John's SPD Journey

Throughout my first (only) pregnancy, I told everyone, I was having either a kick boxer or a ballerina, because all this kid did was move. 
When John was born that didn’t change.  He was a wiggler from day one.  He rolled over in the bassinette in the hospital.  He squirmed off a queen size bed (from dead center) in literally 5 seconds before he was 3 months old. 

He loved to suckle and be swaddled.  He also would scream if he wasn’t in the vibrating bouncy seat at least 20 hours out of the day.  When we switched to “Stage 3” baby food, the chunks freaked him out.  He almost reverted to 100% bottle fed in a matter of minutes.  There was no way he was eating chunks.  He managed to adjust, but what a fight.

He started talking early (complete sentences by 15 months) and hasn’t shut up since. Day Care loved John and all his little idiosyncrasies.  No one there questioned his need to have some sort of tactile activity when it was centers time.  No one questioned his need to swing on the play ground instead of go down the slide.  No one thought twice that he was “affectionate” (touchy, feely) with everyone, because he had ALWAYS been that way.  That was “just John”.  He was completely normal as far as anyone was concerned. 

At home we had a lot of problems with following directions.  Sometimes it was as if he didn’t even hear us speaking.  My mother-in-law joked she thought he had changed his name, and didn’t tell us.  He was petrified of the vacuum, my hair dryer, fireworks.  Yet at the same time, the TV had to be blaringly loud.  He craved salty, crunchy foods.  He confused hot and cold constantly.  “Burr, it’s hot in here” – that type of thing.

Then he started Kindergarten.  John was placed with the “structured” teacher.  It was felt with his need to “talk incessantly”; she would be best able to “straighten him out”.  The first full day of Kindergarten, John was sent to the Principal’s office.  His teacher said he was disrespectful.  He made noises, rolled on the floor, fell out of his chair, constantly had to be touching someone.  He leaned against the wall when walking in the hall.  He yelled out in class.  He “refused” to raise his hand or wait his turn.  He was an “egocentric” little boy and it was “all my fault”.  She was not going to “deal” with it anymore.  They also asked us to medicate him immediately, even after his pediatrician told the school he was not ADHD.

We had meeting after meeting.  The school spoke with John’s teachers at the Day Care.  The school recommended “behavioral interventions” because he was, “consciously choosing bad behaviors”.  He spent more time in the office than in class.  Consequently, my husband and I were on a first name basis with everyone from the Principal to the Dean of Students.

One evening I was crying to a friend of mine who happens to be an OT.  She listened intently at all the problems John faced in school.  The whole time, she had a slight smirk on her face.  All of the sudden she broke in with, “He has Sensory Integration Dysfunction”.  And my response was, “Huh?”  We happened to be in Barnes and Noble and she told me to buy, "The Out-of-Sync Child" by Carol Kranowitz, and she told me to ask the school to do a Sensory Evaluation on John. 

I practically read the book from cover to cover in one sitting.  It was as if the heavens had opened up and they angels were singing.  I had never understood my son so clearly.  At last he wasn’t a mystery!!  My son is “a mover and a shaker”.  He craves movement because he is under responsive to it.  He is, however, over-responsive to certain noises, such as small motors in vacuums and hair dryers.  Hallelujah, we are not crazy!!!

At our next CIMS meeting, I immediately asked for the Sensory Evaluation.  John’s teacher piped in with, “you are not allowed to ask for evaluations.  Only the committee can recommend one be performed”.  Thank God my friend had told me to be prepared for that.  I knew that by state law, they had to do any evaluation a parent asks for and it had to be complete within 30 days!  They were all shocked.

Within the month, I was sitting in a meeting with the school’s OT and she was shaking her own copy of Carol Kranowitz’s book at me, saying, “John is textbook SPD”.  I broke down in tears.  With that we were able to get a referral from the pediatrician for a private OT evaluation which led to a diagnosis, sensory-based OT three days a week for the last 6 months, and a 504 Plan at school.

My insurance would not pay for him to be treated at the Pediatric Sensory OT/PT Services in our town.  He is being treated at the Medical Center where I work.  His OT is not certified as a Sensory therapist.  However, she researches and reads everything she can get her hands on.  And she understands John and his needs.  She helped us set up his 504 at school and he has a Sensory Diet that is followed to the letter.  She also helped us set up a diet for home. 

We are learning every day.  John still isn’t in sync all the time with what his body needs.  He gets frustrated easily when something does not work right.  Hand writing is very difficult for him.  He is struggling with reading.  (He has a hard time deciphering letter sounds correctly.)  But he is trying.  AND, he has a wonderful first grade teacher.  She didn’t understand SPD at first.  But she has read everything I have sent her.   She includes us in every decision that is made concerning John and his routine at school.  She uses a slightly different system with John because of his disability.  However, she doesn’t single him out at all.  The only time she makes an example of him, is when he has done something great!  She and I are on a first name basis as well, but for a completely different reason than last year.

My husband works out of town during the week.  He hasn’t done the research that I have.  He listens when I explain something, but he really isn’t as in tune with John and his needs as I am.  I have enjoyed helping my husband and John’s teacher learn about SPD this year.  And I want to help others learn as well.  I want to let others know they are not alone and there is hope for your child and your sanity. 

The most important lesson I have learned that I want to share is that we have to take it one day at a time.  He will have out of sync days, where he only gets 3 out of 8 smiley faces at school.  That is OK.  We start the day fresh tomorrow. 

We still struggle with bed time.  We struggle with staying on task.  We have very wiggly days.  But he is getting better.  And he is learning more everyday about his own body and its needs. 

I love being the mom of an SPD kid.  The challenges we have conquered already make me cheer for him.  We will have uphill battles.  But I know that God is holding our hands the whole way.  We continue to go to OT 3 days a week.  We continue to work on things at home.  Our family room may look like a mini gym when we have company, but I just explain John’s needs to them. 

Submitted by Jen Benton.  Reprinted with permission.

 

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