New here- NT mom of autistic angel

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Hi all, my name is Lainne, proud mother to Kaelyn Grace, who was DXed with PDD-NOS in March of 08 and changed to Autism in November at age 3. We have Kaelyn on the gf/cf diet with much success. I know it isn't for everyone and we are very grateful for the progress she has been able to make with this diet. She also takes an antioxidant, but I am planning on working more antioxidant foods into her diet in place of the supplement. She potty trained herself on the second day with the antioxidant.
We are on waiting lists for speech and OT. Her receptive language skills are great, she just has a very hard time getting the words out. She does try so hard though and her frustration is evident.
*I* am increasingly frustrated with the lack of help or recognition for the need for help for children with Autism. I hope that it's just my area that lacks the resources, but the more vocal I become on sites such as this- I find that sadly, negligence of services is widespread.
I am not on either side of the fence of "cure" (HATE that word) and neurodiversity. Especially since I was only recently introduced to the neurodiversity side of things. I find myself straddling the fence... unwilling to accept the struggles I see her face daily yet more than happy to accept my daughter as the beautiful child that she is. The Biomedical that we do, we do only to help her with her struggles. I do not wish for a child without Autism, in fact, I feel blessed that I was chosen as her mother. I consider it an honor and in Autism advocacy, I have found my purpose in life. Being a voice in all this, sharing what I learn with others, helping families find the path that suits and works for them.
When Kaelyn was first diagnosed, I latched onto DAN! with a vengeance. Only recently have I begun to loosen my grip on this and begin to forge our own path. I have come to the realization that no one has the EXACT answer as to why this is happening in such high numbers. No one has the right treatment for my child. All I can do is talk with other families and see what they are doing, what's working for them and then research the hell out of it. If I see signs that Kaelyn may benefit, we will think about trying it.
I have always feared mainstream medicine. We visit the doctor as rarely as possible and we have been fortunate that she has never been sick enough to require antibiotics. I truly feel they are just over used. I know that personally, I have been prescribed an antibiotic for a viral infection... What's the point in THAT? The doctor later admitted that antibiotics make a lot of people feel better, knowing they are taking medicine. I do NOT share this belief and both my doctor and our pediatrician were very pleased to hear we would prefer to let a virus/bacterial infection run it's course than give meds unless NEEDED. We have worked on our trust well enough that I know our current ped (I SEARCHED for this guy) will never suggest antibiotics again unless there is no other option. I find this trust invaluable.
I suppose this is a random "Hi Im new" post, but I am always so awkward at these and I admit that this site intimidates me a bit. I have read through several posts in different forums and wonder if I am a minority here and if my views will even be welcomed. I would like to state that I am an exceptionally open-minded person who is here to LEARN and understand my daughter more. I know that the answers I seek lie not in text books or the doctors Bible DSM-IV. The answers I seek lie in the words of families living with Autism and Asperger's.

*Quick back story- At the time Kaelyn received her initial diagnosis, she was "lost" to us. The loving, attentive, affectionate little girl we had, simply ceased to be. She became reclusive and most of the time, it was like she didn't know we were there. Our words were lost on her as she stared out the window watching traffic for hours, every day. Periods of meltdowns so intense that it would leave my husband and I sitting on the couch looking at her thinking, "Is there ANYTHING we can do for her". The diagnosis was no surprise for me. I had worked in group homes (hell holes, sorry) from age 19-29. I knew what I was seeing in my daughter. She would sit alone in a corner, lining her toys up by color and size, she would spin in the center of the room for INSANE amounts of time, I felt sick just watching the spinning. She had several hand gestures that were her stims that caused her to drop things she was holding and this mad her ANGRY. Now, about a year and a half later, with NO speech therapy (waiting lists ARGH) no OT... and she has more words than we can count. She understands us perfectly and responds as best she can. I can see her brain working as she TRIES to speak back. Frustration follows for all. I know it's easier for us than for her. I can't fathom not being able to convey my thoughts and wishes, I am simply too outspoken As I stated before, I have no wish in "curing" my daughter, only to help her in any way I can be the person she was meant to be.*

I truly hope that I am welcome here. I feel so alone sometimes I could scream. My family and friends backed away with the DX, leaving only my parents as support. I am married and my husband supports my research to an extent, he has recently begun to complain that has "taken a back seat" to Autism and Kaelyn... wants my research on a schedule. I want to keep the peace in the family, but I NEED to talk about the things I read and learn. Education has become like a drug for me. I have a hard time viewing it as a bad thing....

