Sandy Weisz

A Midwife in Idaho talks about her experiences and ideas for early intervention and Down syndrome

    When Courtney, our daughter with Down syndrome was born, we were of the mind set to avoid government programs and help. We weren't insured and we tried to pay for everything that came our way as a result of Courtney’s condition.

I read everything I could get my hands on about the needs of a Down’s child. I remembered the article that Missy Rief in Washington state had published in The Teaching Home 2 years earlier and dug that out to review. It’s funny, 2 years earlier I was pregnant with our seventh child and when I read Missy's story I remember saying to myself, "Oh, Lord please don’t let my baby be born with Down syndrome". Of course Jeb was not but here I was two years later walking down that very road.

A friend told me the best thing for my child was that we had a large family. That would provide the best stimulation. I read that first and foremost my baby was just a baby with the needs of most babies. I didn’t want to change how I mothered. I wanted to enjoy holding Courtney just like I did the others. I wanted to nurse her and watch her grow nauturally. We were lucky Courtney was born with fairly good tone, not normal but good. She did things in average borders of normal, things like rolling, sitting and crawling, even walking came early for a child with Down syndrome. I knew what to expect and she progressed faster than I expected. She was and still is a bright child.

    At 14 months she was talking pretty good but then all of a sudden she stopped. Someone said that was because she was learning to walk and she had set aside speech to devote her energies to movement. Courtney went through many medical problems that year, so I didn’t really have time to look into speech therapy. When a year had passed, I finally called the local Child Development Center. Living in a rural community, the CDC was pretty flexible and I could say this is what I want and mostly they said O.K. I chose to have Courtney worked with in our home. I didn’t want her placed in a classroom setting. They offered to pick her up and I said, No, I wanted to be with my child.

They said they could make children learn more in a group setting because children want to do what everyone else is doing. I still said, "No thank you," so we set up for therapy twice a week at my home. Then the ST said she couldn’t come twice a week just yet, matter of fact she had a hard time coming every other week. I always found she was late!

Then the CDC had Spring break like the public school, then they had staff

meetings and summer shut downs for the month of August, etc., etc., etc. Courtney didn’t get much therapy. To top it off as soon as we seem to hit a groove, Courtney turned 3 and the ST said it was time to turn her over to the school district.

I WAS NOT IMPRESSED WITH THE PROGRAM!!!

I didn’t want to put Courtney in a public program so her doctor set up speech therapy, through the local hospital. The therapist was nice, but I could see her tactics weren’t going to work for us.

Neither of the ST’s worked with Courtney on talking, but both went to sign. Neither knew anymore sign than I did, so they would look up a sign then limp through a session. The second ST was full of energy. She’d give Courtney a toy after Courtney would sign for it, then before Courtney could enjoy the reward, she’d yank it away. Courtney didn’t like the game so she would try to find something else to do, only to have the ST say Courtney needed to develop a better attention span.

I didn’t like where this was going. I decided to bring the ST some candy for a tool to learn "you sign you win". That worked but I didn’t really want Courtney to be eating candy. When I found out how much the sessions cost, we dropped out. I was hoping someone would teach my child to talk. I could teach sign on my own and it wouldn’t cost $100.00 twice a week. Courtney is now almost . For a long time I looked at her as being non-verbal but she does have words. She can say Mom, baby, NO, PIE!! And suddenly I can see other words coming out of her. Maybe Courtney will talk in her own time.

The story didn’t end there. My next child was born with her own set of issues. It would have been easier if she had Down syndrome like her sister. I would of had a road map to follow. But Emma is Emma. She had neuromuscular problems that I didn’t know what to do about. So the doctors referred her to CDC. The occupational therapist said wait to see if she’d grow out of it. So we waited. Finally she started to work with her and we went through the same thing.....staff meetings, Spring break, and shut downs and in the OT’s (occupatioal therapist) absences. Emma improved on her own in most areas in her own time. Not in the time my older children had, but in Emma’s time. But we started to notice she wasn’t talking. Matter of fact she had always been silent except for crying, which never ended, for Emma has a sensory integration dysfunction.

I’ve heard it all. The doctor will say it’s Courtney’s fault Emma has problems, because Courtney is Emma’s example. But Courtney isn’t like Emma. Courtney can do things Emma can’t and Emma can do things Courtney can’t do. I also have a whole houseful of others that talk and play and have their friends over There are lots of good examples here. The other one I hear is, "It’s your fault, you enable her. You don’t force her to develop."

What???! I have raised all my others who developed normally and suddenly I don’t know how? Right! And today I get, "Oh, do you think maybe it’s because your husband left the household that Emma has selectively chosen to be silent? Maybe if you tell her it’s not her fault he left, she will open up and talk". It makes me mad! Emma has problems! She was born with problems! She has visible defects! She’s had medical problems and she has brain damage!!! It maybe mild but it’s there!

For a few weeks I took Emma to the class at CDC to see how she would react, but this is what I saw. Because of her sensory issues she was overwhelmed with the noise and commotion. But there was a window of time during their snack time when she would open up. The staff wanted the children to sign their want, so Emma would sign "more" when they were serving cracker, apple or cheese. But when she would sign, the teacher would be looking at another child and I’d say "Emma signed!" and the teacher would say, "Emma, show me." But Emma had signed and she wanted the reward. She wasn’t going to do it again. She didn’t like the game. She had signed, why wasn’t my word as a mom good enough?

So we are right back where we were. The same ST comes out but she is ever late and cancels often. Emma will be 3 this year. I like the people who come to my home for therapy, but they typically don’t believe in God. They have New Age beliefs. I can’t help feeling they don’t deliver much of a service and it’s a waste of tax dollars! Our home delivers more stimulation than any program, but I don’t have the clinical experience to know what to expect and what I can work on. It’s so hard navigating the challenge.