Just diagnosed and not sure where to go from here

by Keri Taylor
(Havre de Grace, Maryland)

i always knew my 5 year old was different. from birth he would not go to sleep without me holding him and had to stay in my bed in order to stay asleep all night. i figured it was because he was a baby and he would grow out of it. he never did and even now has to fall asleep with me holding him and then i move him to his bed which is in my room still. at least once a week he will crawl back into bed with me for the rest of the night. he cries for no reason at all or gets very angry if there is more than one other kid at our house to play. he will also be playing and just scream for no reason which makes the other adults in the house upset because they don't understand why he does this.


if we go to stores i have to find ways to keep him occupied because if not he will just start screaming and yelling for anything he sees even if we don't need it at the time. it actually was so bad at our last shopping trip that people were giving me dirty looks and one woman made the remark to another woman that he was what happened when parents spoiled their child. it took all of my strength to not to say something to them. at school his teachers were worried something was wrong because he would fidget and sometimes fall for no reason at all. even other people in our neighborhood would notice how clumsy he is. he has gone to orthopedic doctors to see if something was wrong with his legs and had tests done to see if his equilibrium was off and everything has come back normal.

by age 4 he started seeing a therapist because his first teachers were worried because he would not stop doing anything in class to go to the bathroom and had multiple accidents in a week. he hates change and refuses to try anything new be it an activity or food. he was diagnosed last year as having adhd but i never believed that was what was going on.

after learning about SPD i gathered checklists, articles and any information i could about it and took it today with me to see if this is what he in fact had. the doctor said he does have adhd but also spd and wants to keep an eye on him over the next month and then see where to go from there. i'm thinking of taking all the information i have now to his regular pediatrician to see if he will agree to send us to an OT to see what things we could do with him to keep him calm before school starts. a friend also told me to contact his school to set up an iep meeting now so that things could be ready when he starts school back up in the fall. my only problem is that all of the OTs with an SI certificate that i could find are in the next county over and i have no transportation at all right now.

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Oct 03, 2012
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My son did the same thing
by: Anonymous

As I was reading your blog, I just could not believe anybody else went through the same screaming issues we went through with our son. My son did the screaming thing for two years (from birth to 2 years old). It was so bad, I couldnt leave the house for two years.

We are late in the diagnosis (he is 8 now)... so we are in the same boat as you.. Trying to figure out where to go from here. I hope you find the proper care for your daughter. Just know you arent alone. Having someone to talk to that understands your situation helps tremendously. Good Luck !

Jun 14, 2012
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newest update
by: Keri Taylor

after talking to his pediatrician yesterday he agreed with the diagnosis and told me to call Kennedy Krieger institute to schedule an evaluation with them to get specifics on everything. so tomorrow or monday i am making all appointments so he can get the help he needs

Jun 14, 2012
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IDENTICAL BEHAVIOUR WITH MY CHILD
by: Anonymous

Behaviour and symptoms identical. Having problems commenting on your post.
Seeing an O.T once a week to help my daughter.
Would love to speak to other Moms going through the same thing.

Jun 14, 2012
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IDENTICAL BEHAVIOUR WITH MY CHILD
by: Anonymous

Hi Keri, just reading your post - my daughter has identical habits and behaviour etc. So interesting to read another mum with the exact same info. Would love to know what is going to happen?
My daughter starts O.T in 2 weeks. Also just diagnosed.

Jun 13, 2012
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1st grader recently diagnosed
by: anom

My 1st grader son was recently diagnosed with a mild form of SPD by a private O/T and is receiving therapy once a week. I requested a meeting with the school to discuss an IEP. Within 60 days, the school performed various IQ, psychological review, o/T eval and presented the results at the IEP meeting. The conclusion is that the ot eval showed that he had SPD. My son was not eligible for an IEP because he tested at grade level and did not have a learning disability. He is receiving accomdations for the SPD.


Jun 12, 2012
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be his advocate
by: Janice

It sounds like you are doing everything correctly - wishing I had done myself. By printing articles on how the teachers can support your son, and providing those to the special education team (even though he may not need support), his regular teacher and hopefully his occupational therapist at school (not all schools have them). I even signed authorization papers so that my out side OT could speak to the teachers and vice versa - that was very helpful too. You will get social workers that doubt SPD, but my son has improved 100% over the last 4 months. Good luck! Stay strong and do nice things for yourself to keep you strong for him.

Jun 12, 2012
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RE: your son
by: Lyn

Hello! Hang in there. You are not alone. Follow your instincts. You know your son better. Good luck!

Jun 12, 2012
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newly dx
by: Anonymous

call the early intervention program in your county and ask what services (transportation) might be available - he is probably too old for early intervention but they can tell you who else to call for help.

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