So, that's my life in a very very small nutshell. I hope to get to know some of you better.

Very pleased to meet you, Lainne, and welcome to the Wrong Planet community.

To WrongPlanet!! !

Hello and welcome. I enjoyed reading your intro and as I am very new to all this, you seem like who I want to be. As knowledgeable as you can possibly be and the biggest advocate your child can have.

Hi Lainne. Good to meet you.

My son is 7 and he was diagnosed with Asperger's in March this year. On Saturday he got green tinted glasses which he says make him "feel better". We went from the opticians to a swing park and for the first time he was able to go down the tall slides. He also says that he can smell things now. He has been saying for ages that he has no sense of smell. I'm hoping that the improved sense of smell might encourage him to eat more and a more varied diet.

I don't fully understand how the green lenses affect him, or how they work, so I've some new reading and research to focus on now! Like you, I've done a lot of research, reading and thinking in the past almost 2 years since my son was first identified as possibly autistic.

welcome lainne, I am the father of 2 children on the spectrum, as well as being autistic myself, not much was known about autism when I was young, so my parents had their hands full, with no resources available. My wife is also autistic, and although life can be difficult sometimes we have still led a full and relatively happy life. We both work and have understanding employers, and we hope that for our children when they get to that point.

Welcome to WP! I hope we can all learn from each other; you do bring a different perspective and experience, but that should help us broaden our understanding, as long as we all are open to it. Do be aware that as an AS site, we do get posters who will very bluntly and firmly state their opinions. Please don't let it intimidate you; I really feel you can enrich the conversation here and, well, many NT parents run away at the first sign of disagreement. That doesn't help any bridges get crossed; we all have to tough it out. I am a moderator here so it is my job to make sure it never gets TOO bad, but I do let some of the AS voice their opinions, even when highly negative, because they need to say it and, well, sometimes we actually need to hear it.

I find it interesting that you are seeing such huge improvements despite missing pieces of the prescribed regime. What types of things are you doing at home? I've long believed that what children on the spectrum need more than anything are parents willing to take the time to know them, their quirks, and sensitivities, and then conform the world around the child accordingly. I didn't know my son was on the spectrum when he was little; meeting his needs was simply what we did because we had no other course. Still, he was and is very high functioning, so our story is going to be different than yours. I've long worried about what the regime of treatments does in the negative for autistic children, for it all would go so far against what my son as a toddler could have handled and flourished with. These are bright kids that develop in fits and spurts; so much perceived "success" can be simply the luck of timing who really knows WHAT was the reason? But bringing those ideas into a group of parents with more highly affected children is something I'm not comfortable with, because they inevitably will say that I just can't understand, given I never went through what they did. And I didn't. I know that.

But I also know that the many scientific minds on these forums take issue with many of the common treatments because they do not feel they have basis in solid science. Well, I believe them. We've got brilliant scientific minds on this forum, if you know who to read. But there are always variables that haven't been identified yet, aren't there? How much is snakeoil and how much is an unidentified element stumbled onto by almost sheer luck?

I will say that most of us have agreed a certain percentage of kids can definitely improve on a special diet. What you will see different here is that we've all pretty much accepted the GFCF diet was a lucky stroke, in that most on the spectrum who benefit don't actually have celiac disease, but may have a sensitivity or allergy to gluten and/or casien. Soy can also be an issue, and that is what my son no longer eats. Most have discovered benefits from removing just gluten; some need the casien removed instead, a few need both, both the AS adults testing it on themselves are predominantly finding that gluten is most likely to make the difference.

