Today Annalise had her full 4 hour testing for Autism. Now they are saying that she is NOT autistic. That's not how it sounded a month ago. I was warned that this would happen.
While Annalise shows the behavior side of Autism, she does not display the social communications deficit. So in other words they are saying she is NOT on the spectrum. That's great right? But why do I feel that sense of dread that because she is so social thanks to my training that this could come back to haunt us down the road. They only spend a short time with her I spend all day with her and I see a lot more than anyone else. I'm worried that she is on the cusp of the spectrum and it could hurt her in school because of not getting the proper diagnosis NOW. I also feel like the stuff that screams autism is being downplayed because of her being a love bug. Every child is different.
They did say that she has a sensory processing disorder but won't put it on paper in those words due to insurance companies do NOT recognize it. SERIOUSLY?
They did give her a diagnosis of feeding disorder and delayed milestones. So they have suggested therapy and OT for Anna. We are still waiting for an OT since the last visit. They kept saying she has a rigid temperament. Well NO kidding.
This was just their summary today and I was told that they would email me their full findings. They also said that if the therapies do not work we would talk meds. Uh hold up why does she need meds? She's not add or adhd.
I am going to ask the pediatrician next month if he can get us a second opinion if necessary. They didn't even test her for 4 hours like I was told so. So we shall see.
I guess my biggest thing is All of her behavior POINTS to autism, techniques and therapies for kids with autism work wonderfully for her, then HOW is she not mildly or should I say HIGHLY functioning autistic? All because she is social and smart? I'm sorry but I don't buy that.
Tuesday, December 16, 2014
Thursday, November 6, 2014
Is my kid Autistic?
Anna was born a healthy child. She hit all of the milestones as a baby right on target. Was always high in percentile with her height and weight. Even when she started eating solids she would devour everything. Everything was going great until she hit 18 months old. I watched my baby girl go from eating everything to pretty much nothing and I do mean nothing. I talked with the pediatrician and he noted that there were some small red flags for autism but he was not worried about them. I was worried but trusting this Dr. when he told me this. As time went on we saw flourish with her intelligence and mastering things but the food aversions remained and got worse. There was a lot of refusal to potty train which may have been some negligence on my part. Over time I kept voicing my concerns to the Dr and time and time again he pointed out that she shows little signs but he's not worried. At this point I am talking to friends of mine with children on the spectrum (Thank you Theresa, Erin, and Teesha!) I see Anna doing some of the stuff but not all. I am being very vigilant at this point.
Fast forward to this summer where the signs are getting worse, She has become the work of TWO children. Yes she appears normal and if you are around her you would not really pick up on it, well someone did. I was asked if Anna had asburgers syndrome. I had silently thought this but to have someone who had just met my child ask me floored me. She saw in 5 minutes what our last pediatrician ignored in my opinion. When we returned from our summer travels I immediately started the process to get her tested.
We waited 2 months for our appointment this week. I was under the impression that it would be the full on testing, it was not. It was an assessment to see if she needed further testing. Which she does. Because she is so young they did not want to put her through the ringer if not need be. During the assessment the doctor saw what I have been seeing since Anna was 18 months old. She said that all of Anna's behavior is Autistic but she needs more testing for the social side. Anna displayed some of the social cues but not enough to get a diagnosis that day. Anna definitely has sensory processing disorder, hence the non potty trained, texture issues, food aversions, and the reactions to really loud noises. When she explained how hard it is for Anna to process things it broke my heart. I knew that she was struggling but I didn't know how bad. It still makes me cry thinking about it. She did say that Anna is very smart and high functioning which is awesome.
Course of treatment to help Anna: She has to see a nutritionist, food therapist, and receive Occupational therapy. We are worried about the OT as the doc said that our tricare does not cover it. I am looking into programs out there to help cover the cost just in case they won't cover it. She suggested 2 books for us to read to help. We are now waiting for ANOTHER appointment for the testing which could be January at the earliest. There are programs we can apply for, to help but we have to have the diagnosis in writing. It's very frustrating. I feel like like I am right back where I started from.
At least now I know that I AM NOT crazy. That I was not forcing something on my kid. Yes people actually told me this when I had mentioned the issues I was having with Anna and the testing.
Now to start the barage of appointments to help my baby girl.
Fast forward to this summer where the signs are getting worse, She has become the work of TWO children. Yes she appears normal and if you are around her you would not really pick up on it, well someone did. I was asked if Anna had asburgers syndrome. I had silently thought this but to have someone who had just met my child ask me floored me. She saw in 5 minutes what our last pediatrician ignored in my opinion. When we returned from our summer travels I immediately started the process to get her tested.
We waited 2 months for our appointment this week. I was under the impression that it would be the full on testing, it was not. It was an assessment to see if she needed further testing. Which she does. Because she is so young they did not want to put her through the ringer if not need be. During the assessment the doctor saw what I have been seeing since Anna was 18 months old. She said that all of Anna's behavior is Autistic but she needs more testing for the social side. Anna displayed some of the social cues but not enough to get a diagnosis that day. Anna definitely has sensory processing disorder, hence the non potty trained, texture issues, food aversions, and the reactions to really loud noises. When she explained how hard it is for Anna to process things it broke my heart. I knew that she was struggling but I didn't know how bad. It still makes me cry thinking about it. She did say that Anna is very smart and high functioning which is awesome.
Course of treatment to help Anna: She has to see a nutritionist, food therapist, and receive Occupational therapy. We are worried about the OT as the doc said that our tricare does not cover it. I am looking into programs out there to help cover the cost just in case they won't cover it. She suggested 2 books for us to read to help. We are now waiting for ANOTHER appointment for the testing which could be January at the earliest. There are programs we can apply for, to help but we have to have the diagnosis in writing. It's very frustrating. I feel like like I am right back where I started from.
At least now I know that I AM NOT crazy. That I was not forcing something on my kid. Yes people actually told me this when I had mentioned the issues I was having with Anna and the testing.
Now to start the barage of appointments to help my baby girl.
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