Communication Update

It has been a while since I've provided an update on Matthew's communication.  In the day to day, it is hard to see the progress and frustrating too, but when we look back to last year at this time, Matthew had pretty much no verbal capability.  In comparison to that, he's made HUGE strides.

Right now, Matthew has a lot of discernible word approximation (especially if you know the context) and even some words (beyond approximations).  He's had an intelligibility jump recently.  He walks in the house and says something that sounds like "Padme" (our dog).  When you count, he'll say something that sounds like numbers (like 'three').  When we wait at a light, sometimes he'll say "green" and "go" when the light turns.  If you ask him "who loves her baby", he'll respond "mama".  He calls out a semblance of "daddy" to get Darren's attention.  If he wants a snack, he'll say something that sounds like "eat".  Playing his favorite app on the iPod (Peekaboo Barn), he'll say words that sound like "duck" and "owl".  When you ask him whose turn it is, he will say "me" and if someone takes his toy, he will very clearly say "mine" if he wants it back. It is great progress!

This jump, as exciting as it is, still hasn't solved his communication issues though.  He still can't tell us about his day at school-- all I know about his day are the few words written on his form and whatever the teachers tell me when I pick him up.  This is the primary reason I won't let him ride the bus home, even though he handed me a picture of a bus and said "Iwannago".  He still yells at us in a language we can't understand-- I can't even express in words how tired I am of that after 4+ years.  And even more frustrating, he seems to have a word one day and lose it the next.  He has a long way to go.

We are still stressing the total communication idea-- words, gestures, sign and iPad.  Since we don't really know if Matthew will ever have full verbal capabilities (we hope he will!), we are planning as though he won't.  Hope for the best and plan for the worse, as it may be.

Without talking with his teachers or seeing what is going on in the room when I drop off/pick up, this is the only information I would have about Matthew's day at school.  He badly wants to ride the bus, but I just can't be okay with this being the only info I get about his day.  I can't wait till the day he can tell me! (Though that won't always mean that I will be told, as Jackson proved earlier this week when he fell at school and didn't tell me!)

Post Big Green- Week 1

Jackson is getting around pretty well with his walker, though still not able to straighten his leg out fully or walk heel/toe on his left leg because of his weak quad and tight hamstring, caused by having his knee bent in the cast for 6.5 weeks.  His teacher shared with me this morning that Jackson fell in class yesterday by likely putting too much weight on that leg and loosing his balance.  She said you could hear a pin drop afterwards, as the room went silent with everyone concerned about him. He was physically fine but embarrassed.  I know he's ready to be 'recovered' instead of 'recovering'. 

Jackson's first PT appointment was yesterday. I really liked his therapist.  He spoke directly to Jackson (as my only other experience is with Matthew, I was used to answering the questions) and thoroughly explained the issues and recommendations to Jackson in language he could understand.  The therapist gave him 3 stretching and strengthening exercises for homework and added that Jackson should get in the pool as much as possible.  What kid wouldn't like that homework?

So, we went to the pool!

Nice Weekend

This past weekend was near perfect.  Mostly happy and well behaved kids = happy parents.

We started Saturday off at the Austin Zoo for Matthew's very belated birthday experience.  I am normally not a zoo person, but I really loved this zoo. It is an animal sanctuary, meaning the animals there were rescued from one place or another.  All 5 of us had a great time.

We spent a good amount of time watching the Capuchin monkeys crack nuts to eat.

The Zoo was the perfect size for us and we loved the experience.

Can't say we went to the zoo without the requisite animal picture.
Loved that this monkey had a special lovey.

Then, we came home and played with our new bubble machine.  Who doesn't love bubbles?

Afterwards, we enjoyed a nice meal out at an Austin based establishment.  Very nice Saturday.

Sunday was slower but equally as nice with time spent outside (more bubbles and a bit of reading) and a nice dinner out at a different Austin based establishment. 

What a nice weekend!

Different

This was not a topic on my mind as I awoke this morning, but it seems to be a recurring theme today.

This morning, Jackson was physically fine but had an emotionally hard time going to school.  He was nervous and started crying as he and Darren went into the building.  Though he had calmed down and seemed better before Darren left, I worried about Jackson today as he hobbled around on his walker and fielded questions from his friends.  I was relieved when I picked him up this afternoon, as he was a-okay.  I asked him what happened this morning and he said he was nervous about the walker and thought that his friends might laugh at him.  (What really happened:  No one laughed.  Classmates were just curious and seemed content with the explanation that his leg muscles needed time to heal.)

Also today, I read a Facebook post that made me think about differences, perceived and real, and the norms associated with recognizing those differences.  We are taught to not see differences.  Everyone is the same.  But that really isn't the case, and feels totally disingenuous now that I am the mother of Matthew. 

We are all different, some more than others.  It isn't a value judgement.  Difference doesn't mean less, it just means different.  And to teach that we shouldn't recognize difference actually makes it harder for some that are different.  When we try to ignore difference, we often ignore the person that is different as a byproduct.  I have experienced many times someone noticing Matthew's differences and then quickly adverting their eyes. I assumed that they are trying to follow the norm-- ignore the difference-- but that also means they avoided Matthew. 

