When to know....

[robin09]

Having a tough time here.. hoping someone can give me advice or just a shoulder to lean on.

DD14 has aspergers, ocd, sensory issues, sensitive to color dyes...and so on. You really wouldnt know to see her that she has any issues... unless you are with her for 5 minutes or more. She has very poor social skills, that are getting more and more noticeable. As she is getting older, you can see big differences between her and her peers. There are no friendships.

She got diagnosed at 5 years old, speech therapy started at 2, as she was not talking. She has had OT, PT, vision therapy, food therapy... Food issues are plenty, hates using utensils, doesnt realize how much she is putting in her mouth and wears her food, all over her face.

Up until now, I think we were fooling ourselves, that she would have a typical life with a couple of issues. But now, I think I need to take my blinders off, this child is so innocent, but not of her age. Her mental age I believe is closer to 7 years old... but she is sooo smart.

When do you know, that you need to put up certain protections, that your child will not be capable of handling life on her own? This last weekend we went to Hershey.. to see Sweet lights, because she enjoys the lights so much. She had a blast. Then we went to the Hershey factory, and got her picture taken and she became a "worker" there. The woman taking her picture, gave me a hug and said she has a nephew that has Down Syndrome, and has been working at Hershey for 12 years now. It has become apparent that our DD is "special" not just quirky... My heart is breaking, and I dont know what to do at this point...

 

[angelmom27]

Its a process to get through. I have three children with fragile x syndrome and one son has a diagnosis of auitsm too. It takes time and each stage of life is a new learning process. My oldest is 13 and we come across new experiences in life that we learn by all the time. I was like you for many yrs but after meeting many other FX families I have heard their stories and learned from them. The families with the adult age children help me a lot on understanding and seeing better what our future could possibly be like. FX is like autism so it is on a scale of how high or low the level of fuctioning will be.

I think it is wonderful when we come across those special people here on earth that understand and are willing to make moments like that extra special even for our special kids.

 

[bookwormde]

Robin,
First If you have been thinking she would have a "typical" life you have been deluding yourself, our kids are capable and deserve much more. 18YO and done, is not a NT concept that has any relevance to our kids, they develop much more "deeply" and therefore more slowly and at their own pace on so many fronts.
Do not confuse her innocence with her mental age, enjoy that you get "extra" years of that childhood innocence and do not rush it, but work to give her the tools she needs to make her own choices when the time is right for her.
Will she have a career, get married and have children, my experience is yes, but in her own time, likely not till after 30. Remember great things are worth waiting for, forget everyone else's timelines.
Helping her to be self aware of her genetics is the greatest support you can give her at this time, her gifts are amazing, she just needs to understand the trade offs, so she can make well informed choices.

 

[robin09]

Bookwormde, First off thankyou... You have made me come to terms many a time in the past. I dont know if delude is the right word or wrong. I have always "known" that Jenna was different, but I don't know if I actually "got it". If that makes sense.

I have never been at 18 and done kind of mom, my kids are 35, 27 year old twins and DD14. I seem to be thinking that we will have to take care of DD maybe forever and will be building for that. She definitely is developing slowly and so very childish in many ways, that it is hitting me square in my face. Her therapist has told me that I might have to rethink my goals for DD.

DD wants to work at Disney for the Animal Kingdom, and go to the disney College, as smart as she is, I just dont know.... She still can't print, fine motor controls are definitely lacking. She has always been an honor student. BUt school this year has definitely been a challenge....

So when do you know that you will always have to be there, mentally and physically for your child? To make sure, her face is clean, shoelaces tied... the correct clothes for the winter? To make sure she eats? I want her happy, but can she be happy forever playing with her dolls and for how long will she be accepted?

Robin,
First If you have been thinking she would have a "typical" life you have been deluding yourself, our kids are capable and deserve much more. 18YO and done, is not a NT concept that has any relevance to our kids, they develop much more "deeply" and therefore more slowly and at their own pace on so many fronts.
Do not confuse her innocence with her mental age, enjoy that you get "extra" years of that childhood innocence and do not rush it, but work to give her the tools she needs to make her own choices when the time is right for her.
Will she have a career, get married and have children, my experience is yes, but in her own time, likely not till after 30. Remember great things are worth waiting for, forget everyone else's timelines.
Helping her to be self aware of her genetics is the greatest support you can give her at this time, her gifts are amazing, she just needs to understand the trade offs, so she can make well informed choices.

