because I keep refreshing the app to check Jake's location as he embarks on his first "pack ride" on his bike.
He's strong, he's fast, but also sensitive. He doesn't like too many people in a room near him let alone a bunch of strangers, inches away, moving at 15mph.
As the sun came up, Jake joined 15 men at All American Bicycle Center, established and experienced riders, for a group jaunt through the back streets of our county. He's admittedly nervous. This is a kid who has done speeches in front of hundreds (thousands) of people with no fear, is nervous?!
His bike coach Matt is the ride leader. He appears calm but always does. Introduces Jake to the group as his friend and good rider. Never mentions Autism. I'm thinking how amazing is that? (Then I was glad I briefed the group while Jake was out of ear shot. He's impulsive.) Thinking, what if I hadn't mentioned anything? Would he be accepted as just another rider? But then if he swerves and nails someone? They need to know to keep a little more space. I think I'm ok.
The tums I had for breakfast, is not mixing well with the Diet Coke I'm mainlining at McDonalds. I wait.
GPS: "Moving near H.C. Road. You are 19 minutes drive from Jake."
Ok. He's still moving. Looks like he's at an intersection. I hope he can get his foot off the pedal. It's his first ride with clip pedals. He's agile, but if he's distracted it could get stuck. He could fall into traffic. Is there a shoulder on that road? How close do the cars come? What if he hits another rider? They're still stopped. Maybe it's a water break.
I was anxious this morning, but think I did a pretty good job of hiding my jitters. I offered little input, short instructions, no real emotion.
I was mostly calm, mostly, and gave him room. At home he was asking lots of questions, in the car he reviewed his "post-bike BBRT" (Brain Battery Recharge Time), I think for my benefit. This way he won't have to tell me to stop talking.
Once at the meeting place, he wanted distance. He's the only one there with "mom" so I gave him space.
"Moving near J.C. Road. 18 minutes drive to Jake."
I wonder if he feels better now that the endorphins have kicked in. This group rides slightly faster average pace than Jake is used to. He'll push himself to keep up. Prepare for anything this afternoon.
Stopped again. It's not an intersection. Oh no. I hope he's ok. Please don't be a flat... or worse.
My tears have dried as my mind races. Go Jake. I'm staring at the green dot on my phone, willing it to move so I know everything is ok.
"Moving again near J.C. Road. 15 minutes drive to Jake."
I texted Chris that I was surprised by my tears. He replied, "and the sun came up again."
He knows me. He knows watching this boy fly brings tears of pride, fear, excitement and did I mention fear.
I should be working. Need something to distract my brain. Is it this hard for all parents? When the kids stretch their wings? Will this get easier? I guess it has to. Trying to find a deep breath... fly baby, fly.
This is how acceptance and understanding happens. One ride at a time.
When I say our kids see and hear everything, I literally mean they see and hear everything. I chalk it up to part of his Autism Super Powers, but today he struggled to use them for good!
We were riding in the car and I was chewing gum. I could feel this man-sized-observer in the seat next to me staring a hole through my head. I figured it was leading nowhere good, so I ignored. At the next light, I turned to look at him and he whipped his head in the opposite direction while snorting to hold back a laugh. Happened a block later and the light after that.
I asked what he was doing and he could barely talk.
"BWAHAHAHAHA" (I hear). Leg slaps included, just for added impact.
"What?" I asked.
"Your mustache has wrinkles, now! BWAHAHAHAHA!"
"I asked what on earth?" He answered that I have wrinkles from my lips now like an "old lady grandma." I tried to save myself and told him the wrinkles were from 40 years of playing flute and piccolo and don't have a mustache. I really tried to stay calm and not crack up.
"BWAHAHAHAHAHA! Does your mustache get in the way of playing flute?"
This isn't exactly a One Minute Miracle, but many connections were made during this conversation, admittedly at my expense.
I'll let you all know where to get the cheapest botox and a close shave.
I never knew lunch at Taco store would provide life lessons and a near panic attack at the same time. Let me set the scene for you!
We enter the slowest Taco shop on the planet and stand in a line of about 15 people . . . all ahead of us. I can see Jake taking in the crowd, eyes darting faster and faster, as they are all teenage boys his age, his size and his appetite. They were joking around while waiting for the their food and were speaking loudly.
We waited and waited and I could see Jake growing more nervous as the noise level climbed and the rowdy teens started sneaking each others' phones and laughing!
