When SJ and Pippa were born I read anything and everything I could to try and get the best information I could with regard to which way to go to give SJ every opportunity in life. Some of those associations like the Twins and Multiple Births Association, which has a Special Needs section. I joined this group when the twins were very small and used to go to regular monthly meetings in Sutton Coldfield which was were the nearest group was, this was not on my doorstep but I felt it was invaluable to meet other mums in similar shoes to me. We held a day out at the Special Needs Adventure Playground in Newcastle-Under-Lyme, where I met another mum with twin boys, one of which had DS. I wonder how she is doing now. Her boys were gorgeous with beautiful blue eyes and a shock of blonde hair.
I also joined the local Downs Syndrome group, we used to meet in Sutton Coldfield, at the time I was the only one with twins, one of which had Down Syndrome so Pippa had a great time with all the toys that were available to her. I did not attend this group for very long as there was a feeling of jealousy that some of the group members admited to me. This was because SJ was a twin her development was much faster than the single babies! I now know that I am not the only one who went through this, after being in contact with a couple of other mum's who have twins the same as me.
I also contacted the Sarah Duffen Centre in Portsmouth, this is now called Downs Education it was a turning point for me as I found out so much about the skills that SJ could acquire with a little help from us. However, little did I know that Pippa was ultimately going to be her best teacher ever. SJ has followed in Pippa's footsteps, literally, since birth. Everything that Pippa did SJ followed on a little later. Except in one thing. Reading. This was definetly SJ's area of expertise.
We began to make name cards, held together with clear sticky plastic for all the things that Pippa was saying. Putting them in a photo album of the family. We then progressed to items in the house, food, drink, SJ quickly got the hang of this. We were amazed at how quickly she could learn to read. Around this time, the DSA group that I was with in Warwickshire arranged for Sue Buckley from DownsEd to come and present a lecture about the reading ability of children with DS. It was an eye opener and some of the people attending, teachers, teaching assistants etc were completely unaware of this ability that our children had. It was nearly 15 years ago, so this was ground breaking information.
Sadly, 15 years down the line and it still has not been rolled out to become part of the support and advise that parents of children with DS should be given automatically. Still they have to find out what is possible or probable, and that is only as good as the person giving you the information. Remember my story from the consultant! If my expectations for SJ had been to see her having a drink at the local pub?
Pippa never liked reading, even as a child. Her forte was talking, it still is! Thank goodness! Pippa can talk about anything and everything. She shares so much with me that I am privileged to be in a position that we can have this communication. Even if most of the time she just wants me to listen. Not comment. Not advise. Sometimes that is very hard, but I try. Being a parnet never stops, we still keep learning all the time. SJ also chats to me about all sort of things, but it is hard to explain why people do certain things. I will come to that in another blog.
When SJ was little she loved nothing better than being in a shop surrounded by books, we used to visit the Early Learning Centre's quite a bit, as well as the local library. She would often be found in a shop with a variety of books around her.
One such time we were on holiday in Truro, it was an independantly owned shop, the owner came up to me, she was in her sixties and told me that she had had "one of those" but gave it up for adoption many years ago. Those words have always haunted me. She went on to say that if she had known that her child would have been able to walk, talk and read all those years ago she would not have done the same thing and still regrets it to that day. The twins were about four years old and at nursery at the time. I wonder how many other mothers, fathers, grandparents say the same thing.
If through this blog I can show what patience, bloody mindedness and determination can achieve. Anyone can do it if they really want to.