A Disability Diagnosis Is Just the Beginning

“Do you think there’s something wrong with your child?” are words every parent dreads to hear. When another parent asked me this for the first time, my heart sank.  Yet, deep inside, I knew she was right. He played inside when the others went out. He said one or two words, and the other kids were starting to string along sentences. What was I supposed to do? 

The only thing that came to mind was to go over, pick up my three-year-old, head to the car and cry the whole way home, which I did.  

The next day I contacted my doctor. She referred me to a developmental pediatrician. Two months later, after a lot of testing, we sat in his office and heard the word autism. I don’t remember any of the other words the doctor said. It was just one big blur. Thankfully they provided a written report. 

Now, what are we supposed to do? Speech therapy was recommended. A special school? Where and how do I find these things? My sister-in-law told me to ask the local elementary school for help. I called them and was told I needed to come in and sign some paperwork to get my son evaluated.  

More evaluations? Why? I already had a stack of evaluations in my hand, yet we needed another evaluation by the school. And so, it began again. They completed the evaluation. They told me to meet them at the school to review the report and develop an Individualized Education Program (IEP). What is an IEP?

I showed up at the school on the correct date and time. There were eight people sitting around the table. To this day, I’m not exactly sure who they were. We went through the motions of reviewing the evaluation and developing the IEP.  

At the end of the IEP meeting, I left knowing that on Monday, a bus would come to the house and pick up my son. He was going to go to school from 8 am to 3 pm. I needed to send lunch with him. I left the meeting with yet another stack of paper.  

If you are reading this and you have been through a similar experience. Keep going. You can freeze or you can take action. I chose the latter. It has made all the difference in my son’s life. Here are my recommendations on what to do next:

• Learn about the disability diagnosis and how it impacts your child. 
• Learn about the special education process. 
• Participate in training events. 
• Learn about resources in your community. 
• Join a support group – virtual or in-person. You can find some through this website!
• Don’t isolate yourself. 
• Speak up for your child’s needs.  

You are strong. You can do this. Your child’s future depends on it. 

Here is a great place to get you started.