I Thought By Now…
I thought by now I would have mastered autism. I truly did. And that I would be the one giving advice to other mamas. I thought by now that my nonverbal boy would be talking away. And potty trained. I thought by this time we would be so much farther along.
We are not. In some ways we are in the same spot. Standing still.
I just spent 5 minutes scrolling through Pinterest. I entered one word into the search box…Autism. I wasn’t sure what I was looking for. Maybe hope. Or maybe something to trigger the big cry that’s sitting in my chest. We are really struggling with potty training. And transitioning. Lack of language. Diet. Lack of awareness. And a mother that fears that this is it. This is my future. Cooper is going to be five. Five efffing years old.
The list of things he can’t do far outweigh the things he can do. The gaps are getting bigger.
I am spiraling. I can feel it coming on. It’s creeping up fast.
We spent the weekend at the lake. And the reality and normalcies of the world were right in my face. The normal children were everywhere. Yes, I said normal. And that’s the exact word I choose to use. I watched them all closely. Because Sawyer was right there with them.
Sawyer dug a hole. Cooper ate sand. Sawyer filled a dump truck. Cooper threw sand at kids. Sawyer brought the truck down to the beach. Cooper ran on the dock. I frantically ran, with a broken ankle to catch him all the time knowing if I ran he would run. I tried to stay calm and practice what we learned. “Cooper. Stop. 1, 2, 3. He thought it was a game. Sawyer pushed the truck back to the sandbox. Cooper screamed. Rolled. Hit his head. Sawyer made a friend.
My two sons. 2 years apart.
It’s not fair. I thought by now this would have passed. I thought he would have learned to see the fun that could be had. I thought he would have learned to see the other kids. See his brother. See the world.
Cooper won’t really do anything but watch his movies. He may go down a slide once or twice at a park or throw a rock into a lake but then he is done. Just like everything else.
I look at pinterest and I feel like a failure. I should be doing more for his diet. Working on potty training nonstop. Taking the iPad away. Shutting the tv off. I need to teach more. More. Always more. More patience. I should be doing PECS. And getting more services. Add it to the list.
I am a logical adult. He needs to be learning. Interacting. Socializing. He needs more therapy. More. More. More. But I work. My husband works. I am tired. He is tired. Everything is a challenge. Everything is a fight.
I need to do more.
I spent the quiet drive home last night thinking about Cooper growing up. And do I put him in a group home. Yes, cart before the horse. But the thought crept in after I struggled to drag his screaming, kicking 45 pound body off of a dock.
I truly believed from the bottom of my heart that his autism would improve. Not be cured. But improve. I thought by now he would learned to say words. And cope. And make a friend. Get a hobby. Learn to play. I thought by now it would have gotten better. I thought by age 3. And then age 4. And 5 is around the corner. And I can’t even think about it. The thought of him being 5 makes me ill.
I know where this is coming from. It was the other children. I watched them play. Make friends. Run around. Swim. Fish. Dig. Build. I have never played with Cooper. Never.
Cooper watched movies.
I realized this weekend that he won’t be able to go to a public campground much longer. Not unless his awareness improves. It was a hard moment. I started to spiral. I am not going to be able to bring him much longer. And I know that people don’t believe me. And I know that they think I am lying when I say, ‘We can’t go there or We can’t do that.” It’s not my choice. We just can’t do that.
I was chatting with a friend about Cooper. And I said…‘It just isn’t fair. Why me? What did I do to deserve this?” And I got a response I have been seeking out since day one. He said,
“You are right. It really, really sucks. And it isn’t fair. You got dealt a tough hand kiddo. And that’s a fact.”
I just looked at him. No sugar coating it. No trying to force me to find the good. The joy in it. Because at that moment I didn’t see any.
I had to choke back the tears that immediately pooled in my eyes. He was right. It really does suck.
For the summer, and since special needs preschool is not in session, I have my son in a large daycare that accepts a few autistic kids. I’m floored by grief every time I drop him off and pick him up. When he’s at home with me I don’t focus on his differences so much, but when he’s at daycare, there is no way not to compare him to the normal kids. It’s like getting hit with a sludgehammer twice a day. I often leave crying.