I didn't say anything to Jake, at risk of him forming judgement based on my face or tone. I just watched and chuckled a few times. He watched them; eyes darting from one to the other, studying long hair, cool hats, and pants belted below the butt. He looked confused at times, but afraid to ask me anything at the moment.
Once we were sitting down and eating, he was focused on his plate, that is until two teens exited. They had run outside and were 'play boxing' each other just outside the glass doors. You know, the soft, fake punching and sound effects you do with your siblings to piss off mom!
Jake spotted them fighting, but couldn't tell they were playing. Faster than he inhaled his taco, Jake was up, phone in hand and running for the door. He was about to go outside to stop the fight, then call police!
I turned around and screamed, "Jake". At the same time, another kid (not part of the crowd) was up right behind Jake. He was going to grab him!
Now Jake was really scared!
He came back to the table, shaking, 9 & 1 dialed on his phone. "They're fighting, they're fighting! It's not safe, I'm calling the police!"
I tried to explain, as calmly as I could, that he had to look at the faces. The kids were smiling and joking while punching. A social cue completely missed in the emotion of the moment.
Two tacos and a nachos down, the guy seated by the window came over the introduce himself as Kenyon. The twenty-something explained to me that he has a little brother who "his mom can't leave alone for one minute, not even to go to the bathroom. He can't even sit in a chair, ma'am! I can't remember what he has though, what's that word?" I asked if he's trying to explain Autism? He answered yes, then continued, as soon as he saw Jake run towards those guys he felt he needed to protect him. He explained he knew because, "he (Jake) didn't act like the other boys, he seemed like a good kid and he was about to get really hurt!"
I was pretty amazed by this kid. I wanted to give him a hug for even caring to begin with, but at the risk of embarrassing him in front of the others I just shook his hand with my cheesy, greasy fingers.
Jake refilled his drink while I watched two other group members make fun of his uneven socks, too tightly tied shoes and felt a pit form in my stomach. He was bigger than most of them, but "younger" than all.
I didn't say anything, I was waiting to see if Jake even noticed the comments.
Nope. (I call that "beautifully oblivious".)
While I answered the barrage of questions from Jake on the way home, we talked about the police man rule "protect the officer first". He understood that and was excited to be compared to being a police man.
There were many quiet moments though too . . . he was thinking . . . shaking . . . confused.
I was emotionally exhausted from the lunch. My stomach was sick from the experience as I forced myself to think of what we learned. I thought back to Kenyon. He was our miracle of the moment and put there for a reason.
This boy. This boy is my heart.
There are times, as with every parent, that you want to pop their heads off, but then there are the moments of tenderness that seem to erase your last fit of frustration. These moments usually happen with older kids who are realizing all the work their parents invest in them, but when it happens with a young spectrum kid, it's a miracle.
I'm struggling right now with allergy-yuck-bronchitis. So there's a lot, A LOT of coughing, well barking, going on. I can't breathe without hacking. This morning, Jake came to breakfast and saw my lineup of 4 medications and promptly said, "Good morning, are you going to die?"
That's not the tender part...
This must have been with him all day. When I picked him up, I was still coughing. Following his exercise class, still coughing... take inhaler while driving... breathe!
Jake again asked me in a very concerned and scared voice, "Mom what exactly is wrong with you?"
So I explained that I was very glad he asked so we could alleviate some of his worry. I told him that sometimes I get allergies and get all gunky. Sometimes my air pipes swell up from coughing and all that gunk gets stuck, tickling me inside and making it hard to breathe. He understood that, thank goodness, there's not an easier-to-understand word than "gunk"!
"If we are at home and you stop breathing, will you go in an ambulance?"
"I hope so, but someone would have to call them."
"Would Dad ride with you in the ambulance? Would I ride with you in the ambulance?"
I said, "well, maybe daddy, but we'd find a friend to stay with you so you weren't scared."
"No. I want to go with you. I want to be with you always. You are my partner, my other part, like."
I nearly needed to pull over the car. Crying was not conducive to the current snot situation so I was just sat quietly soaking in the moment.
"You know that when I get mad and yell that I love you so much. I could never be without you mommy. I just lose control sometimes then I feel really bad."
My heart was swelling again. I could feel beating in my temples.
I could feel his deep need to know I will always be here, almost desperation.
That's a lot to carry. It can be heavy. It can be hard.
But I'll carry this miracle with me every day.
One Minute Miracle Archives