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.

11297843_1089018051108654_1109680374_n

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.

FullSizeRenderAs 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.

 

Advertisements

5 thoughts on “The Truth about Special Needs Parenting

  1. I’m so sorry, Mama. I sometimes wish we could all live in a commune so we could share the weight. As I was reading your post, I was sitting quietly on the couch with Davis watching Cars while I thought Banks was in the playroom… Until he came to me with the Clorox bottle and a bleached shirt. He has sprayed down the kitchen, all because my husband left the lock off of the cabinet. It’s a mess, and a daily occurrence. Sigh. Though further evaluations did not give a diagnosis of autism for them, they have developmental delays, some of the severe. They sited speech (as they’re non-verbal) and impulsivity. They recommended more speech and occupational therapies. So, the fight continues. More days of being knocked on when they want me instead of saying mom. More whining. Constant vigilance. Telling them for the ten thousandth time not to drink the bath water or touch the grill or use the cleaning supplies. But, we press on. And thank goodness for the internet so we can seemingly be there for each other! Praying for you!!!

  2. WTF is Lack of Normal Psychological Development Unspecified? That made my stomach just do a flip and I started crying. Oh and the person who said the things you write about Cooper are shocking can fuck off. You write what everyone else has felt at one time or another. you are a person not a robot.

  3. Oh mama, have a hug. I have also been accused of saying shocking things about my son, but sometimes the behavior of autistic kids IS shocking. Parents of neurotypicals simply cannot understand the horror of watching your kid seriously injure himself or others, or the verbal stimming which can consist of screaming for hours upon hours.

    Everytime I get an evaluation for my son I’m thrown into a depression for weeks. I’m getting to the point where I’m considering tossing them in the garbage without reading them. How many times does a mother need to see the words “far below average” written about her child? While I’m sure these evals are important for school and therapists, as a mom, I can no longer bear it.

    You are so not alone.

  4. This is me, I could write this… Except we have three boys. Seb is the middle one about to turn 5. His big brother is 11 and younger one just turned 3. Autism isn’t a gift. I hate autism. He was diagnosed at 3 and 1/2. I knew, we knew… I cried for weeks. I couldn’t listen to radio because as soon as sad song would come up I would cry. And yes, it comes it waves. I feel like it’s two step forward, one step back. And I hate it when we go places and I feel like I have to explain some of his behaviour. It takes strength and is constant heart break. And then we have to take care of our other children, make sure they are ok, all our children need us…Because we love them to the moon and beyond. 💖

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s