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  #1  
April 6th, 2008, 12:04 AM
soImarriedAnerd's Avatar Platinum Supermommy
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Please tell us your story of autism....
A couple questions for you all...please add more if you would!
How old was DC?
Any other siblings have it?
What did you notice that made you think it? (or did the doctor/teacher say something)
What problems/challenges have you had with the medical community/insurance companies?
What type of support do you get?
What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked")
What if anything do you think caused your child's autism?
I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that?
Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please )
What would you like all of us to know?
I will be bringing over my board here in the next day, just wanted to give you guys a start on what i think will be alot of questions. Thanks for having us. I know I am super excited to learn more from some BTDT moms!
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  #2  
April 6th, 2008, 12:31 PM
MrsStuartD's Avatar Platinum Supermommy
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A couple questions for you all...please add more if you would!
How old was DC? Cameron was diagnosed at 2 and a half.
Any other siblings have it? We only have one other and he's too young to diagnose so we don't know yet.
What did you notice that made you think it? (or did the doctor/teacher say something) We knew when Cameron was a year old. He's always organized his blocks by color, he moves things across his face for visual stimulation, he tenses up when he gets excited (but even the smallest things will make him tense up), he wasn't talking at all and he didn't know how to play with toys.
What problems/challenges have you had with the medical community/insurance companies? We have different organizations here in Canada and the government funds most everything but if you go with the funded route you end up on very long waiting lists.
What type of support do you get? There is a free speech therapy group, tons of workshops for parents, government funding, free playgroups and tons of emotional support groups.
What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked") They say we can't really trust Cameron # score because of his age, but he is moderate to sever until he can be retested at age 5. He has a score of 19, 12 is moderate and 24-32 is severe.
What if anything do you think caused your child's autism? I don't believe anything caused his autism. I believe he was born with it.
I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that? Unfortunately there are so many abbreviations, especially with any special needs diagnosis that it's almost impossible to follow them all.
Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please ) In my opinion it's highly doubtful that vaccines have anything to do with autism. How could it be linked if it's more likely in boys and even more likely in siblings? As far as I know they've researched it down to the molecular level and have yet to find a cause for autism.
What would you like all of us to know? Autistic children are beautiful, talented and special in their own way. When Cameron asked for juice for the first time a few weeks ago using a word it was like magic. Every little thing that he succeeds at doing is a huge accomplishment and is celebrated in our home.
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  #3  
April 6th, 2008, 05:58 PM
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Please tell us your story of autism....
A couple questions for you all...please add more if you would!
How old was DC? He was diagnosed at 2.5 years old

Any other siblings have it? NO
What did you notice that made you think it? (or did the doctor/teacher say something)I was posting concerns I had on another forum and someone said it sounds like Autism. I went to Jay's Ped but he dismissed autism. I got him evaluated with EI and his teacher that comes out was noticing alot of red flags so we went and got him evaluated.
What problems/challenges have you had with the medical community/insurance companies?
What type of support do you get?So far we just get services through EI. I have to finish paperwork for medicaid so we can get wraparound services. He gets one hour a week with a teacher and one hour a week with a OT.
What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked")Jay has Moderate Autism
What if anything do you think caused your child's autism?I think he was born with it.
I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that?
Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please )Not sure. I think it could be a possibility but there is no proof that vacinations are linked to Autism.
What would you like all of us to know?To not take for granted any little things your child does for the first time. The other day Jay stacked wooden blocks for the first time and I was so happy I just about cried. That having a Autistic child is a blessing. I have gone through the grief process and yesterday I went to a Autism fair and the parents were so compasionate. You almost have to become that way when having a child with Autism. Its very challenging raising a Special need child but I would not change it for anything. Every small accomplishment that Jay makes brings so much Joy and Hope. I know that God gave me my special little soul for a reason.
I will be bringing over my board here in the next day, just wanted to give you guys a start on what i think will be alot of questions. Thanks for having us. I know I am super excited to learn more from some BTDT moms!
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  #4  
April 7th, 2008, 06:48 AM
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How old was DC? We've suspected since he was around 2.5; he just turned 3

Any other siblings have it? no

What did you notice that made you think it? (or did the doctor/teacher say something) We started noticing his obsession with order and spinning objects at around 9 or 10 months, the sensory issues by 18 months, and the social issues by age 2.5, which is when we started to piece it all together and brought our suspicions to the pediatrician

What problems/challenges have you had with the medical community/insurance companies? We're just starting out on this journey, so our only challenge at this point has been the long waiting list just to be evaluated

What type of support do you get? None yet (he'll be attending preschool for children with special needs)

What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked") We suspect Aspergers, which is at the mild end of the spectrum

What if anything do you think caused your child's autism? I suspect that it stems from the severe reaction he had after his 6 month vaccinations

I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that? PDD-NOS stands for "pervasive developmental disorder-not otherwise specified" which is when someone has some characteristics of autism but not enough to be categorized. AS stands for Asperger's Syndrome, ASD stands for Autism Spectrum Disorder...that's all I can think of.

Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please ) While I do believe autism can be purely genetic, I do believe vaccines can play a role (an indirect cause or a catalyst for some). The mercury may be nearly phased out, but vaccines are still loaded with massive amounts of neurotoxic aluminum, well beyond the FDA's safety threshold. Since Science still maintains that the vaccine-autism connection is biologically plausible, I do, too.

What would you like all of us to know? Don't hesitate to call Early Intervention is your little one is showing developmental delays! We didn't learn until recently that gross motor delays can be an early warning sign. Ds didn't crawl until 13 months and didn't walk until nearly 18 months; had we known at the time, we would have called EI and had him evaluated much sooner.
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  #5  
April 7th, 2008, 08:37 AM
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I don't have any questions that I can think of to add to this but it was very interesting learning about it. Thanks!
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  #6  
April 7th, 2008, 05:23 PM
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How old was DC? Gus was diagnosed at age 2˝
Any other siblings have it? No, however it has been suggested by his therapists that I am on the spectrum.
What did you notice that made you think it? (or did the doctor/teacher say something) I didn't notice anything, well, I did notice he was different and behind his siblings in develeopment and "quirky" but I just explained everything away in my mind and tried not to compare him to his sibs, until 2 of his doctors spelled it out for me
What problems/challenges have you had with the medical community/insurance companies? None, our insurance and the state and school system have been great! We have military insurance, Tricare, and they have authorized everything suggested by his pediatric development specialist, the state provided him with free preschool and summer camp, and the school system provides him with therapists and special needs preschool annexed to the elementary school he will transition into at 5.
What type of support do you get? There is a parent support group that meets monthly, and my family and friends are very supportive. One of my best friends works with mostly autistic children and young adults as a life skills aide, and another works in the school system as a personal aide to an autistic boy, so I have them to go to with questions and advice
What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked") Angus was bordering on moderate a year ago, today he is mild. At age 3 he was almost non-verbal, he did not even say mama; today he speaks (not clearly but we are working on that) in sentences!
What if anything do you think caused your child's autism? Genetics. Looking back to his infancy, now that I know what to look for, he had signs I can think of as far back as 3 months old. And he didn't even get his vaccines until right after the very doctor's appointment that it was suggested we test him for autism, so even if I had doubts about vaccines, I know it wasn't his MMR
I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that? Autism Spectrum Disorders (ASD), are also known as Pervasive Developmental Disorders (PDDs). The 3 main ASDs are Autism, Asperger Syndrome, and PDD-NOS. NOS stands for "not otherwise specified" and is applied when the criteria for a more specific diagnosis is not met.
Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please ) I used to question the possibility, but in the time between Gus' diagnosis to the present, I have done so much research into this I am exhausted thinking about it! I no longer believe there is anything to debate. I personally strongly believe vaccines do not cause autism. I do believe some adverse vaccine reactions can lead to illnesses or brain damage with symptoms which mimic autism, but vaccines themselves do not cause autism. As for the whole MMR scare, there is just way too much evidence refuting that theory and nothing convincing to support it. While I did delay vaccinations for a while after my son's diagnosis while I did my research, I am now comfortable enough in that knowledge that I have continued to vaccinate my children.
What would you like all of us to know? Everything the other mamas have said, and this: when you see a mother with a naughty child having a huge temper tantrum in public, seemingly letting her child get away with his/her behavior, don't be too quick to judge her a bad parent - her child could be on the spectrum - 1 in 150 are. And thank you for your interest!
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  #7  
April 7th, 2008, 08:56 PM
Mjp121212's Avatar Platinum Supermommy
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How old was DC? His pedi told us he was on the spectrum at 16m old. I had thought so from about 9m on, but his then pedi dismissed it. He begam therapy Oct.31, 2006.
Any other siblings have it? He is an only child, though his older cousin as asperger's.
What did you notice that made you think it? (or did the doctor/teacher say something) He was self stimming severely, had NO verbal or non verbal language, he wouldn't play with toys, he wasn't developing. I made a post on the July 05 PR and our "angel" as I like to call her sent me a PM telling me she thought he might have an ASD. I agreed. She told me how to get him help. I did. And I have my little boy back!
