sensory therapy - evaluation results

"We worry about what a child will become tomorrow, yet we forget that he is someone today." ~ Stacia Tauscher

We had the completion of the sensory evaluation today and the results are not good, although it is pretty much what I was expecting.

He scored at a level of 2 year old and 4 year old. Wow right?

The testing was based on the BOT-2 testing system and is scored based on the below:

• Fine Motor Precision—7 items (e.g., cutting out a circle, connecting dots) - scored as 4 y/o
  
• Fine Motor Integration—8 items (e.g., copying a star, copying a square) - scored well and on target for his age. He was able to perceive the object and duplicate it...there were issues with the way his lines overlapped or curved due to the motor skill issues
  
• Manual Dexterity—5 items (e.g., transferring pennies, sorting cards, stringing blocks) - scored as a 2 y/o
  
• Bilateral Coordination—7 items (e.g., tapping foot and finger, jumping jacks) - scored as a 2 y/o
  
• Balance—9 items (e.g., walking forward on a line, standing on one leg on a balance beam)
• Running Speed and Agility—5 items (e.g., shuttle run, one-legged side hop) - scored as 5 y/o
  
• Upper-Limb Coordination—7 items (e.g., throwing a ball at a target, catching a tossed ball) - scored as a 4 y/o
  
• Strength—5 items (e.g., standing long jump, sit-ups)

I didn't see all of the results because boy was ready to play in the sensory playroom. So, going through this experience is extremely difficult...no one can quite understand how it feels to have someone basically tell you that right now your child is far behind where they should be...and far behind with things that just seem natural. It's not like a teacher is telling me he has a hard time reading and needs summer school. He can't efficiently use scissors. He can't efficiently write, color, hop, skip, jump, throw a ball, catch a ball...and he's a boy...how can this be possible? So now I will sit here and ponder what I did wrong, even though deep down I know there is nothing that we did wrong..but still!

So the evaluation results were harder to hear than I imagined, but it's a good thing. We are finally getting help, we are finally finding resources, we are finally making progress. We are moving forward and things will be significantly better by the time school starts. This is a positive thing!

The therapist is wonderful! I just love her. Boy was very goofy/silly today and had a hard time keeping it together, which happened last time too. I think he is nervous/anxious so this is his way of dealing with it. Ms. Sue was very patient with him and kept him on track.

Some things we need to work on -- playing with tennis balls!!

Next appointment next Wednesday...can't wait!!

nervous hair twiddler

"Worry never robs tomorrow of its sorrow, it only saps today of its joy." ~ Leo Buscaglia

Here are some pictures of how you can tell when boy is worried about something...

The last picture is what his hair ends up looking like each and everyday!

aspergers is little hamburgers...

"Aspergers is little hamburgers inside of me with arms and legs...you know cause AS-PER-GERS sounds like HAM-BUR-GERS. And the little asperger hamburgers have different names...one is shy, one makes noises, one likes Star Wars..."

So the therapist told him yesterday that he has Aspergers and read him a story about "Mike" who has Aspergers and was really focused on Star Wars to the point where his friends didn't want to play with him anymore because they didn't always like Star Wars. Boy said it sounded like him...hmmm go figure! Anyway, the therapist told him that she is going to help him work on different areas of his Aspergers so he can be the best boy he can possibly be and that one of the things they will work on is friendships. He was excited about that.

Then after she explained it to him and explained some of the traits of Aspergers that matched his own traits, she asked if he understood, which he said he did. Then he gave her his own ideas of what Aspergers was...little hamburgers with arms and legs. They hang out inside of him and he will always have them. Sometimes they make him shy, sometimes they make him make noises or do other things.

It was pretty "Gray" thinking for him...he's such a black and white thinker guy. I was amazed, although Im pretty sure he completely believes what he said that there really are little limbed burgers tap dancing around inside of him, but it works for me.

So, if anyone is having difficulty explaining Aspergers to an aspie...maybe you just need to tell them about the little hamburgers...I think I shall now have to write a childrens book with cute little hamburgers with little arms and little legs....little teeshirts that say "Hey I've got my Aspie Burgers on today!"... haha

We went through the first chapter of the book, which he found very interesting. We went through the "Strengths/Talents" section where he could circle things that he felt he was good at or that he really enjoyed learning about and he gave us a little synopsis of each item and how it pertained to him...some of the cute ones were:

dates? - "Yes, I like to remember dates...do you want to know which day someone in class got their name on the board?"

facts about a certain topic? "Yes...let me go get my Star Wars droids.."

mechanical things? (we had to explain what this meant) - "OH yeah, I like batteries" and then he whispered to me "Dad always gets mad at me about batteries because I take them and put them into the toys he doesn't like"

putting things in order? "Yes but the SISTERS always move my things!!!!"

