I feel like I screwed up | Autism PDD

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Oh you could always say something like - its overdiagnosed nowadays -

Its a great situation you are in ! In every way ! - Dont feel guilty

as a parent. When DD was first diagnosed earlier this year I was SO overwhelmed. I told a few gals that I know in my Mom's group---mainly because their kids had a diagnosis as well. Now I wish that I hadn't. My DD is doing SO well that I'm not even sure she would get a diagnosis if we took her in now. She hardly does any of the things that tipped us off to an ASD in the first place. She still has a major speech delay however she is making HUGE progress. She is pointing, sharing things with me, saying Hi to strangers, playing with other kids, she doesn't spin anymore, etc. To me she seems more ADD/ADHD than ASD. However it's too early for her to be diagnosed.

anyway, I feel guilty for telling the people that I did. I would hope that they would hold what I told them in confidence, like I asked them to at the time. I just want my sweet girl to be given a chance! I also want to make sure I'm handling this whole thing the right way.

I have thought for quite a while on how to respond to your post.

I am glad for you that your daughter is doing so well. I would like to say that instead of feeling like you "screwed up" perhaps you should just focus on how blessed you are that she is doing so well and not worry about what people will think if god forbid they think she was ASD.

This is a place where a lot of us come for support and many of us are coming to terms with our childrens Autism everyday in so many ways and on so many levels. I know for my part I am trying hard to show the world how very proud I am of my son despite, and inspite of and because of his autism.

If you feel more comfortable with having your daughters issues be under the ADHD/eADD label then perhaps you can also find support on those websites that deal with those issues.

I know there is a stigma with Autism and I know that we all want to protect our children from everything we can, but I can safely say that for most of us the Autism is here to stay. Autism is here to stay in the WORLD. We cannot and should never let what people think affect us or our children. The world has to get used to us and embrace us.

Think of how wonderfull it is that you can say that whatever ASD issues she had have resolved, instead of worrying about whether people will label her ASD or not. Her behaviour and progress will speak for itself.

Try not to feel guilty.  You had a need for a support and a place to talk about what you're going through.  If you hadn't gotten that support, maybe your daughter wouldn't have come as far as she did -- if we're stressed out or emotionally distraught, it takes energy away that we could be putting into our children.

 

I am not ashamed by ANY means. I LOVE my DD and love everything she does and stands for. This board has been wonderful outlet for me and I'm sorry if I ticked anyone off by my post.

However, I do feel that people do pass judgement, especially on children. When my DD was first diagnosed my MIL even told me "well you have to greatly lower your expectations of her now and your hopes and dreams for her". YES, she said that! I was at a club I belong too and NONE of them know about DD and one of the gals was saying that her DS was showing ASD tendencies. One of the girls there laughed and said to her "oh GOOD LORD don't get an ASD label, you'll child will be done for".

Sooooooo that is why I have the hesitations that I do. Most people know that my DD is in therapy but not many know why.

Again, I truly am sorry if I upset anyone by my post. I was just wondering if anyone had or has been in a similiar situation.

Just be glad for what you have.  The women at the club needs to be confronted and educated.  Letting a comment like that go seems to send the message it is ok.  It is not ok with me. [QUOTE=JanisA] Just be glad for what you have.  The women at the club needs to be confronted and educated.  Letting a comment like that go seems to send the message it is ok.  It is not ok with me.[/QUOTE]

What's really sad is that she is an elementary school teacher. I was not in the mood to fight that night, nor was it the proper place.

I am happy for what I have. I have two beautiful children that light up my life every day!

Unfortunately we live in an area where everyone strives to be perfect. I don't or can't by any means! We were VERY close to relocating but ended up not doing so because our services are way too good here.

I know that DD will always have an ASD and that is doesn't just "go away". It's just the people around here that I"m still trying to figure out how to navigate with her having an ASD. I just want to do what's best for my sweet DD.

It doesn't much what everyone else tells you to do with yor own child. Whether it's your MIL or your friends, just smile politely and think to yourself-how sad they think that. It doesn't reflect on you or your child.

When it is all said and done, and she is out on her own, no one can argue the person she has become is because of you!

I have gotten a few ignorant comments to the effect that my son now was
in a group for which many things in life were just not going to happen.
And at first that really hurt and I felt bad for my son ...and myself. But at
this point -honestly- I feel bad for the people that think that way.
Because they do not understand what love or dignity or the human
experience is about.
I hope your dd can achieve anything in life she wants asd or adhd or not.
But forget about those silly close-minded people who think lesser of
anyone because of it. You know better now. Just stand up straight and let
them know that they are ignorant.

