Our Path to a Diagnosis

Elliot's diagnosis did not happen overnight; it was a lengthy process, which involved many experts, and it was never easy.  However, in spite of my difficulty coping with the magnitude of his diagnosis at the moment, I do not regret embarking upon this path.  For me, knowledge is power!  We did not seek out professional opinions so that we could simply slap a label on Elliot's forehead, box him up in a nice, neat diagnosis, and wipe our hands of him; but rather, we sought out the experts so that we could better understand our son and his idiosyncrasies, so that we could finally find the tools needed to help him cope with the world around him, and, most importantly, so that he could understand for himself why he finds everyday tasks challenging while others seem to breeze right through them.  We love Elliot, and we want him to love himself!

When Elliot was an infant, it quickly became clear that he found our world challenging.  Derrick and I used to say that he this world clearly did not match up with his expectations.  He could not tolerate changes in his routine.  He HATED the dark, and would scream the entire time we were driving at night until I clued in and started leaving the car light on.  He needed to be on me at all times, and loved nothing more than being strapped to me in a sling.  He NEVER slept.  And the only way I could soothe him was by reading to him.  In fact, he was only six months old the first time he heard Charlotte Bronte's "Jane Eyre".  I was taking a course at the time and needed to read this book, but he wouldn't sleep.  In exasperation, I started to read aloud to him, and he settled right down. 

As a toddler, he was always getting hurt, whether it be from leaping off of tree houses, sliding down the stairs on a mirror, or running into the corners of walls.  He HATED surprises, parties, and loud noises.  Christmas was a nightmare for him, and he would spend the day up in our bed, watching movies all by himself and wanting nothing to do with the presents, the people, or the food.  I cried about this the first time it happened until Mr. Level-Headed, wrapped his arms around me and said: "It's his Christmas too, Krista, and we need to let him celebrate it how he wants to".  That was a pivotal moment for us because we finally recognised that there were things Elliot could not handle, and we stopped pushing him to do so.

Hindsight is a wonderful thing; looking back through the framework of his diagnosis, these are all classic signs of a child with NLD.  Unfortunately though, I simply saw them as signs of my failure to properly mother this little boy.  I HATE routines. I am spontaneous.  I am loud, and I love the chaos of crowds.  And as a mother, I assumed my children would simply learn things as I did through experience, through observation, and through exposure.  But this is not how Elliot learns; he needs explicit teaching in ALL areas of life, he needs routines, and he needs a lot of down time. 

Elliot's first experience with a psychologist was when he was in preschool.  He had a keen preschool teacher who quickly realised that Elliot' challenges were out of the ordinary.  When we met with the psychologist, I decided to only have her examine him for a possible reading disability because Derrick is dyslexic and we thought that this would explain the challenges he was having in preschool.  I remember Derrick suggesting that we have her examine him for his behaviour as well, but I couldn't.  I truly believed he was okay, and that the problem was with me.  You see, when Elliot was two, he went to a babysitter three times a week while I finished my degree, and he thrived there.  Pam was everything he needed.  She was patient, she was orderly, and she was quiet.  And this further fed into my notion that somehow I was failing Elliot even though I really tried my best to give him the things he needed.  In the end, the psychologist noted that he was too young to diagnose with a reading disability, but that there were definite discrepancies between his abilities and his IQ, which is suggestive of a possible learning disability.

Fast forward three years later to a time when our life was in complete and utter disarray.  I was working full-time as a teacher at my kids' school, and our schedule was hectic. Elliot was a mess.  He was throwing tantrums every morning and every night.  He was stressed beyond belief, and we knew that something had to be done.  In the end, we decided it would be best if I quit work, and we took Elliot back to the psychologist, but this time, we were going to have a full examination.  After numerous meetings with her and after going through the full gamete of examinations including having her study our parent-child relationship, we were told that Elliot either had an anxiety disorder or Asperger's. Our next step was to go to a paediatrician and be referred to Dr. Anne Murphy, our region's Developmental Paediatrician and expert in neurocognitive disorders.  

This is where things get interesting!

I was pumped.  We finally had answers to Elliot's behaviour, and we were finally going to get the help we needed.  I quickly booked an appointment with a paediatrician who and I know and respect, and for the first time in a long time, I felt like we were on the right path.  Unfortunately, like most times when we start down the right path, obstacles are thrown in our way.  The paediatrician had been busy, and she did not read Elliot's file.  So, when we entered her office and I explained why we were there, she was shocked!  She was adamant that there was nothing wrong with Elliot and suggested that the problem was me.  That I babied him and that I was going to "ruin him" if I continued seeking out a "label" for him.  I remember looking at Elliot, who was shaking on her examining table because he didn't understand why he was there, and thinking: "I'm sorry. I'm so sorry you had to be given to me".  I cried the whole way home.

A year later, Dr. Murpy's office called to set up an appointment and sent forms for us to complete outlining our concerns about Elliot.  I ripped them up and I avoided their calls.  I couldn't have another professional tell me that I was the problem.  I felt terrible for what I had done to my son, and I promised myself he would never, ever be made to feel like he was damaged or different on account of his mother's shortcomings.  With me at home and me trying desperately to create a home of routine and peace, Elliot had started to flourish.  His tantrums reduced drastically and he was happy again.  But then, things started to get rough at school, which had never happened before.  Elliot started to get nervous again.  He was coming home with stomach aches on a weekly basis, he was unable to sleep, and the tantrums began again.  We chalked this up to a chaotic school year, where he had four different teachers and decided to homeschool him.  Again, I was determined to fix what I had made wrong. 

Then two months ago, Dr. Murphy's office called again, but this time they called Derrick's cell.  We had decided that Elliot was quirky, but we loved him for his quirkiness and would do whatever he needed to feel safe, secure and loved, and for me, that meant no more doctors.  But Mr. Level-headed disagreed, and after talking with the receptionist, he decided we needed to give it one more try.  Being the awesome, amazing and always supportive husband that he is, he did not schedule an appointment at that time but told her he would get back to her after he spoke with me.  Upon hearing how important this was to Mr. Level-headed, I gave in, I filled out the new questionnaires they had sent (sobbing the entire time), and we saw Dr. Murphy on February 16.  I didn't sleep the night before. I was nauseous and scared.  I think somewhere in my heart, I was scared that not only would she tell me this was my fault but that maybe she would take him from me.  I know it sounds absurd, but for almost eleven years I have been beating myself up for not being the mother Elliot needs, and I really thought I was bad for him. 

Thankfully, that's not what happened.  Dr. Murphy was kind and understanding. She immediately diagnosed Elliot with a nonverbal learning disorder, a syndrome similar to Asperger's but with different strengths and weaknesses in visual-spatial-organisational skills, motor performance, and social learning areas. Needless to say, I was shocked!  I still am. But, it doesn't change things.  Elliot is still Elliot.  He is quirky and we love him dearly.  But, now we have a support a system.  We have understanding.  We have tools.   And for once in my life, I feel like God didn't make a mistake.  I feel like I am exactly the mom who Elliot needs!