Really those darn sisters! They are really nothing but trouble.

So overall that went pretty well. I am glad he finally knows. Basically the end of our conversation was "Ok, you have this, you will always have this, but you are awesome anyway"

He really is the coolest kid. He is the coolest kid to adults, he is the coolest kid to the older kids in the neighborhood...the kids his age just haven't quite realized how cool he is yet, but they will!

miracle book

I'm still reading Aspergers: What does it mean to me? and I haven't even begun to work with boy with the workbook...there's just so much info to absorb and honestly I'm not yet ready to tell him that he has this condition? disability? What do we even call it? I'm sure I will end up with just "thing"..."So, you have this thing..." hmm...

How would I tell him he had an ear infection? "You have an ear infection, you need to take antibiotics."

So how about, "You have Aspergers, but don't worry, there's no medicine you need to take for it." I'm sure he will just be like "ok cool, what is it? Alright then."

Anyway, the book touches on so many important topics, providing information for him to read about each AND providing strategies to help him deal with the various issues associated with Aspergers. I am very excited to start working with him with this book!!

aspergers: what does it mean to me?

I cannot even begin to blog about the last two days of my life. Basically, we had another milk infestation during vacation and I can't believe I didn't learn from my mistake the last time we had the milk infestation. All I can say is...we were on vacation and I felt badly that he couldn't have icecream so I thought...oh, it's just a little icecream...it can't hurt TOO bad.

I was wrong. Very very very wrong. It is really quite difficult to track down the ingredients of all foods that he eats. It seems much easier to say "hey is this peanut free?" (and have the waiter know what the heck I am talking about) than to say "Hey is this milk free? No, I don't mean lactose free, I mean completely milk free? Well, it matters because milk is evil in our family!" -- That conversation didn't happen quite like that, but based on the looks I received it could have gone exactly like that.

So anyway, we are day two with strict no milk again and I think the crack, I mean milk, is almost out of his system. If things are not turned around by tomorrow, I think I will check him into a detox clinic...I wonder what kind of crazy look they'll give me.

On a much more exciting note! I finally FINALLY made it to the book store to get "Aspergers: What does it mean to me?" by Catherine Faherty. It was recommended to me by our therapist as a great book to use with boy to help explain to him what is going on and why he feels the way he does. My initial feeling on the book is really good. I'm super excited about it.

The book is in a workbook format that he and I will go through together (once he has the milk crack out of his system of course). The first section explains autism and the spectrum -- questions like "Was I born with autism?", "Why do I have autism?". It also stresses that there is nothing wrong with having autism, it does not mean that you are sick, it does not mean that you are bad, it does not mean something is wrong with you...all it means is that you have a different way of thinking. Immediately after that it goes into strengths, such as being very detailed and able to easily memorize various things and asks them to list their strengths in these areas.

Next, it goes into routines, changes, schedules and how to be more flexible. For example (and this one holds true for us) the book goes through why it is important to allow others to be first at somethings even if you always like to be first no matter what. Then there are a few lines that they can write on to mark when they allowed someone else to go first instead of themself.

There is also a sensory section that lists the various sensory issues that they can circle if they are bothered by them with fill in spots where they can provide more info...this will be super helpful for us because I'm still not 100% on what areas we are sensitive to and non-sensitive to.

Overall this book looks amazing and I cannot wait to dig further into it! I will blog what I find is good, bad, and boring! Please let me know if there is anyone out there who has also used this book.

batman=a great vacation

Yesterday we spent the day/night hanging at The Great Wolf Lodge, which was great! Boy absolutely loved the wave pool, didn't like the tube slides. We were very water-logged by the time we were done there! Overall it was a good day with low anxiety issues. Our room had the bunk beds for the kids and they thought that was super cool.

Today we hit Kings Island, which obviously was hugely stressful for boy. He was so worried we wer going to make him ride the huge rollercoasters like Beast. After some convincing he felt slightly better, but wouldn't ride really any of the kids rides. That was ok to him though..he didn't feel like he was missing out and was more interested in this ball game you play and can win a batman stuffed animal. Thankfully my husband won him one. That alone made the vacation perfect in his eyes. He spent the rest of the day playing with the batman, yea! the day was saved!

Here are the rides we rode & what my kids thought of them...

