Advocate for Your Child With Special Needs: If You Don't, No One Will
Procedure Done, Ears Fixed, Story Over.
When my son Joseph turned two, we noticed a change in his language. Words he used to be able to say began to come out as gibberish. Say his name from behind, and he didn’t even flinch.
Naturally, we were concerned and called our pediatrician. It turned out Joseph had moderate hearing loss in both ears due to fluid buildup. The doctor recommended inserting tubes in his ears to fix the problem.
Procedure done, ears fixed, story over.
Not so fast.
If only it could have been that easy. Actually, this is where the story began.
My Gut Told Me Something Wasn’t Quite Right
As a result of Joseph’s hearing loss, he qualified for Early Intervention services, including a regular speech therapy session at our home as well as a weekly developmental group.
During these developmental groups, I noticed that my sweet boy didn't play the way the other children did. He kept to himself, refused to sit during circle time, and had outbursts and tantrums more often than the other children. He used his body when he was mad or frustrated, instead of his voice.
I was worried; my gut told me something wasn’t quite right. When I finally got the courage to ask family members, friends, and my doctor about it, often the answer was something along the lines of . . .
- "That’s a boy for you. They are always late bloomers."
- "He’ll outgrow it and be just fine."
- "He’s too young to be worrying about it yet, let’s just wait and see."
- "He’s just a boy’s boy."
Meetings and Appointments and Diagnosis, Oh My!
In the years since, we have attended developmental learning groups, occupational therapy, physical therapy, and more speech therapy, attended IEP meetings, worried constantly, and waited over a year for a psychological evaluation and, finally, a diagnosis (namely, ADHD, Social Pragmatic Communication Disorder, Developmental Coordination Disorder).
It has been hard, but I would change nothing. Why? Because my son is starting kindergarten in two weeks and will have every possible accommodation, all the help he could ever need.
Around this time, I started my graduate studies in early childhood development. It was here I found a group of educators and fellow mothers who would teach me not only the importance of following my instincts, but what questions to ask, who to ask them to, and what my rights were in terms of the education system.
Early Intervention Yields Huge Benefits.
There are many reasons why he is going to have so much support as he begins school.
First, we are lucky enough to live in a wonderful district that has a real appreciation for the importance of front-loading support for students in the early years, knowing that many of these students will need fewer services as they grow.
As a teacher, I know firsthand that this focus on early intervention is not always the case. I work in a private school but attend my share of IEP meetings in public schools throughout metro-Boston. Often, these meetings do not go the way I believe they should and (in my opinion) excuses abound.
I get it, services are limited, and public schools are on a tight budget. But the line between what qualifies for special education services and what does not can be thread thin, and many districts err on the side of wait-and-see.
Parents hear things like . . .
- "Your child is not more than a full year behind in reading, so they are still 'technically' within grade level."
- "Six is still too early to know if a child is dyslexic."
- "Your child’s attention issue is something you should really talk to your doctor about, but since there is no diagnosis, there is nothing we can do right now."
This was never the case in our town.
We still had to fight like hell.
Even with all of the support our school district provided, we still had to fight and question and push.
Being an Advocate
You see, Joseph would not have ever had an IEP, or special education services, or access to therapy, had we not asked the next question, requested every evaluation they would give, or built relationships with people who could help us.
And he would not have made the amazing progress that he has made had we not followed through by driving him to every appointment, attending (so many) meetings, or researching his symptoms.
My “Joseph binder” could fill its own filing cabinet—and that is mostly because we were the annoying parents that never stopped pushing.
Here is the thing that it took me going to graduate school to fully realize: You have to be an advocate for your child.
No one is ever going to know your kid like you.
You have to trust your gut. If something seems off, look into it, the earlier the better.
Treated Before a Diagnosis
When I met with the developmental pediatrician at Boston Children’s Hospital about my son’s psychological evaluation, she said, "It is as if Joseph came to us already being treated for his diagnosis." I was overcome with relief and emotion. There were so many days that I felt that I was overreacting, putting my son through too many tests, dragging him to too many appointments. But, no. My gut was right.
I often think about where my little man would be if he had not had all of this support over the years. It is a chicken and egg scenario, right?
- Where might Joseph be if he hadn’t started Early Intervention when his hearing issues began four years ago?
- What if he had never begun occupational therapy or speech therapy, or received special ed services?
- Would his diagnosis be different?
I believe it would, and I believe he would have much larger learning gaps to bridge entering school this year had he not received the support.
Know Your Rights; Ignore Your Fears
So please do not be afraid to get extra help for your child. I know that as late as the '80s and '90s, when I was growing up, there was still a stigma about special education. That has changed so much thanks to the Individuals with Disabilities in Education Act (IDEA), advancing knowledge of childhood development, and a growing understanding among educators that inclusive classrooms benefit all students (for a great summary of the benefits of inclusive classrooms, check out this article).
Today, children with special needs are offered the same opportunities as students in the general education classroom. And, in my opinion, they are getting even more. I know firsthand how much money it costs for private therapy with speech pathologists, physical therapists, reading tutors, and occupational therapists.
What to Do If You Think Your Child Is Struggling
If you think your child is struggling academically, socially, or developmentally follow your instincts and ask your pediatrician about it, request an evaluation from your school, do research and know your rights (learn about IDEA and your rights here and here).
Find a Support System
Finally, caregivers of children with special needs need support, too. Talk to your doctor and ask about services available for you and your family, coordinate with local parent groups—many towns have Special Ed Parent Advisory Councils or similar parent groups that are a wonderful resource for ideas, answers to questions, and help from others who have been through the system and know the ropes, or reach out and ask for help from family, friends, teachers, anyone who you can lean on.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.