04 July 2014

Service Dog Update



Long Update on Service Dog Training:

Today is our last day in NC after a full week working with my mentor and his amazing team of trainers who I also get to call my friends. I am sad to be leaving Jack but we will be reunited again in a co
uple of months once he is fully finished with his training.

I had such an great time working with the TK9 team and am so grateful for them putting so much time and effort into this project.

Jacks tracking is really amazing. I was a little rusty  but he was on point each time. I know with full confidence that if Grayson were to get away from us (god forbid) he would be the dog I would want finding him. He is incredibly fast. Once he picks up that scent he is off!

We ran him on hard surfaces (such as a road) and also ran him through fields of tall grass, the woods, and even a tract that started at the front of a building then ran along it, through an opening of trees, through a field and ending behind a shed .. And no matter what was thrown at him he did great!

We worked him in building searches, where we hid Grayson in a room and have Jack take a whiff of the odor from a scent article of Grayson and then go find him and he did it easy as cake. Grayson even enjoyed it. Found it funny!
((I had Grayson in is stroller and just placed him in different rooms of different buildings we used while someone else hung out with him so I could handle Jack)).

We had a little hiccup with the bark alert, as he is not the barking kind. The TK9 trainers have tried and tried and pulled all their tricks out of their hats and I tried the week while I was here and barking as an alert just isn't going to happen. Some dogs just don't do it. Jacks temperament is SO easy going and relaxed which is 200% what we wanted for the companionship of Grayson, that even though he is super playful, he is quiet. But that's OK! We have decided to go with a "re-find" which is just as good, if not better in a sense.

For a bark alert to "work" properly, you have to hope you are in ear shot when the dog alerts or else you may not hear it. With a re-find, it doesn't matter where you are, the dog will come find you once the action has been done that you have taught him to alert you on... For us, it is Grayson trying to open doors on his own and "escape" out of the house. So with the re-find, instead of Jack barking when Grayson tries to open a door, he will run and find me. So if I happen to be in the laundry room, or taking a shower, or somewhere where it may be louder and I not hear the bark from a bark alert.. He will just come find me and I will know something is happening that shouldn't be. This is a skill that a great percentage of SAR (Search and Rescue) dogs are trained to do because the handlers are not always in ear shot for a bark alert.. And well, Jack is essentially trained to be a SAR dog.

So even though we initially were hoping for a bark alert, this new direction we are going in is going to work out just as good and I'm very happy it with! It's going to work out very well for what we are wanting to accomplish.

They will be working hard over the next couple of months to get the re-find in place using another former trainer of TK9 and her children as practice. It's okay that he will "alert" when other children try to get out of a door and then alert another adult other than myself. Here's why: we don't want ANY child in our home, family, friend..etc to escape, so him alerting on any child is a GOOD thing. And his re-find returning to any adult is okay too because it won't always be me at home with him. Zak will be there, our family may be watching him or a babysitter..etc.. So the goal his for him to do a re-find based on any child ---> adult that way he will go find whoever the adult is watching Grayson no matter what, even if I'm not around.. And he will come find me as well even if it's another child that may be over trying to "break away".

We will all then fine tune it with the trainers once he is brought up to us.

Over the next couple of months they will also finish fine tuning the "anchor" as well as his off-leash OB which are both coming along super nicely!

His natural companionship shined through this week while I kept him at my best friends house. Companionship toward Grayson was not "trained" into him, it come naturally for Jack. His temperament sets the stage for it and he shined when paired with Grayson.


Grayson quickly learned that Jack was there for him and that he could lay with him, play with him..etc.. And Jack quickly started to bond with Grayson, following him about, wanting to lay next to him on the floor when Grayson would just be sitting there playing. Jack even napped in the room with Grayson which is great to see already as the goal is to have Jack sleep with Grayson every night.


I could go on and on about Jack and all the great qualities I have already seen in him.. Not just in training but him with Grayson.. But since I have already written a novel, I'll wrap it up.

A giant thank you to Girard (Jerry) Bradshaw and his team of trainers at Tarheel Canine for taking on this project. They have done an amazing job thus far and I know the fully finished Jack will be one heck of a dog!

If you are considering a dog for Service or Working purposes, looking for training for your own dog, or even looking into becoming a trainer..please check out www.tarheelcanine.com I assure you, you will not be disappointed!







