Do any of you think ( obsess) about the

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Registered: 09-16-2005
Do any of you think ( obsess) about the
8
Sun, 10-09-2005 - 5:43pm

future and what it holds for you PDD, or AS kids?

My DD is only 2 - -not even dx yet - - and she is awesome, fun, sweet, smart, loving, friendly, social, etc..but I find myself constantly worrying what her ( and selfishly, our) future is going to be like. For instance - around the corner from us - is a girl, maybe 12 or so who CONSTANTLY, ( and I mean, rain, sleet, snow, heat, whatever) sits in a chair on her lawn twiddling straws. She keeps a large box of straws next to her and sits out ther I'd say about 6 hours at least a day. I so fear that.

I fear that my DD will be unable to learn anything (her biggest problem now is comprehension) and will not ever be able to care for herself. Is that really nuts to be thinking like this so early? I mean, by nature, I am a worrier, probably a bit on the OCD side myself.

I'm not even really afraid of a dx - whatever it is - she is still the same sweet, adorable little girl with the biggest smile in the world who melts my heart daily, I just worry about life in general.

Obviously, if she has AS or PDD or something - it is very mild as of right now - everyone ( all her EI teachers and psy's) say she shows no significant red flags, BUT, I see some. I guess my question is - if she does turn out to be PDD - and mild, do we have a shot at a normal life? Will she be ok?

TIA - I know you are prpbably tired of my quuestions. I can't wait till friday - - she is going for her eval with the Dev ped.

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Registered: 01-19-2005
Sun, 10-09-2005 - 6:20pm

I worry about this all the time, and I am also what my MIL calls "a creative worrier"! But seriously, it is hard. Eric was diagnosed pretty early, about 18 mos. and I know we are doing the best for him that we can. But I do still wonder what the future holds. I know he can learn. I know he has lots of strengths. I know he can be charming. And I'm exaggerating, but with Eric, I feel he might be able to learn physics, but won't be able to drive a car or remember to eat. That probably sounds crazy, but it's how I feel.

In another thread here, I posted about a Nightline Show last Friday on adults with autism. The show was really great but gave me pause, even though the folks featured were older than our kids, maybe not as high functioning, and did not have the benefit of EIP and other things we have been able to give our kids. It still really made me think.

Even so, I alternate between having so much hope and also a cautious attitude that we need to be prepared for less than we had hoped. We just don't know yet, and won't for a long time, but in our case, we need to think about it.

Because my DH and I are in our 40's and have aging parents, we are also worried about being the "sandwich generation" where we will be caring for our small child, who has issues, and his adorable loving grandparents, at the same time. Fortunately the grands, (and they are grand!)are so far in good health, but they are in or nearing their 70's. We have to be realistic. I am really worried about how I am going to balance the needs of the older with the younger, and I only have one child. This is a reason we will not have another, although we would like to.

But I know that is not your worry. Still, I totally understand your fears. I have them too. All the time.

I think it's ok though. Plus, you know what I am learning, that "normal" life is just never what you expect and that our journey is still to be played out. Maybe it will be harder, but maybe it will be richer although in a different way than I expected.

I certainly don't know, but like Dory in one of my son's favorite movies, "Finding Nemo" we take the attitude of "just keep swimming, swimming, swimming."

I think you and I are like Nemo's dad Marlin, but Nemo had a "lucky fin" and look how great he did. (Hope this doesn't sound too dumb. But I've seen "Nemo" and "Toy Story" about a million times. Guess I had to project some meaning into it! Sometimes I wonder if the people at Pixar have a certain sensitivity for special needs. One of our favorite parts of "Toy Story" is when all Sid's toys get together to help Buzz and Woody. Their "disabilities" certainly didn't hold them back!)

Anyway, I digress. But you are not alone. Worry, but keep the faith too!

Hugs and I'll be thinking of you on Friday.

Katherine

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Registered: 02-24-2004
Sun, 10-09-2005 - 6:36pm

That's ok, I'm a worrier too. I'm always thinking and worrying. Nathan was dx'd at age 5. When I look back when he was younger, I remember how he would look at me with a blank stare, and wouldn't comprehend what I was saying to him. I remember that he wasn't talking at the "normal" age. How his behavior was different and hard to understand.

But as time went by, he learned new skills. Just as his brother did, just not at the same pace. Somethings were just harder to learn, took more time and more patience. On his part and on mine!LOL There are still some skills that are hard for him, but I'm learning to take each day as it comes. And just KEEP WORKING WITH HIM. I've seen his improvements. So I DO know that with time, he does learn.

