Pacing

May 19 2019.

Anxiety. Ugh. It seems To manifest itself in several different ways for Kyle. This weekend it was a lot of pacing back and forth. I guess it’s better than a major meltdown with the whole throw up deal. But the pacing sometimes causes me feel anxious. Which then makes Kyle more anxious. And then I question why in the world God thought Kyle and I would make a great mother/son pair?! πŸ€¦πŸ»β€β™€οΈ

Anxiety sucks no matter which way it’s expressing itself. Maybe that’s why He gave Kyle to me? Cuz he knew I would understand to some degree what Kyle experiences. But I swear our anxiety feeds off each other sometimes and it’s awful when it does. I’m glad tomorrow is Monday and we are back to the routine! It’s best for both our anxiety!

Change is a good thing

5/16/19 This morning we had a team meeting. Erika, Marie and myself. It went really well. I have struggled a bit trying to read Marie. Which has caused me to stress a lot more. Today she explained how she isn’t used to parents being involved (what? How can you NOT be involved with a program like this?!) so her first thought isn’t to communicate with the parent! But agreed to be better at that!

We went over the hardest part of the day when she’s here-bath time. After going over the problems and where the difficulty was starting, We decided to tweak her role and slowly incorporate her in the routine. Kyle needs her to be slowly added to his routine. He can’t handle it all at once. He’s like this with most things. They have to be broken down and slowly added.

Marie is awesome at jumping in. She’s not afraid. And is willing to put in the hard work. And I totally appreciate that about her. But sometimes for Kyle, it’s too much. And that’s what was happening at bath time.

We decided that I would get him undressed and into the bath. She would then come in and bathe him. Immediately reinforcing him with a piece of candy. All While reminding him as soon as he’s done washing Mom would come in and help him get out and mom would get him dressed.

She came this afternoon, and I’m happy to report it was best session yet! Not even one meltdown. Not one! 😁 the bath time routine went fairly smooth. A couple of hiccups but her and I talked it out afterward and know where we need to fix things next time she’s here! But he got into the bath and out of the bath without crying or throwing up! πŸ™ŒπŸ»

Did I say he had NO MELTDOWNS?!None. Not one. And he was so compliant with her. He tests her on something’s but she follows through every time. And that’s huge with Kyle. Establishing consistency is key with him, so he knows what you expect. Marie establishes that on day one.

Marie is different than Erika. But it’s a good different. She is a new pair of eyes and challenges Kyle in ways Erika and I wouldn’t. She is determined and Unafraid. She cares about Kyle’s success, I can tell in the way she works with him. She is so good at not changing her tone of voice even when Kyle escalates. She is so good at talking him down from a meltdown. She isn’t afraid to give new ideas. And definitely isn’t afraid to challenge me when i suggest it might be too difficult! πŸ˜‚Change is hard. And sometimes change requires patience and work. But change can be a good thing. A really good thing. Marie is good for not only Kyle but me too.

Today we came a little closer to the light at the end of the tunnel. But I’m excited to see where Marie takes us. Where she takes Kyle. I have a feeling she will take him far! ❀️

The good ol’ days

May 15 2019

It’s Wednesday so Erika came today. I miss the days when Erika came everyday. When Kyle didn’t flip out and if he did she knew how to handle it. I miss the days when she calmed my nerves just being here, cuz I knew she knew Kyle as well as I did.

It’s funny how when you’re doing life and you think it’s hard…but you fast forward to when life is really hard and wish you could rewind to when life wasn’t as hard. Cuz this part of life is super hard.

I see light at the end of the tunnel with Marie but it’s really far away. And in order to get there, I have to put a lot more sweat, tears and throw in some Kyle puke along the way.

Ugh. Why can’t life be easier?

18 minutes

18 minutes. That’s how long kyle sat on the bathroom floor tonight refusing to get into the bathtub. Before that it took 13 minutes of sitting in the hallway. If you asked if Marie was here today, the answer is yes.

