Some of you have known since birth that your kids have FASD and you have probably researched it for years.
We had suspicions of our kids for years, but not full proof. I didn’t spend any time trying to find out what fetal alcohol could cause in a kid.
I had read The Broken Chord long before we ever adopted and I had told the Lord, please don’t send me and kids like that. I even told our lawyer that we could not parent a child with FAS.
We had a foster girl spend one weekend with us who had FAS and at the time we only had three very small children. This experience was terrible for us. Well first of all we had never cared for a teenager and second we didn’t know this girl well. Then all I can remember is thinking that she actually acted mentally retarded, and I could not deal with mental retardation. (I thought). She was just with us for a respite weekend, but we were sure that we wouldn’t want to raise a child with this issue.
I also never felt that I could handle a downs syndrome child. However we have a neighbor who has downs and now I wish I was able to adopt a downs baby. I would LOVE IT!
Anyway, we knew something was not right with Jon, but we got him tested and nothing ever showed up. In kindergarten the tests showed he had fine motor skills delays. That didn’t mean a whole lot to me really and the school didn’t take it seriously either.
We were beginning to believe he had ADHD as he could never stop talking and could not sit in a seat. He spent his days at school, crawling under desks.
He failed kindergarten, first grade, third grade and fourth grade and no one would help me get him an IEP.
They would test him and tell me that he didn’t qualify.
I use to think they must be lying to me. How can a kid pass those tests and fail at school?
It was when they entered high school and Desi’s councilor fired her as a client because she said she wasn’t serious about getting help. She played too many manipulative games. She told me that she thought she had a mood disorder and I should get her some help.
Jon had seen a doctor in sixth grade who put him on ADHD meds. Prior to that, I was with the school of reluctant parents to put a kid on stimulant drugs.
I feel now that I was sort of blinded as this kid was not doing well in school and he should have had something. However when the school failed him, I just pulled him out and homeschooled him. At home he seemed quiet and normal.
So here we are at high school, Desi is diagnosed bipolar/ADHD and by now Jon has a diagnosis of ADHD, and ODD.
It did not take long before Jon had the mood disorder added on to his list and soon we were recommended by the school to have him tested for autism.
He did not test out for that, but did come out of those tests with an MRDD cognitive delay and lots of judgement from the doctor who thought we were too negative about what was going on with him. She also thought the teachers were too, but then she saw Jon alone and not in a group setting. Alone he could be quiet and easy to deal with, but in a group setting, he could not handle the sensory load.
Now we are in shock. Now we know that Jon isn’t really ok. Then I suddenly start researching FASD and it was like hitting the lottery of info for me.
I saw my kids and BINGO, I knew. I mean we knew that Desi’s mom was a prostitute and a drug addict. Desi was born crack positive.
We knew she drank. WE SAW HER in person, drink. That is another story.
I was just a mom, raising up nine kids and trying to love and discipline and teach my children. We enjoyed them. We dealt with all the day to day problems. I mean it was hard, but they were adopted and Desi was emotional, but we thought that maybe the cocaine had caused that.
DUH!! I didn’t talk to other adoptive parents alot. THe ones that I did talk to, were not talking about this.
I joined a couple yahoo groups and soon dropped out of them because it seemed people had more serious issues then I was having and it just made me more overwhelmed.
Well after I started looking into this, I jumped in with both feet and sponged up everything I could find. I joined up with NOFAS as a parent educator and got materials that I could bring to school and educate all the kids teachers.
Now I understood so much. It all made sense. We just need to get these kids through school and we will make it.
Then Jon turns 18 and we are starting to realize that making it through school is not the end. That is this year. We are realizing that Jon has stopped maturing about two years ago and seems stuck in all this.
We are seeing that Jon cannot keep up with kids his own age. Jon does not understand things often and he can’t absorb things without telling him over and over and over.
As time goes on, reality is hitting me in the face. Jon is disabled and he may never be able to fully take care of himself.
I find myself angry about this and not really understanding why this upsets me so. Then I realize that I am actually grieving the process that you normally go through with a teen/adult. We aren’t going to see that launching off and I am in grief for HIM and for US.
I am looking around. No one understands this. I feel quite alone. Not all FASD kids are the same. Desi is a much higher functioning kid and though she has the serious anger issues, she manages things a lot better. She is in College prep at school and her real big issues are organizational and memory, which they give her help with in her IEP.
Jon is in special education and can’t even handle that. He is like the girl in 50 first dates. Every day you have to retell him the same things or he won’t know them.
Desi can remember her meds. Jon rarely ever remembers them and if he was to be on his own, he would fall apart in no time.
We haven’t really settled on how we can handle this yet. Jon has one more year of school. We just want him to graduate.
We know that there are not any group homes for him, not another family for him and no real support systems out there. We can’t get him an FASD diagnosis because he does not have facial features.
We have no proof that his mom drank. We just have a kid that hit the bulls eye on every single symptom of FASD.
So now what?  I started this blog to chart that path. We take life one day at a time and where the Lord is leading us is where we will be going.
Embarking upon the transition into adulthood with FASD is where we are at today. If you would like to join me in this daily path, I would love to have you along. Maybe we are walking this together. Maybe your child is younger and you already know that he or she has FASD. Maybe you will be more prepared then I was.  Possibly it was the way God wanted it to be for me. If I had known earlier, perhaps I would have seen my kids differently back then.
Today I find it hard not to see an FASD behind every bush now. I see so many people that could possibly have this. So in some ways, I am glad that my knowledge was limited when they were children. We just enjoyed them being children and we were not scared about their future. We all had vision for where we were going then. Now I see that sometimes that vision is to just get through a day without anything bad happening, whether at school, work or just out hanging out with friends. Every day that we mark in a positive way is a victory. One for our side. Today is all we have. Tomorrow is in God’s hands.
I can be reached @ kidznlildogz@aol.com
  1. Cathie King says:

    I have just added your blog to our blog tab in the links section of our support group website. I do hope that your insights will help others in their daily travels in the FASD world.

  2. FASD is a terrible but highly preventable developmental disability. Our organization fights to prevent FASD through education and awareness. I am adding your blog to our links in hopes that your struggles will be a wakeup call for others that this difficult condition can be prevented by choosing not to drink the 9 months you are pregnant. Please consider linking us as well. We are attempting to create a strong network in the community in preventing developmental disabilities.
    Our blog: http://coalitionforprevention.wordpress.com

  3. My name is Sheron Chisholm, I am a professional health coach for parents who have children with FASD, a registered nurse and adoptive mingle mother of three children with FASD.

    I am planning a pilot webinar series on the topic of “Letting Go and Discovering Your Passion in Parenting. The topic is mastering grief.

    The end goal of the series is how to forgive self and others for parenting mistakes; freedom in parenting; healing and release of suffering. I am interested in knowing if you would attend such a webinar series, if not why.

    Please respond to sheronchisholm@gmail.com and please leave your email so that I can sent further information about the webinars.

    Thank you.

  4. Allison Brideau says:

    Is there anyway I could get a photocopy of this blog as most of the information in it pertains to my daughter who has FASD. We are going through paperwork for support in both work and at home in an independent setting and this may help to get her more services. I cannot get it to print at all on my printer. she is quite high functioning but I find most people do not see the limitations which come back and haunt her and have caused her to lose out on services before.

  5. if you send me your e-mail I will be happy to send it to you. Sheron Chisholm

  6. Allison Brideau says:

    I was able to print it yesterday and I so appreciate the information. I just hope that it helps in her new support forms that we are in the process of filling out. She really could use a job coach and I think your blog speaks to why!!!

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