Friday, January 18, 2008

More to the Story

So, to move on with our story...

The kids began to get into routine with therapy, well everyone except for Kynsie. For in-home therapy, she would scream as soon as the therapist (very sweet women) walked in the door and she avoided each of them like the plague. IF they touched her or tried playing with her, she had a melt down of epic proportions. The boys became accustomed to the in-home therapy and adjusted fine but made virtually no progress. At the same time, Kynsie & Kyan were going to occupational therapy 1 hour per week each at a local therapy center. Kyan was very fussy but he did manage to get through 50 minutes each week. Kynsie on the other hand would scream and cry until she began to reflux, which hurt-causing more crying-more reflux--more crying...and on and on every week for 50 minutes. It was miserable for all parties. Again, she was making no progress, and she was terrified of everything that was somewhat related to therapy. *Note* it would be easy to assume that this is merely bad behavior, that could easily be remedied with a swat on the behind. But that would be wrong. This behavior in particular is a sensory overload meltdown.

Many kids on the Autistic Spectrum (if not most) have some degree of Sensory Integration Dysfunction. What does that mean? Basically the senses that our bodies use to tell us about our surroundings (sight, hearing, smell, taste, feeling) are all misfiring and giving the brain bad information or at best, incomplete information. As a result, the body tends to react with a fight or flight response because the child's brain is telling the body that there is danger.

What does SID feel like? Well, here's a nutshell version. Have you ever owned a pair of pants hat was so tight that when you wore them, you could barely concentrate. Or--have you ever been to a rock concert where the music was so loud you could feel the sound waves vibrating your 'insides'? Have you ever gone into a Candle store or perfume section only to experience a headache, nausea or burning eyes from the intense smell? Or--have you ever been to a UT game or a mall on Christmas Eve, and felt the crowd begin to swallow you? Have you ever eaten something and the texture just gave you the willies--oatmeal, bananas, couscous??? Have you ever been in the ocean for a long period of time, and once you get back on dry land, you could still feel the waves? Take all of that and combine it.

That is what many children with Sensory Integration Disorder deal with every day. Their clothes feel weird. They are too tight, or too itchy. Tags are a HUGE source of distraction and discomfort. Their food feels weird. They may gag and even vomit when given chunky foods or crunchy foods. Some can't handle purees or anything with a strong flavor. Again, this is not picky eating. This is a child with a sensory problem. Everything has an odd smell or texture. Some kids avoid people wearing strong cologne because it 'hurts' them. Sounds are louder, and lights are brighter. Mandy kids with SID have very sensitive eyes. They constantly squint when outdoors and may even avoid outdoors all together.

Kids with Sensory Integration Dysfunction are generally either over-sensitive or under-sensitive to stimuli. Some are both. For example, Kyan's mouth is overly sensitive to tooth brushing. He gags and just really has a hard time. On the flip-side, he crams food in his mouth well beyond capacity b/c he can not feel that his mouth is full. Some children have significantly reduced ability to feel pain. Some of them beat their heads against walls, or the floor until they are a bloody mess...and yet they don't seem to register the pain. Or, they can not feel food in their mouth properly, so rather than eating 3 or 4 cheerios at a time, they cram fistfuls in until they look like a chipmunk. Sensory seekers--their body does not give them an appropriate amount of sensory input to let it know where it is in space, and what is going on around it. So, the child may stomp his feet or twirl, or rock or want to swing incessantly in order to get that proprioceptive or vestibular input.

More about proprioception

Please know that I have only scratched the surface with this disorder. I have only touched on a few of the issues that it encompasses. SID or SPD (Sensory Integration Disorder & Sensory Processing Disorder are interchangeable terms) looks very different in each individual. Kyan and Kynsie both have Sensory Processing issues. They even shared the womb, but their issues are not the same. This sort of body 'disorientation' or confusion that results from Sensory processing dysfunction is what millions of children experience every day. As a result, unfortunately, many are misdiagnosed or labeled as bad kids, hyper-active, ADD etc. when in truth, some are simply overwhelmed and do not know how to help themselves. *Note--I am not in any way denying the legitimacy of an ADD or ADHD diagnosis. Simply noting that kids with SID are frequently misdiagnosed.

