A Thankless Job

Yesterday we had another weekly visit from Cooper’s crisis social worker. It was great as usual. We laughed and told stories and talked about ways to help Cooper. More specifically ways to make life easier. I mentioned how the week before the electricity was out at the house and I lasted 15 minutes before I threw him the truck to watch a movie. That kid cannot survive without technology. In a 15 minute period he melted completely down over no WI-FI, useless remotes, VCR’s, DVD players, TV’s, kindles, etc. It wasn’t a pretty picture.

So, as we were driving him around, I was quickly reminded that Cooper won’t eat out of a drive thru. Not only does he only eat a few foods, he can’t always manage to feed himself finder foods. Like biting a chicken nugget can be challenging for him. He needs it cut up. That’s the apraxia side. Biting with the front of your mouth can be tough. Also, he only drinks milk and apple juice…out of his cup…or a Capri Sun…once in a while.

So. New goal. Drinking juice out of a cup with a straw. Or a to-go cup. Or anything different than his preferred sippy cup. I am so sick of those damn sippy cups. Half of my paycheck goes to buying new ones. He chews right through them. It’s a sensory thing. The crisis worker said bribe the hell out of him to get hm to touch the straw to his lips. Start once a day. Don’t force it. Start small.

As our conversation evolved we moved onto talking about the crisis workers job and how he is a realist. His job can be hard. He sees things he can’t always talk about. He isn’t about providing hope….he’s here to provide support. And make life easier. Lord I love this guy.

He told us a story about an autistic teen who watched his dad get murdered. And how the teen boy could not process it. He couldn’t get the words out to talk about it. Can you imagine? I told this guy that I often wonder if Cooper would notice if I died. I think about it a lot. I know that sounds weird but it’s a really valid question. And a sad part of nonverbal autism.

Cooper has very basic needs. He needs food, milk in his cup, someone to wipe his butt, change his diaper, press play on the remote, enter in the 4 digit code on the IPad, drive him to and from school….that’s about it. Anyone can do these things. These aren’t necessarily mom things. Or dad things.

Yes, Cooper wants love when he’s sad. Hugs when he gets hurt. Clapping when he does something well. But, I truly don’t know if he needs them from me. I will spend hours at night wondering if he would notice if I never came back. Could he express it? Would he take my picture to people and point to my face wondering where I am?

I think the answer is no. And that really hurts my heart.

Being a special needs mom is a very thankless job. It’s different than parenting a typical child.

It’s really sad.

Anyhoo, I wanted to share a blog post that was on The Mighty today. It’s called, ‘To The Rock Star Mom of a Child on the Autism Spectrum‘ written by Teresa Cooper. Here is a link to her blog too. 

This blog really touched me. We question everything. We live off of caffeine. I once had a lady comment about my coffee drinking at 4 in the afternoon. Ha ha. We live in a world of exhaustion and failure with very few successes.

Dear mom of a child with autism,

I know you might be tired — tired from lack of sleep, worry and frequent meltdowns. You drink so much coffee, your blood is 80 percent caffeine. No one seems to understand your child or what you go through every day together. Almost daily it seems someone looks expectantly at you to gauge your reaction, as if to say “Surely you can do a better job,” because they think your child is throwing a tantrum over a toy.

You question yourself and your mothering abilities. If you work outside the home still, you may question working. Daycare systems sometimes lack the training to properly care for a child with autism. You deal with a lack of consistency in your child’s services at school. Some of your coworkers totally understand your situation, and others judge it, so you never know where you stand. You think that if you talk about all these feelings, people will think poorly of you, so tuck away the feelings and try to hide them from the outside world.

I know how you feel, because I feel it too.

Here’s the thing, though. You may feel exhausted, rattled and even useless sometimes, but you are a rock star. No one else knows how to calm your child down like you do. You are the master of the paperwork, the queen of IEPs and the expert negotiator. When it comes to advocating for your child, you work tirelessly to campaign for fair treatment and understanding. You take care of all the big stuff, but you also kiss the boo-boos, play with dinosaurs and dolls, and learn about your child’s favorite television shows and books.

You make a mean macaroni and cheese. You can get pre-tied shoes on your kids’ feet in record time. You find treasures in the dollar bin and can turn almost anything into a reward. You can spout out “first, then” statements like no one’s business and know the difference between a tantrum and a meltdown. If anyone asks, you can tell them where to find what exists in the community for children with autism.

Your children love you, and they know you love them. They know because, in all the ways that count, you show them.

Finally, remember your successes. Today you may not have found victory, but don’t feel defeated yet. Rejoice in all the victories, big and small, you have achieved with your child already. Remember that somewhere in the future, you will find more triumphs.

You’re a beautiful mother with a gorgeous, magnificent, dazzling child who simply sees the world differently than anyone else. From one mom of a child with autism to another, I encourage you to keep at it. You’ve got this.