CH Daily Notes from BCA 7-28-14

Here are what the daily notes look like, and all the details, from Chase's day while he's at Brown.  They don't miss anything and are constantly updating every detail of his day and interaction while he's there.  It's awesome to see the minor changes from day to day that are actually really BIG! :)

CH was so happy in the classroom today, he smiled and bounced as he clapped along to the new zoo songs.  He looked out the window and the sunny weather, during "weather time" and put a clip on the weather board.  CH traced the letter U, and raised his hand to go to art without prompting!  He made a U for umbrella in art today too!  (Wendy)

CH had a good OT session today in the "gorilla gym".  He was all smiles throughout the session and really enjoyed the brushing and jiggler today.  He did a great job with his programming and tried the body sock again today.  It's a bit sneaky but he did really well swinging in the body sock because he couldn't see my hands pushing him to try and stop me! :)  He loved giving out hugs to me today and was attempting to talk all throughout the session!  (Mandy)

CH had a great session today! He was all smiles and a great listener today.  He engaged so well with all of his tasks and even said "frog" a few times again today!  He participated so well today - Great job! (J)

CH chose to play in thematic play first today.  He played the clown games and got in the animal "cage" at the zoo.  While he was in the cage his friend pretended to feed him some corn and strawberries.  He pretended to eat it with no prompting!!!  Not only did he eat it, but he was smiling the whole time and looking right at his friend! :)  It was so great!  In play centers CH played in collaborative play with some support and also pushed a train and a leopard car.  During social games CH responded to with no support and made a match in "memory"! (Morgan)

Tantrums Vs. Meltdowns

Today we had what you call a MELTDOWN!

I don't know why I thought it would be a good idea to try to make Chase poop in the potty.  This is something we have pretty much not even tried to do since we initially got him potty trained.  He pees in the potty without any problems and hardly ever any accidents, but he will NOT poop.  He strips down, puts on a pull up and goes to hide in our closet instead.  It really doesn't bother me all that much.  I know, just like EVERYTHING ELSE, he will do it when he's ready.  It bothers Big C more than me, and today I just happened to catch him in the process of putting on a pull-up so I thought I would try to get him to go on the potty.  BAD IDEA.  A 20 minute meltdown ensued.  

So guess, what?!?  He now has on a pull-up and is happily sitting in his bed, playing his iPad, waiting to have to poop again.

Baptism

This video was so moving to me!  I pray all the time that Chase is able to understand the concept of God and faith and being saved.  This gives me so much hope for him!

http://www.faithit.com/nonverbal-autism-millie-hunt-amazing-god-story/#.U7r5OMEXqbQ.facebook

Lots of FIRSTS for Chase

In the last week Chase has blown us away with all kinds of new and exciting things.  It started the Saturday of the Race Across the Spectrum 5k...we were swimming that afternoon and I said "go to My Miles" (which is what baby Miles calls Aunt Miles) :)...anyway, Chase said "My Miles" right after me and proceeded to swim straight to her like it was no big deal.  I wasn't sure I heard him clearly, but Miles heard it too!

Then last week at school, on Wednesday, he was working on some of his iPad goals saying "I + see + dog/frog" when the therapists holds one of the 2 things up.  Miss J said "what do you see?" and held up a dog, and he actually said "dog", then she held up the frog and he said "frog"...OUT LOUD...clear as day, like no biggie!  We tried to pull the video from the session but the sound was unplugged, OF COURSE!!!  I still can't believe it!

The next day they were going around working on waving "Hi" and "Bye" to people and he actually said "Hi" and "Bye" 3 different times.  AND THEN in the classroom they were pretending to be in a car going through the car wash and Miss Morgan said "scrub scrub" and Chase repeated it exactly like that after her!  What an exciting week!

Not only has he been saying new words, but during circle time he has been actively participating in the weather and story times and spontaneously raising his hand for a turn to do different activities...this is HUGE engagement!!!

And THEN, we went to Jackson for the weekend and Big C took Chase to the bathroom.  When he was finished Big C said "All done?" and Chase said "all done!" then hopped off the toilet and ran right along his merry little way!

He's been saying a lot of new consonant sounds lately as well /f/ and /p/.

