Jason's SPD

by Michelle
(Midlothian, IL USA)

Jason was born a month premature. He had a very rough beginning and couldn't breathe on his own. He was in the NICU for a week, was released for 5 hours, then we received a call that he needed to be hospitalized for jaundice. After a week of staying in a UV room, we left the hospital with my baby.

My first stop was Jewel, he started crying the moment we walked in the store. I just tried to comfort him, it was normal, right? Got back to the house and I had my first dirty diaper to change. I was so excited since the hospital won't allow the parents to change the baby. To my suprise Jason's diaper was full of blood. Off to the ER (one of several trips to come). He was again hospitalized for what felt like forever. He stopped eating he and lost a lot of weight; many procedures... upper G.I'S, lower G.I.'S, scopes, etc.

We saw so many doctors; cancer doctors, specialists, I myself had to go under testing for my breast milk etc. After Jason lost 5 lbs and hadn't eaten for a week, he was diagnosed with a severe milk protein allergy, and was put on Neocate, which cost $40 a can and lasted 3 1/2 days.

We didn't qualify for state help, WIC laughed at me! By the age of 1 he had been hospitalized 15 times and so many doctors had prick and poked him, he stopped crying when they drew blood or gave him shots. At the age of one he started banging his head on floors, concrete, cars... anything hard; he would bang his head several times. He wasn't talking yet or making sounds, he didn't want to be around loud sounds, he was so active though.

We signed up for a program through our school district called Best Start, a teacher would come weekly to play with Jason. After 6 months of visits she sat me down and told me she thinks Jason has a developmental delay and we should get him evaluated. After ruling out other medical diagnoses he was diagnosed with SPD.

Jason is now three. Every day is different day with Jason, we have good days and bad days. Jason has received speech, developmental, occupational, behavioral, and physical therapy for the past two years and he also was put in daycare (which he won't play with other children) to help with social skills. He has came such a long way but there is still so much to come.

He stills throws himself on the floor, he kicks, hits, jumps of furniture, screams bloody murder when we go into a store, hates crowds. He has a routine that, if I change, his whole day is off. He won't eat anything soft or mushy. Bath time is a fight, and bedtime has to start at 6 so hopefully he will be asleep by 11 or 12.

There is not a lot of help or resources, or knowledgeable people about SPD. I have bought every toy that is for sensory issues, but the most helpful has been the trampoline and swings.

Jason is getting better everyday though.