Fear=reality

2/13/19

One of my fears with getting a dog for Kyle was that he would become so dependent on the dog that he wouldn’t be able to function without the dog. Well, my fear has slowly become reality.

Kyle has become so dependent on Gooding that fairly easy tasks or even preferred activities have become extremely difficult for Kyle to accomplish- unless the dog is visible. Kyle also struggles when Gooding goes outside or the kids take him for a walk. To say it’s frustrating is a complete understatement. I’m over it.

This was Kyle today toward the end of his meltdown because cody took Gooding for a walk around the black. He was gone 10-15 min and Kyle didn’t get up off the ground and calm completely until the dog was home.

Why can’t something just go super awesome for once? How come something I do to try and help Kyle just help him? Ugh. I am meeting with Erika tomorrow to come up with a plan to help overcome this bump in the road.

Always. Always something to work on.

Another day in the life

3.9.19. Have I said how much I despise weekends? Well I do. They are long days filled with meltdowns by Kyle. And eventually my patience dies and I have a screaming meltdown which leads to me yelling and more of Kyle crying and kids that think I’m mean. And a husband who probably thinks I’m crazy.

I have a sore throat and achey body but that means nothing. Except my patience dies quicker.

Kyle was up yesterday at 5:15-probably because he knew he wasn’t going to school. Because he NEVER gets up by himself on a school day before 6am. Then this morning again 5:15am he’s up. What did I do to deserve this? Seriously.

We decided to take a drive this afternoon. Like most saturdays. But he won’t get in the damn car without the damn dog. We are trying to make him less reliant on the dog. Because he has become so dependent that it is disrupting skills he has mastered without the dog but all of the sudden cannot do it unless he knows Gooding is right there. He doesn’t like when Gooding is outside or on a walk or not in the house in his view at all times. It’s super frustrating and a fear I had would happen when we were contemplating a dog. And of course here we are dealing with it.

Back to the drive…he had a major meltdown when we told him no dog for the car ride. He screamed and cried and sat down. Stripped. Hit himself. James can usually get him into the car but kyle got outside and threw up. All while a young mom and her kids were trying to take a walk. Super awesome.

I hate moments like these. It’s embarrassing. It’s awful. The woman turned around and walked the opposite direction. Away from us. I’m sure I would have done the same thing if I was her. But it still stung. It still sucked. I hate this.

At this point We got him back in the house and didn’t go on a drive with him. In order not to reinforce the behavior, he didn’t get the drive. He has to learn that the dog is there to help him when he needs him not something Kyle relies on for everything.

Moments like these make me hate the life we have to live. HATE. It’s not fair to any of us.

The day went on. A few more meltdowns when I said no to food or his iPad wasn’t doing what he wanted. Then….

Cody was getting ready to take Gooding on a walk and kyle lost it again. My patience was done. He got up stairs and refused to get undressed and into the bath. He was crying. I took his iPad away and turned the tv off. He still refused. The frustration level was at maximum. Finally after he knew my buttons are all the way pushed he finally got up and into the bath. Still crying of course.

I just want to give up. I’m so overwhelmed. Erika is only coming in once a week and it’s not enough. I’ve reached maximum capacity. I’m done.

The problem is. I can’t be done. I have to wake up tomorrow with a sore throat and endure another effing day. And if he still has a runny nose on Monday, guess what he stays home AGAIN. I keep praying for relief but a couple of hours or a day isn’t enough. I feel like there is no light at the end. And that is so depressing.

I finally text Erika tonight to tell her we need to get someone else in here more since she can’t be. I need more support. She is going to work on that. But in the meantime, I have to still show up and suck it up. Every single day. Cuz this is my life.

3 day weekend

March 7 ’19

Welp, Kyle woke up stuffy and is now full blown sick. Which doesn’t mean he lays around and relaxes. It just means he is cranky and has a yucky nose. AND has to stay home from school. So here we go…3 day weekend. Awesome.

Praying he is the only one who gets sick and praying it’s gone by Monday. ๐Ÿ™๐Ÿป

THE missing piece

03/06/19

Today while the kids were at my moms for session with Erika, I mopped my floor. Yup, that’s what I did, for the hour and a half I was kid free. Then I sat in the quiet and admired my clean floors…that would only stay clean until the kids and dog came running through my doors. So for a grand total of 45 minutes, my floors would be clean.

While I sat in the quiet, my mind wandered. It started to think of all the things we have tried with Kyle. Stuff we have tried in hopes to make his and our life easier. Some causing a lot of sacrifices. Like getting a dog.

We got a dog for crying out loud. I am not a dog person. Like not even a little bit There I said it. My house has always been my safe place. I love my house. I keep a very tidy house. Having a dog has infringed on my safe place. There is hair everywhere. I hate it. Having a dog has caused me greater anxiety and even made me realize I have some minor ocd tendencies. We now have 4 vacuums. Yup, 4. The roomba that i run throughout the day, a shark for the carpet, a dyson upstairs and the dyson cordless downstairs for the hardwood. And I vacuum at least 3x a day and I have my kids vacuum in the evening. I have a candle burning all day. Plug ins in every outlet to make sure my house has ZERO scent of a dog. Even my car has dog hair in it. I can’t escape it. Sometimes I feel crazy. But I seriously can’t help it.

