Matthew was born July 13th 1999 he was 5lb 8oz with small or buried penis and testes. The Pediatrician was not concerned as this is common with some children and with age they will become unburied due to the fat in that area. When he was 6 weeks they found a heart murmur (VSD) or hole in heart. It was checked at 4months and found to very small and no concern needed. When he was about 4 months I was a bit concerned with him as he didn't seem to do the things my eldest child did. He didn't smile very much he would look into space alot. He wouldn't put his feet on the floor. I voiced worries to my husband but he said he will get there. Matt was 7mths I really noticed that something was not right. I spoke to my pediatrician and he assessed him again I thought he had Downs Syndrome I was told he definitely did not and that some children have delays for no reason and that he didn't have anything that would mean for him to have a blood test for abnormalities.
When Matt was nearly one he became quite sick with coughing and viral illness every 2 weeks he ended up in hospital where the nurses were concerned with him. My pediatrician then did a blood test he did not think anything would be wrong but was worried why he was so delayed.
Well a week later we were told that Matt had 49xxxxy, my pediatrician was quite shocked as he had never seen this before, and was a bit disappointed that he couldn't give us more information other than the text book horror.Our world was turned upside down, my girlfriend found some info on the internet and Linda and Kim which helped a little but there still wasn't enough.
We did not know what to expect we saw the genetic specialist who got in contact with the other only family in our state with a little boy. It helped talking and meeting with them.
Well over the last 2 years things have been a bit upside down but there have been some great times Matt had learned to roll at 10mths, crawl at 14 months, stand walk around furniture at 2 years and finally walk at 2 1/2.They were the greatest things to see. Matt does not talk much he says a few words and does some sign language signs.
He has had alot of intervention from Physio, Speech, Occupational therapy. I was amazed as to what is out their to help families with special needs children.
Matthew is quite a social child now and is doing very well with daycare. He is just like "normal" toddlers do he can be a terror at times and cheeky as well. He does have some health problems he has Asthma and has been in hospital 5 times with it he also has grommets.
Matthew is now 3 1/2 he is starting kindy for one full day on Feb 4th when he is 4 he will go for 2 full days. He is going to preschool for special children where signing and toilet training are a big part of the program. He will actually travel in a taxi to get there with other special children..He will be assessed at 4 1/2 for school, I have decided that he will either go to special school or be placed in a small class of about 8 children as I feel he will be lost in the system and not get all the help he will need, and am worried he will wander off. I am sure not everyone will agree but we must give our boys the best we can.Matthew is still quite a terror a times although he can now do simple tasks for you. He knows routines quite well now.He loves watching music shows for kids and kids shows with music and singing in them. He loves to dance and gets coy if you watch him.To all the new parents out here I am very happy to be a email friend for you and share milestones with you and your child. We have so much in common, and a little support helps and we understand just how you are feeling.
Update:
Matt is at special school for children with special needs and doing very well. His speech is coming along well and his beahviour is slowly getting better. He goes to after school care in a mainstream group with a extra person to help look after him he loves it there and get on well with the other children. He is toilet training at the moment and doing well with some accidents when he is playing for too long.
Story submitted by hinsley@picknowl.com.au
