It's time, again!!!!

well, tomorrow is hospital day for Ty

and good thing, between his complete lack of energy, really poor appetite and then during today's flush he screamed for me to get him a throw up bucket- he thought he was going to throw up..

he kind of did, more gagging.. but when you add 500ml of liquid into an already full colon- it has no where to go

if it doesn't come out one end, it will come out the other

and that sucks.. and it tells me good timing that he will be getting cleaned out tomorrow

and he'll feel so much better once this is done!

We will be there bright and early 6:00am - first surgery of the morning, and that hopefully means we'll also be home earlier in the day!

I know it's not gonna be easy-

I know the minute he sees we are all up so early in the morning- he knows it only means one thing (well he always thinks this, but he'll actually be right tomorrow!)

I wish there was something anything to take his anxiety and fears away- but there really isn't... we just have to do it, get it over with - and enjoy the time until the next time!

So, prayers for my little boy accepted- positive energy to help him get through this challenge that he will face tomorrow morning

and I hope we can keep him as calm as possible from beginning to end!

So, here we go again- but luckily I have my husband right by my side this time-

In January, Brian was also in the hospital donating a kidney- and I was downstairs at Peds surgery with Ty... and then going up to visit Brian while Ty was in surgery.. then... well, couldn't have been a more difficult scary and overwhelming day for all of us!

And tomorrow we'll get to put our energy into Ty and help him feel as good as new! With each others support...

You don't even realize how important that extra support is, the shoulder to lean on, the person to just gaze into each others eyes with.... it helps alot! And I"m glad he'll be there tomorrow with me and Ty!

One person......

I got a call today... a call I didn't anticipate

I call that took my off guard

A call that quite honestly made me so angry and cast another shadow on the way our society lacks compassion, lacks good judgement, and absolutely just is wrong.

And I hate when only one person can make it feel like the entire world is against you

I hate that I get mad and let this one person affect me and takes away my faith in humanity

That people do want to do good, people do have compassion, and people do not judge

But once again, a simple phone call took this away at least momentarily for me

and quite honestly crushed me, crushed me on a day that was FINALLY going a little bit better than the day before...

and made it a little more difficult to smile

When as a society will we wake up, accept difference, accept others choices, accept and for goodness sake show compassion!

When as a society will we put judgment to the side, and maybe even offer a smile or a simple hello rather than "complaint"

When will we wake up and see that these little children who struggle so much, will grow up, become older kids that now society expects them to "behave",

When will society either show compassion, or just leave it alone

Does this one person know what a horrible day they have created for me

do they even understand what they were seeing or did they absolutely place a judgement that a standard in this person's opinion wasn't met therefore I"m at fault?

My cute little boy, has become a cute 10 year old, and will continue to grow up, despite the lack of development that is expected of him

he will continue to grow bigger, stronger, and maybe still lack so many skills that will make everyday a challenge, as it is right now for him

And this one person, who rather than joining me in celebrating a huge accomplishment that he experienced, judgement was passed. Criticism and lack of compassion had no place in that moment

but yet one person was ignorant enough to not even ask a question to maybe get clarification...

wondering what this is all about..

Background, years ago Ty learned how to utilize our dogs to help him,help him regulate, help him calm down, help him learn a new skill..... just help him!

This is why Gretchen is such an incredible gift for him and our family!

A long time ago, when Ty was going to Occupational Therapy, he wanted to bring Oliver- which was wonderful, he acted as a transition item leaving our home and comfort in the car (even though he barfed)

and provided a natural bridge between him and the OT as dogs do in many situations for him!

Ty would take washable markers or paint or chalk and interact with Oliver by coloring on him, or writing something on him... now Oliver is an awesome dog- he loved this attention and totally loved being with Ty.

Of course Ty has tried it with Sadie, but she doesn't want anything to do with it.

This is a great coping skill he has learned to either interact with others using the dog as a bridge, or simply a calming tool to effectively and appropriately cope with a situation

it helps him with fine motor skills, it helps him with writing, it helps him strengthen his hand and muscles

where do I stop in the benefits of a dog and where do I stop in the benefits of a boy connecting with a dog in a manner that absolutely is mutual and beneficial!

I can't stop... it's never ending- it's incredible, it's the most beautiful relationship that he'll probably experience because dogs don't judge, dogs don't lie, dogs don't do anything but love you and are always there no matter what !

And so fast forward, Gretchen is in our family!

Gretchen is a wonderful amazing and loving dog towards Ty

They are bonding, they are learning each other, they are connecting like you wouldn't believe in such a short time

it is beautiful!

So Ty had to have an xray- that doesn't necessarily mean he'll go.. trust me- it had been over 2 years!!!!

But life with Gretchen has changed some things for him and for our family....and he wanted to have the xray done!

Monday morning, he tells me he wants to go at 10:00am to get the xray.... wow talk about taking control over the situation and accepting and dealing with it!

So absolutely I take him to get his xray... a place he has been to so many times we can't even count- it's downstairs from the doctor's office, it's not a real busy office, it's a place he knows since he was 2

We wait in the waiting room for maybe 3 minutes... not even enough time for him to turn on his DS player!

We go back to get the xray.... he does an amazing job... it's no big deal, snap snap it's over- and we leave!

What an amazing experience, what an amazing job he did, what a difference having Gretchen makes! We go home, that is over!

End of story, right... (well except for getting the call from the doc that sure enough as we thought he is impacted and therefore we need to schedule a procedure for bowel disimpaction.. but that moment, was over, that experience was now in the past

so I thought!

The morning of the xray- when Ty came to me and said he wanted to go at 10:00am to get the xray- and I was elated with him taking charge like that

and knowing okay at 10:00am we'll get the xray- and so the morning went on

Ty had been watching ESPN, watching something about baseball, watching stuff on SF Giants

Yeah, go Giants... no big deal, he watches sports all the time- he gets an idea and

it's an idea that is not new, it's not inappropriate, it's simply a tool and way for him to "make sense" of what will be happening in a little bit- he knows he's getting the xray- so what does he do??

He writes Go Giants in purple washable marker on Gretchen.... she loved it... she loves the attention, she loves being with Ty and Ty loves interacting in so may ways with her! It's so mutual it's beautiful!

He drew a little flower on the top of her head and on the side of her body wrote Go Giants....

This is simply a huge regulating activity for him trying to be calm in a situation that he knows will cause him great stress at 10:00AM- getting the xray!

It's absolutely no big deal, if I was ever worried about it, or worried she didn't like it as our Sadie does, I wouldn't even have to tell him to stop, he intuitively knows the dog is not enjoying this moment, he will stop on his own.... he has a great respect for animals, and in particular dogs... dogs give great cues of yes or no... I like this or I don't... there really is no mixed signals the way there is with humans!

Again, that's why dogs rock for my kid.... he gets them!!!They get him.... it's amazing!

So 10:00am rolls around, we put her CCI vest on her... yes she still has color marker on her as this was a way he was regulating HIMSELF!!!

He gets in the car, we drive about 7 minutes away- we park, and go into the xray place... sit down for 3 minutes- we're already up- xray is done before we know it!

Mission completed, mission successful!

Then today, the phone call.. the phone call that somebody in those 3 minutes of being in the waiting room, while my son was going to be getting an XRAY- which is a big deal - and passes judgment, decides what THEY SEE is inappropriate- therefore they must act on that absolute ridiculous notion that some how this beautiful dog that is accompanying my beautiful son to his XRAY.. first time in years.... and calls CCI to complain that there was writing on the dog... now I don't have all the details.. that is true.. I have no idea what was said, what transpired from the conversation....

all I know I was called by a very special place that we feel absolute connected to for giving us this opportunity to help our son- and I was called, asked how Gretchen was doing and then BAM...

