Back to India

Tomorrow afternoon I get on a plane back to India. I can't wait to see my friends, meet new people and most importantly see the kids I've been thinking about since I left over a year ago. So many exciting things have been happening at SCH since I was last there. Several kids have been adopted, new kids have come, volunteers have been and gone and of course all the kids have grown and learnt new skills. Sometimes it is easy to forget that it will not all be the same when I get there. I still imagine walking into my old room and seeing my friends there. I still remember my exact schedule and part of me still expects to be following it, despite knowing I have a very different role this time.

Then I remember why I'm going back. I am going to help give Molly a voice. My plan is to spend 3 weeks working intensively with Molly to teach her how to use the eye-gaze computer. My hope is that she will learn the basics and her teacher can then continue working with her. She is so intelligent and I know that she will grasp the concept so quickly. I know it will be difficult. Having had a go controlling the computer with my eyes I know how hard and sometimes frustrating it can be. I am praying that she will enjoy it and work hard to achieve what I know she is capable of, and that I will have the patience to teach her even in those difficult moments.

Over the next three weeks I will be writing about her progress. I would like to take this opportunity to thank everybody who donated to make this possible for Molly. You have helped give her the most incredible gift in the world. I hope that one day soon she will be able to say thank you herself.

Dear Molly

Dear Molly,

Happy birthday! I can't quite believe you're turning 9. It's not because I can't believe how old you are, in fact I often forget how young you are and think you are much older. It's more that it reminds me that time is passing. You are changing. I am sad that I'm not there to see that. Nikki and Tori keep me up to date with your progress. I know about the big things you achieve and get to see photos of you sometimes. What I miss is sharing the little things with you. I miss talking with you. I miss those conversations about completely ridiculous things which ended with us both laughing until our sides hurt. I miss seeing your smile when I walked through the door. I miss you telling me about school that day and hugging you goodbye in the evening. I know I am incredibly lucky to still be in contact with you. I get to skype you and hear about how you're doing but it's not the same. 

This year on your birthday I want you to know how many people care about you. People have donated to give you a voice, to hear your story. These people have seen you as a person before your disability. They understand how amazing you are. Most of these people have never met you and never will but they believe in you anyway. You are so special Mol, and so many people know that. I hope you know it too. 

Happy birthday Mol, I hope it was as amazing as you are.

Love Louise akka 

Giving Molly a voice

The other night I dreamt, as I often do, that I was back in India. I walked along the road that became so familiar to me, through the large metal gates of courage home, said hello to Charlie (the rather scruffy spaniel) and up two flights of stairs. I walked through the doors and could hear laughing. Molly spotted me from across the room and smiled her trademark smile. As I got closer she stood up from her wheelchair and took a few shaking steps towards me and said my name. I woke up after that. It was one of those dreams that was so amazing I never wanted it to end and when it did I came crashing back to reality with an unpleasant jolt. I know that Molly will never be able to walk, her body will not let her. I know will never be able to talk the way we think of talking. But that does not mean she will never talk at all. Molly could talk, tell stories, write, play games, make pictures and countless other things all with the help of a specialised piece of technology. This technology is a small camera that fits onto a laptop. The camera follows Molly's eye movements and makes her eyes the mouse. She could do so much! I would like to raise the money to purchase an eye-gaze strip and a laptop which I can take out to India with me this summer to work intensively with Molly on using the computer for a few weeks. I know how much Molly want to learn and how much she wants to communicate. She can communicate so much in her own unique way this technology would give her the freedom to say anything she wants. It would give her the power to make complex decisions and to entertain herself with a book, film or game. I am hoping to raise £2000 to pay for the laptop and eye gaze technology. I know this sounds like a lot but if each of my Facebook friends donated just £3, the money would be raised. Please consider giving whatever you can afford by clicking on the link below and share this post  so we can give Molly the power to speak. 

https://crowdfunding.justgiving.com/louise-baker

http://loalecha.blogspot.co.uk/2015/05/all-about-molly.html

29 things I learnt in India

1) Don't EVER underestimate a person based on their appearance, how they talk or what it says on a piece of paper. 

2) 4pm is chai time. Everything else can wait.

3) Modern, non-denominational church is a massive culture shock.

4) Let the little things slide. There are bigger things to worry about.

5) Sometimes it's okay to just read a book, listen to music or play a game. It's okay to take a break.

6) I REALLY cannot learn languages.

7) Quick reactions prevent little fingernails breaking skin.

8) Don't wait until later, time flies when you're having fun.

9) Flour and water makes a surprisingly effective glue.

10) Just because something is done differently, doesn't mean either way is wrong.

11) Google does not have all the answers. Most, but not all.

12) Doctors get things wrong.

13) Eating is very challenging if you're blind.

14) Foreigners get charged 3x as much for autos.

15) Foreigners get charged 20x as much for tourist attractions.

16) Patience.

17) Perseverance.

18) Doing what's best for a child can be the opposite of what you want to do to help them.

19) Keep smiling, even when things don't go your way. 

20) Food is a wonderful motivator.

21) Going home is much harder than leaving home.

22) You don't need to talk to be funny.

23) Change your expectations based on what you see around you.

24) Prioritise. Different people need different things.

25) Playing, talking and napping are important parts of life.

26) There is nothing that cannot be done with a cardboard box and some paint.

27) Beauty can be found in the most unexpected places

28) Friends do not have to solve each other's problems, listening is enough.

29) You cannot solve all the worlds problems.  There will always be more work to be done. 

