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AmyinMD

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Everything posted by AmyinMD

  1. I redshirted my twins although we are homeschooling. They have a June birthday and were born 2 months premature. My son in particular was not ready for seat work at age 5. They are in 2nd grade this year and I'm glad they are older for it and I gave them an extra year to mature. My 5 yo is attending Public Kindy this year. She is my first child to attend school for kindergarten and I'm blown away at the expectations for K. My dd had to write her name correctly the first week of school. She was writing it but used a couple capitals in her names (D and A which are harder to form as lowercases). I'm glad she is writing it correctly now but there were kids in the class that didn't know how to write their names at all and they needed to be doing it perfectly the very first week. I have volunteered in the class twice in the two weeks since school started and know some of the kids are probably going to have a hard time with the high expectations. I am going to go once a week to work with small groups for reading instruction. At the open house the teacher put up a work sample that is expected by Christmas. It was a paragraph of around 3 sentences with a couple words misspelled with creative spelling. There is a huge list of high frequency words that the kids need to learn as soon as possible and they have to spell them correctly. They can only use the creative spelling on new words they don't know. The kids are already reading books which just have 1 different word on each page. I'm glad my dd already knows how to read some because it all seems so whole language based. The kids are able to guess the new words from picture clues on the page. So far the reading program is the only thing we are unhappy with. My dd seems to enjoy going to school each day but she does love writing so I'm sure she'll be okay with the writing expectations. I imagine it can be a lot for other kids especially very young 5 year olds. My dd has an October birthday and is one of the older children in her class but I wouldn't hesitate to redshirt her if her birthday was near the cut off.
  2. I would ask for an emergency IEP meeting to discuss the issue. I think doing that should waive the 10 day notification period. We have hired an advocate when we've had issues with the school district. That always seems to get things moving. There should be a plan in place to prevent any further incidents. Showing up to observe the class without notice might give a good picture of what is going on too. I know of several parents that have done that in our district with special ed kids. I was close to doing it last year but didn't because the teacher was at least trying to work with us. My 4 yo son is in a self contained special ed classroom for children with severe communication needs. He isn't verbal beyond a few one word requests and I always worry about something happening at school that he isn't able to tell me. I know at least one of the other boys in his class that is quite aggressive. They always have an aide next to him but I still worry.
  3. I really like this book. It might be a good place to start. http://www.amazon.com/Special-Diets-Kids-Volumes-Combined/dp/1935274120/ref=sr_1_1?ie=UTF8&qid=1342222281&sr=8-1&keywords=special+diets
  4. The curriculum you linked does look great but it looks like it is meant for a classroom environment. It is likely more than is needed for one child. I can't imagine the cost would be worth it to teach a single child plus children with Autism have such different skills it would be very hard to use a box curriculum to meet their needs. There are many book on ABA and RDI that you could get from the library to design a home preschool program with. My son does in home ABA and we put it all together with things I piece together. He has done several drills with the book Brown Bear. There are numerous free resources for this book all over the web. There are a lot of other books that you create some very low cost resources with. I have used some of the Confessions of a Homeschooler letter stuff listed above. It is still too hard for him but I think it will be quite useful eventually. My son does not know any of his letters. We have also purchased speech picture cards to use for a variety of activities. Part of the reason we've gone with piecing things together is that my son has such unique needs and is at a lower functioning level it is hard to find things suited to him. I always have to adapt things to work for him. My son does attend school but a lot of that is because I have a hard time finding enough time to work with him one on one at home. He really needs a lot of one on one work. This fall he's going to be in an ABA classroom through our school district. I'm going to miss him and I'm sad I won't be homeschooling him but I am really happy with the class he will be in. He will be with 6 other children with Autism in a class with a teacher and 5 aides. It's a near one to one ratio and I know he will be getting lots of individual attention. There is very little to be had for services where I live aside from the school district though so that has played a factor.
  5. There are always a few tragic cases each year of Autistic children wandering away and they are later found dead because they were drawn to water and tried to go in unsupervised. My son hates baths and can't stand having his hands washed but if we are near standing water he shouldn't be in he's been known to jump in without regard to safety. We are considering an electronic bracelet for my son so if he does get out he could be found quicker. We don't live near a lake but it wouldn't take much standing water for him to have trouble in. Plus there are houses in our subdivision with swimming pools. If he managed to get into one of those it would not be good.