A person saw us a doctor's office last week and complained that the dog had writing on her......

yep, she had writing on her.. Ty was getting an xray- he did that to help him regulate and cope with the situation that was scary and something he had not been able to do in over 2 years... yep... that's what he did, that's what I allowed him to do....

and as amazing as CCI is, and they knew there is no negligent on our part- they understand both sides of the coin

it's their job to follow up on the complaint

and this is exactly why I had a complete loss in humanity that someone, a stranger, a person who didn't even approach us for any reason- to complain to me directly , to ask a question, to simply get the story because this person clearly has no idea what the hell my family goes through, what my son goes through every single day.. and how critical this dog was to him being successful in that moment this person decided to pass judgment and lack compassion.. when I was celebrating this moment of his success, someone a stranger rather than celebrating with me- was him/herself completely inappropriate and went so far as to call and complain about what THEY SAW.... end of story!

How sad is that.... how sad that people within our own community lack so much compassion that rather than asking about Gretchen, whose dog is she... even just exchanging a smile

decided to make my life more difficult because despite my husbands good advice about ignoring others- I care.. .I care ... not what others think. but I do care that I live in a society that just constantly bombards families like mine and makes our situation so much worse.. lacks compassion to understand our situation, offer support or help, or just a kind gesture of a smile...

I wish I could say this is the first time "something" like this has happened

but it's not... and it won't be the last time either!

We live in a society that constantly judges families like mine, when they don't understand what they see- a ten year old running across a parking lot, a mom being hit because her son with Autism is completely overwhelmed and doesn't know how to even use the language he has to say "help"

a kid who is so athletic and plays basketball all day long, but to the people passing by have no idea that he also has major OCD issues and ADHD and along with his mood disorder, anxiety disorder and Autism- can only focus on that one activity at that moment and if things are not "just so"... he will lash out, he will throw a ball at us, he will absolutely come storming into the house with rage if he hasn't gotten it out of his system before .....

never mind that it's dark outside, street lights are on, and he's still out there playing... we can't do anything in that moment to change it...

These are the very difficult days of parenting a child with special needs.. that person who complained has no idea that my son' was having a bowel xray to determine if he is impacted with stool therefore possibly needing to go to the hospital, under anesthesia to literally scoop all the stuck poop out....

This person doesn't even get that my son who is the proud recipient of Gretchen struggles morning noon and night- and the simplest of tasks like brushing his own teeth at the age of 10 is monumental!

So, this is where I get out my anger, this is my forum of being angry and upset that my children are growing up in such a world that lacks love compassion and understanding

and people think there are issues with us.????

Really- because my family is an amazing loving compassionate family that despite the struggles we endure, my children endure, the pains, the difficult days, the emotional roller coaster that comes with what God has given us

But my children including my son with Autism has compassion... he may not show it very often, he may not even at many times know how to appropriately express it, but when you see him and his sisters with our animals, in a safe environment that they don't feel anxious or overwhelmed... they are the most amazing and compassionate little beings- and I hope to God that they never get bitter by the ignorant and judgmental people in our society-

I try to not show them my sadness and anger over "this persons'" actions... I wouldn't ever want to portray myself as "one who gets angry because of what others think or do"

but damn I"m human, I'm a mom, I"m constantly feeling this kind of judgment and someday's it's just hard!

But as soon as I close this button on the computer- I will absolutely hug my kids, and not let this person affect ME as their mom, as a wife, as a compassionate human being!

Because I do know there are lovely people in this world, and many who understand even what I"m writing right now... who too feel way too much judgement from others and struggle in one way or another... and just want something to be easy and not so difficult!!

jI'm breathing again, I"m okay, I"m calm, I"m hungry- so I"m going to eat a nice meal I prepared earlier today in the crock pot with my beautiful and loving family! And not another thought will go to this person's negative energy...

from "Diary of a mom" blog..................

Diary of a Mom blog: "

"

It is so true!

Good morning!

After the haircut day, I wish I could say it ended yesterday.. but not posting on my blog is an indicator- it was not a good day

But I will skip over that day, not go into details except to say...... dysregulation brings out his OCD which leads to no where good EVER!

Remember previous posts about his OCD and "buying" as he says.. it's intense, it makes no sense, it controls him, it is a beast

But he did swim for 1 1/2 hours yesterday with Brian and little by little it got better

Not great, trust me my arm where he has slapped it still stings

from his lashes out of not being able to make sense of all things around him

But Today, he and Megan have been watching a movie together... TOGETHER!!!

How's that to start off the day!

I would almost call it a miracle! But either way- it's a much better start to the day

which is what we need since he is going to the hospital on Thursday for disimpaction.

So it's about getting him in a "good place" to better be able to tolerate all that comes with going to the hospital

and luckily Gretchen gets to come... her first major assignment!

But back to life today, it's a good morning!

Than this happened.......

He had a haircut today! A HAIRCUT!

He went out of the house with Brian and had his haircut by someone other than Brian (as he has done for the past several years)

And as awesome and adorable as he looks.... ugh

behaviors all evening!

Just has been spinning around like a tasmanian devil out of control and whoever dares cross his path...

well, watch out!

ugh

Yes he had a haircut, but this evening slid down hill very rapidly

and stayed in a hole for several hours

And then finally this.....

This finally happened at 10:00PM

but I guess better late than never, right!!!

He decided to make an army tank from this big box!

Sounds good to me, and it has occuped him now for over 30 minutes!

Let's end this night just like this!

And maybe, just maybe if stars are aligned for this mom on a Monday morning

maybe he will continue creating this tank out of a cardboard box

because if anything, it calms him, it focuses him, and it also means he isn't bothering others creating well, chaos!

As it was this evening.... maybe just maybe this activity will help him better organize himself, his brain, his thoughts, his body

so that he is more present, aware, and regulated!

End of story!

Sleep picture of the day......

Sleep picture of the day

Girl time!

I had a great afternoon with my girls!

We swam and played mermaids in the pool, Sarah learned to SWIM just yesterday basically-

where her confidence was matching her abilities! That's huge!

Although she refuses to put her face under water

the little girl can get herself all the way across our pool (it's an above ground, but still 18 feet diameter)

And she's never had formal lessons... only mommy!

So we had a good time, it was a hot day, and boy the pool felt like "butter" as Brian and I say when it feels so amazing to jump into- no shock of cold, just a perfect transition from the heat into the water

Smooth!!

We don't ever get enough girl time...

but just like everything else, I cherish the moments we do get that are filled with love, smiles, and playfulness!

It was fun girl time!

I love swimming

Rocky start to the day, but if I could pay him every day to ensure he got some swimming in every single day.....I would . It is by far the greatest therapy that is the most effective for him. With one caveat, No one else in the pool to get the maximum effectiveness! Either me or Brian is necessary, but that's aut it to actually be therapeutic and bring calmness over him.....I love swimming.....I love what it does for him, so now to scheme to get it in tomorrow. ,. Seems like it would be a no brainier with summer heat, but trust me there is never a such thing as a golden ticket when it comes to my Ty! But swimming certainly helps.

A bit nervous...

So luckily all finally settled last night and the house became silent with sleep!

Today we are being interviewed with our local paper about our Canine Companions for Independence experience, my Ty, the issues he has and how Gretchen has and will help him.

I love being able to tell our story because well, it's anything but typical, anything but easy, anything but what it just simply is.

But I also find, telling our story, Ty's story starts to open a pandora's box for ME!

And sometimes that is just hard.

it's a reminder of all the struggles and challenges we've been through these past 10 years, the constant battles for proper medical care when he was little little

Then we moved onto the constant battles with the school system

and all the things of life with Autism and cecostomy brings to us.

And in one way I am absolutely amazed at how far Ty has come... so many challenges, and so many things he has overcome

and also a reminder of how many challenges he continues to have, and the constant struggles he experiences every day and some days it feels so helpless as his parent because he's 10 and when he refuses our help, what are we to do?

So a bit nervous opening up all those old wounds for me, all the really tough memories of what he has gone through,

and what his journey will be in his future!

Which if you read this blog, you know we really do not "think" much about the future.. it's too hard

We absolutely live in the here and now and take each moment as it comes!