Lastly, this may not seem like a big deal to many people, but we were at the playground last Thursday and I kept noticing Chase inching his way closer and closer to the swings.  He used to LOVE to swing, up until around age 2, then something switched and he was TERRIFIED of it.  He would have nothing to do with swinging, would run to the opposite side of the playground from the swings and completely freak out if we even tried to get him to sit on one.  I'm not sure if something happened to scare him or if it's a sensory thing, but regardless, he has wanted nothing to do with a swing for the last 2 years.  We have been working on this in OT and we got him a platform/hammock type swing for his birthday this year that he does actually like and will now sit and swing on.  But back to the playground...he eventually sat down on a a swing, lifted his feet, then began pushing off with his feet and SWINGING!!!  I couldn't believe it!  I think I took 10 videos of him doing this!  He even let go with his hands a few times!  It was amazing.

This kid never never ceases to blow me away with the skills and things I have taken for granted for so long!  He always does things on his own timing and when HE is ready to do them.  I have always said, from the time he was an infant and learning to sit up or crawl, he will do it when HE is ready and on his own terms, and that has been true of him from day 1!

I had kind of come to terms in my mind, that he may not ever talk and I was going to have to be ok with that.  I was mentally preparing myself for that to be the case.  But after last week, that is the most he has said EVER in his life, in such a short period of time, I am beginning to have new hope, albeit cautious hope (trying not to get my hopes up too high), but still praying daily that his speech evolves more and more each day.

Race Across the Spectrum 5K for Autism

It was great day celebrating and supporting The Brown Center.  I just want to thank all of our family and friends, who not only signed up for our team (Race for Chase), but who showed up bright and early for the 7:00am start time to race!  You all are rock stars and it meant the world to us that you were there!  And thank you to all the other people who could not be there with us physically but who donated or sent prayers and words of encouragement.  We love you and appreciate you all! xoxo

Grand Marshalls for the race

Crossing the finish line!!!

Most of team "Race for Chase"!

Fundraising for BCA

Dear Friends and Family,

I hope this email finds you all well.  As most of you probably already know, this coming Saturday is one of the biggest fundraisers of the year for The Brown Center (where Chase receives therapy), The Race Across the Spectrum 5K.  The Brown Center is a non-profit organization that depends on donations for over half of its operating expenses, along with the tuition each family pays.

I have had several people ask about making donations, who are not able to attend the race this Saturday, so I am sending out this email with information on how to make donations to the "school".  There are several ways to donate online or by mail, but the way that is most meaningful and beneficial to Chase, and the therapy that he receives, is below.

A scholarship fund, named Jackson, TN Scholarship Fund was set up through the Brown Center where any donations will go directly to Chase's benefit.  And in the future, if any other families from Jackson attend BCA, this scholarship fund will remain to benefit their child(ren) as well.  This is a tax-deductible donation and a tax receipt will be mailed to you for any donations made.   

To make a donation to this fund simply mail a check made out to "The Brown Center" and in the memo area put "Jackson, TN Scholarship Fund".  

Mail checks to:

The Brown Center 

2702 Greystone Rd.

Nashville, TN  37204

For any questions regarding donations or if you would like to donate using your credit/debit card please call Lena Warren at BCA at 615-385-7994.

The Brown Center has been a true God-send for not only Chase, but our whole family.  I wish every child with Autism had access to the kinds of therapy Chase is receiving at BCA.  He is doing so well and learning so many new things every day.  He amazes us with the progress he continues to make and we have learned so much, ourselves, in this process. The Brown Center

We truly appreciate each and every prayer, words of encouragement, and support you have all given throughout this process and our move to Nashville.  We know without a doubt this is the BEST place for Chase to be and we cannot thank you enough for being there for us!

Sincerely, 

The Herndons

GFCF Update

We have now been GFCF for 6 weeks.  I miscalculated and thought it had been 8, which was my cut off time for trying it out.  I have been struggling a lot lately about whether or not this diet is having any affect on Chase or whether we are seeing any positive changes.  It's so hard to tell with him because the diet has not unlocked his speech or had any other miraculous side effects (so we thought).  And I'll be honest, I was really hoping the diet wouldn't work for him because it's so hard and so expensive.  He is already a picky eater and now with this diet he only eats a handful of things, mainly: fruit, ruffles, peanut butter and GF chicken strips.  I have been counting down to the 8 week mark to be able to quit this diet, I won't lie.  Well, we are only at 6 weeks, I just counted back on the calendar, and it turns out we may have seen more positive results than we really though.

