Benjamin was not even 3 yet. The Sunday paper had a great big article on autism. Coming from a family of special education teachers, it caught my eye. I became alarmed as I read the check off list.
Delayed speech ...check
Little to no eye contact ...check
Little or no response to name ...check
Appears deaf at times ...check (he'd had his hearing checked 6 times before his 2nd birthday because of this trait)
Plays alone in a group of kids ...double check ...unless he can hide in a closet ..then he won't even parrallel play
Robotic speech ...check
by this time, I was terrified. We'd already had so much going on with him ... starting at less than a week old.
Self stimulating behavior ...check ..but that was the first time I could put a label on his constant spinning, banging into walls and hand flapping.
Inflexibility (routine oriented) ... CHECK
Moves constantly ...check, double check and triple check ... this was one way he earned his nickname Tazmanian Devil
Reactive to sounds, lights, textures, smells and flavors ...HUGE CHECK
He had all that and then some. He threw up daily because of his sense of smell, taste and reaction to textures of food in his mouth. He would not ..could not ..mix textures. No casseroles, no sausage biscuit, no biscuits and gravy, hamburgers were taken apart to eat .an if food was mixed ... there was no way in God's green earth it was going to be eaten by him.
He could only wear clothes of certain textures and socks were pulled over the toes on top of them because the seam of the sock was unbearable.
The next morning I called the family doctor for an appt. I couldn't talk. I handed him the newspaper and this giant, gentle man had been standing and suddenly was sitting down ...with a bit of color lost in his face.
He said it was all too possible. He would make an appointment for him to see the neurologist (Benjamin had been with a neuro since he was 2.5 months old)
We got into the neuro the next day.Again, I couldn't talk. I showed him the article and he looked at me, looked at Benjamin and said he'd be referrring us to a pediatric psychologist and a developmental pediatrician. The Developmental Pediatrician, just down the hall from the neuro (in Children's Medical Center) just happened to have an opening right then because of a cancelation. The neuro went with us to her exam room. We gave her a history ..thank goodness he was there, I was rather stunned.
The neuro left and she started to exam my son.
She said to keep the appointment with the pediatric psychologist. She'd do a full developmental eval, but, yes, the diagnosis is Pervasive Developmental Disorder -NOS. I had no idea how familiar I'd become with the new letters in our family's alphabet soup.
The developmental pediatrician gave us the CARS ...Childhood Autistic Rating Scale.
One of the most alarming symptoms that we'd found odd was his lack of response to pain. None ... he'd grab my hot curling iron and never react .. a few days later I'd find an infected burn. He'd try to reach his hand into boiling water to get at the potatoes or into an oven to get at the chicken. Thankfully he never succeeded at those, I was on constant alert if he was awake ...but, one time I did get a rather uncomfortable and nasty break to one of the bones in my feet when I realized he'd gotten a chair to the stove and spaghetti was being boiled. I tripped and down I went, which distracted him
When the evaluation was done ... which was a full 8 hours, done over 4 days in 2 hour segments ... she sat my husband and I down. She explained that the CARS had a scale of 1 to 60. 30 to 60 was autistic, and 20 to 29 was autistic characteristics. Benjamin scored a 39. Well into the autism range.
We then went into high gear. No internet in those days, but I stillmanaged to learn probably more than I could learn now. I joined the Autism Society, a mom's group and they increased his speech therapy to 2 times a week and OT to 3 times, and PT from 2 times a month to 1 time a week.
We learned about ABA and Sensory integration therapy in OT .. we worked hard.
After several years ... he was in the first grade (without an IEP but that's a story for another day) I realized that everytime I brought up the Sensory integration therapy his OT changed the subject. Frustrated, I decided to find out more. I was angry and frustrated that for 6 years we thought we were getting SID therapy in addition to regular therapy and he was only getting standard OT.