  6. I think that is not unusual given his age and special needs. My son with Autism is 4.5 and we are still working on potty training here. He is extremely low verbal and isn't able to tell us he has to go nor does he think to take himself. He regularly uses the toilet but that is because we take him regularly. He hides when he has to poop and screams if I try to get him to sit on the toilet. He much prefers standing which he can do for pee. There is something about sitting down on the toilet that he greatly dislikes so he avoids it. I would start with just having him wear underwear for part of the day to practice and take him regularly so he can see that he can still use the potty even with underwear on. My son spends much of the day in just underwear. He'd prefer to wear nothing but I kind of insist on the underwear or there is way too much playing with things. We still have trouble when out in public. My son completely refuses to go while at school and holds it until he gets home. If a place is unfamiliar he will scream and refuse to go. I don't think he is taking forever. I know of very few children with Autism fully trained at 3. I think my son is doing pretty well considering his challenges. Many kids with his verbal ability are in diapers much longer than he has been. I can at least see that we will get there but it is taking much longer than with a typical child.
  7. My son with ASD only eats a few things too. Most days he lives on plain quinoa/rice noodles and pb&j on GF bread. He likes pizza and hotdogs and sweets but I try not to have those in the house. He will eat other stuff if heavily prodded but it is hard because I am very busy. I don't have time to spend every spare minute trying to get healthy foods into him. It's so much fun making a nice dinner only to have him get up the minute he sees it and spend the whole dinner time running up and down the house screaming. My 8 yo twins and 5 yo are spending the week with my mom in a couple weeks. My plan is to pull his favorites and see what I can get into him. I can get him to do fresh squeezed veggie juice if I put it in a syringe. He takes some pretty yucky tasting supplements without complaint when they are in a syringe. It is incredibly tedious to syringe in juice though. He will eat green beans and carrots if heavily prodded. He is attending full day Pre-K in the fall and I'm determined his lunch is not going to consist of nothing but a couple of pb&j sandwiches every day.
  8. My son does ABA two mornings a week for 2 hours each time. He does respond better to it than anything else we've tried however since we have to pay 100% of the cost he isn't getting near enough to really make any difference. If our insurance covered it I'd max out the hours allowed. I think ABA is one of the best therapies for ASD. Unfortunately until there is a federal mandate (self funded companies can get around the state mandates which is what we have) so many kids that need it go without it or sit years on waiting lists. My son is on a 8 year wait list for state funded ABA. Right now he does ABA in our home and I like not having to take him anywhere but having other people in the house is also a distraction. If I had a choice I would probably choose for ABA to take place somewhere else. My son has been doing it over a year and he has made minimal progress unfortunately. He also gets special ed preschool, 5 speech sessions per week, and OT therapy. My son is low functioning, extremely low verbal. After a year of ABA he is now able to answer the question "what do you want?" with a one word response for familiar items. It has helped but it is painfully slow. My son spends months and months on the same drills. Right now we are doing colors. It's been on his drills for 4 months. He now can label red 25% of the time and purple 10% of the time. They have not been able to move past the first two colors because he is having such a hard time with it. Yes/no questions have been on drills from the beginning and he also works on it at speech every session. He cannot do this at all despite dozens of hours being devoted to it. Most kids I hear about seem to make better progress than my son has. I don't want to discourage anyone from doing it but it doesn't necessarily create big changes either. I've heard of people going in to huge amounts of debt to pay for it and I really don't think it is worth it if it is a financial strain. We are dropping ABA therapy at the end of August. My son will be going to a full day preschool instead that has close to a one to one ratio (1 teacher and 5 assistants for 7 children). The staff has some ABA training so while it isn't a pure ABA program it will be incorporated into his day.
  9. Federal mandate for insurance coverage. My son has Autism and almost nothing is covered. State mandates do no good because ERISA plans are exempt from them and so many companies are going to them to get around the state mandates. Expand services that are available because there are huge wait lists for many programs. The Autism program in my state has an 8 year wait list.