Today I let her do almost everything. Even when I thought it was too much for Kyle to handle. I tried to just walk away. And you know what, most of the time he did what she asked of him. Even when I thought for sure it was going to turn into a meltdown.

But come bath time, I think he was done. That stubborn boy cried and kicked and hit himself and threw whatever was in reach. Until James came and barely got him into the bathroom where he sat. And sat. And cried and kicked and hit himself some more. And said no about 700 times when Marie told him to stand up and get into the bath. All this for 18 long minutes.

Somehow her and I lifted his legs over the tub and got him to finally stand up. 18 minutes later. Because he decided not to comply she gave him a bath instead of me so the behavior isn’t reinforced.

She walked out sopping wet. I know this is part of her job. But man. How does she do this? It’s not even her child. I listened in Kyles room as she bathed my 15 year old who splashed her, grabbed her, and threw up in protest. And she remained calm and collected the entire time. There are truly amazing people in this world.

He got out and got dressed and said good bye to Marie about one million times.

Tuesday, Thursday, and Saturdays have become days I dread. And I’m pretty sure kyle dreads them too. And I’d never know it but i bet Marie’s favorite client isn’t Kyle! πŸ˜‚ I know these days will be harder than normal. But I am grateful Marie shows up and greets me at the door with a smile every time I answer the door. I know the hard work will probably not ease up for a while. Probably a long while, Kyle is stubborn. But I know it will help Kyle in the long run. So I’ll keep showing up on Tuesday Thursday and Saturday and putting in the hard work. And I’ll keep thanking God for amazing people like Marie who show up and put in the hard work too.

The problem

I’m sitting in my car around the corner from my house. Marie is there. Erika strongly suggested I not be there today for session. She’s probably right. She is right, who am I kidding.

As I reflected on the mess that occurred on Thursday, I was able to see that I am the problem. Well, not the problem. But the “problem”. Kyle relies so heavily on me when he is anxious. So when Marie, or anyone new, is there and Kyle is anxious he thinks he needs me in order to ease that anxiety. But in order for him to get used to Marie and Marie to learn Kyle, I need to step back. I need to allow Marie to be that comfort to Kyle. And let him learn to trust Marie. I need to let go and allow Marie to care for Kyle. And that is hard. So hard.

Thursday he was trying everything to get me to rescue him from his anxiety and puking was his way to tell me. Had I been out of sight and let Marie handle him, it never would have escalated. See, I’m the problem. I want to rescue him….to ease my anxiety and his. But I can’t do that if I want Kyle to progress with Marie.

So many times I don’t allow people to help with Kyle. And it’s not on purpose. Or maybe it is. I guess as Kyle’s mom I feel that I am the only one that can do it. But I need to stop and allow others to care for him. He needs to know that’s it’s ok for other people to help him-besides me! That my way isn’t the only way. Allowing others to care for Kyle is essential for Kyle. For him to understand that slight changes are ok. And in the end it’s essential for me too.

Sometimes I think Ive got this mom thing down. In fact sometimes I think I’m a pro. But then in these moments I realize I am far from pro. I have so much learning to do. And I’m probably going to screw up a million more times before I’m done. And probably shed 2 million more tears.

Kyle is hard. I’ve said before, and I’ll probably say it forever. Motherhood isn’t what I pictured. But I’m grateful for my journey through it because of the growth it forces on me. I am a far better person because of it. Even if it makes me cry sometimes.

Kyle=1 mom=0

I’m crying as I type this out. Not just crying. I’m sobbing. I’m emotionally exhausted. And I wanna quit. But the problem is, that’s not an option. Which makes me cry harder.

Marie came today. I know I need to back off and let Marie take over. I feel it from her. She’s even mentioned a few times it’s easier when I’m not in Kyles view. But it’s so hard for me. I know him. So naturally I want to jump in and tell her how to do things. Which isn’t helpful in the end, she is learning and he is learning to accept the way she does things. It’s good for both of them. But as a mom it is so hard to listen to him struggle. It’s hard to listen to her struggle to get him to do things. His screams in refusal to comply are so grating on my nerves. I think today I reached my breaking point. And I broke down.

