Recently, I posted that Kaylee was having trouble with tantrums and transitioning, and I attributed it to her having autism. She says "no" when she means "yes" and goes back and forth and can't make a decision. She cries and protests when she can't have her way. She fights for her rights when someone takes her toys.
For many months, Kaylee was in her own world, unable to move forward in her social and cognitive development. Although she was growing physically (even that is arguable, before we adjusted her diet she was very thin and underweight, but today she is in the normal range for her weight) Kaylee was not growing socially, emotionally, and cognitively. Most days all she did was "stim" by chewing on her toys, spin in circles, eat her books, or line up her toys. If someone walked in the room, she never noticed. She really tried to avoid people, especially children.
Now I am going to digress a bit and give you some background, if you are interested. I have a friend in my area who has a son was diagnosed with autism and is the same age and close to the same level of development as Kaylee. She is the one who told me about NIDS and her son has been doing the NIDS Protocol a bit longer than Kaylee and he is responding well. But my friend was discouraged because of all of the behavioral problems she was experiencing with her son, all problems similar to mine with Kaylee.
She spoke with Dr. Russell this week about these issues and he told her to read up on typical 2 year old behavior. He explained that even though our kids are clearer, they missed time while they were stuck in their own world, and they still need to go through those developmental stages. He suggested that many of the problems we were experiencing were behavioral in nature and not greatly related to autism. One clue was that the tantrums weren't the typical autistic "meltdowns" that last a loooong time.
We officially lost Kaylee around 13 months of age, but I suspect she has been slowly getting better for a while now, especially when we changed her diet. Now that she is coming out of her own world, it is as if she is starting where she left off. Kaylee is 3 and a half years old, but she seems like she is just above my son developmentally, who is 21 months old. When I looked up "typical 2 year old behavior" on the Internet, it was like I was reading about Kaylee's struggles. Not being able to make decisions, short tantrums when she doesn't get her way, etc.
Kaylee still struggles with auditory processing, like understanding what people are saying, and echoing things she doesn't understand sometimes. But when she was evaluated we were told that she had the processing of a 2 year old. This seems to support the theory because she has the processing of a 2 year old, she is acting like a child who is 2 years old. It makes sense to me now! Looks like we may be going through the dreaded terrible twos a bit late.
This didn't occur to be a possibility to me before, because Kaylee is my first born and I am not really experienced in child development. And there's nothing like living with it, no education can replace real time experience. I had no idea what was to be expected.
All of this time I have been expecting Kaylee to be exactly where her peers were and sinking into a depression when I compared her to other typical children her age.
The truth is, Kaylee is stimming 95% less than she used to and she wants to play with other children, that's groundbreaking in my eyes! I am very encouraged and now I realize I was mistaken in thinking that Kaylee was going to be totally typical after biomedical intervention. I have had unrealistic expectations... This is going to take time for Kaylee to get better and learn how to act and communicate.
Soon I hope to have good updates concerning Kaylee since we will be giving her the Lexapro this week.
Take care and stay warm!
Jennie
For many months, Kaylee was in her own world, unable to move forward in her social and cognitive development. Although she was growing physically (even that is arguable, before we adjusted her diet she was very thin and underweight, but today she is in the normal range for her weight) Kaylee was not growing socially, emotionally, and cognitively. Most days all she did was "stim" by chewing on her toys, spin in circles, eat her books, or line up her toys. If someone walked in the room, she never noticed. She really tried to avoid people, especially children.
Now I am going to digress a bit and give you some background, if you are interested. I have a friend in my area who has a son was diagnosed with autism and is the same age and close to the same level of development as Kaylee. She is the one who told me about NIDS and her son has been doing the NIDS Protocol a bit longer than Kaylee and he is responding well. But my friend was discouraged because of all of the behavioral problems she was experiencing with her son, all problems similar to mine with Kaylee.
She spoke with Dr. Russell this week about these issues and he told her to read up on typical 2 year old behavior. He explained that even though our kids are clearer, they missed time while they were stuck in their own world, and they still need to go through those developmental stages. He suggested that many of the problems we were experiencing were behavioral in nature and not greatly related to autism. One clue was that the tantrums weren't the typical autistic "meltdowns" that last a loooong time.
We officially lost Kaylee around 13 months of age, but I suspect she has been slowly getting better for a while now, especially when we changed her diet. Now that she is coming out of her own world, it is as if she is starting where she left off. Kaylee is 3 and a half years old, but she seems like she is just above my son developmentally, who is 21 months old. When I looked up "typical 2 year old behavior" on the Internet, it was like I was reading about Kaylee's struggles. Not being able to make decisions, short tantrums when she doesn't get her way, etc.
Kaylee still struggles with auditory processing, like understanding what people are saying, and echoing things she doesn't understand sometimes. But when she was evaluated we were told that she had the processing of a 2 year old. This seems to support the theory because she has the processing of a 2 year old, she is acting like a child who is 2 years old. It makes sense to me now! Looks like we may be going through the dreaded terrible twos a bit late.
This didn't occur to be a possibility to me before, because Kaylee is my first born and I am not really experienced in child development. And there's nothing like living with it, no education can replace real time experience. I had no idea what was to be expected.
All of this time I have been expecting Kaylee to be exactly where her peers were and sinking into a depression when I compared her to other typical children her age.
The truth is, Kaylee is stimming 95% less than she used to and she wants to play with other children, that's groundbreaking in my eyes! I am very encouraged and now I realize I was mistaken in thinking that Kaylee was going to be totally typical after biomedical intervention. I have had unrealistic expectations... This is going to take time for Kaylee to get better and learn how to act and communicate.
Soon I hope to have good updates concerning Kaylee since we will be giving her the Lexapro this week.
Take care and stay warm!
Jennie
Stimming 95% less? That's a huge improvement in my books! That's one of the hardest challenges I've faced with Mason. Wanting to play with other children is another biggie too. Your doing a wonderful job Jennie and way to go Kaylee!!! Many praises to God.
ReplyDeleteCarrie