The answer should be yes. Not "how can I get my loved one help?"

Category Archives: Health

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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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Compliance – Continued Medication Issues

Compliance – Continued Medication Issues

We are in week two of David’s not getting his medication as prescribed.  Thus, he is out of compliance, though it appears to be a systems issue. 

Either give him the medication he was prescribed or tell me how to fix it.  It’s not difficult.

Today, I contacted the detention unit, asked to speak to the medical person, and was transferred to him.

When I asked what the issue was, the nurse said “he is not in compliance.”

I asked, if he was refusing to take the medication, and rather than providing me an answer, he said “who is the probation worker?” (I use probation worker as a loose descriptor for the person involved in David’s case.)

I explained who we are working with, and gave the nurse that information, as well as contact information for the worker.

The nurse then said “thank you” and ended the call.

So I called and left a message for the probation worker.  I also called our watcher with Social Services.  (the person from Social Services who is keeping an eye on the case)  Since her voicemail isn’t setup, I had to draft an email. In reality, I don’t mind sending email.  I prefer that in a lot of ways because it leaves a trail and lets us hold people to their word. It also allows people to hold me to my word.

Reaching out to the chain of command

We then reached out to the top person at the correction center for youth.  The superintendent guy.

He took my call, I explained the issues, explained the steps that I was trying to take to resolve it, and that we had given all new prescriptions that were filled at the pharmacy since they don’t do that for kids in David’s situation.  In addition, I explained that David continues to be out of compliance and I couldn’t get anyone to help correct it. As well as, I told him about how it’s been two weeks since David had all of his medication. That you can see the agitation in his body.  David isn’t sleeping very well.  He for sure isn’t getting the REM sleep that his body needs.

Possible issues related to medication denial

All of this bodes for problems.  Tentatively, he is due back in court on Tuesday next.  If foster care is the plan, he will have to spend his first month there getting his body attuned to the medication.  Same will happen if he goes to residential care, or another facility placement.  We will see an increase in behaviors related to his mental illness.  He will be easily agitated and angered for no apparent reason.  There will need to be an increased vigilance in those who provide his care.

It’s simple really.  Either give him the medication he was prescribed or tell me how to fix it.  It’s not difficult.

Because medication compliance works two ways.  Please get in compliance with the medication that David needs.

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