My Out-of-Sync Child...

I have made some comments here and there about our dear, sweet, crazy Caleb. I have mentioned that he has some delays and some other quirks.  And to be honest, we didn't quite know how else to explain it.

Caleb has been "different" since he was born.  Starting with the need to be swaddled TIGHTLY as a newborn to his speech and toilet training delays, things have always been a little bit harder with Caleb. At first, we just assumed that he was different than Alaina (as all siblings are).  Of course we questioned a few of the really strange things -- like sleeping 16-18 hours a day until he was two -- but we weren't really concerned about him until he was almost three.  At that point, I remember looking at a developmental checklist, especially in regards to speech, and I became quite concerned.  We contacted an early intervention program in Nebraska and got started with an evaluation.  I had seen a *few* signs of him being on the autism spectrum, but the therapists that visited our home and worked with Caleb determined it was simply a speech delay.  We were going to start weekly therapy with him but then we moved.

After we got to Florida we were busy with our new jobs, getting settled, and me being pregnant (with a VERY hard pregnancy).  It wasn't until the spring that we finally started down the early intervention road again.  By this time Caleb was talking a lot more but still showing some other issues. We got started, but the Florida program is so backed up that our full-evaluation appointment wasn't going to be until November (as in two months from NOW). 

After we found out that we were moving to Indonesia, a few people mentioned their concern about us moving without knowing what was wrong with Caleb and to a place where treatment options would be severely limited.  Although we understood the concern, we felt that if we were being called to go Indonesia, then Caleb was called too and that he would be cared for -- even if it was no one but the great Healer Himself.

Over the summer I was visiting with my sister and we were talking about our boys.  Caleb and Ashton are just one month apart and show some of the same "quirky" behavior.  My sister mentioned the book THE OUT OF SYNC CHILD.  I don't really remember if she explained much to me, but it must have been enough for me to be interested enough to find this website.  After reading the website I immediately ordered the Out of Sync Child and two other related books.  When they arrived I broke into them right away and it didn't take me long to know that I was reading about my own child.  It was surreal to be reading about stuff that we had witnessed in Caleb -- things that we thought were either just quirky or just "Caleb."  But no, reading this made so many things finally start to make sense...

-- why Caleb needed to be bound so tightly to sleep when he was a baby
-- why he drooled excessively even when he wasn't teething
-- why starting at six months he insisted on being upside down ALL THE TIME
-- why he wasn't talking until he was three and even then only his family could understand him
-- why he couldn't (can't) do things like get himself dressed
-- why potty training just wasn't happening
-- why he likes to crash into things on purpose
-- why he could spend forever spinning on the tire swing in Florida and not get dizzy
-- why he can't seem to figure out when he is hungry and when he is not
-- why he sucks his thumb
-- why he constantly rubs the ear of his Elly
-- why he sometimes puts toys and other things into his mouth even though he is four
-- why he can't stand to hear a vacuum and covers his ears and runs away
-- why he doesn't draw or color
-- why he is addicted to just a few foods (spaghetti, pizza, Thai Sticky Rice, cereal, watermelon, and anything sweet)
-- why he switches back and forth from his left hand to his right, even at age 4
-- why he touches everything new that he sees
-- why he runs everywhere
-- why he talks SO LOUD at times
-- why he loves big bear hugs but wipes off kisses
-- why he loves to be tackled and tickled
-- why he can sometimes be rough with other kids and animals (rough, not mean)

and on and on and on....

From reading, I was pretty sure that Caleb has SENSORY PROCESSING DISORDER.  This is an often-misdiagnosed problem in kids -- in very basic terms, the route from the brain to the senses and the senses to the brain is all messed up.  Messages get muddled and therefore the brain and the senses (how we take in every single piece of information about our world) can't communicate well. The things that we take in through our senses (sight, smell, taste, touch, and sound) get all muddled up before reaching the brain.  Then then brain sends out messages to the senses (that is hot -- don't touch, that is loud -- go somewhere else, you are full -- don't eat anymore, that hurts -- don't crash into that) and they get lost somewhere in transmission.

Most of the kids with SPD struggle with TOO much information coming in from the senses.  Little things that wouldn't bother other people REALLY bother them -- the seam of socks, tags in clothes, people touching their arm, music playing, lights and activity.  Just imagine that the everyday sensations we have (and barely notice) are multiplied numerous times over before they reach our brain.  So instead of hearing light music playing it registers in the brain as LOUD.  Or if someone touches you lightly on the arm and it HURTS.

