Anyone want to talk? I have a 17 yr old son with Autism

Marie - posted on 09/26/2012

yes i have a 19 year old with autismstories to share i live in Suffolk where do you live i wold love to meet with other mums to share stories i have lots of info Marie

Tiziana - posted on 11/12/2008

Donna, that is amazing. How wonderful for Bridget,,,Ya know,,,we have to be really careful around these kids,,,cause they pick up everything and they mimic so well,,,lol. Once they get onto something, they've got it. How sweet, the most simple things are... sigh!

It is such a gift that we are able to get a kick out of it.



Best wishes to you,, keep smiling

Donna - posted on 11/12/2008

So nice to hear from you Tiziana. Bridget is learning everyone's middle names now. She discovered just a few weeks ago she has a middle name, so now she's asking everyone what THERE's is. She laughs so excitedly when we tell her.

Tiziana - posted on 11/10/2008

hi Donna, another hard working mom,,,I guess when it comes to the bottom line,,,All we want for our kids is for them to feel safe and happy in their environment. Of course learn all that they can in the meantime, and life is good. you sound very dedicated to your daughter, she is very lucky to have you.

I f you are ever wanting to talk, I have posted my home number and personal email on this thread....please feel free to contact me.



Your daughter is very much like my own son with the Tactile Defensiveness thing going on,,,,we have tried deep massage and Brush therapy as well as other things,,,



Michael is quite the character,,,, He can actually lie now,,,,lol,,,which is a teenage thing ,,,but it's so funny cause I never thought he could have the thought process to be able to do it. He is so honest as well,,,my trooper,,,love him dearly.



This is why we wake up in the morning,,, these kids continue to take our breath away,,,what a lovely Blessing indeed!

Tiziana - posted on 11/10/2008

Hi Kelly, there are a lot of sites if you google them,,,but one I like is www.gfcfdiet.com



Unfortunately, lactose free milk won't cut it, Conner would need to completely get off all Dairy (Casein)

As for your daughter going on it as well, I think that is a great idea,,,most kids have food allergies,,and getting them off of casein and gluten is a good start. I would definately start with the casein first.

As for vitamins,,,I would highly recommend the whole scale of essential fatty acids,,,3,6,9 a good source would be udo's choice oil or you can get them in gel caps. And a good brand I trust is Flora.

Also Vitamins are great,,,B's especially,,,,B-15 really important as well as all trace minerals. I love getting these through natural juices also called superfoods. Monavie is a great one with the Acai berry in it. Because I am opening up a Health food store in the very near future,,,I have become a distributor for many product lines, I f you want more info on better nutrition you can contact me at any time. My personal email is

tiziana_7@sympatico.ca



I wish you the best and if you need anything, please let me know, I am glad to help.

Tiziana - posted on 11/10/2008

Hi Jhona, So nice to hear positive things in this column. As parents, a lot of us struggle with a diagnosis. It is written on paper and documented! Most of us try to make things perfect so that we can burn that document.



Good for you and your family,,Leif sounds absolutely charming! Hey,,he learned to ride a bike a lot sooner than my Michael did! I think that it is the spacial awareness thing that gets most of these kids.....but in time, they can do anything.

Keep doing what you're doing and be happy.



God Bless,



T

Donna - posted on 11/08/2008

oh...her expressive language is 50 months now according to the Brigance Diagnostic Inventory in October

Donna - posted on 11/08/2008

I have a 6 year old girl who was diagnosed with PDD when she was 2 years old. She's been receiving early intervention services from the time she was 17 months old. She wasn't walking on her own and had no words at the age of 16 months, so we started the process. Looking back at videos, you can see that she never responded to her name being called, but had no difficulty hearing. You can see that she had low muscle tone in her lower body with the way she sat.....she sat with her legs in the shape of a W. You could see her "melding" her body into sand and constantly rubbing herself up to things like poles and people's legs....these were sensory needs that she had. She hasn't been back to a pediatri neurologist since the age of 2, so I'd be interested in seeing what her final diagnosis is. She's in a self-contained class of 6 kids in a normal elementary school, and receives all the services she needs. She is reading above her age, and writing at her age level, but she has the emotional\social behavior of a 3 year old.

She's able to swim, and is starting to ride a bike on her own with her training wheels. She loves school, and loves the kids that she's in class with, so she's just thriving.

It's a lot of work, but I truly feel she's my little angel

Kelly - posted on 11/08/2008

Hi..Could you give me some books to read or websites to look up about the special diet? I do the organic things already and by the lactose free milk and such but there are things getting through. I wanted to do this with my daughter as well since she is in kindergarten this year. Also, what types of vitamens would you recommend? He's doing the Omega 3-Fish Oil but didn't know if there was anything else. B-12?