But I understand that is hard for many people to understand and people question how we are "prepared" for his future!

and I simply have no answer!

School, yeah I know, he doesn't go to school... we've tried it and look where it has ended him!

So again, we have had to figure out things on our own, with lots and lots of push backs

and not by the experts, by people who THINK they know, and in reality- no one does!

Today will simply be another reminder of how unique my son is, in so many ways

But it's also a reminder of our continued and constant struggles with him everyday

how it affects our girls

how it affects our marriage

how it affects each of us within this house!

I've never lied and said "it's so easy" because it is hard.. it's hard all the time, just to different degrees ....and we have the good moments thrown in there!

But when you have a 10 year old boy who struggles with so much in life and didn't get "early intervention" as HE SHOULD HAVE..... despite us banging down doors left and right to get help for him

and finally at almost 7 starting behavioral therapy

and of course have learned SO MUCH about him and his needs and struggles through these years... and honestly YES we are the experts in him...

we may not have any degree that would be considered an expert, but trust me... everything we have ever said about our son, has been and remains the exact truth... despite not understanding it by the experts... to the degree it is... his issues have been the same issues since before he was crawling, walking, talking,

and then they just have been magnified with him growing up!

He has made incredible progress, it's patience and time and more patience that WE have dedicated to helping him-

and believe me it's usually not easy- but ultimately we've seen incredible growth in him... sometimes it takes lots of steps backwards to remember and realize the growth, but it's there, trust me!

But again, as far as the interview goes today, it's opening our crazy world to the community- and that's not easy to do.

People always ask (when they see us out and about)... wow that's great, just the beginning, what's next, ... but reality is many times it's a set back that is next...

Just like this week was after an amazing week of basketball camp last week!

That's just reality... and he was at Basketball camp, because we felt he could do it, we felt he was capable of experiencing it without too much behaviors and fall out

And getting through the camp is the easy part, it's the after that everything falls apart for him.. he has no more reserves for even the tiniest of stimuli, and that is when he blows... the smallest of things because his cup is already full from all that was taken in during camp- and it's not about the basketball, there are lights, there are holler's there are buzzers, there are kids everywhere, moving quickly unpredictably, there are coaches yelling to get attention, there are balls dribbling on the gym floor, even fire alarm's sounding for a drill (yes that happened- ugh)

So despite his amazing skills for basketball- his reality is all these OTHER things make it really hard and he struggles to filter out all the things that are happening around him that cause his system to become over loaded!

I told the coaches that they need to pretend that Ty cannot hear and to help him visually by giving him cues, hand gestures, etc to communicate... he simply turns off his auditory system (which is great, it's what needs to happen for him to be able to be in that environment)

But he is simply not listening to any directions, or anything, he is visually watching for cues on what do to next, on where to go, he's watching the other kids on what is happening

and luckily the amazing staff got that.. and wow it really helped him-

but that doesn't mean "he was able to filter out all those extra noises and stimuli that overload his system and then create an inappropriate response to literally some one just talking normally, or chewing food normally at the table, every little thing at that point becomes an absolute struggle- just because his system took in way too much and now he's overwhelmed and responding (over responding)

So, this week was tough for this reason, most people do not understand this aspect at all,

they see the hear and now and see he did camp...

but we are his parents and we know he's on edge, he's irritable, he's not sleeping as well, he's very quick to react negatively to pretty much everything

and this is our everyday reality

and we will be opening this reality up to our community- and yes Gretchen is helping tremendously, and yes he continues to make giant strides (because 6mo ago he wouldn't have even been able to tolerate the camp setting, let alone for 1 week)

but our story is unique, our story is well, not heard of very often if at all!

But are we really alone with our story or is it that families like ours just can't "get out" and be seen much by the community and therefore are hidden in our own bubble!

Because for us- our paradise is in a bubble!

And it doesn't always go so well when we "break through the bubble"

But sharing our story may just help even one other family, bring more compassion for what others experiences are

shed a light on Autism (because when all you hear is "he doesn't look autistic- ugh we clearly need more education in Autism)

When a family like ours struggles, well simply it is nice to just have people smile at you rather than glare and stare and judge!

Compassion goes a long way in the special needs world

and by telling our story, Ty's story, sharing how Gretchen is helping him and our family, and what we hope for in the future now having Gretchen

well, maybe it will just help one other person who reads the story. Maybe another family will get the energy to "look into getting a service dog for themselves or their child"

it just might invite compassion among our community so that it's not so difficult to get the proper medical care and the proper educational services for all of our children who NEED IT!

It might just spark a conversation about what our community is doing to HELP kids like my son, and if there isn't much being done, how can the community come together to change that. My son is not alone

I know so many kids who struggle - it doesn't matter what the cause is but they all have some sort of special need and very rarely do I hear

the parents are happy with how things are going, services are appropriate and effective, etc...

So maybe just maybe by telling our story, and although it makes me a bit nervous to open this up outside our bubble world

maybe things will begin to change for the better when it comes to families who need help with their special needs kids!

and that would be worth every open wound and tear shed.

We always have said and continue to say we love our children, we love our only son and will continue to FIGHT every system that stands in the way of him getting the help he needs... no matter what! We will never give up on him

we will always be there supporting him! And we will continue to keep our family moving forward, and try to bring more smiles than tears, to bring "normalcy" to the girls world, but also show them that yes our family is unique and different

and that's okay- it's not the "things" that bring a family together- it's moments like laughing around the dinner table, being silly, or simply sitting on the couch watching America's Got Talent as we did last night together!

Those are moments. Those are precious memories! That is what they will remember!

Way too much energy at 10 o'clockpm

Wow, what is going on! There is way too much energy happening here and it is way too late. We just had some crazy explosion of nuttiness that turned straight to off the charts hyper overloaded frustrating out of his mind blahhhhhhh! I don't even know what to call it....I am too tired to even proses it with any rational thought.......just go to bed already!!!! Please!,,,,

Sensory reminder of the day for me..... by Angie Voss, OTR

I love this sensory tip of the day by Angie Voss, OTR from Your Sensory Life...

And after a rough couple of days, this is WHAT I NEED to remember

because we do have an impact on his ability to regulate!

It just can be hard on those rougher than rough days to "stay regulated" ourselves!

So I'm taking this in... and I thank you Angie for the reminder!

***Sensory Tip of the Day!*** Our children are little co-regulating sponges...feeding off of our energy on a constant basis....positive or negative. Stay acutely in tune to your own state of regulation...your mood, stress level, tone/volume/speed of your voice, your pattern of breathing, and your body language. All of these can contribute to your child's state of regulation. Read more here... http://asensorylife.com/self-regulation.html ~Angie Voss, OTR

Just moving on

Just gonna move on to tomorrow!  Certainly today was just tough.....tough..my little guy struggled just to breathe.... a tough day full of struggles!   So moving on and praying tomorrow is better! 

Zapped!

He zapped me of my energy yesterday!

Evening time was extremely difficult and full of behaviors

All the way until 11:30PM

Not the best way to end the day!

Not quite sure what was going on, every little thing seemed to tick him off and making him explode immediately!

Megan and he were fighting over blankets, he got mad when he "wasn't even sure what dinner was and wouldn't let me tell him"

which after pouring cups of water on the floor in protest (which btw he knows he is always able to make himself something else.... )

but he actually ate it and loved it!

He was clearly dysregulated, clearly unable to even pause to think about the situation, unable to properly filter his negative thoughts and get information before hitting or throwing!

Just one of those days!

And this morning seemed to be off to a better start, then he started in with "craziness" bothering Sarah and simply being very disruptive and angry- and then he crashed asleep!

Thankfully, he was able to just lay with Gretchen even for a moment and he was out!

Who knows what the rest of the day will bring, but I just hope it's not a repeat of yesterday!

It's taken my energy and then I'm too exhausted to get anything done

I had a talk with the girls last night and said I was sorry I wasn't really available most of the day because I had to "occupy" Ty!