 

[Piper]

One thing to remember is that children are "pushed" by society to grow up really fast. I am 67 years old and can remember my friends and I playing with dolls until we were about 14. Now children think it is babyish to play with them as young as 9 or 10.

My grandson is 9, my nephew 27 and my BIL is 46--all are on the spectrum. The 27 year old is not married and doesn't seem interested (but had a difficult time when his mother decided she didn't want to be married, my BIL is happily married to my sister (Has been for around 20 years.) Both my BILs brothers are on the spectrum--1 has been married for longer than BIL and the other never married. All are happy.

Often autistic children are very happy without what we see as "fitting in." My other 27 year old nephew grew up in the same home as his 27 year old step brother. The one was Mr Popular, married and has a baby. I really can't say that one was happier than the other.

It isn't easy to parent any child...often they have their own minds and "do their own thing." If you have gotten through several who are grown, you already know this. Just keep on doing your best and keep trying to meet your daughter's needs.

 

[WheeledTraveler]

I know plenty of folks with autism who seem like they'd never "grow up" and be independent who are (including folks who are non-verbal and/or seemed naive to their parents). A lot of it is looking for other ways to do things. If she can't print, she can type most things these days. It's definitely possible to work around. One thing I can say with my own experience with a combination of physical disabilities and some learning disabilities (I have severe executive functioning deficits so it's definitely something that causes problems in day-to-day life in ways that can be very problematic), is that many things require definitions of "independent" that don't look the same to NT and non-disabled folks. For me the best example is using PAs. My parents and I have had disagreements for years on my having a PA or similar come in and help when I'm on my own. They see it as being dependent on someone. I see it as helping my own independence because it allows me to not live with my parents and improves my quality of life compared to when I live on my own with no help (I like getting a chance to eat more than just microwavable meals sometimes ). This fall I ended up with an emergency hospital admission while they were on the other side of the country. Not only did that start to convince them because it helps their peace of mind when they travel, but I ended up with 2 weeks in a rehab hospital and the case worker there really helped them understand how a PA or similar would help me function on my own.

She's only 14. There's a huge amount that can change in the four years before the law says she's an adult. It might be worth talking with her school about programs out there to help her live within the NT world independently. I know of one school that had a whole program that was a year after high school where all it worked on was the things you need to live independently. I know it covered things like writing checks/balancing checkbooks, OT for working around the kitchen, and other similar things. It was available to any disabled student, IIRC. I know a friend who was at the school and had a physical disability said she wishes she'd taken the year to do it before going to college because it would have been helpful.

I do see a large part of it as learning to throw out the societal ideas of what's "important". I ended up having to stop working due to my physical health a couple years ago and it's amazingly hard to step outside of that idea that "you are what your job is". I actually have come to believe, though, that it's not a useful way to define people of any ability level. Saying someone is a doctor or lawyer says nothing about their personality or what's actually important to them. I'm far more interested in them as people than their jobs (stories from their job that they choose to tell say more about them than it does the job in many ways even if it seems job-centered).

 

[bookwormde]

Robin,
Believe me, my wife and I have the same concerns as you (and we are about you age), but because of my volunteer work I get a much broader perspective not only of our kids and their potential, but also the, although slow, changes that are occurring in society to began to understand how amazing our kids are and to begin to build structures outside the family in independent living opportunities, higher education supports, employment targeting that focus on their gifts not their challenges. It is fully that our kids are being looked to as one of the best groups to be in house lead support members of independent living small group (2-5) situations.
Our DS13 sound a lot like your daughter (except that our DS has hyper precise writing) so for both keyboarding is their future. In the end all. Maybe in 10 or 20 year they will meet at a naturalist symposium, or something else of common special interest. I sure they will both have that slightly disheveled aspie look, and neither of them will care at all. In the end all that is important is that he is happy and hopefully find someone kind and caring. It sounds like your daughter already has these qualities down pat, so she is way ahead of most at her age