I've recently watching some of the "recovery" you tube videos and I can't help wondering if those kids could have done the same with simply an attentive parent. I don't believe they are "recovered" because, while they are now making eye contact and interacting, they still move with a distinct autistic mannerism, in my opinion. It should be about helping each child reach their own unique maximum potential; not a "cure."

I do wonder if other conditions not yet identified can be presenting as autism, in which case different treatment is called for. And I've also long wondered if a child that would have been highly functioning, like my son, might present differently based on environmental causes. That seems quite probable; without his co-morbids, my son might never have been diagnosed at all.

I do firmly believe in the genetic theories, but think its valid to wonder why my son has issues that my AS father (undiagnosed, but I just "know") never did. Is it just the coupling of more genes, or something else? I can't help but think about all the fire retardant he may have consumed chewing on his pajamas as a baby ...

Basically, no one has the complete picture yet, but putting your notes together with ours might help.

I don't see a DAN doctor, btw. I worry too much that it is just a profit motive there, since the protocol does not seem to rest on sound science. But, honestly, I've worry that I've been too quick to call that.

I am curious what bio-medical you are using. You will find this community pretty strongly against metals removal; that is considered quack science that has been disproved by many studies, although I can pretty much recite the arguments in favor by heart as well. The weight, to me, is agaisnt it. But there may be other things I am just not aware of. I know many here who have found certain natural supplements to be very useful.

More than anything, though, I find myself wishing the split within the autistic community wasn't so wide. Think maybe we can work on that together? There is so much the "other side" could learn from the AS adults here, if both groups could just look past their differences for a while. It has been huge, HUGE for my son and our family to know why he does certain things and how he sees the world.

Welcome to WP! I hope we can all learn from each other; you do bring a different perspective and experience, but that should help us broaden our understanding, as long as we all are open to it. Do be aware that as an AS site, we do get posters who will very bluntly and firmly state their opinions. Please don't let it intimidate you; I really feel you can enrich the conversation here and, well, many NT parents run away at the first sign of disagreement. That doesn't help any bridges get crossed; we all have to tough it out. I am a moderator here so it is my job to make sure it never gets TOO bad, but I do let some of the AS voice their opinions, even when highly negative, because they need to say it and, well, sometimes we actually need to hear it.[/u]

While I AM intimidated, it's only because for the first time, I know that I am surrounded by people who know so much more than I, who understand much more than I... I definitely don't plan on running when someone disagrees. I am far too open-minded for that. I am well aware that many people here have far more education that I do on this and WELCOME any input. I do refuse to argue or fight. I have spent my time battling opinions and have found that a civil discussion, even when disagreeing, accomplishes SO much more. If a topic becomes too heated, I may back off until I can reply rationally and calmly. Other than that, I have no plans on going anywhere. The key to UNDERSTANDING my child is somewhere here, in the words of others in my position and in the word of people on the ASD spectrum. I am more than willing to to keep my personal, hurt feeling (should this happen) to myself should someone be a little TOO blunt with me

I find it interesting that you are seeing such huge improvements despite missing pieces of the prescribed regime. What types of things are you doing at home?

Just the gf/cf, which we removed and put her back on both, the results were VERY apparent. The gluten appears to have made it harder for her to interact with us and the casein cause stomach and bowel issues to NO end. She takes the antioxidant, on occasion.. as it comes in a capsule of NASTY powder that she simply refuses to take and she has long since figured out all our tricks at sneaking it in.. a good man was the one who suggested I try amd find antioxidant foods in place of the supplement. My husband and I do not work. I got injured at my job (group home) when I was in my 20's and my back is, well wrecked. I can go for short periods of time active and then I'm housebound, unable to even drive.. so I get disability from that. My husband... is NOT a people person. He prefers our quiet life and Kaelyn is his main priority. We live a VERY VERY fixed lifestyle. It's not easy, but as long as we are able, we would both very much like to be by Kaelyn's side. She LOVEs numbers, letters and shows about the two, so we have catered to that. Constantly provided her with hew programs, flashcards and toys that engaged her. Her current favorite program is "Your Baby Can Read".. and by GOD, she is starting to recognize words (I saw the infomercial and thought it was crap, I was wrong, at least for us).
Her strong suits are numbers and MUSIC... this child lives for music. All kinds. She loves instruments, so she has drums, a zylephone, and a guitar. She loves them all and plays them while singing in her own words. It's beautiful. She loves to dance, and spin to music. We love that, she engages us in those times, wants us to watch and cheer her on. It's our pleasure. So, my house is forever wall to wall flashcards and musical instruments. I believe VERY much in helping her with the things that DO interest her.

