Saturday 22 July 2017

Thoughts from a train journey

Sammy and I had to take a trip to London recently, the reason why is for another post, but I got to thinking about journeys in general and all the emotions that can be involved in them.  It also got me to thinking about a trip I'd taken with Sammy when she was I think about 4yrs old.  I can't actually remember where we were going but we were going by train.  Everything had been carefully planned and naively I thought we'd covered for every eventuality of travelling with young children but what I hadn't foreseen was Monkey's fall.  Now I know that Monkey should probably have been traveling in a safe Monkey carrier, otherwise known as my bag, rather than in the arms of a sometimes unpredictable four year old but it had been a case of picking my battles.  Sammy and Monkey were at that time constant companions and quite inseparable and up until that moment everything had been going really well.  It was as Sammy was lifted onto the train that Monkey fell straight through the gap and onto the track.  Now  believe me this was a big, big deal, Monkey was on the track, we had no way of rescuing him and we had a distraught little girl and her brother to comfort.  I really can't remember just what happened next did but to my immense relief Monkey was rescued by the train's guard, to whom I remain grateful to this day.  We had found ourselves in a situation that we weren't able to deal with by ourselves but having someone there that was able and willing to help us meant so much.  As a parent of a child with additional needs (however old your child may be) it can sometimes feel as if you are having to cope with everything on your own and there are times when it can seem quite overwhelming, so when somebody comes alongside you, for however brief a spell, and provides the support you need to get through that period it makes the journeying just that bit easier.

During the confusion of my emotions after Sammy was born I don't know how I would have coped without the people that came and walked alongside me for varying lengths of time.   My family were just fantastic and whatever their feelings or fears may have been they were there being loving and supportive and totally accepting of this newest member of the family and willing to learn along with me what it would be like to raise a child that was considered to be different.  It also helped that we were introduced to and able to spend time with another family who had a child with Down's syndrome.  The support that came from being able to share my fears of just about everything related to raising Sammy, and there were a lot of them, with someone who had an understanding of how I was feeling was of immense value.  Looking back if I'm completely honest I can't remember a great deal about the early weeks of Sammy's life, just that we started to settle into a routine that became normal for us.  Washing took up a fair amount of time, with there being no automatic washing machine, tumble dryer or disposable nappies for us, it was terry towelling squares, a bucket full of napisan (nappy soaking solution) and a twin tub.  Feeding Sammy was also quite a time consuming business as although she had no major feeding issues she would feed for a little while and then need a short break repeatedly until she'd finished.  It is probable that this was due to her having narrow nasal passages and finding it easier to breath through her mouth.  This is not uncommon for babies with Down's Syndrome, feeding issues may also be due to low muscle tone and an enlarged or an apparently enlarged tongue due to the oral cavity being smaller.  I think I also remember a lot of trial and error in finding the bottle teat size that worked best for her.   Due to various reasons I had made the decision to bottle feed while I was still pregnant and it was in no way linked to Sammy having been born with Down's Syndrome, although it is likely that I would have been advised to bottle feed as attitudes and understanding in the 1970's were quite different than they are now.  Although nappies and feeding did tend to be quite dominate  in our life  I'm pretty sure that I also found time for playing with and reading to the children, going for walks and visiting friends oh and of course the regular routine hospital visits for progress checks.  Life was busy with two small children.

As Sammy grew her individual personality started to really shine through and it became quite obvious that my girl was growing into a determined, sassy little minx. From early on it became one of her favourite occupations to torment her brother and try to get him into trouble. At first she managed quite successfully, that was until the day she was busted.  There were  occasions when I had to leave the children while I popped to the loo, answered the door or quickly went to the kitchen etc.  even though I was only gone for the briefest time I would often have to rush back as Sammy would start to cry .  On my return I'd find her brother looking rather sheepish and I'd discover that he had hit her or taken her toy.  He of course got an appropriate telling off for this which Sammy always seemed to be quite happy about, so one day I decided to sneakily watch them.  That's when I discovered that Sammy would wind him up so much that he didn't know how else to respond and he lashed out, he was still only little himself.  She was busted, my son was encouraged to find other ways of venting his frustration and I learnt very quickly never to make assumptions.  Sammy also thought it was hilarious to roll and hide under the sofa, a very 1970's affair with wooden legs.  I totally freaked out the first time this happened, how could I lose the baby? I'd really no idea where she could have gone, until she giggled.  This soon turned into a great game of hide and seek.  My baby girl was doing things and demonstrating a thought process and sense of fun that obviously quite wrongly I don't think I had expected her to be capable of doing, especially so young.  It was wonderful to see her developing like this as I think I'd been guilty of making the mistake of seeing what she couldn't and may never be able to do.  This set me off on a big learning curve of how to focus on the positives and value every little step and achievement.  There was going to be so much that this girl of mine would be able to achieve we were going t have to take it one step at a time though and not look to far ahead.  Sammy later went on to discover how to knock the bottom out of her cot and escape, I think we decided that perhaps  it was time she had  a bed, another time she decided to throw herself away in the pedal bin and as well as getting up to several other antics she always used to blame poor Monkey if she was caught getting up to mischief, innocently looking at me and saying "Monkey did it".  On the day of the bin episode I am just so glad that I had emptied and washed it out  and I'll never forget the huge grin on her face as she looked at me and told me that she was "in the bin", she knew exactly what she was doing.  I used to tickle and tease and play with her and her brother and say that if they didn't tidy up their toys or put their shoes on or away etc. I'd have to throw them in the bin, the children that is.  Sammy knew how to play with me and she was calling my bluff.  To my mind all these things clearly demonstrated that Sammy had an ability to learn however as it was only a few years before she was born that the 1970 Education (Handicapped Children) Act had been introduced we were not going to be in a position to choose where or how she was educated.  It was a positive thing though that she was going to have the opportunity to get an education at all as prior to this act which gave every child in the UK a legal right to education children with Down's Syndrome had been deemed to be uneducable.    On that note I think it's time to leave my musings for now and come back another time with my thoughts on education, Sammy's experiences of it and how things have changed.

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