I have never taken him to a public campground and never will (his verbal stimming is too bad). People don’t understand why I don’t take him out places, but I can’t manage his 40 lb flailing body when I’m disabled myself. It’s hell. People want us to paint a pretty picture, but it’s NOT pretty, and I will not twist my truth to make other people more comfortable.
Also, the amount of “homework” I’m supposed to be doing with my son is staggering. There is no mom, even one fully healthy and staying at home, who could manage such a list of things to teach. I will do my best, but if I’m honest here, I’m dropping the ball on his therapy homework. I am a person too, and cannot devote every single second of my life to teaching my dear son. Someone has to pay the bills, get dinner on the table, clean the house (a serious challenge with a destructive autistic in the house)…I simply do not have the time or energy to be my son’s round-the-clock staff member. Call me a bad mother, but girl, I just don’t know how we’re supposed to do it all!
YES to everything in this comment. You just summed up exactly how I feel. My other son learns by watching and observing. He learned how to use silverware and drink from a straw and do sign language. With Cooper….every single thing had to be taught. Over and over and over again. And hoping he doesn’t lose the skill. So, it is so hard to always be teaching. And forcing him to do things he doesn’t want to do. It’s all hard. Blah. I’m in a gloomy mood today.
My son was just diagnosed in May. I have huge expectations but I wonder if that is fair to him. Even thought I am deathly afraid and having to change my whole life, I look at him (2 going on 3) and I know he has my heart and I am just going to do this somehow, somehow. Love to you and your kiddos.
You will make it mama! Trust me. We want the best for our babies and that will mean sacrificing everything else for them. Hugs to you!
I have been reading your blog for a couple of months now, and I just want to say how much I appreciate your candor. I relate COMPLETELY to how you are feeling, especially the roller coaster emotions of hope and fear. My son turned four last week and was just diagnosed in May. It took forever to get the diagnosis, but we knew it was coming. He has been receiving speech, OT and preschool both privately and through our school district for the past year, but the results have been extremely underwhelming. It can be so deflating, especially when you run into a “normal” four year old and are reminded how wide the gap is becoming. Now that we have our diagnosis, we are in the process of setting up ABA, so I hope that brings some greater strides…. trying to remain positive and hopeful. Thanks again, and your kiddos are simply adorable!
Hi there, Sorry for the delay. I took a little blog break. I felt like I was on this sad spiral and I had to stop writing and thinking and just take a step back. Thank you for reading! My goal is to always help other parents out and let them know I am on the roller coaster too. And that it’s not all roses. Autism is hard. And challenging. And so lonely. Hugs to you! Thanks for reading.
What I am working on, but I think applies to everyone: know the difference between expectations and agreements. Expectations are one-sided decisions about how and what we think should happen – in life, in relationships, with our children. They only hurt us because they inevitably lead to disappointment. Either we have agreements or we have nothing. We have no agreements with God. Disappointment is, of course, a condition of human existence. However, being conscious of how we are undermining ourselves with one-sided expectations goes a long way towards neutralizing the negative drama that plays and replays in our head. It is not a miracle cure for suffering. But it *is* a step towards calm and peace.
Often think about you and Coop – hope you are doing o.k.! Thanks for being honest and sharing from a true point of view instead of sugarcoating as we often tend to do. It really helped me with coming to terms with some of my feelings.
Aw! Thank you! Cooper and I are surviving. I haven’t wrote in forever….his schedule is sucking the life out of me. I can’t seem to get a grip on anything. Thanks for reading!
We are struggling with potty training too. I had to leave work early today, because she decided to get up pull her diaper off and smear poo all over her room.. she is 4. She has come along way and has language but so much of it is Echolilia, I can’t tell if she is talking to me or reciting tv shows. Then she will go through periods where she seems normal and maybe this may even pass. and then the hands flap, and the constant repeating of phrases yanks me back to reality,,, Today wasn’t one of those good days. hugs to you and your family. I know how hard this is for you all..