including myself...
but the kids- wow...
each of them struggled with things today...
It must be the cold we are all trying to get over, right?
It certainly has been a very odd day full of all kinds of unusual "responses" and reactions from everyone..
Maybe there is a full moon?
Here's to a better calmer, more "typical" kind of day- and trust me, I know we are not "typical" in any way... but after today, I'll gladly get back to our more "typical" day! Good night!
An up and down kind of day-
full of "good" moments and "more challenging" moments
He, Gretchen and I went to local just around the corner park and lucky us the tennis courts were open which means.....
Off leash play with Gretchen!
We had so much fun, she had so much fun- and after a short visit, Ty wanted to go home.
I guess I need to remember (as excited as I am about getting out of the house more, and how simple going to the park may seem)
the reality is it isn't for Ty.
Clearly it isn't, because after maybe 15 minutes, he wanted out!
But it is an accomplishment- may not seem that way to the average on looker
but it absolutely is- he is a kid who up until a few weeks ago-
absolutely refused to do something like this
was so uncomfortable out side our home environment, it had too many challenges and unknowns, it attacks his senses like none of us completely understand- and that nothing was motivating enough for him to take on the experience
So, I know it was a big deal, it was 15 minutes of fun for me, but I know it had to have meant something completely different to him.
Back to remembering baby steps- baby steps baby steps baby steps!
celebrating the little things, celebrating the progress that I know is happening every minute since we've had Gretchen!
This is what happened to both he and Gretchen when we came back from this excursion to the park....
Clearly it wiped them both out!
Ty has had a pretty good day, in fact, darn good considering daddy stayed home from work with a cold and cough, and just from that point of a major routine change, very good day!
And then as they say, S * * * hit the fan!
And it was a pretty bad one- why?
Megan made an insensitive comment, while they were swimming, having fun, and it was all over from there!
His sad feelings and crying quickly turned to anger and rage... and even hid in a shed
which scared me because I didn't know where he was and didn't know if he took off
And he wasn't settling down quickly- he escalated and got angrier
it was a hard one to watch, it was a hard one to help him get control
it was hard!
Gretchen did her job, and he resisted and resisted and resisted for quite some time before
finally after 40 minutes, the tears came back again, the anger subsided
and the cycle of emotion was coming full circle back to sadness
and wanting help and comfort!
I hate seeing him in such despair, but I also appreciate his despair because it doesn't come easy to him
Anger, rage, and physical-ness is what occurs by default, first emotion, complete reaction to pretty much most things.. (we are working on appropriate reactions- because when you are happy, showing anger or being mad, doesn't show you are happy- it shows you are mad!)
You would think this would be instinctual- but it's not!
Not even a little bit- but making progress,
That's the important thing!
Gretchen also helps him find his appropriate response (even if it's not instinct and he has to think about it)- that is much better then flying off the cuff over an ant crawling on the rock that is outside! (See how ridiculous it can sound- that's how ridiculous how over responsiveness can be (to others any way)... we work on appropriate response to the appropriate action...
but today, it was just too hard!
But it was a series of moments in the scheme of a day- and I'm so proud of him!
It has taken us a very long time to get "him" back to this point of enjoying life a little bit more-
being present to enjoy things that he likes to do, more engaging, more calmness, and literally more love and expression of happiness!
But somedays it just hard... some moments are just hard.
But hard moments don't take away the good one's!
It doesn't cross off all the positiveness and happy smiles we've seen in that same day...
but it does tell us, it's not easy and everything to him is a challenge-
but progress no matter how slow is still progress!
And that is important!
and Ty and Gretchen both did so well, we stopped by the local store next door to "get lunch" and then walked home to eat lunch...
and then had to pick up little sister (we drove and didn't have to get out of the car - which seemed to work out for him)
But this simple "living out of his bubble world" even if only for brief moments of the day
is so exhausting to his system, he's onto his second nap of the day!
