The Paraphernalia

Earlier today, I was thinking of all of the paraphernalia that has come through our house because of Matthew-- Kinesio tape to help correct the way he laid his hands when he was a newborn, the helmet to protect his little head after craniosynostosis surgery, the braces for his feet to help him stand before he could walk, and the walker that helped him with his first steps.  All of these things have come and gone and are now distant memories in our past.  They were point-in-time tools to help Matthew get to where he needed to go.

I am hoping that is what the iPad is--  a point in time piece of equipment that has come into our house for a particular need (help Matthew communicate) that will one day be a distant memory (as he talks our ear off, I pray). 

We are very thankful for our friends, Matt and Becca, whose iPad made this a reasonable experiment instead of an outlandish one.  We have a long way to go before Matthew is proficient at the communication application, but we are excited about the prospect.  It is a very cool technology that has given many kids a 'voice'.  (Click here to watch a long, but very good 60 Minutes piece about the tool.  It made me cry.)

In addition to the application, we have increased our emphasis on sign.  With that, Matthew has been signing a bit more, telling me many times this week that "I go" (verbal) to "school" (signed).  Pretty awesome.  And since we have been concentrating on the total communication framework, we feel as though Matthew has stepped his verbalization up a notch.  We half jokingly say that if we knew shelling out the $225 dollars on the iPad application was all it would take, we would have done it a long time ago! 

I hope and pray this is all just a point in time and one day, I'll look back and wonder why I was so worried.  I have hope because it has happened just that way with so many things!

Matthew LOVES Jackson,
and doesn't have to say it in words.

"Ice" Day

So, with two sequential posts about the kids being out of school for snow and ice, you'd think we just had a cold snap and a long period of being indoors.  Not really.  Friday was a snow day.  Surprisingly, the snow and ice actually stuck around until Saturday morning though!  Saturday warmed up. Sunday was over 70 degrees, which was perfect for Alyssa's girl scout hike.  Monday got colder and this morning, ice. 

I had mentally prepared myself for the kids to be off school today when I saw the forecast over the weekend.  But, I checked at 5am this morning and the school district still said school as usual.  I watched the weather and news at 6am, which was reporting ice and hazardous road conditions, but school district still said school as usual.  I woke the kids at 6:30 am and moved them through our morning routine to head out the door between 7:10-7:15.  At 7:02, the news broke that school would be delayed.  I was annoyed, as when I originally envisioned the delay or day off, I imagined Hoy children snuggled in the bed watching tv this morning.  Instead, everyone was up and ready, with shoes on and all! 

So, they ate and watched some tv and just as I was thinking I needed to start to prepare them for the shortened school day, the call came that school was canceled.  I understand the school district's reluctance to make the call, but this seemingly just-in-time decision making drives me a little batty.  I am a planner! 

Anyway, this is the kind of day I wished Matthew would mindlessly watch hours and hours of tv or read books.  Alyssa and Jackson are perfectly content, but Matthew's been a little crazy today.  I debated letting him ride his tricycle in the house, but that seems like a bad precedence. We will have to figure out something else for him to do. And hopefully this will be the last bad weather day for the year!

No joke- ice!

The kids watching some TV. 

"Snow" Day

Last night and this morning, we got a sprinkling of ice and snow here in Austin.  Therefore, no school today.  Oh, how I wish it had just been a 2 hour school delay.  It will all melt away by midday (and it is supposed to be 70+ degrees by Sunday!).  Chicago family and friends- feel free to openly mock us. 

Our front walkway.
Again, feel free to mock.

Alyssa and Jackson chipping ice from the picnic table.

All 3 kids using kitchen spoons to pick at the ice.

Randomness

Usually I go grocery shopping by myself or with a kid or two.  Monday, I took the 3 kids to the grocery store for the first time since this summer, and I was shocked at how much better it seemed.  Well, what I really thought was "this didn't suck", which loosely translated means "it seems better than before".

Living with Matthew is like playing Charades all of the time, or a similar type game.  Words, plus word approximations, plus signs, plus gestures equals a Matthew want or need.  Sometimes we figure it out and win, others we don't and all lose.

Why does the boys' bedroom smell like feet?  Aren't they too young to stink?

The other day, Alyssa didn't want to finish the sandwich she had made herself for lunch.  She tried to wait us out, but after what felt like a very long time, she acquiesced and ate it. At that moment, about 3 hours away from here, I'm sure my parents smiled without even knowing why.  What comes around does go around.

The kids playing school in the backyard, with the fence serving as the chalkboard.
For a moment I paused wondering if the chalk would mess up the stain,
but then I remembered they are only young once and it is just a fence.

MLK Day

One of my favorite MLK quotes.  Seemed so fitting for Matthew.

Still or Again?

On Tuesday, Matthew had drainage out of his ear.  That's probably not so good, given he doesn't have ear tubes.  But it seemed to stop, so I didn't think too much about it.  Then yesterday, he started having a little drainage out of his eye, and a lot of yucky drainage today.  So, this afternoon we saw the pediatrician again.  Not sure if this is yet another ear infection, or the same one from late December that never really cleared up.  Either way, it is probably time to call the ENT to see about getting tubes again.

