“To the parents of the newly diagnosed child,
Breathe. I know that sounds like a simple, everyday thing, but in the moments leading up to, and while getting the diagnosis, I felt like I was holding my breath to the point of passing out.
Once I actually received the diagnosis, it felt like I had the wind knocked out of me, even though I already knew in the deep depths of my soul that my child was autistic.
As you go through the various steps of assessments and evaluations for therapy and school supports, when the team is ready to put together a plan, always remember that you are part of the team!
In fact, you are the most important part of the team because nobody knows your child better than you do. You are their voice as all of these people talk about how to best serve your child’s needs. Be open to listening to everyone’s thoughts, but always trust your gut and don’t let them silence you because you are ‘only’ the parent.
I was told in the beginning that my child needed 35–40 hrs of Applied Behavior Analysis (ABA) therapy. Let me be very clear, that schedule does and has worked for many families. However, it did not work for our child.
In fact, she was completely stressed out and anxious. She was 3.5 years old, trying to do almost 40 hours of ABA a week, preschool a few hours a day, as well as home speech and OT therapy.
She was exhausted, and she needed time to be a child. She needed to rest. She needed time with me as her mom, not as her therapist making her work for every Goldfish cracker she wanted to eat or Play-Doh she wanted to squish.
I sat the team down and said we were cutting those hours in half. They definitely didn’t agree at first, but I held strong, and they came around to my way of thinking. It was the best thing I could have done for her.
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Again, that was our situation and what worked best for US. Don’t be afraid to sit at the table as an equal member of the team at those meetings.
At the end of your IEP meeting with school, you do not have to sign that paper. You can take it home and look it over and process all of that information they just gave you because it is a lot to take in!
When you are in the hardest moments of communication barriers, aggression, sleep deprivation, regression, or whatever your hard moments are… please try and remember to breathe.
Find a safe place to talk or vent out your feelings, or to ask questions. Find your people and hold on tight. They have been there and they will have your back.
Please allow yourself some grace as you learn and try to navigate every part of your journey. It’s okay to feel all the feelings and go into the dark sometimes. Just remember to step back into the light as soon as you are able. Because even though the task seems insurmountable some days, you can do it. You will do it.
You will find strength you never dreamed you had. You will learn to celebrate all the small things, because with our kids no moment of progress is ever minuscule. It is always a HUGE WIN!
You will find beauty in places you never knew existed, and that is because your child is always teaching you to slow down and appreciate the moment you are in with them.
Take their hand and let them guide you through their journey. It’s not an easy path, but it truly is extraordinary.”
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Read more about autism and special needs parenting:
It Took 16 Years For My Son To Get His Autism Diagnosis
Special Needs Parenting Is More Than Just Difficulties—It’s Full Of Beauty
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