Backyardigans swings - all 3 liked them

Scooby's Haunted House - all 3 were scared, but thought it was fun after

LazyTown Scopters - this had the most RIDICULOUS line! Boy hated the ride...it was high up

Bumper Cars - all 3 loved it

Fairly Odd Parents Coaster - Manthy was the only one who would ride & she loved it

Driving Cars - boy liked it

SpongeBob 3D movie - boy hated it, the movement of the seats scared him

SpongeBob water thingy - boy loved, girls hated it

Lil Bill's Giggle Coaster - boy hated it

I'm forgetting alotM but that's ok. If anyone is thinking of going to KI with kids and have questions let me know.

Tomorrow we hit the KI waterpark. I am thinking there should be less stress with that.

All in all, the kids have been fabulous! Bonus - we got to meet spongebob!

just can't wait to get on the road...

"There is no moment of delight in any pilgrimage like the beginning of it." ~ Charles Dudley Warner

Tomorrow we are off on an adventure. Well, not too much of an adventure, but a 2 adults, 3 kids and 5 hour car ride kind of adventure. We are headed to King's Island in Mason, OH.

Tomorrow night we are staying at the Great Wolf Lodge so the kids can somewhat unwind from the trip and have a blast with the water park activities. Then Wednesday & Thursday we are going to enjoy the amusements of the park -- thankfully there is a water park included with the K.I. admission because I think that may be the only thing the kids really end up wanting to do. Friday we return home, but I am really really hoping to convince my Husband to go 30 minutes south, into KY, to check out the Newport Aquarium...I think that will be amazingly fun! We shall see.

Hopefully it will be a smooth journey. Hopefully.

I will try to blog the fun from my phone for anyone who may care to read it!

"Most of my treasured memories of travel are recollections of sitting." ~ Robert Thomas Allen

things that make you go hmmm?

So, my favorite brand of bread is Aunt Millie bread. You can find Aunt Millie bread just about everywhere and it comes in a variety of types/flavors - wheat, potato, sour dough, white, italian, etc.

Well, when we started our milk-free journey I was much disappointed to find that my Aunt Millie bread contained milk products...all varieties, bummer!

But then...

My husband found that some stores carry Aunt Mille bread from "Perfection Bakery" and if the Aunt Millie bread came from Perfection Bakery there were NO milk products. And, that seems to be across the board for all bread, bun products...if it is stamped Perfection Bakery, then there is no milk.

huh?!

How can that be so? Isn't the Aunt Millie bread a certain recipe that each bakery follows no matter which bakery bakes it?

Apparently not...very interesting...very interesting indeed!

pancakes in a can?

You can now buy organic pancake batter in a Redy Whip type of can...sounds bizarre right? Well, it is milk-free so we bought some and tried it out...


All in all, they weren't too bad. They weren't as fluffy as I would have liked, but Boy liked them!! Bonus -- no mess to clean up...

wow! everything I'm looking for wrapped up into one site!

Alisa - thanks so much for your comment on my blog. It brought me to your website www.godairyfree.org, which appears to be every possible thing about milk-free diets that I am looking for....all wrapped up into one website!

Seriously? Ice cream without milk? GENIUS!

I can't wait to try out the recipes!

First on the list are the frosting recipes...the peanut butter fudge frosting sounds almost too good to be true.

Thanks again for your post and your help in introducing me to such a great site!

wanted: a tasty milk-free cake/frosting recipe

"Only a life lived for others is a life worthwhile." ~ Albert Einstein

We are having a birthday party this weekend so I am in search of a tried and tasty milk-free cake & frosting...

Got No Milk?

sensory therapy session 1

"Your work is to discover your world and then with all your heart give yourself to it."~ Buddha

Today's sensory therapy was great! We started off doing more testing:

1. line up plastic pennies and then pick them up with his right hand and put them into a cup on his left side, all while timed.
2. pick up small pegs with his right hand and put them into peg holes while timed.
   
3. take mixed up cards (some red squares, some blue circles) and separate the cards into two piles, with his right hand only while timed.
   
4. thread a shoelace through wooden block beads while timed.
   
5. jumping jacks

things to work on at home:

1. play card games - simply flipping the cards over (for example dealing cards) helps build the hand dexterity.
2. one handed sorting - practice taking something from the right, with your right hand, and putting it into a cup on your left.

We also did some time in the playroom, working on the swings and ladders. Next week we won't have a session because we will be out of town, but the week after that we are going to start with a little more testing, visual perception I believe she said.

Basically she stated that he has coordination, gross & fine motor, auditory and tactile sensory issues. When she gets to know him a little better, she will start him on therapeutic listening.

This is by far the most exciting time in our life! We are finally getting answers. We are finally getting somewhere!!