Hearing the word “Autism” for the first time.
What a traumatic day that was for me. Autism. What was this? I didn't really know much about it, but it didn't sound good.
We had been keeping our speech therapy sessions religiously, never missing one. I was on a mission to teach this child how to talk. Taylor's words were coming one by one and my list on the refrigerator was finally beginning to grow but he was still unable to come up with his own sentences.
What I mean by this is that Taylor was learning how to talk by putting full phrases together, not words. An example would be how he always used the phrase, “Can I have more, _________" and then would insert whatever word would work.
He would talk with his videos and his words were becoming more and more clear. People could understand what he was saying a little more easily now. Jungle Book and Mary Poppins were his favorite videos and he would watch them over and over again.
(Here is a sweet video of Taylor dancing to Mary Poppins. I swear I could understand every word he said.)
What a traumatic day that was for me. Autism. What was this? I didn't really know much about it, but it didn't sound good.
We had been keeping our speech therapy sessions religiously, never missing one. I was on a mission to teach this child how to talk. Taylor's words were coming one by one and my list on the refrigerator was finally beginning to grow but he was still unable to come up with his own sentences.
What I mean by this is that Taylor was learning how to talk by putting full phrases together, not words. An example would be how he always used the phrase, “Can I have more, _________" and then would insert whatever word would work.
He would talk with his videos and his words were becoming more and more clear. People could understand what he was saying a little more easily now. Jungle Book and Mary Poppins were his favorite videos and he would watch them over and over again.
(Here is a sweet video of Taylor dancing to Mary Poppins. I swear I could understand every word he said.)
One night, Taylor amazed and entertained Mike and I for two hours as he stood on our bed and recited word for word, the entire movie of the Jungle Book, complete with the voice inflections. He was two and a half. Looking back I realize he probably grunted most of the words but we knew what he was saying and Taylor knew what he was saying. We loved every moment of this impromptu play but it did get me thinking. The speech therapy seemed to be working, but something still wasn't right.
The next time I saw his speech therapist, I told her what was bothering me. I asked her, “Why can Taylor recite an entire hour and a half long video to me, can say phrases that you are teaching him, but still cannot make his own sentences? Why can he say the words, ‘outside’ and ‘I’ and ‘Go’ and ‘Want’ but cannot figure out how to put these words together on his own to say ‘I want to go outside?’”
His speech therapist looked at me and I could tell she was flustered. She knew something was up but wasn't saying anything. I could see it in her eyes. Instead she said, “Let me see if I can get our child psychologist out here to see Taylor.” She wouldn't tell me why, just that she wanted to rule some things out first.
I wasn't ready for what I was about to hear. I will let you know that right now.
I WAS NOT READY.
The psychologist came out the next week. She spent about thirty minutes observing Taylor. Playing with him, asking us questions. To Mike and I, they were strange questions. I remember it like it was yesterday. Here’s an example of some of these questions.
Doctor- “Does Taylor have a high tolerance for pain?”
Me- “Well, last week he stuck his finger in hot candle wax at a birthday party and didn't even cry. Does that count?”
Let me pause right here. The reason I even mentioned this incident was because Taylor had just done this the week before. The one and only time that it seemed something didn't hurt him.
Also, at this exact moment, as if on cue,Taylor dropped a Blue’s Clues video tape on his big toe and immediately grabbed his toe, hopped around and started crying. It took his dad kissing it to make it better. THIS IS IMPORTANT TO REMEMBER!
Doctor- “Does Taylor like textures?”
Me-“Well, he loves getting the fall leaves in his hands and crunching them next to his ear so he can hear the sounds.”
Doctor - “Does he have a sensitive gag reflex?”
Me- “Yes. Very sensitive.”
Doctor- “Is he affectionate?” (While she has been asking us these questions, Taylor has been jumping off the couch into her arms. He has also been pulling on her bag because he thinks she is there for a “play time”. He is totally aware this woman is standing in our living room and he wants her undivided attention because he wants to get rewards like he does when his speech therapist comes.)
Me-While looking at Taylor jump in her arms, “Well, yes…obviously he loves people! “ I said pointing to him. “He loves kisses and hugs and cuddling with Mommy and Daddy, don’t you Taylor?” At that moment, he leaves her and comes over to me so I can pick him up and love on him.
Let me explain something real quick. My husband and I had NO IDEA what this doctor was looking for. We thought she was going to tell us why he wasn't talking. It was at the end of this 30 minute “interview” that she first mentions autism as a possible diagnose…as she is walking out the door. She told us to expect her report within the week.
We are stunned.
When she leaves, I break down and cry. I felt like the floor had been ripped out from under my feet and I just sank into the couch. The only thing I knew about autism at that time was from the movie Rain Man. One thing I did know was that my Taylor WAS NOT like that! Not even close! What the hell?
I was a mess. Part of me felt a sense of relief that I wasn't going crazy and that I had something to research and tackle, but the other part of me was devastated. She had to be wrong. What if she wasn't? Why him? WHY?!
