Ian’s Story

 

Ian was born in our home on November 4th, 2001 at 6:36 in the morning.  He came into the world healthy and pink, with ten fingers and toes to an audience of loving family members, friends and our midwife.  Stan and I were thrilled to add a little boy to our family.  Our daughter, Julia was a sweet and curious big sister. 

Ian seemed to be a normal newborn—he nursed just fine and kept us up around the clock!  As he grew, he hit the normal milestones, like smiling at 6-8 weeks, rolling over at 4-5 months, sitting up at 6 months. 

He babbled and cooed and giggled at us too.  He started to crawl at 9 months and was walking just around his first birthday.  I have many pictures of him looking right at me and the camera.  He was such a beautiful baby—smiley, with big blue eyes and just the right amount of cute baby chubbiness!

Once Ian began to walk, he seemed to take less interest in us.  But this all seemed very normal— there was a big world out there to explore and Ian was a boy!  He liked to get into the kitchen cabinets and open and close doors.  Stan and I did notice that Ian didn’t point or wave like other babies, but we weren’t too worried by it. 

By the time Ian reached 18 months of age, we started to wonder at some of his behaviors.  For one, he didn’t turn when we called his name most of the time.  He was often so engaged in exploring, it was as if he didn’t hear us.  He also had an adorable way of showing his excitement over something— he would flap his hands rapidly up and down, sometimes while jumping. 

By 20 months, Ian was using little to no language, did not point or gesture for things he wanted, and Stan and I were a little concerned.  He didn’t ever ask for food or drink either.  He would just eat and drink what we put out.  He didn’t verbalize any of his needs or come to us to show us toys or take our hands to engage us in his play.  He didn’t seem to care if we were there or not.  When people came over, Ian would flap his hands and sometimes make little humming noises and look at their shoes.  He wouldn’t look in people’s faces.  And Ian didn’t look at us much anymore either.

When a family member saw Ian’s hand flapping at a family gathering, the word “autism” came to our attention for the first time.  He was hand flapping in excitement while he watched his big cousins slide on the giant slip ‘n slide in the backyard.  Ian didn’t join the kids in play.  He just watched and flapped in excitement.  I remember the other thing he really got into that weekend—putting coins in the slot of this big coin bank and watching the coins tumble down into the clear coin container.  He had such good fine motor skill and with the utmost concentration placed coin after coin into the slot, over and over.  And when there were no coins left, we would empty the bank and he would start all over again.

 

 I Googled the word “autism” that night and I cried.  So many of the “symptoms” listed fit Ian to a T:   lining and stacking toys and objects repetitively,  spinning in circles, rocking, hand flapping, delayed language, poor eye contact, the inability to connect or interact with others. There was so much information, but none of it reassuring or cheerful, no cures or positive prognosis.  It seemed so scary and big and unknowing and uncertain.

Within a month, I had Ian evaluated by the Arizona Early Intervention program.  A specialist came to the house to do some behavior tests and I also had to take him in for further evaluation and a hearing test.  His hearing checked out normal, so we knew that if he didn’t turn when we called his name it wasn’t because he couldn’t hear us.  The state did not diagnose autism– we would have to go to a specialist for that– but he was diagnosed with a developmental delay and qualified for the state’s early intervention program. 

For the next year, Ian had an early intervention teacher come to the house to work with him on social skills and communication and we also had an occupational therapist and speech therapist come once a week as well.  The therapists and teacher were sweet and Ian seemed to enjoy them coming, but we didn’t see a lot of improvement in terms of socialization and interaction.

Ian’s vocabulary improved, but he didn’t use language in expressive ways for the most part.  He could recognize all the letters of the alphabet by 2 years of age, whether upper or lower case.  He could also read and even spell many words—like house, horse, butterfly.  But he didn’t use the words to communicate or talk to us.  He said the words to himself or tapped on the words in books, stopping often to flap his hands in excitement.

Right before Ian turned 3, we took him to the local school district for evaluation, as the state early intervention services would be ending by his 3rd birthday and we would need to go to the school for the services.  I took him to the school for tests and evaluation and cried at the results returned to me– “severe developmental delay.”  Ian qualified for developmental preschool. 

