Deeply in my heart, I had a feeling long time ago about Tommy having some type of sensory issues. The way I realized he was having some type of sensory issues it was when he began to do repetitive movements, such as, head shaking, rocking himself and sucking his tongue. My husband and I decided to take Tommy to a private paid evaluation when he was 20 month old. The evaluation didn't show any concerns at that time, it might be because he was too young.
Strange repetitive movements kept appearing, as he was getting older, such as: rolling his tongue, shooting doors, spinning, jumping on the bed. But he also stopped doing some of these repetitive movements and some of these movements where age appropriate, but I never felt they were right. Previous to that, we noticed Tommy was sensitive to some sounds, but he overcame most of the aberration for the specific sounds because we intentionally exposed him to these sounds until he could tolerate them. But we still noticed he gets over-responsive when he doesn't know where a strange sound comes from or high pitch sounds, including some people’s voice.
Understanding what pooled the trigger
I have been very optimistic and proactive since Tommy was prenatally diagnosed. This brought me to provide a sensory smart environment for him without knowing he was having Sensory Processing Disorder, so I provide the sensory balance Tommy needed during his infancy and toddler-hood. I began to see Tommy’s sensory issues, as soon as, I took the Fisher-Price bouncing zebra away because he was getting too tall for it. Around the same time, I quit giving Tommy his daily massages —they were providing the sensory input he needed. Tommy began to rock himself and rolling his tongue in an incontrollable way —this was his way to calm himself because he wasn’t getting the sensory input I was providing. I talked to our EIP team at that time about my concerns and a sensory diet was created for him. Any of us didn't noticed any serious concerned after this.
By the end of January, Tommy got very sick due to RSV and he had to be hospitalized. He spent 13 days in the hospital. Kids who are seriously ill with the RSV turn aggressive, so the best solution is “Sedation.” Being sedated enormously affected his balance and he lost strength in cord muscle, too; he couldn’t walk for several days.
Tommy received services from the EIP (Early Intervention Program) until the week before his birthday. This means he had just a month of services after he was realized from the hospital on February 2nd. Tommy used to receive aqua therapy once a week since he was 18 month old, but we stopped to taking him due to the services ended. Therefore, he suddenly stopped getting the sensory input from the aqua therapy.
Tommy had to face more changes and challenges in a short period of time after he was realized from the. He got sick again and again, and again. He hasn’t been so sick before and so often. Something wasn’t working inside his body. This was the first sign for Asthma due to RSV. While all this was happening inside his body, Tommy had to handle other big change in his life, Pre-school. School is an over stimulating environment for children that have sensory issues. This made his sensory system even more disorganized causing problems in his performance at school. When we have our firsts meeting with the school district, I mentioned the possibility of Tommy having sensory issues. Eventually, the school district decided to make an evaluation; which showed that Tommy has sensory issues.
I started to notice Tommy wasn’t the same child after the hospitalization. His repetitive movement increased. He didn’t enjoy bath time as before (it may be because this remind him the first time he took his bath at the hospital). He began to showed aggressive behaviors. His attention span decreased to almost nothing. He began having difficulty following directions. He seems deaf, but his hearing is fine and so on. Big Red Flags! Tommy needs help.
The 13 days he was at the hospital were a torture for him, too many changes and emotional situations at the same time. Therefore, his sensory system couldn't carry over all the sensory information and got completely disorganized. Additional to these, he wasn’t breathing properly for about 14 days, so his brain wasn’t receiving enough oxygen. There were a few occasions he took the mask off and fight against the nurses. While he was fighting he wasn’t getting the oxygen and he turned blue in one occasion. This was a huge transition in his life that I don't think any 3 year old can handle it so easy.
What is Sensory Processing Disorder?
I understand what sensory processing disorder is, but it is not quite easy for me to explain. Especially, when one heard that there are 7 senses instead 5 senses. But I have found this short video that explains it in an easy way.
I also found a trailer of Autistic-Alike: Graham's Story. The film makes it clear that there is a difference between autism and sensory processing disorder. Washing the little boy in this video, it is like watching Tommy because their behaviors. Please watch the video so you can understand a little bit more what families and kids go thru when a child is diagnosed with Sensory Processing Disorder.
Sensory Processing Disorder can happen to a child with a typical development or a child with developmental challenges. Please be aware of the signs.
As soon as, Tommy's sensory system get organized he will be able to easier improve in his gross motor skills, fine motor skills, social skills and attention span, so he can overcome some of the developmental challenges he is facing due to his genetic disorder.
What is the next step?
Finding what was affecting his sensory system was the next step. But before we got a private paid evaluation, which diagnosed him with Sensory Processing Disorder. I can understand now why he behaves so differently out of the house by insolating himself from other kids, family members or a big group of people. Why he is sensitive to certain type of noises. My little boy is a fighter because he is looking for ways to communicate what’s going on inside him; this is the reason why he made it up his on sing for people to rub his head when he was a year old, why he is excessive passionate about music, why he enjoys so much big cities, why he does repetitive body movements. These things calm him. Now that we have a diagnosis, we can find a treatment that will help him to overcome his sensory issues. There is HOPE!
Searching for a Certified OT. Finding a certified therapy center that specialized in sensory issues is crucial to get the right treatment. I found a specialized therapy center that is very passionate about helping kids with sensory issues, which is located at 15 minutes from my house and 1 minute from Tommy's school.
Working with the school and daycare. We need the cooperation of the School and daycare staff for Helping Tommy to overcome his sensory issues so he can be successful in any environment. Our OT will be leading the strategies that should be implemented at home, school and extended care, so Tommy can meet the goal of over coming his sensory issues in approximately a year and half or so.
Going back to the old days. I will retake the activities that were providing a calming effect on Tommy to deal with his sensory issues. Those are:
- Therapy massages. I will massage him daily with deep pressure as I used to do it before — they are great to increase blood oxygen that will help him to be more calm and pay better attention because the brain will get more oxygen.
- Swimming. This is a great activity for Tommy getting the sensory input he needs. Once a week, we will take Tommy to the swimming pool as we used to do it before. I started last week, and he enjoyed so much. I found a great source that will guide me on how to teach swimming to Tommy.
- Sensory Smart Environment. Finding new toys that can please Tommy’s sickness for movement. So he can get the sensory input he needs by himself. Follow the sensory diet and create a sensory box I can carry with me everywhere we go, so I can help him to calm in any enviroment.
Sleep Test. I will request a sleep test. I know the doctors were not concern by the time he was realized from the hospital because his lower oxygen level while sleeping was 96%. I even asked if he needed a Peak Flow Meter to read his oxygen levels at home, but the doctor said that it wasn’t necessary for him. But I want to make sure Tommy is receiving enough oxygen in his brain because this essential to function and pay attention.
I believe in my son's potential. I keep praying for wisdom
and finding new ways to help him. I will never give up on him.
I keep my high expectations for him because the sky is the limit.
Any challenge is a predicament, any sacrifice is enough.
This is what unconditional love is about.