It's moments like that I hate! There was just no stretching myself in any more directions to give them attention!

I know they kind of get it- but I hate that part and wish I was able to clone myself to be more there for them on days like this.....

But I can't, but as he's asleep right now, I have my coffee in hand, and I'm going to go snuggle my littlest and watch a show with her

Because sometimes that's all that is needed

for both of us!

The older, a lot more complicated, but she'll get her "snuggle" time tonight- that's her routine, right before bed!

Sometimes it is just about the simplest things, just simply being next to each other, watching a show!

So that is a focus for me today! And right now!

Thoughts everywhere!

My thoughts today:

everyone slept in- wow moment!

We watched a movie (me and the kids) together this morning- Soul Surfer

Ty struggled to "settle" and went back and forth from watching the movie to going outside to play basketball

a nice moment!

Told Ty I was taking a shower and THEN I could play soccer with him

now this is a statement that I can make and I will never get the same "reaction" from him- ever... he started in, didn't want me to shower, wanted my attention in that moment

started swinging and kicking

and than here comes Gretchen- kissing him, licking him, I gave her command to jump on couch and she and I broke his crazy thought and turned the moment around.

Phew!

Then I gave him 2 options- he can play FIFA world cup on xbox in my room (which then he can be near me since I"m in my bathroom) or he can watch a show

He chose FIFA xbox!Phew

avoided a major situation once again!

And got a call from his surgeon's office about scheduling his hospital disimpaction!

ugh, not good moment!

There has been something every week the past several weeks, that are completely out of our control, and just ARE

and keep challenging my Ty ALOT ALOT ALOT!

Can I say it really challenges ALOT!!! oh boy alot!

having a tooth pulled, being at the dentist, 4th of July events, basketball camp, xray, birthday, going out to dinner as a family

all in a really short period of time!

And now another hospital visit, next week....

So many good moments, and I'm trying to not let the definite more challenging moments, okay really difficult moments cast a shadow on these amazing good moments...... We have Gretchen and she has already helped him get through these moments that just a few months ago would have been impossible or nearly impossible to do. So, I almost feel that he'll do okay (compared to recent trips to the hospital), I really think it won't be AS BAD!

Trust me, based on the last few trips, it's not hard to be even a little better :)

We'll get through it, it's scheduled, it's set, he needs it, and the timing is a hell of a lot better than 6 1/2 months ago..... when Brian was in the hospital himself donating a kidney to his sister.... WOW that was bad timing for Ty to have such a difficult bowel impaction... so pretty much, this next time will be better, because I will have Brian with me and more energy to focus on Ty, rather than being scared out of my mind for both Ty and Brian..... this will be much easier!

Much easier!

Gretchen's first major assignment!

Looks like not only are we continuing to test Ty,

but Gretchen will officially get to be on a major assignment in less than a week....

yep disimpaction surgery!

But when I saw the awesome RNs at UC Davis Children's Hospital surgery center- just 6 1/2 months ago,

I said maybe the next time you see us, Ty will have his dog!

And he does!

Maybe she has some extra special magic for him that day!

What a question from my little guy.......

He did the xray this morning... his choice, his cooperation, all his doing which is awesome on so many levels!

and then in the car ride home... he asks me a question that stunned me!

He said "mom, will my button ever get better?"

I said, I don't know, at least with the cecostomy it is so much better than when you didn't have it.. your body is healthier, you feel better, and it helps you so much day to day

he said "well I'm still young so there is a chance it can get better, right?" Of course I said, there is always a chance...... always!

What a thought provoking question from him, what a deep emotionally driven question that in the past had always ended in behaviors... because simply "talking" about it caused him so much distress and anxiety he absolutely would flip and lose control.

But not today, and I think not with Gretchen by his side. How cool huh???

It is hard.....

It is the life of a child with Autism that brings one good moment,

and then the next time you open your eyes

it's gone and we're back to behaviors!

It is hard to get my act together in such a good loving way to 'HELP' him because clearly he is struggling

struggling in a way that is hard for him and hard for us to know how to best help him!

But at 6:45AM and it's beginning

and I find myself going into a negative place

feeling angry, frustrated, tired,

but I knew if I didn't get myself turned around, it's only going to fuel his state of mind

so I dug deep, and man I had to dig real deep this morning

Gretchen by my side

and together I went to my place to help him!

My voice of Gretchen, my silly dog character of when she is licking him like crazy, he's giggling, (yet I am sitting on top of him because he was swinging and throwing things at me)

and Gretchen is right there sitting on his back-

,p>

licking him and I go to my voice and say silly things

Like, hmm tastes like its been a while since you've had a bath- yumm yumm, nice and salty!

and more things like oh please give me a belly rub, I love your belly rubs....

but believe me it is not in my voice- Gretchen is only 2 1/2 so I talk as if she can't pronounce her R's or her L's and bring her voice of a toddler talking

he loves it and as I knew, ultimately he chilled out!

He couldn't bring himself into this state by himself, that's where he lacks this critical self help skill

when he's not feeling right, he's anxious, he's tired, he's bored, he's bored, he's unsure of how to properly process things happening in that moment, even if really nothing is going on- he isn't able to settle his own body to just exist

he is not able to just sit and pet Gretchen, he isn't able to sit and watch a TV show, he isn't able to at this point do anything but "walk around like a tornado causing chaos and havoc- rather than asking for help- he isn't able to ask

This is a complete out of touch with his own body's needs and wants and on a more difficult day the only way he knows how to "get help" by causing issues and having behaviors!

just like a toddler who is cranky, tired, and not sure how to handle all that is going on- they act out.... this is just like Ty!

but in a 10 year olds body

But ultimately it did work, my Gretchen voice and silliness was effective and he went into the kitchen, washed raspberries, ate them, and laid down to watch a video and ultimately he fell asleep.

This is just what happens, this is just how things are at times for him, it was a big week, it was actually a huge week, and he's been trying

boy has he been trying to collect himself even alittle bit- and we've had moments

but we've also had "other" moments, not so good moments, more challenging moments, moments where clearly he is struggling, moments that I wish I could take away with a snap of my fingers

but I can't! All I can do it dig deep into my patience to help him .... because we know..... he is a good boy, he is a loving boy, he is a very intelligent boy, he is our son

and he just struggles A LOT

and all we can do is our best to help him the best we can and to continue to love him unconditionally!

And in the meantime of all of this, balancing our energy and patience and attention to the girls and each other!

However on a good positive note, the girls and I had "girl mom time"

we all got our haircuts, we went to the library, and then to frozen yogurt!

Yep, some good girl time, giving them some much needed and over due attention, and trying to just "be" with them!

I know they get cheated out on a lot of things, especially our attention, it's hard... that's all I can say about it.... it's hard!

and we do the best we can.... but it's hard!

Being a family

The day that started out not so good is ending on a much better note!  Roasting marshmallows over fire pit..laughing, smiling, being a family! 

Roasting hot dogs

This was a good moment today!

It was simply a more difficult day

Today started off with a different vibe..>/p>

you could just tell from the beginning that it was going to be a little more difficult and challenging for him!

And it has been... not one thing, just little things that most of the time no one else knew about was setting him off

It even was at the point he could not fall asleep for a nap as usual, and it really made him "spin around" like a tornado

bumping into anything and everything in his path

and yeah, that kind of caused some conflicts with his sisters

as you can imagine

so it was just one of those days, a day that hasn't been like the other in a few weeks really

it was to be expected

it was really no surprise at all to me

so I tried really hard to dig deep deep down to pull out my extra patience to help him "calm" down when necessary,

to help "him fall asleep"

when clearly he was struggling

and despite all the tantrums and behaviors, and yes the hitting

I usually was able to at least turn the mood around fairly quickly

and of course our sweetest Gretchen stepped in every time, right on que,

working her part of this

whether it be sitting on him, licking him, and simply just snuggling him

it's almost like he is expecting it now

he seems to get into a position, expecting Gretchen to come in and SAVE him almost

like he knows he's out of control and he can't stop,

but here comes Gretchen to help save the day for him!

and of course me talking as if I"m Gretchen,

saying silly things, and I mean really silly things

it's really like an improv play of dogs

Sadie and Oliver get in on it (me pretending to speak for them, having a conversation)

honestly, I totally see when I "turn into a dog" and pretend to be "one of our dogs voice" saying silly things that we all think dogs are thinking, like hmmm that cat poop I ate today was so yummy

that would be an Oliver conversation

but it works!

