Archive for the ‘When the grief is unbearable’ Category


Jon and Desi  2011

Yesterday we went to apply for DD services. It was a bit hard because Jon got ODD in the middle of it and argued with me over stuff that I was telling them.
When we got done, the woman stated that they would look at his qualifying factors and decide if it was a matter of “won’t, not can’t”.
My insides just CHURNED! Lady you have no clue. My heart was once again ripped out from my chest when someone did not understand my son.
Today the school teacher sent me some help and I sent it over to the DD lady.
Terry — Below are my comments in regards to Jon’s functional abilities based on the 7 Life Activity Areas:
SELF- CARE
  • For Prescribed Medications:
Jon is unable to consistently obtain the correct dosage of his medication. He is not able to identify the medications he takes or the correct amount of each medication that he takes. Jon is not able to understand the implications of not taking his medications. He does not remember to take them — he has to be given his medications each day by a parent or sibling in order for the correct medications and dosages to be taken.
(Added info by Terry Quinn-Jon has to be watched to see that he will swallow the medications or they often will be stuck in his pocked and land somewhere in his room.)


SELF- DIRECTION
  • Jon does not maintain healthy relationships. He is easily talked into inappropriate situations — skipping school.
(Added Comment by Terry Quinn- Jon will go with a stranger if the stranger offers money. This did happen one time.)
  • Jon ‘reacts’ to situations in which he is frustrated or uncomfortable. There have been two occasions at school where Jon has slammed doors and hit people causing them physical harm. He also throws items. Jon reacts without processing the possible results of his actions.
  • Jon is not able to independently arrange medical appointments. He is unable to identify the names of his doctors or the way in which they can be contacted. Jon cannot remember the date and time of appointments.
  • Jon does not follow through with decisions. He makes appointments to meet at certain days and times but is unable to remember the arrangements therefore does not follow through. He also jumps from one task to another without fully finishing the first.
  • Jon does not comprehend the cause and effect of decisions. This is a documented part of his disability. He will spend an entire weeks paycheck on a tattoos without regards to the fact that he will then have no money to spend for the rest of the week.
  • Jon continually repeats inappropriate behaviors in spite of regular consequences. He is has multiple suspensions from school for repeated behaviors. Another example is Jon having multiple no shows at work — if it were not for the communication between Jon’s mother and his manager he would not continue to have his part time job.
ECONOMIC SELF-SUFFICIENCY
  • Jon is unable to appropriately budget his money. He cannot approximate how much money needs to be saved in order to pay bills throughout the month. Jon lives ‘in the moment’ and does not understand that he needs to save money for expenses later in the month or even later in the week.
  • Jon needs frequent prompting to be on time. He has to be prompted minute by minute to get ready and be ready on time for his ride to work and school — example — Jon get dressed you have 10 minutes; Jon brush your teeth you have 5 minutes; Jon put your shoes on you have 2 minutes — and he has to have a count down while performing tasks … ex: Jon you have 2 minutes left to finish getting dressed. He is often late to class because he gets distracted and loses all track of time to get to class — a special plan had to be created for Jon because of his excess tardies to class.
  • Jon has had numerous no show/no calls to work. He would have lost his job long ago without the open communication between his mother and his manager.


I am very grateful to Jenn, Jon’s teacher for all the help that she has given to us. She is an angel.

However last night Jon came home totally stoned out on pot. I was shocked that he would come home in that state. He usually tries to hide this behavior, even though we have highly suspected that he was doing it.

I was flabbergasted! I have a 17 year old daughter, Deserai, whom I can’t set an example, that it is ok to live here and get high. So I had to send him out. He is likely living at his drug friend’s home now.

I feel like I am loosing one child right now, and I could not stand to loose two.

I know Jon is helpless to take care of himself forever, but he lives at this drug kid’s house anyway. The only thing he wasn’t doing is sleeping there.
Then too, sometimes he snuck out at night to be with this guy.
Right now Jon is in an avalanche of danger and only God can help him. He won’t listen to anything I say or do. He is determined to have his way.
He could potentially loose his job and I don’t care right now. If he looses everything, will it save his life?
I don’t know. I don’t know if it is possible for him to recognize when things are totally ran out.
Am I going to have to live a life with him as an “in and out drug addict”?
I can’t. I am not physically strong enough to handle that. He would have to play that out somewhere else.
Am I throwing him to the wolves? Jon was thrown to the wolves the day his birth mom got pregnant with him and never stopped drinking. I didn’t do this to him.
I have raised him and fought for him almost every day of his life. Nothing has ever been easy for Jon and I. It has always been painful.
Why did God pick our home for a child who is so painful? Because he needed someone.
He needed someone who would love him in spite of the pain.
I guess even though I have suffered greatly, it was a good choice for Jon.
The theory that these kids are self medicating is probably true. However drugs are not a safe way to self medicate. They can and usually will lead to other usage, possibly alcohol and worse.
They can lead to death also, so how is that a good thing?
Drugs might be self medicating, but they are a path of destruction and these kids don’t have the ability to self regulate that. They are not social drug users.
The addiction to drugs will cause people to do about anything eventually to get them. Stealing? Jail?
Oh also, I recently saw a video that shows that it is PROVEN through MRI’s that marijuana causes brain damage in teens up to 25. Their brains are still forming.
So they are damaging an already damaged brain. I have noticed lately that Jon has been a lot worse. At times he seems almost like a vegetable that doesn’t care about anything, doesn’t want to do anything, and does not understand much at all that I am trying to help him with.
Life on earth is often about suffering something, sometimes.
Somehow, I need to find peace with this though, as it is tearing me up.

Sadly this is the course for many parents of children who have FASD. They were born drug addicts and when they pick up that drug later in life, they take off where they left off in the womb.

How much more do I now want to spread this message, that it is so unsafe to drink while pregnant. If you are pregnant and drinking, you are sentencing your child for life of pain. Please, PLEASE hear my heart. Give your child a chance. This world is not an easy place to be in when you don’t have that against you. Having FASD just makes it that much harder.

This mom has a huge ache in her heart tonight and all I can do is pray. That is a big thing though, for I know that God gave Jon to us and therefore, I have to trust HIM that God has a way out of this mess for Jon.

Lord, please put your biggest and strongest angels with Jon now. Stop him from any danger. Deliver him from the desire to use drugs. Open his brain up to see the danger he is acting out. Give him a chance God. Please, give him a chance………

kidznlildogz@aol.com

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