I am mad!
While I try to always write uplifting and encouraging posts, (there's enough negativity surrounding autism) some days I have to get this out of my brain. So your choice, read my purge or not.
I'm pissed at ASD. This disorder that grips our son's growing body angers me to no end. To see your child wanting desperately to make good choices, make you happy and earn the "attaboys" but is unable to stay focused or seated long enough to actually follow through, is so frustrating and heartbreaking.
The exact affliction that makes Jake our Super Hero amazing also can be a villain with a mask and no flashy cape. He hides in the dark spots of Jake's brain and loves when his meds wear off.
To realize his total dependence on "big pills" is saddening. His current attention span is about 3 seconds, I swear.
Last night and this morning Jake was begging me for medicine. He's outgrown his dose and there's no messing with anti-psychotic meds.
"My body feels weird!"
We've again had the "ambulance talk", the "police car talk" and the "time out" talk for when his levels of stability and safety fluctuate.
So now he's terrified.
I don't like to use the word hate, but when I see my kiddo struggling so much, I can easily say some days I HATE THIS!
Thanks for listening and for your continued support.
Back to prayer time: strength, patience and healing needed.
We've grown and grown and outgrown our dose. I knew the day would come and dreaded it. We've been in such a good place for a long, long time.
Now. OCD and hyperactivity rears its painful head.
Doors are slammed not once, but 4 times.
The iPad charger is checked not once, but 3 times.
The bedsheets are straightened not once, but 2 times. The weighted blanket provides full weights once again.
Reminders are 3 and 4 times. Prompts are many.
The trampoline no longer sits idle.
He cannot sit at the table for a full meal. Constant motion.
He comes down the stairs like a herd of elephants.
We get comfortable and dream this is our happy place for good... we relax... the meds wear off!
It's my own viscious cycle.
Praying for patience again... see the lessons we learn?!
More stories of medicinal mayhem, click here.
It's a tough question. With a variety of answers in my brain. I've been thinking about this for literally months and finally found some answers.
The question, Why Autism?, is not Why Me?
I am blessed to be touched by such an amazing child and we are honored to get the chance to raise him.
Maybe some of my answers to the question will help you too!
What is the purpose of Autism?
I only have 15 minutes to write, but this idea has been in my head since meeting a variety of new parents over the last couple weeks. When talk of family comes around, they all describe their super hero by the things he/she cannot do. It makes me sad. These kids all have special gifts, it's up to us to uncover them.
When you look at your child or are describing your child to someone... focus on the strengths. Sure, the flapping, stimming, humming etc are different than what society calls "normal" but they are all part of what makes your child unique and beautiful.
Those behaviors all have a purpose. Your child has figured out that humming or flapping calms their body down when their super senses are taking in too much information and can't sort it out. I'd say that's pretty smart.
Starting a story with, well he's in 4th grade but really 1st and ... does nothing but hurt you and child. Try thinking about it as; 2 years ago he couldn't spell his name, now he can write it! That's a huge, huge accomplishment and look how far he's come. Baby steps, baby steps.
I don't dwell in the past except to gauge our progress. What ifs... Shoulda's and Coulda's are damaging words that hurt and defeat from the moment they cross your lips.
Cherish your child for the unique miracle they are. Realize the blessing and opportunity you've been entrusted with: raise an amazing human who will touch many lives!
Other positive parenting stories here!
Oklahoma... Oh, Oklahoma!
My heart aches. As a person and as a mom.
I am paralyzed by the images. I can't imagine being a child (or parent) dealing with the terror of a tornado nor can I imagine preparing our family for such a tragedy. And it is scary. I just want to hold Jake all night.
What I have to say here is not life-or-death but each and every uncontrollable event is life-changing in the lives of kids with autism.
I don't believe the weather will ever be like it was when I was a kid. I don't think summer showers will ever be the worm-scented-light-rain-with-a-rainbow-at-the-end. Winter snowfalls are now a foot or more, no longer just big flakes floating from heaven and landing gently on the ground.
Following natural disasters, I find myself scurrying around trying to brew up my own whirlwind of reassurances. I lie. I cover, I hide the newspaper and I play dumb.
Protecting fear-filled kids from the anxiety and uncertainty of the wicked weather is critical and difficult. Jake cannot function in the grips of anxiety. I barely can.
Must keep calm.
I try desperately not to let Jake see my saddness, the pictures of the damage, or hear the news. Those snapshots of devastation will be burned into his brain and transferred to our yard. I avoid all radios, televisions and computer news reports, despite my out-of-control-news-nose from 12 years of producing.
Is this the right thing?
I have no idea.