Chase has had a couple of GF things throughout these last 6 weeks, but we hadn't really noticed if it had any effect on him, negative or positive, so I just assumed that gluten must not really bother him.

This past Thursday, while I was feeding Miles lunch (a piece of cinnamon toast), Chase saw it and grabbed it and started shoveling the toast in his mouth.  I thought "oh well, it's been 8 weeks, I'll just give him some toast and see what happens?!"  Well, that turned in to regular waffles for breakfast on Friday, Chick-fil-A for lunch, and grilled cheese for dinner, with a glass of regular milk.  Saturday for breakfast he had 4 Pillsbury cinnamon rolls and a peanut butter and jelly for lunch.

By Saturday afternoon he was kind of grumpy and ill/irritable.  I just thought it was because he had woken up early and we had gone swimming so he must just be tired.  By this morning (Sunday)...it was clear...the gluten was having a seriously NEGATIVE effect on Chase.  He is stimming out of control on his iPad again, having melt downs and tantrums over EVERY little thing or if he doesn't get exactly what he wants, BOUNCING OFF THE WALLS and yelling just to be loud...all the annoying, pull-your-hair-out, make you want to scream at your child, kind of things.

I had not even realized how much these behaviors had gone away because I have been so focused and stressed over what I'm going to feed him next or how much this diet is costing us.  I really didn't want to see any positive side effects from the diet unless they were BIG.  But after having a day and half of these behaviors back in full force I can say without any doubt or reservation that this GFCF diet is WORTH IT and IS WORKING.  We immediately cut the gluten back out of his diet after breakfast today and will not be going backwards again.

GFCF Diet

I haven't posted in a while because it's been a rough few weeks since we got back from the beach.  After meeting 2 amazing families, both dealing with Autism, my sweet new friend Andi sent me several books on gluten-free diets and I have spent a lot of time reading and researching gluten-free and casein-free diets in children with Autism.  We have tried this diet once before, when Chase was around 2 1/2, but we had been thinking (prior to our beach trip) about trying it again now that he is older and eating more of a variety of foods (and in feeding therapy to help support us in the process).  I initially said I didn't want to try the diet on him until I had definitive answers as to whether or not he had any gluten/casein allergies or sensitivities.  I wanted to get blood work done (IgG and IgE blood panels), but after calling around and looking in to that it seemed like an expensive process, not covered by insurance (surprise), and not worth the hassle.  I can't help but wonder if God put Andi in my life to revisit this diet option and introduce us to new literature and information about it?   So we dove right in and started the diet 2 weeks ago Saturday.  We just cut all gluten and casein out of his diet cold turkey.

He has done really well, for the most part, adjusting to the foods we have had to replace with GF options and hasn't seemed to miss his dairy products all that much.  He doesn't LOVE the new options, but he eats them and doesn't put up much of a fight (like our last experience with this diet).

One reason we decided to give this diet a try again is that Chase has seemed abnormally (for him) hyper the last several weeks.  His attention span is shorter than normal and he has been waking up SUPER early, even for him (4:30-5:00am!!!!!).  It is taking its toll on the whole family and really wearing all of us out.

So the more I read about gluten and it's relation to Autism, and how it affects people's (not everyone's) brain, it really made a lot of sense to me and got me wondering if maybe removing it from Chase's diet would help with all these issues we have been having lately.

In a nutshell, what I gathered from everything I read, is that children who have "leaky guts" doesn't necessarily mean they have bowel movement issues.  Chase has always been very regular in this department so I previously thought we had no reason to think he had "leaky gut", thus no reason to try this diet.  BUT from what I gathered, researching all of this, is that "leaky gut" just means that the way some people digest certain food proteins (particularly gluten and casein proteins in this case) can affect how their brain functions and reacts to those proteins.  So some people with "leaky guts" don't fully digest gluten or casein proteins in food, they get through the digestive tract walls in to the blood stream and go to the brain, acting on the brain like Opium, and causing all kinds of behavior and developmental problems in some kids/people.  This made sense to me when thinking about all of Chase's ADHD type behaviors and the way he has been BOUNCING OFF THE WALLS lately with hyperactivity.

