I am new here

[tcamp]

Hello,

I am new to this forum and looks like a great idea. My son was diagnosed on 9/14/01 to be in the autism spectrum. The doctor believes he is in the onset of it. Tommy does not like to be disturbed in any way shape or form, if he is he will have a huge tantrum. Most days he does not like to be touched, and his speech hasn't been improving, if anything its been regressing. Our form of communication is he throws a up at me to ask me for juice. :) Since it was first told to me that they thought he was autistic I have been looking into it and talking to people. I don't know about you guys but it seems to me that anyone and everyone is an expert on the subject, as a matter of fact I found someone who obviously knows more about it than a doctor of neurology/psychiatry.:o I say this because she stead fastly told me he was miss diagnosed. My grandma is even giving me a hard time. She said "everytime I have seen him he has been a happy child" so I kindly explained to her that even autistic children can be happy. It amazes me how so many people will tell you that you are wrong when they don't even really know what it is. I didn't know until about 2 months ago. I have been told that people just don't know what to say and want you to feel better. I don't know how telling someone that there is nothing wrong when that person finally got an answer to a question they have had for a long time is being helpful. We see them day in and day out.

I guess what I am wondering is, do any of you have this same problem? Let me know your experiences.

Oh yeah, I love it when people say, "well if that makes him autistic then my kids are also" it makes me want to say well then I hate to tell you this but your kids are autistic:p

[pimmy]

Well, I'll be the first to say welcome to our support group so to speak, I sure wish I didn't have to. At first it can be very over whelming, finding out about your child. Very scary, the future and all. I've been through all the emotions envolved, being scared, denial, angered, and so on. But when you see it day in and day out you learn to cope, cry and then go on. Yes, in my house, everyone told me that I was crazy about my daughter and her diagnosis, she's just slow, she's happy, she likes to play with her brothers, she'll catch up (with her speech). And so on. I have two older children 15, 13, as well as my 4 year old, daughter, Sarah, who has been diagnosed. PDD-NOS, or mildly autistic, whatever evaluation you go by. Some of my friends understand as much as they can, but I feel, unless you have a child with a disability, you really don't get it. As with anything new, you have to get use to the newness of everything that will be involved, evaluations, therapists, medications, diets, sensory issues, schooling, teachers, and so on. Some advice I can give, is to try to read as much as you can, then go by YOUR gut instincts, you KNOW your child, no matter what any doctor or therapist will say. Some days are better than others. I know in my house, schooling, some change in diet, and alot of patience are taking us far. We've only been dealing with our situation for about a year, for me it has gotten better, but I know this is only the beginning, and we have a long way to go. If you told me a year ago that Sarah would be where she is today, I could not have imagined that, great progress within a year. Her teacher says to be patient and you won't believe the changes in this next year. I'm not a patient person by any means, but I'll wait, and help and go on. Enough of me rambling...hope some of this makes sense...take care...Jodi

[matthewsmom]

Hi Tanya,

I'm also new here too with Matty just being diagnosed last month. I agree with you that I didn't know how to explain it to other people much more my relatives who interact with him very often- like the grandma's and grandpa. I held off telling them when I first found out because I didn't know much about autism myself. I was afraid they'd ask questions I couldn't answer. Moreover, I found myself crying a lot so I didn't want to do that to them.

In fact, the first person or persons I told, besides my husband is this board! I needed an avenue to ask my questions and so many of these members gave me a lot of advice and words of encouragement.

When I did tell my mom and in-laws, I felt I was more in control and kept it together. However, it didn't help when my mom asked me if I caused the autism because of a car accident I had when I was seven months pregnant with Matthew. He eventually was born two weeks later. I just held my upper lip and told her that wasn't the case.

When I did tell a few other people, I found that I would somehow feel angry when they would say--- Oh, I'm so sorry. I know I shouldn't feel that way, but I couldn't help but think- why are they sorry- that I have a beautiful son?? That just because he has ASD, he's a sorry thing for me to have??? I'm sorry if I sound angry but that's the jist of it. I would just smile back and say thank you but unfortunately, Jodi's statement is true that until they felt the same thing, they seem to just don't get it. Though I know, people are just trying to be kind and helpful- and they have very good intentions. I guess dealing with it, like grief, is a case by case thing for each person. And in no way, would I want to wish this on anyone just so they'd know what it's like.

So, I hope you'll be okay and that you'll find the support and encouragement from other parents on this board. We're facing a long journey with so many unknowns. Just remember, that you don't have to go down your road alone.

