EK's ARD/ update
Last Friday, I went to EK's annual ARD. I had spoken with her teacher and her therapists (OT and speech) so I wasn't too nervous about it. It is getting a little easier now that this was the 4th ARD. EK has all new therapists and teachers this year. I have to say it's been a difficult situation, but thankfully she's adjusting pretty well. She's back to crying/protesting when her teacher wants her to work (or maybe her teacher last year didn't tell me that she was protesting?) I told her new teacher to make her do it. Working and even playing has never been fun for EK. (Or at least since she regressed...she did play with toys appropriately when she was between 1-2 years old.) I don't know if it's because we started therapy at age 3 or if it's because we don't have a strong motivator or because she can't do the work. I really don't think it's the latter. She sure understands a lot more than you'd think, so I think she CAN do more. She just doesn't have a desire to for some reason.
Anyway, her goals this coming year are mostly functional goals. Things like:
So happy about this though!!
It is always disheartening to see little progress overall . I don't think I'll ever get over that. The ABLS is an assessment they do annually to track progress. Since her first assessment, she has regressed in many areas. I have mentioned before her regression. She was verbal until about 3 years, 9 months. A lot of speech was echolalia (repeating what we said), but she could make simple requests. How I would love to hear her talk again! More importantly though, I wish we could get her to communicate. She has no way of letting us know her needs and wants. We tried PECS (picture cards) a few years ago. Last year they tried using PECS on an ipad, but she really hasn't picked up on that. To me, this is my biggest goal for her. Communication! Whether the Lord allows her to speak again or not, she needs to be able to tell us what she wants or if she's hurting, etc.
I know she's not a typical kid with autism. Most kids with autism, have a strong motivator that they will work for. They make some progress. They catch on to making requests with PECS or signs. She is a hard one to figure out. A couple years ago, I mentioned that I was looking into Rett's Syndrome again. When she was officially diagnosed, the Developmental Pediatrician ran a few genetic tests to rule out Rett's Syndrome and Fragile X. They both came back negative. I have heard that there's a newer and better test now. Several girls test negative on the first one and then positive on the newer one. I was very close to having the test done, but after talking with our pediatrician, I decided against it. My main reason is b/c it wouldn't change the way we're doing things. She would still qualify for the services that she receives now. There aren't special medications to give girls with Rett's. I feel that we kind of ruled it out when we did the 24 hour EEG. She doesn't have seizures when she sleeps. Most girls with Rett's have seizures. I also feel like EK's big regression occurred around the time of some major dental work. That would just show that her body is hyper-sensative to things, which is typical in kids with autism. Their bodies don't detox the way typical kids bodies do. You can easily upset the balance and see regression. While I have tried various things over the past 3 years to help her body detox, nothing has been successful. I continue to research and talk to other parents who are making some progress.
We recently did some lab work to check vitamin/mineral levels, amino acids, etc. She has some inflammation in her gut that we're going to address and some deficiencies, like vitamin D. We are adding some vitamins/supplements back into our routine. We did this a few years ago and then I discontinued some. I am going to add them slowly so I can watch for negative reactions and/or improvements. Right now I just added a strong probiotic and a multi-vitamin to the vitamin D and fish oil she's been taking daily. I am praying that we'll see some benefits from this, even small improvements. I just want to help EK feel better and be healthier!
Anyway, her goals this coming year are mostly functional goals. Things like:
- washing hands
- using a fork at lunch
- making choices from pictures
- identifying key people (mom, dad, teacher)
- matching similar objects
So happy about this though!!
It is always disheartening to see little progress overall . I don't think I'll ever get over that. The ABLS is an assessment they do annually to track progress. Since her first assessment, she has regressed in many areas. I have mentioned before her regression. She was verbal until about 3 years, 9 months. A lot of speech was echolalia (repeating what we said), but she could make simple requests. How I would love to hear her talk again! More importantly though, I wish we could get her to communicate. She has no way of letting us know her needs and wants. We tried PECS (picture cards) a few years ago. Last year they tried using PECS on an ipad, but she really hasn't picked up on that. To me, this is my biggest goal for her. Communication! Whether the Lord allows her to speak again or not, she needs to be able to tell us what she wants or if she's hurting, etc.
I know she's not a typical kid with autism. Most kids with autism, have a strong motivator that they will work for. They make some progress. They catch on to making requests with PECS or signs. She is a hard one to figure out. A couple years ago, I mentioned that I was looking into Rett's Syndrome again. When she was officially diagnosed, the Developmental Pediatrician ran a few genetic tests to rule out Rett's Syndrome and Fragile X. They both came back negative. I have heard that there's a newer and better test now. Several girls test negative on the first one and then positive on the newer one. I was very close to having the test done, but after talking with our pediatrician, I decided against it. My main reason is b/c it wouldn't change the way we're doing things. She would still qualify for the services that she receives now. There aren't special medications to give girls with Rett's. I feel that we kind of ruled it out when we did the 24 hour EEG. She doesn't have seizures when she sleeps. Most girls with Rett's have seizures. I also feel like EK's big regression occurred around the time of some major dental work. That would just show that her body is hyper-sensative to things, which is typical in kids with autism. Their bodies don't detox the way typical kids bodies do. You can easily upset the balance and see regression. While I have tried various things over the past 3 years to help her body detox, nothing has been successful. I continue to research and talk to other parents who are making some progress.
We recently did some lab work to check vitamin/mineral levels, amino acids, etc. She has some inflammation in her gut that we're going to address and some deficiencies, like vitamin D. We are adding some vitamins/supplements back into our routine. We did this a few years ago and then I discontinued some. I am going to add them slowly so I can watch for negative reactions and/or improvements. Right now I just added a strong probiotic and a multi-vitamin to the vitamin D and fish oil she's been taking daily. I am praying that we'll see some benefits from this, even small improvements. I just want to help EK feel better and be healthier!
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