Sunday, May 26, 2002
Hi All - sorry it's been a while since I've been online. We found a few weeks ago that my 3 year old daughter was going to need surgery - which took place on Friday - so now that that is over I feel like I can function again!
Carol and Patrizia - I will happily share my thoguhts and experience with the GFCF ( gluten free/ Casein free) diet however... I will tell you that to our benefit was that my son is not at all a pciky eater. He has always loved his fruits and veggies and as always been willing to try new foods so that made the transition for us much easier.
The basic premise of the diet is that a large percentage of autistic kids have what is called a "leaky gut". Basically there is a breakdown in the lining of the gut and some foods leak through before being broken down. If casein and gluten ( the proteins found in dairy and grains respectively) are not properly broken down they enter the bloodstream and act as an opiate to the brain. Basically, these foods are drugging our kids! Also, they claim that autistic kids will pretty much self limit their diets to include - sometimes exclusively - foods that contain these proteins because of the opiate feeling they produce. Now, while my son had always been a good and varied eater, he was a huge milk drinker - upwards of a half gallon or better each day. So, when he was diagnosed and frantically searching for information I stumbled across this diet. Because I willing to try anything - and the fact that he HAD to have so much milk each day to function - mu husband and I decided to go cold turkey and see what happened.
Now, we are fortunate to have a pediatrician in our group who has twins - one of whom is autistic. Due to that she went part time in the practice and devotes her time to both her duaghters and as an advoacte for autism research and services in our state (CT). She told me that she had heard of the diet and had heard of tremendous success. She also said not to get my hopes up for any sort of miracle because normally the children that are helped the most are the ones who are most autistic. Since AS is such a high functioning form of autism she said that theoretically we probably wouldn't see much of a difference. She did however say that she never knew of anyone with AS who tried the diet and anything that might help is worth a shot. Her closing comment was that it takes a few weeks for all the effects of the proteins to leave the system, so we should not expect to see any difference in about the first 2 weeks. And if we say no difference after 4 weeks we could forget the whole thing. Well we went forward with the diet - and it took 4 MONTHS before we saw any changes. I had read about a woman who didn't see any changes for 2 years - but she stuck with it and it paid off. I couldn't let go of the idea that I was lead to this diet for a reason and I decided that once all the changes had been made to his diet ( and our lifestyle - more on that to come) that I was not going to give up after a mere 4 weeks. Thanks God I didn't because the changes is this child have been incredible!
Now, before you start this diet you need to prepare yourself for a few things. First, some people have found that only one of the proteins is the offender - we eliminated all and then tested a little of both to see what worked for us. AS it turns out, my son can tolerate a VERY small amount of lactaid free milk each day - just enough to coat his corn flakes in the morning. Any amount over that - or if he gets it every day - and we see all the "symptoms" return. Second, it is almost impossible to eat out - other than in Disney World we have never found a restaraunt that would or could accomodate his needs. ( I should mention that in addition to the removal of gluten and casein we also had to remove bananas as they seem to produce the same reaction - the pediatriacin told me that this is a very common thing to find that some other not related food will cause a similar reaction and will need to be removed from the diet. AND, he is also allergic to peanuts, tree nuts, soy and teh skins of fruits!!). Third, it takes a LOT of time to prepard gluten free foods that taste good ( but it is well worth the time investmnet. We have freinds who joke that I live that Little House on the Prairie because I am always cooking things from scratch..). And lastly, the gluten free foods are VERY high priced - agian a small price to pay if it truly helps your child!
Our son was having huge socail issues - he badically couldn't function in the classroom setting. He was in a Catholic school that refused to even try to help and basically kicked him out last April - by far one of the best things to ever happen to us. We moved him into our local public school in April - at about the same time that the diet started kicking in - and the combination of the diet and the right environment have worked wonders for him. Before we started teh diet , in addition to falling apart in social settings, his speech was almost toally echolalic - he basically couldn't talk if he wasn't repeating a line or a scene from a book or a video. We estimate that about 85% of his speech was echolalic at the time - and becoming increasingly worse. He needed a strong adherence to routine, he absolutley could not accept praise in any form ( if you gave his something he would throw it at you - if you said good job he would spit at you etc..) , he could not sit still while watching tv - he had to be up and repeating in both action and word everything he saw ( and I do mean everything if it was a video about trucks he would pretend to be a truck). The first thing we noticed at about the 4 week mark of the diet was that he could sit still in one place on the couch and watch a video - start to finish - without acting out anything he saw. That was enought progress to fuel me forward!!