  10. Not Maryland. Unless of course you don't mind waiting 8 years to get services. We have a program called the Autism Waiver which will provide up to 25 hours of in home ABA free of charge. It sounds wonderful except that there are only 900 slots state wide and that isn't near enough which is why it has an 8 year wait list. My 4 yo is currently over 4100 on the wait list. We'll be lucky if he gets any services at all by the time he's a teenager. School districts here do not provide ABA. I can't even get our district to offer any sort of OT services and that is with an evaluation showing ds is in the 1st percentile on things like fine motor. He gets speech through the school district but he has to be enrolled to get this (homeschoolers do not get services here). No other services at all and my child is considered in the severe category. He's 4.5 and considered functionally nonverbal, can't even answer simple yes/no questions, not potty trained, tons of stimming, severe apraxia, etc. Can you tell I'd love to move but we bought in 2006 and are pretty stuck in our current house at the moment. You can look and see which states have Autism mandates requiring coverage of ABA. However if you have a self funded policy then they are exempt from any mandates so a lot of kids in states with mandates are still going without services. Maryland doesn't have a mandate for ABA (they do have one for Speech and OT for ASD) however our insurance is exempt from it due to being self funded (most large companies are self funded). Not trying to be a downer but I've been really dismayed at the lack of resources for my son since he was diagnosed a year and a half ago. He does do some ABA but we pay entirely out of pocket for it and I'm not sure how much longer we'll be able to keep it up.
  11. I would completely pull the sugar. We just did for our ASD son and it is hard but I think it's necessary. I did catch him yesterday with a cookie another child had brought home from an activity. He managed to get it off the fridge and I found him hiding in the coat closet with it. Keeping just a little around doesn't work because he always manages to find it. It has also made me give up sugar which I really needed to do anyway. It not only affects my son's behavior but he has severe yeast issues and has been on antifungal meds for a year almost continuously. He has lots of gastro problems and from what I've been reading sugar is horrible for the gut. We've done other diet modifications but I really dragged my feet on the sugar which I'm finding to be the hardest one to give up. I will use dates as sweetener in some things which don't seem to get the bad behavior that sugar and corn syrup do. I do use some stevia. I made some popsicles last week with homemade yogurt (very small amount of sweetener) and fresh squeezed juice that were a hit. I'm trying to find other treats like that so we don't feel deprived. We also have a vitamix blender and frozen bananas blended with a bit of frozen fruit and water or milk made a nice ice cream substitute. I'm not sure what we are going to do for school treats and that kind of thing yet. My son attends a special ed class which is on break right now but he goes back in July and they usually feed the kids things like animal crackers for snack. That is going to be hard when he's around kids eating things he can't have. For other events we tend not to take ds out much because his behavior is so bad. Today for example 2 of my girls have a play performance and then we are going to the cast party which will likely have sugary treats. Ds is staying home with dh who went to the play last night. I have made cupcakes once that were sweetened with dates and I've thought I should make a batch to freeze so I could grab one if we are going places where there would be treats.
  12. I would go observe the class where he would go. That would give you a better idea if it is one that you'd be comfortable with. There are some really good programs and some I would not want my child in. We've looked at 4 different ones in our county. Three of them I liked but one was a definite no for us. My 4 yo attends a 2.5 hour program and has since he turned 3. There were no school based options for him before that but I probably would have considered it. I get so much done when he is gone. He also does like going. He's the type of child that has to have someone working with him all the time or he just zones. I know the teachers in his class try to engage him as much as possible so overall we've been happy with doing it. My son gets bus service for the program too which is very nice. I love not having to take him and pick him up. I have a teen that can babysit so I don't generally have to take all my other kids for drop offs anymore but I do like not having to out. Before the school option we had a SLP come to our house twice a month for 30 minutes each time. We found the school option more effective than that but my son has always gone everyday not just twice a week. Initially though I would have preferred that since everyday was a little much for him initially but now he's quite used to it.
  13. Try not to be too hard on yourself. I know in hindsight I should have started the process with ds about a year before I actually did. I kept telling myself he was a late talker like his brother. I wouldn't necessarily assume you need a diagnosis at least for school services. My son gets the exact same services through our school district as he did without an ASD diagnosis. All services are based on current testing (anything over 2 years isn't generally looked at) and demonstrated need.
