Friday, 30 April 2010

A River of Snot!

At work the other day I was discussing with a colleague the absence of the little boy she is assistant to. He has been off for a week with a streaming cold and my colleague asked me if children with Down's are especially susceptible to colds and catarrh. So I explained why, and she was very interested as she had no idea .

The central part of the face in children with Down's is smaller than average, which also means that the 'tubes' within the sinuses are narrower. When the children are very young, this causes colds to easily turn into infections and hence the continuous stream of mucus. It contributes to congestion - croup can be a risk also.

It is advisable to help your child out when they are like this - decongestants will ease the situation considerably. Not only is being constantly 'bunged up' uncomfortable for the child, it can also be very scary not being able to breathe normally. A vapouriser in the child's bedroom can help them to sleep easier as can a bowl of hot water with Vicks or eucalyptus oil in it to create an aromatherapy effect. (Obviously place any bowls of hot water in a safe place!)

A tip - try and teach your child from as early as possible how to blow their nose - it's quite a hard thing to do when you are little, but if they are able to express some of the mucus on their own, it helps considerably. Helps us poor teaching assistants as well!

Croup can be terrifying for any small child, but a child with Down's will not necessarily understand being told to calm down and try to breathe normally during an attack. An effective way of relieving the condition until you are able to see your doctor is to shut you and the child in a small room (the bathroom is usually best) with the hot water running and a kettle boiling in order to create plenty of steam. This goes a long way to easing breathing and bringing up phlegm. It is not a cure by any means - I would recommend taking the child to a doctor.

Generally, once the child reaches about 8 years old the nasal passages will have grown and the amount of colds will hopefully decrease and you will be free of the river of snot!

Wednesday, 28 April 2010

About Me..

My daughter was born 22 years ago in a private hospital in Greece - at the time I was married to a Greek and living out there. I was 28, already had a healthy toddler, so no tests were considered necessary other than the routine.

She arrived a month premature and I didn't see her until she was ten days old. My husband was travelling and neither the hospital staff nor our families knew what to do, so what they chose to do was tell me my baby was seriously ill in an incubater and may possibly die. I was prevented from leaving my room and told it would be best if I didn't see her. Once my husband arrived three days later, I was taken home and he broke the news to me that the baby had Down's Syndrome. What can I say - I have never felt so relieved in my life! My baby wasn't going to die - also I remembered a friend at college who had a brother with Downs that she used to take to school on her walk to college with me, and he was a lovely young man.

Unfortunately, the doctor and certain close family members were not so optimistic. We were told this child would ruin our lives, would be a vegetable, would be better gone. We were offered unthinkable 'solutions' - put her straight in a children's home or euthanasia.

We didn't know what we were going to do, but were both emphatic that we would not be taking up either of those offers. My husband was coerced into visiting one of these 'homes' and returned visibly shocked after seeing something resembling one of the Rumanian orphanages. A nurse told him that not many children there lived past the age of three.

So we finally went and got our little blonde daughter from the hospital - she'd been a hefty 7 pounds at birth, not bad for a premature baby, but was now looking thin, a little grubby and had scratched herself on the face with her untrimmed nails. My heart went out to her and I was so angry that I had been denied sharing those first ten days of her life.

The first years were not easy - it is a big shock to find the child you have is not the one you were expecting and you rack your brains to try and find anything you may have done during pregnancy to cause it. The fact is, it's mostly just a fluke. You can ask 'why me?' but the question is really 'why not you?'

Your families have the same difficulties - my Greek in-laws huffed and puffed about not having anything like that on their side of the family, but also thought she may grow out of it. I couldn't persuade them otherwise! I discovered who my real friends were - people I had been really close to just faded out of the scene while others surprisingly stepped up to the mark and offered endless support and encouragement. I wish we had had more professional support - at the time Greece was not really very good at dealing with the disabled in any shape or form. In 1989, the year after my daughter was born, the mental institution on the island of Leros was exposed as mistreating 3000 patients, many of whom should never have been shut away in such a place, including people with Down's and the elderly. Needless to say, any doctor or paedicatrician I visited always seemed to recommend some institution or other. As for professional emotional support - none.

Luckily, there was a support group run by a Scottish lady for all parents of children with special needs. This was a life-saver, not only a major source of information but also someone who was willing to talk and listen at any time of day. Through this group I found someone to give us Portage and amazingly, a Greek lady who ran a pre-school but was also trained in the USA in teaching children with Down's. She took us on and my daughter attended twice a week.

I read as much as I could and took on board the idea of providing as much mental and physical stimulation as I could for my daughter. She was included in every activity and never allowed to 'vegetate'.

Sadly, my marriage did fail - my husband was very young and totally unprepared for such a major change in his life. Plus being Greek man, a less than perfect child is quite a blow and not all Greek men can come to terms with it.

I returned to the UK when my daughter was 5, knowing nothing about the English system or what was available. Again, I was very lucky in having a health visitor who bustled in and took charge, letting me know what I should be doing and how. She whisked us straight down to the local infant school and asked if they would be willing to take my daughter on - I always remember the headmistress's response, along the lines of well, we've not done it before but we'll have a go! We never looked back - my daughter had two happy years at that school with some wonderful LSA's and teachers, went from being unable to speak to learning to read and write. She went on through juniors and even three years at secondary school. Everyone who worked with her in mainstream school was marvelous and contributed so much. Obviously there were hiccups along the way, but they were few and far between.

