Autistic spectrum stuff

I haven't been on here lately,so little time for the computer. I dunno,my son is showing some signs of maybe being a little "off" so I got all these library books about autism and autistic spectrum disorders and realized that I myself have something called Asperger syndrome,which is a sort of autism that is mild and often goes with high IQ and higher developed language skills (like why I could read when I was 3 and spoke over 65 words before I was one year old). Anyway I am not sure what to do with Xander Jake, the signs he shows are pretty mild and would probably lead to an inconclusive diagnosis right now and the testing is the sort of thing that would stress him out big time...I just don't know what to do and I'm not sure what medicaid will cover anyway.I don't even know if I am asking anything here just looking for support maybe,it's late and I'm tired. Also my husband is having a really hard time accepting that anything might be up with Xander and he thinks I just don't discipline him enough.I think that's just denial. ANybody here been through any of this??

 

How old is Xander? A lot is just going to depend on his age/developmental stage. I've been studying autism quite a bit recently, because a dear friend of mine has cause for concern about her little one on-the-way. I'm trying to find that happy medium where I can be a good friend and supportive auntie, without encroaching on their personal space. (I figure, though, that by confiding in me about her concerns, she is asking for some support - so I'm preparing myself to be there).

Whatever happens, good luck - I'm sure he's a wonderful little boy!

 

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ha, tha'ts where we're at, but we're in canada, so it's a bit different. we do get funding right now, but when ds goes to school, we're going to have to fight to get him a 1:1. all our dreams of private school are gone, cant get funding for a TA for him unless he's in public school. might end up homeschooling bc he's so smart academically, but so guache socially...public school might be the worst place for him, dunno yet, will find out in sept i guess

back to the op
some book reccomendations:
unravelling the mystery of autism by seroussi
and special diets for special kids by lisa lewis
dietary intervention has made some really big differences. still trying to figure out how to get supplements into my kiddo (he's so oral defensive).
oh, and another book: children with starving brains
even without an official diagnosis, there's still alot you can do

are you dealing with any sensory issues? check out _the out of sync child_ and the sequel _the out of sync child has fun_

i'm starting to wonder how many parents of aspie/asd/autistic kids are on the spectrum. my ex has a lot of traits, and i guess i've got a few too (i'm hyperlexic, could read before i hit kindergarten

ps, i thought that the testing would be horrible for my ds, but it was really super child-friendly. the people we've encountered so far, working in this field, have been just terrific. it was so nice to have some validation, and some answers to what's been goign on.

 

I believe I have vaccine injury, which presents itself with many of the symptoms of autism. My oldest child is the same way ever since receiving her first MMR shot and having a terrible reaction to it (before that, she was only given some of the recommended vaccines on a delayed schedule. she has had no further vaccines since the reaction to the MMR). I refuse to get an official diagnosis or label her. I am homeschooling, so it doesn't matter about what problems school might have with her. We both do much better if we avoid certain foods, gluten and sugar cause both of us the most problems. A friend recently sent me this website, maybe it will help you out some, too. http://www.generationrescue.org/what_action.html we were already doing most of the things they recommend (before reading what that website had to say about it, just following my Mama intuition), with amazing results. You'd never know she used to have these really scary fits that went far beyond your normal temper tantrums. She has really bloomed since the diet changes, it has really made her life (and mine) so much better.

 

Many incredibly smart people are on some level of the autistic spectrum. Your child might just be a "gifted" child. I know I had many Asperger-like symptoms when I was younger which turned out being something that is often known as the gifted syndrome. Something like 5% of students are considered gifted yet they account for 25% of high school and college dropouts due to social inefficiencies and boredom of curriculum.

That's not to discount the fact that he may actually have Aspergers but don't jump to conclusions just yet.

 

gifted vs AS

 

I worked with autistic clients in the past and I think the thing that helped the most was diet. Doing away with all the toxins like the artificial flavorings, colorings, preservatives, and stuff like that. Also being aware of any even tiny food allergies. And those damn immunizations. The way Dakota reacted to the prevnar there is no way he will ever have the MMR. It scares me to death. Last night a "friend" tried to tell me that now that he is 3 the risk of getting autism is past so I should get him immunized. I don't think so. He's doing just fine without them. Like a previous poster said. Love your child and do what your gut tells you to do.