When I would read to him. He didn't like it. Wouldn't listen, not paying attention. He would focus on odd things on the books. A paper that was ripped, or certain shapes or numbers. I just kept reading to him. A little at a time, not everyday, took it slow. Now he listens to me read, even answering some questions that I ask him. AND he's reading to me too now.

It's hard not to worry, and not to obsess about the future. I have to keep reminding myself everything that he's learned how to do. And remember....that he will continue to learn.

I'll be thinking of you Friday, let us know how it goes!

Michelle

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Registered: 03-26-2003
Sun, 10-09-2005 - 6:41pm

Well,

Sure we all worry but, I have kind of come out the other side or I am at least 1/2 way there.

When Cait (11) was 3-4 I thought I would never have a real conversation with her. I thought she would never be able to do things with typical peers. I thought she would never be independent.

HA! Was I wrong! She has amazed me in numerous ways. Not only have we had conversations, she talks my ear off and is a great buddy to have. OK, so most of them are about animals or her interests but I can get her to have other conversations too. That is if I can get her pre-teen mind in the mood to talk to mom!

She has been mainstreamed since kindergarten. She does have IEP supports but so far is getting all A's and B's in 6th grade. She is in a specified Asperger's program this year for support but is mainstreamed for all academics though she does have aide support. She even had her first summer job last summer taking care of the neighbors cat.

It isn't all roses that is for sure, but the thing is you never know how far they can go. For instance, on the summer job she needed more support from me than a non-AS child and infact my 7 yo NT dd often went to help her, but it was a great learning experience for how to have a job. I still don't know. As of right now it seems that both my aspies will need some level of support through out thier life but they have surprised me so far, I don't doubt that they will continue to surprise me.

I plan realistically and hope for the stars, much like other parents. I fully expect that they will have jobs, live independently and possibly need some support to organize, make sure bills are paid, and with job skills. Perhaps even a job coach at first and some support in college. But there are actually programs in college for young adults with special needs including autism and aspergers.

Our plan currently is to begin having the kids volunteer at age 12 in programs for people with disabilities. The hippotherapy place we go to is great. There they will understand the kids differences and teach them social job skills they will need. They will likely attend community college near home for the first couple years where there is support for SN kids and learn how to do the college thing. Perhaps one class at a time with a part time job. I have them involved in the state department of developmental disabilities already so that when they are that age they can access a job coach to learn more job skills so they can keep jobs. Then after community college we have a state university nearby they can go to that also has supports. Meanwhile they will likely live at home and I will teach them how to manage a checkbook, shop and maintain a home. If we need to we will build an appartment onto the house for DH and I and give the kids the house. Meanwhile getting them supports of a casemanager through the regional centers so they will have support of someone keeping an eye on them after we are gone.

That is my realistic plan. If they amaze me, which they very well may, I will adjust the plan as needed. The 2 main things is making sure they have enough skills to hold down a job they love and keep house, and making sure there are supports in place for them should they need it.

Renee (but na, I don't obsess on it, anymore)

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Registered: 06-25-2003
Sun, 10-09-2005 - 6:58pm

I used to, but not really anymore.

When we started done this path, Peter was very severely delayed. At one point, I was told he was borderline Mentally Retarded (MR). He didn't develop functional language until 4¼, and we had a lot of difficulties dealing with him in public. Some very simple things; eating out, attending group functions, buying him new shoes or getting a haircut were an absolute nightmare for us.

Fast forward four years: Peter is calm, bright, funny. He is at or approaching grade level in most subjects. He will probably be above grade level in math and science before the school year is through. He is nowhere NEAR mentally retarded. It's just another 'mistake' they made.

I'm not worried about the future anymore, In just a few short years, he as beaten all the dire predictions. Nobody has a crystal ball, and I am quite angry when I look back at some of the BS lines *some* so-called "professionals" tried to feed me. With very young kids, they just don't *know* and they should admit that, but there seems to be some sort of unwritten rule amongst them not to.

Ya know, there are a lot of gifts which come with this "disability". Often our kids obesessions can become their professions. And our kids are often obsessed with pretty lucrative things: math, science, biology, cosmology, physics, computers, electronics, animals etc. And their single mindedness can mean they do extremely well with these fields.

I also know some adults, who I am pretty sure have AS, and they have full and functional lives. Two of them are brilliant, and have become world-class experts in their chosen fields (both work in computers). One is married (to a much younger woman he met on-line LOL), and the other is a millionaire, who owns property on three continents.

