The Truth about Special Needs Parenting

There are no medals given out to special needs moms. It’s not like you do all this and at the end you get an award. There are very few breaks. Very few kudos. And in my world even fewer thank you’s. For some moms there are no hugs. Or kisses. But you do it. You keep fighting. It’s a mixture of hope and desperation.

And not a day goes by when you don’t wonder…‘Am I doing the right things for my child?’

And here is the truth.

I didn’t get a crash course in raising a special needs kid. I wasn’t told in birthing class that I was going to need to be stronger than I ever thought possible. Or that every day was going to be a struggle. And I certainty didn’t get extra help when he was a baby. No one held my hand. No one trained me on what to say or do.  I wasn’t told how it was going to feel or how to handle those feelings. There was no preparation.

One day I was pregnant and then next I had Cooper. And almost immediately I knew something was different. But I had no one to tell. It was a journey I had to take on  my own.

I’m not stronger than you. People will say continuously….‘you are so strong. I could never do what you do.’ I always laugh at that. What choice do I have. I can’t hide from autism. It’s too strong. Too noticeable. Too demanding. I don’t have more patience than you. I’m not a better person. I’m not a better mom. I’m just a normal person.

Half the time I am just surviving. Waiting to crack.

There are no awards given out to special needs moms. No one cares if I take Cooper to 10 therapy sessions as opposed to two. No one is keeping track of the best moms. And no one is telling me what to do. I had to figure it out on my own. Just like every other mom. Except…the stakes are different. The game isn’t quite fair. The results are skewed.

All I can do is be honest.

And I think that sometimes it comes across that I am mad or negative. I had someone tell me a while ago that the things I say about Cooper are shocking.

But no one prepared me for the head hitting. Or the constant whining. Or for a kid that simply doesn’t talk.

And the CONSTANT ups and downs.

I think we are doing better. Fraser is helping. Cooper is making more sounds and interacting more. Summer is here. I truly feel like there is hope.

And then I get his OT evaluation in the mail.

Lack of normal physiological development. What the eff does that mean? Severe delays in fine motor, gross motor, visual motor, self-care and regulation of arousal. And it mentioned severe self injurious behavior.

What the F.

As I read this my heart dropped. I felt the weight creep back onto my shoulders. Suddenly my outlook changed. And the negativity resurfaced. He’s never going to be able to talk. He’s never going to be able to dress himself. Or function as an adult. And I am going to be alone with this kid for the rest of my life. And he is going to get teased. And bullied.

And I am going to need to carry the weight of this until I die. And then who is going to take care of him.

Then the really awful thoughts flashed through my head. The dark ones that you aren’t supposed to say out loud. But again, remember, I didn’t ask for this. I didn’t sign up to be a special needs mom. And I am human. And even more so, I am human who feels things very deeply and passionately. I can’t shut it off. I love big and I hurt big. It’s a blessing and a curse.

As I read this Sawyer was sitting next to me asking if we could go to the pool. And by asking, he was yelling, ‘POOL MOM!” over and over gain.  And I shouted at him…’Sawyer, mommy is trying to read this. Be quiet.’

And he started to whimper. He’s wearing his life jacket. Which of course gives me a huge grin. He starts smiling and laughing and telling me how he wants to splash me. He grabs my face and kisses me and tries to sweet talk me into taking him.

I am a monster. I shush this baby who wants to spend time with me so I can focus on the kid who doesn’t need to spend time with me.

And the thoughts are back.

It shouldn’t be like this. It shouldn’t be so hard. What if I just had Sawyer? And there is that thought. The one I shouldn’t think.

My heart is broken. I just heard his therapist call it ambiguous grief. She told me that it’s the hardest kind of grief because it constantly resurfaces. Just when you think you are fine another missed milestone will become evident. Or another evaluation will come in the mail. And you are plunged back into the hurt.

Grief is not linear my friends. It comes in waves.

I wanted to share this post from The Mighty…Please Don’t Tell Me Autism Is A Gift.