Kathi

 

yeah no label!!!!!
my youngest has always shown signs of autism... affecting her life in obvious ways over the years... both her n i have learned to cope with her symptoms, behaviours mannerisms and even style of learning,,,, shes my baby.... shes extremely intelligent and bright and wonderful ,,,, yet the public school system is a joke,,,, gettin help from them is a joke,,, getting tests is a joke n for what in the end,, a label that says they are special educated ... HA!yes my children are both special and both educated.... thats just the way it is for us,,,, one does things her way , i do things mine n youngun does things hers,,, it works,,, we worked around her different abilities and we lived our lives to the fullest..... til custody was granted (HA!) to the ex,,, now she is in the school system again, got her labels,( which will be with her for life ) and is a miserable, sad, misguided left behind 12 year old...

 

instead of looking up autism, try looking up information on sensory defensiveness or sensory integration disorder instead.... don't know about you, but for me and my child(ren) it was our overly sensitive nature that caused us the most problems. See what a huge difference you get from reducing your child's exposure to chemicals that irritate him. For us, artificial fragrances is the very worst, and it's in nearly everything. Even some fragrance-free cleaning products still irritate, it's definitely a trial-and-error learning process. I have found that there's not much you can't clean with baking soda, or vinegar, or lemon juice, even human bodies!


Cooking without wheat was scary at first. but it wasn't nearly as scary as my child's behavior when I let our diet slip. I'm not being authoritarian about the diet changes, I want her to recognize how certain foods make her feel, so she can choose for herself not to eat them. If she sees kids eating cupcakes at the homeschool meetings, she can have one, but I remind her to pay attention to how she feels after she eats it. She is making her own healthy choices now, eating more, and choosing more healthy things to eat. Eliminating wheat helped so much, but not enough, so I started working on all gluten containing ingredients. I was hoping it was just the wheat that was the problem, but it's obviously a gluten issue as well. I know she is (we are) also allergic to dairy, but it causes stuffy nose and not the behavior/anger problems, and with three very highly allergic people, all three of us with different allergies, if I eliminated dairy it wouldn't leave us much at all to eat anymore.

 

absolutely! my kiddo only had 2 rounds of vaxes, and i feel sick whenever i consider what might have happened to him if he'd been given the mmr. i've read a couple of case studies of kids who were unvaxed until they were older (5 and 12 i think) and then developed autistic traits immediately following their vaxes. Anyways, it's not going to happen here.

 

I thought they stopped putting mercury in the vaccines as of a few years ago? Or is it not the mercury that is causing the problem? Should I be concerned? So far Jim has sailed through his vacs without a fever or irritation, nothing. He doesn't even get irritable.

 

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Mercury isn't the only scary thing about vaccines. We have auto-immune disorders of various kinds in our family, and the idea of further damaging a compromised immune system with vaccines is much more frightening to me than the diseases the vaccines are intended to prevent. And, as far as I know (my kids have not had any shots since 2003, so my info is at least two or three years old) they are still using thimerasol as a preservative in many of the combination vaccines, according to our pediatrician. As a parent, you have the right to request the patient information and package inserts that legally must be available with any prescription medication. Get it, read it, understand what it says *before* agreeing to inject your child with those things.

