This post is a flashback to something I wrote on Facebook in December of 2015.
Recovery is on the horizon for us.
Autism treatment for us has always been about taking two steps forward and one back. Right now we are in a forward movement for my son thank to Dr. Usman's office. Dr. Miller suspects PANDAS and put Hayden on an antibiotic, in addition to Nystatin again for yeast that showed up in his testing. In addition to changes made to his supplements.
Huge gains the past few weeks. He seems more typical. Still needs a 1:1 aide. Still spinning in circles. Suddenly noise sensitive again.
But he's going full time gen ed! I've been fighting the school for this for three years and they keep fighting me back. A month ago they emailed and SUGGESTED IT THEMSELVES. And they chose him for a main role in the Third Grade Christmas play. I thought, who thought it would be a good idea to put the kid with autism (who hates crowds and loud noises) in front of a huge crowd? But you know what? I think he's going to nail it.
The thing that pushed me over the edge to start Biomed was a recovery video. Proof from other parents that it works. So I feel I need to pay it forward.
Biomed works. Keep it up Warriors. I know how it feels when you're in a backward movement, and things seem out of control. Scripting, aggression, self-injury, diarrhea, random red spots, suspended from school. Due Process. IEP meetings that are so negative, random people suggesting meds, people at the store giving you rude looks, random people telling you "he doesn't look like he has autism," bringing your own damn cupcakes to the birthday party for the 387th time. Your kid coming home sad from school because they made gluten-y gingerbread houses at school but the teacher didn't bother to ask you to send in GF so now you have to go get the ingredients and make one tonight. Your kid coming home from a relative's house (who isn't completely on board) worse than when you sent them.
People I have BEEN there. On most accounts I'm STILL there. But I keep truckin'.
None of us can afford this. We sacrifice where we can. I rarely buy myself new clothes. No hair stylist, no nails done, no fancy jewelry. But I paid to take my kid to one of the top Autism clinics in the country and it's paying off.
My advice to anyone still reading at this point? Join the Facebook groups. Read every thread. Even if you don't think it applies to you. Read every comment. Sometimes the comments are full of little nuggets of info that WILL apply to you. And sometimes you'll need that info in 6 months, and you are aware that it exists because you read it earlier. I heard about PANDAS 4 years ago and didn't think it applied to my son. I'm so glad I had an idea about it and where to start looking!
Ask questions! And don't take any one person's suggestions/advice/comments too seriously. Take what is said, take what your doctor tells you, and then go to google. Look for RESEARCH articles, not just opinions or news stories. Listen to your Mommy gut; if you don't think your child is ready for something, even if your doctor suggested it, ask more questions! You can always do it later but you can't UN-do it.
We can get there! Keep going. I love all of you for being here. I love my Facebook group friends for asking questions, for answering my questions, for introducing me to the right groups, for listening.
2018 Edits:
Hayden nailed the Christmas Program in front of hundreds of people! He was funny and said his lines perfectly. His social skills are blossoming and he's been more conversational lately. He doesn't have much noise sensitivity, unless it's his sister's crying. He no longer has a 1:1 aide! He's doing amazing in mainstream class! So much amazingness. Autism is Treatable.
Recovery is on the horizon for us.
Autism treatment for us has always been about taking two steps forward and one back. Right now we are in a forward movement for my son thank to Dr. Usman's office. Dr. Miller suspects PANDAS and put Hayden on an antibiotic, in addition to Nystatin again for yeast that showed up in his testing. In addition to changes made to his supplements.
Huge gains the past few weeks. He seems more typical. Still needs a 1:1 aide. Still spinning in circles. Suddenly noise sensitive again.
But he's going full time gen ed! I've been fighting the school for this for three years and they keep fighting me back. A month ago they emailed and SUGGESTED IT THEMSELVES. And they chose him for a main role in the Third Grade Christmas play. I thought, who thought it would be a good idea to put the kid with autism (who hates crowds and loud noises) in front of a huge crowd? But you know what? I think he's going to nail it.
The thing that pushed me over the edge to start Biomed was a recovery video. Proof from other parents that it works. So I feel I need to pay it forward.
Biomed works. Keep it up Warriors. I know how it feels when you're in a backward movement, and things seem out of control. Scripting, aggression, self-injury, diarrhea, random red spots, suspended from school. Due Process. IEP meetings that are so negative, random people suggesting meds, people at the store giving you rude looks, random people telling you "he doesn't look like he has autism," bringing your own damn cupcakes to the birthday party for the 387th time. Your kid coming home sad from school because they made gluten-y gingerbread houses at school but the teacher didn't bother to ask you to send in GF so now you have to go get the ingredients and make one tonight. Your kid coming home from a relative's house (who isn't completely on board) worse than when you sent them.
People I have BEEN there. On most accounts I'm STILL there. But I keep truckin'.
None of us can afford this. We sacrifice where we can. I rarely buy myself new clothes. No hair stylist, no nails done, no fancy jewelry. But I paid to take my kid to one of the top Autism clinics in the country and it's paying off.
My advice to anyone still reading at this point? Join the Facebook groups. Read every thread. Even if you don't think it applies to you. Read every comment. Sometimes the comments are full of little nuggets of info that WILL apply to you. And sometimes you'll need that info in 6 months, and you are aware that it exists because you read it earlier. I heard about PANDAS 4 years ago and didn't think it applied to my son. I'm so glad I had an idea about it and where to start looking!
Ask questions! And don't take any one person's suggestions/advice/comments too seriously. Take what is said, take what your doctor tells you, and then go to google. Look for RESEARCH articles, not just opinions or news stories. Listen to your Mommy gut; if you don't think your child is ready for something, even if your doctor suggested it, ask more questions! You can always do it later but you can't UN-do it.
We can get there! Keep going. I love all of you for being here. I love my Facebook group friends for asking questions, for answering my questions, for introducing me to the right groups, for listening.
2018 Edits:
Hayden nailed the Christmas Program in front of hundreds of people! He was funny and said his lines perfectly. His social skills are blossoming and he's been more conversational lately. He doesn't have much noise sensitivity, unless it's his sister's crying. He no longer has a 1:1 aide! He's doing amazing in mainstream class! So much amazingness. Autism is Treatable.
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| Recent trip to the Children's Museum, where the kids put this statue back together in their own silly way. |
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