Tuesday, May 31, 2011

Our Journey into Autism (Finding a Way to a Diagnosis)

One thing those close to me, and perhaps those who follow my tweets regularly, may know is that I am the proud parent of an autistic child. Having a child with autism is not ever in anyone's life plan as far as I know but somehow for our family has turned out to be a unique experience in which we are grateful for. My son was diagnosed with high functioning autism early this year and as overwhelming as that day was for our family it has also shed a lot of light on the little boy we love the most. My son sees the world in a way that sometimes leaves me awestricken. He will notice the sounds, colors and textures of life much more suddenly and vividly than most people around him. He has taught us an understanding and compassion about the world we live in that I doubt we would have discovered without him. Of course we face struggles daily but no challenge seems too great when we compare it to the love we have for him.

When speaking with other families with children with autism, aspergers or those who are suspicious of their own child falling under the spectrum I am often asked - "How did you begin to get him diagnosed?" "What symptoms did you notice that prompted you to inquire about autism?" Raising a busy, young child is a challenging time. I think every Mom at one moment or another has wondered to herself if perhaps her child is a little too rambunctious, or perhaps a little too sensitive to one thing or another. Like a lot of Mothers out there I never really thought anything was different about my son compared to other spirited young men. Sure he was pretty sensitive, shy and a little slow to develop...but he's a kid. Some kids are sensitive. Some kids are shy. Some kids learn and develop at a slightly slower rate than others. At the end of the day as a parent you have to trust your gut. Instincts along with feedback from teachers and/or child care providers can provide a valuable source into out-ruling or eventually diagnosing your child with special needs.

Take a deep breath. Troubles started for our family shortly after my sons first day at school. Prior to the new school year I had expressed concerns with a local child development center about my sons delayed speech progress. My son learned everything at a bit of a slower rate than his peers. Potty training came at 4 along with the beginnings of formed sentences. Weeks prior to beginning junior kindergarden my young man had trouble stringing some of his words together, most of his speech was unrecognizable to anyone outside of the immediate family. I became my sons translator. A speech therapist assessed the situation and while my little guy was delayed no great concern was expressed that perhaps this could be related to some other underlying issue. I also had my concerns about my sons tendency towards emotional meltdowns and an inability to focus. The possibility of attention deficit disorder was brought to my attention but at the age of 4 a diagnosis of that nature was difficult to make. With hopes held high I dropped my son off at school on his very first day. The phone calls started that very afternoon. My 4 year old was unmanageable, destructive, sensitive, unyielding, overemotional and an endangerment to other children in the classroom. My heart was broken. I couldn't imagine my child having meltdowns of the proportions being described to me. Judgement rained down from every angle. Perhaps it is attributed to poor diet. Perhaps there is no consistent routine at home. Perhaps the child is witnessing a great deal of hostile behavior at home. Perhaps, perhaps, perhaps. I pulled my son from junior kindergarden classes. The lightness came back to my little boys eyes. A mystery had begun to unravel. Something within me took over. No parent wants to watch their child suffer or struggle. Every parent dreams of the day when their child can bound happily off to school to make new friends and learn new things. To thrive. To grow. Why was this all so difficult for MY child??

Never stop pushing. Phone calls placed to our local developmental center resulted in our son having a sensory integration test scheduled. The test was helpful in highlighting my child's overactive sensitivity to sensory related stimuli and discovering a handful of coping techniques but the WHY was still missing from the equation. After a 6 month wait we finally arrived at an appointment for a referal to a local pediatrician. The doctors opinion - anxiety. ANXIETY? That was too vague an answer that I was not ready to easily accept. Our family was then referred to a child psychiatrist who would help us pinpoint the reason for a now 5 year old to have such staggering anxiety. Some time during the 6 month wait for that appointment to appear on our calendar I stumbled across something that changed our lives forever. A good friend of mine was studying children with special needs and happened to come across some information on aspergers. Google became a close friend. Reading the symptoms of a child with aspergers was like reading a book written specifically about my son. It all made sense, it was like someone turned on a light in a dark room. Unfortunately the psychiatrist we waited half a year to meet with was not properly certified to administer testing to diagnose such a thing. However, after almost 3 months of appointments she did diagnose my child with adhd. I was not ready to leave it at that. After some nudging we were told the name of a local doctor who administered a testing for autism called "ADOS " which stands for Autism Diagnostic Observation Schedule. Another trip back to our family doctor, more nudging and we finally had our referral. The day we walked into the testing room it had been over 2 YEARS since the first appointment was made to discover the diagnosis. A few weeks later as we sat across the table from the doctor we had our answer. Our son had tested positive (very clearly) for autism. Now there is something to be said for thinking it, believing it and then HEARING it. So many had disagreed with my belief that my son indeed had aspergers. Doctors, developmental workers and teachers had all taken no issue with telling me point blank they doubted that was the issue we were dealing with. I trusted my instincts before listening to anyone else yet HEARING it that day was one of the most difficult moments I've had as a parent so far. The good news - it is a high functioning form of autism, otherwise known as aspergers. With a great support system in place a child with aspergers can grow to thrive and manage well in society alongside his peers. We were prepared to do whatever it takes to help him get there.

Round up the troops. Having a diagnosis will change the way in which others will support and understand your child. Being the parent of a child with special needs has it's challenges. Not every person your child comes into contact with will be understanding - this is the downside. YOU can change your child's life. Be the number one advocate for your child's well being. The best way you can do this?? Stay INFORMED. Even in a small town like ours there are autism and autism spectrum disorder support groups. Seek out support groups near you. Make a point to stay in close contact with your child's school and/or child care provider. Since the diagnosis I am proud to say my son now attends full days in the senior kindergarden classroom at his school. Planning monthly or semi-annual meetings with your child's school to stay on top of progress and conflict resolution is a GREAT idea. We have our sons teacher send home a daily journal featuring notes on things he needs to work on as well as daily successes. Be sure to make sure the people who are close to your family (friends, relatives and coaches) are aware of your child's diagnosis and compassionate to his/her needs. Read - a lot. Over the next few weeks I will be sharing a list of recommended reading for families with children diagnosed with autism and aspergers as well as providing links for supportive online communities and websites we discover along our journey.

If you suspect your child may have autism or aspergers speak with your family doctor. The Aspergers Society of Ontario website as well as Autism Speaks Canada were very helpful to me in the early days pre and post-diagnosis.

If you have a story to share about your own families journey or struggle with autism or perhaps some helpful links to share please leave a comment to share with our readers.

1 comment:

Anonymous said...

Lyndsay I met you on facebook and we started to talk and you gave me this blog site to read. Thank you for sharing your story. Its nice to hear that someone is the same boat. I haven't had problems with Doctors but the school district seems to let me down. After talking with the doctor, things aren't as bad as i thought. Mild Austism...but its the rest of my family not realizing my son for who he is that bothers me. This makes talking to you a special friendship..thank you for understanding! kathy