What I’ve Learned

Dear Special Needs Parent,

In the last few years I’ve learned a few things being a momma to 2 special needs boys.

I look back into my early twenties and see a care free girl who was in college and had a different perspective on life.

Bringing a child into the world automatically changes your perspective because you have someone else you have to take care of. But getting the diagnosis, whatever it may be, changes our hearts.

When my first son was diagnosed, I was confused and saddened but I picked up the pieces very quickly and pushed myself to get him everything he needed to succeed.

The unknown of a feeding tube is indescribable. The day his was placed, I was naive. I pictured him to start taking bottles soon and move past this. Here we are almost 3 years later and my boy still uses his feeding tube for all of his nutrition.

I wasn’t being realistic. I was holding onto something that I dreamed to be true but it wasn’t. He then went on to be diagnosed with Cerebral Palsy and he still doesn’t talk. It’s life changing for me.

His twin brother was then diagnosed with severe nonverbal autism. That broke me. It still does. He has no understanding of language and he can’t communicate at all, even finger pointing.

For a long, long time I wasn’t being realistic about the future. And then my son was diagnosed with Autism and time has gone by and he still doesn’t speak either.

I would say to myself, he will talk. Who doesn’t talk? I’ve never met a person who doesn’t actually talk. But reality is, he may never speak.

The biggest thing I’ve learned is whatever you pictured your child to be in the future is your picture. It’s your dream. Not theirs. Learning to accept what may not be is hard. It’s a gut punch most days. If you can’t accept it, there’s therapy. Your child needs it right? Why not you? Why not your family?

Therapy has saved me and taught me so much about me. My new perspective on life. It’s given me a reason to appreciate that my boys have taught me patience. They’ve taught me a love I’ve never experienced. They brought me closer to Jesus in my own path.

So, give yourself some grace as a special needs parent. Learn to accept the unknown, and when you can’t, get help. We all need support and a group to help us whether it’s from family or a group of special needs parents you met in a Facebook group.

So what happened to that carefree girl in her twenties? Who am I now? Well, I’m a more patient, compassionate person who fights for her kids and they gave that to me.

I will always be grateful that God blessed me to be a mom of 3 beautiful children. Life just looks a little bit different, not less, just different.

My question to you as a special needs parent is, how has your perspective changed and have you found your group who supports you?

It’s life changing when it happens.

Published by kasmith0827

I’m a stay at home mom to 3 children. A 4 year old girl and twin boys who are 3. Both of the twins are disabled. One has Cerebral Palsy, a feeding tube, speech apraxia and airway disorders. The other twin has severe nonverbal autism.

One thought on “What I’ve Learned

  1. Hello. Your blog really touched me. You’re right…some days it just feels like a gut punch. It hurts bad! My son is autistic and has been non-verbal since almost 3 years old. I’m still hoping and praying for the best ….I appreciate you sharing your personal story!

    Like

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