Although this is the way many of the SPD kids struggle, in most of the senses, Caleb presents in the opposite way.  He doesn't get ENOUGH sensory input.  Most everyday sensations aren't felt by him at all or if they are felt that are bothersome (for example, he doesn't like kisses and wipes them off -- he doesn't feel the kiss -- he feels less than that, sort of like a bug landing on you...what do you do to that bug?  Try to wipe it off and get rid of that feeling of it lightly touching your skin). Because Caleb doesn't take in as much sensory information as he should, he seeks MORE out on his own.  He needs MORE sensation in order for his brain to register a NORMAL amount of input.  A big bear hug that squeezes him half to death just feels like a normal hug.  Crashing into a wall and falling on the floor is FUN.  Spinning and spinning and spinning brings him sensory input that his brain needs.

It might not seems like a big deal but imagine what it would be like to

-- not be able to feel your tongue well enough to make proper speech sounds.  In your brain everything sounds fine but when you say it you can't understand why no one understands you.
-- to not be able to know when you are hungry or full -- you go some days without eating at all and other times you eat so much that food is literally falling out of your mouth
-- wind and other light touch is bothersome
-- only be able to taste things with a strong taste
-- to not be able to develop fine motor skills because you can't feel everything enough and your senses can't communicate and perform complex patterns of movement?

____

The other problem that SPD kids have is INTEGRATING their senses. It is bad enough that they can't bring in sensory input to their brain without it getting messed up.  But then to add to that, they can't make their senses work together. 

Imagine you are at someones home and you see a pretty sculpture.  It has bright colors and it looks fun.  If you look at it you know what it is -- you know that it is a sculpture, you can tell from the glossy appearance that it will be slick to the touch.  You can tell that it would be hard and if picked up it be broken easily.  You decide you want to feel it so you pick it up using the right amount of strength -- enough so it picks up but not so much that it goes flying out of your hand.  You hold it and it is just how you imagined it.  You hear your host calling your name to come to the kitchen so you gently set it down and go on your way.

Now you could do all that because your senses were working together.  You could use your sight to know how it would FEEL.  You knew it would be slick, hard, and how heavy it would be.  You knew it wouldn't make noise.  When you picked it up you instinctively knew how much muscle strength it would take. When you heard that it was time to go, you knew to set it down gently.  Your senses communicated with each other.

SPD kids struggle with this.  Their sight can't talk to their touch sense.  Their can't tell what something will feel like by just looking.  Their hearing and taste and smell and tough and sight don't work together they way they should.  Can you even imagine what that would be like?

______

So, that's my Caleb.  I am learning little by little.  I only know enough about the problem to know that Caleb has it and to want to HELP him.  Like I said, most kids who have SPD struggle with OVER-stimulation, not UNDER-stimulation like Caleb. But he is in good Hands and I am confident that we can't work with him to succeed.  Did you know that the brain can rewire itself?

After arriving in Indonesia we met a family who has two (maybe three) kids with SPD.  Their kids are older so it was interesting to talk with them and also to see how it manifests itself when kids are older.  The mom and I chatted a few times about looking for diagnostic and treatment options.  We talked about maybe going to Singapore.

When I was in Singapore a few weeks ago I actually found a clinic that specializes in SPD.  I was thrilled to say the least. I thought, "what an amazing blessing!"  When I got home I started to look into getting some more information on the clinic.  My hope was that we could get diagnosed and then do some therapy at home mixed with a trip to Singapore once every few months.  As I was google-ing away, my spirit was prodded.  "Don't you think I can do more than this" He asked.  My spirit said okay, here we go.  Into the google box went "sensory processing disorder AND bandung."  Up popped the name of a therapist who works as a consultant in Singapore. I read about her -- "hmmm, different clinic but still in Singapore...hmmm...graduated from the same college in the US as Jason...interesting...but wait, what's that?  She has opened her own clinic in Bandung?"  A fruitless search later for an email contact called for desperate times. I searched for the name on Facebook, got a hit, and wrote to her.  She wrote back within the hour and gave me her phone number.  We chatted.  We set up an appointment for a visit.  After the visit Caleb had a full evaluation.  Yep, I was right.  SPD it is. 

