Sydsmom

Kim, I haven't tried those but our doctor just suggested a zinc lotion because Syd is taking a zinc supp and still testing low in zinc. We are going to try the lotion.

Thanks so much for posting. I pray that you can be a light to the other parents and they don't stay in that place of depression. I went there at the beginning for about a day. It would've been an easy place to stay as it's all so overwhelming but I'm glad I moved ahead. I still take things slowly, in fact I just today ordered Taurine and wondered, "What took so long for it to click with me?". But I am moving forward - baby steps and I'm seeing results mostly in my daughter's moods and behaviors. I'm hoping the Taurine helps reduce her tics. Thanks again for posting!!

Thanks so much Andy. I appreciate your wisdom and experience. Thanks again, Lisa

What about EDTA pills? We were thinking of having my daughter take those for a few months to start getting rid of the other metals then using DMPS lotion to take out the mercury. My husbands aunt who is very informed and involved in autism said her grandson is having success with the EDTA pills. But after reading Andy's reply, I'm nervous. It's all so overwhelming that I think that's why I sometimes don't do anything. My daughter has been on supplements for 10 months and her copper levels have come down to middle range. Her tics and behaviors aren't totally out of hand but we worried about what will happen when full blown teen hormones set in. (She's just turning 12) We don't use credit cards so everything we do is cash only and we want to heal my daughter but we want to see which method we can best afford. Thanks for any advice on this matter. Lisa

Kim, The same thing happend to me at Brain Talk and I did try another email address. So, I just go and peek in. I guess it wasn't anything I did incorrectly since you can sign on either. Thanks for all your info. Lisa

My aunt sent this to me and personally - it spoke VOLUMES to me. So much pertains to how I see my daughter react and how I react to her. Just wanted to share. 10 Things The Student with Autism Wishes You Knew (...and it makes sense for other kids too!) By Ellen Notbohm Author's note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. "Just what my daughter would say if she could," said one mother. "How I wish I had read this five years ago. It took my husband and I such a long time to 'learn' these things," said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child's voice, a voice not heard often enough. There is great need - and I hope, great willingness - to understand the world as special needs children experience it. So the voice of our child returns now to tell us what children with autism wish their teachers knew. 1. Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow. Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from "bad" behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don't understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge. 2. Never assume anything. Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can't retrieve it today. Ask yourself: Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids. Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished. 3. Look for sensory issues first. A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don't understand what you are saying because there are too many noises "in between" - that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding. Ask the school occupational therapist for sensory-friendly ideas for the classroom. It's actually good for all kids, not just me. 4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly. 5. Tell me what you want me to do in the positive rather than the imperative. "You left a mess by the sink!" is merely a statement of fact to me. I'm not able to infer that what you really mean is "Please rinse out your paint cup and put the paper towels in the trash." Don't make me guess or have to figure out what I should do. 6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I'd be better off helping the school secretary put together the newsletter. 7. Help me transition between activities. It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes - and build a few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently. 8. Don't make a bad situation worse. I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis: _ Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words. _ Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior. _ Making unsubstantiated accusations _ Invoking a double standard _ Comparing me to a sibling or other student _ Bringing up previous or unrelated events _ Lumping me into a general category ("kids like you are all the same") 9. Criticize gently. Be honest - how good are you at accepting "constructive" criticism? The maturity and self-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you. Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you. Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me. Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response. Practice or role-play - show me-a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away. It helps me if you yourself are modeling proper behavior for responding to criticism. 10. Offer real choices - and only real choices. Don't offer me a choice or ask a "Do you want...?" question unless are willing to accept no for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all. You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life. Whenever possible, offer a choice within a 'have-to'. Rather than saying: "Write your name and the date on the top of the page," say: "Would you like to write your name first, or would you like to write the date first?" or "Which would you like to write first, letters or numbers?" Follow by showing me: "See how Jason is writing his name on his paper?" Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can't. When this happens, I won't get as frustrated if I understand why: "I can't give you a choice in this situation because it is dangerous. You might get hurt." "I can't give you that choice because it would be bad for Danny" (have negative effect on another child). "I give you lots of choices but this time it needs to be an adult choice." The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I "can do it." Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I've left your classroom. Ellen Notbohm is author of the new book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media's Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine's 2006 Teacher's Choice Award. She can be reached at ellen@thirdvariation.com

Chemar, I was just praying this morning asking for some direction in this area and saw this post!!! Thank you so much - you were an answer to prayer - and a quick one at that. I've already checked it out and printed some info for my daughter to read. As a 12 year old she sometimes listens to what others say over me. To be expected. We've been doing supplements for 10 months and she had an RBC minerals blood test taken yesterday. Anxious to see what the results will be. Her youth group leader told me this morning that he has seen positive changes in her in the last 6 months. She's less anxious and jumpy and he hardly notices her tics. It could be he's used to her/them but it was nice feedback. Now if we can get a handle on school we'll be doing ok. Thanks again for posting the link!! Lisa

Thanks Kim, I get where you're coming from - I feel the same. I check out the autism sites to be informed. My aunt is really involved and shares a lot and I run into people who either have an autistic child or know someone so I just share what I read works and hope they give it a try. Lots aren't open to it but I'm hoping that's changing with books like Evidence of harm and all of those great people involved. Ok - thanks for clearing things up for me!! Lisa

Kim What do all the initials stand for? I know they are certain disorders- but like PDD and NT - what do those mean? I check out an autism site and sometimes I'm totally lost with all the lingo. I'm so out of it Thanks!! Lisa

Thanks Kim!!

