This Story is of our unexpected journey of meeting our son with special needs. I wouldn't say it went smoothly because in 2001 we lost a baby girl after my waters spontaneously burst at just under 24 weeks. we had already discovered at our 20 week scan that our daughter had spina bifida of the sacral region but the prognosis wasn't awful for her as the bifida was in the best possible place it could be in. she had other ideas and whilst visiting a friend my waters went. an ambulance was called and my friend came with me to hospital and waited with me until my husband arrived. our beautiful becky was born that afternoon and only survived for 25 minutes, she passed away in her daddy's hands at 4.45pm 25th June 2011 just 4 months after we got married. She was perfect of course but just too young to survive.
After Becky the hospitals kept an eye on my next 2 pregnancies and I attended Kings College Hospitals Foetal unit, Son 1 was born healthy and weighing a very healthy 8Ibs 6ozs , and son 2 had the same scans including a nuchal scan, 20 weeks scan and a heart scan and nothing picked up the fact he had Down syndrome. I went into labour prematurely at 36 weeks and the labour as labours go was the best one, he was born in the morning of 12th August 2004, the doctor who came to do the baby check was the first to pick up on the signs. he had a high palette, the palmer crease, stubby thumbs very subtle signs but enough to throw our world upside down. I remember waiting for my husband to bring to car round holding my beautiful baby boy and just crying and crying. I felt like I was mourning the child I was expecting and at that time running through all the things in life he would not be able to do! now I know although there are many things he struggles with he has something about him that brightens the room. he is an absolute joy. of course at that time I didn't know what I know now and I felt like I was being punished. one daughter lost and a son with disabilities, what had I done that was so wrong that I was being punished like this? over the coming weeks test after test was done of course that included the blood test to test for Down syndrome and which type of Down syndrome it was as there are 3. he had the typical trisomy 21, he also had a chest x ray, echocardiogram and an ECG. on top of numerous visits to the peadiatrician. we were lucky he didn't have any major health problems other than a underactive thyroid (Hypothyroidism) and low muscle tone (hypotonia) and his feet collapse inwards causing him problems walking too far.
Educationally he attended a special needs playgroup at a year old until he started school, then attended a SEN primary school and now an SEN senior school. he has a global learning delay, he cannot speak much but uses Makaton signing and Picture cards. they are in the process of getting him a tablet that he can speak through. he is currently having heart studies stemming from a raised heart rate in sleep picked up by a sleep study. so in a couple of weeks he will be fitted with a 24 hour heart monitor. he has his problems but is a happy, mischievous and funny 14 year old with lots of friends at school. everywhere he goes someone is calling his name, even making it on the school council last year after being nominated by his friends. he has difficulties walking too far so he does have a Motability car.
he goes back to school tomorrow and is for the first time being separated from his usual friends, he is not fond of change so we aren't sure how he will take it but he knows most of the children in his class. so hopefully he will raise to the challenge.
below in the middle with dad and son 3
