So Whatever Happened with the Autism Eval?

posted in: Special Needs | 9

The results of the autism evaluation and where we go from here.

Sometimes I don’t even know where to begin.

You know how frustrated I was with the 18 month wait for his first visit to Autism Center, the following visits, cancelled visits and visits where we just talked while he played on an iPad (provided by the Autism Center). They won’t do an autism eval because he has FASD.

 

So where are we nearly two years after the referral? Right now, pretty much where we started, but a few good things have come of this incredibly frustrating experience. While going through the evaluation process, he had some very extensive testing done. The testing has helped Chuck and I in our understanding of some of his behaviors and helped to change our expectations of him. It has also given ammunition information to give to the school. It is kind of hard for teachers to deny his disabilities when they are written in black and white on paper by experts at a renowned children’s hospital.

So that’s good.

In addition, he is now on a waiting list (no surprise there) for 10-13 visits for ongoing work at the biobehavioral program (yes, that’s going to be a lot of driving and missed school). That’s the great news.

The infuriating part about this? Adoption Support* won’t pay for these visits. Despite they fact that Washington State Adoption Support agreed to pay for all of his health and mental health costs until he turns 18, they won’t pay for this. In fact, he only qualifies for these services through our private insurance. The state’s idea of caring for his mental health needs is to send him to the free and low-cost mental health organizations in our county. Yes, the state is willing to pay for free services for him. Isn’t that nice of them?

You might also remember his health insurance refused to cover a walking cast for his broken ankle because we didn’t get it pre-approved.

Somehow these details weren’t mentioned in our extensive adoption training through the state.

Right now, we have made huge accommodations in our home for our son. Some seem ridiculous, but all are helping us have a more peaceful family life.

Tomorrow we have our second IEP meeting for our son in a month. The doctors and SLP at Children’s were adamant he get more help at school. They want him to have more accommodations and an aid. I have the feeling this is going to be an uphill battle. Many days I feel way too tired to fight this battle.

* Feel free to ignore the references to the difficulty finding mental health care and the limited resources. Fourteen years ago we were told by the state those services would be paid for in full, no references to limited funds and providers. 

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9 Responses

  1. I feel so frustrated for you! Wish even more that I knew of an advocate for FASD who could go to bat for you… tomorrow. Whew. I’ll be praying for you and the meeting.

    One of my favorite phrases in meetings / times like that is a firm/calm, “That is not acceptable.” Followed by a silent stare.

  2. Thank you for sharing your struggle. Our youngest was adopted through the foster care system. We have had her since birth, and she is now 4. She has been diagnosed with FAS. We struggle daily, and I am very afraid when I think about what her behaviors will look like in the future. Our parenting styles sound very similar, and it is clearly not working with her. I am so tired, and at a loss for how to help her function. Even though we have mostly homeschooled the others, we are going to try to start preschool in fall with the hopes of giving me a break for the morning. I am prepared that it may just make things worse. (She has a lot of anxiety, esp. with regards to separation from me.)

  3. So sorry – we should not have to fight this hard to get services our children need. It doesn’t help that every state is different, making it harder to share information. One thought – at the IEP meeting you might ask if the least restrictive environment is truly the local school, especially if his behaviors affect him at school. We recently went through an evaluation with our 18 year old (fetal alcohol, autism and a bunch of other diagnoses) because he was having so many issues at school. The school determined that the least restrictive environment for him would be a private day school. Therefore, the school district will pay for that school, along with door-to-door transportation. We are hopeful that the services provided at his new school will help him. It took a lot of help from a very dedicated school counselor and a team of specialists to get us to this point. Praying for you in this struggle.

    • bakersdozenandapolloxiv

      Thanks for the suggestions. His behavior at school is (more or less) fine. The worst he does there is go into “shutdown mode” when he is overwhelmed or confused. The worst he does is put his head down on his desk and refuse to talk. Definitely not something that they would send him somewhere else for. Because he behavior isn’t disruptive, he gets overlooked and is simply seen as not working hard enough and not putting in enough effort.

