How Disabling is Down Syndrome?- REALITY CHECK~ With Monique McPherson

Have you any knowledge of Down Syndrome? Can you imagine how it feels to give birth to a child and later discover something about your child which challenges your perceptions and alters your way of life to some extent?

Its Braap is very happy to share Monique McPherson's story and especially her down to earth, practical and extremely positive attitude which helps break through the barriers of pre-conception. Thanks to Monique's input we hope you will realise that everybody has something valuable to offer provided they are given a great deal of help, patience and a huge dose of love!

Kody enjoying life

Let's begin with the basics- Apart from the obvious facial symptoms, what other physical affects can Down Syndrome (Down's) have? In general, heart and bowel defects are often present from birth however a high percentage can be corrected by an operation. It’s a very individual thing and some children have Hyper mobility (kind of like being double jointed,) poor posture, unusual gait and back problems. Sandal toe is also quite common.

What is Sandal Toe? This is where there is a larger gap between the big toe and other toes.

When is Down's usually diagnosed? It can be before birth and some pregnant ladies are advised that they can be at high risk, so tests are available. In some babies it is evident in their features from birth and sometimes babies develop medical problems, usually bowel problems. In Kody’s case it was missed.

At what point did you realise that Kody had Down's?  I knew something was wrong when he was 10 months old. While I was feeding Kody one eye looked at the other- my Mum thought it was a squint so we had him checked by the optician and everything was fine. By 3 months babies are able to focus so Mum checked online for possible causes and we decided to Google the signs and symptoms of Down's. We took Kody to the doctor’s as his eyes were wandering and hoped it could be because of the flatness at the bridge of Kody’s nose: which can be seen in some mixed race or black children- however it is common in Down's.

What did the Doctor say? I asked for Kody to be tested for Down's and the doctor made an appointment with the paediatrician who said she shared my view that Kody could have Down's. I explained to the paediatrician that he wasn’t meeting his milestones and his eyes were crossing. The paediatrician added,’ and because of his appearance.’ I realised then that she could actually see something so I thought he must have Down's, but you hold on to that little bit of hope that he hasn’t. Anyway, it took another three months to get the appointment, the blood tests, and then waiting for the results when she finally phoned me to confirm that it was Down's.

How did you feel when it was confirmed? That day, to be honest, I wasn’t shocked because Kody was 10 months when I first saw something and he was 15 months when I got the phone call to confirm that he had Down's. So I had 5 months to get used to the idea and to get my children used to the idea as well because I always thought it best to be open with them. Telling them was for the best and they love him unreservedly anyway.

Monique at work

What difference has it made to your lifestyle? You focus around your kids anyway but you have to focus a bit more around children with disabilities because you take for-granted some things that you might not be able to do, or that might be a bit more difficult. For instance, Kody doesn’t walk too well because of his hyper mobility. He has visited a physiotherapist recently and had special insoles made to correct his gait and also to try to prevent back problems in the future. He doesn’t walk very far without getting a bit tired and he isn’t always aware of where he’s going or why he’s going, so he might just stop, go in the wrong direction or need to be carried because he’s tired. Kody’s 4 and being, ‘a bit of a lump,’ it can be hard to carry him but I can’t put him in a buggy all the time. He’s going to get too old and I don’t want him in a buggy when he’s a big child- besides his younger brother is 2 years old so it’s a bit difficult, especially with the school run and it’s awkward when carrying them in and out of the car.

What school does Kody attend? Kody attends a special needs school, but I will say in general children with Down's usually do better in mainstream. In Kody’s case he also has autism. He was diagnosed to have ASD when he was 3, and up until he was 3 I was thinking mainstream because things have advanced so much now- people have found a better way to educate children with Down's. They learn just as much as anybody else but it just takes longer. Nowadays Down’s children are taught using a different method.

What type of method? Down’s affects your IQ but it doesn’t make you unintelligent. It doesn’t affect your ability to think and feel, socialise, have jobs and everything we take for granted. Everything we can do people with Down’s can do, they just need a bit more help to get there.

Do they require more repetition? People with Down’s tend to learn better visually. Whereas I could tell you a lot of things and you would probably remember 90% of it, it’s not so when people have Down’s. They usually do better if you show them something. Their short term memory can be affected so they might need telling again a couple more times than you and I, but eventually it will stay there and that’s their way of learning. It’s also best to speak in short sentences and rather than adding opinions just state the facts so it’s easy to understand. This is easy to do in schools so it’s mainstream all the way. In Kody’s case, because of the Autism his ability to speak was really affected. A lot of children his age with Down’s were speaking in small sentences, using signs and being able to communicate a bit more. Kody wasn’t speaking; he was just making occasional sounds and gesturing to convey his needs and wants.

So the power to communicate prevented mainstream schooling in Kody’s case? To me, communication really is a big barrier and I know that in mainstream schools it’s going to be difficult for him to learn at the speed required and for him to have all the resources he needs. The way to teach Kody is completely different. He needs movement breaks and a lot more visual stimulation. I felt that in a mainstream school he would not get the unlimited amount he needs and there will be occasions when they hit a brick wall and do not know what to do next.