We still hadn’t had Ian formally diagnosed with autism.  It was perhaps partly denial, I guess.  But I think it was more the fact that we were pursuing and receiving services for Ian and a label of autism wouldn’t  provide anything further, so we just left it. 

Shortly after Ian turned 3, in November/December of 2004, Stan and I were introduced to Son-Rise by a work colleague of Stan’s.  The colleague and her husband were running a Son-Rise program for their daughter at home.  The daughter had a genetic, chromosomal disorder that caused many physical, developmental and cognitive delays.  While visiting the couple in their home, I remember sitting and chatting in the little girl’s playroom.  I remember being very impressed by their efforts.  But I felt distant too, sort of separated because of course my son doesn’t need all this– a special room, a special therapy, I thought.  I remember the mom handing me the Son-Rise book and video on the way out.  I put the book and video away and forgot about it. 

I think I watched the video a few months later in February.  I kept coming back to autism.  That word—autism!  The video was called “I Want My Little Boy Back,” a BBC documentary about an autistic boy and his family and their experience with the Son-Rise program.  It was a great film.  My heart was pounding when I watched the little boy on screen, screaming over noises and watching the Thomas the Train video over and over.  The parents were having a rough time.  Their whole lives revolved around managing their son’s behaviors and peculiarities and the strain and pain showed.  But, surely I thought, Ian isn’t as bad as that little boy.  He’s not THAT out there.  But Stan and I were struggling with some of the same things. 

The parents in the film took their son to the Autism Treatment Center of America—the home of the Son-Rise Program.  It took the parents over a year to raise funds to take their son for a two week intensive course at the Center in Sheffield, Massachussetts.  They also raised money to build a small separate one-room playroom in the back yard of their home.  Their boy would have his playroom ready and waiting when they returned from the trip.

The progress the boy made during his two weeks at the Son-Rise program was phenomenal.  It was exciting and heart-warming to watch the Son-Rise staff work with him and his parents, with so much warmth, compassion and understanding.

When the whole family returned home, they continued working with their son in his new playroom.  In the video they showed him interacting with the siblings he had previously ignored and walking calmly into stores that in the past had overwhelmed him to the point of tears and screams.

While the video made an impression, I still thought maybe it wasn’t for Ian.  We weren’t even sure he was autistic.  I think we still hoped he would grow out of it.  Or the developmental preschool he was in would do the trick. 

I finally cracked the Son-Rise book in April of 2005.  To read about the Kaufman’s finding a way to help and reach their little boy on their own, was amazing.  It was in the 1970’s and autism was not as well known as it is now.  Raun seemed very severely autistic and still feeling in a bit of denial, I thought, “How can Son-Rise help Ian—he’s not really that bad.” 

Thank God I got over myself and picked up the phone in May of 2005 and called the Autism Treatment Center of America.  They took my information and booked a free consultation call with a Son-Rise family counselor.   After speaking with the counselor about Son-Rise and combing over all the information they sent as well as reading and rereading the website, Stan and I decided I should attend the Son-Rise Start-up Program in August.

What most excited me about Son-Rise was the idea of really accepting Ian and all his little quirks and “behaviors.”  Son-Rise was the first therapy that wasn’t all about correcting bad behaviors.  I didn’t like looking at Ian as a problem that needed to be fixed.  I wanted to find a way to help Ian that didn’t involve trying to program or force him to be different.  I wanted to find a way to inspire him to want to be with us, to talk, to play, to socialize.  Son-Rise seemed to be the best way to do this.  All their principles were based on this. 

My experience at the Son-Rise Start-Up was nothing short of life-changing.  Stan’s mom, Ian’s grandmother attended with me.  Along with 70 or so other parents and a few grandparents, I cried, I laughed and my hope while it had never actually gone away, began to blossom and grow bigger.

That was over 3 years ago.  We’ve been on a Son-Rise journey ever since.  We’ve built a playroom, recruited volunteers and helpers and spent thousands of hours joining Ian in his repetitive “isms” and games.  We’ve learned to accept and give him control and found the joy in allowing him that space.  We’ve had the reward of great smiles and looks, hugs and affection.  We’ve had new words and sentences and playful interaction.  We’ve had huge ups and sometimes big downs too.  But we keep on keeping on and finding our way, learning to love this life with this boy—this special, unique and authentic little boy.