Take care-
Maria

[Dave]

First of all welcome to AT and yes I can relate to the many experts. I have had people come up with all sorts of things. Some people just over react, some people are just ignorant of autism and the other classifications I will leave alone. I've had people ask me if I was sure he just wan't deaf all the way to reccomending he may have Prader-Willi Syndrome. I've even had people tell me he knows what he's doing and so on, but my son is a low-functioning autistic. I think if these people would pour more time into support than their other maybe genuine efforts people like us might appreciate it more. I have a personal issue with people like this with my son personally, if you caught an angry type tone on there by the way. Anyways, I hope this site can aid you somehow or be of some help.

[LisaVee]

Hi Maria:

I can't believe it! I was also in a car wreck when I was 7 months pregnant with Rudy. The guy ran a red light and hit me head on. He didn't have a license or insurance. I broke 3 ribs and severely bruised my collar bone. I went into labor and they were able to stop it, but Rudy was still 6 weeks early. Kind of makes you wonder.....Anyway, I've decided along with others that I know Rudy best, and even though I love my parents inlaws etc. Ultimately I am responsible for Rudy's well being not them, and I'm just sorry they feel the way they do. My biggest challenge right now is getting a firm diagnosis. The school says aspergers, one psych says pdd/nos, another said adhd, and another said autism disorder. I'm about to pull my hair out. He just started special ed preschool and the teacher is having trouble trying to find a behavioral plan that works for Rudy. It's so depressing sometimes, and I get so tired....Also, I work full time and my husband has bipolar disorder, so it's like having 2 special needs kids sometimes. In addition all my family is in Texas. Sorry to vent and ramble but it feels good to get it out among folks who understand.

Best,
Lisa Valore

[Teresa Champion]

Hi,
Your screen name caught my eye, tcamp. I am Teechamp.
You are at the beginning of a long haul.
first, find a support group for you!
second, get him in an ABA program. You didn't say how old he was or I skipped over it. Use behavioral modification and get going on the Picture Exchange or PECs visuals to give him a way to communicate with you. Find those resources. No one is going to come knocking on your door offering you services. You have to go out and kick in their doors to get help.
take care,
Teresa

[tcamp]

I have been trying to get him help so far. It seems silly to say, but unfortunately he is still doing pretty good. The doctor said he was in the onset of it, he is still high functioning. His speech isn't delayed enough as of yet to get therapy. Next week the OT and behaviorolist will be coming out to meet with him. He is 20 months old. I was told he will probably qualify due to sensory and cognitive development. He is saying a couple more words so hopefully this won't be a huge problem for him. He has been doing a lot better since I stopped babysitting a boy that was younger than him. However, it is still apparent at times that something just isn't right. We went to Six Flags, Marine World and all he was interested in was clicking the buckles to the strollers over and over again. With some coxing he noticed all the "doggies", he called every animal there doggy. At the petting area all he did was pick up little rocks. Hopefully he won't regress alot and he will be high functioning. I think once I learn how to teach him things we can do well with him at the level he is currently at. But as you all know, no one can tell how they are going to turn out. Only time will tell. I have heard of PECS but I think as of now he doesn't really need it. The speech therapist thinks his lack of communication is do to behavior problems, which I found ironic because his ped thought his behavior problems were do to his lack of communication. She did say that it is easier for a child to qualify at 24 months because there are a lot more criteria to meet. Thanks for all your responses

[playtherapist]

Hello, let me first say that I am new here too, and after reading many of the posts I wanted to hopefully add some encouragement.

I am a play therapist and special needs consultant. I have worked with children of all special needs for over seven years. I have spent most of my time with families with children in the autistic spectrum.

Let me say this. YOU KNOW YOUR CHILD THE BEST!!!

I have seen how difficult it is for parents. You are constantly bombarded with ideas, opinions and comments from everyone from family, friends to even us professionals. Well even the professionals get it wrong. It has been my experience when they get it wrong they wont admit to it, so know what you are dealing with.

Please assured that you can do this, it is not an easy road, but you will find what works and be able to make things easier for your child and you. Your child is special and beautiful and no matter what intervention or program you try, you will be doing the best you can and that is all your child will ask for.

As for others who recommend interventions and programs, that is wonderful. BUT, remember not all interventions and programs work for all children. Some children need a different approach. An example of this, I have a number of families that we have doing ABA and it works fabulously, but other families that have tried it, it has been a nightmare, the same with floor-time and SonRise. Just be open to try new approaches, but as I said earlier YOU KNOW YOUR CHILD BEST, and when push comes to shove you are the ones who can see what avenue to take. Your professionals should follow along that plan with you and help you develop it to best suit your special munchkin and you.

BE ENCOURAGED, you are all the greatest toy in town to your child and the best game on your block

Sincerely
Lisa Mathieson