Sensory Processing Disorder

Discovering that Cole had Sensory Processing Disorder was a huge answer to all of his delays and his nystagmus. Previous to the diagnosis, none of it really made sense or fit together. It was frustrating to me to not have an answer, but when it came it made perfect sense! As Logan continued in his speech therapy we started to see some things that related to Sensory issues as well. Logan went to school at 3 so he wasn't diagnosed with SPD. That's another blog.

I am by no means an expert on SPD. All I can share is what I have learned thus far in my journey with my boys. I did a lot of reading online and google searching of SPD. I found a few websites that were helpful including Sensory-Processing-Disorder.com. Marcia told me about the book The Out of Sync Child. Also the book Sensational Kids really helped me. Actually, Sensational Kids is probably the best resource for a parent that I have found. It is written by an OT and gives examples and ways to help your kids. I refer to it often still and try and recommend it to all parents I meet who have kids with sensory issues....or think they have kids with sensory issues. Sensational Kids lead me to the SPDNetwork website. Which is also a great resource. It also helped that Marcia was specially trained in recognizing Sensory Processing Disorder. Not all OT's have the knowledge they should about SPD. That is something to be aware of when working with an OT. Marcia and the other resources really helped answer a lot of my questions.

That being said, SPD is an answer, but not a diagnosis YET. The SPDFoundation is working hard on getting SPD recognized by the DSM. You can read about it here. This comes into play with insurance coverage. My boys therapy was covered until they were 3 by Early Intervention. They had the diagnosis of "Developmental Delay". After 3, they are referred to the public school system ESE Pre Kindergarten. (see ESE PK Blog) From their the public school system aids in their therapy, but insurance does not cover anything if the only diagnosis is "Sensory Processing Disorder".

SPD looks different in all kids. Logan and Cole have different struggles with SPD. Logan's we saw as more of a hyper-sensitivity. He was OVER sensitive to things like long pants, coats, and was very particular about what he wore (for awhile he liked only shirts with stripes....that was fun). He was so sensitive that he would have a screaming, crying, over the top, temper tantrum if I made him wear long pants or his coat when it was cold. (good thing we live in FL!) He was also OVER sensitive to sound...in loud, confusing environments he would have meltdowns. I saw this when we went to a church and the music was loud. He had such a fit, that Whit gave him some headphones to wear. That fixed it and he was fine as long as he had those headphones on. Logan has learned to cope with a lot of these sensitivities. Every year when it gets cold we have the same fight about pants, but the temper tantrums are replaced by whining. He gets home from school and immediately finds some "little pants" to wear and he's happy. It takes him awhile to get used to wearing long sleeves, but he likes it now. He did destroy his long sleeve shirt last year by chewing the sleeve cuffs to pieces....maybe some hidden aggravation with that sensation on his arms....or stress from school. (that's another blog too) He still does not like loud sounds but has learned to cover his ears....for some reason the sound of bath water really bugs him at times. And he likes to inform his Sound Engineer Daddy that "it's not too loud now" when we are in church. So, hopefully, now that he is older he is learning to cope with these sensitivities. But when he was younger 3-4 range it was a nightmare that I would rather not live through again!

Cole has struggled with a few different things. Mostly he was Hypo-sensitive or under sensitive to his environment. When Marcia first started working with him he was completely unaware of the size of his environment. His favorite thing to do was lay on the floor and play with cars but he only played in a small area. Marcia started working with him to expand his appreciation for the vastness of his environment. Of course, she used cars to get him to have fun! :) Cole was also terrified of swinging and moving. Marcia did a lot of swinging and spinning with him. We learned that when Cole was having a temper tantrum a quick spin in Mommy's arms did wonders. (My cousins daughters, who I babysat the summer we worked through this, were my expert spinners :) Soon, he loved and craved the spinning and swinging. With the therapy his nystagmus was steadily decreasing and we were seeing less and less of his head tilt/null spot look. The first time I realized that SPD truly fit Cole was when he had a double ear infection and he literally tipped over (like I'm a little teapot). He could not stand to walk and was so dizzy. It hit me hard, but also confirmed things that Marcia was saying about the Vestibular system and Nystagmus being connected. Cole made HUGE improvements with Marcia and I will NEVER regret having him evaluated so early!

Therapy Begins!

Logan and Cole began their various therapies in January of 2006. We discovered that Logan was quite delayed with his speech which was still a surprise for us. Nikki from PTS was a God-send to us. Not only was she very helpful to Logan in teaching him new words and working with his low tone in his cheeks, she also became a good friend to me. As a mom it's difficult to watch your child go through something so hard. It's didiscouraging and when they are so young you wonder what the future holds for them. Nikki was great at listening to my fears and encouraging me that I was doing a good job as his mom. So, in a sense, she was also my therapist! ;)

Logan's speech therapy looked a lot like play time. She worked with him on words and vocabulary. She also used things like frozen pops and whistles and bubbles to teach him to use his mouth muscles. Logan enjoyed therapy for the most part. Nikki didn't hesitate to push Logan so that he would be challenged. Nikki was probably one of the few people who got to see Logan have a temper tantrum like what I would see at home.

When Cole was evaluated by the Early Intervention specialists, we discovered he was very delayed with meeting his milestones and especially his gross motor skills. In January, Cole started Physical therapy with Leah. His therapy also looked like play most of the time. Leah was very gentle and loving with Cole, but he cried a lot of times when he had to do something. Cole was 8 months old when he started therapy and at 8 months he was still not rolling over. So we first working on rolling, then sitting, standing and walking etc.

After attending Logan's speech therapy sessions, I asked about Cole and his speech development. We had some struggles with feeding him food. So Nikki evaluated Cole for me and found that he qualified for speech therapy as well. Finally, Leah also recommended that we get Cole evaluated for Occupational Therapy.

Cole's first Occupational Therapist wasn't very good. But she was quickly replaced by someone who literally changed my life. I say that often and I hope it's not giving her too much credit or exaggerating, but this OT answered all the questions I had for Cole. Up until meeting Marcia, we didn't have any sort of idea about why Cole was so delayed in so many areas of his development and we didn't know why he had the nystagmus. Marcia worked with Cole twice a week for over a year. During that time we saw huge improvements with Cole. Marcia explained that Cole had signs of Sensory Processing Disorder or Sensory Integration Disorder.
His problems stemmed from a problem with his Vestibular System. In fact, one of the ways that you diagnose a problem with the vestibular system is by looking to see what type of EYE movement the patient has. EYE MOVEMENT or NYSTAGMUS! This was a light bulb moment for me. From there I tried to learn more about SPD and all that it includes.