I am guilty of it.  When Matthew was in a helmet (3 years ago!), we were going to an orthotics firm that fitted prostheses.  A man came in to the store in a wheelchair with his prosthetic leg across his lap.  I remember being nervous that Alyssa (age 5) or Jackson (age 3) might say something 'inappropriate'.  I hadn't prepared them.  I adverted my eyes as not to stare at the man with the leg across his lap, but Jackson said "that man needs to get his leg fixed!".  I was a bit embarrassed at the time, but now believe there was nothing 'inappropriate' about what Jackson said, or that he acknowledged there was difference. He wasn't being unkind at all, he was acknowledging the person before him.  I avoided the person as to not acknowledge the difference, while he saw the person. 

I know many people don't know what to say, or what to ask, or how to acknowledge difference without feeling like they are breaking a norm, or passing judgement.  There is a fine line. But as the mother to Matthew-- one of the uniquest people I know of in the world-- my advice is don't look away.  You can acknowledge the difference. Ask questions.  Make observations.  See the person.

It is perfectly okay for someone to notice Matthew's hands and ask how he holds a pencil, or state that he only has 4 fingers and isn't that cool!  It is okay to notice (and say) he doesn't talk like a 4 year old, but he seems to get his point across.   It is perfectly alright to ask, does Matthew have a diagnosis? It means you saw Matthew.  I am happy that you saw him and I am more than happy to talk about all of the unique, awesomeness that is Matthew. 

I vividly remember the day of Matthew's birth, telling family and friends that he was born without thumbs. (Oh, if only that was the biggest concern!) I remember crying to my dad, saying that 'kids will make fun of him'.  And my dad's most comforting words (paraphrased)-- "Kids may make fun of him, but it will be okay.  I was made fun when I was a kid because I wore glasses. Everyone is 'different' in some way."

Everyone is different. 
There is great irony that we want to fit in AND stand out.

I know that some may worry that acknowledging differences may lead to bullying. I fear that in time we may learn all too well about that, but my gut feeling is that there is a big distinction between acknowledging difference (without judgement) and being mean/ spiteful/or cruel about differences.

Big Green- Last Day

Darren signed Jackson's cast as we were walking out the door.

Last picture of 'Big Green'.

Why we can't keep the wheelchair in the house.

Oh, I thought this was the last chapter, but alas, we have 6 more weeks of restrictions.

And the reason for the restrictions. 
Jackson has to gain his strength back so that he can walk.
But the cast is off!

Just An Average Day

Some day, the kids will be older and this will no longer be an average day.  So, today, I am thankful that the kids still love running (and riding) around, playing with Legos, dressing up, and that they still leave toys in unexpected places. 

When I came around the corner this morning, I was surprised by Alyssa and Matthew in costume.

Guido from Cars was hanging out in our bathroom for some reason.

Scored this awesome creation on our neighborhood buy and sell group.
One day I know our kids will outgrow Legos like the boy who sold it, but it is well loved now!

Can't run or walk?  Supposed to use a walker?  Jackson's answer- Okay!  

More Happiness

Although I used to scoff at parents who let their kids set off all the toys at the store, Matthew and I are often at the store when it is pretty deserted and making all the trucks light up and make noise makes him as happy as I've ever seen him.

I love playing games as a family!  Even Matthew was pretty well behaved the last few times.

Spring has definitely sprung here in Austin.  Though the temperatures are still a bit too moderate for me, the roses seem to like it.

When asked what her favorite thing is about Austin, Alyssa answers 'tacos'. 

I saw a kid's shoe on the side of the street the other day in our neighborhood. It made me smile. Matthew hasn't thrown a shoe out of the window since last spring, when we instituted the 'shoes off before windows down' rule.

1 Year Post Op

A year ago this week, Matthew was at Texas Children's recovering from emergency surgery for a bowel obstruction caused by adhesions from a previous surgery.  Not enough time has passed to dull the memory of the days before and days following that surgery. As I flip back in the blog and read about it, I cry fresh tears.  I still vividly remember the fear of watching Matthew's heart rate go lower and lower as I wondered if it would just stop, as the doctors feared it would with his severe chemical imbalance.  Not only do I remember the fear, but also the shock of it.   We thought it was just a stomach bug.  How unexpected that trip to the ER, that surgery and that 12 day hospital stay.  Though it is not in the forefront of my mind very often, I am very aware that the unexpected could be just around the corner.

But, the beauty of that hospital stay was how quickly Matthew went from a shell to his full out self in what seemed like no time flat.  He has been full out ever since!

Time has dulled the big, but still visible scar.

Big Green- Week 5

I should have titled this post "Why I am looking forward to Jackson getting his cast off".  Surprisingly, the reason is only peripherally related to Jackson and his cast. 

