UNRULY??

Posted: February 1, 2012 in 2012, Raising Hearts, UNRULY??

That is what  the gentleman from DD services called my son today.

I have not shared all that we have been through, as I sometimes feel that I get tired of repeating the same old stuff.
We have had a long string of challenges with Jonathan. He isn’t accepted by too many friends and the ones that do accept him, don’t seem to have their lives too together either. Most of them are doing drugs.
Jon does not have cash in hand to do this stuff, but it appears that his friends are only too glad to share and enable him.
We have tried to put him on lock down for a while to stay away from his enabling friends and stay clean for a while.
It is not working well at all.
Jon escaped out his window on Saturday and left for the whole day. He left his phone at home so I could not track him.
Then on Sunday he walked right out of the house, in front of us, and took off with a kid that we know is doing dope.
THat night my husband was so upset that he threw his clothes out.
We were just in shock that Jon just left when we told him not to. We feel helpless to stop his behavior at all.
Of course it was not long before he was begging me to come and pick him up, as he left without a jacket and wanted back in the house.
We just throw up our hands into the air and say “we give up”.
On Monday, with advice from Jon’s teacher, I called DD services to see if we might qualify for their respite services. We were spent totally, emotionally and physically. Couldn’t someone help us? Just take Jon for a few days so that we could breath?
They did send me paperwork out to fill out and see if we can qualify for respite care.
The case manager called me today and talked to me, since I had stated that we had a family emergency.
Since Jon does not have an official diagnosis of FASD, his conversation to me wasn’t the best.
He called my son “UNRULY” and told me that they can’t help him. He said that since Jon was still under a FCCS subsidy, that we have an open case with FCCS and we should contact them to get us help.
Well I  am not sure that this is a real open case. We get subsidy for his adoption that ends when he graduates, but he is not a foster child. If we call FCCS, then we are the ones who will be investigated and I am not fond of doing that. I have nothing to hide, but just don’t like them in our business. I still have one minor in the house who has had some pretty big issues, as she also has FASD.
We talked for a few more minutes and I could see pretty plain that this man did not understand FASD at all. He told me that Jon’s next step was conduct disorder and well I have been down that path before when he was kicked out of school, and got a felony for slamming a door on a teacher etc. He had to attend this special Buckey Boys Ranch school for the rest of the year and they told him the same thing. They practically told him he was headed to jail.
Nothing anyone tells Jon makes a difference. He has brain damage. You can’t tell brain damage to change. He needs a miracle from God for that to happen.
Jon might be unruly to some people, but honestly the term bugs me quite a bit.
It bugs me because Jon doesn’t want to do what he does, or be who he is.
Jon does not know how to stop being Jon.
 It is a weird place to be in when you can see the disability side of stuff and you can’t stand the kid you are living with, but you love him so much that you can’t deal with anyone else calling him names.
I have decided to take a chance on children’s hospital genetics clinic and see if I can possibly get Jon diagnosed with FASD. I don’t know what measurements that they use. Maybe he has some facial stuff that I can’t see. AA kids don’t have thin upper lips in general.
 Jon has absolutely every symptom of FASD and to almost the deepest level. He might not be MR yet, but he is close and in some ways worse. He needs an external brain to take care of him 24/7 and this is for the rest of his life.
  Even his newly opened case with SSI and SSDI has the statement that he has to be reevaluated in three years in case he is no longer disabled.
Would that all parents of FASD kids could see that happen. It sure would give us some hope, wouldn’t it?
 FASD is an invisible disability. If Jon were in a wheel chair, people would bend over back wards to help him. Instead he has brain damage that people can’t see on the outside and what they do see, they interpret as unruly. 😦
AS it is, we don’t know where we are going most of the time or how we are going to get there. I don’t know how people do it that don’t know the Lord. I would sink into a hole and never want to come out. I know that God always has an answer and even though it looks really bleak right now, there is an answer for Jon’s future.
The Lord says in the Bible that He knows the plans He has for us. Plans for Good and NOT for evil. Plans to give us an expected end.
We are claiming that for Jon. Plans for GOOD!!  Only God can make help Jon right now. We are expecting. It has been too long with all this pain. It is time for some Joy. 
Lord send us JOY!  Send the strong angels out to care for Jon every day and send all the Joy that you can, with them. Thanks.
Comments
  1. It can be so very incredibly hard to get people to understand the ramifications of FASD. I really sympathise with your predicament. People usually say asinine things like; “She looks perfectly fine, and she’s so pretty – It must be enjoyable to work with her the way you do” in reference to my daughter. Even the people who should understand the most, like pediatricians, have no clue what the functional difficulties actually are. I recently fired our pediatrician, who just happens to be an Assistant Clinical Professor of Pediatrics at UBC. She had absolutely no idea how this specific spectrum disorder affects brain development and continually provided useless advice and insisted on comparing my daughter’s functional problems with other patients of her’s who have cerebral palsy. I challenged her on her knowledge-base and was shocked to discover that she has had no specific training or education related to FASD in the past 10yrs we’ve been seeing her. No wonder she never knew anything about current research. or what benefits and services were available to us. She would often insist that I should be able to get ‘extra’ funding for my daughter’s treatment just by asking for it. She had no idea of the severe lack of any qualified professionals in the field. Even if I was a millionaire, there is still nobody available to seek out. All local therapeutic behavioural services seem to specifically exclude anyone with a true FAS designation.

