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.

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Aug 31, 2008
by: katie

My son (5 yrs. old)too was diagnosed with SPD. He has some slightly different actions. He is very active, goes up to strangers and gives them hugs(scary), doesn't really understand certain things I say to him, has a very hard time listening,this is were the behavior problems come in. He does see an occupational therapist and it seems to help, she also gave me a type of plastic brush. I brush his arms and legs and back with it and then I do compression on his limbs. After 2 weeks of this, I saw a huge difference. He was a lot calmer. I also took him off of wheat and gluten foods, big difference as well. Now my problem is trying to figure out where to put him for school. I'm not sure he is ready for a public school. Do you have any suggestions on schools for this type of disability?

I hope some of the things I wrote help you also.


Apr 28, 2008
Hang in there!
by: Tracie

My son Clayton is 5 now, speech has come along way (we are working on blended letter sounds!). I know what you are going through because we too go through the head banging (check his ears- Clayton needed tubes; since they were placed it has slowed this behavior alot!).

Clayton also jumps on furniture, or whatever he can- he even jumps up and down if he is watching t.v. or playing a learning game. He cannot sit still- if he is still, we know he is sick. We just put out a large trampoline to replace our small one he has outgrown- hoping to save the furniture.

A lot of the behaviors sound similar and I don't have answers for you except to change up whatever you are doing when it doesn't work for you anymore... i.e.- we recently removed Clayton from gymnastics because after a year of doing this he wasn't interested anymore. The instructors wanted to keep him in a toddler group because he really just wanted to jump on the trampoline instead of all the other activites. I want him in age appropriate activites. We changed to open swimming and he is loving it and asking to go often. Soccer- we tried for 3 seasons- he is not a soccer player but hikes and jogs with me and our family dog- he loves this. Maybe he will be a crosscountry runner!

I got tired real fast of people who are out there to help children be their best giving up on my son because they didn't want to deal with his issues- so I now do more one on one activities or open play activities. Clayton is happier and I am a whole lot less stressed out!!!

In the future you may have some other issues. We are now facing stranger danger. My son doesn't get this at all- he likes to hide and run from people. He goes right up to strangers and says they are his friends- he knows them!! This is so scary and we just keep trying to teach him saftey and pray he gets through this stage okay! Best of luck with your son- Tracie

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