A day with

[Guest guest]

Dear Peggy,

Thank you so much for sharing this very personal information about . You

have an unusual situation wherein your child who is mentally challenged will

always be a child and you have the added responsibility for taking care of all

his needs ad infinitum. It is difficult to place yourself in someone else's

shoes, but we can all try to feel what you have to do every day. I understand

why you wanted him in a better school, they are teachable in the right

environment and with the right teachers who are trained how to teach them

responsibility.

We have a wonderful institution here called TARC. They have a restaurant, a

school and a green house. The restaurant has a gift shop that helps pay for the

cost of running this school as it has to be self supporting. I don't know if

the state kicks in a portion, but they also have housing to give the parents

respite when they need a break. The students there are all ages and only the

ones with the highest IQ's are allowed to work in the restaurant. The menu is

very simple, they just have to check off what the customer orders. There are

students with Downs Syndrome who work in the kitchen, some work at the coffee

counter and some work cleaning off tables. They are all sweet, you can see them

waiting for you to finish so they can clean off your table. There are

supervisors who work with them, especially at the cash register. There is a

large tip jar and your waiter waits to see if you will put a tip in the jar.

The look of satisfaction about being rewarded for doing a good job is amazing.

The looks on their faces with the smiles are equivalent to giving someone a

" high five " . Each one is assigned a job he/she is capable of doing. Each life

is a gift and has value. There is even a music department and some learn to

play the piano. It all started with one couple who had a child with a handicap

and started the school. It is now a model, where people come from around the

country to see how they operate. At Christmas time, they used to have a ride

through the grounds that was lit up with decorations. I don't know what

happened, but it was discontinued, maybe because they have such a large one in

New Orleans. Anything we can do to advance and enhance learning at these

centers is well worth our time and money to support them.

Filling in the blanks with the space over time, I'm sure has made giant

strides in his development. Of course they get angry, have temper tantrums,

but there are methods that teach the parents how to deal with them and I think

your handling of 's problem is the right one. They learn by rote and if

it happens often enough, it will register eventually. They can be hard to

handle as teen agers, they have raging hormones like everyone else, but teaching

them how to control these sudden rages, etc. is paramount. They may even have

medication for that as well.

Just from the little we know about , one can see that you have given him

all of your love and attention to make his life better, moving to get him in a

better school is a good thing, but at a great sacrifice. This leads up to what

I want to say and that is you are to be admired and you should be held in high

esteem and I'm sure we all join in applauding you for all your efforts, because

you have had to surrender your personal life for that he might have his

chance to enjoy the best life that is offered to him in his circumstances.

Where is in his CML? and how old was he when he was diagnosed, you may

have to refresh my memory from time to time? This must have come as a severe

blow to you and your husband in lieu of what he was already going through. I

know his life is far better, because you were willing to yield your personal

dreams for anything that would benefit . I believe that every heart in

this group understands partially what you have to contend with on a daily basis.

It's like you are sick and have to take the daily medicine with him, you have to

be on board and on time all of the time. Tucked inside this message is a big

hug from everyone.

xoxo

Lottie