Jake's head hit the pillow tonight and I thought I made it. Even with all these precautions, his anxiety still commandeered his fluffy covers: "Are we going to have thunder and lightening?" "Is a tornado going to take our house?" "What if lightening hits our house, I have to run across the street?" "Will it catch on fire?" The questions are all strung together and firing a mile a minute. Churning up an emotional storm of their own.
The fear in his voice breaks my heart. So much anxiety in things we can't control.
The words: I don't know.
Prayers for safety, peace and complete recovery for Oklahoma families.
Just a quick little thought about Mother's Day for super hero moms.
Please remember and I truly believe that you (we) are chosen specifically for our children. There's a plan in place from before we were put on this planet. The paths we follow and decisions we make in our young lives, give us the strength we need to parent and raise a successful full-fledged Super Hero.
Keep on keeping on! You have to be the voice, support and calm for your child.
Here's link to my annual mother's day gifts from my Super Husband and Super Hero.
YouTube Jake Movies
Jake's God Cloud
Here is proof of visual super powers and an amazing, young faith!
Super Hero Jake was eating dinner and looked out the window to see this huge cloud burst between the two houses. He jumped up from the chair and ran to me yelling, "Mom, Mom you have to look out the window at this cloud it's beautiful! Is it God?"
I looked at it and remarked at it's beauty but never really saw the "face" in it. Look closely at the bright white part. "Is that a big mouth open? Does God have a big mouth?" he asked. I didn't see it still.
Then, hours later, looking at the photo, I see a face, tilted slightly upwards, between the homes, looking off to the left side of the photo with a big hole that resembles a mouth beneath a nose.
I've always believed kids on the spectrum are touched in a special way by God, as are the parents, but this is truly remarkable to me.
We've strived to give Jake a solid faith foundation for the hard-times ahead, so he can draw on God's strength, this is proof he is truly blessed and we are NOT the ones responsible. This is divine.
Tears, crying and gratitude. So fortunate to have an angel living among us!
For more stories about faith and autism, click here!
No one can stress how much a peer group is needed for your Super Hero children and most forget how much a peer group is needed for the parents.
I've struggled lately with friends who betray, hurt and criticize me and so needed a lift from those who just love.
Today, a fantastic group of ladies saved me from my slide downwards. We meet every two weeks at the Table in the Back of a little french restaurant.
The Table in the Back
I've been wanting to write this one for many months now, but haven't found the best way to do it. It is in my brain and I have to get it out. So at the risk of judgement and criticism and losing more friends, here goes.
This journey through Autism is draining and difficult but also the most rewarding trip I've ever taken. One of the harder parts has nothing to do with my kid's behaviors, but so much to do with those people I call and used to call "friends".
Finding and keeping friends who don't judge, who understand and who are supportive is tough. Really tough. I remember losing all my "mom's club" friends when diagnosis came at 2 years old... then I gained many "spectrum mommy" friends over the years... and now I feel as if that circle of friends is disconnecting, and I'm seeking support again.
Maybe it's the end of the school year, maybe I'm just completely annoying (if it is this, someone needs to tell me!), or quite possibly Jake's needs are just too much or too different for some to handle/understand.
Whatever it is, this path is a lonely plod. Don't waste time on friends who judge, question and complain. (I say to myself as well) Seek out those who will just love you for who you are and love your kid even more. Support and encouragement is what we all need! (Where would I be without my sisters? They have to love me, we're related! HA!)
There's too little time for us on Earth to spend it feeling hurt and alone. Grab on to love as you find it (sometimes its in the place you expect it the least) and don't let go. Also, it doesn't hurt to give it back as well. Helping others makes God smile.
Aaaahhhh I feel so much better now. Thanks for listening.
Funny how I wrote almost this exact story in 2011 and was worried about hurting feelings then too! Let it go, lonliness is no joke! Read "Alone on the Spectrum"
I've watched the movie and read all the books written by Temple Grandin and her mom Eustacia Cutler. Never in my wildest dreams, did I expect to one day meet and become friends with such an amazing woman.
Through my job with the Weinfeld Education Group I've been blessed with opportunities to meet many very exciting people changing the world for families living with autism.
Sitting and talking with Eustacia lifted pounds and pounds of stress from my shoulders! Someone actually gets it, really gets it, is further down the road than I, and wants to help! We share the same vision, just decades apart.
The crucial role mentors play in all of our lives is important, I've been seeking this type of support for years, then finding one who understands without judging and even offers to build your family up is quite another.
We are so blessed to have "grammastacia" (as Jake calls her) in our lives and thrilled to pass on her message here. Find the link to Eustacia Cutler's keynote address at our annual Diamonds in the Rough Conference.
Go To YouTube Video.
One Minute Miracle Archives