Regression

June 22, 2009

Gavin has regressed.  A lot.  I’d say this is probably the most autistic I have ever seen him.  His verbal repetitions are very regular-lots of rote phrases and he won’t let us use his name EVER, he’s been “isming” (stimming) quite a bit, and he now does this thing where he looks at things with his head down or tilted at an angle.  He was starting to do that before we left and I was wondering if it may be time for a vision check  (I have horrible vision and started wearing glasses when I was 6, so it could possibly be his eyesight).   Or, it could just be that he’s been out of sorts all week and this is the result.

It’s not like he didn’t have an absolute fantastic time staying with Grandpa and Grandma or the lovely Saldanhas, but I think that it’s hard to understand what Massachusetts is when you’re 4 AND autistic.  So what if mommy and daddy went to MA.  What the heck is that?  So what if they’ll be back on Saturday.  When’s Saturday?  He struggles with concepts of time so informing him of when we’re coming back means nothing to him either. 

A few days before we left I told the boys what would be happening for the next week and I had begun to notice more repetitious behavior from Gavin starting then……I just didn’t realize it’d get so much worse over the week.  I figured we’d have to detox them from all the fun and excitement of the week and that maybe they’d be a little naughty for a while, but I never counted on this.  It’s really heartbreaking and it makes me want to cry.

We learned so much from the conference that I know we can pull him out of this quickly, but it saddens my heart that he’s crept more inside himself to find comfort in a situation he does not understand and cannot control.  He’ll be ok.  I’ll be ok.  It’s just going to take some time. 

(As a side note to my wonderful mom and sis, there is absolutely nothing you guys could have done differently to prevent this!  Please don’t blame yourselves!)

Hello to all of Emily’s faithful readers!  Josh here.  I just wanted to give you some of my thoughts/observations from this week’s conference in bullet form.  (I will surely spill out more fully formed thoughts on you when we get home, hope you are ready)

~Emily and I have both found it very interesting to attend a “secular” conference.  We have both been to more christian conferences than we can count, but this is quite different.  I am thankful for hope.  Many of these people have had none until this week, it is nice to know the author of Hope (and no I don’t mean Barack).

~I have long held the opinion that Emily is the most beautiful pregnant woman in the history of pregnant women.  It was nice to have that confirmed by the numerous women who have come up and commented the same this week.

~How most schools/institutions/people approach Autism and treating autism is backwards.  A lot in our lives will change when we come home and some may not understand, but someday we are going to look back and say, “remember when Gavin was autistic?”

~Both Emily and I have commented how we want to help other families affected by autism.  I just happen to be reading a book recommended by a good friend called “Irresistible Revolution” by Shane Claiborne.  I don’t think it is coincidence that this book has been in my hands at this precise moment 🙂

~God gave me and awesome opportunity to be a light for him that is too long for me to write about here, but I’ll be happy to tell you about if you ask.

~I have talked to everyone from single moms to couples who have NO support system.  Because of distance or just having no family or friends who are able or willing to be a support to them.  I AM SO THANKFUL for our family and friends, you who are reading this, who have given us so much love, acceptance, & support.  We don’t take you for granted!

~There are two people in particular who deserve their own bullet point for this one.  Mom, I cannot ever put into words what your endless love, patience, prayers, acts of service, & joy have meant to us.  Katie, here they call it the “3 E’s” here.  Energy, Excitement, Enthusiasm, and it is one of the key things we need to have w/ everything we do in order to recover our kids from autism………and God gave us Katie 🙂   There are so many of this programs principles that our family already does, just by nature!

Just Pretty Pictures

June 17, 2009

Ok, so I gave up trying to keep up with the days and all that we’ve been learning.  I’ll add bits and pieces here and there, but there really hasn’t been a lot of down time to process things yet, so I’m having trouble keeping up with the blogs.  BUT, here are some pics we’ve taken so you can get a better idea of why I could totally live in MA!

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 A view from one of our meeting houses.  We are surrounded by trees and mountains and gorgeousness in every direction.

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This is the main house on campus.  The offices are here and I think people live here as well.  I actually haven’t been inside, but OH MY!

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Right outside the house we’re staying in-it’s the most peaceful sound in the world!

