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.

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!

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!

Post by Curiouser & Curiouser.

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.

Post by Curiouser & Curiouser.