  14. If you have room indoors for a swing all of my children love this one but especially my little guy with ASD. He's a huge sensory seeker. The net helps provide deep pressure. It goes to 200 pounds so it's good even for bigger kids. My 14 yo will go on it and she's the size of an adult. This really helps calm my son down and help him focus. He uses it for breaks with his therapist that works with him at our house. http://southpawenterprises.com/pc_product_detail.asp?key=C6B1E055B8A44B698D5C18210BA2660F
  15. My biggest pet peeve comment so far is people that compare Autism to late talking. It seems like everyone knows of a family member or friend that didn't talk at all until the age of 3-4. I don't think they understand that while lack of speech is a huge issue for ds he has so many other things going on. He does not engage in nonverbal communication either like eye contact, head nodding, and gesturing. I think it is generally said like they assume that my son will just wake up and start talking in sentences one day. He does try to talk but it comes out all garbled and no one can understand him. I sure wouldn't try to talk much either if I were him. While we may be able to get functional speech from him it is going to take hundreds if not thousands of hours of therapy to get there.
  16. My oldest dd has issues with sensory processing but no other issues aside from dyslexia. Most of them are not very noticeable now that she's older although she still can't stand wearing jeans but it's due to this kind of stuff that we were never able to get any coverage for therapy for her. She did do therapy but it was 100% our expense and it did make a big difference for her. This seems like more reason for insurance companies to deny therapy to children who may very likely benefit from it. My little guy with ASD currently does OT and it seems to help a fair amount. He had a lot more meltdowns before he started and used to cover his ears much more. It has not all gone away from therapy but it does help.
  17. It might but I'm not sure. DMG helps shift from the short route around the methylation cycle to the long route. The long route needs sufficient B12 and lithium. My son is very low in both. We initially saw improvements with DMG but they went away and Dr. Yasko told us it was likely because we didn't have sufficient long route support in place before adding DMG. We're working on that now and then will add back DMG. Whether or not your child can tolerate methyl donors is based on their COMT and VDR Taq status. My son is COMT -/- and VDR Taq +/+ and can tolerate lots of methyl donors. COMT +/+ would be the least tolerant of methyl donors. COMT +/- can tolerate more than someone that is +/+. Even if your +/+ that doesn't mean you need to avoid all methyl donors just limit them. You might need to be a member on Yasko's forums to view this but it lists her supplement recommendations for each mutation. http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=14153 Yasko recommends avoiding as much glutamate as possible. She does sell a product called GABA Calm which contains both GABA and glycine. If high glutamate the glycine will pair up with it but if GABA is higher it will pair with the GABA. She recommends waiting to use it until glutamate/GABA ratio is in better balance.
  18. My 4 yo has an Autism diagnosis. He was diagnosed just after turning 3. He's lower functioning and has almost no verbal ability beyond some labeling. When he was first diagnosed we were led to believe he was moderate but he's just gotten worse over time. His language is worse today than it was 2 years ago. He attends public school because his needs are so great I just cannot meet them with having other children I'm homeschooling. He really requires one on one support. He's currently in a mod/high functioning class and they are trying to move him to a severe classroom. It has 1 teacher, 5 assistants, a SLP, and OT for 8 children.
  19. I'm really glad we ran all 8 labs at once. I had a hard time with the price initially but we got so much info from it. I was going to get a new sewing machine with our tax refund which I've wanted for a long time. I gave that up so we could get the comprehensive program review for ds. I think it is hard for DANs because they see a kid maybe once a month for 30 minutes and in that time they are quickly trying to go over everything and answer questions. I think a lot with our DAN is she never has spent much time really reviewing his labs and has her list of things she just recommends to everyone (she has a son with ASD she considers recovered so I think they are generally things that worked for him). The CPR review is not a phone consult or anything so the doctor can solely concentrate on reviewing labs plus there are 8 labs all at once to review to get a better picture than just 1-2. It all comes in writing about a week after the date (ours came the next day but was told that is unusual). With all the detail on it I think it took at least 2-3 hours to do. It does recommend a huge number of Yasko specific supps though so with doing a CPR and implementing her recommendations you will likely have to buy a lot of supps from her. I think she likely makes more off the supps than the reviews. My son doesn't have ACAT and I've never suspected oxalate issues with him. I know that is the one mutation I've seen mentioned tied to oxalates. ACAT is also tied to more severe gut issues. The one I was so sure he had was the MTHFR A1298C based off previous labs and he does have it.