13 April 2014

Dear Grayson (4.7.2014 - 4.13.2014)

Dear Grayson,

Well this week was a pretty easy week huh? Instead of just the usual half day on Friday, you had an additional half day on Wednesday as well which meant I got to hang out with you double amounts of fun!

After I picked you up on Wednesday you came with me so I could show you off to our friends at the Pure Barre studio, and as with most everyone who meets you, hearts melted. This was your second time at the studio and you were much more comfortable than last week. You were running across the studio floor over and over/back and forth and then we showed you the work out balls, which were bouncy, oh yes, and you were having so much fun throwing them to me and the instructors! I think you are going to be a super champ at Special Olympics this year!

Thursday, while you were in class, Daddy and I were also at your school for your IEP Meeting. I was really nervous, not because of you, we love you more than you could ever imagine.. I have just heard bad stories about IEP meetings and it's also harder to sit around and talk about the "delays" and "set backs". However, the meeting was wonderful. We keep up with your teachers daily and well, we know you better than anyone, so we know what needs focus on of your development and instead of focusing on the delays and concerns, they focused on what they have been doing this past year, goals for this new school year, and what they are going to do to help you reach those goals.. And that my little man, was up lifting. The team of teachers and therapists that stand behind you are, well, pretty amazing to say the least. They see a world of potential in you and know you just need the right tools and a little time to achieve great things.

I have heard of many parents that go into IEP Meetings ready for war, having to fight to keep certain services and just simply to be heard by the team.. Not your team buddy. They explained everything and the listened with open ears if Daddy and I had questions or wanted to speak up about something. They also added services without us even asking or fighting for it. What did they add? ABA! You know the lady who comes into your class sometimes during the week? Well, she has offered In-Home ABA Therapy for you added into your IEP which means it will be free of charge to us.. I know you may not understand right now, but that truly is priceless.. That therapy is going to help you SO much and I cannot wait to see what you achieve through it!

After the meeting Daddy and I snuck around to the side of the playground to sneak a peek at you playing :) you didn't see us but we sure saw you and as always, love seeing you in that environment with all your friends! Oh! And your teachers told us that during circle when they were singing "We're Going On A Bear Hunt" you actually did one of the motions that they try to teach you and your classmates for the song! That is so awesome! They said that I can come in one day this coming week and they will show me the hand motions so I can do it with you at home...see what I mean? Awesome teachers.

What else this week? Oh, you tried banana... Annnnnd you did not like it at all. Am I surprised? Not in the least because I really really dislike bananas!


Also, you and Daddy were twins for a day which was cute! Annnd you have been enjoying lots of scribbling this week which is awesome! Real scribbling too and without me having to "hand over hand". So proud of you!

Other than all of that we have just been playing outside a lot after school this week because the weather is finally turning warmer! You have been having a lot of fun with your lawnmower as well, it's super cute :) Your allergies are acting up a bit though :-/ hopefully the Claritin starts working on a normal basis because I know exactly how miserable allergies can be and I don't want you to feel that way at all!

You're getting to be quite adventurous outside too, which is exciting and wonderful to see but also pretty scary for Mommy. I know you are trying to be more independent so don't get upset with me when I keep trying to bring you back to a certain area or keep you from going somewhere.. I am just trying to keep you safe so you can continue your adventures for many years to come!

This week coming up is a 4 day school week as Friday starts your very first ever Spring Break! We will be going to Texas to visit family there and have a big belated family birthday party for you.. Yep that's right, you will have had TWO birthday parties this year!

Time for Mommy to wrap this up..Here's to another great week little man!

I love you -to the monster star and back...

Love,

Mommy 



"Dear Grayson"

Hi Everyone,

Notice any new changes to the blog? Yep, just about everything!

As you can see I have been pretty inactive on here for awhile so I am changing it up a bit.

I have decided to rename this blog as "Dear Grayson" where I will be writing a blog post once a week as if I am writing to Grayson. The post will be pretty lengthy since 1. I am "recapping" an entire week and 2. I write a lot...always...plain and simple.

I apologize for not keeping up with this page since I created the FB Page but I hope you will enjoy the new changes and begin following along again!

-Emily

25 December 2013

Grayson KICKED A BALL!!!


Quick little EXCITING note:

GRAYSON KICKED A BALL!!!!

This is SO HUGE! So excited and proud!!

BEST CHRISTMAS GIFT EVER!