    If you want to find out about diagnosing FASD check out the file named; Diagnostic Guide for FASD – 4 Digit Code – guide2004.pdf that I have uploaded to Windows LiveDrive.

    https://profile.live.com/cid-8ac0a81584609ea0/#!https://skydrive.live.com/?cid=8ac0a81584609ea0!cid=8AC0A81584609EA0&id=8AC0A81584609EA0%21271&sc=documents

    There’s a few other FASD/ASD files there as well. My 11yr old biological daughter is confirmed as having an FAS designation with a 4 digit diagnostic code of 4-4-3-4.

    Speaking as an Atheist I can say that for me, looking forward to new diagnostic methods and the promissing new studies into brain plasticity keep me going. No matter what one believes in theologically, it still just comes down to HOPE. Hope for a marked improvement – what more spiritually minded people may refer to as a miracle – is what keeps me trying at the harder times.

  2. mabiclark says:

    He sure sounds like classic FASD. Do you have pics of him as an infant or toddler (not sure how young he was when you got him). Many kids outgrow the facial features by age 6, but they will look at pics during a diagnosis also. But more than likely, he is one of the 80% on the spectrum who have no facial features and are ARND instead of FAS. FAS is the only diagnosis you can get without the alcohol confirmation, but they have to have the physical features for that diagnosis. It would be so helpful to have the diagnosis, you can usually get more services, even though people still don’t understand FASD at all!!!! I buy about 20 copies of Damaged Angels a year and give them away to people like our Pediatrician, my OB/Gyn, our DD case worker, teachers, etc. We are in a super hard spot with our 12 year old with ARND, and without our faith in the Lord, we would be deeply depressed- He is the only thing keeping us above water. Praying for you.

    • Thanks for the good idea to bring in pictures. I will look some up for that.
      I have Damaged Angels here too. Life is not easy on this earth with FASD kids and alot of days I sure look forward to heaven, lol, but I know for a fact that the Lord put Jon in our lives and I do expect Him to take us through until then. Blessings to you and your son. Terry Quinn

  3. rosewilting says:

    Thank you for creating this blog!!!

    True people of faith dealing with an uneducated public. Your comments give me encouragement. Our daughter never had facial indicators but there were plenty of other issues. We’ve spent so much time with specialists, and them with the CST at her school.
    They refuse to see it even though it is clear from her test scores and neuro-developmental ped.
    So she comes home exhausted, frustrated and determined to pick a fight to release some of the pressure.

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