dr. phil.....

[Guest guest]

Okay, I did exactly what I told Cyndi not to do, I read some of the message

board.

Just a few thoughts on things that really tick me off.

1. People who have autism and live on their own, or with a house parent or what

ever do not have our reality of Autism. Why? Maybe it has to do with the

cognitive delays our children have? who knows? Whatever it is these people can

truly not understand the reality we live each day in.

2. People who only have a child with DS cannot get it either. Trust me, I have

a sister in law who has a son with DS. He is in Jake's class. He is extremely

verbal, reads, does math, writes, etc. He will most likely be able to live

either on his own or darn near it. Is this Jake's reality? Most likely not.

Does my sister in law see the difference? Totally, because she gets to be

around Jake for more than just a few hours at a time. We do vacations, we do

overnight visits, we travel together. She understands the difference the Autism

plays in our life. These other mom's with their typical child with DS....they

do not get it.

3. People who want to give advice on what you should do? They have no idea

what we actually do each day. How many of us are on this sight multiple times

a day just to vent, talk to someone who understands, and see that we are not

alone in our world? I know that I am constantly on this site. I attend support

groups, seek medical help, keep in contact with Jake's school, and all the other

things that these people think we do not do. Do any of these people know what

it is like to live your life 24/7 on alert? Their children probably sleep, they

probably eat with them at the table, they most likely do not open and close

doors constantly, flush toilets as often as they can, like to have all the doors

closed so that it makes getting things out of the refrigerator and dishwasher

almost impossible. One woman said Cyndi should join a support group. Are you

kidding me? She obviosly does not know how much Cyndi participates in this

group?

As I write all this I have had one of my worst Fibromyalsia days. Every inch of

my body hurts. I feel like I am getting the flu, or like I just worked out

harder than I ever have. My head is hurting, I am sleeping, but yet I am not

sleeping restfully. I am on antidepressants, we have no money for anything

extra, and I have converted my family to gluten free everything. I can't even

eat a darn cookie without feeling the effects of the wheat.

I guess I am just not doing enough. I am selfish and should not be a mother,

because at times, it gets to be just too much. I didn't even get to watch the

show because I was trying to catch up on sleep before Jake came home from

school. How I wish some of these people could live in our shoes for a good 2

weeks. They might start to see how easy they have it.

Sorry....Just need to be pissy!

And by the way, I love my son more than I ever thought possible. I cannot

imagine my life without him, or his without me. Does this mean that there are

days I wish I could check out? No. It just means I am honest about my life.

And I feel like I am a lucky one. I have an older daughter who no real issues,

a husband who is not trying to get out of our life and responsiblities, and a

husband who helps me and supports what I learn about Ds and Autism. Not

everyone can say that.

Again, just needed to vent.

Holly