I was frustrated, angry and scared .. I went to my physical therapy for a post operative session and the therapist was asking about Benjamin. He then asked me if I'd talk to the pediatrician about moving his therapy to that place. I did, he did and so ...we did.
SID therapy was 2 times a week, standard OT (including using handwriting without tears).
We saw remarkable improvements. One of my main desires for this child would be his sensitive stomach ... any strong smell, good or bad, resulted in his throwing up. Daily he threw up. All I could think of was that no one should have to throw up every day. And we were dealing with Barrett's Esophogus with my husband and I couldn't help but wonder if he was not at risk for that as an adult.
During this time I was a very frustrated (and scared) mother. I'd go to the autism chapter meetings and the autism diagnosis made sense. I'd read books about it and it would make sense. I'd talk with other mom's of children with autism,and it would make sense. I'd talk with the doctor's and it made sense, and I'd look at Benjamin and it didn't make sense. (I'd said this to friends on many occassions)
We did so much in the sensory stuff, but the brushing that my friends had found sooo benificial, I was unable to do. My own health issues left me with the inability to do it. Brushing with the wrong pressure could backfire and make things worse.
My OT heard about an addition to the brushing therapy and given Benjamin's oral issues, was facinated. His boss sent him to Denver to a workshop to learn the method from the same woman who came up with the brushing therapy.
He came back to Tulsa, and his first day back we tried it with Benjamin. It was the same principal as brushing, but for tastes, textures and smells ... OT had been told theoretically it could effect all his sensory systems, but it was only really going to be effective on the mouth/nose.
So, we did it.
That night I had one very angry little boy. He hit me, he bit me (he'd never bit anyone before and here he was at 9, biting someone!) The next morning, I did the therapy and he bit my finger ... HARD. A few minutes later, he poured a mountain dew down my back. Frustrated I was going to tell the OT the next day that it didn't help ... in fact it made things worse, my child had changed personalities overnight!!
We got up to go to therapy and my husband went with me to help figure out the new plan. We took Benjamin to a diner for breakfast. We got him the standard breakfast and then became almost angry when he mixed the whole plate and poured gravy over the buiscuts, eggs and sausage mess. Then he did something that still sense shivers up my spine ..he sat there, still ...and ate it and did not throw up. It dawned on me that he'd not thrown up even once since before therapy on monday. This is a child that started throwing up (projectile, not spit up) before he was 10 hours old and had continued to do so without missing a single day .. sometimes several times a day. He'd gone 2 days ... he was eating mixed foods.
The change was remarkable ...and fast ... he, to this day, has not thrown up because of smell or texture. The only time he has has been when he has a migraine or stomach flu.
Time went on, the therapy continued and this child started to emerge from what we'd always known as Benjamin. Eye contact ... self stimming all but extinguished ... interactions with other children ... one by one the autistic characteristics disappated.
We recieved a letter that the developmental pediatrician was moving and wanted a final appt with Benjamin. She'd not seen him in a year and we walked in, he held out her hand, made eye contact and initiated a conversation (he had to, Dr. R was too stunned). She pulled out a CARS form ...and his new score ....
From a 39 to a 14.
I've spent years saying that what we had was a 'proper misdiagnosis' ... he'd fit the profile/diagnostic criteria ...but his real diagnosis was Sensory Integration Disorder (along with TS/OCD/IQ of 80/Auditor & Visual Processing Disorders)
Thankfully, the pediatric neuro had been firm about any diagnosis could be 'fluid' ... just because we say A today, doesn't mean tomorrow with changes ... in Benjamin or in medical science ...and tomorrow could be a P and the next day an H.
Today, his IEP lists popularity and above average social skills as his strength.
Sensory issues crop up now and again and I remind him to do the oral therapy. Usually 2 or 3 days of it and the SID gets back under control for several months.
Our journey into the world of autism lasted from age 2 to age 11. 9 very long, painful, and terribly frightening years.
But I learned sooo much ...about perseverance, about determination, about coping and most of all ..about change.