Monday 5 March 2012

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!

14 comments:

  1. My heart breaks for the both of you - what a rough journey you have been on! (Sending you a big virtual hug...) You have always been the mom that Elliot needs - loving him for all that he is. I know your story will help so many moms who feel the same way - we can be our own worst enemies, can't we?

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  2. I feel like I could have written this about my daughter. We could never figure out what was going on with her and then at ten years of age we finally found someone who would listen and she was diagnosed with aspergers. The diagnosis was everything! It wasn't labeling her, it was helping her finally become more at peace with herself. Once we knew what was 'wrong', everything became right and she is now flourishing at 14. Best of luck to you and your family!

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    1. People are so afraid of labels, but a diagnosis is critical for people to better understand themselves and to get the help they need to be successful in this world. Thanks for your comment, and I am glad your daughter is doing so well. This brings me hope!

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  3. Thank you for sharing your story about Elliot. I'm sorry you had to go through so much as a mom! We are not super women, and having a child with special needs and issues sometimes takes a village. I often wonder if having a child with Down syndrome (my son is 8 with DS) is easier because people can see it right away.

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    1. No, we are definitely not Super Women, but there are times I really wish I could be. Thanks for your kind words. :)

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  4. Thank goodness you finally know what it is and have some idea as to how to manage it. What a roller coaster it must have been for your family.

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    1. His diagnosis has made all the difference in the world, and I am happy we never gave up in spite of how difficult it became. :)

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  5. You WERE exactly the parents your boy needed. You were proactive in recognizing and addressing your child's needs. You kept on until you found solutions and continue to do so...We do the best with what we have. Informing yourself and making decisions on what you know and learn is the BEST thing anyone can do for a child! I feel for you that it had to be such a struggle, but Elliot is blessed to have you (and Mr. Level-Headed) in his corner! Thank you for sharing your story. Let this be a lesson to all parents who are struggling. They are NOT alone, there are answers out there, even if it takes work.

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    1. Awwww . . . You are very sweet. Thank you! :)

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  6. Thank you so much for sharing this story, I think you will see that a lot of us in The Mom's Who Write and Blog group have had similar experiences, I began my blog with the specific purpose of sharing our experiences with Sensory Processing disorder and also detailed how I became a pediatrician hopper, because I knew there was something wrong from the beginning, and no one would listen. Finding the right Dr is so crucial, and making sure that person is truly listening to you. Your persistance paid off, and you are right he is who is supposed to be, and so are you! Thank you so much for sharing this story, and I will share it too!

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    1. I'm amazed at how many woman in our circle have similar stories and experiences. It is wonderful to not feel so alone in this, and I am loving getting to know everyone else through reading their blogs. It's a fantastic community. :)

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  7. Wow what a story. So glad I popped over here from Google+. My son is 3 1/2 and has no diagnosis, either except for a severe speech and language delay and overall DD. And maybe autism. And maybe not. I'm wondering if we should take him to a neuro-psych mostly to see if additional therapy would be helpful to him. It's so hard to know. Thanks so much for sharing!

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    1. It is hard to know what to do, but I am firm believer that knowledge is power, and the more understanding we have, the better equipped we are to be the parents our kids need us to be. Good luck, Kristi! I know it is a long, hard road, but everything will work out.

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  8. Krista,
    Elliot is one lucky little dude to have you and Derrick for a mom and dad.

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