Wal-mart is hell on earth for children with Sensory Integration Disorder. So the next time you are in Wal-mart or any other loud, smelly, overcrowded, bright, over-stimulating place, (chuck e cheese) if you see a child who is having a melt-down of epic proportions, take a moment to pause.
Before you instinctively give the mom a sideways glance that communicates that she should get a grip on her child, while muttering under your breath that what that child needs is a 'good spanking'. Before you pat yourself on the back thinking My child would never act that way. No Sir! Before you stop and stare and roll your eyes to other passers by, PLEASE CONSIDER that her child may have a neurological problem. After all, 1 in 150 kids now has Autism. 1 in 66 boys now has Autism. So the odds are pretty good that the child who is losing it in Sensory-overload land, just might be one of them.
In spite of what one might be tempted to believe, a spanking will not 'fix' a neurological disorder. And unless a child on the spectrum is SEVERELY autistic, it is virtually impossible to tell by looking. After all, my kids look normal, right? So give the parent and the child the benefit of the doubt. Say a prayer and give a smile to the mom. I assure you, she gets enough bad looks to last a life time, and she probably has more parenting skills than all of us combined. She simply isn't on a level playing field with parents of neurotypical kids, so the outcome isn't the same. Think about it.

This happened to me. Patty and I took the munchkins to the mall to get "Big Kid" shoes. They had always worn Robeez , but we wanted to try hard-soled shoes. So, we went to the mall for a fun adventure to Stride Rite. Braylen put on his big boy shoes and LOVED them. (He does not have sensory dysfunction) He acted like a 'normal' child and walked around checking out his new kicks. Kyan was totally freaked out by having his foot measured and by wearing the shoes. he cried and cried, but as soon as the shoes came off, he calmed somewhat and was finally able to regroup. Kynsie on the other hand, began shrieking at the top of her lungs when the nice lady touched her foot. She was terrified. Once we finally got the shoes on, the volume went up and the look in her eyes was pitiful. HUGE tears. Had I come at her with a 6 inch needle, she would not have been more frightened. She continued SCREAMING. People in the mall stopped and stared. I was embarrassed, but I also felt sorry for her because she could not help it. She kept crying LONG after the shoes were off and the lady was gone. She just couldn't regroup. (this is a regular occurrence for kids with sensory processing issues. the do not calm or soothe easily) It was really sad.
Days later, I had the new shoes out and let them just see them. I put Kynsie on my lap, and as soon as I opened the Velcro, she lost it all over again. Same traumatized response. It took us 3 months to get her to be able to wear her big girl shoes. (Side note--now she loves them) At the time, I remember being so jealous of my friends who never gave shoes a second thought. Oh the things we take for granted.

If you become concerned about your child, in the state of TN, testing and therapy are free for children under age 3. You can call TEIS (TN Early Intervention System) and they will arrange for a thorough evaluation of your child/children. There are no financial qualifications for this service. These folks are great. If you are concerned, get the evaluation. Most states offer comparable problems. Worst-case scenario, you find that your child needs treatment and you get started early on, which is the best for your child. Best case scenario, you waste an hour or two getting your child evaluated and you leave having alleviated any concerns about your child's developmental progress. It is important to note that these evaluations are comprehensive and cover speech and physical delays as well.

Ok, so I kind of got side-tracked, but I felt it would be useless to go on with the story without explaining SID. Next time I will tell you what happened with therapy, and how we got introduced to Dr. Adams, and absolute miracle-worker in our lives.
Stay Tuned....


a wandering heart said...

Wow. I am praying for you guys. One of my friends has been struggling with her 6 year old daughter and just recently learned it may be due to a sensory disorder. I will send her to your blog. She also has 4 kids 6 and under, not that same is triplets, but she can probably relate even more than most of us with just one!


pmm said...

Not sure if you remember me, but we worked together at C-N. And also not sure if you knew this or not, but my younger son B has been diagnosed with SID/SPD and Asperger's. Early intervention has worked miracles for him, and i'm glad your precious ones are in treatment. If you ever need to vent to an understanding ear, please don't hesitate to drop me a note. You and yours have been and will remain in my prayers.
All Best,
Paige M-M

Hilary said...

The shoe thing reminded me of myself as a kid. Not that I melted down in public all the time, but I remember being very particular about the way my socks fit when I put on my shoes as a kid. When I think about it now, I realize how patient my parents were. If Malcolm sat in the floor messing with his shoes and socks as long as I remember doing it as a child to get it "right", I would accuse him of stalling or rebelling. But I remember my feet really hurting and being very sensitive if my socks didn't fit right. In fact, my mom was very particular about which socks she bought because some I just could not wear. I understand that's not really anything like what you are experiencing, but it goes back to the whole just because a kid is acting up doesn't mean the kid is bad. Maybe the kid really is uncomfortable in the very least. Most parents would have dragged me out of the house screaming because my socks didn't fit right and told me to get over it. Luckily I had parents who stuck it out until things were right. So hang in there, your kids will appreciate all you are doing for them later.