What problems/challenges have you had with the medical community/insurance companies? Ins. refuses to pay anything! We got pre-authorized, then they backed out. A charity agency for special needs pays 100% thank God for all private pay therapy. Until he turns 3 he is also receiving treatment from EI.
What type of support do you get As for therapy he gets 2 speeches every week, and he was getting 1 OT and 1 developmental a week and 1 nutritionist a month. Now he gets the OT and developmental 2 times a month and Nut. every other month. As soon as the private pay can squeeze him in then we are doing private pay OT once a week.
What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked") Brady started out pretty severe.....like a caged animal. ACtually we were told to prepare ourselves that he may never speak or be any where near typical. Now...he is so mild the dr has accused me of swapping him! LOL He talks in sentences, full of spirit and oomph....its amazing!
What if anything do you think caused your child's autism? Genetics, antibiotics....
I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that? I think the PP's have answered this....
Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please ) I know the MMR didn't cause his....he hasn't had it yet. I don't know if they can trigger it or not. But I don't want to risk him getting worse.
What would you like all of us to know? Please if you see a mom with a screaming child, or a child who is miss behaving and going wild.....or shaking his head violently, or flapping his hands, or flicking his fingers or ears, or moving his head and eyes in strange ways....or sitting at the table with headphones and sunglasses on----don't stare, don't judge, ask her if she'd like some help.....but please do not judge her. Just the other day there was a family who judge me as a bad mom and Brayden as a misfit because he was eating cake with his hands and squishing it for the sensory input. I wanted to actually have a meal so I let him. I carry cards with me that state what Autism is. My mom went back in and gave them a card----and a mouthful. I was in a sit down fancy restaurant on his b;day last year and he was shaking his head so hard he whacked it really hard on a table and left a huge place on it. Everyone around us just sat and stared at us and watched us like we were some kind of circus freak show. The server came and asked if we wanted her to call for help. I have never felt so.....I don't know.....in my life. My son is wonderful and I am blessed with joys that moms of typical kids will never enjoy and will take for granted. NEVER EVER EVER EVER tell your kids to shut up. PLEASE! And Please never tell anyone who says their child isn't speaking that they are lucky or any other kind of stupid joke like that. I would LOVE it if Brayden asked me questions all day or talked all day long. I wouldn't tell him to shut up. I wouldn't tell him to hush or wait. I would enjoy every syllable that came out of his mouth!
I will be bringing over my board here in the next day, just wanted to give you guys a start on what i think will be alot of questions. Thanks for having us. I know I am super excited to learn more from some BTDT moms!
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  #8  
April 7th, 2008, 10:02 PM
soImarriedAnerd's Avatar Platinum Supermommy
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Thanks to everyone who has shared their stories so far!! I love reading them.
More questions i thought of....
1. What kind of testing is done to see if your child has autism and how severe?
2. What treatments/meds/diet helps with autism?
3. If I saw a mom having problems while out in public (autistic or not), what can i do that would help? (if i just went up and asked if they needed help would I scare the child more---can you tell I don't have kids yet)
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  #9  
April 8th, 2008, 09:17 AM
Tammyjh's Avatar Platinum Supermommy
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Quote:
Please tell us your story of autism....
A couple questions for you all...please add more if you would!
How old was DC?
Any other siblings have it?
What did you notice that made you think it? (or did the doctor/teacher say something)
What problems/challenges have you had with the medical community/insurance companies?
What type of support do you get?
What phase/level/severity is your child? (sorry i don't know what the differences are or how they are "ranked")
What if anything do you think caused your child's autism?
I read your comments about spectrum and then abbreviations like PPD-NOS....can someone explain all that?
Whats your thoughts on the vaccine-autism debate? (just your own personal view-no actually debating please )
What would you like all of us to know?
I will be bringing over my board here in the next day, just wanted to give you guys a start on what i think will be alot of questions. Thanks for having us. I know I am super excited to learn more from some BTDT moms![/b]
1. Dd has had many dx's leading up to her Asperger's dx...the formal dx of Asperger's didn't come until she was around 9 and depending on which specialist you talk to...some say Asperger's Syndrome and others say Nonverbal Learning Disorder. She is missing most of her right hemisphere due to brain surgery for seizures so her primary dx is brain injury. But, we feel Asperger's is in the family and that even without seizures and surgery, she may have had a few quirks but maybe not enough for a dx.

