Is it my stresses?

I just don't know what to think right now! 

Do I have super low patience setting him off?

Is he just so dysregulated that simple things are making him explode?

He is on a very emotional up and down mood these days.  One minute quietly reading a book in the corner wrapped up in a blanket.  And yes it is really awesome to see this.  But as quick as a flash, some crazy idea disrupts him and next thing I know water is being poured all of the floor and he's yelling.

I never knew what that was about.  Luckily my ignoring him and his act of throwing water everywhere was effective today.  I never said a thing about it- just continued on like it never happened.  Except I did ignore him and any requests he had.  Because clearly engaging in a conversation will likely end up with another behavior.  So I decided to make little one a new bed.

I was successful making her bed using wood from an old Ikea bunk bed that I had saved (see, you just never know when I might have some brilliant plan and need wood that I can just reuse, like from an old Ikea bunk bed.... it was perfect.... made an entire new twin bed with not buying one thing).

But back to Ty, and his quick to erupt emotions.  Hoping today is a better day.  Funny thing he had a pretty good evening last night.  He was watching the debates!!  Yes, the presidential Trump V Clinton debates.  And he had opinions.  It was quite funny, and adorable to hear him try to make sense of what was being said.  But for the most part he has heard many things probably from us and some shows on TV, ESPN, commentary's, news..... and repeated many of the pro-Hillary statements regarding Trump and the craziness that he has brought to the Presidential Race of 2016.  He definitely talks as if he's an authority on the subject.  That's my boy.  He knows and don't question him. 

Ahh.... my mind is all over the place.  Probably not helpful to him.  I get that, but we have a pretty big day tomorrow.  Can't talk details... will post when I am able to... but I am nervous and he will be in the care of my best friend for most of the day.  It will be fine I'm sure.... I'm more worried about Thursday and Friday.... the aftermath as we call it.  So, maybe he is just being super sensitive to me and my own stresses.  But I just want to get him back to a more predictable, stable, calmer state where he is happy, smiling, and we can see even a bit of his personality, of my fun loving silly boy.  I miss that!  

Back to the bubble we go!

OKAY OKAY!!!! I get it... I really do! I know things have been busy. I know we have possibly put to many challenges in front of you. I guess one too many! This is exactly why this blog is called "Paradise in a bubble". Because for Ty- if we don't go anywhere, do anything, see anyone, keep his world closed up and air tight... he doesn't struggle. He exists and laughs. He is calm and engaging. This we have known since he was so small.

And now, clearly this week has been a breaking point for him. His ability to cope has left his being. I have known these last few weeks were going to be tough. So many new things with school starting for the girls. Back to school nights, soccer, other important meetings and events. And yesterday I heard him loud and clear.

It's too much. It's all too much. Of course not with words. That is where he struggles most. Being able to use language to convey and have meaning so others can understand. Nope, especially at this point.

It all became too much for him yesterday. Picking up sister from school, and we made a plan to get him french fries on our way to go pick up sister's cello from another school in town. He would stay in the car with Gretchen and eat his french fries, while I went and got it. This was the plan. He agreed to this plan. But sometimes or really a lot of the time, things do not go according to plan. I don't really know where things went wrong. If he didn't really understand this order of events, or he changed his mind. I have no idea. He doesn't say anything..... he probably didn't even know. But his frustration, sensory input, EVERYTHING got the best of him and he lashed out. While we were in the car. He has not done that in so long, I can't even remember the last time. My heart was breaking for him. He couldn't cope. He couldn't find a way to handle this frustration he was clearly experiencing. And my right arm was his target.

Pinches, scratches, nails dug deep into my skin. So deep it created welts up and down my arm. This is the autism that I hate. This is not a gift. My boy struggles so much to be in the outside environment. And we don't even hardly do anything. We pick up little sister from school(and yes we were going up to her classroom as with the start of the new school year, she has her own anxiety and fears). And then 2x a week we go to soccer, he is there with me for 15 minutes before dad comes and picks him up and he is then again rewarded with french fries (what is it with kids, Autism and french fries... this seriously needs to be researched ;) ) and then he and dad go home to carry on the routine of the late afternoon. This is it. This is what is creating this challenging environment that he is unable to cope with . We aren't going to the mall or any stores for that matter. We are not going to parties, to events of any kind, out in public even. I just wanted to pick up little one from school and be able to two times a week take her to soccer practice without Ty having too many issues. But after yesterday, and really the last few days leading up to yesterday, he has clearly spoken. Not with words. He doesn't even know this happens to him. He goes from 0 to 60 so fast it's as if it startles him. It's the last straw that breaks the camels back- and he just flips.... there is no conscience thought here. To him he jumps straight to fight or flight response. No thought, no rational thinking... pure survival.