We are now a little over 2 weeks in to this new diet.  The first 10-12 days were ROUGH.  His behaviors got REALLY bad, waking up sooo early, VERY VERY hyper and "stimming" WAY more than normal, and having tantrums over the smallest things (like not going the way he wanted to in the car).  He has pretty much not had a tantrum in almost 6 months prior to starting this diet.  I had read that there can be a "withdrawal-like" side effect when you first start the diet and that it can last anywhere from a few days to a month while the gluten/casein is working its way out of your system.  And a lot of times behaviors get worse before they get better.  It's like "coming off of a drug" and having drug withdrawals.  I am praying that is what we are going through.  Although Chase has still been getting up really early still, just the last few days the hyper-activeness and overall wildness have seemed to settle down a little bit.  It's still a little early to tell how this will affect him, but I hope in the next week or 2 we have a clearer idea.  Stay tuned...

These are a few links to some of the books and information and I read:

http://www.amazon.com/Kid-Friendly-Autism-Cookbook-Updated-Revised-ebook/dp/B004PLNSDG/ref=sr_1_1?ie=UTF8&qid=1401737637&sr=8-1&keywords=Gluten+Free+diet+in+autism 

http://www.amazon.com/Grain-Brain-Surprising-Brains-Killers-ebook/dp/B00BAXFCPO/ref=sr_1_1?ie=UTF8&qid=1401737726&sr=8-1&keywords=grain+brain

https://www.youtube.com/embed/iL4SD5f2toQ

http://www.thegfcflady.com/

http://www.drperlmutter.com/a-gluten-free-casein-free-diet-may-lead-to-improvements-in-behavior-and-physiological-symptoms-in-some-children-diagnosed-with-an-autism-spectrum-disorder-asd-according-to-researchers-at-penn-stat/

http://blogs.prevention.com/inspired-bites/2014/05/12/food-allerg/

The Move Of All Moves

We sighed a big sigh of relief...this move to Nashville was working out after all.  We were scheduled to move September 1 (the Sunday of Labor Day weekend).  Chase was on call and wouldn't be able to come help.  My dad was off work, so the plan was that we would drive up to Nashville that morning and unload as much as we could in to the house, with the help of my sister and her boyfriend, and then drive back home that night while my mom kept the boys in Jackson.  I had been taking loads of boxes and putting them in Miles's (my sister's) garage every time I went up to house hunt, so all the boxes were there.  We had loaded up a POD with all of our furniture that was waiting in the driveway at the rental house.

We were scheduled to arrive in Nashville around 10am that Sunday.  I called my landlord Saturday before we left to make sure we could get in to the house to start unloading.  He informed me that we could not get a key until we paid our first month's rent (THANKS FOR LETTING ME KNOW NOW!).  It was a Saturday afternoon!  Banks weren't open!  What was I supposed to do?!?!  My only option was to drop a check off at their office when I got in to town Sunday.  FINE!  DONE!  So I dropped the check off through the slot in the office door at 10:15am Sunday and called to let Ethan (my not-so-nice landlord) know the check had been dropped off.  He then told me he would have to verify it was there before he would give me the code to the key box on the door, and that would be after he got out of church!  WTH buddy!  We just drove 2 hours to start moving and while I'm glad you are going to church this is SOOOO not convenient!  UGH!  

We made the best of this annoying situation and decided to just unload what was in our cars in to the carport at the rental house and go get loads of boxes from Miles's until Ethan got out of church.  [Side note: my dad and I are like 2 peas in a pod!  Literally, it's scary how much we are alike.  We are both very efficient minded people (somewhat OCD) who think we can do pretty much anything ourselves, don't like to ask for help, and like to get things done quickly].  That being said...We arrived at Miles's and started to put boxes in to the back of one car when my dad looked at me and said "I hate to tell you this, but I feel kind of weird."  Ok?  I said, "Like you feel sick or something?"  His response was, "Well I kind of feel like I may be having a heart attack!"  WHAT?!?!?!?!  My "motherly instincts" kick in and I am like, "ok, what are your symptoms?  What hurts?  etc..."  He tells me he picked up a really heavy box (which I had told him NOT to do until I could help him, but he did anyway) and then started feeling "funny".  There he goes trying to be efficient and not waiting for help like I told him to! 