Hoy Highlights

Nothing big, but these are the highlights of this week, so far, with the Hoy children:

This week, Jackson is 'jellyfish of the week', which means that he's the highlighted student in his class and every day he gets to do something cool.  This weekend, he brought home Ms. Jelly and had to journal about their adventures.  So far this week, he took something for show and tell (the only time they do that, and of course he chose a Lego creation), the class listened to his favorite song (Dance Kung Fu by Imagination Movers), and he presented his journal and a poster about himself.  Tomorrow, I'll read one of his favorite books to the class (Cloudy with a Chance of Meatballs) and Friday, he'll present a work of art.  It is a fun week for him and I love the picture his teacher texted me!

Jackson presenting his journal about his weekend with Ms. Jelly

Jackson and Ms. Jelly

Lately, Matthew's really been into books, coinciding with his increased attention span, I'm sure!  I read 2 books to him the other night and he asked me to read them again.  I was shocked he sat to listen to the retelling as well.  It was a highlight of my day!

This is currently Matthew's favorite book.

Since the new year, Alyssa and I have been running together.  We are starting slowly but working up to a 5k this Spring.  She is such a trooper, always up for it and never complaining.  I'm really enjoying it and hope this is something we will continue to do together!

Soon her shoes will be as big as mine!

Giving 'Voice'

Though we LOVE Matthew's half a dozen words, and the fact that he tries so hard to speak, it is time to find something else to help him communicate.

Last week, I freaked out thinking about all of the alternative communication options for Matthew.  After that initial freak out, a plan (of sorts) was born.

First, I requested an assistive technology evaluation for Matthew through the school district.  I didn't know who to ask, but I talked to the diagnostician who I worked with originally when we moved, and she was wonderful!  His teachers and therapists at school agree it is time.  So, I don't know what will come out of it, but that is in the works.

Next, I signed up for another semester of sign language class.  While we were working with Matthew on sign before he had his 'verbal explosion' this summer, he had picked up roughly a couple of dozen signs.  I had stopped classes this summer and didn't pick them back up for the Fall, thinking that Matthew was on the verge of talking.  With that assumption, we signed with him less and less too and he lost all but a handful of signs.  So, I head back to class tonight and we are making a more pointed effort to pair signs and spoken word.

As well, Matthew's private speech therapist has started working with him using pictures to help him communicate, but not quite PECS (for those of you who know what that is) yet.

Finally, I heard through many special needs sites and posts on Facebook that the iPad is the way to go for communication technology. There seems to be one application that is the gold standard, but it is only available on Apple, not Android.  I hesitated on pursuing this option because it is the most expensive option.  If I knew it would work, money wouldn't be a concern, but $500+ for the ipad and $200+ for the app seems like a pricey experiment.  I surfed secondary sites with no luck of finding a much lower priced option.  Still wanting to try everything, I posted on my Facebook wall and many of my friends were willing to help search or offer additional suggestions, and one of my dear friends even had an iPad for us. (Thank you, Matt!)  I sat at my computer screen looking at that post, and was reminded how very lucky we are that we have the friends and family we do. This journey would be much harder without them.  So, we'll be able to try that technology with Matthew soon.

Our best guess is that there isn't ONE answer, but a combination of answers that will be best for Matthew.   Hopefully we find the right mix to give 'voice' to our sweet baby Matthew.

Simultaneous Emotions

One of the most awing things about being Matthew's mom is that I can be simultaneously frustrated with him (like when he threw a hissy fit this morning), confused by him (because he wanted to take Jackson's poster to therapy--why?!?), proud of him (even his therapist mentioned his increasing attention span today), concerned for him (please talk), thankful for him (more on that below), and totally in love with him (how could I not be?). 

Today, Matthew wore this shirt for the first time. It has to be my all time favorite shirt. (In case you can't read it, it says "Gimme a High Four" with Mickey Mouse's 4 fingered hand on it.)  A friend of a friend bought it for Matthew years ago on their trip to Disney World (Thank you, Charlotte!).  Now, he is big enough to wear it. I look at him in that shirt and marvel.  He is big enough and old enough to wear that shirt that seemed so huge and I feared possibly improbable that he would ever be old enough to fit in it.  And here he is in it! (This is the 'thankful' part of the simultaneous emotions.)

Unspecified Hate

We don't use the word "hate" in our house, preferring terms like 'dislike' and 'despise', but I'm going to use that word copious amounts in this post. Please don't rat me out to Alyssa or Jackson.
 
I recently saw someone post on Facebook that 'some days, I hate Autism'.  I totally understand their sentiment. 

I don't have a title, or a name, to hang my hate on.  I can't hate Matthew's chromosomes-- that is way too personal and feels like I'm saying I hate Matthew, which is just wrong.  I can't hate Matthew's unnamed diagnosis- otherwise known as 4dup25q34.2q--that is just too obscure.  I can't hate Matthew's uniquenesses--they are intimately him. 