I can't explain why, I"m not sure.... it reminds me of the man who recently released a book called "Life Animated"

my dearest friend Brianne gave it to me, and the dad uses all the disney characters to connect with his son who has Autism and loves the disney characters.

It's one way I literally can quickly jump into HIS world, and help him out, stop the negative thoughts, stop the train wreck in it's tracks, retreat with him into what he knows and loves so much DOGS!

If I speak dog, pretend I'm a dog, pretend I am Gretchen's voice, talking to Ty, having a conversation, he loves it and it totally redirects his state of mind, and he gets lost in the silliness of what we are doing, therefore behaviors slowly diminish and go away for that moment!

And trust me, after I've been hit many times today, threatened to hit, it's sometimes hard to dig deep into myself to pull out the patient caring loving mother who knows her son is struggling greatly right now, he has no other way to express how hard the moments of the day are, he has no ability to "stop" it from happening, to regulate enough to know to leave a situation alone, or to be flexible, or literally to just be comfortable enough with his self in that moment to just breathe.

He does when he can, as he has done so much in the past few weeks

but when he can't, he simply can't

and my calm patient self knows that

and wants to do everything I can to help him

and then there is the other part of me that gets frustrated

irritated,impatient,

angry

because it really isn't easy living in this "constant state of constant change" of never knowing how he'll respond to any given moment, situation, anything and everything every minute of every day

and it's just simply HARD some days!

Especially when it's just constant, relenting, and literally not able to take my eyes off of him for he will do something that is mean, unkind, inappropriate,

dangerous, very bad choice, or simply tantruming and controlling

EVERYONE!

And days used to be this way ALL THE TIME, life was pretty hard, okay, not pretty hard- VERY VERY HARD

the past few years really, ever since we "tried" school again when he was 7 and in first grade!

It's been a tough road, a very long emotional road,

a road that at times felt hopeless

and although today was a tougher day than we've had recent weeks

we have had so many "firsts" lately

going out to dinner for Brian's birthday for one

watching a family movie last night

and even today, as tough of a day as it's been

we roasted hot dogs over the "fire pit" in our back yard together

(Brian got some new gadgets for his birthday)

we ate home made french fries that Brian made using his new birthday gift, a french fry cutter

we laughed at dinner, we got silly at dinner

we had several nice moments

and although the day was pretty hard, and pretty tiring

it is so nice to experience good moments even if they are sprinkled throughout the day that has been a little more difficult than recent days

Ty responded every time when he did have a behavior to Gretchen's presence

he responded every time to me "helping" him by using Gretchen to help calm him down

and responded every time to me "becoming" Gretchen's voice and helping him get out of the negative state of mind and turned the moment around to a more positive state of mind!

And as tough as days like this can be, I see the light, I see potential, I see HIM and I know there will be days where he struggles, and that's when he needs US most to help him

But those types of moments are getting further and further apart, and simply filling up many moments with goodness, happy times, smiles, laughter, joy, and most importantly unconditional love which is always present, but he's not always willing to "accept' our love, and simply pushes it far away

love and affection are very deep emotions and some days is just too difficult and intense and drive the moment deeper into darkness

We always love him, and it's hard when he simply "doesn't want us to love him or simply pushes the love away"it literally drives him further into a negative state of mind

literally causing more serious behaviors

this is just what can happen on "those kind of days

But when he can simply accept our love, accept our unconditional love for him,

and not let it drive him further into a hole, but allow it to help him out of the hole

well, this may seem selfish, but it's very satisfying as a parent to see how our love, our absolute unconditional love for him in a good moment helps him and makes him feel "good"

He even gets a little twinkle in his eye, and it tells us simply, he's okay in this moment!

We did help him!

I might have gone off on a tangent here

It's late, I"m tired, kids are in bed

and my thoughts just keep circling around and around in my head

I'm thinking it has something to do with the kind of day it has been

and I tend to replay "moments' over and over and over in my own head, recognizing when I didn't do my best, or what I did wasn't as helpful as I had intended it to be, or I simply got angry in the moment and it got the best of me, rather than me digging deeper and stuffing that anger deep to better allow my compassion for his struggles to better help him

I guess it was just a harder day, and it was harder to stay patient, and it was harder to constantly deal and help him through the many tough moments he had today!

It was just simply a harder day.

But my self reflection always knows that tomorrow is a new day, tomorrow will and can bring many good moments, even if there are some more difficult moments

Tomorrow will be tomorrow and for now, this moment, I am tired and off to sleep!

My boy struggled more today, it was tough for him, many things set him off, and I hate seeing him struggle and have to work so hard at just simply existing!

But just like all the other days, we have gotten through this day!

And I hope tomorrow will bring more good moments than difficult one's, more smiles than tears, more hugs than hitting, more laughter than mean words!

And with that- good night!

Jump shot

So so much today...

1. Last day of camp
2.slept for 2 hours.
3.Brian's birthday today
4.we went to dinner
5. First time going out as a family for dinner in about 3 1/2 years
6.went to dinner
7.I repeat we went out of our house as a family to celebrate Brian's birthday and went to dinner, as a family, together, out of our house,
8.ate our meal together on the patio of the burger place....
9.came home and had root beer floats in our backyard
10.which means our family time was extended and continued after we got hom from going out to dinner
11.we sang happy birthday, enjoyed our floats
12.and to end our already amazing, although tiring and clearly anxious day.......a movie
13.so camp, a birthday. Went out to dinner, had root beer floats and now watching Rio 2 together..... yeah, I know. Quite amazing in so so so many ways!!  
14.and yes Gretchen was right by his side the entire day!!!
Amazing!!!!

Day 5

He is EXHAUSTED!

Ty has been asleep since 12:30pm -

it is now 3:20pm and he's still asleep after basketball camp...... hmmm

and unfortunately I need to take him for a bowel xray-

he's been having issues once again, pain, severe reflux, loss of appetite..

. this kid never seems to get much of a break it's only been 6 1/2 mo!

But he is LOVING camp- and it's actually the first thing EVER that is

EXHAUSTING him...

didn't even know that was possible!

Please no

Please no Ty is complaining about his button his spicy spit and pain in his abdomen.  Really!!!! Ugh. I know its been over 6 no. But let my kid have a break already.   A tooth pulled just last week , having a blast being a little boy at basketball camp. And now problems with his bowels.    Ugh so not Fair for my little guy .  He has agreed to get an xray. So we will start there first tomorrow

But he is nervous.  And can't stop talking about it.  I hate that for him.  But I know he can do it because my Ty Is one little super dude who is such an amazingly brave soul! 

Day 3 of camp is over!

Day 3 of camp is over..

certainly he is more tired than usual (as many of the kids were on this 3rd day of camp)

I noticed Ty doing more just staring off,

more just standing, less literally running here, there and every where!

Definite signs of a tired boy!

And like the last 2 days post camp, he came home, had lunch and fell asleep on the couch for about 2 hours!

That is good- he definitely needed it even more today than the other days!

He was getting very irritable on the 1/4 mile ride in the car home- clearly fatigued and overstimulated where he isn't tolerating much else at that point!

But we managed to get home without incident, and I literally tell the girls to just stay even out of his eye sight- stay away from him, and allow him to BE

I know it's hard to have all things kind of be centered around him and his ability to cope.... but after camp which is such a big deal, I think it's fine to just have everyone stay out of the one family room where he is and allow him his time, especially when he's asleep! That is just our reality- and trust me no one wants to disturb this otherwise the rest of the day will be difficult- and our difficult is unlike most.