Off to Vanderbilt ER we go...

We valet park, (such a nice amenity) especially considering you are automatically billed $2500 just for walking through the front door, and continue on to triage.  It doesn't take us long to get to a room.  My dad's EKG checks out fine so they proceed to do blood work and hook him up to monitors to check his BP and heart rate, etc.  

After his EKG and everything came back normal I finally sighed some relief, BUT they said he would have to stay to be monitored for at least 6 more hours.  It was 11:30am at this point.  I texted Ethan what had happened and asked him if there was ANY way he could go on and text me the code to get the house key so my sister could get in the house and start putting boxes inside.  He never responded.  In the mean time Miles and her boyfriend started making trips from her house to mine with boxes.  Eventually Ethan showed up (around 1pm) and let them in the house (how nice of him), never once asked how my dad was doing. 

I called to fill my mom in and she and my brother got in the car to come to Nashville to help while Chase's grandmother came to keep the boys.  What a nightmare!  Was this really happening?  After everything it took to get to this point WHY was this happening now?!?!  Praise the LORD my dad was ok, but it was still a very scary few hours.  He ended up only having a pinched nerve in the left side of his neck that was sending some pain in to his left chest and numbness in to his left arm.  False alarm for heart attack.

My dad insisted I leave him there and go help Miles, so knowing my mom would be there within the next couple of hours I went and we started unpacking the POD.   We worked our tails off (me, Miles and her boyfriend).  My mom and brother finally showed up at the house with my dad (they let him go early since everything checked out ok) and we got everything inside and somewhat organized.  My dad and brother went on home and my mom and I decided to stay and head back a little bit behind them.  

Well we got ready to leave behind Miles and her boyfriend and realized my mom's keys were locked in her car!  ARE YOU KIDDING ME?!?!  Is this really happening?  There had to be a hidden camera following us today!  Luckily, Miles's bf had roadside assistance through Verizon that would come unlock the car for us, but it was going to take at least an hour.  It was 4:30pm at this point and had been a very long day, but we didn't have a choice.  We waited.  And we finally made it back to Jackson around 7:30pm that night.  LONGEST. DAY. EVER. (almost)

God's Timing, Not Ours

God has had his hand in this process from day 1.  Our move to Nashville that is...

As I look back on this past year, the fog is lifting, the 20/20 vision is returning, and the weight is being lifted from our shoulders a little at a time.  It has become apparent that God has had his finger on this whole transition from the get go.  We always knew He did, but seeing it in hind sight is pretty amazing!  Why did we ever doubt Him in the midst of pain and suffering?  It's so easy to ask WHY?  Why me?  Why an innocent child?  Why are things not working out?  Why is it taking so long?  Are you really there God?  Are you going to help us out here?!?  

We had many "questioning" moments this past year.   And still do. 

Once we got home from the "diagnosis" we made a conscious decision not to discuss it with many people until we could figure out a game plan.  What to do next.  We didn't want the diagnosis to define Chase or be a negative label.  We didn't want everyone's opinions or suggestions of what we should do. We weren't ready to answer a bunch of questions until we could let it all sink in.  We just wanted to pray and research and make the decision we felt was best for our Chase.  We knew from the moment we got his diagnosis we would have to move.  We were ok with that, we had a peace about that much.  Deciding where to go was the big question.  Insurance, in the state of Tennessee does not cover any types of therapy related to Autism.  If you are lucky you may get 30 speech or OT sessions partially covered, but that doesn't touch what Chase really needed/needs (therapy EVERY day...you could breeze through those 30 visits in less than 2-3 months).  That was a factor in our decision, at first.  We looked at Texas and South Carolina.  Those were the 2 closest states to home where insurance covered the cost of therapies.  It was all so overwhelming...where to begin, where to look, etc.  All we could do at that point was pray about it.  We prayed for God to give us answers, to show us the path to take, to lead us in the direction that was best for our WHOLE family, not just little Chase.  Something about moving so far away, regardless of insurance, just wasn't settling.  I knew we would need the support of our families in the upcoming months and years of Chase's therapy so we kept praying for guidance.

