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My Paradise in a Bubble: It's either laughing or crying some days!

Friday, July 15, 2016

It's either laughing or crying some days!

Ever have a day or a few days where you just feel like you are simply messing up your children?

That the decisions that you and your spouse have made, no matter what the circumstances
is basically ruining your kids?

I do

And it must be the heat, or the super busy week that has thrown my boy off a bit, or summer vacation and all I hear about are these wonderful vacations that every one else is on with their families.

I have thoughts of just simply taking my youngest and Ty out to lunch- to say "hey we got through this week- yay!"

But in reality I can't. And if I do, the invitation alone can raise his anxiety so high that behaviors occur because of all the "what ifs" and need to control the entire situation and if Sarah even dares to speak her opinion to him, he'll lash out like a tiger at her.

The reminders of what a simple 1/4 mile car ride is like with him and her in the car. She is not allowed to speak- yet he asks her questions and then yells at her for talking. He had made so many improvements during the school year- the routine of getting in the car, waiting a few minutes to pick her up, and then driving home. But he is unable to tolerate any other noises, distractions, despite him wearing headphones, and us doing everything we can in this 1/4 mile drive home. This is why we take 2 cars now when we go to the beach- the only place we can go.

But it's summer vacation. So many amazing pictures from others that have traveled, explored, given their kids amazing experiences.

And I'm exhausted beyond exhausted after this week of my husband having 2 late night meetings this week, Sarah having soccer camp (which is good, but the routine change is hard for Ty, therefore, hard for the rest of us), and Ty knows Daddy's birthday is coming up on Monday. Another very exciting, but also very overwhelming day that makes it hard to enjoy the celebration.

I hate that I feel this way. I hate that I feel like I"m ruining my kids. My oldest is going into High School.... 3 more years she is off to College. What will it be like when she thinks back to her "childhood"? Happy times? The love we have for her- knowing we as her parents have tried our best under the circumstances and that our reality is not like any others? We may be able to say- Ty struggles greatly to leave the house- which is true, and struggles greatly can be an understatement when he puts himself or others in danger. But does anyone really get this?

My paradise in a bubble was what I always said to help describe what the experiences are like for us. Because just like years ago, when he was little, when we went no where, saw no one, things were the same, no changes, no unexpected anything... life was quiet, predictable, and routine- Our boy was happy!

And here we are 12 years later- still struggling with the same thing. Sure, some days are better. The dog has helped when we do need to go (because for several years, he simply would not go!!!) He is motivated by french fries. So the most basic thing- like picking up his sister only 1/4 mile away turns into a french fry trip... so always extended car trip- always! I am thankful he is motivated. But sometimes, ugh you know it's not good when you are on a first name basis with the local Jack in the Box, Carl's Jr., Burger king... and yes, he definitely has an opinion on which one to go to.

But my youngest is going into 4th grade. Before I know it she'll be the one in highschool. Are we doing the best we can for Ty? Why does it seem like everything is so hard all the time- for him, for us? What the hell are we missing- to help him?????

And in the mean time, are we ruining our kids? Especially the girls? The struggles they are witness to, encounter, and see what their parents deal with (and don't always deal with well- because let's face it- my 14 year old had to point out to me that mom and dad are tired and our patience is zapped) and she's totally right... but what is all of this doing to them? Will they struggle with relationships in their future because they are part of a family dynamic with a severe special needs child that we are completely dysfunctional? (Of course we are dysfunctional- we can't leave the house- ever as a family!!!)

Ugh... my blog is the place where I can vent- put my emotion out there.. .because I know everyone around me is tired of hearing our same old story! The situation is no different. As they say, same shit, different day. And I don't know why some days I am so motivated to just make good memories- no matter what that looks like- but today, at the end of this week..... I"m so flippin' tired! And I hate that. I need to be the strong one. I need to keep things in check for everyone else. I need to be the example that we will continue to make the most of what life throws at us. No matter what!

I don't know- I guess it's just a day. A week really. Summer will be over before I know it. And I'll have regrets of what "we didn't do"- and it was just another summer of our "usual" and that's all we could do. I am thankful it is so far nothing like last summer during our crisis. But seriously- that's the bar to measure our world to? At least we are not in a crisis? I just want to go out to a nice chill dinner with my family. Or lunch, Or just simply go to the park? And we cannot do that? We could try- but trust me- the fall out behavior is not worth it any more. It's beyond risky- and that's not fair to any of the kids. Including Ty. The behavior we see from when "we go out" is one that he has absolutely no control over. Like he wouldn't want to go out to dinner? Of course he would..... weird thing is he NEVER EVER asks... if we even present an idea like that- he changes. It becomes greater than what he can handle and manage. Behaviors become instinctual and survival for him... nothing else..

I hope today goes better than the past few days. I"m talking the smallest of "better".... it's so hard to know how much he can tolerate. This week- not much- so he is happiest laying on the couch, in his spot- with the TV and headphones. That's all he can tolerate. And this week, engagement was kept to a minimum. And he certainly wasn't tolerating the girls. And he barely could tolerate me.... but I know when to walk away.

I get back to my original question. Are we ruining our kids? What other choices do we have? We are doing the best we can- but is it enough? Enough to have the girls lead independent happy lives that they feel are fulfilled and productive? What about Ty? Will he ever be able to be independent? Have a job? Go to school? Enjoy what part of life he is able to, no matter what that looks like? And don't get me even thinking about myself and hubby! Not today- I'm just too tired. And that is an entirely different subject that is hard when you parent a severely special needs child, have lawyers because you get kicked out of school, can't leave the house, can't go out or even have regular adult conversations, are consumed by the everyday things that are required when you have kids, but even lately stealing the moments like we were so good at for so long- seems more difficult. I miss even the tiniest of moments we would share.

Well, thanks for the therapy session. Because Lord knows I can't leave the house to actually go to therapy these days! Ha LOL This is me trying to put back my joking and laughing at our situation side. Because it's either laughing or crying some
days.

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