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    7 kids? Special needs? Homeshooling? Enough said.

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  • Biography
    Christian homeschooling mom of 7 (2-13)
  • Location
    Nova Scotia, Canada
  • Interests
    Blogging, reading, cuddling, knitting
  • Occupation
    Mom, Homeschooler, Therapy Chauffeur

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  1. That would be neat to participate in brain scan studies! Last week I passed my contact info to a primary researcher of autism related issues (mainly therapy efficacy but some of her grad students are working on other things that we could speak to) here. No brain imaging studies right now, though :). I'm keenly interested in changing the language around autism. I don't believe it's new, an epidemic, or a disease. I have an informal diagnosis myself (kids' psych keeps mentioning it), DH's father likely was, and I have many diagnosable but undiagnosed people in my family on both sides. I think what we are ACTUALLY seeing is a new, more specific, formal way of classifying an existing group of people.
  2. As a follow up, one of our five DID regress (lost speech and social motivation) at the 'typical' time - again, no vaccines. The others didn't. My oldest (no regression) has a recently discovered chromosonal microdeletion 15q11.2 or Burnside Butler syndrome. She is actually missing 4 genes (edit: it's 7 actually, just got the physical copy of the test results) relating to the central nervous system. The lack of a protein one of these genes makes results in disorganized early brain structure. Her psychiatrist thinks this is why we are all autistic (and going back a few generations - we started diagnosing late because we thought our kiddos were...'normal' - for our family, they are). I can't wait to see the test results for the rest of us. Anyway, not all autistics have this microdeletion - autism is the larger lake, there are many little streams that feed it. For example, it's currently thought that 15-20% of autism has a known genetic causation. Of those cases 10% have Burnside Butler...not very many, right? Even so, that 10% of cases is still the LEADING genetic cause, so there must be MANY other contributing causes genetically. So, I think it's complicated. Causation research/theories often tends to oversimplify things.
  3. And on an anecdotal note - I have 5 diagnosed children who were never vaccinated.
  4. I like the Teach Me Joy Cursive - the Joy of Cursive? It is really straight forward.
  5. I mention the pleasantness because it has made therapists and lay people alike doubt the diagnosis. Our kids are 'too happy', 'too nice', I am well known to 'smile too much' etc. I well realize every autistic person is different. I have 5 diagnosed at this point and they are all different :). One of the markers of this syndrome is 'happy'. If it's maternally inherited it tends to look a bit like Angelmans - it's very closely located - which also has a lot of smiling and excitability. Here is something to read that isn't a technical paper and is somewhat shorter; http://evolvegene.com/genetic-disorders-familyready/15q11-2-deletion-syndrome/ It's estimated at 1/12000 occurrence Our kids are all verbal (now) - thanks speech therapy, and are all fairly high functioning. It does have variable expression, like autism, it runs on a spectrum of effects. We mostly have cognitive stuff - the four deleted genes are central nervous system related. We have one known birth defect that they told us could be a genetic disorder while I was pregnant (no tests done then for the safety of the twins). We have some stuff that could be heart related in a couple of kids that we will have to chase down (abnormal hearts in the mix of the syndrome). As always we have to watch for schizophrenia, one child has some early concerning behaviour. So...I'm glad for more testing, glad it was found, and hope to track it down.
  6. My oldest DD (13 - diagnosed this fall ASD/ADHD/low processing speed/depression) had microarray DNA testing done (hospital-ordered by psychiatrist) last month and the results just came back last night. She has a rare genetic syndrome. It's likely the rest of us do too. 15q11.2 - Burnside Butler. It would explain a lot (one of our guys has a known birth defect that may require surgery). It also explains why we are the 'pleasant' autistics, which has made some people doubtful. Genetic tests all around here over the next few months. Thanks for praying and thinking of us - it feels mightly lonely sometimes.
  7. SO, I started a social group for American School families, if anyone wants to hang out and chat about how things are going :).
  8. Private services are far away and $$$, local services are rather lacking :/. We did start medication with this DD and it has been so, so phenomenal for her. I can't even describe it. She's less resistant, more social, and has stopped hurting herself. I am so, so thankful. EIBI is early intervention :). Over th last year we have had 5 kids diagnosed with ASD and co-morbid disorders of all kinds, I'm still adjusting, I guess.
  9. Thank you all. Her doctor referred us to just see the psychiatrist, who did mention that psychotic episodes are not uncommon with ASD, sometimes more sometimes less. She did end up on an anti-psychotic used for schizophrenia. It has been such a blessing. She does exhibit paranoid behaviour. I'm just not sure when it crosses the line into schizophrenia. I will talk to her psychiatrist further however. It had been a busy year, we had two more kids diagnosed with ASD, and two in diagnostics. Our psychiatrist started genetic testing with our oldest. He has mentioned my own autistic traits several times so I may also purse a diagnosis. Cheryl: Yes, my husband's brother died young at 56 of a massive heart attack. We do have some confidence that he is now at peace and free, he had a difficult life. He had a rather severe case of schizophrenia and we lived in the same home with him for several years when we were first married. I'm so glad your children were able to access help early. Our second daughter who I am speaking of here does have many suspicions and paranoias, so I'm not ruling it out. She also has a persistent set of imaginary friends that she says she has real conversations with. It's difficult for me to say on that one.
  10. Call your local community college :). Ours gives free adult education to people without diplomas.
  11. I highly recommend you check out CLE LA. It hits most of what you are asking for.
  12. Once a year I write a report for the province. It takes a few hours for each child. I look at their tests, write down any marks, talk about what we've done in mostly general terms, and...I'm done. I don't list all the DVDs, all the docs, all the...etc. I keep it pretty general and talk about the progress we've made. I dint have the brain space for detailed, daily, record keeping.
  13. I'm not willing to commit to something for that long. 2917 is a long way away. ;)
  14. TT? Great for independence and definitely designed for average kids. We are happy so far!
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