Tuesday, March 1, 2011

The Journey and the Emotions

I have heard a common phrase that is used by parents after they learn that their child is on the spectrum. That they "mourn the loss of their child". I am not saying that this isn't the case with these parents, but it was quite different for me.

Kyle has always been the same, we never lost anything. He has Asperger's Syndrome and never lost any of his abilities, speech was never an issue. I still have huge hopes and dreams for him. I know that he can be whatever he wants to be. For him, there will just be a few more hurdles along the way.

I admit, every time I read the letter from the doctor which states his diagnosis, I can't help but cry. The tears come from a place inside that confirms something I had known since before he was three. I no longer feel that I was a bad parent. I praise myself for never giving up. There were many times giving up seemed easier. The fighter in me always won.

I knew there was something 'unique' about Kyle long before he turned three. The endless spinning in circles, running...the constant battles. ADHD crossed my mind. At his three year checkup I told his pediatrician about my concerns. He blew me off and said they wait until school to deal with that. I wanted whatever it was to be under control by school.

When he was three and a half I married my husband. My mom was at my wedding and was in charge of watching Kyle. She feels that she missed my wedding. Kyle kept taking off, running outside of the reception hall, constantly. After having two more little ones, it is clear how severe this was. (I was thinking of this day recently because I was scanning some wedding pictures on the computer)

By the time Kyle was four, things weren't getting better. The terrible twos never left. At his annual checkup I refused to leave without being referred. We were referred to one psychologist who met with all of us and performed many tests on Kyle. He was then diagnosed with moderate to severe ADHD-HI and ODD. Finally, we knew what was going on and could go from there.

Behavioral therapy, family counseling and a trial of every ADHD medication offered little relief. Along the way we switched therapists. The place we go to now is great. Shortly after working with them with the ADHD and behavioral therapy, they asked me if anyone ever mentioned Asperger's to me. I had never heard of that term before. They went on to explain what it was, and it was if they were describing my child. They wanted him to be evaluated in depth to make sure that it wasn't just severe ADHD. He received the provisional diagnosis of Asperger's in first grade. A year and a half later he received the definitive diagnosis. When I discussed this with his first grade teacher (first grade was a very rough year for him) she said she had wondered if he was.

Now, we are finishing the last leg of third grade. We still have our hurdles, battles and sensory issues. Changes in routine, transitions, impulsivity, safety and social issues are the main things we have issues with. But, along with that, we have the support of the IEP, our knowledge and acceptance of his condition, and his classmates that are more accepting of him now that they know. He also has two therapists, the best I have ever met, that work with him one on one and in small social groups. He also participates in numerous extracurricular activities that help with his social growth and also keep him active. Boy does he have a lot of energy!

How do I keep sane? I'm one tough cookie! I am just thankful that I pushed along. Never doubt your gut instinct. I also have a five year old son and a four year old daughter that are neurotypical. They act "appropriately" like neurotypical kids are "supposed" to act. That, to me, confirms that I am not a bad parent. The higher power, known to most as God, gave Kyle to me because he knew that I would do the best for him. He knows that Kyle is in the best place. My kids are my world. I love each of them for who they are.


  1. thank u for shareing this :) we have 6 kids 3 have special needs one son aspergers, one daughter high func autism and our youngest daughter has autism. its a different life but life it is.

  2. I too feel we havent "lost" our child, he is still the same gorgeous cheeky (challenging) boy he was before the dx as after but I too had a little cry when read through the official letter of dx from the paed. Nothing we didnt know already but something about seeing it all there in black and white. love your blog thankyou x

  3. Thank you! It is nice to hear from other great moms (and dads) out there! Sometimes I worry that people will disagree with what I write, but it is how I feel. I also respect people that have different opinions than mine because everyone's situation is unique. I am glad that you enjoyed this. :)