Tuesday.

This post has been percolating.  Its actually 3 posts I’ve been wanting to write, but have been swamped at work and home so haven’t gotten there.

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I have an online friend who I know from a Moms group.  Not specifically a autism group, its not all kinds of people in it.  But there’re definitely those of us with SPED kids. Her 9yo has Autism and a seizure disorder.  They’ve gone the route of NeuroPsychologist instead of Biomed/ABA that we have. (as always, no judgement here, everyone does their very very best for their kids).  So her kiddo has been on risperdel, prozac, seizure meds, assorted mood stabilizers.  For the most part until recently those’ve been all he needed and  he’s been in a special school to deal with behaviors. She’s been concerned lately about his behaviors, loss of overall cognitive skill,  and believed that maybe he was emerging as bipolar on top of the ASD and seizures, mostly because of what she verbally described as manic.

Then she posted a video. Which I have her full permission to share. 

Her son’s behavior is not that far off of Dominic’s when he’s in a full yeast flare.   I deal with the lack of eye contact, the multiple repeating of requests, the having to work through a brain fog and babble pretty much every day.  Certainly not all days are as extreme as her video, but getting that kind of behavior out of Dominic wouldn’t phase me.  I have different tools to deal with it than she does, and Dominic weighs about half of what her son weighs, so he’s physically easier to do hand-over-hand with.  But for all of you, this is a quick glimpse of what our days are like.  

Can you imagine when the 1 in 110 children with Autism – children who at age 6 and 9 and 18 (that I’ve personally seen at Alpine…) have this level of function (or lack thereof) come to adulthood with these same brain injuries?  There will be whole new industries built around group homes…

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I read this article yesterday. It should be required reading for all parents and parents-to-be.  For me, tho, it illustrates an interesting in between. While Dominic does not have a terminal illness by a long shot, he has a life altering brain injury.  I don’t have to accept that there will be no future for him, but I do have to accept that his future is somewhat undefined right now.  IF we get him more verbal, then maybe he’ll be independent.  But we might not.  He might be one of the 25% of autistic boys who develop a seizure disorder when they hit puberty.  I don’t get to count on him going to prom in high school, or going to college, or even getting a job. Those milestones for us fall in the category of “maybe, if you fix him enough now, just maybe you might get to see that milestone”.  It’s a very nebulous way to live, and its disconcerting, and uncomfortable, and makes other parents uncomfortable to be around – because after all, they still have the comfort of knowing they have those milestones coming.   And if I’m being honest, still makes me REALLY mad.  

And as an aside, from a blog I just linked on my list.  I give you the top 5 reasons you should Never Piss Off an Autism Mom. So so true.

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I have found, through the internet, my best support groups in this journey.  The other moms going through the exact same thing.  And I’ve said it before here, and I’ll say it again – they can’t shut us all up if we shout together.

So to quote from my new friend Kelly  who after I posted on her note "I don't know you, but Thank you", added me to her friends list and said "you know me now"

“Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.”