doggie halloween costumes are the best!

We had quite a nice evening last night. As a family. Something definitely more than rare these days. It's just something my boy isn't able to handle most of the time.

It started with a good day for him. Lots of dog scripting. He wanted to play a game with me... third day in a row!!! And this time he agreed to play a game I recommended, Sequence. We spent probably an hour and a half yesterday playing sequence and then checkers. It was pretty amazing.
Then we had doggy dress up time. Because when it's Halloween, of course the dogs get costumes too.
 
This was all wonderful. This definitely filled my soul with happiness. But what was even better than all of this.......
we all sat in one room, together, to watch a new show on TV called Speechless. And we all laughed. We all enjoyed it. We had 30 minutes of family time, together. That was pretty incredible. It feels like it's been a very long time since we've been able to do this. And we did it last night. And best of all, there wasn't any problems.

 He didn't get overwhelmed. He didn't get angry just from the fact that we were all in the same room breathing the same air. There was nothing except laughter and smiles.
And if you know anything about this new show, it's about a Special Needs family (ironic isn't it).... the boy has CP and is in a wheelchair.... and it's centered around all the craziness that comes when you have a child with special needs. And it is written in such a humorous way. It's real, it's raw and let me tell you how much I can relate to it. It is so well written and so incredibly funny. And laughing is good! And that is what we were all doing last night! It was beautiful.

502 pages

502 pages!

That's how many pages in the book that my boy finished yesterday.

Yes, I said yesterday!

This kid just is always keeping us guessing, keeping us on our toes at all times, constantly surprising us and amazing us. 

502 pages kept him so focused, engaged, and literally transcended him into another world inside that book.  Not much can do that..... that is pretty powerful!

And this is all from a boy who never demonstrated to ANYONE that he even understood the most basic of words, the beginning of understanding written language, of even having an interest.

But unlike most kids, my kid didn't ask for him with a word like; to, or, maybe, sit, eat, or any other word that is considered beginner reading.  My kid liked books, especially encyclopedia type books with great pictures.  But one day when he was about 7, again he had never made an attempt to show us he knew how to read anything and refused to ever demonstrate this skill to us or anyone, and what does he do one day?

He asks for help with the word "experience"..... huh???  and from that point on we realized he knew how to read.  He taught himself, it clicked just one day, we always kept books everywhere.  So this is my kid.... his favorite books were always non fiction.  He loved dictionary's, encyclopedia's, nat geo books on animals, space.  He loves reading maps, books on geography, anything to do with FACTS!!!  That's what has been his reading material- the type of book that would actually keep him engaged, keep his attention and focus and of course it gave him material.  Material to then tell others all about these facts that he has now learned.  It's part of his scripts!!! 
But it's changed recently.  Slowly it started with a "How to Train your Dragon" chapter book.  That kept him pretty engaged. 

And slowly over the last year, he has read a little more like this.... not just a book of FACTS!

Then this week comes.... and he's been reading the last month like a crazy maniac.  It's great- he sits in a chair, puts a blanket on his lap, dogs at his feet and reads.  And reads, and reads!!!  
I'm trying to keep up with him and his interest and picking books that will keep him focused and he is interested in.  What can be hard is he literally judges a book by it's cover.  If the picture on the front doesn't spark him immediately- forget it!   But I have found this series, actually several series by author Brandon Mull........and well it has sparked him.  He read the first in the series, Five Kingdoms end of last week, and then he read book 2 and 3 this week.  And yesterday he read book 4 in the series.  All 502 pages of it!! In one day!  This kid just is always full of surprises!!   But it gives me so much joy as his mom to see him enjoying something.  So little in life brings him joy, and to see him calm, engaged, focused, and completely engulfed into the world inside those pages......well, it. gives makes my heart smile really big!   Now, to just find another series that will capture him.  (book 4 was the last in the series for now..... ) 

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 .....