In His Care: Our Story of Raising a Child with Down Syndrome
- Wednesday, October 01, 2003
Opposition against home schooling her came in many forms. I was told by other Christians that it couldn't be done. I was discouraged from pursuing this from healthcare professionals involved in her therapies.
The biggest drag on my time and energy concerning Kaylee came with her therapy. She was receiving Speech, Occupational, and Physical therapies. The therapists came into our home, and we sometimes had 5 to 6 different sessions a week. I grew to hate the intrusion on our family and I grew to resent always being told what Kaylee could NOT do. I wanted to focus on her accomplishments, and on how to improve and build upon what she was already doing, instead of worrying when she would walk, or speak, or stack blocks, or use a scissor. The "intervention" process started when she was not even a month old. My phone began to ring from different agencies that had been alerted to a "special needs" child being born within the district. The public school called, social services called, public health, and I don't even remember who else. My first instinct was to latch on to these people to get my daughter the help she needed, but the Holy Spirit calmly said, "Just wait. Check these agencies out thoroughly before you jump in. Don't ever forget that YOU know what is best for your baby." Yet I had several different people tell me in no uncertain terms that THEY were the experts on children with Down syndrome and had so much to offer me! If I just signed her over to their programs I could get all the help I ever needed. I know these people meant well, but their ideas of "intervention" did not sit very well with me. After we researched our options and sincerely prayed, we decided to say no to what they had to offer. We received considerable pressure, and even received hints of a threat that if we did not get our baby the help they thought she needed, legal action could be taken. I stood firm, and thanked each person who offered the different services that were available, but I said we were home schooling and would be the ones in charge of our daughter's medical needs, therapies, and education. The best help I received was from Home School Legal Defense Association, and the Special Needs coordinator there guided me through what I needed to do. They were the only ones who told us the government interventions that were being offered to us were "optional". Although we had considerable pressure, the Lord enabled us to kindly but firmly say no to the programs they wanted our daughter enrolled in.
The sometimes daunting task of meeting our daughter's needs fell primarily on my shoulders, although my husband was a tremendous support and never wavered in his enthusiasm or thankfulness for Kaylee's presence in our lives. When I doubted myself, or questioned the Lord, my husband was a steady rock. When I needed to cry, he held me and comforted me. He prayed for us and encouraged me and loved our new little baby with his whole heart. The pride and love he has for his children is wonderful for me to behold. Rather than focusing on Kaylee's weaknesses, he pointed out her strengths. Kaylee has an undaunted enthusiasm for life. She embraces new things with a wholehearted appreciation, and freely gives her love and affection, usually to the people who need it the most. When she was tiny and I was having a difficult day, I would simply hold her, and God would impart a special strength that I literally felt. I sometimes wish I was just like her! She rarely is crabby, even when she is sick. She has bounced back from surgeries and illnesses, and has made more than one nurse cry after saying a tearful "Thank You" when she has a painful procedure done.
In my early research of how children with Down syndrome learn, I discovered that they will learn most everything that our other children will, but they just might need a little bit more time than other typical children do. For example, the average child may walk at 12 to 14 months, some walk much earlier, some walk later. Kaylee did not walk until she was 2 ½, because she had very low muscle tone and strength. But once she started walking, she quickly learned to run. Her strengths have been in the area of speech and cognitive abilities. When she was still a baby we began to use sign language with her to increase her comprehension and ability to communicate. Her first "sign" was "more", for more food! We taught her to sign "thank-you", "mama", "daddy", her colors, and now we are teaching her to sign the letters of the alphabet. Even though she can often speak the words we are teaching her, sign language helps her to grasp the meaning of words more quickly. It is more difficult to speak a word than it is to sign a word, which is why children will wave "bye-bye" long before they learn to say it. At the time we first started to teach Kaylee sign language she had a speech therapist who was one of the most wonderful people I had ever met. She truly loved her job, and she adored Kaylee. Our other children nicknamed her "Therapy Sarah" and she came sometimes three times a week. She was the most encouraging and sympathetic health professional I had encountered up to that point, and she considered the needs of the entire family as well as Kaylee's needs. Our whole family grew to love her, and when she moved away we both cried.
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