Sensory Processing Disorder and Autism

Noah turned 3 today. To most people he seems no different than any other rambunctious 3 year old out there, but to those who know him closest there is more going on.
Noah started life as a healthy 8 pound 2 oz baby boy on May 17th, 2005. From the start he didn't like to be swaddled, and really hated riding in the car. Didn't think much of it, just thought he was a more high maintenance baby. Noah was late to roll, late to sit, late to crawl and late to walk and talk. Pediatrician just chalked it up to him being a big baby.
Noah could not handle any sort of solid food at all for the first year, he choked badly more than once as we tried to introduce things every other baby was eating with no problems.
Fast forward to now, what we know now is with SPD Noah's brain isn't communicating with his senses very well. In other words things are sensed normally but processed differently.
Here's a definition for ya:
Sensory integration is the ability to take in information through the senses of touch, movement, smell, taste, vision, and hearing, and to combine the resulting perceptions with prior information, memories, and knowledge already stored in the brain, in order to derive coherent meaning from processing the stimuli.

The mid-brain and brainstem regions of the central nervous system are early centers in the processing pathway for sensory integration. These brain regions are involved in processes including coordination, attention, arousal, and autonomic function. After sensory information passes through these centers, it is then routed to brain regions responsible for emotions, memory, and higher level cognitive functions.

In our case, although not officially diagnosed yet, Noah also has symptoms of Asperger's syndrome, a high functioning form of autism.

Noah has trouble with his motor skills, things like dressing, eating, peddling his tricycle, even running without falling. He has sleep problems and unusual phobias and fears. He is what most would call a picky eater, but it has to do with his dislike of having different textures in his mouth.
Noah is a sensory seeker, always looking to bump, mash, crush and get lots of physical stimulation, often this presents itself as bad behaviour.

Stay tuned for more on this lense - with an SPD child there isn't much time for writing Squidoo lenses!

As I said getting here uninterrupted is a challenge these days, but all is quiet, the kids are asleep so here we go...
Something interesting has happened over the last week with Noah. He had been getting physical therapy twice a week and occupational therapy twice a week and when he turned three all of that changed.
His services were being provided through the Arizona Early Intervention Program known as AZEIP, but when a child turns three they either are turned over to Arizona Long Term Health Care or ALTHC or they go into the school system.
So while Noah has qualified to go to Special Preschool Education classes, they are out for the summer and they don't start back up until August, so he's in limbo! He's been assessed by ALTHC but you know how paperwork and redtape goes, so what has happened is our first week of no therapy.
In just this short time, Noah has regressed back to pushing and hitting his sister, running and yelling out of control, having huge difficulties in focusing and paying attention to what he's being asked, and lots more melt down behaviours.
I must confess, we got a little lax in the things we were to be doing with him, such as brushing and joint compression therapy. What is that you say? Well... every 2 hours while he's awake we have a special brush that we are to use head to toe on him for two minutes, and afterwards we are to go through each little joint gently stretching and tugging, here's a better explanation...

Sensory Integration/Occupational Therapy Recommendations

BRUSHING/JOINT COMPRESSION TECHNIQUE:

Purpose: to provide deep tactile input to help organize sensory system, increase focus and level of alertness. It is best to provide technique daily every two hours and prior to activities that may facilitate fear, anxiety, or resistance.

Item needed: surgical brush (may substitute by using bath brush (at Dollar Tree) that looks just like the surgical brush or use opened flat palm side of your hand)

Procedure:

1. Using surgical brush, apply firm continuous deep pressure as you brush from the finger tips toward shoulder. Repeat this ten times, ( as tolerated). Always start at the fingers and end at the shoulder. (Avoid brushing face and stomach).

2. After brushing, apply deep joint compression to shoulder, elbow, & wrist. Make sure child remains still, joints are in alignment. Hold joint and apply pressure for the count of ten.

3. Lastly, apply joint compression to both shoulders at the same time, on top of the head, and lastly, firm pressure above lip using finger tip.