The therapist is AMAZING.  She graduated from the same undergrad school as Jason (Calvin College) and went on to earn a number of post-graduate degrees.  The clinic is AMAZING.  The evaluation was AMAZING.  Caleb LOVES her and LOVES the clinic (what kids wouldn't love a "doctor's office" with a ball pit, inner tubes, crash pads, trampolines, bins of rice and beans to play with, shaving cream on tables that you get to write in, monkey bars, spinning swings, etc. etc. etc.

And you know when she opened her clinic?  AUGUST.  OF THIS YEAR.  AS IN RIGHT WHEN WE MOVED HERE.  And you know when she said she felt prompted to open a clinic in BANDUNG?  In JUNE.  AS IN RIGHT WHEN WE FOUND OUT THAT WE WERE MOVING HERE.  RIGHT WHEN PEOPLE QUESTIONED OUR DECISION TO MOVE BEFORE KNOWING WHAT WAS WRONG WITH CALEB.

And the best part?  We can afford it. According to my friend (the one with two kids with SPD) therapy in the States (which insurance won't cover) would run about $2000 a month.  I guess that might be fine unless you are in full-time ministry and your salary barely reaches that much. You know what the same therapy, given by a US trained therapist, costs here?  $120 a month.  Yes, our Father loves us and LOVES Caleb and will take care of him.

This post has been long enough -- very therapeutic for me to write and I am so glad I will have a record of the beginning of this journey. But I didn't want to leave you hanging with lots of questions -- yes, it is somewhat treatable through sensory training.  Especially at age four, the brain isn't done growing and developing and it can be rewired.  According to the therapist, the more we can get the neurons in the brain to fire the more the brain will rewire.  An example of this (from my totally UNtrained making assumptions mind):  EVERYone noticed a huge language explosion in Caleb a few months after we got to Florida.  And not only did he start talking more, he started playing more, doing more, acting more "normal."  Looking back on it, this all totally coincided with us buying our season passes to Disney.  Can you think of a place that would offer MORE stimulation than Disney World?  Can you imagine going once or twice a week for seven months? Can you imagine how much all the sights, sounds, smells and feel of the rides could benefit someone who NEEDS LOTS of sensory input? Yea, Florida was good.

Caleb will begin weekly therapy in the middle of October.  We will also be doing lots of stuff at home with him.  School will provide even more help to him.  He is loved, he is cared for, he was created just as He wanted him.  He was knit together in my womb and all his days were laid out before Him.  He is fearfully and wonderfully made and I am thrilled to be able to call him mine.

Comments

[Joy]

What an amazing turn of events! How wonderful to be able to share such a powerful story on just how God can make things work out just right when that is His plan.

I'm a total stranger to you...but I've been reading your blog for some time now. I must have followed a link from a digi-scrapping site somewhere along the line.

Your images are amazing. Your digi-stuff is fantastic. I was just meaning to write how much I enjoy how you show your templates with actual photos, papers and embellishments. And now, the witness you've provided in this one entry alone has made my heart sing tonight.

Thank you!

[Jacki]

Wow, that makes me cry! How amazing is God?!? That's just incredible. I read that book years ago but should get myself a copy here and reread it. I've known kids w/ SPD. Now that the "mystery" is discovered, the journey will take on new shape and meaning. How awesome to have the therapist there!! Wow! Bless his heart. Makes me think of all those times in nursery he'd love to roll around on the ground with Josiah. Josiah loved that kid!! My kids still peer over my should when I'm reading your blog. :) Give him a giant bear hug from us!!!!

[Shabby Miss Jenn]

OH wow Janet! I'm reading your entire post getting chills up my spine when you mentioned some people being leery of you all moving and then mentioning the therapist. WOW! God knows what He is doing as always. :) That's just awesome! I hope Caleb does well in his sessions. :) Will say a prayer for you all and know that we who read your blog fully support you!

[Laura]

Wow, what an amazing puzzle God has laid out for you to see. Your Caleb is a beautiful little boy and I am so happy everything is coming together for him.

[joelsgirl_Kellie]

Aw, girl. That's the best story ever. You make me feel the urgent need to be more in tune with the Spirit and not make so many decisions based on logic!

[Daisy]

Thank you for sharing this! God is so awesome, isn't He?!? Love how the timings worked out before you even knew it!

