We're back on the rollercoaster that is life with an autistic child, or maybe it's just life in general. Elise began stimming a lot last week. I found her to be much more withdrawn and distant and much less focused. We had increased her Abilify dosage, so I was hoping to see positive changes. Instead, we saw that the things Abilify is supposed to help were becoming worse. Sigh...I actually think the two are unrelated this time. I haven't figured out why we're seeing the worsening symptoms, but I still suspect yeast overgrowth sparked by the antibiotic she was on 2-3 weeks ago. Our parent trainer also noted in our weekly meeting that they were seeing a lot more stims. The example she used was that they were increasing from 20% of the time to 70-80% of the time. Given my suspicion of yeast overgrowth, I increased her probiotic to a full capsule instead of her usual 1/2 capsule. She's returning to her usual self now, thank goodness. She's no longer irritated looking in her bottom area, the dry spot on her back is disappearing (eczema?) and she's no longer engaging in inappropriate laughter. She's still stimming, but it's mellowing. She's engaging with us better than last week, but maybe not quite as well as she has been other weeks. I believe that she is coming back.
This lastest downturn has driven me to get back on track with going gluten free again. I'm also beginning JuicePlus so that we can improve Elise's immune system. My hope is that she'll get sick less and avoid needing antibiotics. Then, we won't have to go through this constant cycle of sick, antibiotic, worsening symptoms and less ability to learn. If we can keep her healthy more often, she'll be in a learning state much more often. I had a 15 minute conversation with the Queen of Health about JuicePlus last week. It was a complete sales job, but I think there is a lot of sincerity. I trust Elise's doctor and feel that she wouldn't lead me into a scam. Plus, there is research being done at great universities that supports JuicePlus claims. Elise tried it today and really liked it. I'm not sure of the cost. I'm hoping that we can manage to get samples to start and make sure it works well for Elise. B could also really use it since he doesn't eat all that well and he's always been somewhat sickly.
I've been working really hard to set up services for Elise AGAIN. I found a speech provider that I had a really good feel about. It's an hour from our home, but the owner is willing to accomodate our restricted time availability, so we're going for it. She'll attend 2 hours per week, once on Friday morning and again on Monday or Wednesday from 5-6pm. For the Friday morning, we're hoping for the 9-10 time slot. Then, we'll just drive her to her nanny's house and the nanny will take her to speech. It's only about 5 miles (20 minutes) from her nanny's house to the speech center. It would be stupid for our nanny to come all the way out to our place only to drive an hour back towards her house to get to the speech center. We're also going to continue with her current speech provider using our insurance. Her current therapist is much more medically, clinically based which Elise really needs right now. This new place claims that they're open to working with our other speech therapist, so we'll see how that goes.
Now, OT services are a completely different story. I've been back and forth with the school district trying to find out how to get started with OT. Mind you, per our mediation agreement, Elise was supposed to spend much of the summer receiving OT. Hmmm...that really happened. Anywho, I have alarm bells going off about what is being provided now. Our agreement states that we are to have a non-public agency provide her services. They had an OT call me to schedule a time. I didn't click with the therapist on the phone. She seemed impatient and rude. Just the kind of person who would be perfect working with a young, non-compliant autistic 3 year old (this statement is laden with sarcasm). Something just didn't seem right to me, so I cancelled our first session tomorrow until I spoke with our lawyer. Well, when I called to cancel, I discovered that the therapist's phone number is the school district's office. I'm confused because our agreement says we're to have a non-public agency (NPA). The lawyer said I should ask this therapist if she is an NPA. If not, then the agreement is not being followed. She can step in at that point if we need her. This just sucks. The lady from the school district that set this up reminds me of the original one we worked with who pushed us into the most restrictive environment for Elise and pretended that she was doing us a big favor. Like I said, alarm bells are going off all over the place for me. I have to trust my intuition on this. We're being screwed. They waste so much of Elise's precious healing time with this crap and they never win. I mean, this is my child's future, I'm not going to back down from what we legally agreed to have. Anyway, this is up in the air for the time being.