Now, 22 years on, my daughter has attended the local technical college for two years on a full time course and still goes there twice a week for vocational courses. I am now working as an LSA to children with Down's in the very same infant school she attended all those years ago, and hopefully giving something back. Yes, having a child with Down's Syndrome changed my life irrevocably, but certainly not in the way that was predicted when she was born!

That Tongue!

One characteristic of people with Down's Syndrome is the larger tongue which can protrude. You can assist your child to keep their tongue in in many ways.

Firstly, improve the muscle tone of the tongue by introducing little exercises - touching the tongue to the upper and lower lips and side to side. If they are unwilling to do this, you can make it more interesting by smearing a little something tasty around the mouth - a few chocolate sprinkles or some jam work wonders! Brush the tongue gently with a soft toothbrush - this stimulates blood flow and the muscles.

When your child is small, just gently poke the tongue back in the mouth with your (clean!) finger and perhaps tell them quietly to put their tongue away. Don't make a big issue about it, just turn it into something you do as a matter of course throughout the day.

Mouth exercises also help towards speech development. A tongue that is better controlled will mean clearer speech when the time comes. When your child is slightly older, introduce little games such as blowing through a straw to make bubbles, blowing a feather into the air, drinking through a straw, making funny noises - 'ooooooo-eeeeeee-aaaarrr' - singing Old MacDonald works well for that one!

Your Baby - Make the Most of the Day

You can begin helping your baby right from the very first weeks. Babies with Down's Syndrome are described as 'floppy' with poor muscle tone but it is simple to introduce little routines into your day to improve this. During a bath, encourage them to kick and splash.Afterwards, massage the arms and legs with baby lotion in order to give the muscles a mini work out. When playing with your baby on your lap or in the cot, turn it into a little exercise session by bringing the arms or legs forward and back. As your baby grows and shows an interest in what is going on around them, make their world so interesting they want to get at it - put a toy they like just a couple of centimetres out of their reach so they have to stretch to reach it.

When the baby is lying on the floor on a blanket, put something crunchy like crumpled paper underneath so that wriggling about causes a lovely noise. Use anything around you that makes a good noise or feels different - furry, bobbly, shiny, a plastic bottle filled with beans, use your imagination. It doesn't have to cost anything and your baby will get the stimulation to both mind and body from the experience.

I used to carry my daughter in a sling while I was doing the housework when she was tiny so that she was a part of what I was doing and could see the world around her. I could talk to her as I worked and she also got the added bonus of the movement together with the security of being close to her mother.

Take your baby anywhere and everywhere - each new experience stimulates the mind and senses which in turn aids development. Lots of interaction with other people and children - this will get your baby used to all kinds of situations. One thing I have noticed with my own daughter and the children I have worked with is a sensitivity towards loud noises and crowds of people - you can begin to build up a tolerance to these kinds of situation by not avoiding them. My daughter is still not keen on crowds or busy shopping malls, but she will deal with it in a sensible way - no tantrums, no crying, no refusals to move as I have seen with other children with Downs. We can travel on planes, boats, trains because she has been exposed to these experiences right from babyhood. I worked with one child whose parents were unable to fly anywhere for a holiday because of her complete meltdown when faced with aeroplanes, which was indulged - tell me, would you prefer to fly to your holiday destination in three hours or drive across Europe with three small children for two days?

Tuesday, 27 April 2010


I've had this blog in mind for quite a while now as I felt there was a need for a friendly and experienced source of support and information for the parents of children with Down's Syndrome. My own daughter is 22 years old and over the years I have been fairly lucky with the support I have received, but there were gaping holes in the information on hand which I have had to fill through either trial and error, intense research, pure luck or being just stroppy enough to get the answers I was looking for.

I don't claim to be an expert - if you notice any errors in the information I post here, please feel free to get in touch and put me straight! I have, however, seen my daughter through the mainstream school system from infant to secondary and even on to college. I have also worked as a pre-school practitioner for 7 years (complete with training in pre-school practice, special needs and as a SENCO) and a further 7 years as an LSA (Learning Support Assistant) in a mainstream infant school working on a one-to-one basis with children with Downs as well as other special needs children.

I hope to keep this blog very much as a continuing work in progress, posting regularly about various subjects connected to the bringing up and educating of a child with Downs. I will try to keep the headings and labels as simple as possible in order for a topic to be found quickly and easily. For instance, anything to do with dentistry, teeth, special needs dentists etc. to be under the label 'teeth' - the last thing any harried parent needs is to be messing around unnecessarily searching for what they want to know!

If there is anything specific you would like to find out about, again get in touch - if I don't know, I can attempt to point you in the right direction. If there is anything you feel should be shared - get in touch!

I will put relevant links in the sidebar, i.e. the DSA - I cannot recommend the Down's Syndrome Association highly enough for their informed and positive approach, as well as having fantastically well-qualified advisors on the end of the phone who are willing to help you with any query you may have. Joining the DSA also entitles you to receiving their newsletter which is informative and upbeat.

Thank you for visiting - I hope you will be back another day!