I am an Advocate, Hear Me Roar

posted by Momo Fali on August 12, 2013

This is going to seem jumbled for a couple of paragraphs. Please bear with me.

Tomorrow morning, after two months of research, paperwork and relentless phone calls to the Ohio Department of Education and our local school district, my 11 year old son will finally get a psych evaluation. If things go according to plan, he will be diagnosed with an autism spectrum disorder for the third time.

Why do we need a third psych evaluation? Because his autism was never added to the Evaluation Team Report (ETR) at his private school. Without that diagnosis made by a psychologist at the local level and typed on his ETR and IEP (in the public school district in which he has never attended), he is not eligible for the state’s autism scholarship.

Without the autism scholarship, we can’t send him to a new school. Given the reports from his last one, returning is not an option.

Confused? Exactly. There have been six providers involved in this one request for reevaluation (for a disorder with which he’s already been diagnosed). Without the assistance of a very patient administrator and the advice of parents and advocates who have traveled this road before me, I don’t know that we would have found our way.

What I want to know, is what happens to the special needs kids whose parents don’t have the time, energy, resources, or resolve?

I have spent 11 years advocating for my son; I thought I knew what I was doing. I didn’t. I was lost in this process and I was trying REALLY HARD not to be. You can’t tell me that kids aren’t falling through these gigantic cracks.

I know there are good people who are trying to fix the system and I thank them for that. Everyone should thank them for that. My kid will someday be mingling about in society with your kid and it would be great if we could ensure everyone’s future by giving them the best individual education and services possible.

So after I accomplish this latest task I am making a promise to pay it forward and advocate on behalf of those who can’t. I am going to use my voice.

And, it WILL be loud.

    Comments

  • Melisa


    You are an awesome mom and a beyond excellent advocate. People better look out!

    I’m sorry you have to work so hard to get all of this taken care of so he can be placed in the right environment, but at the same time so proud of you. You accomplish amazing things. xoxo

  • Lisa Noel


    I wish I knew how to use my voice for effective change. So so many kids ARE falling through the cracks.
    After years we finally got my oldest a 504. He doesn’t qualify for a iep because we stay on top of things and make up for his adhd so he isn’t failing. It’s a messed up system.
    But then I figure it probably doesn’t mashed because so many I know have gotten ieps that are useless.
    But overall I just think if teachers were just allowed to teach so many problems would be better, not all but many. If they were given the resources to do what they are trained to do they could teach in a way that reaches many more kids than the new, teach the test attitude does.

  • Christina


    It’s criminal that we have to go through so much effort to get our kids the appropriate education they’re supposed to have. I’m SO happy to hear he’ll be getting the eval tomorrow and hope it goes smoothly and quickly.

    I don’t think any of us totally knows what we’re doing in trying to advocate for our kids, because the rules keep changing. I thought I was doing pretty good until I got the psych eval back for my daughter last week and, along with it, the sickening feeling that I haven’t been doing enough for her. It was a wake-up call to do better, because no one else will be there to advocate for her more than me (and my husband, too).

    I have no doubt you’ll be a force to be reckoned with in using your voice. You’ve already fine-tuned it with the fires you’ve passed through so far.

    Good luck tomorrow!

  • Michelle Mossey


    Good for you, mama! You must be your child’s own best advocate. I think people in education care about the kids but are so overworked to be able to give each one the attention they deserve. Good for you for keeping at it until your child gets what they need!
    I think what is important here is that you tried to do what’s best for your child. I am not sure if there is a “right” way. (Plus who wants to go with the flow anyway?!) :)

  • Shannon


    If I were stepping into the ring, I would so want you in my corner.
    I wish everyone had such a fierce mama advocate.

  • Jenny from Mommin' It Up


    Awesome, awesome, awesome. So thankful our state has a great resource like the Autism Scholarship. Not thankful for what you have to do to get it. As you stated, there are many parents out there who aren’t as capable of keeping on as you are. Thank you for fighting for their kids too!
    With my Sophie I had to do lots of things and complicated processes to get her what she needed…also as you stated, had I not had help from those who had gone before me, I wouldn’t have made it. Where would we all be? Thanks for being there in turn for the person who will soon be you…hopefully her path will be a little less bumpy.
    And YAY for Adam. Did he hit the jackpot in the parent department or what??

  • Chris


    I’m sorry for all the trouble you and others have had to go through to get results. I think it’s awesome that you have decided to help others find the help they are looking for too. There’s power in numbers and that’s hopefully how you are going to get the change you need.