DSCF3108The house we’re staying in with about 10 other people.

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 I thought this was really cool.  Every child that is represented this week has their picture on the wall (there’s another wall of pictures on the opposite side of the room).  It’s so fun to meet the parents and actually get to see the child we’re talking about all week.  Precious!  (There’s one mom here who has 3 children on the spectrum!)

 And last, this is where Josh and I have decided to send our boys to high school.

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The Berkshire School.  Doesn’t it just look expensive????   $42,500/per child a year expensive!  BUT, if we don’t board the boys, then it’s only $32,000 a year.  Not bad (but an EXTREMELY long commute!)  😉

 

I have to start off by saying my brain feels like mush.  We had class from 8:30-4:30 all day yesterday in which they crammed a TON of stuff in our heads.  I will try to verbalize some of the cool things we learned or were reminded of but I know I won’t be able to cover it all.

One of the biggest reminders for me was that it’s all about attitude.   Gavin is the same today as he was when he was diagnosed.  He hasn’t changed (well, he’s grown and developed by leaps and bounds).  What I’m talking about is his personality…who HE is as a person hasn’t changed.  Autism doesn’t define who he is.  He’s Gavin.  Wonderful, sweet, loving, charming Gavin.  I can’t be worried about Gavin tomorrow or Gavin in the future.  I have to live IN THE NOW with him. 

The biggest thing I can do for Gavin right now is change how I look at things.  All things….all situations.  I cannot let a situation control me.  I must be in control of how I react to a situation (this goes so much farther than just how I react to Gavin).  What I believe about a situation will determine how I react to it.  If I’m always looking at something negatively (which I tend to do) then I will react negatively in most cases (and regret it later!)  I can’t change what happens, but I can most definitely change how I react.  Even though I know all this, it’s great to get a gentle reminder!

Not to bore you with conference notes, some other interesting tid bits:      

  • It’s FREEZING here!  We did not pack well (surprising, since it seems like we brought everything we own!)
  • Most of the people here have one child.  I find this extremely interesting.  Because their firstborn has autism, they decided not to have any more children.  I find that sad and kind of depressing.  What if we had stopped at Gavin? 
  • There are 30 states and 13 countries(!) represented at this conference.  There are a total of 106 people and it has been amazing getting to know people from other places who are going through the same things we do with Gavin.  It’s very empowering and inspiring!

That’s all for now.  My brain is tired……and I’m hungry.                      

(The boys are doing great…….hope you’re following what they’re up to!)

Day 1

June 15, 2009

We’re here!  Massachusetts is BEAUTIFUL and exactly what I pictured.  We started off a bit rough at 4:30am yesterday morning (we Hullings have a slight tendency to overpack, thus costing us $90!! extra to check our giant bag).   So, we didn’t exactly start the morning off right, but our flights were quick, on-time and we arrived in Connecticut around lunch time. 

It’s so fun being in another city.  Fun…..and kind of scary.  We picked up our rental car and asked the guy where a good place to eat was that wasn’t a chain.  “Uh, there’s pizza, a McDonalds, a Burger King, a Friendlys, and there’s a good place where you can get wine and stuff like that.”   Oh. Ok.  Gee thanks for the ideas.  So, we headed out and decided to find our own way.  Problem is, we ended up heading towards downtown.  For one thing, nothing was open on a Sunday afternoon downtown, and as in most cities, downtown tends to not be in the best parts of town. 

We were the ONLY white people “cruising” in downtown Hartford and we saw a couple of really funny things.  For one thing, the sign on the back of the Good Humor Ice Cream truck said “Watch Children.”  Not “Watch FOR Children” just “Watch Children”.   That’s more than creepy.  Right after the ice cream truck we drove past a clothing store called “It’s a Gee THANG”.  Think we were in the wrong part of town?  🙂  That’s when Josh decided to head west.  No matter what city you’re in, there’s always new development out west, right?  We ended up finding a place to eat and a fun outdoor mall with lots of shops we don’t have in Des Moines.  Yay! 

