I Need To Step Up My Game.

photo 4So, how did Halloween go? That is the question on everyone’s mind.

Cooper rocked it. He wore his costume and went to 10 or so houses. He even grabbed or took candy and even waved to every candy giver when asked. Towards the end he would get in the stroller in between houses but refused to stay in the stroller when his cousins went up to the house. It was pretty damn great. Little stuff like that means a lot to me. Towards the end he started trying to peek by the people to see if he could sneak in and watch tv. One track mind that kid.

I met with Cooper’s psychologists last week and it was one of the most enlightening conversations I have had in a long time.

First realization, I need to step up my game. I am an Autism mom, whether I like it or not, and my life is different than other parents. And I need to accept that it is hard and that I need to do more. No way around it.

The meeting was good though and we get to meet with them as much as we want as long as Coops is at Fraser.

Right away I learned that Cooper still has autism. I know, I know, that sounds ridiculous but part of me is always secretly hoping that maybe he doesn’t have it. Or maybe they will say…it isn’t that bad. That didn’t happen.

Both teachers were very open and honest. They said Cooper is doing amazing. He is an extremely loving and sweet boy and that they are confident that he will learn to play with kids and participate. I teared up. That’s huge.

They also said that they believe he will communicate with us at some point…verbally that is. He is getting moved up the waiting list for speech and OT. So, that was interesting to here. Remember, I don’t get to amped up about the verbal stuff.

One of the first things they told me is that when Cooper doesn’t want to participate in an activity he goes to the beanbag chairs and rolls around them. She said, “that’s the autism part. It’s the manipulation of toys for other uses.” I have never heard someone say, “that’s the autism part.” I liked it.

Then it was my turn. I talked a lot about the struggles that we are having at home. It was very conversational but I noticed that I was acting a bit desperate. I talked about how meal times are absolutely awful. Dinner is a fight again and the hardest part is that pre-move we worked a year to get meal times to a good place. And I talked about how the kid is obsessed with TV and movies and we hide remotes and THE THROWING is out of control and that NO doesn’t work and blah, blah, blah. I started a word vomit of sorts. They never interjected and I just kept unloading.

They listened to my whole rant and then they gave me ideas to try to make it better.

I got mad. Yes, furious actually. I didn’t want ideas of things to try. I wanted them to tell me that it’s ok that I give up.

I don’t want to try anything else. I want to give up or have my life be easier. One of the two. I am so tired all the time. Tired of the struggle and the fight.

Looking back I think I wanted sympathy and for them to acknowledge how hard it is to have a kid with autism and that it’s ok if I don’t do structure ALL the time. They see kids for 4 hours a day and they are done. I wanted them to know how hard it is the other 21 hours of the day.

But they didn’t say anything like that. They gave me even more ideas and told me that they will be with us every step of the way. It was a tough love moment…and exactly what I needed at this point in my life.

We are moving into a new house this weekend and starting fresh. It’s time to take control.

I get it now. My life is different. And I need to suck it up and try harder.

photo 3 photo 2

 

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6 thoughts on “I Need To Step Up My Game.

  1. Love that Halloween update Kate! Sometimes we do need tough love…I wish I could tell you publicly why I know that to be true, but I can’t. I can say though, I needed to hear very frank and honest advise at a point in my life too that made me think, you know they’re right. Suck it up buttercup. Hugs Kate!

  2. All that’s fantastic news that Cooper had a wonderful Halloween. It sounds like you did too😃 I love how honest you are on your blog about how frustrating it is at times and how desperate we can feel and become. I agree I can’t believe how tired I still get it times and how I feel like I’m juggling so many things while I listen to what I call the “latte moms” enjoy the coffee at the playground why have to pay attention and then start planning how the rest the day goes. As autism moms we definitely are walking down a different path but one of the things I can offer to you is that how it helps me be a better mom or a different mom to my so-called normal child. I am more aware more knowledgeable now and consciously more involved than I think I would’ve been before even though at times it’s a bit hard because I’m tired or my son needs more attention or help for me. As for the tough love I think we need that from time to time because we are juggling so much and even though the professionals are experts in their field you’re right they only have our children for a small part of the day and then they can give them back to us. I’m glad that they were able to give you some strategies and promised that they would be there to listen and to give more assistance and advice. I also like that they have so many positive things to say about Cooper and then their minds that he is making progress and that he can do more. They are presuming competence and that’s massive when you’re dealing with an autistic child or anyone with a disability. So good luck with your move to your new place and a fresh new start.

  3. Awesome. I agree with all other comments. Pick yourself up, set up some structure, and hold your little boy accountable when you can. I have to prompt Landon sometimes for every word or sign and it is exhausting, but it does work. It’s not fair we have to go through this, but I think we are better moms because of it. XO

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