Welcome to my home.... I think.

[Guest guest]

I ran across this while looking for some stuff for staff training. I bet most

of the parents in this group have felt this exact same way so I thought I would

share.

Welcome To My Home…I Think

By Sharon Burleson

Hi. Welcome to my home, I think. I mean, maybe you're welcome, I'm not sure

yet. When I get to know you, I'll know for sure. My child is disabled, and I

need help to do all the things he needs done. So I need you. He needs you too.

Because he gets worn out and bored with me and sometimes dislikes me about as

much as I dislike him (please don't start making judgements about me-we just go

started. It's just that I'm honest, and as much as he is the sole reason for my

existence, there are times when both of us wear thin.

The agency sent you here. I called for help, but I don't get a choice of who

comes into my home and my life. You come at your convenience, usually between

9:00 and 3:00 Monday and Friday. I'm on my own evenings and weekends, when my

other children tug at me and want and feel slighted and offended and I feel

stretched to my limit. You call and tell me you are coming Tuesday morning.

So, I put the stack of unanswered mail and the unpaid bills in the cabinet with

the cereal bowls. Race dirty and clean clothes up and down the stairs, shove

toys and unmated shoes in closets and under beds, and run the gauntlet with

Fantastic to get fingerprints off everything, And then you call to tell me you

have to cancel because of a meeting. Oh sure, I understand, yes, that's fine.

Friday afternoon? Well, I was going to try to go to the library or maybe take a

nap…what? Oh. That's the only time you have? Well, sure, I know it's important

that you come. And we really need the help. Fine. Friday at 1:30. We'll be

here.

I can't always tell when you're real. But my son can. If he responds and

welcomes you, then I set aside my needs and cares and let you have everything I

have, including my son. I have to trust you because he trusts you and looks

forward to your step on the porch. What? Oh, good grief. I forgot your

paperwork again!!! Wait, I know it's here somewhere. I was working on it last

week just after the hot water heater burst and right before my husband came home

laid off. Wait…I think I wrote on the back when the bank called about the

deposit to cover the overdraft. Yeah, I found them! Right behind the peanut

butter…wait, I'll just wipe them off a bit.

You know, I used to be normal. I used to have control of my life, my time, my

home. Having a disabled child turned my life upside down. My priorities

changed. What I would settle for changed. What I would ask for changed. Who I

would accept changed. All that changed because my child needs things and people

and ideas and funding. So my life consists of meetings, regulations,

documentation and paperwork, social workers and agency people, policies and

procedures manuals and administrative decisions, delays and rumors of delays in

checks, people not showing up when needed, people quitting and people showing up

when they are not needed.

Please don't judge me. And I'll try not to judge you. You see, in the long run,

If I don't measure up. I'm still his mother. So we're all stuck with each

other, and I'm willing to make the best of it. Help me to grow, help me to

become better. Accept me as a person, not some perfect saint. I really do know

my child better than anyone else, so help me express that and put it to good

use. Walk with me a ways, not to judge me, but to understand my role within the

heart of my family. Give me the tools and words and people that, like pieces in

a jigsaw puzzle, interlock to allow for my strengths and compensate for my

shortcomings.

Please don't push me past my endurance because if you do, you'll see me at my

worst: Short-tempered, impatient, inflexible and emotional. I'm not good to my

son then, either. Each of us has that fine line. I try to recognize when I am

approaching that line, and usually that is when I am cranky and complaining to

you. Please realize that this is one facet of me, just as real and acceptable

as the superwoman who overcomes unbelievable obstacles. There are sunny days

and then there are thunderstorms, all part of a temperate climate. Well,

anyway, hi. Welcome to my home….I think.