2. We don't notice that any of the siblings have this although they do have a few pieces of the puzzle. A few with sensory issues but nothing that would warrent an eval or dx of autism.

3. For us, we noticed dd having seizures before she was a day old and then many other dx's came from that and the eventual Asperger's at around 9

4. Medical community/insurance/mental health community issues........many many problems. I could fill a page with this one.lol. Pushy and self educated is what you have to be. I don't advocate starting out pushy unless the situation warrants it. By nature, I'm not pushy but you need to know who's a help and who's not.

5.Right now, we have a case manager who helps us locate services and avocate for dd. As of yesterday, we terminated our in home support services because they just were not helpful and as dd has medicaid, I won't waste the taxpayers $ on services that are pointless. Currently, she recieves OT and PT though school..and also has a pragmatics of speech group once a week. She sees a counselor once a week, and we're doing a short therapy (4 weeks) outside of school for problems she has with bladder control. We dont' want to start with meds but more or less to see if she can be retrained to "hold it". As her surgery left her with mild partial paralysis on one side of her body, we don't know how much of that affects her internally.

6.Rank of severity...hmmmm...not really sure on this one. Her last neuropsych exam didn't rank her severity of Asperger's but it did give her an overall IQ score and she fell into the low borderline range...a drop from when she was younger and in the low average To hear her speak, no one would ever guess how low her functioning really is becuase as speech skills are in the left brain, her articulation is excellent and she loves big words.

7.While we do think there is a genetic link to Asperger's Syndrome in my family, the severity of dd's problems were caused by cortical dysplasia and tuberous sclerosis...basically her brain did not develop normally before birth and test on brain tissue showed the tuberous sclerosis(which has strong ties to autism).

8.Looks like the others answered on the abbreviations .

9.I think there is a connection(vaccines)...especially those with a strong genetic predisposition.

10. I'm slighty opposite on Missica on the speaking issue. My dd is judged on her speech all the time and as she is so articulate, people assume that she is capable of much higher functioning than she really is. So, just as speech delays can "sometimes" indicate there is a learning disability, early speech and speech that develops quickly can be an indicator. My dd was the top reader and speller in her class for a long time but as is common with children with Nonverbal Learnind Disabilities...its a disorder that children often grow into instead of out of and may not be apparent until mid elem. grades. As dd has her medical issues, we were aware of this but trying to convince others in the medical community has been tough even though the research is out there and her evals shows her specific strengths and weaknesses. Great speech and articulation does not always equal intelligence. Not to say my dd isn't smart...she's good with facts and a lot of left brain skills. Her speech has nothing to do with her behavior, her ability to see the big picture, reasoning, empathy, mood regulation, etc...
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  #10  
April 8th, 2008, 10:25 AM
*Anna*'s Avatar Platinum Supermommy
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There is just so much about Autism I didn't know... thank you to all the moms who are sharing such stories and details about your DC. It really opens my eyes to what Autism is all about.
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  #11  
April 8th, 2008, 02:18 PM
Mjp121212's Avatar Platinum Supermommy
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1. What kind of testing is done to see if your child has autism and how severe? There are genetic tests and MRIs that can be done if certain causes are suspected. My son had an arena eval where he was evaluated by 2 psych's, a speecher, and an OT. They ask questions and observe. They did an ADOS which tests specific areas of development in a play activity setting. he's had a lot of labs ran to rule out other issues.

2. What treatments/meds/diet helps with autism? There's so many different treatment methods. Some work for some great and horrible with others. We've done TEACHH, and ABA, Discrete Trial....I jsut take bits of them all and intertwine them the way we need. Meds---there's tons of supplements and some chose to treat symptoms with specific meds for anxiety or mood stabalizers. Diets----pick one LOL Gluten free/ Casein Free is popular and works for many, eliminating certains carbs works for others, the get rid of yeast diet, all organics. WE don't do any of those anymore as they get VERY expensive and didn't really work for DS. The most important thing to remember is to get it started early. The earlier the better!