Bath time came and he made it upstairs but refused to get undressed. He screamed “noooo!” About 35x. I threatened to have Marie bathe him. I threatened to take away the iPad. I threatened to take away the tv. Nothing worked. Finally I got james to help get him into the bath. Where he cried and cried. He was mad, I was mad. It was rough.

He got out still screaming and crying and guess what he did….threw up. I immediately broke down in tears. In front of Marie. He took two more steps and threw up some more. By then I was so mad at him. I was sobbing. Poor Marie. He then needed another bath, but he decided to be an even bigger punk and sit down. At that point a rub down with a towel and soap was all we were gonna get done. We somehow got him dressed.

All he wanted was a hug from me. I knew this. But I was so upset at him. so frustrated. And emotionally drained that I couldn’t hug him. What kind of mom am I? I feel even more horrible knowing that I’m making it worse. But I couldnt do it. I was so mad at him. Mad at how hard he makes my life.

I walked downstairs, still sobbing where I said to James through my tears “I can’t do this!” My poor husband didnt know what to say. I dont even know what I needed him to say.

I was downstairs a few minutes when Marie yelled down-“I need another towel and more carpet cleaner, he threw up again!”

I don’t know how I am going to keep doing this every single day. I don’t want to. This sucks. It is so hard. Harder than I can even describe.

I go upstairs and see his pajamas that he had on less than 5 min, covered in more puke and his just washed sheets covered in vomit. I immediately felt the tears come on strong. Marie got him into the bath and bathed him for me this time, knowing I was melting down. I cleaned up the bedroom while tears streamed down my face. And walked downstairs carrying several puke filled towels and cried more.

I am strong. I know that. But I am not this strong. No one should have to be this strong.

Justin and cody walked in from being at grandmas. Justin immediately saw my tears and asked me so nicely if I was ok. I shook my head no. He immediately started doing his chores! πŸ˜‚ Cody has told me he loves me about 20x.

After I tried to pull myself together I walked upstairs and tried to muster up the words “I’m so sorry I lost it” to Marie who reassured me that it happens to all of us. She was trying to hold back tears too. Today was a rough day for all of us.

Most days I am able to hold it together. Most days I smile and say I’m fine-even on hard days. Most days I suck it up. Most days I accept the cards I’ve been dealt. Most days I try to be grateful. But some days are just too hard and I break down and just sob. Today was one of them.

Exhausted

Marie came today. Kyle didn’t throw his shirt off and scream noooo! when she walked in so I thought it would be a good day. And I guess overall, we’ve had worse days. But I’m exhausted. And i hate autism. And fragile x. I hate that most of my days are exhausting.

Kyle decided after dinner he wasn’t going upstairs to get in the bath-for whatever reason. He decided to lay on the living room floor and refuse to get up. We let him lay and play with Gooding for quite a while before Marie places the demand to stand up and go upstairs. It went down hill from there. I’m not sure why. But it did. We struggled with him, tried to bargain with him, and I threatened to take away his iPad. None of which worked. And he progressively got worse.

After 30 min James came home and I had him get him standing up. Then he walked to the stairs and immediately sat on the stairs and proceeded to cry and hit himself and threatened to throw up several times. I’m amazed and in awe of the patience that Marie has with Kyle. She always stays so calm. Kyle doesn’t seem to phase her. It’s such a comfort to me.

After 15 min of me standing there begging him to go upstairs I walked away. Marie calmly talked him through the meltdown. And eventually he stood up and walked upstairs and was near perfect for his bath. The very best part was he didn’t throw up. I’m exhausted. I’m still trying to see light at the end of the tunnel with Marie. I’m still trying to remain hopeful that one day Kyle won’t be as hard. That one day all this hard work will pay off. That one day autism and fragile x won’t win. That one day I won’t be so exhausted!