My poor boy is suffering. I feel awful that I put him in this prolonged situation to the point he couldn't handle it and he hurt me. He doesn't ever want to hurt me. I truly believe that. But when your body goes straight into surivival mode because everything outside your own body feels like it is assulting you, one reacts with pure instinctual survival. His body is under attack and he has to fight or get out of there. Yesterday instead of running away and putting himself in danger, he fought. He fought me.

So we need to zip up this bubble. He needs a break from all things. Problem is, it feels so difficult to do. I have to get sister from school. She has practice (and yes this is the struggle of having one that struggles so much to leave our home and yet still have 2 girls that need to be out in the world. Experiencing playing soccer, making friends, enjoying school, free time activities... everything. And today I sit here, wondering how I'm going to do this. Meet Ty where he is, help settle his nervous system to a place where he can breathe and exist all the while meeting the girls needs, and supporting them and giving them opportunities to grow and enjoy things that life has to offer. It just feels impossible today.

But I really have no options or choices. Not when he isn't being safe in the car and hurting me. I have to listen. I have to change things. We have to change things. We have to get back on track and that clearly means taking several steps backwards. But it is what it is. It sucks. But this is how things are. My boy is struggling, we need to listen and support him. No matter what that looks like. No matter how "inconvenient", no matter anything.

I just wanted it to be a teeny tiny bit simpler today.......

You know you are in a grumpy mood when things really aren't THAT bad of a day; but he won't stop talking, he won't stop "needing" something at every moment, he won't just relax, and you are being followed wherever you go!   So TIRING!

Not that he's been in that great of a mood himself.   Clearly he has some increased anxiety happening.  He's definitely struggling to engage.  But needs attention.  Not an easy combination.  And it's driving me crazy!!!

We had a tiny little, pretty much not really anything, outing today.  He asked about doing school work for french fries.  I thought I would use this situation to my advantage the best I can and in stead of doing school work (since I have nothing prepped right now) he could get french fries while we got Starbucks which is next door.  But that is technically a second stop.  That's 2 difference places, 2 different events, 2 different everything which is a big deal.

He agreed.  And it was the most frustrating afternoon once we established this was going to occur.  His anxiety went even higher, he was short with his patience, he definitely had cross words (clearly expressing anxiety).  It was really hard to watch, and it really gave me the indication that we shouldn't do this outing.  It's increased his anxiety and we haven't even left the house.  But once committed to the plan- there is no going back unless I"m totally prepared to deal with something that I really was not totally prepared to deal with.   Not that that stops me, but many times once we are out of the house- done with all the pre car anxiety, and actually driving- (he either plays with DS or listens to his own music on his MP3 player) and things calm down. 
But my goodness, it shouldn't be so damn stressful just to go get french fries and starbucks.  It shouldn't be so damn stressful to just walk out the front door and simply get in the car.  UGH...

See this is how I know I"m in a grumpy mood.      Because of course I know it's very hard.  Of course I recognize the challenge that this simple act does to him.  Of course I realize I am doing exactly what causes his anxiety to be worse.  And it is the first time really in quite sometime this summer that we have been out in the car (especially because little sister came with us). 

When we were picking up little sister from school everyday and going to Guitar lessons once a week- it had dramatically improved.  Simple, short, routine established (which this is very very critical in this game of life with Autism), and with the proper supports, the routine much more established, expected, and predictable- he did great this past school year.

So I know I need to be way more patient with him.  I know it was a hugely big deal that we did this.  I know it was hard for him.  And I know my grumpiness only makes things worse for him.  But my goodness, some days I don't want it to be a circus act of chaos just to go out of the house.  Our everyday is already so hard and this makes things even harder!  It's just never easy or simple- and today I wanted it to be just a teeny tiny bit simpler!   Just once!   Is that too much to ask?????  lol  I guess it is!  :)

Five minutes of being a family!