3. If I saw a mom having problems while out in public (autistic or not), what can i do that would help? (if i just went up and asked if they needed help would I scare the child more---can you tell I don't have kids yet) I don't know about everyone else but if it was me: If someone jsut came up to me while Brady was in a total meltdown and just asked me if there was anything she could do to help me I'd be happy. It would let me know there are people out there with a heart and not just eyes. And if that same person saw others staring at us tell them to stop. I was at a store and Brayden wouldn't put his feet throught the slots on the cart. Ic ouldn't lift him up, he put them both through the one side and got stuck. EVERYONE in the store stood there laughing at me. It was at Christmas. The place was packed and there was at least 15 people up front. When I FINALLY got him straightened out---he couldnt' comprehend take out your feet and fix them----one lady working there asked sarcastically if I needed help. I said yes, 5 minutes ago when you thought we were funny.

Something else: A lot of these kids get fussy and uneasy in store. If you see a mom with a kid who is crying or she is constanty shushing and telling that kid that they will be out of there soon, yada yada, let them cut line. I can't count the number of times I've been in line with a screaming Brayden with 1 or 2 items and the person in front of me has a cart load and they make us wait. Little things like that really make a difference
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  #12  
April 8th, 2008, 04:17 PM
Tammyjh's Avatar Platinum Supermommy
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Quote:
Thanks to everyone who has shared their stories so far!! I love reading them.
More questions i thought of....
1. What kind of testing is done to see if your child has autism and how severe?
2. What treatments/meds/diet helps with autism?
3. If I saw a mom having problems while out in public (autistic or not), what can i do that would help? (if i just went up and asked if they needed help would I scare the child more---can you tell I don't have kids yet)[/b]
1. The testing depends on where you go and who you see. One is called The Australian Scale and was used for my dd.
http://www.udel.edu/bkirby/asperger/asperg...aleAttwood.html
Here's also a page on NLD and the neuropsychological exam is detailed there a long with other assessments
http://www.nldontheweb.org/assessment.htm
The neuropsych can be lengthy....taking anywhere from 6 hours to 2 or 3 days. My dd's last one a yr. ago took about 8 hours.

2. There are treatments used for the symptom some people with autism have. When my dd was younger we tried to desensitize her a bit with the sensory issues such as brushing her skin with different textures. As she has physical disabilities due to surgery, she had PT and OT along with a brace for her leg and a splint for her arm/hand. She's continued with the OT and PT and she also has a pragmatics of speech group. She's in special ed. so they're working social skills into her day and also working on daily living skills...taking weekly trips out in the community to go to the bank, the post office, making purchases at the store, etc. A lot of the sensory stuff started to disappear a bit as she got older. She's still sensitive to some sounds, textures, and tastes but she doesn't go into screaming fits anymore...thankfully We've seen a lot of counselors/psychologists/psychiatrists with her as she has a lot of trouble with mood regulation. We've tried some meds with little degree of success she's med free for now. She's had some hospitalizations for depression and we recently finished up with an in home support program. Puberty hit her pretty hard and sent her into an emotional tailspin. Things seem to be calming a bit now so currently, we're with a counselor and case manager and discussing possibly going back to neurology. We did do a short support group program for girls who have Asperger's but it was only a six week program in which only 2 other girls participated. We live rural and community support is limited. We're also working with our case manager to find some social outlets this summer.

3. Out in public, I don't mind if anyone asks me questions....I'm more than happy to answer although it might be a bit difficult for me to answer. It may or may not impact dd's meltdown...if she's having one. I'm used to people staring and most of the time, it doesn't bother me. If I saw someone in some of my situations, I would probably stare too . Certain comments, I can usually do without and like Missica mentioned, its hard when you feel you and your childs undesireable behavior are the source of amusment for other people. But I can feel that way with my other kids too...its just that dd is more extreme than they are.

And you know, there probably isn't anything anyone could do to help when we're in the middle of a "situation" but the fact that someone has been kind enough to ask can give a stressed parent a little boost of renewed energy for the situation