After lunch we drove the GORGEOUS scenic route to Sheffield, MA where the Autism Institute is located.  OH MY WORD do I want to live here!  (We haven’t had a chance to take pictures yet, but I’m planning to between sessions today so hopefully I’ll get them posted tonight). We arrived to a very friendly welcome at the Institute around dinner time last night, got checked into our room, and found a fun little town not too far away that reminds me of Holland, MI (woo woo!) 

We’ve already met so many great people and it’s been really fun to talk about our kids.  Everyone’s pulling out pictures and sharing success stories.  It’s great to be in an enviroment of people who totally get it.  We have a full schedule of classes today and I’m looking forward to jumping in with both feet!

Whew! It’s been a crazy last few days gearing up for our trip tonight!!!  It’s so hard to believe that it’s finally here.  (Actually, where did this whole year go?)  We’ve been busy doing laundry, packing, repacking, making lists, buying groceries (GF for Grandma’s house), cleaning, and finishing up projects.   I think we’re ready!! 

Josh and I will be taking the boys to my parents’ house tonight after dinner and then we’ll head to Omaha to hang out with some friends overnight.  Our flight leaves at 5AM(!!) out of Omaha tomorrow.  We should arrive in MA by late afternoon.  The conference doesn’t start until Monday morning, so we’ll have a nice quiet evening to relax and unwind.  I’m looking forward to having nothing to do but rest (Josh and I have never been on a vacation without the boys before-I’m going to miss them terribly!)

I’m hoping to post a little every day to keep you updated on what we’re learning and you can follow what the boys are up to here.

I’d also like to say a HUGE THANKS to everyone that made this trip possible!

Oh Liam

June 3, 2009

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I have to start off this post by saying that Liam is really a 10 year old trapped inside a very small two year old body.  He is extremely intelligent and conversational.  He picks up on EVERYTHING (sometimes that’s not a good thing!) and is constantly trying to figure out the world we live in.

Liam came wandering into the office tonight and here’s how a conversation between us went: Me: “Hey Liam, watcha doing? ”  Liam: “I got plans.”

WHAT?????!!!  Are you kidding me?  What two year old says that?  The funniest thing is that he says stuff like that ALL the time.  This is an every day thing around our house.   I cannot wait (well, I can) to hear the things he comes up with as he gets older!  (He also told me a few days ago that when he grows up he’s going to get a penguin.  Good luck with that one buddy!)

Yesterday was Gavin’s last day at Walnut Street School.  When I picked him up yesterday I was pretty choked up, as were his teachers-it was so sweet.  I made sure we took pictures so he could remember them, especially Miss Candice.

Somewhere along the line this year, Gavin developed a HUGE crush on Miss Candice.  Every morning when Josh would drop him off, Gav would search the lobby for her, his face lighting up like crazy when he saw her.  If she was not yet in the lobby, he would wander around aimlessly not knowing what to do.  Whenever she was down there, he’d snuggle up on the seat next to her and just grin up at her.  Hilarious!  (In Gav’s defense, Miss Candice is super cute and one of the sweetest people I’ve ever met-good choice Gav!)

Here are the shots we took yesterday:

miss michelle This is Miss Michelle and one of Gavin’s classmates, Willy.  Michelle was Gavin’s lead teacher that he’s had for the last two years.  She is so sweet and is always smiling.  It takes a very special person to work with a classroom of autistic boys all day.  She’s the greatest!

miss donnaThis is Miss Donna.  She was one of the associate teachers.  Also a very sweet, grandmotherly lady.  Last year we made the connection that Josh was friends with her sons in high school and played several sports with them.  She’s good people.  🙂

miss trudyAnd this is Miss Trudy, another associate teacher.  Gavin and Liam both talk non-stop about Miss Trudy (she always paid extra attention to Liam, so of course he loves her!).  She always had a kind word to say to Gavin.   We couldn’t have chosen better teachers for his pre-K experience!

miss candaceAnd here is Miss Candice (check out Gavin’s face!)  Can you tell this boy has a crush?  It’s so funny!  Candice wasn’t even one of his teachers this year, but her love of all the kids really made her stand out.  She was never not smiling.

We are going to miss these wonderful women and are praying hard for his teachers and new friends next year. (Oh, and I found out yesterday that at least one of the boys from Walnut Street will be in his class this fall-at least there will be one familiar face).