I've long believed that what children on the spectrum need more than anything are parents willing to take the time to know them, their quirks, and sensitivities, and then conform the world around the child accordingly.

Agreed, this has been our main focus without us actually realizing we had been doing it.

I didn't know my son was on the spectrum when he was little; meeting his needs was simply what we did because we had no other course. Still, he was and is very high functioning, so our story is going to be different than yours. I've long worried about what the regime of treatments does in the negative for autistic children, for it all would go so far against what my son as a toddler could have handled and flourished with. These are bright kids that develop in fits and spurts; so much perceived "success" can be simply the luck of timing who really knows WHAT was the reason? But bringing those ideas into a group of parents with more highly affected children is something I'm not comfortable with, because they inevitably will say that I just can't understand, given I never went through what they did. And I didn't. I know that.

But I also know that the many scientific minds on these forums take issue with many of the common treatments because they do not feel they have basis in solid science. Well, I believe them. We've got brilliant scientific minds on this forum, if you know who to read. But there are always variables that haven't been identified yet, aren't there? How much is snakeoil and how much is an unidentified element stumbled onto by almost sheer luck?

This is why I put her on the diet and took her off. After several months of watching improvement (this is BEFORE I saw the DAN! doctor) I questioned if she would have made the progress she did without the diet... so after she ate gluten... HOLY HELL. A month of.. tantrums, diarrhea, screaming, no sleep, she stopped making any attempts to speak or communicate other than screaming at us. It took a month to get her back to square one with gf. With casein, it was my father who gave her yogurt and only the physical symptoms returned, swollen belly, loose stools, DARK circles under her eyes and loss of appetite. So, another month later, we began again. I KNOW that every gain Kaelyn has made, she made herself. Her sheer WILL to communicate and reach us is EVIDENT. Yes, I believe the diet in some way helped enable her, but the progress is all her. I give HER the credit for the progress. We just assisted.

I will say that most of us have agreed a certain percentage of kids can definitely improve on a special diet. What you will see different here is that we've all pretty much accepted the GFCF diet was a lucky stroke, in that most on the spectrum who benefit don't actually have celiac disease, but may have a sensitivity or allergy to gluten and/or casien. Soy can also be an issue, and that is what my son no longer eats. Most have discovered benefits from removing just gluten; some need the casien removed instead, a few need both, both the AS adults testing it on themselves are predominantly finding that gluten is most likely to make the difference.

I've recently watching some of the "recovery" you tube videos and I can't help wondering if those kids could have done the same with simply an attentive parent. I don't believe they are "recovered" because, while they are now making eye contact and interacting, they still move with a distinct autistic mannerism, in my opinion. It should be about helping each child reach their own unique maximum potential; not a "cure."


I also have issues with "cure". I have no desire to cure her. Do what I can to make life easier, yes. "fix her"? No, nothing needs to be fixed. Like so many others in life, she simply needs assistance.

I do wonder if other conditions not yet identified can be presenting as autism, in which case different treatment is called for.

ME TOO!! !!

And I've also long wondered if a child that would have been highly functioning, like my son, might present differently based on environmental causes. That seems quite probable; without his co-morbids, my son might never have been diagnosed at all.