4. This technique can also be applied to legs and feet. Apply pressure to hips, knees, ankles & feet.

Suggestions:

gradually increase tolerance to technique, ie.. apply 3 strokes with brush followed by joint compression. Do not try to force child to except technique. Try to slowly start out then gradually increase the frequency.
try to be sneaky in your approach, for example... as child is engaged with play activity apply input to legs
allow child to apply his own brushing at times if desired. This is not an effective substitute approach.
introduce brush during play time, ie., shaving cream
other activities: inside barrel with pillows wedged around child, hot dog game where roll child in blanket tightly and rock rhythmically, quit box with music or textures to regroup self, bean bag chair to rock rhythmically with deep pressure applied, loofah brush in shower

Now when we do this we see a calming effect in Noah, it's quite amazing actually.
Other things he was doing in his therapies were swinging in a blanket (takes two people and a strong blanket) and as we swing we bounce him against the side of the couch. he also likes jumping on his mini trampoline and crashing into a pile of pillows, and we have a swivel rocker and he loves spinning around and around - to the point where it would probably make you or I throw up! Not him!
We've also done obstacle courses, crawling through a soft tunnel, balance beam walking, walking on his hands with someone holding his feet up, and lots of swinging in different types of swings (the PT's office has wonderful variety).

So we hope we are back in the swing (no pun intended) of therapy again next week and life gets smoother once again in our little household.

Let me know in the guestbook what you would like to see me write about next!

So I am by no means an expert on all this stuff yet - but I'm learning to follow along with the "system". We learned so late that Noah was Sensory challenged that he only had 5 weeks before he turned 3, apparently this is the magic age where everything changes... ok sure...

So Noah turned 3 and his early intervention services stopped, so he went from having 2 occupational therapy appointments and 2 physical therapy appointments per week to zero! It was quite a drop and shock and we saw changes fairly quick.

Without his therapy we saw a regression in the behavioural issues Noah has. More tantrums and melt downs, more aggressiveness to his sister, and more "neediness". So at least we know the therapy is doing something for him!

So now we have started back up again, Noah got his same Occupational therapist back and his same physical therapist - both who love him to pieces!

Noah is a cute kid. He is very verbal and a communicator so to the untrained eye he would seem "normal". So when we go to the grocery store and Noah is wearing his special backpack with a tail for me to keep hold of him, I get dirty looks. When we go out to places and Noah has a meltdown over not getting to do something his way< I get dirty looks... and the list goes on.

Most people have no idea that Sensory Processing Disorder even exists! I'm hoping by writing our experiences I can start to educate if even a few to start spreading the word, these kids aren't just a new generation of brats! This is a very real thing.

One thing I've learned about SPD is nothing happens quickly when it comes to getting help.
It took us months to see a pediatric psychologist who finally told us what we really already knew... Noah has PDD-NOS or Pervasive Developmental Delay Not Otherwise Specified... meaning he's on the autism spectrum but not clearly defined.

There is no official diagnosis called SPD we're told and this is where they lump kids with SPD.

Ok fine so we have that, it hasn't changed anything really. Noah is going to PEEC which is our local special education pre school program. He gets to take the bus and attends 3 times a week for 2 hours, this has been great! He loves it!

He still goes to physical therapy once a week but has lost his occupational therapist which is a bit distressing.

Things we've incorporated at home... a Stokke Trip Trap chair, this is awesome! He feels grounded and secure and it has helped his eating issues. We went back to fat little forks and spoons also and he is utilizing that better.

We got a second mini trampoline so baby sister can jump too!

We're in the process of having a foam block mountain made, this is sewn up inside two large sheets... really can't want for this!

My mom is now making weighted vests and swing blankets if anyone is looking for a source to purchase those, just send me an email at danni@udderlygoodstuff.com

So the point of chapter 4 is that things are and do get better! We see progress and it's exciting!