I do understand what everyone here is posting about it shouldn't matter what others are saying. However, when it comes right down to it - it does matter to me and it often hurts. Maybe I will get to a place where it will not bother me as much, but I'm not there yet.

My ds is very mild and completely mainstreamed in kindergarten. I think he will do fine. I don't often tell people about his autism unless they NEED to know - as in, they will be in charge of him for something. I'm not ashamed of his autism, but people are judgmental, we just moved to a new town so I don't know how people's attitudes are, and I like to feel my way around before I go telling everyone and anyone about his diagnosis. Because he is so mild, he mostly passes for NT when we are out in public. I was told by a mom before we got a diagnosis that I should think long and hard about who I tell about his autism. Because when he got older, if everyone already knew - then he wouldn't have a choice about who to tell. And, our dev ped said that he was so mild that the label might eventually be taken off him. I don't think that is the case, but that is just to give you an idea. Our dev ped is very pro-active and he wants to get kids help and not do a "wait and see" approach since early intervention with ASD is so key.

Anyway, that is why I have been so cautious about who I tell. That way, if the label is ever taken off or ds gets to the point where he wants to be in charge of deciding who he tells - he will have that opportunity. I also don't want him to use his label as an excuse. He has Restless Legs Syndrome and he was trying to use that as an excuse for why he couldn't make his bed or pick up his dirty clothes and put them in the laundry basket!

I am a former social worker so I feel somewhat hypocritical about not getting out there and educating everyone about autism. I still do that but don't tell them necessarily that my ds has it. I will probably be lambasted for that, but it is our choice and it is what I feel is best for my ds at this point. We may change our minds at some point - or he may (but at least he will have the opportunity to do so).

When there is a board that has such a wide range of abilities for our kids - there is always bound to be hurt feelings. It is hard for us to fathom how life is when a different child with autism has so different behaviors/issues from ours sometimes. No one is in another person's situation so I hope we can all try not to judge each other. I hope I'm not coming across as doing that in this post either.

The reality is that our children will be judged differently as soon as you tell people about their ASD label. Right now, most people don't think of my son as ASD, they think of him as pretty talkative and a little quirky. We've worked long and hard to get where he is right now, but he was on the mild end to begin with. We will continue to work long and hard. Once he gets to an age where we feel it is appropriate for him to know about his autism (I'm thinking around age 8 or so - basically when he starts asking about why he is different) then we will re-evaluate where we are. I think he gets treated differently when people know about his autism - not always, but most of the time.

Again, we're all in different situations here. I'm happy for the original poster that your daughter is doing so well. She may have been mis-diagnosed. In that case, it probalby is wise for you to find support on a board that deals with the issues your daughter does have. But in the meantime, I welcome you here for support that you need!

Hi hun

god bless you

 at the end of the day she does have ASD

no matter what happens in her life

i have as

but i have learnt how to act how to talk how to respond to people and the enviroment

it is not that i am cured or have outgrown the disorder it is that i have adapted and fitted

the more we understand the more we adapt or role play

i have done it for many years  and still do

please dont be ashamed

you are a good mum

shell

I completely got what you were saying, twinzrock! I did not for one second think that you were one bit ashamed of ever having the ASD DX. People do tend to compair, I do it myself. It is human nature. I love Abby with all my heart. I am not ashamed at all that she is on the spectrum. But I am not going to sit and act like every once and awhile I wish I did not have to go the extra mile. Things could always be worse. Abby is pretty verbal mixed with some Jargon and she is not shy. So, in some of her classes she is talking alot more then other kids , some of it is hard to understand, some of it not. But I have had comments made to me with what I think with a little bit of Tude behind like, Wow she talks really well. Almost like she does not belong there. I just shrug it off.

Regardless, in my opinion some of the symptoms and quirks on the ADD and ADHD are not that far off From ASD you are doing just fine.