  20. With the genetic test she does not directly comment on it. The results come on a CD-rom and there is a suggested list of supplements for your mutations. It is basically the same from the general list on her message board but it only lists the supplements for your specific genetics. I think you can take that and do a lot yourself from reading her books and message board. My son has SHMT so I already knew we'd need to address that first if he had it. He doesn't have ACAT so we'll skip that one. He has CBS so we'll need to address that and then we can go to the 2nd priority mutations. This is the sample of what you get. My son's looked almost identical just with his mutations. http://www.holisticheal.com/media/downloads/john-doe-mpa-sample.pdf At the same time we did the genetics we did the comprehensive panel review. It is 8 tests run at the same time and Amy Yasko comments directly on them. It was because of our tax refund I was able to do it at all. It was a big expense for us. I just felt like my son wasn't improving and the DAN we were using wasn't spending much time actually looking at the labs that we would bring in. I do probably need a new DAN but I knew there was more going on with my son that I couldn't figure out. Amy Yasko figured out he has Helicobacter Pylori. I sent in several old labs with the review and she said based on old labs it looked like he'd had it a long time even though it just now showed on a GI function test. It really explains so much about my son. Why he didn't follow a typical ASD progression and why he's seemed to slowly get worse the last 2 years. We are starting treating for that in a couple weeks. I'm going to use Yasko's recommendations but I need to get a few basic supps on board before we get started. My son constantly tested low arginine with our DAN and she always said it wasn't anything to worry about it. After watching Amy Yasko's presentation on H. Pylori she talks about how the H. Pylori takes the arginine. It should have been a red flag that was totally missed by our DAN. My son's lithium was also very low (also missed by our DAN and we had done testing for that). I started that this week (very low and slow) and it seems to be helping a bit. Lithium is needed for B12 transport. We also did months of B12 shots and we now know he was getting the wrong kind of folate for his genetics. We started the shots again last night. I feel like we have some ideas on how to help our son now where before I was feeling like there wasn't much else we could try. We got everything 2 weeks ago so it's a little early to see if what she recommended is going to make a big difference. My poor son has probably been in pain with the H. Pylori (it causes stomach ulcers) but because he isn't able to tell me things he has to suffer. He can speak but it's mostly echolalia and some single word requests. He has self selected to just a few foods right now I knew something was wrong but trying to see traditional doctors got no help at all. I kept hearing how it's normal for ASD kids to self select to just a few foods. I'm using quite a few of Yasko's supplements right now. It is pretty pricey though I'm not what all we'll be able to continue with long term. We're using her SHMT supports which you can't really buy anywhere else. I also like the MTHFR caps. My son has been on those awhile. I'm planning to add the BHMT caps because my son has 3 BHMT mutations (+/+ on all 3). He is COMT -/- and VDR Taq +/+ so we know he can take lots of methyl donors. The CBS mutations looks like one of the harder ones to deal with and he's +/+ for C699T the strongest CBS mutation. I know in her book she says that CBS mutations are a significant challenge to treating Autism. CBS causes high ammonia and taurine levels. Thanks to our DAN I'd had ds on Taurine for over a year. Exactly what he already has too much of. We've also supplemented with Cysteine, high sulfur supps like DMSA, high dose B6/P5P, high protein diet. All were not good for his CBS mutation. I wish we'd done the test a long time ago.
  21. Misty, Have you done Amy Yasko's genetic test on any of your kids? We just got my son's back a couple weeks ago. I'm just starting with some supplements for his mutations but it's a little early so see if it is doing much yet. It's so interesting how different kids are. My son has the strongest CBS upregulation which is going to be a big issue I think. It explains why he never did good on the high B6 or P5P and why sulfer supps didn't seem to work for him. He's also got SHMT which is considered first priority so we just added supplements for that. I just got a new methyl B12 shot prescription filled for ds since according to his genetic test he can handle lots of methyl donors. We tried them for several months but now that I know he has a couple genetic mutations and needs the 5-MTHF we're going to try them again. He also tested very low on labs for lithium so we just started low dose of that. We will have to monitor that closely with lab levels. Lithium helps with B12 transport. We're supposed to add CoQ10 from ds's latest labs. He's been on it before and I didn't see much but hopefully now that we have some other supplements in place it will help. I've got several things to add though and I need to space them out a little bit. I try to spread out adding new things as much as I can.
