Archive for the 'Down Syndrome' Category

How to Get a Child to Go to Bed

Tell her there is a big hairy spider behind her on the couch. 🙂

Sissy is too big for me to physically pick up and put to bed, but she still needs to go at a reasonable hour so tonight after begging, pleading and threatening, I told her (with a great deal of drama, shreaking and pointing) that there was a big hairy spider behind her.

She doubted it very much but not enough to stay where she was.

Nature has been a big help to me, Sissy will not leave the house after dark because she is convinced that there are raccoons out there waiting to attack any one little (Sissy is really tiny) who walks out the door.

Works for me. 🙂

Despair at Home

Today my banner should be all dark and gloomy clouds, the title of my blog could “Despair at Home.”

I am at my wits end.

Coder is completely out of control. (for those of you who do not believe the ADHD exists, come and spend a day at my house) Have I ever metioned that Coder is 14. 14! Who does this stuff at 14??

Highlights of the week include Coder writing on my favorite chair with a pen and trying to suck water out of the toilet with the vacuum, and then vehemently denying that he had any involvement in either incident.

Sissy…I can not even share what she did but it is gross and a care giver in my home saw fit to share with a social worker her exaggerated version of the events so now I get to deal with that as well. This behavior is nothing new, if they had read Shirley’s notes from the last 10 years they would know that, but why would anyone have bother to learn about the background of a handicapped child before coming to their home. It is so much easier to make judgements and paint me as a bad parent.

The company that works with Sissy is short staffed and the staff they have is unreliable. I can not plan anything because I have no idea from one day to the next whether or not I will have anyone here.

My business is booming but I barely have time to take care of it, unless I bring both kids with me and after tonight that will not be happening again. They were awful, rowdy, noisy pesty, my client’s wife was so sweet, she tried so hard to entertain them, but they were no better for her then they are for me.

We do not make much money and the business is what keeps us off of welfare but lately I am thinking “What’s so bad about welfare?”

I raised my two older children with minimal difficulty and what I am experiencing now is completely alien to me. I am in way over my head and have no idea what to do about it.

I don’t think I can do this anymore but I know that quitting is not an option. I want to just sit down, put my head in my hands and cry, but that too is not an option. So I will keep going, putting one foot in front of the other, left then right then left, until things get better or I am finally through.

Is Ignorance Really Bliss?

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Mouse Behind Bars

This school year has been a bit of a shock for Sissy. Okay, maybe more of a shock for me. Nothing seems to really phase Sissy.

In the past she has always been one of the higher functioning kids in her class, but in high school this has not been the case. Where Sissy is, maturity wise, on a five or six year old level, most of the other kids in her class are operating at 12, it is perpetual junior high in there.

Lately they seem to have banded together in a little special-ed goth click. There is something disturbing about seeing these sweet young people become what they think the world is telling them to be.

Many of these kids have known her since grade school but now they are constantly make mean comments to her and about her. I know because they do it right in front of me. Their teacher tries to keep things under control, I don’t think they would do it in front of her, but because they do not see me has having any power (and I don’t) they make all the snide little comments and jokes they want.

When I was younger, before mental disabilities became part of my everyday life, I enjoyed a book called “Flowers for Algernon.” This whole situation reminds me of Charley and how he thought his coworkers were his friends but really he was always the butt of the joke and just did not know it.

I realize that this is bothering me more then anyone else. It all goes right over Sissy’s head, she is clueless and perhaps that is a blessing.

When the Going Gets Tough

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Eggs and Blue Bowl

I was just getting my day started this morning when the phone rang. It was Sissy’s school and they wanted me to come and get her. She had been behaving badly and had told her teacher to “Shut up!” Because of the type of work I do I was able literally drop everything and go and pick her up.

This happens a few times every year. I completely understand that they don’t want to deal with her when she is like this, neither do I, but she is my child and my responsibility and I can’t easily hand her off when the going gets tough.

I have a hard time making her spend a whole day paying for what she did in the morning. It becomes a punishment for me also, and seems like it is a little cruel to her. I have to keep her occupied, but not doing anything she enjoys. Doing fun things would be rewarding the bad behavior, but too much of the boring, not fun thing causes her to act up out of frustration and boredom, which maybe what happen at school today.

She is very bright but her decision making skills are like those of a four year old. She is amazingly impulsive and her moods change on a dime. I never know from one moment to the next what I will be dealing with. She is like the wind, the most capricious person I have ever known.

Sometimes you can see it coming, a few years ago she got away from me at the library, ran up to the second floor and shoved a big picture book through the banister of the mezzanine. I was trying to catch up to her and quietly (it’s a library, right?) telling her to come back. She turned the book sideways and could not pull it back through. She is jerking on the book and I am hissing at her to stop, while the ladies at the circulation desk below have no clue that they are in danger from my daughter, with a little help from Dr. Seuss.

I love to go camping but the time she locked herself and my bichon in a port-a-potty was more then enough for me, and my camping days are over.

Other times these things sneak up on me, waking me up from a sound sleep, “We're having omelets for breakfast!” I race down stairs to find every bowl I own scattered though out the living room, with one egg broken it each, most with plenty of shell. Two dozen eggs! I could yell and scream, or we could make omelets.

When the going gets tough the tough make omelets.

A Special Morning

I went with my daughter to the her Special Olympics Track and Field competition today. It is a beautiful sunny day but SO cold. We have been really spoiled with nice warm weather lately and I was not ready to stand out in the cold. The meet itself was wonderful, everyone has so much fun. Special Olympics is defiantly a program that is well worth all the effort that goes into it.

One of the groups had a slogan on the backs of their shirts that read "A Champion is someone who never quits." Words to remember when life is getting you down!

Sissy competed in the softball throw and the 50 meter dash. I do not know where she placed because I was trying to take pictures and by the time I got the shot they were headed over the finish line.

Special Olympics 50 Meter Dash

I was using the camera on my phone so this picture taken at the start of the 50 meter dash. is pretty bad. It could have been a good shot if I had a better camera, but then I would have to wonder about whether or not to post it without the consent of the people in the shot, the way it is you cant tell who anyone is anyway. Sissy is behind her classmate, the girl in yellow, if you squint a bit you can just see her head.