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| Global Development Delay a feature of 22q11.2 DS |
The book even has a space for a photo which in Sarah's case is the photo which was taken in hospital.
Why is it that all the photos taken in hospital look exactly the same ? I am convinced that they don't actually take any photos and there are just standard pictures one for a girl and one for a boy which they give to everyone !!
One key segment of the Red Book is the section on "Your Child's Developmental Firsts" which in the case of a 22q child looks very much like the indicator board shown above. In most of the published information about 22q 11.2 DS there is usually a reference to Global Development Delay.
As Sarah had major surgery at 4 months we expected there to be some delay especially when you have a big scar along your chest ! Some of the early milestone such as rolling over or sitting with support were only delayed by a month or so. However as time progressed these difference became more pronounced. By 12 months when many other proud mothers were boasting about how their baby was walking well, Sarah was only just staring to crawl. At 16 months when Sarah was just starting to stand alone, around 50% of babies of a similar age would be running.
In Sarah's case she was walking at 19 months and running at 22 months.
In other areas there were also delays especially in the area of speech where her first word arrived around 17 month. I have heard mothers of "normal" children complaining that they spend most of their time with the child but the first word is "da da" rather than "ma ma". The goods news for them is that with a 22q child "ma ma" comes first and "da da" is often a long way off as problems with the palate mean that strong consonants such as "p," "b," "g," "t" and "d" are difficult to pronounce.
To begin with the delay in reaching the usual milestones was not a problem as we knew, in her own time, these would be achieved.
The biggest issue was the reaction of others as I have already written about in my Day 8 Post "That child needs to see a doctor !"
By the age of 5, Sarah was unable to walk for any distance and we often relied on a buggy. A standard buggy was too small and we were using a special large buggy which had been provided by the local health authority. Sarah was now at school which is about a mile away from our house and at that time Colleen was not driving. Often they would be going to school along the busy High Street with Sarah in her buggy wearing her smart blue school uniform. On many occasions people would stare at the sight of a school age child sitting in the buggy which was very uncomfortable for Colleen who would deliberately stare back at them until they avoided their gaze. By the time Sarah was 6 we still needed to use the buggy but were concerned about the reaction of the children in her class. The solution was for me to park the car half way so that the buggy would be left in the car and Sarah would walk the final half a mile.
Toilet training was also an area which took a long time. Another uncomfortable situation was when Sarah was at pre-school and having a swimming lesson. In the changing room a girl of a similar age noticed that Sarah was putting on a swimming nappy (diaper) and said "Mummy look at that girl wearing a nappy". After the lesson the instructor took Colleen aside and told her that there had been a complaint from another parent about Sarah. I don't know what her concern was as our actions were those of responsible parents. Unfortunately the prejudices of others are just another thing that parents of all children with a disability have to endure.
The good news is that given time we have got there in the end. Walking is no longer an issue and the best news is that last weekend Sarah and our 9 month old puppy managed to complete a 3 mile walk around the grounds of Hever Castle and Sarah didn't, at any time, complain about being tired.
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| Hever Castle, Kent |
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