  22. We visited for the day to see how my son would do. I imagine this isn't possible now because they are done for the year (our campus is anyway). That would really give you a better idea if it would work for your dd. The classes are small (around 8 students) and seem much smaller and intimate than a school classroom setting. In my case my NT children enjoyed it immensely. My 7 yo in particular loved it and has asked numerous times when he can go weekly. My 4 yo son is the one with Autism and I don't know that he's going to get much out of it. Our director would not even consider letting him stay in the nursery though so I was pretty much in the position of not having the younger children do Foundations or just signing him up and staying with him the whole time. I opted for the latter. He likely would have not done well in the nursery anyway. He had a bit of a hard time with the sitting but otherwise did pretty good. I don't know that he got much out of it but he is pretty much nonverbal (can repeat a few words). He's getting a new talker device this month so that may help with that and we could possibly program some of the memory work into it. My oldest did the Challenge program this year and loved it. I think it is her best year in a long time so next year we had already decided to sign both of the older 2 up for Challenge. Since I was already going over for that and because they are starting with Ancients next year I really wanted to do it with the younger kids. Our director was telling me that she knows of a whole CC campus with special needs kids. She claims that kids with Autism do well with the CC program. I guess we'll see how it goes.
  23. We are never done in May. Truth be told my children do a lot of school work in the summer because we are always "behind". I'm about halfway through our plans for the year. My oldest dd who did CC Challenge is pretty much done aside from Math (which she is half through and she knows she'll be doing it all summer to start Algebra for 9th grade). She's in the best shape of the 4 I'm officially homeschooling. My 6th grader has done a lot of work on her own but we have lots of language arts and science to do this summer. She has a hard time with math and really struggled with division so she'll be doing that all summer. She's finally almost to Epsilon and she'll be in 7th grade this fall so we can't afford to take time off. My twins aren't reading anywhere near as good as they should be so we'll be concentrating on that this summer. We are so busy during the year and this year has been especially bad because of my special needs child's issues. He has numerous therapy appointments and we've gone through 3 IEP meetings with the school district for him. We rarely travel in the summer and when it is hot and yucky out we are at home doing school work. Most of my kids activities don't meet in the summer and they are "bored" so we get a lot done.
  24. Has anyone used the program with a 7th grader? I know it is recommended for grades 8-12. I ordered through Homeschool Buyer's Co-op and haven't received it yet. I bought it for my 14 yo that will be in 9th grade in the fall but I also purchased an extra workbook for my younger dd since it was a good price thinking I could hold onto it a year or two if necessary. She'll be in 7th grade and loves to write. She's a much better writer than my 14 yo. She is in a creative writing class right now and has cranked out over 40 pages in the past couple months since the class started. She's doing another creative writing class in the fall though so that may be too much creative writing even for her. She really wants to do the Sci Fi novel which comes after OYAN. I ordered the DVD sample from One Year Adventure Novel's site and that really helped me get a better idea of how the program worked.
  25. We tried it for awhile and I found it very challenging. We are not doing it currently but I imagine it would be even more difficult with family that isn't supportive living nearby. When we did it I felt like I was in the kitchen all the time. I may try it again this summer when I have more time. I just got the book Eat Like a Dinosaur which has mostly SCD recipes in it. It has a story for kids at the front talking about why they eat differently. The book is actually Paleo but most everything I've seen in it looks SCD legal (I think it might have maple syrup in some recipes- I think you could sub honey for SCD) It might be a good book to get the kids excited about SCD foods. http://www.amazon.com/Eat-Like-Dinosaur-Guidebook-Gluten-free/dp/1936608871/ref=sr_1_1?ie=UTF8&qid=1334162025&sr=8-1
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