Pepsi? Really????

Since we are at ChildServe 3 times a week (2 of those days I sit in the waiting room with the little boys) we’ve gotten to know some of the parents and kids that are there at the same time we are. 

On Mondays, the waiting room is usually packed but there is one little boy who stands out to me.  His name is Harold (I know. Let’s hope it’s a family name).  Harold is probably 4 and is obviously autistic.  He is nonverbal and pretty out of control.  He runs everywhere and his mom has a really hard time keeping up with him.  Today in particular, Harold came running into the waiting room at full speed and took a toy from Liam.  Liam just looked at him not sure what to do.  His mom apologized and handed the toy back.  No big deal.  Harold then went over to a wall and proceeded to bang his head against it several times.  This is nothing new, we’ve seen it before.  It’s an ism and probably helps him feel better.  His mom tried to stop him which made him frustrated and bang even harder.  When she couldn’t get him to stop, she asked him if he wanted to get a Pepsi.  I wish I could have seen my expression because I’m pretty sure my eyes got big and possibly my jaw dropped a little.  Are you serious, lady?  This kid obviously has trouble controlling his body and already has tons of energy and you’re offering him a Pepsi?  That is the LAST thing a child with autism needs-well, any kid for that matter (but I’ll keep the kids and soda rant to myself).

Sure enough, they came into the waiting room a few minutes later with Harold toting a Pepsi.  Wow.  I cannot begin to count the number of times I’ve encountered families at ChildServe that I so desperately wanted to tell about Son-Rise.   Honestly though, I feel like it’s not my place.  Not yet anyway.  Maybe the longer we’re there and the better we get to know Harold and his mom (and some other families) I will feel like I can talk about it.  Until then, Harold will just keep chugging his Pepsis.

In Search of a Miracle

This trailer was sent to me (thanks Jules!) and it seems to be a beautiful picture of just how far one family goes to try to heal their autistic son.

At one point in this clip the dad even says that they decided to do something crazy-they went halfway around the world in search of a miracle.  Often times that’s exactly how I feel.   We came home from the Autism Institute and decided to pull Gavin out of school and instead, stick him in a room for about 20 hours a week.  Crazy.  But you know what?  This crazy idea that two kooky hippies had in the 70’s is WORKING.  It is UNBELIEVABLE the transformation we’ve seen in Gavin this past month.  He has SO much more independent thought and he’s now talking non-stop!  He’s looping a lot more (back and forth conversation) and has been so much better at answering questions.   IT’S ONLY BEEN A MONTH and I CANNOT wait to see what he will be like in 2 months!!!

Headlines and Updates

A lot has been going on in the world of autism these days.

• President Obama has recently signed a new plan for $1 billion to go to autism research over the next 8 years.  That’s the largest grant in American history to date!
• A new study reported this month in Neurotoxicology found developmental delays and brain damage in baby monkeys given thimerasol (mercury preservative).  Thimerasol is found in the flu vaccine (don’t get one!), the new H1N1 vaccine, and 5 childhood vaccines.  The CDC removed all thimerasol from other vaccines  starting in 1991, but it still remains in 5 today. 
• A new study out October 5th (ironically Gav’s birthday) now reports that 1 in 91 children are diagnosed with autism-1 in every 58 boys.  Wow.

On the home front:

• We just completed our 2nd week of our Son-Rise program and it’s going really well!  We logged about 14 hours the first week and 17 hours this past week.  We have amazing volunteers and Gavin has really enjoyed his time with each of them.  After spending time in the playroom, we’ve noticed a signficant increase in language and eye contact.  Yay!  (His speech therapist even commented on the increase after Gav’s 2nd day in the playroom!)
• Gavin also started occupational therapy this past week.  He spends 45 minutes on Tuesdays with Miss Becky, and then on Thursdays his speech and OT times are combined and his therapists “co-treat” him at the same time.  (Needless to say, he’s exhausted when he’s done).
• He starts physical therapy on the 19th as well as art therapy!  I’m so excited about art.  There’s a sweet girl at our church who will be coming to our house twice a month to do art with both boys.This will be a great opportunity for him (and Liam!) to work on fine motor skills, listening, following directions, and attention span.  Shoud be really fun!
• I’m also in the process of researching music therapy.  The kid could listen to music ALL day if I let him.  He has perfect pitch, has an amazing memory for music, and I think he would just plain love it.  His new favorite thing is playing notes on the piano and listening to the different sounds they make.  