That's kind of all that is happening right now, as if that's not enough. Tonight I was logged onto a Biomed Mammas group for mom's of kids with autism who are using biomedical interventions. There is a new member who posted a bit about her story. She said that until 18 months, her daughter was not autistic. By 2, she was diagnosed. She is still mostly non-verbal at the age of 4. She posted pictures of her beautiful little girl, one when she was not yet autistic and a current picture. It was like looking through old pictures of Elise. She wrote "I love her so much but I miss the sparkle and light in her eyes and face. She is still a very happy little girl but it's like part of her is missing and I would gladly give whatever I can to get even half of it back." I ache for this mother because it's exactly how I feel about Elise. What is happening to these children. Above are my pictures of Elise before and after.
This lastest downturn has driven me to get back on track with going gluten free again. I'm also beginning JuicePlus so that we can improve Elise's immune system. My hope is that she'll get sick less and avoid needing antibiotics. Then, we won't have to go through this constant cycle of sick, antibiotic, worsening symptoms and less ability to learn. If we can keep her healthy more often, she'll be in a learning state much more often. I had a 15 minute conversation with the Queen of Health about JuicePlus last week. It was a complete sales job, but I think there is a lot of sincerity. I trust Elise's doctor and feel that she wouldn't lead me into a scam. Plus, there is research being done at great universities that supports JuicePlus claims. Elise tried it today and really liked it. I'm not sure of the cost. I'm hoping that we can manage to get samples to start and make sure it works well for Elise. B could also really use it since he doesn't eat all that well and he's always been somewhat sickly.
I've been working really hard to set up services for Elise AGAIN. I found a speech provider that I had a really good feel about. It's an hour from our home, but the owner is willing to accomodate our restricted time availability, so we're going for it. She'll attend 2 hours per week, once on Friday morning and again on Monday or Wednesday from 5-6pm. For the Friday morning, we're hoping for the 9-10 time slot. Then, we'll just drive her to her nanny's house and the nanny will take her to speech. It's only about 5 miles (20 minutes) from her nanny's house to the speech center. It would be stupid for our nanny to come all the way out to our place only to drive an hour back towards her house to get to the speech center. We're also going to continue with her current speech provider using our insurance. Her current therapist is much more medically, clinically based which Elise really needs right now. This new place claims that they're open to working with our other speech therapist, so we'll see how that goes.
Now, OT services are a completely different story. I've been back and forth with the school district trying to find out how to get started with OT. Mind you, per our mediation agreement, Elise was supposed to spend much of the summer receiving OT. Hmmm...that really happened. Anywho, I have alarm bells going off about what is being provided now. Our agreement states that we are to have a non-public agency provide her services. They had an OT call me to schedule a time. I didn't click with the therapist on the phone. She seemed impatient and rude. Just the kind of person who would be perfect working with a young, non-compliant autistic 3 year old (this statement is laden with sarcasm). Something just didn't seem right to me, so I cancelled our first session tomorrow until I spoke with our lawyer. Well, when I called to cancel, I discovered that the therapist's phone number is the school district's office. I'm confused because our agreement says we're to have a non-public agency (NPA). The lawyer said I should ask this therapist if she is an NPA. If not, then the agreement is not being followed. She can step in at that point if we need her. This just sucks. The lady from the school district that set this up reminds me of the original one we worked with who pushed us into the most restrictive environment for Elise and pretended that she was doing us a big favor. Like I said, alarm bells are going off all over the place for me. I have to trust my intuition on this. We're being screwed. They waste so much of Elise's precious healing time with this crap and they never win. I mean, this is my child's future, I'm not going to back down from what we legally agreed to have. Anyway, this is up in the air for the time being.
That's kind of all that is happening right now, as if that's not enough. Tonight I was logged onto a Biomed Mammas group for mom's of kids with autism who are using biomedical interventions. There is a new member who posted a bit about her story. She said that until 18 months, her daughter was not autistic. By 2, she was diagnosed. She is still mostly non-verbal at the age of 4. She posted pictures of her beautiful little girl, one when she was not yet autistic and a current picture. It was like looking through old pictures of Elise. She wrote "I love her so much but I miss the sparkle and light in her eyes and face. She is still a very happy little girl but it's like part of her is missing and I would gladly give whatever I can to get even half of it back." I ache for this mother because it's exactly how I feel about Elise. What is happening to these children. Above are my pictures of Elise before and after.
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