The parent’s role in the IEP is absolutely crucial. There are many disciplines that can be represented, but your child and you are at the center. There are numerous emotions that go into having a child with disabilities or sensory challenges. Are my feelings valid? This post isn’t about explaining the who’s who at your IEP meeting. It is about supporting you and your child as the #1 team members – and how you feel about that!
If you know me, you know my experiences in the field of developmental disabilities are varied. While I have loved all of my experiences, they have all been quite different, and I have learned something unique about people and myself in each one.
In no order:
- I’ve helped in a self-contained classroom for children with moderate intellectual disabilities. I miss those cuties!
- For many years, I worked one on one in people’s homes helping with life skills. I grew some wonderful lifelong relationships with those families.
- I worked with children with emotional disorders for a very short while as it was too much stress for me.
- I have been a QIDP – fancy for Case Manager for people with profound ID through mild ID.
Personally, I have two experiences.
- I grew up with my older brother who has autism. It was a unique way to grow up. My relationship with my brother is unique as well.
- The wonderful child without whom this blog would not exist – my son, E!
Are My Feelings Valid?
I sometimes feel like a fraud because my son’s delays are “minor” and though he is getting services for it, his SPD is undiagnosed. It is a hard feeling to explain and I truly feel unjustified when I say my son has struggles. How dare I feel all these struggles when so many children and families are dealing with “more”? Heck, my brother is a prime example. How dare I act as if I am starting to understand just a bit of what my mother went through, when my child with help through Early Intervention started speaking relatively “typically” around 2 and a half and does not need medication? Moreover, my child can walk, express himself better every day, and socialize.
But we do struggle. E isn’t neurotypical. My feelings are valid. So are yours. No matter what you are going through, please know your feelings are valid. Try not to compare (she said hypocritically).
I can only speak from experience. But I will tell you – my mind opened when I had my child. I thought I knew about disabilities. As a case manager or caretaker, I knew some stuff. I knew the psychology of autism. I knew that there were struggles parents faced. I genuinely loved who I took care of. But I just didn’t GET IT like I do now.
The Team
I have conducted IPPs (like an IEP at a residential facility). I have followed through on goals from IEPs. And now I have been the parent/guardian at the table. All members are vital parts of the team. Everyone comes with their own knowledge and experiences. The therapists knows your child’s physical strengths and limitations on a medical level and work on that. The teacher knows your child socially and academically.
You know your child’s heart.
Your child is learning to know himself.
In Facebook groups (take them with a pound of salt), I have heard so many parents complain about their IEP team. This person is clueless. This person doesn’t know my child. This teacher doesn’t follow the IEP. I am pulling my child out to homeschool.
Again – these feelings are valid. But they are so heartbreaking! We have dealt with our own issues in the school system. My son did not qualify for occupational therapy at his school when he transitioned from Early Intervention to PreK. He qualified for just PT and Speech with enough of a delay to get special education services. I have communicated my sensory concerns with the school and sent his private OT progress reports. We are now at the point where he has progressed so much that they want to re-evaluate him early, potentially causing a loss in services. (Here is my post about that issue!)
My Hopes For You
I think being 100% satisfied is a rarity. You just want the best for your child – even understanding that resources are not always readily available.
I don’t have the answers. It is imperative that you voice your concerns as rationally as possible. Read your procedural safeguards. Find an advocate to help you through the process if you feel that something is wrong.
I sincerely hope that you feel respected as a central part of your child’s team. I hope that your child’s school understands works to help your child to the best of their ability. Lastly, I hope that if something is wrong, you will empowered to get your child’s needs met.
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