So, some days, I just have some 'unspecified' hatred for the hand that Matthew has been dealt. 
 
I hate that Matthew...
 
...wants to talk, but can't.
...has struggles because of his lack of thumbs.
...has kids that sometimes are unkind to him because he is 'different'.
...cries so often, but it is an important part of his communication repertoire.
...knows the inside of the OR, the hospital, and the ER.
...has to spend hours upon hours in therapy when most other kids his age just 'go play' and develop as expected.

I hate that I...

...can't imagine a year down the road for Matthew.
...some days still mourn the loss of 'normal'.
...had thought through a funeral plan for my son as he laid in bed in the ICU.
...am a 'special needs mom', who has that now as part of my identity, not just a title.
...don't feel comfortable meeting new people, because when I casually say "I have an 8 year old, a 6 year old, and an almost 4 year old", I know they envision a life very different than the one we lead.
...feel like I should end this post with how much I love our sweet baby Matthew, but hopefully you already know that and that life isn't all rainbows and sunshine.

Some days, I hate 'unspecified' (and Autism too, for our friends). 

Lovin' Austin

There are many things to love about living in Austin, and these are just a few of ours.

Finding beauty in unexpected places.
This is a mural on the side of an exotic pet store near Matthew's therapists.

The fun tradition of decorating the trees on the side of the road (360) and in our neighborhood during the holidays.
Our neighbor nicknamed them the 'beautifuls'.  Very fitting.

The view. 
This is the view from our patio.
Alyssa took this photo.



The food in Austin.
Yum!

AAC

If I could will Matthew to talk, I would. I can't and he doesn't really, but just because he doesn't say much does not mean he doesn't have a lot to say!! 

Yesterday, I sat in our home office, stared at the computer, and cried.  I spent 3+ hours falling down a bunny hole-- looking for options to help Matthew communicate. I searched on Google, posted on Facebook, looked on Pinterest, read blogs, and wept a little more.   I read about communication boards, picture exchange, augmentative and alternative communication applications, sign language, and so on. I just don't know the best way to help him! 

He understands so much.  I zoned out taking him to school the other day and passed the street for the school.  I told him that I needed to turn around since I passed the street to the school and he laughed.  I wasn't laughing but he was.  He understood!!  He understood it was funny to pass the street to school! 

Every night at dinner prayer, we ask if the kids have anything they'd like to add. Matthew always raises his hand, but we never understand what he says.  Lately all he does is smile and laugh.  I think he is picking up that we just don't understand.  At dinner, the kids answer questions about the school day.  We never know what Matthew's day was like, outside of the few words written on a form by his teachers.  Thinking about it, I get a lump in my throat.  I wish that he could just tell us.

So, that is why I scour the web, looking for anything and everything that might help him, help us know him, help us help him.  We pray we find the right answer, soon.

The Game

Most days, I think the kids are trying to win a game called "who can drive Mom batty the fastest?".  It really is an interesting game if you look at it impartially because there are really no rules or boundaries, and the game is greatly enhanced by the originality and creativity of the participants.

They are pretty divided on who wins, though Matthew probably has a slight lead due to his 3 year old temperament.  Some days I'm the winner because I stay perfectly sane and in control.   That wasn't today.  Alyssa won-- in less than 30 minutes after waking, for her grumpy diatribe and antics, going on about not wanting to eat breakfast.  It was pretty spectacular. 

Thankfully, she was better before being dropped off at school, but I was left hours later wondering 'what in the world?!?'. 

A New Jump

Matthew's in the middle of a developmental jump, which we are very pleased with, though a little part of us is sad that it isn't a verbal one.  His verbal acquisition has been holding steady for a while now-- a few words added here and there, but mostly word approximations that strangers likely wouldn't understand.  Oh well, onto more cheery news--this current leap may seem innocuous for a typical kid, but these are a big deal for Matthew (and us).  

Matthew is now searching out toys to play.  Previously toys were something we (or a therapist) had to take out and help him engage.  Now, he searches out the toys he wants to play with and he plays with them! The toys I thought were destined to never be played with again have new life.  Pretty cool!

Scribbling at his desk is now a favorite pastime for Matthew.  His attention span isn't unlimited but it is dramatically improved and his scribbling is too.  Likely still delayed for fine motor, but amazing 'writing' for a 3 year old without thumbs.

Finally, it was never a brag when I said that Matthew didn't watch tv.  His attention span was about 2 minutes and he never engaged in television or movies.  We learned on the cruise that he isn't up for a movie yet, as he was done about 10 minutes into Planes at the theater on the boat, but in the weeks since we returned, he has watched a bit of tv with us.  We have slowly been watching Return of the Jedi and last night, Matthew was trying to talk like Darth Vader.  So awesome!  Over the holidays, we watched our family favorite, Prep and Landing, and he sat (well, was up and around, but paid attention) for the entire 22 minutes.  It was nice to do it as a family! It gives me hope that some day we will be able to go see a movie as a family.

So, these really aren't milestones on a development chart, but they are pieces of life that seem to be falling into place for Matthew.  They make life just a little bit richer.