My blog for the last year and a half has focused mainly on Gavin. Today though, I’m going to tell the story of my beautiful quirky princess, Kendall.
Four years ago I thought, without question, that Kendall was demonstrating red flags on the Autism spectrum. I remember clearly, the frustrating weeks that were ahead, mostly because no one believed me. I felt like I was fighting the battle alone. According to several Autism websites, she met the following red flags:
- Delayed or no speech
- Walked on her tiptoes
- Waved her arms in the air; flapped her hands
- Limited Food Options
- Did not point or respond to pointing
- Played with toys the same way every time (repetitive play)
Her pediatrician reassured me time and time again that she was fine. She told me she saw where I was coming from, but Kendall was way too social, even with a limited vocabulary, to be considered for the Autism spectrum. Slowly she started to gain speech through her Early Intervention program and I had to let go of the idea that she could have Autism. I knew people thought that I was crazy and I started to believe that I was as well.
Fast forward to 2013, after we received Gavin’s diagnosis. I threw myself into every book, article, video, etc., that I could find on the topic. However the more I read, the more I started remembering everything that I thought about Kendall when she was 2 years old. Oddly enough, many of the new things that I was reading highlighted new red flags for four year old Kendall. Every time I came across these similarities I would share them with Doug and we both agreed that this wasn’t our own paranoia or our lack of sleep with Gavin’s diagnosis. This was something larger and we needed to talk to her pediatrician about it again. We both agreed we would never forgive ourselves if we ignored her needs because we had been so focused on Gavin.
We signed Kendall up for the same three part evaluation that Gavin went through, but this time we didn’t tell anyone. We already knew what the majority of people would say, which was that we were crazy to think that Kendall could be on the spectrum. I know this is true, because it was all I heard when I had these same doubts two and half years prior. It’s all I still hear about Gavin from several individuals. People continuously tell me he doesn’t look like he could have Autism. I still haven’t figured out what exactly a person with Autism should look like, but I didn’t need more judgement.
I’m sure many of you are reading this now and are wondering how in the world could we think she has Autism. And after a visit to our developmental pediatrician we learned that she did not meet all of the criteria for an official diagnosis. However, what we did learn shocked both of us.
Kendall’s developmental pediatrician told us that she did not qualify for an Autism diagnosis for one reason and one reason only, her empathy. Most kids on the spectrum do not have the ability to connect with individuals through empathy. Kendall however is off the charts when it comes to compassion. Despite this great news, we were quickly brought back to reality with a hard to hear statement. Her pediatrician told us very clearly that Kendall scored poorly in several other areas and if she didn’t have such a high empathy score she would have been diagnosed with Asperger’s Syndrome.
She applauded us on being proactive parents by bringing her in and acknowledged that many of our concerns were accurate. She continued to talk and I drifted away to a place even further away than I did when we received Gavin’s diagnosis. I was prepared for Gavin’s news. I knew that his was coming, but I had been told for three years that I was just crazy about Kendall. I wanted to believe so badly that everyone else was right. However, to hear that she was border line for Asperger’s shocked me, even though I was the one that insisted on the testing. Since Kendall did not meet all of the criteria for an Asperger’s diagnosis her pediatrician instead gave her a diagnosis as a “Quirky Kid”.
Plans of sending Kendall to our local Catholic school were suddenly changing as her doctor continued to list off the services she wanted Kendall to be evaluated for with the public school district. The letters IEP were now becoming a much more common phrase in our home then I was prepared to handle. However, we knew we had to do what was best for her; it was the reason we were there in the first place.
So we moved one block away to a significantly smaller apartment in Brookline, MA, this past August. We did all of this just to receive better services for both of our kids in an amazing school district, and yes, it is literally one block away!
Today we had our second IEP meeting within a week, this time for Kendall. Once again we were reading through multiple page of reports filled with clinical language. Every clinician noted how sweet and engaging Kendall was during the testing which was wonderful to see. What was not so wonderful though was reading all of the concerns they saw for Kendall.
I haven’t blogged about Gavin’s IEP because it was hard to process. I felt really beat up after the meeting and I didn’t know how to put everything into words. Hearing over and over again about all of your child’s weaknesses and how far behind they are from their typical peers is not easy to go through. To experience it again a week later for our other child was not any easier, if anything it was somehow more difficult. I know that we are doing everything we can for both of them to be successful, but it is so hard to sit through meetings that focus on so much negative.
Despite all of this though, we are lucky. Both of the kids will be receiving services. They will both be receiving the tools they need to be successful. The road to getting them there has not been an easy one and the actual logistics of getting both of them to their schools is adding another curve-ball to our day to day routine but, Doug and I keep pushing through. However, if we are being honest there are days that can be both emotionally and physically draining.
We absolutely love our two quirky kids for all that they are and all that we know they can become with our love and support. However, if I had one wish for them it would be that neither one of them ever had to struggle. I wish that life could just be easy for them, and I worry that this will always be their normal.
There are hurdles, there are handicaps, hardships you have to face in life, but you hope for a great future. -Anil Kapoor