What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Monday, 27 February 2006

Down with Down's Dad

This was originally on the BBC Ouch! Website

Down with Down's Dad I'm not at all happy at the moment. This, despite some tremendous things going on in Stan's life: On Friday: He sat through birthday assembly and then went to the front, and blew out all his candles in the presence of the entire infant school. On Saturday: He sat through a film – Chicken Little – without getting out of his seat and getting bored. On Sunday: He did all his sound cards and matching games perfectly So why is Down's dad down? When things are going quietly and well, sometimes you can't help but think about other stuff. It's not the Down's, it's his heart. I was playing football on Friday night, I was in goal and it suddenly hit me (once again) that Stan's heart is held together, we've got an appointment in March to get it checked, it leaks and he will need another operation. This may be tomorrow or when he's 20. It's just that, whatever happens, his life expectancy won't be that of a typical child, and that, as a parent, is an incredibly hard thing to take on board. Why did this happen to me when I was playing football, on my night "off" being a dad? I'll cheer up next time, because, after all, while I was feeling sorry for myself, Stan was doing some wonderful things.

Sunday, 26 February 2006

Athletics for all

This was originally on the BBC Ouch! Website

Stan will be ten in the year 2012, when my town hosts the Olympics. So I'm not expecting him to take part. (His brother, on the other hand, is training to win a gold in the archery. Bullseye)
I mention this because I was really upset in 2003 when the Wizard of Ouch first told me about the banning of people from Learning Difficulties from the Paralympics. They missed out in Athens a year later, but were readmitted in 2005. It all happened because a Spanish journalist infiltrated his country's basketball team at an LD event in Sydney 2000. The result? ALL athletes with LD's were banned by the International Paralympic Committee (IPC)
I see it like this: Last weekend, the Liverpool goalkeeper, Jose Reina, accused Chelsea striker, Arjen Robben, of play-acting to get him sent off.
http://news.bbc.co.uk/sport1/hi/football/teams/l/liverpool/4688126.stm
Now, if the IPC was given the task of punishing Robben (if guilty), perhaps Chelsea would be banned from all competitions for the rest of the season. It sounds ridiculous, doesn't it? But the organisations that head up LD athletics had to go through a stringent re-admission procedure, and, to their credit, they did it. I'm looking forward to seeing LD athletes playing a major part in the 2012 Olympics in London.
After all, look at the rewards
http://www.specialolympicsva.org/media/video_different.wmv

Wednesday, 15 February 2006

Teacher knows best

This was originally on the BBC Ouch! Website

This time, I hand over to Stan's support worker at school nursery, Tanit.


As Stanley’s learning support assistant, working 1:1 on a daily basis with four year old Stan, I thought I would aid Steve in with his blog by describing my experience of working in the nursery with Stan and his integration into mainstream school as this situation has been a learning curve for both Stan and myself.I have been working with Stan since September 2005 and I could not have wished for a more loving and special child to work with. When I first learnt about Stanley and his previous medical battle with his severe heart condition I must admit, I wasn’t sure of what to expect. However, when I first met Stan I was presented with an extemely confident, vibrant young child full of energy and love. It was magical and from that moment onwards I was so looking forwards to this new challenge and learning experience.

Everyday spent in the nursery with Stanley is just so rewarding and its amazing how this little child who professionals predicted would do so very little has the ability to walk into a room and light up the lives of others. Stan has the ability to melt anybody’s heart with the glint of cheekiness that he carries in his eyes and the way he guiltily smiles at you and cuddles you when you are trying to teach him right from wrong. He makes it almost an impossible task!There are many things Stan finds difficult on a day to day basis in the nursery but he is such a determined young boy that he perseveres with everything no matter how hard the challenge. Due to his poor muscle tone, trying to ride a bicycle and trying to produce some of the many signs he uses are just two examples of some of the daily activities Stan struggles with. Stan’s Down’s makes some daily tasks quite difficult for him but nothing stops him and he attempts everything irrelevant of whether he succeeds or not.