  4. I don’t know if Whatcom Discovery has been brought up as a possibility for your son. The school district often refers kids there that are considered EBD (Emotionally Behaviorally Disordered ). Most administrators won’t tell you that this place exists. You have to know it is an option. I don’t know what qualifies you to attend there but the school district has to make a referral.My son just graduated from there and it ended up being the best place for him. They are set up to deal with extreme behaviors and have small class sizes with lots of adults. Of course there are also drawbacks. I have found getting an aide in middle school who isn’t monitoring more than a few kids difficult. I have always found using the term the safety of the staff and safety of other students to be a key phrase in getting them to listen.

  5. I am exhausted just reading your post. As a parent, I worry (and get tired of the battles) for just the ordinary stuff that happens. I can’t even imagine how difficult this must be on a daily basis. There just *has* to be a better way for parents to help get the assistance they need!

    • bakersdozenandapolloxiv

      You would think…but I honestly think just the squeakiest wheel gets the oil…It all seems so impossible.

  6. I am so sorry you are going through this – it sometimes seems as though the system conspires to frustrate you at every turn so you just give up the fight. At least that is how I feel about my 3 year fight with the school district. Every little service provided I have had to fight tooth and nail for. My daughter’s first grade teacher “diagnosed” her with ADHD and that is the only lens through which they look at her. They have very low expectations, allow behavior that she would never attempt at home because after all she cannot help herself (I got a detailed observation report where my daughter was walking around the classroom as the teacher was teaching, eating her snack and drink, chit chatting with her friends etc.). This does not get re-directed because she “has” ADHD and the school has been pressuring us to medicate her. I have 4 kiddos, have an background in education and I believe I am very realistic about my kids strengthens and struggles, and out of all them, this is not the one who would be described as having ADHD. She had a IEP based on speech delays, and a few months ago we had an IEP meeting where they determined they needed to continue to provide speech services. Two months later after I requested an in depth evaluation, all her speech delays had magically been resolved and she no longer qualified for services under the speech category! I hate conflict, want a good working relationship with the school, but we are now having to retain a lawyer to do the fighting so our daughter can get the services she needs.

    I can just imagine how exhausting and draining your fight is as you have been in it much longer and for more serious issues. Prayers for continued strength to continue the good fight and that you would find an advocate to help fight for your son so he can finally get the services he needs and deserves.

    I am so sorry you are going through this – it sometimes seems as though the system conspires to frustrate you at every turn so you just give up the fight. At least that is how I feel about my 3 year fight with the school district. Every little service provided I have had to fight tooth and nail for. My daughter’s first grade teacher “diagnosed” her with ADHD and that is the only lens through which they look at her. They have very low expectations, allow behavior that she would never attempt at home because after all she cannot help herself (I got a detailed observation report where my daughter was walking around the classroom as the teacher was teaching, eating her snack and drink, chit chatting with her friends etc.). This does not get re-directed because she “has” ADHD and the school has been pressuring us to medicate her. I have 4 kiddos, have an background in education and I believe I am very realistic about my kids strengthens and struggles, and out of all them, this is not the one who would be described as having ADHD. She had a IEP based on speech delays, and a few months ago we had an IEP meeting where they determined they needed to continue to provide speech services. Two months later after I requested an in depth evaluation, all her speech delays had magically been resolved and she no longer qualified for services under the speech category! I hate conflict, want a good working relationship with the school, but we are now having to retain a lawyer to do the fighting so our daughter can get the services she needs.

    I can just imagine how exhausting and draining your fight is as you have been in it much longer and for more serious issues. Prayers for continued strength to continue the good fight and that you would find an advocate to help fight for your son so he can finally get the services he needs and deserves.

    • bakersdozenandapolloxiv

      Yes, I don’t have it in me to fight everyday…so I don’t…but when I do, I fight with everything I have.

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