Today, if he has any echolalic speech ever we think it's a bad day! He is much calmer overall , has made friends in school ( no one he asks to play with outside of school but kids he talks about regulary and the teacher tells us he is part of a group of kids who play together in free time), interacts with kids on playgorunds and in museums etc.., can wait patiently for his turn with things and can play beautifully with his sister. Is it perfect - no - and given that he is an AS kid I don't expect it ever will be - he still likes things to follow a routine ( like he had a time out in school on Friday - which I knew would be coming because his whole day was out of whack and he was nervous about his sister being in the hospital!). But, a time out is so rare now that it's a blessing. He is totally mainstreamed and receiving no special services. I know as they grow that new problemsa can creep up - and there is no doubt that he is not as socially adept as my daughter who is 3 1/2 years younger. Trust me we do not look at this as any sort of a cure. But anyone and everyone who knew this child a year and a half ago continually comments on the improvements in his overall behavior and social awareness. And , here's teh clincher. if he gets even a trace amount og gluten, or if we exceed the tiny amoutn of allowable casie, he totally reverts back to his old self - all the echolalia returns and the tantrums and the whole nine yards. My husband, who was a huge skpetic, is the biggest advocate now because you cannot help but to see the differnece a tiny bit of gluten makes. And, one other note, a trace amount of gluten can cause the "symptoms" tp reappear for upwards of a week!! Basically the brain gets drugged and it needs to come back off the effects.
Ok - that' my story in a nutshell. I can sum up with two points - it's definitely not easy to do and for us, and the huge positive differnece it has made, it it worth all the time and effort and inconvenience.
For more info and stories you can check out the GFCF diet website at GFCFdiet.com. And if you are really ready to tri this let me know and I will be happy to share all that I have learned about gluten free products and the best tasting things and lists I have from manufacturesr re: ingredients etc.. My only last bit of advice - given that you both ahve pciky eaters and this is a huge dietary change is twofold - One, I would check with your doc to make sure your child will be getting enough nutritionally. My son was such a big veggie and fruit eater and both of my kids hate sugary snacks so there was a good nutritional balance for us. And, you may consider starting this over the summer when you won't need to deal with school too... it's very hard with "food" events like birthday parties and end of teh year celebrations. It might be easier to institute over the summer and by September you, and your child, will be in the GFCF groove! We know it makes our son feel better to avoid these proteins because he has become a food ingredient hound - he will not eat a thing without having people check to see if it contains gluten or casein!
Alright, I hope I haven't rambled too long. Please let me know if I can answer any ofher quetions you might have. Oh, and also keep in mind that gluten is in everyhting - from food to soap to toothpast to medicine....- so you will need to start looking at everything and anything your child uses and replace products with GFCF ones if you start this diet.
Good luck to everyone - I hope I have helped in some small way.
Tuesday, May 21, 2002
Hello (again...I just started this and then I tried to make the writing area bigger and all I had written disappeared. Sorry, if it happens sorry for the duplication : D )
In reading Jonathon and Jared sound like they could very well be the same person. They have so many like characteristics. But like you said, if they were together in the same room, the would be so different, while being the same.
"Almost Asperger" That's sort of funny. I thought AS and other PDD were realitve (is that the word I'm looking for?) anyway. It's really difficult at first, when you hear things like that from the professionals you look to for answers. Jared's DS's have been both AS and HFA and I imagine if I had taken him to a third Dr. I would have gotten a third DS.
I went through the same ordeal with the guilt trip about the baby sitter. I had Jared at three different ones before he was two years old. Not only that my husband and I both were quite the beer drinkers when Jared was conceived. We will probably always keep that in our minds as the cause of it.
I think that's great that he can receive therapy as he needs it. If our school system offers it, it's a deep dark secret, like so much of what the Special Education Department in our area has able to offer.
I think that once Jared is "in the SE system" for a time, it will be easier for him and I both. I am not quite sure of what I should be asking for on his behalf, and he still doesn't or can't relay what he needs most of the time.
Kim, I am also interested hearing about the special diet. I too have read a great deal about it as well and I have heard only about people who have had good luck with it. I don't know if this means, it's truley a thing that works, or if I just haven't read any reports that are contrary. I sent out for a catalog that carries glutenfree products. However, my issue is this, how the heck do you get an already picky eater to try something new, or even more, how do you totally switch his diet? Right now, he will only eat, cheese, milk, bacon, yogurt. No veggies or fruit whatsoever. My sister and I discuss this regularly. She posed the question to me as to whether he would really let himself starve to death before trying anything new. I know that he can go a couple of days, but I don't really like to have him not eat for that long and I don't know how long I should "test" his willpower in this area.