Wow, it is truly amazing how quickly time goes by these days. Since I last wrote we made a major move to Reno, Nevada. My husband got a job after 3 years of unemployment. I am really thankful we got such a great foundation for the work we needed to do with Noah because once we moved Nevada was less than helpful in assisting us in services.
We found a fantastic private school which we enrolled Noah in. They were made aware of his issues but he was fully integrated with the other kindergardners. When he initially tested he was at the low end of skills needed. He could not hold a pencil, could not use scissors and had limited recognition of letters and numbers. His teacher, Miss Terry, was amazing! She was more than willing to work as a team with me.
Through the school year Noah progressed slowly, in January we had a conference and Miss Terry was concerned that Noah was not getting the concepts and still struggling.
Fast forward to the end of the school year... Miss Terry met with me one morning with tears in her eyes. She had been using Noah as a focus student for her continued education classes. She showed me his sample work from the beginning of the year, it was illegible and the picture he drew was a few lines and shapes on the page. His end of year sample included a very detailed self portrait, complete with his toys in his hands and full outfit, you could see it was definitely Noah! Below the picture it had the words "I like to write so I can tell my stories". While the writing was not perfect, it was readable and it was on the lines and it was simply beautiful!
My little boy had made it. He didn't just get through Kindergarden, he reached grade level and in areas even surpassed it! He can now not only hold his pencil but he can write words that make sense. He can not only hold the scissors, he can cut out wonderful art projects. With certificate in hand, my little boy, who was not expected to get through school at grade level has excelled and exceeded expectations.
So in case you can't tell I'm a very happy and proud mom. When we could not find or afford suitable therapy we enrolled Noah in a program at the school called Kiddin' Around. They do very active play in themes. This was a weekly occurence and of course Noah loved it. We also enrolled Noah in Martial Arts.
Martial Arts has been amazing for Noah! Not only has it helped him with his gross motor skills, balance and self control, it has given him the physical input he thrives on. Just the other day he got to practice grappling techniques... that is a sort of wrestling done with another person, where you trap the person and they have to break free. Noah has been wanting to practice this a lot with his sister!
If you have a Martial arts studio nearby I highly recommend looking into their classes for kids. Many of them are very aware how martial arts can help kids with not only Sensory issues but ADHD and other issues. It's not about learning to fight, it's about self control, focus, self defense and physical fitness. Noah will be testing for his gold belt next week, another huge accomplishment!
In closing, I want to say I'm sorry for staying gone so long. This topic deserves much more attention. Look for more updates soon!

I thought it was time for an update on Noah. Since leaving Arizona and the amazing services we were able to get there with the Early Intervention Program, it has been a bit of an uphill climb since moving to Nevada. Noah had an IEP when he went to the preschool in Tucson, AZ. When we moved up to Reno I didn't get much assistance with getting the IEP updated and since we were in private kindergarten I confess to dropping the ball as his teacher was amazing in working with his issues and me as a team.
We have now moved to Las Vegas, NV. We are no longer near a private school we can put him in without a long drive or a lot of money. So we are trying 1st grade with the public school system which I am assured is one of the best for special needs children. Since registering Noah back in late August I started pressing the issue of getting his IEP back in place and getting him services. I was told over and over if he already had one I needed to get a copy of it. I was hitting my head against a wall as no one seemed to know where it was located by this time. I continued to press the issue that it would need complete re-assessment anyways can we start the process - nope no help.
Finally I was able to reach someone who found Noah's file had been put into storage... yeah! The school nurse is actually the one who finally facilitated working with the previous district to get the IEP faxed up to his current school... only to be told it was expired. Well shoot I could have told them that! She said we would have to start the process all over and it could be time consuming. I went home and did a little research and found that there are Federal Laws around a parent requesting their child get assessed and the time frame the school has to comply. Don't let the schools tell you no! They HAVE to do this within 60 days and some states, like Nevada, 45 days. I am scheduling a meeting with the principal as we speak since I requested this more than 45 days ago already and nothing was done until now.
Be your child's advocate and don't take no for an answer! I was actually told well there are a lot of autistic children in our school without an IEP. As if that makes it ok. Noah has already been treated as a bit of a problem child with losing recesses and getting disciplined for behaviors instead of rewarded for doing things and building on positive reinforcement. He has been bullied on the playground and called names. still he continues to be loving, kind and just an amazing kid all around.
I will update as we get through this process. I hope my struggles give some inspiration to others struggling with dealing with governmental bureaucracy as it isn't a fun thing to do!