Our routine has been upended because of the cast/wheelchair and that is making Matthew a little nutso and me feel full out crazy.  In the mornings that Matthew doesn't have therapy, he and I take Jackson to school by car and then take Jackson in the wheelchair inside to drop off his backpack in his classroom and deposit him with friends in what they call 'the neighborhood' outside of the kinder classrooms.  Not two seconds after Matthew hugs Jackson goodbye, he starts signing 'school' and whining 'i-wanna-o'.  He will often cross his arms defiantly, not willing to take another step out of the 'neighborhood' much less the building.  Sometimes I can coax him (ooo...would you like a snack?  let's go play.  how about we go to the store?), other times it is an all out meltdown as I carry him out of the school as he tries to hit and kick me.  The issue is that Matthew goes to a different school, 2 hours after the big kids start, and he is an unexploded bomb waiting to go off in those 2 hours.  I never know what will set him off.  I am on edge until I drop Matthew off at his school.

The afternoon isn't much better.  Because of the crazy car rider line, we decided the best way to get Jackson in the wheelchair would be to park near the school and remain 'back walkers' at pickup.  Matthew does not like the approximate 1/4 mile walk mostly uphill to get Jackson and usually insists to be carried. Sometimes he is happy being carried, and others, he wholeheartedly makes it the most difficult 1/4 mile ever.  I can't take a stroller, because we have to push Jackson's wheelchair on the way back to the car, with Matthew's 'help', which is really Matthew seeing how fast he can push Jackson down the hill while mommy holds onto the arm rests to slow it down.  Fun times.

On the upside though, at home, we were carrying Jackson around because of the great probability that Matthew would ram the wheelchair into the walls, but last week I had all I could take of that and Darren brought the walker out of the attic so Jackson could get around on his own a bit.  Though Matthew is quite enamoured with the walker, he hasn't freaked out about not getting to play with it as much as I anticipated. Thankfully.

So, I have been counting down-- not days till Jackson gets his cast off-- but number of 'pickups' remaining.  Darren has tried to temper my excitement (4 days!!) by reminding me that Jackson will likely still need to be dropped off and picked up after his cast comes off, at least for a little while, but I am holding out hope that it won't be too much longer! 

Happiness

Jackson proclaimed this his to-do list.  Hugs, lots of hugs.

Ah, Spring in Texas. Loving the bluebonnets throughout the neighborhood and Austin area.

Spoke with the assistant principal about what kindergarten might look like for Matthew.
It sounds like inclusion.  If I had any doubts about moving, this would erase them.

Girl Scout cookie frozen yogurt? Yum!!

Have to love the teeter-totter at the park!

Big Green- 1 Month

Bones need calcium.  Frozen yogurt has calcium.  Therefore, Jackson needs frozen yogurt.  That will be the rationalization for a few more weeks anyway!
 

4+ weeks down, 2 weeks to go! 

Big Green - Week 3

Half way done!  Still amazed at how well Jackson is weathering it.  Really amazed. 

Big green from the thigh down is signed. 
I think Jackson is secretly enjoying feeling special.

I did not handle it near as well this past weekend.  Darren was out of town at a wedding, so I was solo parenting.  I was a bit worried as Jackson is wheelchair bound outside of the house, and in the house, we have to carry him from place to place.  We can't keep the wheelchair inside because Matthew would ram the wheelchair into walls if we kept it in the house.  Adding that fun onto the normal craziness in our household, the weekend was a roller coaster ride. 

(Up)  Thursday night was good and we ended the night watching half of Frozen. 

(Down) Friday morning, every Hoy kid was in tears about something.  Aly was because I wouldn't let her wear her wedding shoes to school.  Jax was that I made him stop his craft so we could get to school on time.  Matt was because he wanted to ride in the bike trailer to school, even though that is definitely not a possibility while Jax is in a cast. 

(Up) Friday night was good and we watched the last half of Frozen.

(Straight)  Saturday morning was so-so.  As Aly, Jax (in limited capacity) and I picked up the house, Matt was in another part of the house destroying all we worked on. 

One of Matthew's 'projects' he completed while we picked up around the house.
Best we can guess is he wanted to emulate his brother.

(Up) We even got out of the house and lunched at Chick Fil A.  Everyone was happy!

(The down turn)  I had a list of stuff to pick up at Target.  How hard could it be to push a cart and the wheelchair?  Matt and Aly can help.  Oh, I was wrong.  Very wrong.  Matt wanted to be in the cart, out of the cart, push Jax into a wall, in the cart, on the cart, etc.  I turn my back to help Jax and Matt takes off with the cart, all over the aisle, almost plowing down small children.  I was the nutso mom with the crazy eyes at Target.  It was no fun at all. 

(A quick up and a quick down)  Quiet time is awesome, unless you open the door to your naked from the waist down child and see this.

The floor was clear when I closed the door on Matthew for quiet time.

(Another large dip down) Saturday evening I had another not so brilliant idea- lets go to the mall.  How many people are at the mall on a Saturday evening? It will get us out and about. Oh, I was so wrong. I can't even explain the horribleness of this idea.

(Slowing down for the stop)  Sunday was pretty quiet as we anxiously awaited D's return! 

3 (plus) weeks down, 3 weeks to go.  After this past weekend, I figure the next 3 weeks should be a breeze!