We have 3 children; our son, Peter, our middle child has xxxxy syndrome and 33 years old. Our oldest is 34, just 13 months older than Peter, also a son. So we are always kidding, that Pete (the name he prefers) will never have a middle child syndrome. After all, he has his special status (xxxxy); the oldest, is "the Oldest and oldest son" and our youngest, is "the youngest and only girl". They could tell you lots of funny Pete stories and I am sure some that are probably not so funny (just like all siblings have stories).
I will start at the beginning: Pete was 6 weeks early. We knew there was a problem from the start. He had breathing difficulties in the delivery room. He was taken from me and eventually to another hospital for what they thought was needed surgery. I went home without him and found out our sweet 3-day old baby boy was retarded. It was a very difficult time for us. We also had a 13-month old darling little boy who needed our attention and no one knew quite what to do with or for us. We were very fortunate to have an incredible pediatrician who found a specialist for us and we began our genetic counseling. We still see our genetic specialist on a yearly schedule for him to keep up with Pete's progress. Thanks to him, 6 years later we had a beautiful baby girl who now has her own beautiful child.
Pete had a feeding tube for the first 3 months of life. He did not know how to suck, hence the breathing issue. He had to learn this and we feared eating would later be an issue. He showed them all! He loves all kinds of foods. I read your stories about walking and talking and all the childhood milestones. Pete walked when he was 2 years old; he talked around then too. I thought I would never forget each date BUT you really do. He has poor muscle tone, gets bronchial infections, has allergies, catches things easier than my other children BUT let me tell you what he has accomplished in his 33 years.
He rides a 10 speed bike (he probably will never use more than one speed, but loves the idea his bike is like the superstars), he downhill skis (sure it is the bunny slope but how many of you are Olympic skiers?), he is a fantastic swimmer (like a fish really), he takes public transportation (we live in the suburbs of Boston & he knows the T system better than I do), and he works (we own a business and he works there). He has been to Hawaii twice, to London, Paris, Spain, all over the U.S. both with us and with Special Needs Groups. He is quite the traveler and loves a party! He can name most rock groups and their newest songs, also all the current movies and who is in which one. Get him started on wrestling or football and watch out! Remember he is a Bostonian and we are a true sports crazed city!
At the age of 24, he moved out of our home into a group home. He is now in a new place with 3 other young men. He has friends, places to go (he just called me to check about using his emergency money to go to the movies tonight) and people to go with. There are many Peter stories to tell and if anyone would like to hear specific things I am open to chatting via email or in person. Remember this is the child they told us would be severely retarded. All they knew about xxxxy syndrome 33 years ago you could put in a thimble. It was about children who were in institutes, very few recorded cases and doing poorly. We did not know what we would face BUT we decided to treat him normally and let him do all he could. At the time he went to school, integrating disabled children with the "normal" child was not an option. He was in special classes but I must say, he had some remarkable teachers. Times have certainly changed.
Looking forward to hearing from any of you!Story submitted by: laurenjoeb@yahoo.com