Now napping is the preferred coping skill, compared to meltdown aggressive crashing type behavior
which we had a little bit of- over nothing as usual
but even with that occurring Gretchen steps in and it's fantastic...
it's just what he needs when he no longer can stay in control of himself, and I hold him, and call Gretchen over- she licks him, tickles him with her tongue, makes him start to laugh, literally turns his mood around... and I use hand over hand to pet her, stroke her- and I resist his "tries at getting her to stop" and
continue until he calm himself enough and ends up laying with her....
Now I'm pretty sure this is how it's supposed to go- dog helps boy regulate and calm down... and decreases the time and frequency, duration of the behavior meltdown and brings him back to present...
couldn't be happier to have Gretchen around!
we quickly said, no more, everyone has gotta sleep!
The problem is even though Ty has a double bed, Gretchen is a big dog!
She takes up a lot of space.. and Brian was quickly over that and trying to come up with new solution!
So the full jump wasn't successful, so we thought, how about a mattress on the floor, daddy sleeping in the same room (for now) but not in the same bed... giving everyone more room and maybe this will help Ty adjust to "this change and still feel comfortable to KEEP SLEEPING!!"
And I know, it's only been one night- but yeah, he slept until 7:00AM
This is huge because Brian was not in the same bed, he was on the floor next to the bed, and it was only Ty and Gretchen.
Now let's just hope it repeats, and once we have established a positive pattern of this sleep arrangement, then we can again try Daddy out of the room.
I guess we just underestimated the power of the comfort Ty still needs in order to "sleep"....
but baby steps, baby steps!
it's just nice to see progress in the right direction!!
A trip to home depot- was a success... and every time Ty "wandered" off(he's always in the corner of my eye of course- he just doesn't know it and he is always in the veggie plants section, I know his "place)..
.. he always came back to check in with Gretchen...
(I've realized he may bolt from me, but if Gretchen is with me, he'll always come back to check in with her!)
Yeah!
My day was full of happy moments.. our family swimming together (probably will be the last time all summer, but we always manage one family swim), and best of all- my boy playing chase and silly with Gretchen- and Oliver even got in on the fun!
It was sweet music to my mama ears- listening to him laugh with such joy and carefree! Happy moment indeed!
Big day full of swimming, puts my boy in a happy mood at the end of the day!
Here he is dancing with Gretchen! love it!
We have a large above ground pool and it's probably the best therapy for him!
Better than any outside therapy and meds- it's a time of year we always look forward to - because well......
being in a pool of water is like having a constant weighted blanket envelope your body and squeeze- plus he crashes when he jumps in... he regulates his breathing when swimming under water... he loves it!
Now the only bad part is he isn't able to tolerate having others in the pool with him. Too much for his system... so it certainly makes it a little bit harder for the girls!
We usually get one "family swim time" each summer... and it's usually okay for about 5 minutes, then all hell breaks loose. But Pool is up- he's exhausted
(and I'm sure waking up at 4:15 Friday night and 3:00am last night doesn't help....
we think our experiment of him sleeping on his own with Gretchen is not successful at least at this point. And in reality, we cannot keep getting up that early - Brian and I are too tired- sleep is way more important...
so I think we'll forgo the "sleeping arrangement" for now and just get back to "daddy, Gretchen and him" snuggling..
. and hope everyone gets the much needed sleep at this point.
then some canine magic happened....
and as he sits on the potty for his usual nightly bowel irrigation-
I hear nothing but laughter coming from the bathroom.... he and Brian are watching America's Funniest Home videos....
and whatever they are showing is making my two boys laugh so hard!
It is music to my ears!
A nice way to end the night.
They have been at each other all morning- it's driving me absolutely nuts! Everything routine wise is off for him and therefore, he's off!!! Just when we were trying to settle back into a routine, and having moments of success... too many unexpected changes in the schedule, and he's not dealing with it very well!
I told Brian Ty has been in only 3 states of mind the past week....
