Part-2-of-my-story-for-Downs-Syndrome-Awareness-week.
Part 2 of my story - for Downs Syndrome Awareness week.
So we got our tiny little baby back all pink and healthy, happy days right? Well, not so much, you see acceptance can take a little longer. Amanda sought out mums & tots groups specifically for Downs Syndrome and other conditions like autism and cerebral palsy, this gave her an opportunity to immerse herself in the new world - easy? No. Easier? Probably. I went back to work into the old environment not having accepted the situation so I told no-one. They knew he'd had a heart op but nothing else. One of my colleagues who happens to be a Mormon, visited us in Birmingham Children’s Hospital and he knew, probably obvious to him I don't know. He suggested that we were somehow blessed, but he didn't push it, we weren't in a position to hear it, so just as well.
When back at work another of my colleagues asked me how he was and I said he was getting better. He then asked would he be fine once he recovered from the heart op and I lied "yes". He said, "oh that's good, 'cos of friend of mine had a Mongol baby.
Wow, hammer bolt through the heart, I found a way to extract myself from the conversation and I think I went and cried somewhere! There were days I wondered how the human body can produce so many tears. The term Mongol is not a nasty term really, it comes from the similarity in appearance between people who come from Mongolia and people with Downs Syndrome, but over the years and through my childhood, it was used negatively, usually if someone did something stupid or clumsy. I found is VERY offence in the early years and mildly offence these days.
Over the months and years I did go through some stupid thoughts that people would look at Jacob in the pram and recoil in horror, but (surprise, surprise) it never happened, partly because he's gorgeous and partly because that never happens in real life. I wouldn't say he smiled more than other kids, he wasn't floppy or particularly supple - I have seen Down's kids who are, but like everything in life you can't pigeon hole people or conditions, and the child will have some of the features of the parents so of course he was gorgeous!!
The early years went as the early years go, with the inherent ups and downs (no, really no pun intended). One story I remember was on holiday in Derbyshire, we went to a playground with a h u g e silver slide, Jacob was around 18months old and had just started walking. To ensure his safety I went up with him and placed him between my legs for the long descent, down we went, but... Jacobs shoe heel caught, just for a moment on a join in the slide and of course my weight and momentum carried us on. When we got to the bottom he wasn't inclined to put any weight on it. We took him to A&E, had an x-ray and he had a hairline fracture of the tibia (shin bone) - oops! He spent the next 6 weeks in plaster.
School: We decided to place him in mainstream, we met the head who was all for inclusion. He spent 2 weeks there only to be told by the newly qualified teacher that she couldn't cope with him! You see he was, and still is, very tidy, so after being outside in his wellies he tidied them away in a cupboard, but as she couldn't find them and he couldn't tell her (or more probably wouldn't!) where he had put them she decided she couldn't cope - I wonder what she's doing now? We moved him to an MLD (medium learning difficulty) school for 4 years before changes to the system made the MLD school a harbour for all the badly behaved kids so we moved him to an SLD (severe learning difficulty) school for the next 10 years of his schooling, to age 19. During his time at school he showed off his thespian aspirations - no inhibitions you see - through dance and song, he's tone deaf and sings half to a whole second behind the music, sounds great! I teach Ju Jitsu so he happily came along and trained and achieved brown belt! Actually he has just returned aged 22 so I'm optimistic that he will gain his black belt, wouldn't that be brilliant? Martial arts are all about controlled aggression which does give Jake a problem as he's not remotely aggressive - except when one of his brothers (or his dad) wrestle him to the floor, then he shouts like crazy and gets really angry! But on the Jitsu mat he's calm and a bit too relaxed, however being an extreme visual learner aids his progress in Jitsu immensely.
When Jacob was still a baby we went for a number of blood tests, initially to prove to ourselves that he had Down’s Syndrome (!) and also to find out which sort as this might give us an indication as to his potential – ALL crap and pointless, but we did it anyway, I can’t even remember now what the outcome was.
When Amanda got pregnant for the second time, we decided we needed to know, as no-one could tell us if we were likely to have a second child with Down’s, so after much consultation, we decided to go for an amniocentesis. This is a very invasive procedure and carries a risk of miscarriage but we needed to know so that we could be mentally prepared this time, so in we went, through the procedure, then the long wait to find out the results. What no-one had warned us was that it is not uncommon to have insufficient foetal cells contained in the amniotic fluid to get a proper test result – and this was the case with us. We felt cheated, annoyed, frustrated and after that decided “what will be will be” as we weren’t prepared to risk Amanda’s and our new babies health, so we waited.