Where there any other reasons for your decision? I have heard of a lot of people with children who have special needs that try a mainstream school first, teachers get to that point where they have run out of resources or ideas and their children’s skills aren’t up to speed, basically because they lack special needs teachers. Special needs teachers have been doing it for years and have unlimited ideas; also there is so much more available in a special needs school in the way of resources, which is why Kody’s there and he’s getting everything he needs.

Does Kody cope well socially- For example, can he handle Birthday parties or does he find this challenging?
Well, because I moved home I don’t have a great circle of friends now as they’re all far away so it’s hard to know.

Has he made friends in his new school? He has a small class now and in the pre-school he attended before there was a little boy who was very attentive towards him, but he went on to a different school so we don’t see him anymore and we weren’t in a position to maintain that friendship. Kody’s only been in his new school for a month so it’s early days but the kids are lovely and the teachers are wonderful. They all speak to Kody when he comes in and he seems really comfortable there. When he’s older and can speak a bit I think he’ll make friends but it’s difficult while he can’t communicate. Kody does tend to draw people towards him and they frequently want to mother him. Friends are one of the things I do want for Kody and we’ll cross every bridge as we come to it.

What type of support network is available for adults whose children have down's? In my case I was quite lucky because a Health Visitor visited me soon after Kody was diagnosed and gave me a leaflet that directed me to the PSDS Charity. This particular charity runs a small group for mothers whose babies and toddlers have been diagnosed with Down's. I was given numbers of the four trustees so I rang the one closest to me. As soon as I made that phone call I felt I wasn’t alone. I spoke to Rick Waites the first time and he made me feel completely at home. He was very welcoming and said, ‘just come down and meet everybody else and it will be fine. You’re not on your own.’ - And that’s the first thing you think- ‘What will I do now? Who will I talk to? How are people going to be towards me? How do I behave towards my child?’ You have so many questions but Rick said, ‘just come down and have a coffee.’ Then I said ‘yes, I belong somewhere!’ and it was such a relief I think I cried. 

How was your first meeting? When I went down there it was wonderful and there was a girl, Caroline, who asked me to sit down and wanted to know my story. Everybody wants to know everybody else’s story- how did they find out their child had Down's? How was it on that day? I was just drinking coffee and talking. I felt I had somewhere to be and it was a lifeline, and I made friends with other parents. It was relaxed and nice and I was asked about Kody’s particular situation. When I said I had only known for a month you could feel the shock- you could have heard a pin drop; it was unusual but I wasn’t to know, so I was quite interested to find that out.

How do you feel about it going undiagnosed for so long? I don’t know why it went undiagnosed but I think in Kody’s case there were quite a lot of factors as to why it went unnoticed. I’m certainly not bitter because we had a day of joy on the day he was born and a lot of parents I have met had a day of stress; a day of anxiety because they didn’t know anything about Down's. For a lot of parents it was the first they’d ever heard about it.

So it’s not publicized enough? No and it might have been painted in a negative light to be honest because I heard something awful; in the nineties a really high percentage of mothers that were told before the child was born that it had Down's went on to abort that child. I think that if they had spent time with children with Down's or had a child in the family it might be different because it’s not that difficult to have a disabled child in your life and it’s really fear- and dare I add that it might be encouraged for some of them to have an abortion.

How do you feel about your child having a disability? When you have a child with disabilities you feel that he’s different and you wonder what are other kids going to be like towards your child. Kids without special needs- will they be okay and treat him as he should be treated and things like that? At PSDS you don’t have to worry about that because you find that everyone’s in the same boat when you get there.

What are your long term concerns? At the moment I’m pretty confident that Kody will be well looked after because he’s got siblings that absolutely adore him. My eldest daughter has already told me, ‘Mum, when you die I will drop everything and take over from you. It was very practical and reassuring and I didn’t have to ask. You don’t want to force any of your children by saying, ‘that’s your job.’ They’re willing because they love him so much. I don’t need to worry that Kody will have someone to fight his corner whether I’m on this planet or not. My only concern is what might happen if he needs any kind of emotional, physical or mental care from care giving services. That’s always the worry because of the things we hear on the radio about care homes etc. I know we can’t consider them all the same but my concern is that my son might be the unlucky one and end up with somebody that doesn’t care enough, who is in the wrong job. That’s the only thing I worry about. I don’t think that will happen as we’re a strong family and we’ll help him as much as we can.

What do you think about Kody’s long term prospects, jobs for example? There are so many magazines with case stories in them that highlight the success of people with Down's. You don’t have to be involved with Down’s to join the association and there’s one particular story I read about concerning a gentleman who has been a mechanic for ages because he was given the opportunity to learn. It was what he wanted to do so thank God for him being given the help he needed to get the right qualification. He turned out to be the most reliable member of staff they’ve got because he wants his job. He loves to do his job, he’s good at routine and he’s always on time. It’s nice to see when that happens and there’s one man in America who owns his own successful restaurant.

Let’s finish with a thought- Do you think that the level of dedication and attention to detail shown by adults with Down's is like a characteristic in the same way as the physical signs? I can’t say because everyone’s individual and children go through the stages of stroppy teenager and so on but it might be worth researching.

A huge Thank You to Monique for taking the time to speak about her experience with Kody in such an honest way and I hope, like me, you found it enlightening.

 Jaz McKenzie