1. Completely jacked up- hyper, over the top
2. Completely mad, angry, controlling, ready for battle (literally)
3. Asleep!
This is the transition, this is his only way he knows how to "cope" which of course is why we are constantly trying to help him-
It's certainly exhausting and we are only going into a weekend- which means only one thing
change in routine once again, and not only that-
It's a holiday weekend- so ONE MORE CHANGE!!!
Just desperately want to get him settled- But one thing is for sure!!!
Check out this photo of him and Gretchen!
Right now I'm trying to help him understand when he's mad- those are his mad juices flowing through his body- but all he has to do is pet Gretchen and his happy juices will then fill him!
It's so hard when he is so out of touch with his own body, how to process all these feelings appropriately, and respond appropriately!
And exhausting.....
So right now, I'll breathe.
not sure what the rest of the day will bring, so I'll just breathe and then continue the march of keeping him calm!
Want to know how off he was today, he didn't want to come on a walk just down the street with me and Gretchen!
That's the first time since we've had her... because even if he says no, I still walk and he has always joined up with me....
So this mama has a critical mission ahead, and that is to help Ty regain some control over his body and his reactions and settle in, be present, calm and not be angry at all things!
Calmness, breathe, calmness, breathe, calmness, breathe.... this is my meditation!
How amazing is our sweet Gretchen.... notice the paw over his neck- just to let him know she's there with him!
I just love it....
she really is working her canine magic!
A much needed break from the outside world and all the stimulus it offers
It did help my little guy have a better day, a pretty calm day with just me, him and our 3 dogs.
But you could definitely tell he was on edge, agitated, and at the drop of a hat might explode
I hate walking on egg shells, but I may be part of the blame. I got a little taste of the "outside world" and I think I over did it for him.
It's back to what we know, and probably small small small doses and then a big break.
I got excited about the possibility of doing more outside our home environment. Without taking into consideration it might just still be too much. Especially after a whirlwind 2 weeks- which were so great!
But the big difference of being there and now home is, at some point there are obligations, household chores, many transitions, and the inability to give him 100% of one of us... as things had been (esp in the beginning of CCI).
The great thing was after several days we saw an independence we had never seen. He was comfortable to come and go from building to our trailer, ride his bike, and didn't need "as much" of our constant attention.
At home right now, we are back to him needing a great deal of our attention. "Watch me play basketball, watch me play with the dogs, watch me play xbox, watch me....." this is our usual - he needs our constant focus in order to feel some what organized and safe. And our physical presence where we can be seen ....
Which is easier for me to do during the day, that is my main focus- however after coming home from a 2 week trip away,
let's just say there are LOTS of household chores that have to be done, laundry, yard, cleaning, cooking, all the regular day in and day out things!
So this is definitely more challenging right now- for both of us. I was hoping he would maintain some of this independence, and he still is wanting my entire focus.
But that's okay, baby steps baby steps... I sometimes get ahead of myself... especially when we see some amazing changes-
but I also need to remember what our therapists, OTs etc have all told us- some days will be easier to do things than others, it depends on how he is processing it all.. and the days that he loses it- was just one thing too many....
So, I'm arranging Sarah to be picked up from school for the rest of this week. Maybe we'll plan on 1 or 2 days picking her up-
and just need to get back to a good routine full of proprioceptive calming activities, get his body back to a calmer state, back to a state that he can better tolerate excess stimuli, be more flexible, and literally just be present.
right now, he is doing a lot of yelling at everyone, a lot of very nuisance behaviors towards sisters, a lot of behaviors that tell me his body is out of control, he's lashing out and we have to help him stay focused and in a good state of mind. He's not capable right now on doing it on his own.
But than again, we are still transitioning home and transitioning to this new amazing chapter with Gretchen.... and want to know what she does when he starts getting agitated and starts having behaviors.... this is great
she goes and licks him.. she wiggles her little doggie behind and gives her full attention to him- which has occasionally been breaking the "cycle" of the behavior...This is a good thing. This is what he needs! This is magical!