Sydnie has had braces since Sept. and I haven't noticed an increase in tics. Still the same. She does have the clear on top but theres still metal in her mouth. Her teeth were so bad and she was getting made fun of for both her teeth and her tics that we went ahead with the braces once all of her adult teeth were in. Her big triggers are chlorine and crowds. Last night she came to the adult church service with me and the music was loud and lots of people and she started to tic bad and meltdown. Kim - what's the autism site you go to? Thanks. Lisa

Andy, Congratulations on the successes for your son. Thanks so much for sharing what has worked. I'm all about gleaning wisdom from those who have walked before me. Thanks again. Lisa

Chemar and Marie, Thank you so much for your replies. It's the next day and of course I feel better - "His mercies are new every morning." I really appreciate the advice you gave to me. I told my husband last night how much I value this message board. Thanks to all who post what works, what doesn't etc....I don't post often but I'm always "peeking" and gleaning info. Lisa

I have been having some issues with my daughter's Girl Scout leader. Sydnie always forgets things at her meetings and leaves them behind. Sydnie actually forgets everything - she has lost 5 sweatshirts/jackets since Aug. Thankfully we live in So. Ca so it's not too cold and I'm not buying anymore. (she has 1 left) Anyway, yesterday the leader called and told Sydnie she left a poster at the meeting and she is sick and tired of picking up after her. She said she has to be more responsible and remember her things. I agree with the last statement but was unhappy with her approach and tone with Syd. So, I emailed her asking her to please have some consideration with my daughter - she does have a diagnosis from 2 doctors etc... She basically replied and said I have to just treat her normal and not "use" her disability and let Sydnie pout and get her own way. I mentioned she suffered from depression (it IS much better than it used to be but still here along with high anxiety). She said Sydnie has a choice and needs to choose to see the glass half full not half empty. How do you guys handle people who just don't understand and don't even want to understand? I questioned myself all day and have been going back and forth. I know I'm not crazy, I know my daughter just doesn't hit the mark on certain things and no matter what we do - rewards or restrictions - it just doesn't affect her. So how do you handle the outside people? Thanks so much - I know this lady won't be the last so I'd like some advice on how to handle the next one cause I know she/he is around the corner. Lisa

Marie, As I read your post I found myself nodding. My daughter is a totally different girl after a year of dietary changes and supplements. She is HAPPY, interacts and is NICE to her brother. She used to ignore him and if she did pay attention to him she was mean both emotionally and physically. Her grades are going up - we had a bit of a set back at the beginning of this year because of Middle School. But, I feel I have a happy normal daughter. Yes, she still tics though not as bad. A year ago she had like 5 big ones going on at the same time, now there are 2 or 3 small ones that most people probably don't notice. I think she's accepting them now and who she is. All I can say is fight for your kids and stay in the game. It's overwhelming and we still have bad days but the good days far out number the bad days. And lots of PRAYER!!!!! Not just for my daughter but myself too

Thanks Chemar for your response. I googled aqua chi and it claims to pull out toxins and even yeast. We are going to do some treatments after Christmas and see how it goes for Syd.

Hi, Has anyone heard of or done aqua chi treatments? My friend does this and it's a treatment where you put your feet in water and the process (I'm not sure specifics yet) pulls toxins out of the body. She said she has a friend who had mercury poisoning and after 6 treatments felt tremendously better. I was thinking of doing it for my daughter and was wondering if anyone else has heard of it. Thanks. Lisa

Hi, Welcome!! I want to commend you for trying to find out how to help your child. I ignored my daughter's symptons for 5 years - she also started at 5 and it wasn't until she was 10 that I did anything about it. It is soooo overwhelming at first, but trust me and other parents here, it does get better. One day at a time. Did you read Claire's post for newcomers just below? Please do, again you may be overwhelmed but take one step at a time. I took my daughter to a DAN! doctor who does natural therapy. She is on supplements and dietary restrictions and her tics are a little better - it depends on her stress. I was a stressed out working mom who didn't balance very well so the first thing I did was quit my job and God has provided more than I could've imagined. Other more experienced will guide you here, look through old posts and please know that it can get better. My daughter used to talk about wanting to die and go to Heaven - she was soooo depressed and now that depression is mostly gone and she smiles like she did when she was a little toddler. I feel like I have her back!! Goodluck to you!