Thanks

Kelly

Jhona - posted on 11/08/2008

I meant PDD-NOS...sorry. It's early, I haven't had my full cup of coffee and I was excited to share:) I didn't do a great job of proof-reading!

Jhona - posted on 11/08/2008

My son is 9, almost 10. He was diagnosed with PPD-NOS when he was three and then Asperger's when he was 6. We knew from 5 months old that something was different. I should say that my parents did but I refused to even look at the possibility and my doctor didn't see anything either. But by age one there was no denying it. So we started in-home therapy and at age three he started attending an early childhood class. We were stationed in Germany at the time and our options were very limited. But it was a small group of kids(4!!!) and he got a lot of one-on-one help. He continued to attend these types of classes and would recieve therapy at home and then at public school. We chose to homeschool our children now. Thankfully the Army provides us with everything Leif would need as far as therapy is concerned. This year Leif no longer needs to recieve occupational or physical therapy. We're still working on his r in speech but he is doing so wonderful. The greatest compliment that we, as parents, ever hear is this: Wow! I didn't even know. He seems so normal! HA HA HA! None of us are normal;) I'm quick to compliment my son and remind them how hard he has and is working! The big news around here is that Leif learned to ride the bike last week! He can ride for 1 block!!! My husband is a big mountain biker and has been working on and off with Leif since we could bring on the training wheels. Leif decided on his own one afternoon that he was going to give it a try! You should have seen the joy on his face when he came charging in the house!!! I am constantly encouraged by my sons endurance:)

Tiziana - posted on 11/08/2008

Hi Erin, thanks for sharing that with us, I am sure that there are a lot of moms and dads that will benefit from that. I am happy for your son Cody, seems to be doing very well. I wish you the best in all you do.



keep smiling



T

Tiziana - posted on 11/08/2008

hi Sharon, I think all of us moms always want the best for our kids, and I know with aspergers, these kids seem, what is perceived 'normal' but then there is a flare up over what some would say, a silly thing.

i always wanted Michael to be perfect,,,and when i finally realized, he will be what he will be, I finally calmed down and started living a more relaxing life. I now LOVE watching people look at him and try and figure out what is going on. I used to hate it,,,partly because I thought it reflected on me. And I know that there are people who are rude and ignorant. Ignorant people have a chance, at least they are curios, but rude people,,,I just let them have it! Most feel badly afterwards, and then there are some that don't give a rip. I just let them stew in their rudeness.



as far as the friend thing,,,try and remember,,that we are trying to make these kids come into our world,,,how scary is that? Their senses are so acute,,,so the anxiety level is way high,,,it is like a chain reaction, the hormones become imbalanced on a daily basis because no one should have that kind of fear in their lives. he will make friends in time, it cannot be forced.

Henry has a great mom, he is very blessed to have you.



Keep doing what it is you are doing, I have put in some other messages about diet and so on, I don't want to repeat myself.

Take care



T

Tiziana - posted on 11/08/2008

Hi Kelly, as I talk to more and more ppl on here, more of my son's growing up issues are divulged. My son also hurt himself and others too. Was quite scary. He didn't know danger and would take off and start running. I would call his name and he couldn't hear me at all. He was almost hit by a sod truck twice!

As far as the confidence thing, I know that in my profession, I am studying to be a Naturopathic and Homoeopathic Doctor, I have found that taking away ALL processed foods, preservatives, additives, casein, and gluten are good ways of detoxifying the body. I know this sounds hard to do, but I also know what the results achieve. No one needs processed foods in their system. I could go on and on. I found that within days, behaviour changed DRAMATICALLY. Once these kids have serenity in their lives, it is much easier to implement any kind of treatment,,,especially for behaviour. Also. once these kids calm down,,they attract other children to them who can help them along the way. At least that is what I found. It is a lot of work,,most of us have an allergy or sensitivity to food or anything that is put on the body for that matter. These kids have senses that are acute, so much so that something that may seem insignificant to us, is HUGE for them. Conner also has Bi-Polar issues, there is a lot of hormonal deficiencies. Things need to level out as much as possible.

Please know that none of this is your fault, and that i am not saying that you don't feed your child properly. People in general are allergic to the simplest things.



Keep your chin up, only you can handle this situation that has been given to you,,,and you are doing a wonderful job.