So despite the oldest complaining about staying out of that one room, clearly it's best for everyone! :)

And so far, the afternoon continues on without a hiccup- it's hard to say if it will continue, but man I'm proud of that kid!

I know how desperately he wants to do camp, how badly he wants to do his best, how much he struggles to be there, to listen, to play, to breathe with so much happening around him!

And he's doing it!

When we say the fall out is too high of a price (because his behaviors can be so aggressive and dangerous...... it doesn't matter how the rest of us perceive how great something may be

those just are not the factors to take into account- his body doesn't properly process external stimuli signals and doesn't properly respond so the greatest of "even something he loves" can absolutely be so overwhelming to his system that he flips into fight or flight therefore putting himself into danger, by running away, or simply be so aggressive that somebody gets hurt!

He could not have done this camp last summer, or even 6 months ago.

And he is doing it- now, 3 days in a row

and I love seeing him have so much fun, as a little boy who is at basketball camp should.

The world is not the same to him as it is to the rest of us (and even for each of us we all feel the world differently)..... He is doing a basketball camp, he is not coming home and being a danger to himself or others, or destroying property, he falls asleep, he's asking to be left alone, he is being successful- and this we will support and praise him for!

love his independence!

Day 3: We will be leaving shortly for his camp- he has already taken 3 "loop" walks around the block.

One with Oliver (and I don't think he has walked Oliver in easily 8 months)

and is now doing his second walk with Gretchen!

Wow, good for him and this is a very good way to release the energy while waiting for something exciting!

It seems so simple, but believe me it's not!

and him walking by himself- well he has been a kid who wouldn't even walk into a different room of our house without one of us going with him

his anxiety was so high about whatever his little mind created that made it scary

So him walking rather then waiting and not knowing what to do (which usually ends up bothering others because he's bored)

and he successfully walked dogs 3 loops by himself! Yeah... and here we go off to camp now!

Day 2: keep it going!

Day 2: although he didn't sleep well last night- he was up and ready for day 2 of basketball camp!

It was an especially proud day for Brian and I yesterday, ending that day that was full of overstimulating, overwhelming, exhausting, exciting "stuff" without any behaviors to speak of!

Now that is exciting for us as his parents and so proud of our family and of Ty and so thankful for Gretchen! Because we really believe her constant presence, her constant reinforcing calmness,

the 24/7 job of loving him and paying attention to him and providing him with a calming presence without words- is helping him in ways we never knew possible.

All I can say is, he has attended day 2 of basketball camp, he's happy, he's having fun,

and he came home, fixed himself a sandwich, ate it, and fell asleep.

That is a perfect transition for him as far as transitions go. That is what his body needs and it will give him the "fuel" to continue on with what the rest of the day brings his way!

I'm proud...

I'm proud to see him doing this great, and I'm proud of myself and my husband because if it weren't for us

, doing this thing called parenting together, believing in each other, helping and supporting one another (especially when things get tough),

well- we are just an awesome team and it feels so good to be married to such an

amazing person!

BTW at camp today, I saw Ty talking to one of the other camper kids-

talking.. to a kid.....

that's pretty great!

and it turns out, that kid also likes to talk about baseball and sports!

Yeah, we are definitely doing right by our kid....

Now to just keep this awesome momentum going for the rest of the week.. (I would say forever, but I'm also a realist)

so for now, just this week, heck just this day- if we have 2 days without behaviors, that is a reason to celebrate by itself, but 2 days of no behaviors on days he was at basketball camp

well- that is just the sprinkles on top of our treat!!! So let's keep this going......

Please.. can we keep this going!!! :) It's so great to see him being so successful at something he loves so much!

You can do this buddy!!

We are approaching bedtime..... he's still outside playing basketball

but and I know this may be premature to say...

and boy do I wish so badly to get through this day..... without any behaviors!!!!!

Physical and verbal!!

I know he's not in jammies, doesn't have his teeth brushed, and hasn't even come inside yet, but

I know he can do it!!

He can end this day, this big huge day without losing it!!!

I know he can do it!

come on Ty, only a little bit of time to go... boy do I want to get this kid into bed quickly so that I can call a VICTORY!

ahh, wouldn't that be utterly amazing, beautiful, promising, gleeful, exciting, and absolute awesome!!!

Well, we'll have to start with him putting the basketball down (have I mentioned the boy has some OCD issues, therefore once his mind is set on something, there's kind of no way to stop the freight train of obsession and you kind of just need to roll with it in the most positive manner possible!

At least it's basketball, right!

Okay, clock is ticking, street light should be on soon (signaling time to come in)

and then from there, only time will tell what happens next .......... come on Ty- I"m cheering you on- you can do this!!!

Let's end this day with no behaviors.... yeah Team!

pictures from day 1 basketball camp:

Day one: basketball camp

Day one: he had a great time!

not that we expected him not to

it's more we're hoping with all our might that we can get through this day without major problem behaviors!

That's the kind of kid he is... if he actually goes (which is step one of all things- he doesn't want to go, there is no making him anymore, it's more convincing, bribing, everything in our parent autism tool box we have to get him to go)

and once he's there (esp if he went willingly) and it's something he wants to do, well pretty golden at that point

until later- the later is what gets him because it took everything in his child tool box to cope, deal and properly process and respond to all the external stimuli that the world around him throws at him

and it's a simple, Megan closed the door too loud- so I'm going to absolutely explode with all my might into behaviors because I just can't deal any more it's all too much after dealing all morning

that's his brain talking to him and it just switches over to fight or flight and boom- there we go!

So again, we expected he'll do great at camp.. it's basketball!!!

But it's in a gym, that echoes, kids screaming, laughing, buzzers buzzing, whistles blowing, balls bouncing, lights flickering, kids moving, kids moving quickly, kids approaching his own space, directions to follow, directions to process and understand, directions, directions directions, games, more buzzers, more kids running around, coaches talking, more balls bouncing around, and lots and lots of other things I know that I am not even aware of because I'm not him!

He rocked it- he did great- he's an awesome basketball player- (I even think he might have impressed a few of the coaches :) )

But will there be a fall out- will he be able to refuel his tank to a more acceptable level so that the rest of the days events don't completely make him explode?

It's a good sign that when he came home he fell asleep within 10 minutes!

That is exactly what we hope will happen- it's his chance to refuel, get his "tolerance" back up to acceptable levels to be able to tolerate the world environment within our home (forget outside, we're talking just basics in the house )

so time will tell, I know Gretchen helped him because she is just always present therefore always a focus and comfort for him

And as far as camps go- this one is awesome- about 40 kids, the staff have been so incredibly helpful and supportive for Ty, and really do a great job of having fun, teaching basketball.

People who don't know my son, always just see this adorable boy, who is following directions (to the T let me tell you there is no rule breaking for this kid, and he doesn't allow others to break the rules either- total justice police)

and he's good, and is participating, and is following directions, and honestly blending in so incredibly well it's sometimes overwhelming because we know how hard he is working to do that.. to blend in, to participate, to engage, to be present, to be there, to be a little boy who is having fun at basketball camp for the first time ever!

we know how hard he is working, and we know how hard we have all worked to get him so that he can go to basketball camp!

It's really a big team of us who have worked tirelessly and endlessly to help him so that he can do this!

And it's awesome!

I love the quote:

and just a funny one since I hear ALL THE TIME "He doesn't look autistic"...... welll

It all starts tomorrow.....

It starts tomorrow!

His first ever boys basketball camp for 3 hours every morning this week!

It starts tomorrow....

To say he is excited is an understatement and for him excited also comes with anxiety about what to expect, what it will be like, and all the things in between that his little mind is constantly in motion trying to think of to be better prepared for what tomorrow will be like!

It starts tomorrow....... like I said in the post when I first signed him up, just after we got back from Canine Companions training

this is literally jumping off the cliff for us or it will literally be the greatest experience my little boy has ever had!

