Category Archives: Health

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About that quilt…

“About that quilt.” I know, the title is rather cryptic.  It is not at all descriptive.

And that’s okay.  Last Spring, I wrote about the unfinished quilt. Remember? I wrote about how in a situation like ours, we were constantly removing pieces of the quilt and trying different things in their place.

Since we moved last summer, we have made incredible changes.  Our family dynamic has changed.  We owe this simply to the move into the city from our small community.  Jobs changed.  Stress levels are reduced. We now have four kids in college.

So what is different?

Simply put – Everything.  This time when David is discharged, he will be coming home to a new house he has never lived in.  He will be starting a new school.  He will have access to activities that weren’t available in our small town.  He should have access to a greater range of supports, and all of this means less travel for the family.

No Perfection Expected

I don’t expect perfection and here is why:  We are going to experience bumps in this journey.  What life is without bumps?  But we are making a conscious effort to view the things that happen in David’s life more as symptoms of his condition and not behaviors.

An explanation.
With the Fetal Alcohol Spectrum Disorders diagnosis that we received in 2016, came a lot of research.  Number one thing to remember is that David’s brain is physically damaged.  Most specifically, the area that controls executive function and emotion response.  Meaning, those things that you and I take for granted, he will never fully understand.  Frontal lobe brain damage interrupts and affects the emotion response, critical thinking and self-control portions of the brain.  What most, including us at one time, view as behaviors, is actually a symptom of the damage in his brain.

It has been a while since we posted, so look for more things coming on.  We will talk about the decision to deny our appeal of the Developmental Disability services decision as well as many other things.  Other topics will include developmental vs chronological ages, activity levels and other things.

Cheers, Merry Christmas from our family to yours.

Where is the failure? Thoughts on FASD

A year ago, David was diagnosed with Fetal Alcohol Spectrum Disorder (FASD). It’s a developmental disorder he was born with because of the birth mom’s drug and alcohol usage during the pregnancy. If he had been diagnosed before age 3, he would have DD services. Right now, because he didn’t have that diagnosis, he doesn’t qualify. It is their belief that he is capable of being entirely self-sufficient. and he isn’t. He may be 16 physically, but he is about 6 or 7 in most ways, and 8 or 9 in others. In every other way, he qualifies for DD services.  Except, depending on the day and his affect, his IQ scores too high.  I make the argument that an IQ score alone doesn’t indicate self-sufficiency.

FASD

 
Initially, for the first 9 years, we fought to keep things “normal” for him, which meant that while we saw doctors, we did everything at home. Right up until he started increasing the level of violence toward others. In my mind, that includes everything that has happened.  This blog was started about that time.  So there is a complete history of our time, my thoughts and everything else since then written in these pages. All of the struggles, all of the heartache, both for David and the rest of the family.
 
as a result, we subjected the rest of the family, and David to so my more than they needed to experience. So I am left wondering, did we fail the rest of the kids? did we fail David?
 
All I can do, is attempt to make life better.
 
As a dad, for a long time, I saw my role as the fixer.  I can’t fix what is wrong with David.  I wish I could fix what is wrong with the system.  It has cost me my health.

Do it again?

People ask me, “if you knew then, what you know now, what you know now, would you still adopt?”

Yes.  Why?  Because his life, and thus our life would be entirely different.  He would have had support at home.  We would have had support at home.  Is it our failure for not fighting harder for services?  We adopted him locally.

David deserves better.  All kids deserve better.

Better

In my mind, FASD (Fetal Alcohol Spectrum Disorders) are the most preventable Developmental Disorder known to health science.    It takes so little to prevent this condition.  All the mom has to do if she is trying to get pregnant, is pregnant or even THINKS she is pregnant, is stop doing the drugs, stop drinking, and get prenatal care.  David will have to live with what his birth mom did to satisfy her own selfish cravings.
Yes, I understand that addiction is very difficult to live with.
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Don’t give up on me.

With those few words, “Don’t give up on me.” David ended our phone call tonight.

Dad, don’t give up on me.

I assure him each time that I won’t.  He is our son and will always be our son.  See today he admitted to assaulting his mom.  If he had been adult, he would have been guilty of a felony.

Look closely, this is not what people with developmental disabilities should go through

As it is, he is in a detention center where he has been since March 27th.  On Friday he will move to what is called a safe bed, which will allow him a bit more freedom, as well as a chance to get back on his medication.  (why the detention center for youth doesn’t give him his medications like they are prescribed is a fight for another day).  Then next Tuesday, he will be moving to a Youth Home in another city.

See.  For the longest time, we (his whole team) has referred to his condition as a mental illness.  And really, it’s more than that.

It’s a developmental disability.  His brain was harmed during development.  There is no “cure” for that.  There is maintenance and long term support. His condition is known as FASD  (Fetal Alcohol Spectrum Disorder)  it’s a condition visited upon him by his birth mom.  Because she chose to do drugs and drink while she was pregnant.  He went through withdrawals immediately after birth.

So with the upcoming placement we are hoping that he will get support.  That he will again stabilize and become the best version of himself that he can be.  He knows his brain is different.

Seeing him locked in the detention center has been difficult.  To have him in waist chains and handcuffs is very difficult to see.  This is not where he needs to be.  In truth, there isn’t really a place for the kids like him, kids who will grow into adulthood without a place in their world where they can be the best version of themselves.  Places that aren’t jail.

He needs ongoing support.  His executive functioning isn’t what the average person has, and he needs an external subconscious telling him to think about what he is doing.  To reconsider the actions he is undertaking.  This is done with staff support.

Don’t give up on me.

It’s not free.  It’s not cheap.  But for his world, it will be infinitely better than being in jail.  In jail, he will be even more vulnerable to the influences of more “powerful forces and people” who would take advantage of him.  He desperately wants friends, even though he really doesn’t understand the concept.  The people he calls his friends are not good for him, and influence him to do things that are wrong.  Support staff can help with that.

I could see David being a video game tester.  He could be very successful at that, and he would never have to leave his house to do it.  Success for David will look very different from what his peers will experience.  And you know what?

That’s okay.  Nothing wrong with that.

So David.  I say this to you.

We won’t give up on you.  Don’t you give up on you either.

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