Well, enough of my rambling. I just want to say that I surely welcome any input you all can offer. Katie, I am really curious to know what sort of problems develop in adolescents with an Aspie. I can see with Jared behavioral issues are going to be my next conquest. Thanks ya all! Take Care! Carol
Now more than ever, I'm glad for having started this weblog. I'm glad that my mom also shared her experiences with Jonathan and I hope that through my feeble attampt at creating some sort of AS community not only she, but all of you can maybe find answers to your questions. I plan on signing up to search engines like google and yahoo so that other AS parents can find this weblog and share their experiences as well. The worst thing for a parent (i imagine) is to feel like you're alone. To feel like you have no one to talk to who will understand what your going through... that's what pushed me to do this. I hope for my mom, and for the other parents, that you all are able to express youselves freely here and to feel understood. My objective is to help. I think that through the expression of personal experience, others can benefit. Like you all have helped me to better understand my brother, I hope that this site can help each of you better understand each of your children as well.
Ralph Waldo Emerson once said "It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself."
I look forward to hearing from all of you soon!
Monday, May 20, 2002
Hello everyone! My name is Patrizia and I'm Georgia's mother. I have a 7 years old son (among others), who has been diagnosed recently as "almost Asperger". I explain:
since he was 3 years old, we were told by the psycologist at the nursery school he was attending, that he seemed "different" and we needed to have him seen by some specialist. Of course the first thing I did was fall into denial and thought that maybe I should be changing school, thinking to myself " how dare they can say something like this about my sweet little boy Jonathan!", and then later on, changed that to a guilt trip as if I had done something wrong along the way. "Maybe I should have taken care of him better or shouldn't have left him with the baby sitter too long". All kinds of thought were crossing my mind, until, I realized that maybe I should give myself and the school the benefit of the doubt and investigate it further. He was seen by specialists sent by the Board of Education and I took a private professional to help me understand were I was standing with Jonathan and how "different" he really was from other children his age. That was about 3 years ago. I wasn't told about AS and did not even hear about it until I applied last year to some schools in the city ( New York) who dealt with special education, and received back a brochure from one particular school that among PDD and ADHD dealt with AS as well. On the brochure was a list of "symptoms" and behaviours for each particular case and once I read the Asperger, a light went on in my head. I knew that I had finally found what I was looking for! Too many people, by then, had told me that Jon didn't have a specific disorder, but a "dash" of autism and a "dash" of PDD, but not entirely, until I had read that brochure. I then called the school and asked them if they had a name of a specialist who could diagnose an AS case. So there I went and was told that Jon could be an Aspie kid. He's been going for the last two years to a school within a Montessori environment who deals with special education. He's been receiving daily speech, OT and play therapy and has progressed amazingly. He will be changing school in September and hopefully will gain more strenght and understanding there. He was tested lately again and I was told that even though he seemed an Aspie he could also be a PDD or even a high functioning autistic. I'm confused! He doen's seem to have the "intricate language" of AS and even though he has this obsession with trains, it's not as "obsessive" as AS. He seems also more social then Aspies. The psycologist who tested Jon, told me that if I were to sit with twenty Aspies in a classroom, they would all be different from one another but, then again, all the same. So is my child an Aspie? I don't know what to think anymore. I've read that some of you have the same problem. I can see how my son is "different" and requires a lot of help, but I'm hoping that not been able to "label" him, won't hurt him with the help he's been getting from the school so far. He is progressing, but still is not at age appropriate level. He seems very immature and "gazes" at some point in space or talks to himself (or at someone not present) many times during the day. He has trouble making eye contact and seems so fragile and vulnerable. He happens to be also a very picky eater and, therefore, is kind of skinny and small for his age. I never stop giving up hope and hope that one day, Jon will "fit" comfortably in our society.
Katie, my sister in law teaches Hebrew once a week and told me that she has an Aspberger student who's 20 years old in the class. I'll let you know how he's behaving, so that you might know what to look for in the near future.
Carol, it is very important for Jared to be in the right school and receive the proper services. My Jonathan doesn't seem to have as many tantrums anymore and seems more comfortable being with others and I can only say that it's mainly because of the effort that the school made. There is help out there you just have to find it. Good luck!
Kim, I would like very much to hear more about the special diet you put your child on. One never knows. I would do anything to make it better.
On a light note, I took Jonathan yesterday ice skating, and was surprised at how much he loved it. Didn't even know he could be so athletic! Another sport I was told to pursue is martial art. Anyone has a comment on that? Thank for reading me and look forward to read you soon.