With that obviously will come some difficult "moments"... as there have been today, but one notable moment today which was ALSO pretty amazing was he and I took Oliver (our little dog) and Gretchen for a walk to the park.
We were hoping the tennis courts would be available for us to let them off leash to play. We were prepared with tennis balls, and a frisbee. I was looking forward to some "off leash" time, Ty was looking forward to playing with the dogs. My mistake was "planning on going there to play in the tennis courts.
What ended up happening, was not that. The little preschool that is located there let out right when we arrived, and kids running everywhere, including in the tennis courts. I anticipated they wouldn't be long and suggested we wait- take a walk around the loop- and he, thought disappointed and beginning to get angry, agreed.
We enjoyed the walk around the loop and the kids were still playing by the time we got back around. Yes, this did start to cause some steam from his ears... so as quick as that I distracted him by running through some commands with Gretchen. Took his mind off the tennis courts for just a blip of a second..... then the kids started to leave.
We thought- great- our turn! Except, yep you guessed it- someone rode up on their bike ready to play tennis!
UGH.. seriously-
how much more can I throw my son's way- really- after all this distracting, his trying his hardest to be patient, and now we won't get a turn!! :( So, what happened next you wonder? Well, some yelling, some verbal insults (as we call them- thank goodness this kid doesn't actually know any "real" swear words... I know it's a just a matter of time-) anyway, back to Ty and his reaction.
He was mad, he was furious, he blamed me, he literally didn't know what to do with himself.
He simply didn't know how to handle this unexpected event that is now causing us to change our plans.
I basically ignored him, I helped him by giving him the words to help him express his anger and frustration at the situation....
for example-
Mom I"m so mad.
Mom I really wanted to play with the dogs.
Mom do you think we could come back another time.
Mom I'm so disappointed we don't get to play.
I do this as a coaching tool to help give him the words to express how he's feeling.....
he lacks the skills and the tools to do this himself... to him - he's either happy or mad.
Nothing in between! This certainly makes "coping" much more challenging when you don't know how to properly respond to any given situation... this is what his world is.
Lots of situations that he doesn't properly process to then have an appropriate reaction..... he typically over reacts to most situations... or he doesn't react (but this not so much- ).
Anyway- disappointed he was! So, I went about walking with Gretchen, practicing commands and at this point ignored his words and inappropriate response. (and his lashing out at me). I was hoping with some time, he would calm down so that we could come up with another plan. And after 7 or 8 minutes, he did just that.
He first started in with "you owe me.... blah blah blah" which is a pretty typical response from him- he feels cheated, he feels any circumstance that was not what he was expecting is our fault, therefore we "owe him"....
not sure where this all comes from- it's part of his OCD for sure.. I've posted in the past about "buy me" I want to buy" type behaviors..
. anyway- again- I ignored and went about my walking around with Gretchen... I could see he was calming down a bit, and then he simply asked, in a calm voice, "can we go to the Nugget to get lunch, maybe sushi?".......
I paused, I thought about it, and then I told him, yes, I could see how angry he was, how mad at the situation he had become,
and I also saw him finally take a pause before escalating it further, and simply ask about getting lunch. So, yep, let's get lunch... that in my book was an awesome reaction in the end, to a disappointing situation. I was very proud.
Now I do wish the rest of the day had gone equally as well as that moment- unfortunately it didn't...
but I'm listening and it means we 're doing too much!
Tomorrow, we'll stay home and work in the garden and enjoy the dogs here.
It's just what he needs!
But I can already tell how Gretchen is helping him "in the heat of the moment" when he usually loses it and lacks any reasonable reaction...
it's hard to stay so angry when a doggie is licking you like crazy..
. it seems to help him "snap" out of the moment, even if only temporary!
I think she's gonna work out great!
Caution: you might just squeal!
I'm pretty sure it doesn't get cuter than this!!!
Ty was thrilled to hand out bookmarks to interested classmates of hers and other curious kids!
But one specific friend of Sarah's was very curious, and had a talk with her mom about what Gretchen does for Ty!