[Rachel]

I am so glad you were able to get Caleb diagnosed and find a specialist for him. As soon as you started listing off his quirks, I knew immediately what he had. My friend has a son with the exact same version of SPD and it took them forever to figure out what it was. But now they stimulate his senses in school to help his brain focus on the lessons, and they do therapy once a week. It was a major struggle with the school to get them to help her child properly, it's so sad that this disorder is so severely mis-understood. Anyway, you will see great improvement in your son by the things you have lined up for him, and you are right he is a blessing from God just the way he is!

God bless and keep us updated!
Rachel

[Jeanann]

What an amazing story. I see some of the stuff you mention in Caleb in my son, so I'm going to order the book and see about getting him tested. I just thought it was him, but now I realize that there might actually be something wrong with him.

Thanks for sharing and please keep posting about it. It helps to feel that you aren't alone.

[Jen]

It must feel so amazing to finally know what is happening with Caleb and to be able to get him the help he needs. I am so happy for you all!!

[Hollie]

Janet--wow! Just wow! I don't even think I have the right words to respond to your post. Most of all, how amazing and awesome that God brought you to Bandung--the exact perfect spot for Caleb. And I am sure for your whole family as well. And good for you doing what you were sure you were led to do, and not listening to others worries. Also, you laid out SPD in such a way that it made so much sense to me. I'd heard of it before and never quite understood it. But now I feel like I do. I can't imagine living in that world--especially as a child. I admit that I may be envious though of him being able to spin around so much and not get dizzy (in the most light-hearted meaning way of course) since I get motion sickness so easily and it is very limiting. Thank you so much for sharing this. I look forward to hearing about the exciting journey you are on with him. I know the Lord will do miraculous things:)

[Joy]

This is amazing Janet!!! Truly, God is good and knows and provides for all our needs even before we need them!

[Amber Evans]

Thank You, Thank You, Thank You for this post!!! I am picking up my copy of The Out-of-Sync Child in a little while. I printed out the checklist from the link and I am taking it with me to my son's Parent Teacher conference. I have felt like something wasn't quite right with my son for a while but I could figure out what it could be. There were so many things that I checked on the list. Of course I now wish that I had heard of this earlier, because my son is almost 7 years old now.

[Holly in Japan]

I just love it when God talks so directly to us! It is so amazing to see how perfectly he weaves our lives together with strangers on the other side of the world and brings us together. Praise God! Thank you for your beautiful witness to his provision.

[Sondie]

I got goosebumps while reading this testimony! What a great Creator we have! Thanks so much for sharing this!

[Kresta]

Wow - I'm in tears and have chills from reading this post. God is so good and He does love us and take care of us. What a testimony to following His calling and entrusting your lives and your family to His leading and care. Amazing story - the timeline and everything is amazing. What a blessing. I'm so glad he's gonna be able to get the help he needs!

[Nicole]

Thank you for sharing! A reminder of how AMAZING He is! How in control, how are plans don't compare to the goodness of His. Thanks!

[Nancy Friesen]

Dear Janet - thanks for sharing this story about Caleb. I took a course on Bonding the Senses years ago so know what you are talking about. It is always so amazing to hear how our Father cares for HIs precious children. Blessings,

[Jenn]

Wow! I'm so happy for you guys that you've been blessed with a great therapist and an amazing clinic! Definitely a testimony to the omnipotent power of our God! Awesome!

[Bretta]

Janet, I love reading your blog and rarely take the time to comment, but I sit here with tears spilling out at your amazing story. God is so good!!!! Thanks for sharing...you've encouraged me in a particularly trying time for our family - that HE is faithful and trustworthy and ABUNDANT. :o)

[Joanna]

The Lord truly watches out for us - doesn't he? What beautiful blessings you're finding as you have followed what the Spirit wants you to do. Very touching.

[denali]

Add me to the list of those with goosebumps and tears and an incredible sense of awe along with a giant sized dose of gratitude :)

[Angyla]

Thank you so much for sharing all of that about Caleb!

We serve an amazing God who cares about and works out all of the details!

[Katie]

Wow! That's amazing!!! Thank you for sharing :) I can't wait to see what else God does!

[Kim Hill]

I can so relate to your post. Our youngest son is also out-of-sync and I've been reading the book you mentioned. Things have really improved with therapy through our school district. Good luck to you! :)

[Des]

Janet,

Does your child's therapist work with children with autism as well? What kinds of therapy that he/she provided?

My DD has autism and will be spending summer vacation with her grandparents in Jakarta. I'm looking for therapy options in Indonesia for her.

Thank you.