He did it.  He got through, we got through the week of basketball camp.  Successfully!
He was exhausted by the end.  He did struggle.  But no major behaviors, no hitting, no throwing, no property destruction, no running away. 
He expressed some verbal aggression, and as much as that sucks and it's frustrating- he never escalated it!   I'm still amazed.  I"m so proud. 
It definitely helped that the house was pretty quiet most of the weekend.  Big sister was very busy with the opening weekend of the musical theater she is in.  Plus little one and I went to see and I had to work one of the shows.   Keeping home environment as calm and people free helps a lot!
And now here we are, August 1.  Girls start school at the end of the month.  Ty, I have no idea where things will fall with the current situation we are in legally.  (can't say more right now- other than he was kicked out of the independent/homeschool charter school program we were in and doing so well last school year).... so I have no idea what will play out for his schooling.  Beyond frustrating- it is always good to have our plan when starting- it allows me to prepare him.
But August 1-  summer moving as swiftly as ever.  This is typically the month that things settle, things finally feel like they are in a solid groove, Ty thrives more at this point of summer break.  It's always been this way since I can remember.  Even before he was Dx with Autism.  It just was a smoother month than others.  And then BAM
School starts up again, things get more hectic, and our very short lived peaceful time (peaceful for us anyway) is over.  I have never really looked forward to school starting back up- seems to be the only month, August, that has brought some happy times for our family.  (Typically anyway) It's a weird thing..... it's tough when so many others, naturally our out exploring during these vacation days.  Sightseeing, exploring, traveling, even just staying up late, watching movies, hanging out with friends, simply allowing summer break to be a calm and peaceful and fun time. 
For our family, it's anything but.  Oh believe me, I have had my own ideas of what would be fun.  I simply was hoping to be able to go the local u pick farm and pick blackberries.  Never really felt there was a time he could handle it.  I was also hoping to just  drive to the farm and buy some melons- that would be considered an outing.  But again, definitely not as a family, definitely not with big sister, and really I have to weigh the pros and cons of him getting in the car, with little sister and mom, driving more than a mile.  These types of events usually bring on severe anxiety, behavioral issues, and riding in the car with his sister is anything but easy.  Serious rules to avoid outbursts.  It got much better this past school year.  But it's a very short distance coming home.  No talking, period.  He typically starts demanding something, like french fries, starbucks just because.  Even when that was "not part of our plan" which I so clearly laid out from the beginning.  We would go from point a to point b and then home.  My expectations are always clearly communicated of what I expect in the car.  (and yes this has to occur every time we get in the car- otherwise, oh boy.... )
Anyway- just simple things can be a nice change of pace.  Like last night- we had almost 5 minutes of the 5 of us sitting in backyard, kind of chatting, just co existing.  It was nice- for most this moment would just be not even worth a mentioning.  To me, I enjoyed it more than anyone could every know.  It was 5 minutes where our family was able to be more like a family.  Even a few giggles.  (a rare photo of the 5 of us 3 years ago, I think)

That is definitely a highlight summer moment for me.  But it doesn't mean I don't get sad over the fact that only 5 minutes is all my family can handle to be together.  (it's just too overwhelming for Ty to be around everyone, especially when we are talking, engaging, and in the same space).  But the dogs helped bring us together, once again, in this moment and we had a moment.  Free of Autism, cecosotmy's, medicines, behaviors.  We had just 5 minutes of what felt like joyfulness! 
I don't want school to begin.  I don't want summer to end.  I want a few more chances to have a few more moments like we had last night. 

On day 3 of camp, I still have a windshield!

My boy is on day 3 of basketball camp put on by our city. Day 3 of being out in the world. Day 3 of being around 60 other boys who are same age peers. Day 3 of a very extreme overstimulating sensory activity. Day 3 of doing what he loves most in this world- playing basketball.

And he's doing it. It's not easy for him by any means. In fact you can see how difficult it is for him. What when it is a highly motivating activity- he will put everything he has into doing it. That's why when he comes home after 3 hours of camp- he just lies down on the couch, headphones on, under a blanket and watches a show. That's all he can do. But the fact that this is what he does do- is awesome! We certainly know the alternative! NOT FUN!