And I love what the little girl said to her mom!!
This is a perfect description of what Gretchen does and is for Ty!
I quote "he gets to bring his best friend everywhere!"
Exactly!!!!! Gotta love little minds!
It would be quite overwhelming to put it all into words right now. So I think the photos I have selected can tell the story better. But I can say is it was the absolutely most amazing experience- I have never seen my family so close, engaged, happy and smiley!
It was wonderful and gives me hope that this next chapter is going to be better for Ty and for our family- now that we have Gretchen! She is a Lab/Golden Cross female, 2 1/2 yo, 54 lbs and is the greatest dog!
We learned about 40-50 commands over the last two weeks- she already knew them and was well trained.
This training was for us. We learned so much and had a great time as well. Met some of the most amazing and most inspiring families, people young and old of all different abilities.
It was one of the most happiest times for my family.
We are so thankful we got to have this experience, and now as we are back home, settling in with our new Gretchy, Ty and I have been taking walks daily with her.
He's so motivated and so comforted by her.
Are days still hard?
Well, day one being back was a pretty rough transition... but day two was a little bit better, and so I'm hopeful that we are settling in well and this helps Ty so much.
We are creating a new routine, and getting back to a scheduled kind of day....
so here are the pictures I promised. Enjoy!
it was a hard day for him-
I just hope things improve for him once he see's all the wonderful dogs.
My sister is getting married tomorrow, I"m the matron of honor, Sarah is flower girl... the girls and I will attend, celebrate... and then we will head off to CCI to join my boys... I do miss them!
But it is the first time in 5 years since I've had alone time with just the girls at our house- life is just really complicated and exhausting sometimes-
But my boy is getting his dog! Cannot wait!
This has been not the greatest week, in fact Monday evening we saw the biggest meltdown we've seen in months... he wasn't backing down, wasn't accepting our help, my face got scratched and hair pulled.. it took both my husband and I to help him
And this week has been lots of fires like that- he's anxious, he's way more jacked up
is this a sign that he may not be able to handle all that is to come over the next few weeks!
Despite getting him into the good zone up until this week of course...
Today, he's already dressed, outside, and I hear hammering and tools!
Maybe that's a good sign?
He's focused on something, he's regulating himself but working with tools, good proprioceptive input as we call it
But not his usual morning nap, as he does 99% of the time.
It tells the story that he's off, he's anxious, but compared to other days this week, he's gotten himself engaged in an activity!
I hope this is a good sign he's preparing himself for what is to come, because after the past few days, I was really starting to doubt if this is going to work out!
But that sucks because we just have to get him through the next few weeks, and then we come home with a beautiful new family member that has a tail and four paws!
It's what he needs so desperately, it's what he will need for his future!
One week from today, he will already have his dog, be able to sleep with his dog, and begin to bond- in one week!
We can do this.... I just need to remind myself of this... we can do it!
We have been through a lot more hell, without an amazing outcome waiting- a service dog!
Dream come true for Brian and I, knowing we are able to get him this gift of a service dog- this gift to help him in his future, this gift of independence, absolute acceptance, a bridge, a connection, truly a most loving companion that will love him and accept him as Brian and I do. Maybe even more- it is a dog you know. That's what makes this entire situation absolutely amazing.
We just have to do everything we can to get him through it- to help him during his moments of debilitating anxiety, and uncontrollable energy, fear, and help keep him calm, organized, and present.
Seems easy, huh??
But we can do this! We will do this, we have one day until he leaves- 2 days until the girls and I go... CCI adventure- Here we come!
My boys will be heading out in 2 short days- the girls and I will leave after my sister's wedding..... a busy busy time-
and in a few short weeks- My Ty will have his trained service companion and it will be the beginning of a whole new way of life- from this point forward for him...
We promised we would never stop fighting for him, we promised we would never give up on him (like so many "advised"), and we will have one more tool that will benefit him so much as he becomes older-
I am so proud of my family- and so proud of him! This is just the beginning of this new chapter!