Thursday, May 16, 2002
Hi Georgia, all,
This is Katie, mother of Emily, who was diagnosed last year with AS. She is 14, and it's sure not getting any easier. Well, maybe easier in one small way, and that is that now I can discuss her and tell people WHY she is the way she is! I read someone else's post; she said her child's symptoms seem to be getting worse with age. That is true of Emily. What I can look back on now as 'minor' (minor??) problems compared to now, seem almost trivial in light of her present difficulties. Like the other mother, Emily's father and i had always hoped that she would 'outgrow' whatever behavior she was exhibiting at the time, or that eventually something would sink in and we could get through to her. That has not happened. Sometimes i feel like we're stuck in that movie, 'Groundhog Day'. as so many days seem to be repeats of the day before, and every day we start all over again. Does anyone else have a teen with AS? I'd sure like to hear about him/her. Emily is doing better socially, but as far as 'life skills', I am beginning to lose hope. What will become of this child? How will she ever be able to function on her own? For instance, she is adamant that when she turns 15 she be allowed to get her learner's permit. The thought of Emily behind the wheel of a car terrifies me! Oh well. For a first post, i guess i got kinda long-winded. Thanks for listening to my rambling, and thanks, Georgia, for inviting me.
Monday, May 13, 2002
Hi Georgia. Good job on the site, it looks great! I will be writing about Jonathan soon, so that, maybe, someone will benefit from it and I will too. Kim and Carol, Happy Mother's Day! Have a lot to talk about my son Jonathan (Georgia's brother), and I will post it tomorrow. I'm curious to get a feedback from you.
Thanks for writing.
Hello and a belated Happy Mother's Day to all! I'm sorry I didv't have a chance to check in earlier but I haven't had a chance to get hold a computer in about two weeks. I'm proud to say that I received an A- on the AS reseaarch you all hepled me with! And my professor said that once se helps me make a few corrections I should try to publish it in some kind of medical journal or something. I figure it can't hurt. Carol- I am now beginning my 5th year in Lugano, Switzerland. It's a small town about 70 kilometers from Milan and has something like 30,000 inhabitants. It looks like a postcard. There are lots of mountains surrounding a big lake. It's nice for the first week. Needless to say, however, that the change from Manhattan to rural Lugano was tremendous. In the Spring session of 2000 I was already planning to go back and finish my studies in NY... or maybe somewhere else in the states. That's, however, until I met my boyfriend. We've been living together now for a little bit over two and a half years and even though I'm not very fond of the life here, I'm staying until he graduates so that then we can move to NY together. Anyway- yesterday was Jonathan's borthday, and I have to say that even though he seemed to be more interested in looking out the window than talking to me on the phone, his verbal skills are beginning to improve. He got a bunch of presents... most of which you have to build (he loves that kind of stuff). Well- I have to run now.. but I hope to hear from all of you again soon! I gave my mom the adress today so I hope you all can meet her too and help her batter understand Jon. As for your son Carol, I think the best thing to do about your son not having many friends is to let things run their course. Jon also tends to be a "lone ranger", but I guess thats just part of being so wrapped up in their own world. AS kids like to have things their way, and if other kids can't abide to their rules it just doesn't work. I'm sure that with time your son will find his own little circle of friends. The important thing is to make him feel special and loved at home so that maybe you can comensate for the attention he's not getting from the other children at school.
Maybe I'm wrong... but I hope my advice can be of some help. I realize in the end that I'm the only woman not mother, so maybe from a maternal point of view things are more complicated.
I'll chack back again soon...
Sunday, May 12, 2002
Happy Mother's Day to All!
Thursday, May 02, 2002
I haven't been here for a while, but am glad I came back. Georgia!!!! You are in Switzerland???? Oh my gosh, for some reason I thought you were in Michigan or Indiana or something like that here in the states.
Your Jonathan sounds just like my Jared. Same thing over and over except his "interest dujour" is fire trucks and all related paraphanalia.
Kim, I too had to change Jared from a small country school where he was punished for his behavior. The only funny thing was that he would get dention which he dearly loved. It took only a little while for him to adjust to the new school. It was much easier on him since he was in a special ed. room and he could take breaks to stay on task and such. Two major problems developed though. The first, is that the Volunteer Fire department is directly across the street and the siren absolutley sets Jared into a frenzy. He cannot take the noise, or pitch or whatever it is. The teachers have to cover his ears and take him to a room that has no outside walls, which luckily is the teachers lounge and has a couple of snack machines it it ;D The other problem is serious as well. This year, is second year in he has a full time Autism Mentor with him and therefore he is a regular classroom setting for the full day. He is having a really hard time adjusting to this. However, he is increasing in the volume of work he produces little by little.
The really sad thing is though is that he doesn't really have any friends at school. I just don't know what to do about this. He did for awhile have a friend who helped him but that didn't last and the little girl he so dearly loves, "is mean at me" he says. It breaks my heart.
I must go, all the troops have returned from the outdoor adventure they have been on. I must mention though, look at the new issue of the Time Magazine. It's a definate must see. It's on line also, that's where I read it. Take Care, I will check back sooner now that I know how to get back on here.