18 November 2013

Oh how the "What If's" linger...

Yesterday was a bit of a rough day for us here in our Curious little household.

Grayson seemed very touchy in the sense of becoming overloaded quickly and easily. There were several moments of overload to meltdown... you could see it happening... too much going on at one time around him and he just melted down... he would also have moments of tantrums that turned into meltdowns... if he was trying to do something or get something or wanted something and for whatever reason couldn't make it work when or how he wanted it to he would start with a tantrum but then it would quickly go from what most view as a tantrum to a clear meltdown...

I am not sure what set it all off...I have read several other bloggers or parents of SN kiddos or kiddos with ASD talk about changes in behavior or a rise in meltdowns during a full moon...and sure enough... it was a full moon. Once I read about this not too long ago I have tried to pay attention to that pattern and I have actually noticed around the time of the full moon, he does in fact have major meltdowns or an increase in moments of becoming overwhelmed and overloaded.

Not sure if that is in fact what was going on or if he just had an off day, wasn't feeling well.... who knows... all I know is... it was hard and heart breaking.

I tried my best to maintain my composure because me breaking down does not help the situation as I know he is very sensitive to peoples emotions but as the day went on... breaking down just became inevitable ..... I'm only human.... Not superhuman as many try to give me credit for....

Even I have my moments and it's not because he is too much to handle... it's because it is truly heartbreaking... my chest physically hurts in those moments because I just do not know how to help him and I would give anything... anything... to spend 5 minutes inside of his brain and his body to have a better understanding of what his world is really like ...especially what overwhelms him and sets him into a spiral of a meltdown so I can better understand how to help him....

It's hard.... it's so hard.... and it hurts so deeply to not be able to understand what your child needs or what is upsetting/hurting him... you are helpless... and feeling helpless, is one of the worst feelings a parent can have ... it's not fair.

We tried the things that have worked in the past that his OT and his Play Therapist in NC taught me... such as The Wilbarger Protocol.

Which would help but varied in it's "long term" effectiveness...by that I mean... in one instance it would help and he would be okay and happy again for quite some time.... in another instance it would help but only momentarily and within a few minutes he would meltdown again...and in other instances he was just too far into the meltdown or too overwhelmed for it to help at all and almost made him more upset...

We also tried other things that help for him sometimes but then we also had to just let him be and hope he could work through it as I sat there to keep an eye on himself so he didn't hurt himself....

Anyway....

It was a hard day... a day full of going from happy to becoming overwhelmed very quickly, melting down and shutting down..... We ended the day/night nicely though...He snuggled up on the couch with me which helped my heart to feel better for that time being, we snuggled for awhile and then we got him to sleep and he slept through the night without waking up upset or anything...

These days happen very few and far between for us thankfully...

.....He woke up much better today, he had a great morning here at the house and I took him to school and he seemed a-okay...back to his usual self... but Mommy is still not so okay...

Usually the day following days like that are harder than the meltdown day itself for me.... How the heck is that possible? You are probably asking. Well because days like yesterday are a nice slap in the face of a reality reminder if that makes any sense... and then my brain starts going & wheels start turning and I start to think about everything... and I mean everything...and all the "What If's" of his present and future to come....

Now don't get me wrong...I know the reality of Grayson's double diagnosis... I know he may never make the amount of progress as we all hope for or ever catch up to his typically developing peers ....I know that he may very well be under our care for the rest of his life... I know these things on a daily basis ... but it's also easy to set that reality aside most days because he is still SO little and SO young and all the "What If's" of future are not here yet and I try to tell myself daily that anything could change between now (3.5 years old) and 10 years old, 18 years old, 25...30....etc.... so I am able to set reality aside because...we aren't there yet..... but I DO think about the "what if's" and the future..how can I not? But days like yesterday flow into the next day and set in motion all the "what if's" and worries and I become very overwhelmed with emotion because there are no answers..... there is no manual..... there is no certainty ......

Only questions...

Looking down the not so positive path....