Morgan was born in June 1994 healthy and happy, well as happy as a new-born gets.
So we got our tiny little baby back all pink and healthy, happy days right? Well, not so much, you see acceptance can take a little longer. Amanda sought out mums & tots groups specifically for Downs Syndrome and other conditions like autism and cerebral palsy, this gave her an opportunity to immerse herself in the new world - easy? No. Easier? Probably. I went back to work into the old environment not having accepted the situation so I told no-one. They knew he'd had a heart op but nothing else. One of my colleagues who happens to be a Mormon, visited us in Birmingham Children’s Hospital and he knew, probably obvious to him I don't know. He suggested that we were somehow blessed, but he didn't push it, we weren't in a position to hear it, so just as well.
When back at work another of my colleagues asked me how he was and I said he was getting better. He then asked would he be fine once he recovered from the heart op and I lied "yes". He said, "oh that's good, 'cos of friend of mine had a Mongol baby.
Wow, hammer bolt through the heart, I found a way to extract myself from the conversation and I think I went and cried somewhere! There were days I wondered how the human body can produce so many tears. The term Mongol is not a nasty term really, it comes from the similarity in appearance between people who come from Mongolia and people with Downs Syndrome, but over the years and through my childhood, it was used negatively, usually if someone did something stupid or clumsy. I found is VERY offence in the early years and mildly offence these days.
Over the months and years I did go through some stupid thoughts that people would look at Jacob in the pram and recoil in horror, but (surprise, surprise) it never happened, partly because he's gorgeous and partly because that never happens in real life. I wouldn't say he smiled more than other kids, he wasn't floppy or particularly supple - I have seen Down's kids who are, but like everything in life you can't pigeon hole people or conditions, and the child will have some of the features of the parents so of course he was gorgeous!!
The early years went as the early years go, with the inherent ups and downs (no, really no pun intended). One story I remember was on holiday in Derbyshire, we went to a playground with a h u g e silver slide, Jacob was around 18months old and had just started walking. To ensure his safety I went up with him and placed him between my legs for the long descent, down we went, but... Jacobs shoe heel caught, just for a moment on a join in the slide and of course my weight and momentum carried us on. When we got to the bottom he wasn't inclined to put any weight on it. We took him to A&E, had an x-ray and he had a hairline fracture of the tibia (shin bone) - oops! He spent the next 6 weeks in plaster.
School: We decided to place him in mainstream, we met the head who was all for inclusion. He spent 2 weeks there only to be told by the newly qualified teacher that she couldn't cope with him! You see he was, and still is, very tidy, so after being outside in his wellies he tidied them away in a cupboard, but as she couldn't find them and he couldn't tell her (or more probably wouldn't!) where he had put them she decided she couldn't cope - I wonder what she's doing now? We moved him to an MLD (medium learning difficulty) school for 4 years before changes to the system made the MLD school a harbour for all the badly behaved kids so we moved him to an SLD (severe learning difficulty) school for the next 10 years of his schooling, to age 19. During his time at school he showed off his thespian aspirations - no inhibitions you see - through dance and song, he's tone deaf and sings half to a whole second behind the music, sounds great! I teach Ju Jitsu so he happily came along and trained and achieved brown belt! Actually he has just returned aged 22 so I'm optimistic that he will gain his black belt, wouldn't that be brilliant? Martial arts are all about controlled aggression which does give Jake a problem as he's not remotely aggressive - except when one of his brothers (or his dad) wrestle him to the floor, then he shouts like crazy and gets really angry! But on the Jitsu mat he's calm and a bit too relaxed, however being an extreme visual learner aids his progress in Jitsu immensely.
When Jacob was still a baby we went for a number of blood tests, initially to prove to ourselves that he had Down’s Syndrome (!) and also to find out which sort as this might give us an indication as to his potential – ALL crap and pointless, but we did it anyway, I can’t even remember now what the outcome was.
When Amanda got pregnant for the second time, we decided we needed to know, as no-one could tell us if we were likely to have a second child with Down’s, so after much consultation, we decided to go for an amniocentesis. This is a very invasive procedure and carries a risk of miscarriage but we needed to know so that we could be mentally prepared this time, so in we went, through the procedure, then the long wait to find out the results. What no-one had warned us was that it is not uncommon to have insufficient foetal cells contained in the amniotic fluid to get a proper test result – and this was the case with us. We felt cheated, annoyed, frustrated and after that decided “what will be will be” as we weren’t prepared to risk Amanda’s and our new babies health, so we waited.
Morgan was born in June 1994 healthy and happy, well as happy as a new-born gets.
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