According to the CDC’s latest report, 1 in 68 children have a diagnosis that places them on the Autism spectrum; a number that is approximately 30% higher than the previous reports from 2012.
Yes, that’s right, 30%!
And just in case you’re a first time reader and don’t yet know, my child would be one of the 1 in 68.
Parenting a child with special needs is not an easy task but then again, parenting in general never is. But, to kick off April and the beginning of National Autism Awareness Month, I thought I would share with you a few of the things that I have learned as the parent of a special needs child.
1. Doctors do NOT know it all.
Yes, they have the formal education, the credentials, and the framed diploma on the wall, but that doesn’t mean that they know everything. They’re human just like you and I and do make mistakes of their own. They may occasionally try to downplay your concerns or suggest things that you feel are unnecessary however, you know your child better than anyone. Follow your gut instinct and if they won’t listen to you, find one that will.
We sure went through our fair share of doctors before finally finding one that truly listens to any and all concerns that we have. Being acknowledged and heard by your child’s doctor is not a privilege that you should have to work for.
2. The paperwork. It is never-ending.
Between the evaluations, the requests for services, and the insurance forms, I have written on more paper in the last year than I did throughout my entire high school career! The kicker? The majority of it won’t ever be seen by human eyes. It will get tucked neatly away in a file folder that sports our last name because “officially” we have to have it on file.
3. You become a master researcher.
Personally, I like to think that my senior English teacher would be exceptionally proud right now. After all, she spent months drilling into my brain the proper way to research a topic and build my knowledge on a subject. Now? Google and I are the best of friends (besties if you will), the library has become my home away from home and tips, techniques, and new study findings fill my brain on a daily basis.
4. You will no longer care what people think of you.
Whether you were once incredibly outgoing or ridiculously shy will no longer matter. Your own feelings and reservations will take the proverbial back seat.
Nicholas spends a good portion of his time in his own little world and to reach him, I have to sometimes venture into that world to pull him out. Sometimes that means that while sitting in the shopping cart, he is hopping in his seat because he loves frogs and frogs hop. To get through, I too have to hop. Do people stare? Absolutely! Do they laugh? Sometimes. Most of the time I simply ignore it but sometimes I just can’t help but smile and wave 🙂 Just giving them a quick little “hope you enjoyed the show now please move along.”
What may have embarrassed me before, now doesn’t bother me at all because that hopping? It brought him back. Now he’s happy, laughing and interacting with me and that’s all that matters.
5. You will become assertive.
A lot like my last point but still worth mentioning. Were you once a people pleaser that sometimes allowed others a bit too much wiggle room in your life? Well, not anymore! Having a child with special needs doesn’t just magically increase the strength of your backbone but it does speed up the process. You become the assertive, sometimes referred to as “pushy,” parent because you have to.
My child cannot stick up for himself. He cannot argue with the doctors when something is not working. That job falls on me and believe me, the pushover label falls off with lightening speed when it comes to your child.
6. The little milestones will mean the world to you.
While every situation is different, a lot of times when a child is diagnosed with special needs, you begin hearing about all of the things they can’t or won’t do. When the stars align just right and your child proves them all wrong by mastering one of the aforementioned skills, you’re filled with a sense of pride and gratitude so great, nothing could shake it and you spend days, weeks floating on cloud nine. Simple things like walking and talking that so many take for granted make you happier than you ever imagined you could be.
7. No, can’t and won’t are just words.
They have no weight unless you give them that power. As long as you believe that your child can’t do something, they won’t. If you believe they can’t have a normal life, they probably won’t. Now, there are some exceptions to this so take it loosely but if you want your child to work for something, to accomplish some goal, you have to believe that they can. Why? Because when you believe it, they believe it.
8. Judgement belongs in the courtroom.
The old saying “never judge a book by its cover” has never held more truth for me. The worth of a person should not be based on what they can or cannot do but rather who they are. Unfortunately, this is not always the case. Nicholas, physically, looks like every other typical child his age so people tend to assume that he should act like one. When he doesn’t, many automatically assume that there is something “wrong” with him or that he is the product of poor parenting. I’ve come to terms with the fact that I can’t change the opinion of every single person we meet but I have learned to never judge a situation from the outside looking in.
9. The future I had “planned,” means nothing.
But that doesn’t mean that it can’t still be great! So the life I had pictured all throughout pregnancy no longer exists, that’s okay. I’ve mourned that loss and have moved on. There are many, more important things today that require my time and attention like making memories with a little boy that is obsessed with trains and watching him slowly acclimate to being a big brother. My future and that of my family may have felt like it was derailing a bit last year but we’re now back on track and on to bigger and better things.
10. Most importantly, he is the master, I am the grasshopper.
I may be the parent, the teacher in our homeschooling world, but Nicholas has taught me more about life and love than I could ever hope to teach him.
He loves unconditionally, and while he is not always able to verbally express it, when you least expect it, he gives you a chance to see just how much when he allows you into his world and brightens up yours. He fights for what he wants with every fiber of his being yet would never hurt a fly. His laugh is contagious and he’ll gladly share it with you.
He shows me each and every day through his innocent eyes, the beauty that can be found in this world and the compassion that he is capable of. As the parent of a child with special needs, I have learned that it is my job to make sure that he never loses that.