I'm not worried anymore. I am gving my kids the best foundation I possibly can. I know they are bright, lovable and funny and there are children out there who will see that, too -in twenty or thirty years time. ;)

-Paula

-Paula

visit my blog at www.onesickmother.com
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Registered: 04-11-2003
Sun, 10-09-2005 - 7:25pm

I only worry about 1 yr in advance, lol. Really.

Samantha

Samantha
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Registered: 10-03-2004
Sun, 10-09-2005 - 9:26pm

It is hard to think much farther in advance than the next 3 - 6 months, and I have really learned NOT to predict anything! My son's leaps and growth, difficulties and challenges, are certainly NOT on any schedule that I get to know about in advance, which makes trying to imagine how far he will have come as a grownup pretty hard to do.

That being said, he is doing so very well, and as his therapists all remind me often, he hasn't plateaued ... and while he is still behind NT children his age, if he keeps going the way he is, eventually he will catch up in his own way. There is always hope. He will no doubt remain unusual, listening to a different drummer, can't imagine that part of him changing or me wanting it to!

That does not mean we will leave him without resources should he need assistance in independence as an adult, but we are also not assuming he will need that. I also believe that this is the bottom line reality for every parent, even those of NT kids. Life is seriously unpredictable.

Anyways, I'm sure I can safely say that we all understand your worry. I practise putting the worry aside whenever it threatens to rear it's ugly head, a mental discipline exercise, as there is nothing to be gained by worrying and I need my full mental energy for other more immediate needs. I just don't have alot of spare minutes in the day dealing with the here and now to worry too far down the road.

Don't know if that helps at all...

yours,

Sara
ilovemalcolm

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Registered: 05-30-2005
Mon, 10-10-2005 - 9:37am

Hi, there -- you know I posted three months ago with the exact same question. My son is 2 and has been since diagnosed with PDD -- apparently a more precise dx will be given in a follow-up evaluation. My money is on PDD-NOS. And, yes, I am worried all the time. Some days he seems like a totally typical 2 year old boy, other days he is sooooo autistic. I worry about everything -- I worry about raising him in this small town where there aren't as many places to blend or tons of resources for autistic kids, I worry about him starting preschool next year, I worry about him at his next play date. And I'm a big worrier as it is, so this is truly hell for me.
But then all of his therapists tell me how great he is doing, how smart he seems to be, how we will see big changes in the next year. So I'm trying to look a year ahead only. When I think about this time last year, he has come so far. So if that keeps happening, I know in my heart of hearts he will be fine and will very likely be indistinguishable from his peers. I know you are really upset, and for good reason. But to tell you the truth, from the descriptions you give of your daughter, she has so many positives that, if she is surprisingly on the spectrum, she is very high-functioning and will probably be just fine. Just hang in there until Friday. Take care of yourself.

Kellie

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Registered: 03-26-2003
Mon, 10-10-2005 - 9:56am

I do want to say one thing. I think it is important to think ahead and plan but appropriate to the age.

With a toddler I think you focus on the therapy at hand and as far into the future as thier preschool program. What is available? What will be best to help them and thier particular needs? Then maybe even as far as kindergarten but that isn't neccessary. Do you have a good program, etc. Sometimes if you are not completely settled and considering moves anyway at that age then you can look around and move to the area where the most support would be nearby and if you are settled then you can get involved in the community near you and try to get the best supports for your child available by the time they reach that age. WHen Cait was in preschool I got her school to import a sensory clinic via a portable trailer by the time she enter elementary school (bummer we didn't stay to enjoy the fruits of our labor).

The reason why I am planning now for thier futures is because where they are at in life. My kids are not toddlers anymore. Currently Mike is in 4th and I am preparing to work to get the district to open a classroom appropriate for him so he doesn't have to go to a very small special ed school. Cait's 11, volunteering starts at 12. Where my kids are at in life I also have a better idea of how much support they may need when they are older. Though not completely but I have more of an idea now then I did at 2-4. So I am preparing them for that. I hope they are completely independent but getting them thier will take work and preparation. And I need to be prepared as well if they are not.

Raising ASD kids is a challenge, but not impossible. I do think it is important to try and plan ahead. I haven't started a special needs trust for the kids and can't decide if I need to or not. That is a tough one. I am still hoping they won't need that. But it is an important consideration. If you leave money for your SN kids in any significant amount that is not a SN trust it may affect thier ability to collect social security or access other supports.

Maybe I do obsess a bit, lol.

Renee

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