And it all starts tomorrow!

Happy calm fairy goodness

Still reflecting on this day. It was a strange day. In a good way though. We helped reunite a sweet lost little puppy, we laughed really hard at dinner, together, as a family. It was certainly not the day I would have expected only one day from his first trip to the dentist that ended with a tooth being pulled. Not the day I expected at all! But in a good way! ESP the dinner time silliness , Such a great family moment! Is this all because of gretchen? I think these are the subtle ways a special dog can just work her magic, even when we don't know it. It just must be her presence, it's like fairy happy calm dust that just flats everywhere, and if u are around her long enough, well you too will catch some of this calm happy fairy goodness! You just can't resist it, not even Ty! That's a good thing!

It was pulled!

He went to the dentist (nervous as hell, but did it)

and they took an xray

sure enough I was right an abscess tooth!

They need to pull it

I think Brian and I looked at each other and said OH MY GOSH

not that we were really surprised, more like, holy crap how is he going to handle this?

But he did it, (again talk about frozen stiff holding in everything he had that wanted to fight like hell

but the tooth had to come out- it was a baby tooth, so now it's over!

And I"m really hoping it's a good motivator to get him to the dentist even once a year would be better than what we have been able to do the last few years

Either that or he'll never ever go again as long as he can fight

ugh.. but it's over

He only punched Brian in the ear as he got into the car and I was still taking care of insurance details so wasn't around to see that he is losing it

and stupidly opened the door next to him to see how he was and check on him and Gretchen

and yep, popped me in the face with glasses and scraped up my nose!

Damn should have expected that.. he was starting to throw punches just as soon as they pulled the tooth out- he started crying really hard

which is kind of amazing since he's not usually crying, he's more fighting

but his crying quickly led to punching (or trying, I had anticipated he would do this and so was holding him in such a way that he really couldn't get any power behind it

ugh.. what a morning- I"m so tired,

it's so fatiguing and I hated having to put him threw it,

but no choices here!

It had to be done, it's now over.... and we'll see how the rest of our day goes!

Luckily he came home and fell asleep.... and thank goodness for Gretchen!

There would have been no other way to get him there so willingly

ahhh it's over (I think I already said that, I am still reminding myself that it is over and to breathe...)

Kind of haven't taken a breath all morning in my own anxiety over this situation

and what it will do to him and therefore the after math that we usually experience!

And this was a big deal...

obviously!

But even though they used the nitrous oxide, I really don't think it had an effect on him AT ALL... and although they used novacane (the numbing stuff) nothing really seemed to be taking the effect it was supposed to, he never said his fingers and toes were tingly like the dentist said, and well, he says there is no numbness in his cheeks and she said it would take 3-4 hours to wear off... and nothing... ???

Is this another one of those "he didn't respond to it the way he was supposed to?"

God I hope not... how do you tell if he can't communicate properly ... and trust me, he never had a calm face- he was stone cold deer in the headlight OMG what are they doing to me look..... the entire time

But it's over... it's over it's over it's over it's over!

ehhhh it's over!

I rented the Lego Movie to "motivate" him for a calmer day, because he has been wanting to watch it, but we haven't .. I knew I would NEED it for motivation at some point.. today is a good day for it!

It's over..... It was pulled, it's out and it's over!! I am proud of him. Really proud of him!

And thankfully, it's over!

Dentist?

I think Ty has an abscess..... tooth or gum..something's wrong.    First dentist appt in probably 3 years.  Not neglectful parenting.  The rest of us go the routine 2x a year...with Ty again like so many other things, we could not safely get him there and cooperate.  We have been in a state of how critical is it???  If not critical, it had been on hold.  Just could not do it with him.  But I did explain that it will only get worse and next week is his basketball camp. And he does not want to miss out on any of it!!  He seemed to get that and tomorrow morning hopefully he will cooperate ....never a break never a dull boring moment... I wish!

His thoughts took over

Day started at 5:20AM with Sarah having bad cramping and needing to sit on the potty for about 45minutes (she has her own pretty touch bowel issues, and we are trying something because it's gotten so bad for her :( this cramping is not unusual, and it's just to different degrees)

and I felt her skin, she felt very very warm,

she felt feverish

and Megan just had a strange fever thing on monday, for about 12 hours- she woke up the next morning fine, but had a fever of 101 and nothing else.

Well, took Sarah's temp and it's 101

ugh... okay, no big deal, no other symptoms, but she's upset about the cramping and remember this is at 5:20AM

I get her set up, she usually likes to go on an ipad while on the potty and I really wanted to go back to bed

but she needed me to rub her tummy, sometimes that helps

Fast forward a bit in to the morning, Megan is off to theatre camp for a few hours (so great she can get herself there)

and Ty had been playing with neighbor friend, and it went from basketball to nerf guns

now this usually doesn't end well

in fact, we have a very strict rule, no nerf wars..... it ends the same way EVERYTIME!

behaviors, hitting, obsessed over it

so I had told him he could do targets with the nerf guns but no nerf wars...

there is a big difference to how he responds- it gives more of a focus compared to running like a chicken with its head cut off...

and guess what he still started to play nerf wars........ and yep everything blew up.. and he even tried to tell me that he promises to not have a behavior (as if he can stay in control of himself- I WISH)

and long story short- yep, I have scratches on me, I was kicked and it all went down hill from that point.....

over what???

Nerf WARS..... this is why we don't do it... he has never been able to do that

with friends especially.... his mind just begins to spiral...

and what sucks more is he had been doing SO WELL!!!

we really have had a good little run of minimal behaviors up until this morning over what I knew was already a bad idea the minute he was talking about it! UGH

and then in the middle of "having to help control him"

Sarah gets another bad cramp and feels like she's going to vomit (that happens a lot, because things are either going to go out one way, or force things out the other way

it's usually just a feeling she gets (so far anyway)

but I don't take it lightly- so I get her set up on the potty, barf tray just in case (that's how frequent it is, we keep it in the bathroom )

and she is still on the potty, but in less pain now, which is good

Ty finally chilled and is doing something with a box, dogs, and some training or something

I don't want to turn around and distract him because he has finally let go for now of the obsessed though of nerf wars and is onto something different

but what sucks is , now he just cannot go out and play with his friend today.. the entire cycle will start all over

and when he becomes more dysregulated like that, the more he is oppositional and jumps into behaviors

it's such a crappy cycle once it starts

ugh...

so lots of attention and focus to keep him occupied and distracted from those thoughts (it's literally keeping him away from his own mind...... when he can't control his mind, it gets him in trouble, and it becomes a very dangerous cycle

but trust me, it's so not easy to keep him constantly distracted from himself

esp when I have one not feeling well today

these can be some tough days... but it's been worse and we always got through those!

well sort of ;) and just had a short break from this post because yep

his thoughts got the best of him and water is now everywhere, garbage can lid thrown and now broken

shoes were flying, and anything else he could find

ugh... and worse is I know at this point he is hungry (he hasn't eaten yet today, which is so unusual- it's usually it's own obsessed routine first thing in the morning)

and he is also tired, he had not yet napped this morning, as he always does

really not much different than a cranky tired, hungry 2 years old

but he's 10 and he's much stronger now

and here is a picture I just took of how it all ended:

Ty's food truck

Ty watched one episode of the travel channel food trucks. And then this.....

Funny sleep picture

It is 100 degrees out and he decides to take a nap here????  Crazy nap place!! He cracks me up

Movie day

Watching Rio with kiddos since I haven't seen it yet so we can watch Rio 2 as a family later today!!  Good moment

The same one....

My husband has a birthday coming up next week... always a tough time because he always says

don't buy me anything, don't spend any money, I don't want anything, blah blah blah

yeah sure, like I"m going to let a birthday of my hubby pass by without even one gift for him to open!

I don't think so!

But now after I had a good idea, he and I had been talking about this, pondering, looking, getting ideas- finally he wanted a propane fire pit for the back yard

nothing fancy (we just aren't fancy people), more practical, small, and well most importantly inexpensive!