After only 1 day of camp (grant it it was a different camp- but still it was basketball but that time he just couldn't deal even a little bit) and we could barely get to the car without him having major behaviors, and as I barely pulled the car out of the parking lot- he was threatening to jump out of the moving car, so I pulled the car over- and then in his melting down rage- not even realizing his own strength and power

CRACK- he kicked in with his barefoot the car windshield.

I was absolutely horrified. This was only 1 day of basketball camp. That was supposed to be fun. It's the game he loves so much. But too many things stood in his ability to deal with the overwhelming sensory input. Too many things happened in the 2 1/2 hour camp that he just couldn't process and handle.

And all that energy, all that lack of understanding, processing, overwhelming sensation of life got released by kicking the windshield so hard it broke.

Worst part is, we chose to put him in this situation. We signed him up. We thought it would be fun for him. We thought it would be a positive experience as the camp (a different camp) was the summer before. We thought we had done a fun thing for him. We thought he could handle it. We thought ........

I can go on and on and on. We put him there- and he couldn't handle any part of it. Not one bit for one moment. This was the worst feeling as a parent - what could we have done differently. We are pretty great at understanding him, his signals, supporting him- knowing when to challenge, nudge a bit- knowing when to back off.

So when this summer opportunity came up again for him to participate in the city basketball camp, I was scared as hell to even THINK about signing him up. After last summer, a summer of crisis, a summer of so much going so wrong for so long.... I'm just too scared many times to even attempt things knowing how bad it can possibly get- in the blink of an eye.

But I signed him up anyway! He is in a different place than he was last summer. Medical marijuana has most definitely been the single most contributing factor in this positive turn around from last summer. What is the worst that can happen? Okay I know- but I guess if we try it and all hell breaks loose- we kind of know what to do now?? Of course I don't EVER want to go back into a situation like last summer EVER.... but he's bigger, stronger, going through puberty, still has no ability to communicate in a meaningful way to others- it's bound to happen again at some point. This is Autism and mental health and medical issues..... it just is.

So on day 3 now of the camp. I still have a windshield- yay! I have to use humor to hide my real deep down anxiety of WHAT IFs and WHAT to do.... when you have a wonderful child who is so full of life but struggles SO MUCH with EVERYTHING and in the drop of a hat turn negative, aggressive and even physical- humor is my only path to keep the tears from flowing.

I have no idea what this day will bring once I pick him up in 2 hours from camp. I have no idea what his NEEDS will be. I do dose him with THC (3 drops- that's it!! it's such the tiniest yet most effective amount)- and I think it helps bring him some calmness. Trust me- it's not an easy day after camp. It's just so far not drop down physically chaotic full of threats, things thrown or him running away.

But he most certainly does need it to be quiet, calm, predictable, and be allowed to just lay on the couch watching a show in his "way" and not have anyone disturb this environment. He is like a hibernating bear. But I am so incredibly proud of him. And I know I tell myself "sometimes we have to just try something" , but it doesn't mean it's not scary as hell- that my level of anxiety isn't off the charts because I understand what the consequences of "let's just try it" can mean. It can mean a whole spectrum of things- but it can certainly end very badly for all involved. And as his parent- I never want to put him in a situation that even if he can't handle it, I am not able to help him through it more importantly.

So I am home with my 2 girls - just the 3 of us- which is weird because it NEVER occurs- but I can't help but have this pit in my stomach wondering what the afternoon will bring? Because one thing I know for sure- we just never know .....

right there with him

my boy woke up surprisingly happy

he didn't do his "usual routine" which is a pretty set in stone rigid routine..... but chose to engage with me

And he was back to some scripts..... we talked dog
s- and he has a very particular script that if we stick to- he's pretty happy, smiley, and engaging

Then he asked me to make pancakes. okay-
and even better, no behaviors and I was able to make pancakes

Then (yes it continues..... this is a lot of time he is continuing to be happy :)) while we ate pancakes I made, we watched a movie together - hmmm not a routine morning by any account

But it was certainly a nice change of pace compared to how things have been lately....... when he is happy and smiling, and also wanting engagement that just means his brain is calm enough for him to be present and in the moment- and I was right there with him

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.