While we have an extremely busy schedule with playroom time and therapy, we’ve actually slowed down quite a bit.  We have to be home more while Gav is doing his thing with our volunteers, so while it seems busy on the calendar, it’s been nice to stay home and be more calm.  It’s much easier to say no to things that steal our time and there’s no rushing around to get him to and from school and clear out to ChildServe after school.  So far so good!

Thomas the Train

Last weekend we took the boys to Boone ride Thomas THE Train!!!  We didn’t tell them we were going until we were in the car on the way (they have trouble eating, sleeping……standing still when something exciting is about to happen). 

Our train wasn’t scheduled to depart until 10am and we were told to arrive at least an hour before.  Fortunately they had fun stuff for the kids to do while we waited, but the boys ONLY wanted to ride Thomas. 

The guys with Sir Topham Hatt.  Liam was not having any of that.  Gav thought he was way cool though!

There’s a smile finally!

The ride was only 25 minutes (we all thought it could have been longer) but it was still tons of fun!  (Only problem is, now the boys think Thomas lives at that “park” and they keep asking to go back to where Thomas lives.  Maybe next year!)

Happy 5th Birthday G-Love!

Gavin Walker turned 5 today.  Wow.  Every time I think about that I nearly burst into tears.  Before kids you always hear about how fast the time goes, yada yada yada, but until you have children of your own do you fully understand how fast time REALLY does go (and it keeps going faster). 

Seriously, it was just yesterday that he was a chubby little peanut sleeping peacefully on my chest (he never was a good napper unless I held him) and now he’s all boy-all LOUD, WONDERFUL, SWEET, CARING, FUNNY boy. 

Happy Birthday G-Love!  Mommy loves you more than you will ever know.  Now please stop getting bigger and stay my little bubs.

 

 

“School”

So I know you’re all sitting on pins and needles wondering how our first day of our son-rise program went.    Well……….we’ve decided to postpone it for another week.  Gavin came down with a cold sometime last week which has him all out of sorts (always does when he gets sick), and our playroom is not quite ready.   Plus, we have a very busy weekend starting Thursday.  The lovely Saldanhas are taking the boys overnight, we’re “camping” with some friends on Friday night, and THOMAS is on Saturday!! (A lot of crazy fun for an easily overstimulated boy).  With everything going on, we decided that next Monday is best. 

BUT, we did have great training sessions last week with our volunteers.  I have to say we have such and AMAZING group of people willing to help us.  Gav’s going to be “typical” in no time! We are all very excited to begin!

And yesterday, I got a call from ChildServe that Gav is finally off the OT waiting list!!  He starts on October 6th (the day after his birthday) and it will be the 45 minute time slot immediately following his speech therapy.  I was very glad that we won’t have another trip to make since we’ll already be there those days.  (PT is still yet to be determined). 

So, we’re taking this week to tie up some loose ends, set up the playroom, finish shopping for new toys/materials for school, get schedules organized, and most importantly, get healthy again!

An Apology

Dear Neighbors (and random Passers-by)

I would like to apologize for all the noise, screaming, drumming, crying, pounding, etc that comes out of our home between the hours of 6:30am and 8 o’clock pm.    I am grateful (as should you) that we live on three lots, otherwise, it would be that much louder for you.  

I would especially like to apologize for the “incident” that occured this morning before you (without children) were awake.   I had left my children in the extremely capable hands of their father so I could take a shower (uninterrupted) before church.  About 2 minutes into my shower, I heard all 3 children crying, and their father’s stern “discipline” voice.  It appears that my oldest pushed the middle onto the babe lying peacefully and happily on the floor.   The eldest has space issues and uses pushing instead of words to tell others to get out of his way.  The middle couldn’t help but fall on the youngest because he is ALWAYS right where the youngest is (he likes to “help” with all things baby related).