Mommy to Abby Grace 3yrs old /PDD/NOSLACEYONE39330.5317592593Im sying this again and I dont care how busy I look online to anyone these days as I spread the word about Smith-Magenis Syndrome.  What caught my interests is how you seem to think she is improving.  Go to www.prisms.org and check it out. My son was diagnosed with PDD-NOS at  7yr. old. We received his true diaagnosis last yr. in August. This syndrome acts  so much like ADS,PDD and the like that you have to look into it and rule it out.  These kids DO improve as they get older. Not 100% dont get me wrong but as the yrs. have passed I NEVER thought Id see my child where he is today. I have lived with Autism all my life--my brother is 37 yrs. old and has never been given an actual diagnosis. He presents as anhigh functioning Autistic adult.  You have nothing to lose. This is a loodtest at the geneticist called a "FSH" test or a fish test. It detectsn a deletion on the 17 th chromosome that causes all of these extreme similarities.  Hope you check it out!

I worried about the same thing for two reasons. The boys seem to be borderline, one more so then the other. I worry that by having an ASD diagnosis it might effect things like medical insurance in the future. Autism isn't curable, what if he has a hard time getting medical insurance. Also the school, with the ASD diagnsis they could lower the bar, and by lowering the bar say they don't need this or that service anymore because they are doing as well as can be expected. That may be what the teacher was talking about. Not sure. I did decide to go ahead with the ASD diagnosis because our current insurance will pay for ASD related services, ABA and speech, and they would not pay when they were diagnosed developmentally delayed. So I figure it is better for them. I have not told the school, not sure if I will. I might let them come to their own conclusions, we'll see when we have to deal with kinder and 1st grade. We have dealt with our share of comments from DH's colleagues and some friends and family. I have also been told that we will have to lower the bar and how dissapointing it must be. DH and I just looked at each other like what are you talking about they were 2 autism was first mentioned. I wasn't lowering anything at age 2, this woman had never even met my kids. DH gets comments at work, "Your life must be so stressful you know how your boys are." His response was no I don't why don't you tell me since you seem to be an expert on them even though you have never met them. I tell ya, some people.  

In southern Ca. if you want services it is better to have a autism/dx than a
pdd-nos dx. ADD and ADHD does not garner very many services here.
By the way, my ABA agency actually has ADD/ADHD clients whose parents
usually pay privately for these services. My 5yr old does very well and his
dx is pretty accurate. I would not want to lose the dx because I worry
about the middle school years. I want to be able to get the support,
should he need it.
I am also searching out a social skills group right now. I personally never
offer too much information to those that I do not know well. I am private
about my personal life, finances, religious beliefs,politics so it goes
without saying that my medical condition or my childs condition is private
as well. All his teachers, coaches, any adult who watches him all know his
dx. Should he ever go to another childs house by himself on a playdate,
that parent has been informed as well.
I support autism within my community. Always have before I had a child
with autism. Everyone handles stuff differently. My son was at a school
last year where another child who clearly had issues did not get the
interventions he needed. The other Mom was in denial. The director
wanted me to talk to the other Mom, but she never did.

I hear what you're saying Twinzrock. 

I'm very open about ASD and I have 2 nonverbal kids who have obvious ASD issues.  So being open and explaining ASD is a much better alternative to ppl's speculation or confusion in trying to engage them. 

That being said I also have a dd who's borderline ASD... pdd-nos and I do not generally share that with anyone other than physicians and educators (and anonymously on the board) and a few members of our school age special needs parents group.  Not even my dad or MIL know she has a dx mostly because they wouldn't see the issues and I don't want to have to justify it ( I had enough trouble with nonverbal kids

My dd does know she has ASD and it makes it hard for her to understand some things.  She also readily accepts it and perhaps has told ppl herself.  I believe though it will come up in the future as the gap widens with peers. 

Matthew to most that just meet him think he's so cute and he's not THAT
differnt how can he have ASD. I tell many people because his ASD
sometimes makes him look like he doesn't care or he's being rude when
in reality they didn't get his attention so therefore didn't hear them. I also
tell them because many people act scared of ASD. I want them to see that
it's a broad sprectrum and our kids are cute and sweet like most NT. It
also gives me a chance to educate people :) Not that I know tons but
more than the general public, and I know that if I knew more before I
would have been less puzzled. I think instead of keeping it all secret and
continue on th is path of the public having astigmatism, maybe if we as
ASD parents are more open to talk, even about the hard stufff, then a less
and less population will haev these negative feelings. Most negative
emotions I think are made of fear nad if they knew they had nothing to
fear in our ASD kids amybe the world would be easier for our kids.
Anway, I hear amny people at first give me the look like he was
misdiagnosed but after they spend some time with him they know it's
right. You are doing the best you can and you love your DD that makes
you a great mom :)
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