My dear friend Abbie called me soon after I told her about the diagnosis and put me in touch with a girl she used to be in small group at church with, Rachel.  She told me that Rachel had moved, about 6 months prior, to Nashville to put her autistic son in a program there.  (Was this a sign from God?  I definitely think so!)  So I called up this total stranger and confided in her details about my son that I had never shared with anyone outside of family.  She told me her story and shared her resources...invaluable tools on this journey.  She would become my advice go-to and my sense of sanity and understanding in the months to come.   She would be the one to introduce us to our new home for therapy here in Nashville...The Brown Center for Autism.  I scheduled a visit to BCA in early March and knew instantly this is where we needed to be.  I had such a peace about this place and felt that it was EXACTLY what Chase needed.  Another answered prayer!  We put our house on the market shortly after and waited for the showings to start.  Chase went back to Nashville with me in early April for a "parent interview" at BCA and it was at that point we wrote a check for our first month's tuition to secure our spot...August 5 was the start date!  We had NO IDEA how we were even going to get ourselves to Nashville, but we knew we had to do everything in our power to try.  

Our house got a contract on it within 5 weeks and we started packing up.  Then the first setback came...the buyer backed out 2 weeks prior to closing.  Disappointment and frustration began.  Trying to sell our house became our #1 priority, behind making the most of Chase's therapies in Jackson.  By mid-July, with no offers in sight, and going back and forth on whether or not to rent (I was very hesitant about renting), we decided to try leasing our house and had a renter within a day, (BLESSING)!  And on top of that they agreed to pay well over our mortgage for a year lease, (BLESSING)!  Check the house off the list.  We finished packing and moved in with my parents at the end of July.

The next step in the process was finding Chase a job in Nashville.  This would prove to be the most challenging and testing of the steps to get there.  His job in Jackson was VERY demanding, leaving him little to no time to interview or make phone calls.  He spent many late nights emailing and searching online while I began the house hunting process.  As August 5 approached we realized we would not be making that deadline to get Chase started so we pushed the start date back to September 9, after Labor Day.  That gave us a few extra weeks to search for a job and a house.

As the days ticked down and no job interviews were scheduled frustration and doubt creeped in.  We knew this was the right decision and we had faith that God would provide for us, that things would work out...but I am a planner and I wanted things mapped out and marked on the calendar.  Not what God had in mind.  We weren't sure what the next steps were.  Do we commit to a house/lease without Chase having a job?  Do I commute with little Chase until Chase can get a job?  Do we push the start date back AGAIN?  All we could do is pray...and continue to have faith that God would work things out.  My main prayer in these days of doubt were that God would help me keep my faith in Him and that I would continue to trust in Him and in His timing.  Chase and I were both adamant that he begin at BCA on September 9 NO MATTER WHAT we had to do to make that happen. 

I started driving to Nashville and looking at rental houses.  On about the 5th trip to Nashville, in pouring down rain, 2 weeks from Chase's start date at BCA, I finally found a house.  I was so tired of looking at over-priced, tiny rental homes, I just said "WE WILL TAKE IT"!  I was a nervous wreck signing the lease and sending in the check for the first and last month's rent plus security deposit.  THIS IS IT.  Here we go!  We are committed now.  It was a huge leap of faith for us because Chase still didn't have a job.  We still had doubts and reservations about whether or not this was the right choice.  Then the interviews lined up.  Chase left for Nashville on a Friday morning at 5am with 2 interviews scheduled.  By the end of the day he had met with 5 people and had 2 offers on the table within a week.  But the money wasn't enough to pay for Chase's therapy and this new cost of living.  The next major hurdle we had to get over.

There was one more possible job offer we were holding out for.  Chase put off the other offers as long as he could.  Should we risk losing these offers holding out for a better one?  I was a nervous wreck, again!  Then it came...5 days before we were supposed to move, the offer he wanted!  Praise God!  Chase would work out his 2 weeks here in Jackson and be in Nashville a week after I moved with the boys (not ideal, but we were ecstatic it had all worked out)! 

We joked throughout the entire time that God would let everything fall in to place, probably at the very last minute and boy did He ever!  Down to the wire!