one of my dear online friends is geri, mother to jimmy (and other children as well!).... jimmy is a older than most of my friend's children, so geri is a lot further along in this journey of life with Down syndrome than many of us! she is a blessing and a true encourager to me! i asked her a few questions a while back, and this is what she shared with me! enjoy!
Penny: Did you have a prenatal diagnosis that Jimmy had Ds? If not, how were you told that he had Ds?
Geri: We did not know that Jimmy was even a boy, much less that he had Down Syndrome. This was 1981 the test that are available now were not available then! The few tests that they did were all fine. I was told the day after he was born that he may have a glandular problem and they had done some tests and had sent blood to be checked. The Doctor casually ask me if I had heard of Down Syndrome. I just shook my head yes, while he said he did not believe that was what he had. I found out when Jimmy was eight days old and I took him to Dr Robert Abney, a pediatrician that was also a cardiologist, that he did have DS.
Penny: What were your feelings when you were told that he had Ds?
Geri: I prayed the night before and I knew he had DS, I ask God to please show me the way to do what he wanted me to do. I knew there was a reason why he gave me Jimmy and I was honored as well as a little scared.
Penny: When Jimmy was born with Ds, did you have a strong support system, either family, friends, church family, etc.?
Geri: My family was very positive, especially my sister Bab's. She was always there for him and me. There were some family members that refused to believe it at first. They all came around quickly realizing that it was not a bad thing to have DS. I called the health department and asked for any information that they had to be sent to me. I quickly learned what a blessing Jimmy is.
Penny: What services were available to you when Jimmy was little? we are so blessed with Early Intervention now, i'm just curious as to what types of services you received, if any?
Geri: He had an AV-Canal repair of his heart at 5 1/2 months. He was sick and in and out of the hospital until he was four. He was still sick a lot but not so sick that he had to be put in the hospital. Hudspeth Center, a state mental health facility, would send therapist to our house every few months to see how he was doing and tell me ways to help him with feeding, etc. When Jimmy was 2 1/2 an Early Intervention program was started at Hudspeth Center. I took Jimmy five days a week (unless he was sick) for speech, physical and play therapies. The director of the program would call me when a new parent and baby would be coming in to meet with him about bringing their child to the program, so Jimmy and I could be there, they could see him and how positive I was and I was the lucky one that got to hold the babies. I loved seeing the new babies and I am still very good friends with some of them. He went to Early Intervention until he was almost seven and started to public school. His kindergarten teacher was great, but his teacher 1st - 4th was WONDERFUL! She worked us so hard. Homework every night. WORK WORK WORK! It paid off though he can read and write. Math comprehension is not so good, but tell him your phone number and he will call you forever. He is very good at remembering birthdays and anniversaries also. Jimmy is very thoughtful!! He had a great teacher in Jr High, but I have to say high school was not so great. I had to fight with teachers quite a bit. I guess the hardest thing about having a child with DS is other people's ignorance. I was ignorant to what DS really is before I had Jimmy myself.
Penny: Is there anything else you would like to share with us?
Geri: When Jimmy was about four and was SOOOOO sick with pneumonia he had to take medicine that made him try to climb out of his skin. For over a week he did not sleep but for a few minutes at a time, so I did not sleep. Finally I ask Dr Abney if we could skip a dose of this medicine so he could sleep. We skipped the 6pm dose and when the nurse came in at 10pm to give him the medicine I had rocked him to sleep and could not let her do it. I had cried and prayed for that four hours and told God, if this is the way he has to live, I have to let him go. The next morning I was waiting for him to die. The Dr said he may have to go in his lungs and get the fluid out with a huge needle. It was not good at all. One of his teachers from Hudspeth Ctr. came to see us. She said, "Not my Jimmy boy!" She got him up and gave him jello (he had not eaten in days) He came back to life! At five that evening when the Dr. came in Jimmy was running around the room playing, he was so amazed that all he could do was shake his head. He just shook his head several times after that too. I knew that God was showing me he was the one in control.
Penny: What has been the biggest blessing of having a child with Ds?
Geri: The biggest blessing has probably been seeing the way Jimmy has changed people. I have watched time after time how people would act almost scared of him at first and then he would show them what love really is. We still see people that he went to school with and they stop him and are always so happy to see him. Several people that we did not know have told us what he meant to them. That always makes me smile. I knew that there was a group of kids from Jr High thru High school that looked out for him, but didn't know all of them.
Penny: What would you tell parents who have just received a diagnosis of Ds for their baby?
Geri: I guess the best advice I could give new parents is just enjoy and love your baby, but be ready to fight for them along the way! (Isn't that what we do for all of our children though?)