It's been a month now since the kids were diagnosed.

[rafiki]

.

[RamonaQ]

While I absolutely believe knowledge is power, perhaps a break from reading anout the diagnoses would be helpful? In the end, they are the same kids, and honestly like all kids, they just need to be loved and valued for who they are. And I would venture to say, that our special needs kids need even more love and knowing they are valued because the road for them is a lot more difficult. Likewise, for the parents.:)

 

You know, nobody knows the future. I certainly didn't realize how difficult having kids would be-nobody does. In the end, we get through it by just doing it, the day to day work. I think that is what it is like with special needs kids, not always knowing the future, but just doing the work of today.

 

And I say all this afterk dealing with a diagnosis for year, which btw when I read the report there are still times that I cry. I remember at some point I decided I could only fret for 5 min and grieve for another 5 each day.

 

The other thing I know is that nothing turns out so horrible as I imagine it in my head, and often things go more smoothly and even with moments of beauty. So perhaps things won't turn out so gloomy, I bet they won't.

 

Friends, coffee, something new--do something that makes you happy:grouphug:

[Paisley Hedgehog]

nm

[Guest]

Michele, please also remember that many of the books and predictions about how particular kids will do are based on a time when not many got early intervention or the wide variety of therapies that are available today. For instance, two of the classic books on nonverbal learning disorder (my dd carries that diagnosis as well as Asperger's) are incredibly grim reading. But they were written about adults who were never diagnosed at a young age and never given the therapies or accommodations they needed.

 

Newer books are beginning to take those things into account.

 

Kids on the spectrum have such a huge variety of outcomes, nobody can predict what they will be like as adults. But you are giving them the best chance for productive and satisfying lives first of all by loving them, second by homeschooling them and removing a huge stressor from what most spectrum kids face at public schools, however "good" they are, and third by getting them into therapy and finding out what accommodations you can make and how you can best work with them. That will make a huge difference in how they grow up and how their adult lives turn out.

[merry gardens]

I was hopeful this would bring answers and things would get easier. While I now have reasons behind what is going on, reality hit me like a ton of bricks Sunday that this is only the beginning for two of them. With EF in the single digits for my oldest and it being more difficult for ASD'ers to blend in the older they get it's just going to get harder for all of us. The NP's report said EF doesn't peak until young adult hood, so these kids grow into academic issues along with ADHD and Anxiety being cyclical and feeding off each other. Here I thought we were struggling now. My youngest (ASD) looks 2-3 years younger, so it doesn't stand out as much that he acts younger now. That changes in the upcoming years. I don't want to feel like I have to explain him. Aside from the therapies, which we are in the process of getting rolling, I have truly done what I can to get to this point. If I'm struggling now, how on earth am I going to do this? I know I don't have a choice, but I certainly don't see light at the end of this tunnel. Everything I read is just so darn gloomy.

:grouphug:

 

Michele, I read a lot of information about special education. I also enjoy children's literature. Children's literature is filled with interesting characters who could probably get all kinds lables from neuro-pychologists today. Huck Finn and Tom Sawyer--I wonder what your neuro-psych would write about them. Anne of Green Gables--that girl could talk and talk and talk...and the farmer who adopted her seems a bit autistic/asperger's to me. The boy from the Secret Garden--he seemed very autistic to me since he laid in bed all day with all kinds of illnesses and threw tantrums frequently. There's lots more. I know that it's fiction, but people from the past had stories to tell about children as they grew.

 

Your boys' stories are not yet finished, and you don't know the ending. I think your boys will be interesting people and after reading about everything you are doing for them, I think they will turn out fine. I read many of the posts and you seem like such a caring mother. I suggest that instead of all the "doom and gloom" reading that you've done lately, you should pick up a book that has a happy ending. :)

[Geo]

:grouphug:

 

Michele, I read a lot of information about special education. I also enjoy children's literature. Children's literature is filled with interesting characters who could probably get all kinds lables from neuro-pychologists today. Huck Finn and Tom Sawyer--I wonder what your neuro-psych would write about them. Anne of Green Gables--that girl could talk and talk and talk...and the farmer who adopted her seems a bit autistic/asperger's to me. The boy from the Secret Garden--he seemed very autistic to me since he laid in bed all day with all kinds of illnesses and threw tantrums frequently. There's lots more. I know that it's fiction, but people from the past had stories to tell about children as they grew.

 

Your boys' stories are not yet finished, and you don't know the ending. I think your boys will be interesting people and after reading about everything you are doing for them, I think they will turn out fine. I read many of the posts and you seem like such a caring mother. I suggest that instead of all the "doom and gloom" reading that you've done lately, you should pick up a book that has a happy ending. :)

 

:iagree:

...with ALL of this and the others! Thanks for the reminder. So many wonderful, wise women on these boards. What would I do without you all? Now, that's a gloomy picture!

[wapiti]

The gloomy times are the times to remind yourself of their considerable strengths, whatever they may be. Gifted strengths, even!

 

And FWIW, an argument could be made that it gets easier to blend in as they get older. College and adulthood are filled with people who may well have been labeled with something like ADHD or ASD. Some people succeed in spite of a diagnosis and some people succeed by harnessing the strengths that come with it. I just made that up, but hey, it sounds good, and it might even be true! Seriously, in DH's profession, there are a lot of extremely intelligent individuals, and we are often surprised that there are some not displaying any signs of a potential disorder. I'm laughing, but I'm not kidding (and this includes many of our dear friends, who are wildly successful - I could never have imagined the things one of them does to keep her adhd in check). That's just part of life for adults. It's probably impossible to imagine your kids as adults, but it's likely that they'll fit in more than they do now, when there aren't constant benchmarks of "normal" development. At least they'll have a chance to find their own niche, with like-minded individuals. Do you see any of yourself in your kids, even their weaknesses? And look at you, the mom that gives 1000%! Look how far they've come even recently, with the VT, for example. They're making progress, a little every day. You're doing a fantastic job, and there's nothing written in stone to say they don't have bright futures.

 

They're yours, and don't let someone else's opinion, especially someone who doesn't know them the way you do, take away the gleam you get in your eye when you're amazed at them and proud of who they are.

 

:grouphug:

[Joyofsixreboot]

I'm just going to tell you to save this thread and re-read it often. And remember the experts know things but they don't have a crystal ball.

[AmyinMD]

My son was only diagnosed 3 months ago and I still don't feel like I have a good treatment plan in place for him. I know we are doing as much as we can right now but I think I'm always going to feel like there are other things we should try.

 

When I get down about it I try to focus on all of the things my ds can do. There are many 3 year olds with ASD that do not talk at all. My ds may have extreme difficulty using words but he is verbal enough that I can often figure out what he's trying to say and really that is a wonderful gift. I have a friend with a 10 yo with ASD who is still completely nonverbal.

 

Most of my frustration right now is on the lack of coverage for ASD kids. Our policy covers very little and there are so many therapies I think would benefit ds but ruining our financial security to pay for them will not improve ds's quality of life either.

 

When I took my son to OT the other day his therapist was telling me about a boy with ASD she used to do therapy for. He's getting ready to graduate from high school and doing well. This boy couldn't speak at all until the age of 4.5 so it really gave me a lot of hope for my ds.