Regards,

Tiziana

Erin - posted on 11/07/2008

Hi , I am new to the site. My son Cody has some similar issues as Conner. He is in Kindergarden and in a special needs class for emotionally disabled. They are using "the Nurtured Heart- Transforming the difficult child" and have a parent support group. I am amazed at how much difference it has made. He has slowed down on hurting himself and others, his ocd is becoming something he is aware of and he is starting to love/respect himself. It is written for parents and teachers and is an interesting read to say the least.

Sharon - posted on 11/07/2008

hi, my son henry was diagnosed at 5 with aspergers and the struggle we've both had since he started school has been really hard.Got him into mainstream on a iep, but for 6 years they treated him as a naughty kid and a troublemaker,even when they were sending him to surestart and the local special school for help. In september he started the local grammer school and the change in him is amazing.He is getting the help he needed years ago from thier learning mentors and the work is hard enough for him not to be bored.Until now i did not know how frustred he was and that was were his anger was coming from. Things are not perfect, still get cross when people stare when he kicks of, knowing a lot of the people we know who think he is "nuthead" makes me sad,but when he is having a calm time he's great. The thing that makes me sad is the lack of friends he has, and although it dosn't seem to upset him, i cann't help feeling he must be lonely; wouldn't change him for anything!

Kelly - posted on 11/07/2008

Hi, My name is Kelly and my 8 year old was recently diagnosed with Asperger and Bi-Polar. Last year in 1st grade was a nightmare. Conner would have meltdowns and hurt himself and then go to school and say that we did it. He really thought we did because we were restraining him but they would call DYFS on us even though they new his behaviors. (He would bang his head in school a lot). This year has been a lot better only because of experience I think. We have found better doctors that are listening to us and his teachers this year are wonderful. You can tell he's different and very hard on himself to where he will harm himself if he can't figure something out. Does anyone know of techniques to build self confidence? We are doing Social Skills classes and he is in Taekwondo which has been great but he's still now there.

Thanks

Kelly

Tiziana - posted on 11/07/2008

hi Kerri, Im glad to hear your son is doing well. You have implemented a lot of the same things I did, ABA, except we had a doctor Ron Leaf who taught me to apply Discreet Trial Teachings,,kinda the same as ABA but for my son this worked better. Also Mike was on both those diets you mentioned,,Glutein and Casein free,,,he responded very well to those too.

Once I realized that Mike would always be unique from other kids his age,,things were better,,,I didnt feel like a failure etc. And I always watched his behaviours and thought,,,what would these behaviours look like to others if he was ten yrs older? Now at 17,,Mike is able to take care of himself Hygienically, and prepare his own foods, wash his laundry, tidy his room, and go out for dinner with his friends and pay for it too. I am still working on life skills, those are always a good thing to have, and I want him to learn more about money and what it does for you etc. Mike has asked if he could get a job somewhere, which is great! He noticed his younger sister spending her own money and enjoying it because of her own job. These are small things to most people, but to me they are huge milestones. He's such a sweet giant (he's 6ft 2") And we love for all that he is.There is so much more I could tell you, if you would like to chat sometime, pls call me or I can call you. My number is 519 364 6592,,pls don't hesitate to call,,I have done this many times for others,,,wish there was someone there when I was going through it.



Blessings

T

Kerri - posted on 11/07/2008

Hi. I am new to this site. My son Aaron was diagnosed at 3 with PDD/NOS. He is now 5 and amazing. He has had a lot of therapy (ABA/speech/early intervention). He has also been on the GF/CF diet for a year. I know that some people don't think this diet helps but for Aaron he stated talking after 3 days on the diet. I am so proud of how far he has come in such a short time. He still is behind socially. He is great talking to adults but not so much with kids his own age. Glad to hear your son is going so well. I always wonder what the future holds.

Tiziana - posted on 11/07/2008

Hi Grace, Michael began talking quite early,,,actually it was quite scary how much he talked! But by 18 mths, and after he had his measles, mumps and rubella shots, he stopped talking all together,,,basically overnight. Then I saw more signs of Autism like walking on his tippy toes and rocking back and forth, and not even responding to his younger sister and older brother! Was quite scary. Then by age 6 I heard his voice again.



Today Michael is doing really well, he goes to high school and is in grade 12. His program is slightly modified so that he can succeed. He is very sociable, and affectionate. Loves to read and is a computer expert. He also enjoys singing and listening to classical music. He loves going out with friends and doing things with them. He takes our breath away, I wouldn't change him for the world.

Grace if you would like to speak further by phone, that would be fine with me. My number is 519 364 6592, or you can leave me your number and I can call you right back.

Keep smiling

T

Grace - posted on 11/07/2008

My son is 4 and has ASD.He is non verbal also (severe Dyspraxia). How old was your son when he started talking? How is he doing now? :)