So, when you hear all these horrible sounds eminating from our home on a daily basis, please do not call DHS or the police.  The children are in no way being tortured, hurt, beaten, or anything else that those sounds may convey.   One of my children (or maybe both) does not know what acceptable indoor volume means, one is VERY dramatic about everything, one HAS to cry to communicate, and the father has been “using loud tools“.

I would be more than happy to buy you some earplugs, I’ve thought of wearing them myself.  And if your home goes up for sale, I will in no way be offended.  Please just warn the new occupants. 

My sincerest apologies,                                                                                                                                                                                                           Emily

Carly Fleischmann Is My Hero

My friend Bethany turned me on to this blog where this AMAZING video was posted.  I had heard about Carly Fleischmann last year but had never seen her or heard her whole story.  She is an incredible young girl with severe autism who was non-verbal until she started typing on her family’s computer.   Give yourself 10 minutes to watch this video.   Her words brought tears to my eyes.  She is beautiful inside and out. 

This gives me such GREAT hope for little Gavin.  He does not have nearly the limitations Carly has, but like Carly, he struggles with ways to communicate.  He so desperately wants us to understand and I know that through his Son-Rise program he will begin to be able to communicate his wants, needs, desires, and dreams.  I can’t wait to hear what he has to say!

One Week and Counting

We have officially one week before we start Gavin’s Son-Rise program!!  So…..this week is FULL of planning and prep work.  We are hosting a training for all our volunteers on Saturday, and throwing in a couple of other training sessions this week for those that can’t make in on the 19th.   I honestly feel like I could use a refresher course, so I’m getting nervous about trying to teach other people the methods.  (I guess that’s what I have Josh for-he’s the one who LOVES public speaking!) 

He and I spent the better part of last night evaluating Gavin so we can set very specific program goals for him.  That was so hard!   He is SO different in our home and with close friends and family than he is in the outside world.   At the end of the eval, we determined he is very much a stage 3 Son-Riser, meaning he’s mastered about half of the stages and still has two stages to go. 

My goal this week is to get his playroom/focus room all set up.  It requires me to go through all his toys and organize them into categories (yay!) and gather materials for activities (crafty things, bubbles, etc).  One of Gav’s biggest “play” issues is that he doesn’t pretend play very well.  He’s been doing a lot more of it lately, but still not much.  I am looking to gather costumes/play clothes for him to use in imaginitive play.  I’ve been checking out craigslist, but if anyone has any boy costumes/clothes we can borrow or have, please let me know! 

On top of everything else, Gavin also had a physical therapy evaluation today at ChildServe.  We are STILL on the waiting list for occupational therapy and his speech therapist suggested that we try PT while we wait for OT.  (Gav lacks muscle tone and avoids situations where he’s required to exert a lot of upper body strength, ie: monkey bars).   So it’s going to be a CRAZY life when he’s going for speech, PT, AND OT.  I’m just glad he loves it there so much.  Again, I can’t say enough about how wonderful everyone at ChildServe has been.  They are all such genuine and caring people.  We have had nothing but positive experiences there.

AND I just purchased tickets to see the ACTUAL Thomas the Train at the Boone Railroad at the end of this month.  Gav’s birthday is October 5th and I thought this would be a fun thing for our family to do since the boys are obsessed with Thomas right now.   We get to take a 25 minute train ride and meet a lot of the characters.  I’m really excited, I just hope Gav thinks it’s fun (and not too loud-he has a thing about loud noises lately).   I think (hope) this will be a nice end to his first official week of Son-Rise.  (And, we are most likely going to call it school because it’s just easier and more familiar to him.  So, if I mention school, that’s what I’m referring to).

I’m off for more prep work!

Brothers!

Gavin and Tate were chillin on my bed the other day while Liam was napping.  I caught some cute pics.  Are they brothers or what!!!  (And yes, my bed is not made).

 Liam LOVES to hold Tate, especially like this……just waiting for the day when he brings him to me.

Pretty sure Liam’s trying to figure out a way off the couch in this picture.