Momonamission, I love your "name" because that's what we are here - parents on a mission to help our kids! It was exactly a year ago that my daughter was diagnosed and I was refelcting just the other day about our year. It was all so very overwhelming and we sometimes still have our days but overall it's gotten easier. So hang in there and know that each day gets better. What often rings in my head is the phrase "stay in the game". Goodluck to you - your son is lucky to have a mom that has taken her head out of the sand and isn't ignoring the symptons anymore. (I had my head in the sand for years).

Thanks so much for all of your info. I will go back and talk with her math teacher about tests since this is the hardest subject for her. We have eliminated so many foods. All she drinks is water and rice milk. She is allowed a sprite once a week on the weekend. I have noticed a set back since she insisted on eating gluten foods again. If we had started all of this at a younger age it may not be such a fight. I keep praying that she'll choose those foods which she knows are best for her but as she gets older I lose more control. Thanks again for the feedback - EVERY little bit helps!! (She does take a focus pill prescribed by her DAN!)

Hi, I'm so glad this site is back up. I too missed it. I don't post a lot but read it all. I'm looking for some help from those of you who have older children or went through this yourself. My daughter just started middle school and she and I are spinning a little. I have an IEP in place for her and have met with her teachers. She is in the front row of all classes. She is struggling in math. I went over material with her last week and she seemed to grasp it but only got half of the questions right on her test and received an F. She has a major focus problem. What are some things that have helped older children in school? So far all of her teachers seem to be willing to help with whatever I suggest, I just don't know what to suggest to help Syd. Any info. is greatly appreciated. As a side note, she has been taking MB12 shots and her tics reduced a great amount - still had them but not as bad. Well I didn't realize the B12 wasn't good after August and she's still been receiving her shots. Her tics have gotten worse and we felt it was new school, changing classes etc... but now I'm wondering if it was the B12. Her doctor's office said it wouldn't hurt her but the potentcy has worn off. I'm going to order more and will be curious to see if after she's back on if tics reduce again. I'm hoping so. Thanks again for this great resource! Lisa

I'm so thankful we took our daughter to a DAN doctor. Yes she still tics but not as bad. We just started this all in Jan. BUT, her depression has lifted and her OCD and ADD has greatly decreased. She started the last school year with all C's and ended the year with A' and B's. That's a huge praise report!! And she started Middle School this year and is doing extremely well both socially and accademically. The diet changes and supplements were a little overwhelming at first but the whole family is so thankful we've stuck to it. I totally encourage people to check it out. Our other option was to listen to the neurologist who said there was nothing we could do - just deal with it! I wasn't about to do nothing.

P.S. Re: tics - Sydnie's tics are a little less than they were. She used to have 4 or 5 very noticeable ones and now only has 2 - 3 and some (right now) aren't noticeable to people outside the famiy.

Hi, RE: enzymes it's hard for me to say what they've done in and of themselves. The only thing we were doing prior to starting enzymes and other supplements was a diet with very low sugar, no food dyes and tried to stay on GF/CF but not real dilligent. My daughter always complained of stomach aches and was having bad dreams every night. She has neither anymore. The DAN! doctor suggested the supplements to give her which include: Digest Right (enzymes), Learners Edge, - both are by a company called Integrative Therapeutics Inc. I get them from the doctor's office but did some research and found the Digest Right and info. regarding it on http://tsangenterprise.com/digest.htm I was excited when I re-read ingredients in the Learner's Edge that Carnosine is included. She also takes Super Nu Thera multi from Kirkmans, zinc, MB12 shots, calcium, selenium and folic acid. Sydnie is eating gluten now. We are good about no caesin but she has really fought me on the gluten and so I have left it to her for now. It was just too, too much of a fight. She seems to be doing ok, I don't know if her moodiness is attributed to gluten or to pre-teen hormones. She is 11. So, that's my story with enzymes. Things are so much better than they were as of last Oct. I'm going to be starting her on Krill oil soon too. As I said earlier, I'll update on the Krill oil after a while. I hope this helps.

Kim, Sydnie does take enzymes - they come in the form of a pill called Digest Right suggested by our DAN! doctor. Thanks for all of the info you pass on - your time and efforts are very, very much appreciated. I'm going to buy the Krill Oil this weekend and hopefully Syd won't complain too much about taking 6 more pills. I'll let you know if we see any differences - I know it may be a while. School starts in 3 weeks - Middle school so it's all new. Praying she adapts well. She did make a comment the other day about her tics. I told her I may start her on the Krill oil and for some kids it took the tics away and she said, "They're like my old friends mom" It made me think she doesn't resent them as much as I do. It was interesting and a little comforting at the same time. I've asked her if she feels the struggle inside of her head and all the negative things I've read that some with tics face and she said "no". That too was comforting. But, she is a pre-teen and so that was the feeling this week