How will these meltdowns go when he gets bigger and bigger and stronger and stronger? When he is taller than me and stronger than me... will I be able to help him? As he gets older, will his peers accept him or will he become victim of bullying? What if something terrible happened to me....to me and Zak... We have plans of who would take guardianship... but what if something happened to us further down the road, when he is older, and those set up for guardianship are no longer capable of taking care of a young adult/adult with SN/ASD...what then? What happens when I am in old age and need the help of a caregiver for myself....will they take care of Grayson as well? What if we live long and healthy and die of old age and Grayson is in his 40s and everyone we would trust with him is unable to care for him or passed away themselves....Where would he go? Who would take care of him? Would whomever takes care of him be able to take care of him the way I do? Have the patience that I have? Will he have to go into an adult group home? What if something did happen to us young but whomever he is entrusted too just cannot handle it...Will they send him to a home? How will he be treated there? You hear stories on how great places like that can be for some... and others you hear nightmares.... Will he live the nightmare if he has to go to a home?

I want there to be a potion that I could take ...to where nothing would happen to me so I could live to be a strong and youthful 120 year old just to be able to care for him, be his best friend, his mom, his rock for as long as necessary...

Morbid I know..... but it's reality. It's a reality that most parents shouldn't have to think of... most don't have to think of because they know their children will go to college, marry and have a family of their own and will not need their actual physical care of the rest of their lives... but for those of us in "the club" .... we HAVE to think like that....we have to ask those questions... we have to prepare....

It makes me sick...physically sick... to think all of those thoughts... I am in tears... feeling nauseous and having to take breaks as I type because this is the reality we face ....

Every moment of every day I am his biggest advocate and his biggest fan...I am always learning possible ways to help him in his times of stress and help in ways of his own education and progress developmentally and cognitively .... however.... days like yesterday... and the aftermaths of today are what push me to strive harder not just for Grayson... but for every SN child and family out there who understands the blog post more than they would like to.

There is always hope that things progress and all of these worries become unwarranted and he grows up being capable of living an independent life.... yes there is that hope... and I hold onto that hope so I don't have to live in the constant fear of the "what if's" that follow me around and haunt me so.


14 November 2013

Foodie Update

Hey All,

I just wanted to give a quick update because it is pretty exciting for us.... Grayson has been trying a whole bunch of new foods lately!

He usually just wants fish sticks.... however he will eat lots of different snack foods... He will also eat eggs for breakfast and waffles... but for his meals like lunch and dinner... fish sticks has been it really for quite some time... (even for breakfast many days as well)

Noooooooow we have a new list....

Along with his oh so favorite fish sticks he also has eaten for us:

Tortellini
Cheese Pizza
Mac n Cheese
Ravioli
Grilled Cheese
Cheese Quesadilla
Chicken Nuggets
and different flavors of veggie purees! (he likes the ones with peas/pears in the mix best).

He also ate a Candy Cane the other day as well!

We have been implementing "First This - Then This"/"This for That" techniques that his teachers as school use and it has been working out well!

We use a preferred food for the "That" so he First has to take a bite of the new food and then he can have a bite of his preferred food..... this has been working out great for us and am very excited that he have more things that we can make for him!

Go Grayson!

10 November 2013

Eating with a Spoon!

My oh my we are on a roll with the progress stride these past couple of days!

Here is a video of Grayson using a spoon to eat! Eeeek!

This is such a BIG deal! He still has a ways to go but I cannot tell you how excited and proud I am!





09 November 2013

Bursha Brusha Brusha :)

Quick video of Grayson brushing his teeth.

He has always loved the toothbrush... helps ease his need for oral stimulation so getting him to brush his teeth has always been pretty easy... but now he gets out his tooth brush and grabs my hand and places it at the sink to turn on the water and once the water is on he stands on his tip-top-toes and reaches the tooth brush under the water and then goes about brushing his teeth :)

So smart :)

Proud Momma.





28 September 2013

Team Grayson!


Today I finally finished the capes I have been working on for the Walk Now for Autism Speaks Greater Boston 2013.

Usually each team makes shirts...but since we are big into superheros lately I decided what better way to show our spirit than with our very own capes!

Holy smokes was this a lot of work though. Up every night until 2-3am as each cape took 2-3 hours to make! 

I am glad I did it though and am excited to sport them with our team in just a few days! 



27 September 2013

Rough Day Today

Today has not been the best day for myself and Grayson...

It's heartbreaking when you can't simply communicate to your child and he cannot communicate clearly with you about what is upsetting him and I know he is sensing my own stress from the day which isn't helping... 

Heading home to try to just relax with my little man and play outside with him to try to get things back on a positive track so neither of us are so overwhelmed  

.Breathe.