Sorry if this is jumbled, I am a little distracted as the kids are all going in different directions right now
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  #13  
April 9th, 2008, 10:02 AM
soImarriedAnerd's Avatar Platinum Supermommy
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How did you first react to the diagnosis of Autism?
How did your SO and other children react?
Do you and your SO agree on the "ways" you each treat that child?
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  #14  
April 14th, 2008, 07:58 PM
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Thanks so much mamas for replying and taking the time!! Anna was right when she said it was a real eye opener to Austism.
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  #15  
April 14th, 2008, 08:47 PM
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How did you first react to the diagnosis of Autism? By the time we had the actual diagnosis, about 3 months after his doctor brought it up, it was just a formality and pretty much what I expected. When it was first suggested to me to have him evaluated, it was like I had been blind and someone gave me glasses - all of a sudden i could see it all clearly, all the little things I had explained away, since he was an infant. It did not really come as a surprise in one sense, but in another sense, I was surprised that I never saw it before that point.
How did your SO and other children react? My hubby reacted the same as I. Outwardly he was a little more disappointed - I kept a brave face. Inwardly I grieved for the future I had imagined for him. Andy was more vocal about that. We both took it pretty well. We have friends who work with autistics so we both know it's not the end of the world, just an adjustment The other kids weren't fazed at all, basically now they have a reason they can give their friends about why their brother is the way he is. They occasionally get impatient with him and say they wish he didn't have autism but not any different than they might say I wish i didn't have a baby sister who messed my lego or I wish I didn't have to go to bed now... just mild annoyance not with any real anger.
Do you and your SO agree on the "ways" you each treat that child? Pretty much. He thinks I baby Gus a little too much, and he's right, and I think he could be a little more lenient with him, but then again I also appreciate that his approach is different than mine, but not wrong - we balance each other and we agree on the big things.
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  #16  
April 14th, 2008, 08:51 PM
Alison81's Avatar Platinum Supermommy
Join Date: Sep 2005
Location: New York
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Thanks everyone. I am glad to see so many of you don't believe vaccines cause autism. I work at a school for autistic children, and from what I've seen, I know it can't cause it. Some children were diagnosed as autistic, so the parents didn't vaccinate siblings, and the siblings have autism, so it's either just a coincidence, or vaccines don't cause autism. I think it's genetic/biological/environmental, a combination, not necessarily just one factor.

Also, I have a question. Did any of you have trouble getting a Dx of autism, or an autism spectrum disorder?

I ask because I am pretty sure my DD is on the spectrum, but very mildly. She has a lot of "odd" behaviors. Hand flapping and jumping when she is excited, playing with her hands (particularly if she's stressed out or anxious), she has never been completely potty trained and she's 4 now, she has meltdowns when she's overstimulated, talks extremely loud, and her gross motor skills have always been behind. And the big one for me is that she is often in her own world, and oblivious to other kids playing, she doesn't want to join in. I work with autistic kids, I know the signs, but I can't find a doctor who will listen because she is always PERFECT at the doctor's. She even went to a developmental specialist, and she was right on developmentally, but I still can't shake the feeling that something is not right. She is very smart, but her "odd" behaviors really get in the way at times.
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  #17  
April 14th, 2008, 11:15 PM
picklesmama's Avatar <;,><
Join Date: Apr 2006
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Quote:
Thanks everyone. I am glad to see so many of you don't believe vaccines cause autism. I work at a school for autistic children, and from what I've seen, I know it can't cause it. Some children were diagnosed as autistic, so the parents didn't vaccinate siblings, and the siblings have autism, so it's either just a coincidence, or vaccines don't cause autism. I think it's genetic/biological/environmental, a combination, not necessarily just one factor.

Also, I have a question. Did any of you have trouble getting a Dx of autism, or an autism spectrum disorder?

I ask because I am pretty sure my DD is on the spectrum, but very mildly. She has a lot of "odd" behaviors. Hand flapping and jumping when she is excited, playing with her hands (particularly if she's stressed out or anxious), she has never been completely potty trained and she's 4 now, she has meltdowns when she's overstimulated, talks extremely loud, and her gross motor skills have always been behind. And the big one for me is that she is often in her own world, and oblivious to other kids playing, she doesn't want to join in. I work with autistic kids, I know the signs, but I can't find a doctor who will listen because she is always PERFECT at the doctor's. She even went to a developmental specialist, and she was right on developmentally, but I still can't shake the feeling that something is not right. She is very smart, but her "odd" behaviors really get in the way at times.[/b]
I was worried that Gus would behave too "normal" at his evaluation as well! I wrote a report listing all his behaviour, and gave that to the developmental specialist when we got there. I listed everyhting I could think of. Maybe you could keep a little journal of your daughter's behaviour, maybe even get some video of her when she is acting odd or having a meltdown.
If you think something is wrong, keep pushing, ask for referrals, 2nd, 3rd opinions. No harm can come from you being wrong in the long run, but if you are right and nothing is done for her, she loses.
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