Joining the Club
I received an email from a fellow autism parent. It was so raw I actually cried when I read it. I wanted to crawl through the computer and hug this person. It resonated with me so deeply.
This person reads my blog so I know they will see that I used their email. I just can’t stop thinking about it. I could have written this myself. I so get it friend.
I read it this morning. I actually stumbled across it in my junk mail folder. I almost missed it.
“I’m scared to death, broke, broken, exhausted … all of it. It seems like most of the autism dad’s bail. I understand how they can get to that point.
Autism has ruined everything.
Not sure why I am emailing you … I guess just to have myself counted as “in the club”.
I sure wish we could all have a miracle. How easily we could all make it through a normal life.”
I want this person to know, and every other single parent that feels this way, that it is OK to think these thoughts. And I completely understand. I used to hate myself for being sad. Or angry. I used to think if I could just do more. Be more. I could fix this. But that wasn’t the case.
And I want you to know that you are doing a great job. I know you are broke. And I know you are so scared that you can’t sleep or concentrate on anything else. And I know that you are broken.Because I am too.
But it will get better. I know it will. Just like any other parent we are going to have happy times and sad times and neither will last forever.
I promise you are going to be OK. Just keep fighting. Keep going.Even when you don’t feel like it just get up, get dressed and keep going.
AND GET HELP. Get all the help you can. It doesn’t mean you are weak. Or giving up. Or not strong enough. It means you are human. And our kids need more. More people. More advocates. More love. More hope. Take all that you can friend.
And on the dark days just remember that eventually it’s going to improve. Take it from someone who knows.
This morning was tough. Cooper isn’t sleeping again. Sigh. I woke up twice last night and then again at 4 am for the day. No crying. Just awake and ready to start the day. The exhaustion is real my friends.
I also found out that Cooper can’t ride the bus from our new house to his morning school. FML. So Jamie and I will have to drive him for the rest of the school year.
I am also really struggling with the decision to not mainstream Cooper. I firmly believe in my heart that he isn’t ready for traditional school. And he may never be. I am leaning towards sending him to an ABA school with 1 to 1 behavior therapy all day.
I’m scared that I am giving up. Or I am scared that I am making the wrong decision. I want someone to make it for me. Tell me what to do.
I’m not a teacher. I’m not a psychologist. And I most certainly don’t have a crystal ball that tells me the future. What I do know is that Cooper can’t sit in a room and learn. He can’t sit period. I feel like learning to read and write is so far behind learning how to socialize and function. I want him to succeed. I want him to be happy. And I don’t think Kindergarten is right for him.
Am I giving up? Or am I making the right decision? How do I know? And I am making this decision alone. And that is so unbelievably scary. More to come on that though. I just filled out that 20 page application today. Talk about depressing. I wrote the word ‘severe’ more than I ever thought possible.
Anyhow, so when I say that I understand that you are scared to death, broke, broken and exhausted, please know that I am here for you. Feel free to lean on me anytime.
We are in this club together.
The very early morning wakenings started with my non verbal son around age 5 as well. Many, MANY children on the spectrum get up super early and ready to start the day. Something in their brain! My husband and I were on the verge of collapsing until we started our son on melatoin. If you haven’t talked to your doc about melatonin, I would in the very near future. Good luck with the decision about ABA vs. mainstreaming. It’s a hard decision, but you know Cooper the best and what his needs are. We are very lucky in MN to have options. Filling out that 20 page app is the first step!
I think the 1:1 ABA school is a GREAT idea!! Mason has been in that type of school since he was 2. He does also participate in a mainstream pre-k class, but he has the 1:1 all day and gets pulled out for 4 hours of ABA. I think it will be great for Cooper. Mason’s school ends after K-I wish it went up to 12th grade! These types of schools are great and are much different than the public school system-the individualized treatment the kids get just cannot be compared!
Think so? I’m super torn.
Yes totally!! I say go for it! It’s not a bad thing or doesn’t mean you are giving up. I’m not sending Mason to regular K he is staying in his ABA school with the 1:1 all day 🙂 although he will be integrated in regular K for part of the day at the private school. Does the ABA school have that option?
Please know that you aren’t alone in your struggles, and this post isn’t a recommendation of something “to try.” Lord knows, each child with autism is so different:) I found this blog (http://faithhopeloveautism.blogspot.com) in December, and although I know nothing about the RPM therapy he uses, the blog gives good insight into what an autistic child is thinking. That in the midst of the heartache, there IS a voice inside Cooper. I know you believe that, but don’t forget that in the difficult moments. You see…the boy in the blog has severe autism and no speech, yet learned to express his feelings through writing in middle school and what he writes is pretty amazing. It gave me insight into my own son who is only 3. One of the things they say over and over is to “presume competence.” I just know that your son will be OK…it isn’t going to be what we all envisioned for them when they were newly born and we made dreams for them. But it’s never that way. My typical 10 and 13 year old aren’t exactly what I envisioned either. You’re tirelessly watching over Cooper. Just remember to presume competence moving forward….he does know what’s going on in your world. He’s watching, learning, observing…perhaps having an internal dialogue of sorts. Hang in there, mama. You have many supporters out here.
I felt the same way re special Ed vs mainstream preschool. I felt like I was giving up too because my son was in a mainstream preschool then doctors and early childhood educators were convinced a special Ed school where he could get one-on-one support constantly would help him push forward. I literally felt like my heart was ripped in two…but in the end we decided to go for it. He found it hard at first… Behavior problems seem to worsen but then I found out that at school he was doing way better just releasing at home. We started seeing progress. I would say that my son has a love-hate relationship with ABA therapy. It can move them forward but he gets pretty feisty about it if they don’t presume competence and treat him like a baby. But at the beginning it really helped with teaching him the skills to be able to sit in the classroom do circle time follow all the routines including washroom routines and snack routines. I am glad we did it. I say follow your heart…. My son would now tell me that what is hard now is being in the regular classroom and not being able to follow along or people presuming things and not helping him when he needs help. He makes the choice to go over to the special ed classroom to make sure that he gets the extra help he needs he now advocates for himself. Good luck