World Down’s Syndrome Day 2017
Six and a half years ago, we were presented with a fait accompli. We discovered that our beautiful new baby boy just happened to have been born an extra chromosome 21 in every cell of his body.
Whilst this was a huge shock; and believe me, there is nothing like the roller coaster of emotion that we went through for at least the first year; we are always grateful that we had an at birth diagnosis. Many conditions, including little Miss BB’s Type 1 Diabetes, aren’t uncovered for many years after birth, and we have many friends who are having to fight their way through the system to get diagnoses and help for their children.
What becomes more and more apparent across time is that the ‘typical’ child with Down’s Syndrome doesn’t exist. All children with Down’s Syndrome are more like their family members than their peers with Down’s Syndrome. Yes, they may have similar facial features to other children with Down’s Syndrome, and they will have learning difficulties; but that really is where the similarities stop, and you realise how diverse and individual every child is.
One of the most noticeable traits about Master BB is that he is incredibly easy to live with. He is usually really calm and contented. He doesn’t necessarily need anything to make him happy. He enjoys company, and doesn’t like being in a different room to where we are. You can take him anywhere and he behaves beautifully, although he is starting to understand the concept of there being choices when shopping, which is making life interesting! We love it when we take him out for lunch, because he has definite ideas what he wants to eat. It is usually a burger, but the more helpful restaurants have pictures of food on their menu, which keep him amused choosing! Master BB has been quite a fussy eater until now, but he will eat foods at school that he won’t touch at home. He won’t eat cake, chocolate, sweets or biscuits at home. Clearly not my child!
This last year was quite a big one for Master BB in some respects. Last summer we took the difficult decision to have magnets inserted into Master BB’s skull, so that his Bone Anchored Hearing Aids (BAHA’s) could be fitted on magnetically. Master BB has glue ear, and some hearing loss which has meant that he has been virtually deaf since he was born. He has had BAHA’s on a soft band around his head for some years, but the magnets were to make him more comfortable and less self conscious in future about wearing his BAHA’s (as he wouldn’t need the headband any more). We knew that long term as an adult, that people with Down’s Syndrome may well have premature hearing loss, so the magnets would be used again later in life. What we didn’t expect was how much Master BB’s hearing would improve through having the BAHA’s attached via magnets instead of the band.
Master BB had one BAHA fitted in September, and the second BAHA was fitted in October. By December, Master BB was pronounced to have normal hearing for the first time in his life, and around the same time we started to see remarkable changes in his interactions and speech. Master BB until December, had never had any desire to communicate with anyone, even though he could sign and could say a good number of words via reading them. If he needed anything, he would just go and get it himself. In December Master BB started initiating conversations, asking for things, pointing, patting us to get our attention etc. He started interacting on the telephone instead of staring at it mutely. He started asking for food and drink, and especially McDonald’s “there, there”!!. Whilst speech is still very limited, the gates are now open, and we are seeing progress every day towards functional speech.
Master BB is a character. He is iPad obsessed, and loves anything to do with snowmen. Despite it being March, we have a snowman sat on our window sill, and we are quite sure he will still be sat there in August! Master BB also LOVES these Magnatiles and will spend hours building and constructing.
Master BB LOVES swimming. When we started swimming lessons, Mr BB really couldn’t see the point in Master BB having them. He didn’t think Master BB would swim, and thought it was a waste of money. However I insisted that swimming was a life skill, and it was important he learnt to swim. This week, I can proudly boast that Master BB got his 5 metre swimming badge and can now swim without any floatation devices. We have been very fortunate to find an amazing, very inclusive swimming instructor, who at every stage has ensured that Master BB had the appropriate support whether in an individual lesson, or in a group lesson.
Master BB also started in Year 1 at school. The move from the Foundation Stage curriculum, to Year 1 is always a big jump for any child, but even more so for a child with additional needs, who really isn’t ready for formal learning techniques. However, Master BB seems to have adapted to his new routines well and he loves school. Master BB loves reading, dancing, and he gets to play skittles at school! He adores school and can’t wait to go every day to school. What I love is seeing Master BB asking Little Miss BB for her hand, every morning in the taxi. The two of them are the best of friends and have an amazing bond. It is so lovely to see, because it was the impact on Little Miss BB that we always worried about when Down’s Syndrome was diagnosed. However, we should never have feared because they probably have a better, and easier sibling relationship than most, and it is beautiful to see.
Earlier this year we had a perfectly daft eye hospital appointment where an optometrist in one room told us that Master BB didn’t need glasses any more, but the doctor in the next room told us that he needed to start wearing them full time. As any parent of a child who wears glasses will tell you, glasses are fragile items which may get bent, or need repairs. Master BB is an expert at bending glasses, so he doesn’t wear them at home, so we were favouring the ‘not needing glasses’ diagnosis, over the ‘wearing full time’ one. We decided to seek a second opinion from our specialist optician who has experience in children with Down’s Syndrome. She took one look at Master BB and said, I know what we need to do. She went away and brought back two prisms which she inserted into a pair of test spectacles. She explained that Master BB has an upward tilt because he uses the lower part of his eyes, and that is where he feels most comfortable looking. She said that it was probably putting a strain on his neck and back, and so instead of correcting his sight (as the hospital would) she wanted to use behavioural optometry to bring Master BB’s horizon down by using the prisms, so that he looked straighter. She popped the glasses onto Master BB, and INSTANTLY his head dropped from staring upwards to being straight. He looked around at us in surprise. We couldn’t believe our eyes! We never expected such a dramatic result. Of course we bought the new lenses, and we are happy to report that just a few weeks later, Master BB now looks straight through his glasses at school. No more head tilt!
Above all, Master BB is still the daily sunshine in our lives. We love seeing him first thing on a morning, or getting him out of the taxi after school. He beams from ear to ear and is always happy to see us. He still gives the best hugs ever! He really is utterly gorgeous.
So, as Spring 2017 begins, we are about to set out upon a big adventure….so watch this space, and we will tell you more.
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