Many kids, who are lucky enough to go through ABA and have incredible results and reach Remission or Recovery - get to stay there.
Some kids do not.
Because autism is an individualized disease. It is not neatly wrapped up in a series of words, expectations, explanations, or categories.
Because people are not that easy to compartmentalize.
I am going to admit that my worst fear has snuck its way back into reality.
Autism is sneaky.
My gut knew we needed to see Dr. MAL to confirm what I was suspecting but my brain wanted to convince my gut that I was paranoid. That I was so focused on her development that I could find a way to make her seem worse (for lack of better word) than she really was.
And my gut was right.
So my brain is reeling.
You see, the brain is constantly growing. Constantly changing. Constantly adapting to life. It should not simply stop when we reach certain milestones. It needs to keep working. Sometimes the brain can adapt and grow all on its own and sometimes it cannot.
Maddy is struggling to adapt to the changes that naturally occur in the brain at the age of 6-7....and there is a reason why most studies say that ABA is MOST effective before the age of 7....so MUCH needs to be accomplished.
Now it isn't full blown scary regression or anything like that. I know we are not that far in it. But there are obvious signs that she is having sensory issues, social issues and communication issues. And she has become very Aspergers-ish when it comes to obsessions. (Mario)
Dr. MAL wants to rule out Absence Seizures as well so we are in contact with Maddy's Pediatrician (Dr. S) as well. (Absence seizures are short periods of "blanking out" or staring into space and like other kinds of seizures, they are caused by abnormal activity in a person's brain.)
We will go back to Speech and OT to get evaluations as well. Clearly there are things going on and we want to know the best ways to address everything before we can make a clear action plan.
But the reality is: there needs to be an action plan.
To be honest. it hurts. You never want to see your child suffer and many people don't understand what kind of "suffering" a child with autism has. Simply put: if you were unable to communicate with ANYONE on how you were feeling, your thoughts on life, your general NEEDS, or just have a very simple connection with another human being - would you not think of that as suffrage?
To be surrounded by a world who you didn't understand and couldn't understand you.
To want to have peers who connected with you. But can't make those relationships because your brain just doesn't' communicate like everyone else's?
Everyone has had a time (or several times) in their life where they felt left out, alone, misunderstood. Everyone has had a moment where they were made fun of or not included. Everyone has gone home to their mother at least ONCE in their life, with tears in their eyes saying "Why don't they like me?"
Imagine a life of perpetual "what is wrong with me"?
As a mother, I want to protect my child and I want my child to soar. To teach them all I know and help them accomplish what they love and dream about.
I will never stop fighting for Maddy.
The thought is daunting. The reality is terrifying.
She is worth every bit of it.
To say I'm tired already would be an understatement.
But I have to remain ever thankful for the time and the development she has had. That she can communicate with me - even if I can't quite understand everything - even if it comes after an angry outburst. That I had 4 years of relatively good times.
So now we go back into the trenches. So much is unknown. One thing I do know, God is with us. He has the plan. and HE will prevail.
As our verse has always said: "I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7
Some kids do not.
Because autism is an individualized disease. It is not neatly wrapped up in a series of words, expectations, explanations, or categories.
Because people are not that easy to compartmentalize.
I am going to admit that my worst fear has snuck its way back into reality.
Autism is sneaky.
My gut knew we needed to see Dr. MAL to confirm what I was suspecting but my brain wanted to convince my gut that I was paranoid. That I was so focused on her development that I could find a way to make her seem worse (for lack of better word) than she really was.
And my gut was right.
So my brain is reeling.
You see, the brain is constantly growing. Constantly changing. Constantly adapting to life. It should not simply stop when we reach certain milestones. It needs to keep working. Sometimes the brain can adapt and grow all on its own and sometimes it cannot.
Maddy is struggling to adapt to the changes that naturally occur in the brain at the age of 6-7....and there is a reason why most studies say that ABA is MOST effective before the age of 7....so MUCH needs to be accomplished.
Now it isn't full blown scary regression or anything like that. I know we are not that far in it. But there are obvious signs that she is having sensory issues, social issues and communication issues. And she has become very Aspergers-ish when it comes to obsessions. (Mario)
Dr. MAL wants to rule out Absence Seizures as well so we are in contact with Maddy's Pediatrician (Dr. S) as well. (Absence seizures are short periods of "blanking out" or staring into space and like other kinds of seizures, they are caused by abnormal activity in a person's brain.)
We will go back to Speech and OT to get evaluations as well. Clearly there are things going on and we want to know the best ways to address everything before we can make a clear action plan.
But the reality is: there needs to be an action plan.
To be honest. it hurts. You never want to see your child suffer and many people don't understand what kind of "suffering" a child with autism has. Simply put: if you were unable to communicate with ANYONE on how you were feeling, your thoughts on life, your general NEEDS, or just have a very simple connection with another human being - would you not think of that as suffrage?
To be surrounded by a world who you didn't understand and couldn't understand you.
To want to have peers who connected with you. But can't make those relationships because your brain just doesn't' communicate like everyone else's?
Everyone has had a time (or several times) in their life where they felt left out, alone, misunderstood. Everyone has had a moment where they were made fun of or not included. Everyone has gone home to their mother at least ONCE in their life, with tears in their eyes saying "Why don't they like me?"
Imagine a life of perpetual "what is wrong with me"?
As a mother, I want to protect my child and I want my child to soar. To teach them all I know and help them accomplish what they love and dream about.
I will never stop fighting for Maddy.
The thought is daunting. The reality is terrifying.
She is worth every bit of it.
To say I'm tired already would be an understatement.
But I have to remain ever thankful for the time and the development she has had. That she can communicate with me - even if I can't quite understand everything - even if it comes after an angry outburst. That I had 4 years of relatively good times.
So now we go back into the trenches. So much is unknown. One thing I do know, God is with us. He has the plan. and HE will prevail.
As our verse has always said: "I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7
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