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 Courtneyís condition.
I read everything I could get my hands on about the needs of a Downís 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. Itís 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 donít 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 didnít 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 didnít 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 didnít 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 couldnít 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 didnít 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 didnít 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 werenít going to work for us.
Neither of the STís 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. Sheíd give Courtney a toy after Courtney would sign for it, then before Courtney could enjoy the reward, sheíd yank it away. Courtney didnít 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 didnít 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 didnít 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 wouldnít 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 didnít 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 didnít know what to do about. So the doctors referred her to CDC. The occupational therapist said wait to see if sheíd 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 OTís (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 Emmaís time. But we started to notice she wasnít talking. Matter of fact she had always been silent except for crying, which never ended, for Emma has a sensory integration dysfunction.
Iíve heard it all. The doctor will say itís Courtneyís fault Emma has problems, because Courtney is Emmaís example. But Courtney isnít like Emma. Courtney can do things Emma canít and Emma can do things Courtney canít 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, "Itís your fault, you enable her. You donít force her to develop."
What???! I have raised all my others who developed normally and suddenly I donít know how? Right! And today I get, "Oh, do you think maybe itís because your husband left the household that Emma has selectively chosen to be silent? Maybe if you tell her itís 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! Sheís had medical problems and she has brain damage!!! It maybe mild but itís 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 Iíd say "Emma signed!" and the teacher would say, "Emma, show me." But Emma had signed and she wanted the reward. She wasnít going to do it again. She didnít like the game. She had signed, why wasnít 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 donít believe in God. They have New Age beliefs. I canít help feeling they donít deliver much of a service and itís a waste of tax dollars! Our home delivers more stimulation than any program, but I donít have the clinical experience to know what to expect and what I can work on. Itís so hard navigating the challenge.