I do firmly believe in the genetic theories, but think its valid to wonder why my son has issues that my AS father (undiagnosed, but I just "know") never did. Is it just the coupling of more genes, or something else? I can't help but think about all the fire retardant he may have consumed chewing on his pajamas as a baby ...

Basically, no one has the complete picture yet, but putting your notes together with ours might help.

This is why I am here. I'm not here to tell anyone what they should be doing or anything like that. I KNOW that I have very little knowledge of my own on this, but frighteningly, more than anyone else around me. Because I chose to educate myself and now wallow in the diagnosis, as I have seen many of my friends do when their children were DXed. WTF is there to wallow about? That is your CHILD. That is your heart walking around in a human body. NO wallowing here. Only love and hope and the desire to reach out to others so that NO one feels so alone.

I don't see a DAN doctor, btw. I worry too much that it is just a profit motive there, since the protocol does not seem to rest on sound science. But, honestly, I've worry that I've been too quick to call that.

I sang the praises of our DAN! doc until I had questions. Questions that SHE didnt have the answers too, she GOOGLED them. I can Google as well. I'm not paying out the butt anymore for a Googled answer. I will find my own. As I said, I DID latch onto DAN! with everything I had and now... I back away, afraid to go on without a doctor, but very aware there was little help for me there and A LOT of unneeded cost.

I am curious what bio-medical you are using. You will find this community pretty strongly against metals removal; that is considered quack science that has been disproved by many studies, although I can pretty much recite the arguments in favor by heart as well. The weight, to me, is agaisnt it. But there may be other things I am just not aware of. I know many here who have found certain natural supplements to be very useful.

We have not done any chelation. I do have a hair metal test that an organization paid for, but I have yet to submit her sample. I feel like I am at a crossroads in all this and my confusion is great. The only Biomed here is a VERY healthy diet, no gluten, no casein and antioxidants. The DAN! gave me 8 supplements to work in in a MONTH.. I DON'T THINK SO!! ! How the heck would I ever know if something actually HELPED if I just loaded her full of things? We used the antioxidant only. Even that, infrequently.

More than anything, though, I find myself wishing the split within the autistic community wasn't so wide. Think maybe we can work on that together?

It would truly be my HONOR to be a part of bridging the two splits in the ASD community. Yet another reason why I am here. To learn, to understand, to see both sides.

There is so much the "other side" could learn from the AS adults here, if both groups could just look past their differences for a while. It has been huge, HUGE for my son and our family to know why he does certain things and how he sees the world.[/quote]

Sorry this is so long... forums are new to me.... :

Welcome . With my Jake what worked for him was a probicotic that helps with his lactose intolerance because it's hard to learn or even deal with things for anyone when they sick all the time. Funny this has casin in it, but it helps him none of the other diet changes worked for him because he doesn't have isuses with those foods for that I'm greatful. I'm sick of being asked about it to tell you the truth and being treating like a child abuser because my kid eats bread. Not that anyone here has done that, but it does happen alot. I mostly get this from people who know little or nothing about autism like they have found some holy something or other thinking they can fix Jake and be the hero. Sorry for the ventiness lol It's alway nice to find more mothers who find there austisic kids to be the wonder they are.

There is always someone that will give you a hard time about what you do or don't do with yor childern when they are austic and there is no clear right or wroung treatment at this point even more pooh hits the fan. I'm so happy you've found things that work for your little girl and help make her feel better.

The info here is invaluable! I'm so glad you found this site.
My son has diagnosed As, less than 2 years ago, and is dealing with all the high school issues and about life, as well.
I have been so deeply encouraged and quite impressed by the very thoughtful and intelligent advice and input from people (especially older teens and 20 somethings).
I spend many nights up late reading from all forums. Sometimes I get overwhelmed. I see there is a lot to deal with and no easy answers. But I so appreciate the many really decent people here. (especially you moms).
I have TONS of hope for my son. We didn't know why he was "different", but now we do. So he's trying to understand himself and how to handle life with the needs he has(thank God for IEP, never heard of it til the end of 10th grade!)
I love reading all that is shared here. I need to know all I can from people who have been there!