A lot of people have many preconceptions about children with down syndrome, the main one being that these children aren’t capable of much and that all they do is cuddle everyone all the time. However, the reality is very different. Yes, Stan is definately a very affectionate child who will give all members of staff in the nursery hugs and kisses throughout the day but he is just like any other four year old we have in the nursery. Stan likes to do what he likes to do, he will through toys around the nursery and will throw a temper tantrum when he doesn’t get his own way just like any of the other children.

If you were to ask me if I think Stanley attending a mainstream school has been beneficial to him I’d say yes. Stanley attending a mainstream school means that he accesses the national curriculum in the same way the other children do and that his disability does not preclude him from being just like any other four year old. He gets to paint with his friends, sing with his friends, play with the water and the sand and even though Stan’s day can sometimes be slightly different eg. by attending speech therapy, he is treated with the same respect and in the same manner as every other child that attends the nursery. Stan has no inhibitions whatsoever, he lives for the moment and lives everyday to the maximum.In contrast? Again, if you were to ask me if I think Stanley attending a mainstream school has been beneficial to the school I’d say yes everytime. Stanley joining our nursery has meant that we have all had to receive training on Down Syndrome and the methods for teaching children such as Stan. In addition to this we have all had to undertake training in makaton as Stan is so skilled with his signing for a child so young he would put most professionals in the education system to shame. I feel that all of the staff and the children that will progress with Stan through the school will have the ability to learn a lot.In summary to this blog I would just like to second Steve’s invitation to all of the medical professionals who predicted the very least for Stan to come and visit him in school and see how much this very special child has achieved.

We have all only been working with Stan since September and yet there is already clear evidence of the huge progress he has made in this short space of time. I am so looking forwards to continuing working with Stan and thanks to his extremely supportive family and the fantastic team that work with him in his nursery and the future staff members that will work with him I know Stan is destined to achieve a lot.

Tuesday, 14 February 2006

Last OUCH blog - Valentine's day 2006

This was originally on the BBC Ouch! Website


Valentine's day memories It's time to thank the Wizard of Ouch and his fine team, for inviting me do this blog, which comes to an end today. Thanks to anyone who read it, and to those kind enough to leave comments. I understand if you've had your fill.

Today, Jane and I were talking about things that happened to us four years ago. It's about this time in Feb 02 that we found out about Stan's heart. The fact that we were able to have this conversation today shows how far we've moved on. Having a disabled child can put your marriage under immense strain, and it's not all been a bed of roses. But, this Valentine's day we're able to look back, and say that we've survived, and we're stronger. Last week Stan and I had our hair cut. The barbers was quite empty, so two guys cut our hair at the same time, different chairs. Stan kept waving over, and it was a dad-and-son bonding moment. Just like millions of such moments all over the world every day, and just like moments I have with Harry. Yes, Stan needs extra help with some things, yes he's disabled, but he's also my son, and in the barbers, it felt like it more than ever.

Friday, 10 February 2006

Happy birthday Stan


This was originally on the BBC Ouch! Website


Happy birthday my little man. Four today. Here he is with his cousin and uncle.
We celebrated at the weekend, by going over to my sister's. Interesting event on the way……We were stuck in traffic by a bus stop. A family of four looked at us and the Dad whispered something to his wife. Gosh, I wonder what they said? Then all of them stared. A lot. Anyway, like clockwork, as though we'd rehearsed, we all swung into action. We hadn't practiced this, but I leant forward and STARED BACK. So did Jane, so did Harry. We were there for a painful twenty seconds, before we moved off. Just as we did so, Stan waved. He's SO forgiving.
I don't think those people will ever stare at anything again. Well, we live in hope………
Whilst we waited in the traffic jam, I was studying Stan's blue badge. It's got an expiry date. What's all that about? It runs out in October 2008. Either this is some administrative necessity, or they are confident of finding a cure by then. I do hope they let us know if they do.