Dawn Robinson (mom and RN)

by Dawn Robinson
(Newark, DE)

I noticed something different about my non risk taking well behaved toddler some time ago. My concerns were expressed to the Pediatrician but I was told "oh he'll be fine" I was told many children and adults have sensory issues. I lost my job when Nicholas was 4. Had trouble obtaining a Mon-Fri nursing position. Well, thank God. Nicholas' medical issues and developmental issues were worse than i thought. Working full time as a single parent gave me limited time with him and daycare doesn't report everything. Over the last 2 years I have had to spend so much time advocating and demanding something be done for my sick child who still could not perfprm ADLs like he should. I would never have been able to do that if I was still working full time with my high stress job.

During this time I found that in addition to Asthma, my son has Gastroparesis and Dismotility. When this was on the way to being better and controlled and was sick less, he was diagnosed with Sensory Integration Disorder. He was having melt downs in school due to sensory overload. I was referred to a Developmental Optometrist by other parents with children with optical issues and disorders. Dec 2011 Nicholas was diagnosed.

It is extremely difficult. Medical issues, therapies and the financial burden. I do everything humanly possible no matter how much I have to use my credit card. It is worth it b/c the eye therapy, OT and chiropractor are all benefiting him. Most of the problem is the sensitivity. He is very emotional and feels deeply like me, but has trouble controlling .

Play therapy has also been helpful. We have appts every day sometimes. It is exhausting. He is a wonderful and intelligent child and it is worth it. He does well academically so he was denied school therapy for his physical challenges. I feel like I will be fighting for his rights for the next 12 yrs. until he is 18. Many people do not understand the disorder so it is ignored. I have been accused of making this up and giving him medication that is not needed b/c he seems fine and healthy on the surface. There seems to be no end but I will never stop fighting.

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