Kyle loves Gooding. And Gooding is a great dog. I would even go as far as to say I love the dog…now. All my kids love him. I am grateful for the joy he has brought to my kids, especially Kyle. BUT with that joy comes sacrifice and anxiety for me. A lot of sacrifice. I live for Wednesday when the dog goes with Kyle to my moms for session. Because I can vacuum and mop my floors, and for a short period of time, I can pretend like my house is dog free.

Did Gooding do all the things we hoped he’d do for Kyle? No. Does he bring happiness to Kyle? Absolutely. Is it worth the extra anxiety and stress I gained? Sometimes I’m not sure.

I found myself pondering why I continue to try, sometimes, crazy things (Like get a DOG) even with the uncertainty that they’ll even work? I guess the simple answer is, I’m a mom. Wouldn’t you do anything for your kid, even if it meant you may experience hardship? The more complex answer and maybe it’s a mixture of both…as much as I have accepted Fragile x and autism, there’s a small piece of me that hopes with every crazy new thing we try….maybe THAT will be the missing piece that will make our life easier…Maybe this is the answer! So until we find it I guess I won’t stop trying…even if it means 4 vacuums and anxiety meds for me. ๐Ÿคท๐Ÿปโ€โ™€๏ธ Because I’m a mom…with hope.

Good night kyle

March 4th 2019

Twenty five minutes (at least) of this every night…but add in hair pulling and a lot of playing with my face. I try to think of how sweet it is and how it’s his version of snuggling. ๐ŸคจBut most nights it’s hard to enjoy my hair being pulled out and my face being touched over and over.

This is my life

I feel like right when I think things are starting to get easier, I’m instantly reminded that this is my life forever and it will never be easy. And It sucks.

Kyle spent the weekend at his dads. Not long enough for me to catch my breath even. Not long enough for me to regain the strength to keep going. Ugh. I hate this. I hate feeling like this. HATE IT.

When things get this hard, my mind wanders to a year from now or two years then ten years, and I start to cry and can’t breathe. This. Is. My. Life. Forever. It’s not fair.

We celebrated Ethan’s birthday tonight. And I’m upstairs laying next to Kyle crying. Crying because I feel this weight on my shoulders that doesn’t seem to get lighter-in fact it is heavier. He got mad because his iPad won’t connect to the internet. I think his iPad is old and probably been thrown one too many times, so it’s calling it quits. But the problem is he refuses to use the brand new iPad downstairs. He knows the difference. So I fought with him to get his pajamas on and into bed. Now I’m exhausted. Mostly mentally exhausted. And guess what, I get to wake up tomorrow at 5 am and fight more.

This is my life.

He’s been at his dads for a couple of days. Why am I not rested? Why am I not refueled? Why do I feel defeated already and he’s been home all of 3 hours? He doesn’t go back to his dads for another month. I have to do this for another month with no break. Cue more tears. With spring break mixed in. Cue even more tears.

This is my life.

I can usually power through Kyle’s everyday struggles. But my mental strength these days is at empty. I feel like I never get past a quarter tank before Kyle drains me again. And then the cycle continues.

This is my life. And it sucks right now.

First shave

2-24-19

As kyle has gotten older the harder emotionally it has become for me. I see my son growing into a man physically but mentally he is still so young. It’s so hard to watch happen.

For the last couple months, Kyle has started growing facial hair. ๐Ÿ˜ณI know. I feel the same way. I’ve been putting off the shaving attempts knowing it would probably be difficult for Kyle to handle, and plus it meant Kyle was one step closer to manhood.

Tonight was the night though. The hairs on his chin were getting out of hand and his “chops” were lookin long! I was feeling brave and Kyle has “prom” the first week of March, so he’s gotta look sharp!๐Ÿ˜‰ so we went for it! At the kitchen counter cuz where else do you shave for the first time?!

He actually did pretty awesome! And how sweet is James shaving him? ๐Ÿ˜ญ Kyle spit a lot, made the puke face several times but didn’t puke, and swatted at us the whole time but overall he did pretty good! I can guess the sensory overload he felt was pretty high. A buzzing, vibrating thing going over your face! He wanted a car ride at the end so we promised he’d get it if he made it to the end! Anything if he let us get to the end! And he did!

As soon as the razor was off he bolted out the front door and headed to the car. He made it to the grass….puke. Then to the back of the car…more puke….the whole time I’m trying to talk him through it, telling him he’s ok….then I opened my car door only to close it just in time for…more puke all over the side of my car. Now he’s crying. He walked back to the grass and throws up one last time…just as two nice older ladies were enjoying a nice evening stroll. ๐Ÿคฆ๐Ÿปโ€โ™€๏ธ He’s crying, I’m standing there not knowing where to start and James is gagging.

By the grace of God Kyle stood up by himself (Cuz there was no way james could help get him up and not throw up himself at this point) and walked in crying. Up to the bath he went. At this point we all felt defeated, Kyle included.

Why did he throw up? I’m guessing the sensory overload was way too much? Going forward I know that we will probably have to desensitize him to the shaving process. Break it up into steps…everyday add a little bit more until we can shave his entire face in one sitting. Always a process.

It’s crazy that this is my life. It’s crazy that this happened. Cody and James hosed the puke fest off, and then life just…went on. No one blinks an eye. This is our life. Just another day in the life.

I don’t even know how to end this post. Other than….This sucks. And why does he have to grow into a man? It’s not fair for him, or me. I wish that things weren’t as hard for him…or me! But at least he will look great for prom! ๐Ÿ˜‰