So You Got the Autism Diagnosis… Now What?

So You Got the Autism Diagnosis…Now What?

After Raelyn was diagnosed with autism, my husband and I initially felt a sense of relief. It was as if our worries had been validated and it gave us a concrete subject that we could research. This sense of relief soon faded, as I became more and more aware of how much this was going to change our lives. Forever.

When people are going through something they have no control over, they find a way to deal with that feeling of helplessness. The way I deal with things is by first learning everything I can about it. The more I know about what I’m dealing with, the more I can do to work towards a goal. So I bought tons of books, joined autism support groups, and did my own research online. Once I realized how much therapy Raelyn was going to require, I decided I needed to get myself organized.

“This was going to change our lives forever…”

I bought a 2 inch binder, dividers, cute post it notes and labels, and of course pretty sharpies for labeling ? I put all of my energy into getting this binder set up perfectly, with tabs for different doctors, tests, therapies, services, bills, etc. I’m dead serious when I say that this thing was a work of art. 

See, I didn’t realize it at the time, but putting together this binder provided me with a sense of control in the matter. That binder was my visual “finish line.” I knew in my head that there was a definitive start and end to that project, and once I completed it, I could move on to the next task to help my daughter.

I know. It seems ridiculous. How does a 2 inch binder seriously help someone cope? Well for one thing, it cost me less than $10 total, which is a hell of a lot cheaper than therapy ? But in all seriousness, I truly think that the hardest part for parents with a special needs child is feeling like they initially have no control in the matter. I have since discovered this isn’t the case at all.

It didn’t take me long to decide that the majority of my time, energy, and patience would go into doing everything I can to ensure my baby girl is able to live up to her fullest potential. I made that decision. ME. You see, I DO have control in the matter. I did all along. Of course, I have no control over the fact that my daughter has autism, but I DO have control over how I’m going to handle it.

Chances are, you’re reading this because you have been or are currently navigating your way through some life changing news regarding your child. Here’s my advice (not that you asked for it, but here ya go… Freebie!): allow yourself to grieve and process the news. I explained in my previous post that I gave myself a week long grieving period. That was it. And then it was time to DO something about it. Find a way to make yourself feel like you are in control of some aspect of this new life you’re about to endure. Set goals for yourself regarding your plan for what needs to be done in order to get your child the care she needs. Tell yourself, “ok I will give myself a month to get her therapies set up, I have until the end of the summer to find a pre-school program that fits the needs of my child, etc.”

This new world that you’ve become a part of can be overwhelming. It can also be painfully lonely. It certainly isn’t for the weak minded people of the world. You will feel flooded with information and a million new questions all at once. So try to break things down into tasks and approach this as if it is now your full time job, complete with project deadlines (oh but without the pay. Or breaks. Or vacation days?).

“Moms won’t often say so, but parenting a special needs child can be very lonely”

You are going to get overwhelmed. That’s ok. Just know when it is time to step away for a minute and let someone help you. You will get through this, but don’t try to do it all in a week. Cut yourself some slack, do the best you can, and remember that even though you are now your child’s therapist, nurse, social worker, and advocate, don’t forget to be their parent FIRST.