So I went ahead and FOUND one on line and purchased it TO SURPRISE HIM

and literally in the exact 15 minutes I was purchasing this fire pit I found, he was doing THE SAME THING!!!

He emailed me and said it's an early anniversary gift (anniversary isn't until end of August)

WHAT! SERIOUSLY!

but I got you this and funny thing is we both bought THE SAME ONE!!!

but the one he found was 5 dollars less so I went ahead and cancelled my order, but now I have nothing for his birthday!!

ugh..... hmmm I have no idea ...

but what is funny and tells you how well we know each other after 19 years of being together

we picked the exact same fire pit.... good value, looked cute, had features we discussed, etc...

umm yeah, kind of perfect for each other- love my husband!

But damn, what about his birthday?????? Need to come up with something!

update:

UPDATE on irrigation problem:

good news, got the gravity bag to flow- turns out something occurred that has NEVER happened to him before in 5 years now

but his mic-key button had a clog, so had to push a syringe of solution through the little port on the side that I have never had to use before...

funny how things still throw you curves even on the things you THOUGHT you knew inside and out

but got it going, he was patient, and bowel irrigation completed with out any further hiccups!

It's not going.....

ahhhhhh

something is going on with his button- the port for his irrigation..... ugh!

After playing in the pool for over an hour (remember the swim thing for self regulating... it works)

he and I had a conversation out on our deck, something about halloween (I kind of tuned it out because he tends to get very OCD months ahead of halloween and oh it's so not fun)

so I did the head nod, agree acknowledge as he talked

and then he agreed to go on the potty for his bowel irrigation (I love that he is doing it earlier... this change is so awesome for so many reasons)

He got his xbox soccer world cup game set up

he patiently waited for me to "hook" him up

and nothing... NOTHING>>>>>

WHAT THE HE##

this is not good

I do EVERYTHING I know to fix it- and still NOTHING

he is still being as absolute patient as his little mind will allow

I disconnect, run the bag into the sink, I check everything, I massage his tummy, I have him stand up, I massage his tummy more (maybe there's gas in there or something ever so tiny causing this inside- because

I have now checked, rechecked and even changed bags and it's flowing just fine

until I hook it back up to him and NOTHING!!!

ugh this sucks-

I tell him maybe we'll try it again in a little bit, take a break, let me "re" check everything again- he agreed and went and laid down with Gretchen

oh crap what is going on...is something blocking it on the inside of him- which means some impaction- ugh

good that when I called Brian to give him a heads up, he has all the confidence in the world he can "fix" it that it's probably something to do with the bag, I"m doing, etc

and GOSH I hope he's right....... I really want him to be right....

because, if I"m right, then it means xray and more invasive stuff at home and if still not good results..... ugh our dreaded trip to the hospital.!

It has been 6 months now, oh I hope we can get another few months before having to go back- for Ty's sake!

Fingers crossed, there is something wrong with the bag, the tube, something other than Ty's bowels at this point..... please!!!

Great sensory tip of the day: swimming and why it's SO GOOD!

Angie Voss- OTR: " ***Sensory Tip of the Day!*** Swimming is an EXCELLENT source of powerful sensory input, particularly full body proprioception. Proprioceptive input plays a critical role in self-regulation...as well as many other benefits...such as supporting motor planning, body awareness, body in space, posture, gross motor skills, and many more. You can also incorporate prone extension, neck extension, and upper body stability and weight shifting in to many of your swimming activities (as pictured) which supports sensory integrative development even more!" ~Angie Voss, OTR http://asensorylife.com/sensory-benefits-of-sports.html

Swimming is by far the best thing Ty can do for himself!

It helps him so much, and then he and Brian play basketball in the pool- so even more intense exercise, movement, resistive movement, all helping his self regulation!

We only have an above ground pool- but it's the greatest thing every summer!

I am always sad to take it down when the season is over- because it's SO GOOD FOR HIM AND HELPS HIM SO MUCH!!!!!!!!

Something is different

I don't know.. something is different with him!

It's been a pleasant 5 days without major behaviors

without having something thrown at me FOR REAL...

where I am the absolute target to his frustration and he wants to knock me out

even if it's a stupid pen

he has thrown objects, but he'll throw it to the ground, he'll throw it somewhere else other than directly at me!

When he has gotten upset, especially because a transition is happening, play will be ending, it's time to go in, it's time to just move to the next moment in the day

which is so hard for him, regardless of our "timers", our transition warnings, our countdown, all the things we do to help him with the upcoming transition

it still usually gets the better of him and he inappropriately handles that frustration

but EVEN these transitions, have not been as severe as they have been in the past

and by past I mean, less than 2 weeks ago

He right now is in a more stable mood (than again he's asleep right now, maybe I shouldn't even think that until I see him awake this morning... oh he's already been up at 7..... and climbed in bed with me and back to sleep he went!

But his mood, his demeanor, his body language

all says there is a calmer presence about him, less anxious, less nervous, less fixated on a particular thing, item, or topic controlling his brain to try to bring sense to his world

and this my friends,

is a good thing!

Regulation=calmer boy=happy mom=a good day for all!

And this is still 3 days post fourth of July

and we participated

and we continue to glide

I don't know- it's just not usually like this

but I will simply enjoy and TRY not to worry

wonder

feel anxious about when it will end! I am going to have fun with this good time with him! Happy Monday!

like a petal floating down stream

ahhhhh quick somebody pinch me!!!

okay, actually don't, because I DO NOT want to wake up from whatever this "dream" like life is going on!

After the good 4th of July festivities last night and then he sleeps until 8:30AM

then just hangs out watching fun ESPN 1976 NBA slam dunk contest with daddy

giggling and cheering the awesome dunks he's watching

then minor issue- but got through it

then he and I playing a little soccer out front!

ps thank you World Cup for igniting a soccer bug in him... because well, that's my thing

and wow he has skills, wow he has such talent, wow he's never had any formal soccer experience (except one time when he was 5)

and just wow!

Then I was done (and hot outside still in jammies)

so we just transition into the house- which is a wow moment in of itself

and now he's playing FIFA Soccer 14 on xbox

which is a big deal because the only thing he has played on xbox in the last 4-5 months is NBA basketball

remember rigidity?

So, just WOW WOW WOW!!

I don't want this to end,

it feels so nice to see him just moving through his day moment to moment in a very fluid way,

kind of like a nice flowing stream, just gently flowing with no rapids, no rocks to get caught up on, with no crashing or thrashing of waves

simply flowing ever so gently, as if you put a flower petal and were able to walk along the stream watching the flower petal just slowly move down stream

not getting caught up on anything

just enjoying the experience of floating

yeah, kind of like that! So please do not wake me up from this... I"m enjoying my float down the stream

I'm enjoying watching my boy float like a gentle flower petal down stream

ever so peacefully and calmly

now some breathing time!

It was a happy 4th of July!

The day is not officially over

there is still time

but I"m gonna say it anyway

WOW!!!!!

What a fun and exciting day we have had

Our neighborhood block party- which is a pretty big event- probably 100 people, closed down street, street fireworks and sparklers, this year a live band (it's a neighbor so of course!), ping pong tournament, BBQ, kids, kids, and more kids...

I still cannot believe how this day has SO FAR gone..

Brian and I even got to sit, drink a beer, and play ping pong ourselves

WOW!!!

Just so proud of Ty, and really of my entire family-

we had fun, we relaxed, we joined the party

and we had a good time!

All the way down to watching fireworks show ... it was great!

I'm just so thrilled we were ABLE to do this ...

and here's the kicker part..

I"m closing my eyes and watching my back

but here goes

NO BEHAVIORS!!!!

ahhhh - that is a happy scream with a big smile on my face! Yeah I know, pretty cool!

Now I"m just going to end this here, now on that happy note!

So happy 4th of July to everyone

I hope your celebrations were as fun as ours!