  • Brook


    I actually understood everything you said, because our family had the same issues. Although my son is only six he suffers from perceived ADHD, ODD and behavioral disorder {possibly manic depressive or bipolar} No one really knows because he’s so young. Finding answers and getting the appropriate medical team on board, etc. Took the ENTIRE kindergarten school year. It put him behind in school and made what should have been a fun time for us all … HORRIBLE. I was lucky because I have a friend who is a special education teacher and she told me everything I needed to know. Unfortunately in the world we live in teachers can’t walk up and say “your son/daughter has ADHD or {fill in the blank}” because school policy won’t let them. IT’S UP TO PARENTS TO BE PROACTIVE. If you think something is wrong, talk to you pediatrician or you can ASK the teacher or school social worker. It’s hard, and I missed ALOT of work, and cried many tears of frustration, but like you I’ll do whatever it takes to get my child what he needs. We now have an IEP in place that will follow him his entire school career, so if he needs assistance he can get it. Our biggest problems are school breaks and after school care, because he has some issues, but not enough to get him a para he wasn’t allow to attend the summer camps for fear something would happen. Total bummer…and in our efforts to find a summer nanny we had to disclose his diagnosis. In the system he’s what I call a “gap kid”. Kids that have too many behavioral issues to be in normal activities, but not enough to qualify for care assistance. It’s a vicious cycle, and my husband and I are his voice and we will shout as loud as we can so he doesn’t fall through the cracks. Thanks for sharing your story and I want you to know I’m right there with you yelling and holding your hand of course.

  • Liz


    You are an awesome mom; using your voice to help others, well, you are also an incredible human being, my friend!

  • Toni


    I love you, and am so proud to know you, your family and ecspecially your kids. You give me faith for what’s right in the world! XO

  • unmitigated me


    I definitely recommend Jack’s Place for Autism websitw. A local sports personality (Jim Price, broadcaster and 68 Tiger) and his wife set up this amazing site and its programs after running into the same frustrations with their son, and getting the help and resources he needed. They work absolutely tirelessly raising awareness, which is still necessary, even now.

  • unmitigated me


    Here ya go:

    http://www.jacksplaceforautism.com

  • tara


    Oh wow that would be SO frustrating! I’m so glad you finally will get the evaluation, but you’re right, there must be tons of other kids falling through the cracks. I just don’t understand how a society as far along technology wise as ours can be so horrible at taking care of each other. I think it’s because we’re used to sweeping things under the rug and now we just have to work REALLY hard to not let that happen.

    Good for you, though. I love that you are going to pay it forward!

  • Mama D


    So many kids must fall through the cracks. We have a kid with a clear medical need, and we had a terrible time getting him help. My husband is a lawyer and I worked for lawyers for ten years, so we can read legalese with the best of them–we had to quote their own handbook to them to get anywhere. Any kid without educated and proactive parents is going to have a tough time in this system!!

  • Tracy @ The UnCoordinated Mommy


    I used to work in fundraising for a non-profit. By accident a woman from a local mission left a voicemail on my office phone saying that a little boy and his grandmother needed to find housing by Friday or they would be on the street. Turns out the little boy was autistic and his grandmother, for whatever reason was being disruptive so they needed alternate housing. If they became homeless then DCF would take the little boy and put him in foster care, which was NOT the best scenario. There was an orphanage that specializes in kids with special needs, but they were waiting for space to free up. It was imperative that the little boy stay with his grandmother until then. By the grace of god that message ended up on my voice mail and I took that as a sign that it was my job (assigned by god) to keep that little boy from falling thru the cracks (through two more housing transfers) but how many more are missed???

  • Suzanne Perryman


    You go girl. I had the same revelation recently, almost EXACTLY. I have been rolling along, doing the right thing all these years, staying smart, involved, hands on , collaborating and then BOOM. We ran into a challenge that was huge, and then were treated so unfairly, that our local advocating agency told us to hire an ATTORNEY and file a FEDERAL SUIT. The attorney fought, they said no, repeat, repeat. This is the summer I felt like slime ( ahem except for BLogHer. Final hour, pre-suit- THEY DID THE RIGHT thing. I decided I need to advocate also- on specific topics especially. I haven’t written about yet, trying to figure out the best place to tell the story.. I wish you luck, good thoughts- and at the end of the day let your son inspire you to move forward and roar louder! blessings-

  • Stormy


    I am so sorry this process has been so tricky to travel. As I was reading, I had the same thoughts about the kids who had no one to advocate for them and the parents who got lost trying to help. I wish they made blog applause clips so you could be applauded by your readers constantly as you work to make the world a better place both for your family, other people’s families, and everyone at BlogHer. You just totally rock and define hard work and supportive!

  • Martina


    As a new high school teacher, I do my best to keep up on all IEP information on my students. This semester I have seven, all with slightly different needs. These are the students I enjoy teaching the most. It is frustrating to hear your story. The process should not have to be so much trouble or so time consuming. I am keeping my fingers crossed for you and your son that the next school is the perfect match.

  • AlisonH


    Thank you for your voice. It is so needed. My niece would thank you too–my brother/her dad has fought some of those fights.

    She is now an adult holding down a summer job, going to college, and doing okay. Hang in there.

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