 

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Wow,so many replies! Let me say first I didn't have Xander vac'ed because of all the research I did on it,also my dd who is nearly 12 (and gifted with some asperger/OCD traits) had a vaccine reaction when she was a baby,which is when I stopped getting her vac'ed too. But given my own history I really feel there is a genetic component to all this stuff. Oh and Xander is 3 years old. He can communicate verbally but also does alot of non-communicative speaking,like he repeats stuff from tv ("this pbs program was produced with support from viewers like you,thank you" he says this like 50 times a day,for example) and he's got this obsession with traffic lights and he talks about them alot or he'll say "red stop,yellow slow down,green means go!" while he's walking around. He hops every 3rd step in the grocery store and no where else... I dunno how much of it is just normal weird 3 year old stuff. My personal experiences growing up with asperger at a time when it wasn't understood are pretty awful,my mom dragged me to lots of shrinks,had me in an adolescent psych ward,special schools for behavior problems, I don't want my kids to deal with any of that, I guess I have a real distrust of the whole medical system. ALso somebody asked about sensitivities:he hates certain sounds,fans freak him out, he has extremely fair skin and his pediatrician said he needs sunblock and sun protection all the time, I give him soymilk because dairy gives him the runs, he breaks out if he eats hummus,he gets weird little skin rashes and terrible diaper rash. He's afraid of the potty,the vaccuum,the lawn mower,anything that makes noises. except motorcycles,he loves them but covers his ears. I mentioned my daughter,she is quirky but gets along with other kids,isn't socially impaired (the way I was) but we are homeschooling because being gifted the school just wasn't cutting it for her. Sorry this is such a disorganized response,but good to have anyone to talk about this with.thanks

 

If I were you, I'd take him to an allergist. Have him checked for galactosemia in particular. I know a little girl who fits your description to a t, and has been really helped by a total diet overhaul (different diet overhaul than what has helped my DD and me). Since he is very sensitive, you are going to really have to be extra careful about what he eats and environmental irritants. You would be suprised what a difference reducing those irritants will make.


the grocery store... that is a very irritating place for me to go. Not only do they clean the floors with some gawdawful chemical concoction, but there are so many smells, bright lights, noises, and other things going on all at the same time. I get jittery and antsy, and really grouchy there. Just walking down the aisle with the sugary cereals gives me a sugar rush, I can taste the sugar in my mouth, and then I later crash just like I would if I had eaten them, but not to the same extreme.

 

Navigating the medical scene is tough, he is on medicaid which means we have to fight tooth and nail to get anything beyond basic health care. I really appreciate all the input and help to try and get my bearings so I can help him

 

hi terrapin!

my boy is on the autistic spectrum too (maybe you remember my post about it - but maybe not, that was years ago ;P you even had some kind words for me and my boy)
he's diagnosed pdd-nos, but mainly for SID (pdd-nos, gets you better services around here supposedly, not that he's gotten much of that) and he is undiagnosed tourette's/obesessive compulsive as well.

diagnosis - yeah diagnosis only helps if it gives you access to services. that's what i thought we were going to get but here we are 3 years later and still no speech therapy or occupational therapy. very frustrating!



niki is 9 years old now and doing pretty good. i have him in public school at the moment but i don't know how long that will last. he's not getting the services i was hoping for which is the only reason we've stuck with school at all.

he's turning into a beautiful person, though. i've really enjoyed watching him grow and develope after i got over the fear and sadness of when we first realized what was going on with our boy. i think ASD although can make for some challenges in life, can also be magical. niki is the most magical child i know. i hope it is that way for you and xander too. my relationship with niki is SO special. i feel strongly that he is going to be just fine.

but we've begun to work on diet as well to help out. the first thing we cut out was dairy. i was so surprised when he stopped wetting the bed that very same week! we cut out additives, preservatives, food dye and we started giving him omegas. the next thing i want to do is find a good liquid vit b complex supplement. i've heard great things about it.

i do think these dietary changes help with the sensory issues.

any way, i really hope that you are getting the info you need and that things are going well for you and the kids. i know how overwhelming it can feel at first, luckily xander has such a great mom! with your own experience in the autistic spectrum i'm sure you will be the best help he could possibly have. (my hubby thinks he is on the spectrum too, he has MANY sensory issues.)

just wanted to let you know that i'm always happy to talk about autism.
let's keep talking about this. i'm amazed that there are so many of us here and i feel so comforted knowing that there are other hip mamas trying to do the best for their kids!

kathy

ps - niki used to do the echoing phrases but has grown out of it the last couple of years. does xander like to line up his toys? niki always did that too. he still LOVES spinning wheels and toys.

 

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