A week later, we get the report. In the report this doctor states that: 'the parents have noticed high tolerances for pain', and 'the child is non-affectionate', 'child appears to be severely delayed in speech' and 'indifferent to my attention and appears to be socially delayed'. It then went on to diagnose him as having severe autism and suggested that there was a high possibility of having to place Taylor in a special institution in years to come.
LET ME STOP RIGHT HERE. I am about to use explicit language so, you may want to skip the next few sentences.
Breathe Dawn…
This woman should lose her f**king license! Was she even paying attention?! After spending approximately 30 minutes with my child, she writes a report describing some random child. Certainly NOT the child that had spent the entire time she was there with him trying to get her attention. This report could not possibly be about the child that was crying because he hurt his toe, while she stood there watching! She didn't even quote us correctly.
Did she just make sh!t up?! I was FURIOUS! Enraged! I called my husband in tears and read him the report. He honestly thought we got someone else’s report. I was beside myself, almost hysterical! Okay, fine. I was hysterical!
Here is what scares me the most. What if we had believed her? She had recommended that we put my child in an institution! The curse words I want to say right now just remembering this would make you blush. Almost sixteen years later and this still infuriates the hell out me.
Here is the important thing that I want you to take away from this. Believe your heart. Trust your instinct. Don’t just get one opinion. Don’t just get two! Do your research.
That’s what we did. We looked up everything we could find on autism. We did the tests with Taylor. Some he passed, some he didn't. We read everything we could find. What about diet? What about social therapy? Read, read, read. Research, research, research! That became our world.
The one good thing that came out of this awful report is that it lit a fire under me to prove this woman wrong. I had something solid I could research. I was no longer playing a guessing game with Taylor. I had something I could grab a hold of and fight. We learned that autism meant more than Rain Man. We learned a lot!
Autism.
Okay.
We got this, Taylor!
We are all in this together and we will do everything in our power to make sure your life is amazing.
Doctors be damned!
Me- “Yes. Very sensitive.”
Doctor- “Is he affectionate?” (While she has been asking us these questions, Taylor has been jumping off the couch into her arms. He has also been pulling on her bag because he thinks she is there for a “play time”. He is totally aware this woman is standing in our living room and he wants her undivided attention because he wants to get rewards like he does when his speech therapist comes.)
Me-While looking at Taylor jump in her arms, “Well, yes…obviously he loves people! “ I said pointing to him. “He loves kisses and hugs and cuddling with Mommy and Daddy, don’t you Taylor?” At that moment, he leaves her and comes over to me so I can pick him up and love on him.
Let me explain something real quick. My husband and I had NO IDEA what this doctor was looking for. We thought she was going to tell us why he wasn't talking. It was at the end of this 30 minute “interview” that she first mentions autism as a possible diagnose…as she is walking out the door. She told us to expect her report within the week.
We are stunned.
When she leaves, I break down and cry. I felt like the floor had been ripped out from under my feet and I just sank into the couch. The only thing I knew about autism at that time was from the movie Rain Man. One thing I did know was that my Taylor WAS NOT like that! Not even close! What the hell?
I was a mess. Part of me felt a sense of relief that I wasn't going crazy and that I had something to research and tackle, but the other part of me was devastated. She had to be wrong. What if she wasn't? Why him? WHY?!
A week later, we get the report. In the report this doctor states that: 'the parents have noticed high tolerances for pain', and 'the child is non-affectionate', 'child appears to be severely delayed in speech' and 'indifferent to my attention and appears to be socially delayed'. It then went on to diagnose him as having severe autism and suggested that there was a high possibility of having to place Taylor in a special institution in years to come.
LET ME STOP RIGHT HERE. I am about to use explicit language so, you may want to skip the next few sentences.
Breathe Dawn…
This woman should lose her f**king license! Was she even paying attention?! After spending approximately 30 minutes with my child, she writes a report describing some random child. Certainly NOT the child that had spent the entire time she was there with him trying to get her attention. This report could not possibly be about the child that was crying because he hurt his toe, while she stood there watching! She didn't even quote us correctly.
Did she just make sh!t up?! I was FURIOUS! Enraged! I called my husband in tears and read him the report. He honestly thought we got someone else’s report. I was beside myself, almost hysterical! Okay, fine. I was hysterical!
Here is what scares me the most. What if we had believed her? She had recommended that we put my child in an institution! The curse words I want to say right now just remembering this would make you blush. Almost sixteen years later and this still infuriates the hell out me.
Here is the important thing that I want you to take away from this. Believe your heart. Trust your instinct. Don’t just get one opinion. Don’t just get two! Do your research.
That’s what we did. We looked up everything we could find on autism. We did the tests with Taylor. Some he passed, some he didn't. We read everything we could find. What about diet? What about social therapy? Read, read, read. Research, research, research! That became our world.
The one good thing that came out of this awful report is that it lit a fire under me to prove this woman wrong. I had something solid I could research. I was no longer playing a guessing game with Taylor. I had something I could grab a hold of and fight. We learned that autism meant more than Rain Man. We learned a lot!
Autism.
Okay.
We got this, Taylor!
We are all in this together and we will do everything in our power to make sure your life is amazing.
Doctors be damned!
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