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What I Wish I’d Said During My Child’s IEP Meeting

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To my child’s IEP team:

First of all, let me start off by saying how thankful we are that you have devoted your life to working with medically complex children. It makes it easier on parents to know you look out for our children while they are at school. We know you have taken on a big responsibility as we know the demands our children place on us.

Forgive us if we get frustrated during the meeting and don’t agree with what was being said. Please understand we have put way too much time and energy into exhausting every last option of getting him the help he needs. Last I checked, he was our child, and we will not stop advocating for him. I’m sorry if that comes off as ungrateful for all you do. Please do not misinterpret this. We just wish you could step back and walk a day in our shoes.

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These are the things I wish I would have said in the individualized education program (IEP) meeting.

Our son was born preterm and spent three days in the NICU due to breathing problems. He fought the odds. My son is a fighter. He was not a happy infant and toddler. He demanded a lot of attention right from the beginning. At about 6 months of age, I knew there was something wrong with my child.

The problem was nobody would listen to us. It took another six months for a doctor even to take our concerns seriously. It then took another two years before we got a proper diagnosis. We have had to fight for where we are. Constantly battling with professionals is exhausting. We have been misdiagnosed so many times. Try to imagine walking through life with every medical professional telling you they don’t know what is going on and that he is a puzzle. This leaves you feeling helpless as you struggle to watch your child suffer.

Before medication, he was having close to a 100 absence seizures a day. This, too, was misdiagnosed as facial tics. He wasn’t medicated for another year because we were led to believe they were tics and there was nothing that could be done about it. All of this was on top of a global developmental delay. So forgive us if we disagree with what is being said. We have been let down so many times on our journey that it has become hard to trust.

We deal with sleepless nights, meltdowns that last for more than 20 minutes and endless medical appointments. We are living with guilt because we feel like we’re not always able to give our other children the attention we would like. We are exhausted. This is our life. We have hit rock bottom numerous time but continue to fight.

It took us five years to find the right medical team and finally get some answers. Medication helps, but he deals with so much every day. The seizures are not the only thing. He has a mild intellectual disability and requires occupational therapy for sensory issues, speech therapy for a delay and a psychologist for his impulse control problem. These past weeks we were told he has a genetic mutation. So we are in the process of trying to learn what all of this means. Please bear with us.

You say he is too reliant on adults for help and should be more independent. He should just be able to follow directions and pay attention. Now, if you can honestly tell me that you could handle everything he deals with on a daily basis without needing adult support to help you navigate through your day, then more power to you. He needs validation and support. Why is that so bad?

We have seen our son overcome so many milestones this year to promote being independent.

He has learned to get dressed without putting clothes on backwards.

He has learned to button and zip with a lot of help from occupational therapy.

He has learned to make some snacks by himself.

He has been able to play outside by himself while we work around the yard.

He is beginning to understand how to “play.”

He has been able to learn how to hold his pencil properly and trace his name.

He has started helping out with some jobs around the house.

The biggest accomplishment he made was being able to pedal a bike with training wheels.

Here’s the thing: This might not be the type of independence you are talking about, but last I checked, the IEP is supposed to be individualized for him. I know education is important, but we need to be realistic. He is not ready for the kindergarten curriculum yet. He needs to get his self-help skills down so one day he can hopefully become self-sufficient. The reality is he may never be able to live on his own. We have come to terms with that.

Please do not act like you know our child better than we do, and please be understanding when we say we want to set him up for success. He has enough battles in his life. School shouldn’t be one of them.

Thanks for hearing us out.

Image via contributor

Originally published: December 17, 2015
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