My struggle

[Lancer09]

People who haven't spent real time, or really interacted with individuals on the spectrum don't truly understand the patience it takes. Hang tough, and just know that you are doing more for them than many others would. They are yours and you are theirs whether they know how to communicate that to you or not. It's hard not to be a little cynical about life in general, throw in what you have at home and I don't think anyone here will fault you for that.

back when I was working with Adaptive phys ed classes at MSU we would pair up with individuals, all that has to be done is find that one trigger for them, it may be as simple as them being able to make eye contact with you (pretty much impossible for people with autism), or being able to look at you and listen at the same time (also pretty much impossible). Just keep working with your children, things may not ever be any different but the best thing you can do is try to teach them, and try to learn from them at the same time.

I had an Aunt who had a cognitive disability, albeit not austism. However she taught me more about unconditional love, hard work and being a good person maybe more than anyone else. She kept my grandpa alive until he was 90 years old. She woke him up every day, made him shave every day. Made sure that he drove them to breakfast at Hardees a couple times a week and fixed him dinner every night. She never learned how to read, never learned how to drive, or work any sort of job. But she did what my grandma taught her, how to cook, keep a clean house and love her family. Her Christmas presents were always easy too. All she ever wanted to was dvd's that she would watch endlessly.

We lost my grandpa a few years back, and she inherited the house, but we all knew she wouldn't last long. She died within 2 weeks of him. My grandpa lived for her, and she for him. You will never have the traditional parenting experience but that doesn't mean that you cannot get as much out of it either, it just may be different.

[Amery]

Thank you.

[Mitch f]

God bless you man. I'll take you out in my boat sometime. What general area do you live?

[Amery]

Nwa

[hoglaw]

Amery:

You need to come fish the creek at my house. Shoot me a PM some time and let's get together.

I grew up in Jacksonville Arkansas, and there was a member of our church who had a son about my age who was autistic. He never spoke a word, but could understand folks as I recall. When he got a little older, he came downstairs and said "it's cold outside today." They were the first words he ever spoke. It was a pretty neat deal.

On the other end of the spectrum (not the autism spectrum), I have a step sister who is a little older than me (I'm 34). She was born with a disorder called Rett Syndrome. It only affects girls, and I'm not sure if a girl can have it "worse" or "better" than another person afflicted. But my step sister is 100% disabled. She does not speak, just moans, cries, and grinds her teeth. She doesn't understand commands and can't perform any activities of daily living on her own. She can drink from a straw and can sort of hold a cup with assistance. Before she was 18, she lived in a facility that took care of mentally handicapped kids but spent a lot of time at our house as my step mother was a single mother at the time and taught math at a junior high school in little rock. After she turned 18, my step mother retired and cared for her full time, so she has lived at our house for the past twenty years.

In the last five years or so, her medicaid benefits helped with "respite care" and would pay another care giver to take her X number of days per week. But we had a problem with the caregiver and he's going to the pen over it. After that, my step mother resumed full time care, but recently found a facility in Jonesboro that would provide respite care. So she goes there for a week or so at a time, and then comes home for a week or so. It has been very difficult for my step mother to let anyone else take care of her, partly because of the deal with the bad caregiver, and partly because of the guilt of not taking care of her own daughter. But the Jonesboro facility has been a real blessing.

None of us can imagine what it's like to take care of a child with special needs unless we've lived through it I think. It's a tireless job that often feels thankless. My wife and I are expecting our first in November and we couldn't be more excited. It's funny to think how we used to hope we'd get a boy first, or hope that he'd be into fishing/sports, or hope that he'd be really smart or successful. Now we just hope for a healthy baby, but will happily accept whatever life gives us.

[Amery]

Hoglaw, I have attempted to send you a pm. Maybe your inbox is full?

[ness]

Amery, I've got a son on the spectrum -- high-functioning/Asperger's. I've got it pretty easy, comparatively. But because of that, I've gotten to know a lot of families who have kids with much greater needs. It's incredibly tough, but it can be done.

It's normal to think you've got to tackle this all yourself, but that's not really the case. Don't be afraid to reach out. Family, friends, church -- there's help out there. Work on those relationships and nurture them. Give and you will receive -- unconditionally both ways.

A lot of how things go in life is guided by what goes on in your own head. Faith will give you clarity, comfort and hope.

[Old plug]

I commend you for you determination. But has anyone consulled you about several years down the line.???? There may cery well come a time when they will have to be institutionalized. I knew someone who had to do that solely for safety sake. As they become older amd stronger a attack could result in a critical injury. That might sound terrible but it is a reality.

[Amery]

Thank you ness, it is incredible, the people you meet at 5k runs and at therapies. I know for a fact that we could have it a lot tuffer than we do. They normally do amazing playing by themselves, they entertain themselves like nothing I've ever seen.

Also I cannot imagine any senerio where I would consider institutionalizing them, and I find it odd that someone would suggest that.

Thank again everyone for the support.

[Old plug]

Amery---- I hope for your sake it will not happen it depend on many things as they grow older. The instance I know was many years ago and her son was about 7 yrs old. He found something heavy in the house and used it on her while she was sleeping. Almost killed her. He did not understand what he did. Today there are a lot of different drugs I assume. Mayve they got a lot better hold on it than they did in my time.