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.

Her worries are important

My blog description is " A look into a special needs mom's everyday life of raising 3 kids- when one of them won't (can't) leave the house. "

But it is definitely days like today that I realize how hard it can be - my everyday life, trying to raise 3 kids- when one is now 12, taller than me and for 98% of the time, still can't leave the house.

Little one is off to her very first soccer camp. It's very exciting. But her needs tend to get overlooked sometimes- just because that is how life is around here.

Turns out, she had quite a bit of anxiety about going to camp. I'm not sure why I"m surprised. I should have anticipated it and prepared her better. I tend to forget about how sensitive she can be, especially to new things, changes, exciting events. She is definitely MY child (she's a lot like me when I was little).

Instead, she and I were up to 1am while she cried with worries. It's just how it is sometimes. And to say her "worries" are not important and are less isn't fair to her. But sometimes, I'm afraid because she is so much more flexible, so much more independent, so much more capable (most of the time)

that when she struggles, sometimes it takes a bigger "moment" for me to realize it. Like last night her in tears, full of worries, tired, and not knowing how to deal with it all.

But eventually her worries were pushed to the side so that she could get some much needed sleep. And she woke up ready to go (well, for the most part- she is not a morning child).

I'm so proud of her. I hope she is having a great time and creating wonderful moments of her own. And fingers crossed her brother handles the change in routine as well, when it's time for me to pick her up. It's been a long time since we had a "pick up routine". Praying french fries are still a motivator for him. Otherwise, I might be screwed!!!

This is how it goes post 4th of July.....

This kid cracks me up...it's like almost 100 degrees out....

This was a memory from my FB feed. I almost have forgotten about Ty's crazy and yet so necessary sleep situations. Since starting Cannabis, he has no longer napped. Not even once. Hmm, is he maybe getting better quality sleep at night, maybe not having "nocturnal seizures" because we now can notice his body not having any convulsions during his sleep? My opinion- yes!

But it also reminds me how much he needed (even though he never knew it) major down time, sleep. His body would just crash- anywhere. Whether it was the sidewalk, upside on a couch, a bench in the backyard. When sleep over took his body- that was it. I have never understood it- but it is what it is.

With 4th of July behind us, and it was quite successful which I"m so thankful for; but I am reminded once again of what events like this do to Ty and his body.

Since the 4th of July, he has layed on the couch for pretty much the last 48 hours- watching a show, not getting up except to pee. That's it. Nothing else. And for a boy who is so active, playing basketball, swimming, this is all he can do after such a big event.

So on the couch he is, and when he did try to engage even with me.... forget it! He couldn't... and luckily I would manage to get him to go back to the couch. He couldn't handle anything outside of the couch and TV.

So after this 48 hours, yesterday he slowly pulled himself off the couch, onto the floor and began playing lego's!! Now that was awesome to see!!!!

This is what his world is like- his central nervous system cannot tolerate much at all, still. It's about how he handles it however.

Fun event, next 2 days basically in a couch/TV coma- and cannot interact with the world or people (even mom and dad), and then slowly wakes up a bit and plays quietly, calmly, and can tolerate a bit more interaction. He and Sarah swam in the pool- successfully!

In our world, a big event (which to most everyone else is no big deal) is so huge, that it truly wipes him out for days after. We used to experience easily a week of this coma type behavior. And this is why I know we don't ever plan anything else around these times. Not that we do anything anyways, but we know the 4th is big...... we have not even left the house for a french fry run. Nothing!

This is just how it is. And it gets back to reminding me why he can't attend so many things, why he can't attend school, why the world outside of our home is so overwhelming to his system. It always has been. I'm just glad the cannabis is helping him so he doesn't rage and become too physically aggressive where we can't handle it- like last summer.

If all he can do is lay on the couch for several days at a time, especially after a big event..... that's how it will be. And it's not up to us to understand it- we will never understand what goes on inside his sweet mind and body. But it is up to us to appreciate it and support him as necessary!

And this is why you cannot FORCE him to do something..... there is a reason he is not able to handle some things...... he can't communicate it through words... but only by his actions. His actions right now are - to chill, decompress, and when he is ready- he let's us know. This is not new- this is how it has always been. But when we appreciate it and follow his lead on these types of things.... well, things are just better. Even if we don't get it!

My boy is happier and that is what matters most!

Remember when......... not really!

I belong to a great FB group- and one person challenged everyone to post a picture of "their former selves".... meaning- so many of us have lost who "we are" along this really tough journey of special needs parenting, especially extreme Autism, severe Autism, whatever you want to call it. It's certainly more than "neurodiversity".....

Our everyday life is difficult. We don't get "breaks". Even the most basic of things are possibly triggers for aggressive behavior for our son.

So it was a neat idea to think about who I was "before"... before being consumed by this crazy autism world and medical world we now exist in.

I've learned so much about my self- things I would have never known if our situation was different. This is my trying to always find a silver lining among this chaos. The only really hard part is knowing how much my son suffers. There is no silver lining knowing this. But stealing happy moments from the bad one's is always my mission. And I think we do a pretty darn good job at it.

Anyway- This is what I posted on that site. Thought I would share here... it was nice to remember back when! It's just been so long that I"ve even been allowed to have my own thoughts. It's just how things are. And unless you live this - you can never understand it. I truly would never wish this on my worst enemy. It's the most cruel and unfair world- to see your child experience so much pain and anguish from the most simple of things...... eating, sleeping, enjoying nature... everything bothers him. Always has. And when you cannot communicate when things "bother you" or even cause pain... what do you do? One would try really hard to communicate somehow, someway... no matter what that looks like. Including hitting the people you love, or yourself, or just running away from it all.

So - here is circa 1985. Denmark. My soccer team just one this huge international soccer tournament. We were the first American team to win it EVER! It was a pretty big deal.

from FB post:

" love all of these... I don't have much on the computer to upload- but found this one- I was only 15-(same age as my oldest) traveled to Europe with my soccer team (not my parents).... for almost 6 weeks- traveling around playing soccer- and we won a huge international soccer tourney... sports were my life and my husband and I were so active...biking, hiking, river rafting, exploring- now we can't even leave the house at the same time. Not where I thought we would be... coming up on our 18th anniversary next month-- we are certainly doing the best we can- we still like to dream about "one day"...... keeps us going"

Here is a picture on our Wedding Day... coming up on 18 years in August. We've been together for 21 years now- right from college... we jumped right into "the real world".... it's just how we both are. But we always put adventure in everything we did. Including going camping for our Honeymoon! It was always a fun twisted path we chose to take..... maybe it helped us for the adventures waiting to happen? Maybe? Or in reality nothing can prepare one for what we experience every day. But we enjoy our moments. It's sometimes all we have. I guess in reality- it's all every body has. We just choose to really emphasize the moments. For the sake of our girls and for Ty...... moments are what they will hopefully remember! (with happy memories)....

Picture order: Wedding Day 1998, Monterey, CA 1996, Bodega Bay 2015, Tahoe, New Years 1999