I have a vivid memory of getting into the car after our diagnosis and looking in the review mirror at Connor and looking beside me to my husband, Keith, and him saying, "This isn't going to change my expectations, you know." I recall having a physical reaction to this statement, and the only words I got out were, "It has to." I felt like I had waited so long for a doctor to confirm what I had known. I was frustrated. Would I now have to convince Keith that the doctor was right? I was relieved on some level with the news, and I wondered how Keith didn't see that this diagnosis changed everything? This interaction speaks volumes to the process that couples will go through in the aftermath of the diagnosis of autism. I now can say, two years later, that we both had a valid point in that moment. Keith was unwilling to allow Connor's diagnosis to be a sentence; he was not willing to give up his hopes and dreams for him. I, of course, didn't want to do that either and wasn't really sure that I had to, but I also felt like I had to prepare myself for him needing me long-term. I had to prepare him for the world in a way that I had never anticipated. Diagnosis meant digging my heels in and beginning the work, the work that would allow him his best future. However, I now know that diagnosis did not mean the boy in the backseat was not the same loving boy he was only hours before, nor did it mean that we should ever give up hope.
When we left the office that day our doctor's recommendations included: increased early intervention services to address the core deficits of his autism spectrum disorder, including placement in a behaviorally-based teaching program by age 3; intervention goals for communication, social skills, adaptive skills, and reduction of maladaptive behavior; opportunities to interact with typically developing peers; a comprehensive speech/language evaluation; a comprehensive occupational therapy evaluation to address sensory and motor/adaptive skills; a laboratory evaluation; and visit the Autism Speaks website to download the 100 days kit for families of children who have been newly diagnosed with an autism spectrum disorder. That was the extent of 'what to do', except us coming back in six months for a follow-up visit. Most of those recommendations were more appointments or me relying on others to work with Connor, but there was nothing in all of it that I felt I could do except order that kit. So, as soon as I got home, I did just that.
I would recommend that all parents visit www.autismspeaks.org and order the kit ; however, I also recommend you take a deep breath before diving into it. When I first began reading the binder filled with information about therapies, and the number of hours recommended per therapy, I quickly realized Connor had just signed himself up for a full-time job at the age of two. I wondered how any parent with a full-time job could possibly navigate through the appointments that were being recommended. I felt discouraged and overwhelmed. Not only did Connor need me, but also running around the house was our older son, Cameron, still demanding my attention; my husband still had the responsibility and stress of taking care of his own patients for his career. I knew this was going to be primarily up to me. I had to be the one to do the reading, researching, and planning.
Keith was there to support me from day one, but our coping was different. Beyond the empowerment and strength I gained from the more I learned, I felt less alone when I heard others' stories. I wanted to share it all with Keith, and he tried his best to be available for me to share it. But, I do remember one evening, not long after diagnosis, when he was dictating his notes on the couch, and I was very excited to have him listen to me read a segment in a particular chapter I had been reading, and he asked me to stop. I was annoyed, but he went on to explain that it made him incredibly sad to hear about other children, and that it didn't help him at all to hear it. He said how much he loved Connor, how he would do anything to help him and me, but listening to the heartache of others did not make him feel any better. I knew in that moment that night that I needed to respect what he was telling me. I could not expect him to cope the same way I did, and for us to truly be a team through this we would have to mutually respect how the other dealt with it. He was not asking me not to read any and everything. He was not limiting anything I wanted to try or explore, but he was asking for some boundaries in what he felt was too painful for him in that moment. I think the choice not to fight who was "right" was a defining moment for how we were able to move forward through this together.
When I think back to Keith's original response in the car about not changing his expectations, I think we would both agree that they have changed in some ways. With diagnosis comes change; like any other family crisis or tragedy there tends to be a "before" and an "after" period, and I think this applies to diagnosis day. Prior to the doctor's putting it in writing, you can hold on to the words others will share because they think it is what you need to hear. You can cling to the moments when they seem "least autistic" and convince yourself otherwise. However, after diagnosis this stops. You know logically that your child has autism, whether you have accepted it or not. Sadly, there are many families who get stuck in their grief; they live in lost expectations and dreams. What has worked for us is not losing expectations, but readjusting them regularly. We choose not to get stuck in looking backward about what caused his autism? Why us, why Connor? We choose not to look too far forward. Will he get a job, go to college, fall in love, get married? We choose to live now, to set short-term goals, expectations, etc. Connor has changed how we view the world for the better. We have slowed down in many ways, appreciating today, because we focus on one day and one accomplishment at a time. He has made tremendous strides, accomplished more than I thought possible when he received his diagnosis. I know he will continue to surprise and teach us. I know not all children will make the progress that he has, and I know that many have a road that is harder than we have with children who have the same diagnosis. I know I cannot ignore the worries of the future, but I also know that being consumed by worry does not help Connor today or any day for that matter. What helps Connor is being his best advocate, not relying solely on others to do the work, but me being part of the work, being his mother and ally through his journey.
Below are some of the sites that I found most helpful in getting started. I hope that these can be resources throughout the journey that ultimately lasts a lifetime after diagnosis day.
Kathy Tyson has an M.Ed. and is currently working on her Autism Certificate and BCBA coursework at Penn State. She is vice president of Autism York. More important than those credentials is her on the job experience as a mom to her two sons. Read more here about Kathy's journey with her younger son Connor, who was diagnosed with autism.
General Information:
www.autismspeaks.org
www.autismresources.com
www.autismlink.org
www.firstsigns.org
www.thegraycenter.org
http://www.autismtoday.com
Current Research:
http://www.autism-insar.org
Adults with Autism:
www.autisticadvocacy.org
Asperger Syndorme:
www.aspergersyndrome.org
www.tonyattwood.com
Support in Pennsylvania:
www.autismyork.org
www.tacanow.org
www.autism-society.org
great article :)
Beautiful article, well-written, personal and with life lessons that transcend confronting autism.
Where's the byline? ;)