Hampton, Virginia
Our daughter, Lori, is going to be 22 on March 12. She was diagnosed at age 4 1/2 as having mosaic down syndrome. At the time, I believe, we were told that the blood sampling showed only 6% of the cells were affected. The low percentage doesn't make a difference--Lori is classified as educably mentally retarded. Incidentally, I was 23 going on 24 when she was born, and she was my first pregnancy. I had a difficult delivery and we initially thought Lori had received brain damage due to the delivery because she was born blue.
Early though, I realized she just didn't look like other kids. Unfortunately, I had never been exposed to down syndrome children or adults. I remember describing the differences to our new pediatrician, who gave me a list of possible diagnosis. Mosaic down syndrome was on the bottom of the list and was the last test we subjected Lori to. Sometimes, Bob and I think we were lucky to get Lori's diagnosis later than after birth as we, in our innocence, aimed for the same milestones as other parents. Other times, I get angry because I think of all of the infant stem programs we missed. On a positive, yes it has been difficult!! But understand I cannot imagine my life without either one of my children exactly the way they are. Lori has met the challenges and requirements of a regular education diploma and is graduating in June. I would estimate from all of the wonderful testing that we have had to endure that Lori is functioning on a 6th grade level academically--which originally we thought as a realistic goal to achieve and were told by the experts that we were not facing her "handicap--yet we managed as a family to help Lori achieve this. At home she does very well and spends time (cherished time she tells us) alone when we are all at work. Our next challenge is finding employment and eventually assisted living. Incidentally, Lori is an extremely happy and well adjusted young adult who does not think she really has a disability. Also, Lori and Lisa have a healthy sibling relationship--they hate each other and stick up for each other. The only difference is that Lori is the oldest and Lisa has in actuality taken the older sibling role and watches out for Lori. Bob and I will be married for 28 years in July--despite these and many other challenges.
If I may suggest, as early as you can teach your child to be their own advocate. In middle school, we had Lori participate in a portion of the individualized education program (after test results were shared). Lori wanted a regular education diploma and, with, alot of reservations and prayers, we supported her in this--but we had alot of doubts because she didn't seem motivated enough. We are amazed that she did it and the changing point seem to be when we backed down on trying to help her all the time. Incidentally, we had one very special teacher--Mrs. gist--who advocated for Lori also.
Surround yourself with supportive family and friends. Love your child as they are. Learn to advocate and teach all of your children to advocate. MDS is certainly not the end of the world, nor is it your fault. I just look at it as a fluke of nature--as precious as a four leaf clover. I hope you all have an easier time than we did as there certainly are more resources and information now. If we can help, e-mail us--be patient with me as I'm really just learning how to use the computer--so send a phone number too--I lose e-mail's--I don't know how I do it--incidentally, Lori can use the computer much better than I can.
If I may suggest, as early as you can teach your child to be their own advocate. In middle school, we had Lori participate in a portion of the individualized education program (after test results were shared). Lori wanted a regular education diploma and, with, alot of reservations and prayers, we supported her in this--but we had alot of doubts because she didn't seem motivated enough. We are amazed that she did it and the changing point seem to be when we backed down on trying to help her all the time. Incidentally, we had one very special teacher--Mrs. gist--who advocated for Lori also.
Surround yourself with supportive family and friends. Love your child as they are. Learn to advocate and teach all of your children to advocate. MDS is certainly not the end of the world, nor is it your fault. I just look at it as a fluke of nature--as precious as a four leaf clover. I hope you all have an easier time than we did as there certainly are more resources and information now. If we can help, e-mail us--be patient with me as I'm really just learning how to use the computer--so send a phone number too--I lose e-mail's--I don't know how I do it--incidentally, Lori can use the computer much better than I can.
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