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.
Jen Benton. Reprinted with
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