I think the last couple posts have somehow created a snowball effect of misunderstood ideas about where I stand. So, I am posting the following Points of Clarity....
1. I fully accept my son's diagnosis of ASD. I do not want him to be anyone else but the wonderful person that he is. When I mentioned in this post that I wish he was NT it was not based on who Gabe is as a person, but the day to day struggles he has with language and eating. Those are the two HUGE obstacles that ASD has created and I would not wish those on anyone. Gabe is a blessing to our family.
2. My son has many wonderful qualities that may have or may not have been created by ASD. Remembering what my brother was like when he was younger, and has ASD, I believe Gabe has many of the same interests and characteristics that he had. I am ecstatic that Gabe is so creative mechanically, that he loves reading, writing and understanding how written language works. (Much quicker than most kids I know) That's a BIG WOW! Gabe loves to learn and gets excited about a good mental challenge. Just a few of the things that I believe may have been accentuated by ASD. I am by no means trying to stereotype him into being an "ASD Genius" , but I have yet to met someone with ASD that didn't have a different way of seeing the world. I think it can be a gift depending on how you look at it.
3. People with ASD can give incredible insight to parents with newly diagnosed children and about how they view the world. Some of the fifty+ blogs that I read are written by people that have ASD and strike me as very intelligent, witty and worldly. As a parent with a 2 year old child with ASD, you see the road ahead as being so uncertain and these blogs shed light on what life is really like later on for someone with ASD. What can be discouraging for parents is the occasional finger pointing at us and anger towards the NT world as a whole. It reminds me of the rage I feel sometimes towards the medical profession for not understanding or caring about my son's needs. Each time I go see a new doctor though, I have to remind myself that this doctor could be different. I have been pleasantly surprised on a few occasions. Most of us have used our Blogs, at one time or another, as a way to vent our rawest emotions. Sometimes our deepest truths can cause the biggest waves.
4. Most parents have an incredibly strong primal need to protect there children. They will go to any lengths to ensure the safety of their children. Boo never slept or stayed in the nursery the entire two days that I was in the hospital after giving birth. When Gabe was born, I walked through the maternity ward,down 3 corridors, all the way to the back of the NICU. This occured the evening after having an emergency C-Section. I did this even though I was prescribed bed rest due to heart complications. Nothing was going to keep me from my son. I have never been so focused. This is what separates the Parental thinking about ASD from the a person who has ASD. The parental side will always wonder if they are doing or did enough to help their child (ASD or not). We want to nurture and provide for our children. Without any help from the medical community, insurance companies, school system and society, that can be a very daunting and lonely task. Both sides have very valid, but sometimes very different ideas about what having ASD really encompasses. I am a parent of a child with ASD, therefore, I write from that perspective.
5. Finally, I do not know if I will ever find my "happy place" with ASD. It has caused havoc to Gabe's ability to process language, communicate and eat food outside of babyfood. Plain and simple. I am learning great strategies that ease the frustration that Gabe has with communicating with us. I do not care if Gabe will ever be able to go to a buffet and put a bit of everything on his plate. I do, however, want him to be able to be healthy and get the proper nutrition, even if he chooses only five foods that are acceptable outside of babyfood.
That's truly where I am at.