'Lo alecha hamlacha ligmor, v’lo atah ben chorin l’hivatel mimena'

'You are not expected to complete the task, but neither are you free to avoid it' (Rabbi Tarfon, Pirkei Avot 2:21) 

What can you do?

Many of you who read my blog tell me you love what I'm doing and wish you could help. With my time in India coming to a close I thought I'd give you a list of ways you can help.

1) sponsor a child's general needs. This money is used for paying for food, their ayah's wages, doctors appointments and other necessities. There are many children, particularly the older kids, without sponsors. Please contact me for more information.

2) sponsor a child's education. At SCH they aim to give the children the best education possible. You can help by paying a child's school fees. There are many children in need of school sponsors and I'll be happy to give you more information.

3) Make a one time donation to the general fund, for when unexpected fees come up

4) Make a one time donation to the urgent medical fund. Often a child will be rushed to hospital with no warning. We need to be able to pay for medical care in instances where there is no time to fundraise. 

5) Purchase an item off my wishlist for jubilee home. I may not be able to use it but the next volunteer who comes will. I'd love to get the bean bags ordered for the children with CP. Most have wheelchairs but cannot sit in them for long periods due to having spent many years lying on the floor. The bean bags would be more comfortable for them when they cannot stand being in their chairs. 

The link is http://www.amazon.in/gp/registry/wishlist/399YMJ4QVV2U1/ref=topnav_lists_1

6) Purchase something off baby Cadens wishlist. Caden is a very special baby with epidermolysis bullosa, or Butterfly syndrome. It means that any friction on his skin causes huge painful blisters. As you can imagine, he needs a lot of specialised care. 

The link is http://www.amazon.com/gp/registry/wishlist/17DB1JQVEB23V/ref=cm_wl_rlist_go_o? 

These things are not available in India so please send them to 567 Siloam Rod. Magee, MS 39111. A future volunteer will bring them when they come. The most important thing is the tubifast but everything on there is really important for his health and to improve his quality of life.

7) Share! I know many of you cannot afford to do these things but you can share it with people who can. The more people who know, the better it is for the kids.

How can you say no to these kids? 

My first day of school

Ok, so not my first day at school ever, but my first day in an Indian school. Last Wednesday I had the opportunity to visit the special needs school where some of the SCH kids go, including Molly and Lilly. It was a really fascinating day and I enjoyed the opportunity to see what some of our children are learning and how they are taught. Some aspects of the school were fantastic. The verbal children are recieving a good education, the therapists seem to be excellent and the teachers were kind and really try their best with the kids. I wasn't happy with the quality of the education for the handful of very bright but non verbal children but that's a post for another day. 

During my visit to the school was the first time I have really been hit with the unfairness of what these children are living with. In the UK or America these children would all get an education. They would be in mainstream school, a special needs school where, most likely, there educational needs would be met,  or they would be homeschooled. I know that parents of special needs kids at home can spend long hours advocating for their child, fighting for what they deserve. The children here don't have that. They have amazing foster parents but they do not have the time to spend many hours advocating for their children to have access to things that may not even exist in India. It's just not fair.

I know that what they receive at SCH is a million times better than what they would get at the government orphanage. I am reminded of that every day when Tricia, who didn't talk, hug or make eye contact when she arrived a few months ago, yells 'good morning sister!' And throws her arms round my waist. I am reminded when Molly uses her communication book to tell me she feels sick or when we take the children to the park to play. It is a massive improvement but it's far from a perfect situation. 

I have seen the fantastic work of special needs schools in the UK. Children who here are deemed 'unteachable' here learn to read and write at home. My hope, for all these children, is that somehow they can receive the education they deserve.

All about Molly

I've been struggling to know what to write recently. The novelty has worn off and the heat means I have been totally lacking creativity. I have decided to introduce you to one very special young lady. 

Something about Mol had me immediately. I don't know if it was her joyful smile or her beautiful eyes but i knew she was a child I wanted to work with. So much has changed since those first weeks.

At the beginning, it was all about playing with her. We read fairy tales I wasn't sure she understood, made various princess related crafts and attempted to play board games. I knew she was bright but I didn't realise until much later just how clever she is. In a way, I regret not beginning to work with her properly earlier but I realise that the time we spent together just playing was important. I learnt how she communicates, I started to see how much she could understand and it gave me the chance to think about what I wanted her to learn. I can safely say she has supassed my highest expectations. 

At some point I realised just how bright Mol is. I started working on reading with her using matching puzzles. She could do them all instantly. I was concerned she was only reading the first letter so I gave her options starting with the same letter and she still did it with ease. I googled how to teach non-verbal children to read. I followed the instructions anticipating it would take at least a week for her to be able to tell me a word on a flashcard independently. Boy was I wrong. I showed her once and she was off. Of course she made a few mistakes now and again but she was reading 90% of them correctly. I continue to work on reading with Molly every day, now working on sentences and grammar. I am slowly learning to abandon any expectations I have of her and just see what she can do. I have been doing an activity this week wich involves choosing a word to complete a sentence. Initially I was reading the sentence to her and just getting her to read the options for the missing word. Yesterday I decided not to read the sentence to her. She completed the sentences with the same accuracy as when I was reading them to her. This girl will go on to achieve so much, I can't wait to see what.

Molly brightens my day every time I see her. Her whole face lights up and she grins from ear to ear. She has the best laugh and cracks up when I pull faces at her or pretend to do something stupid (or actually do....). She's a very sensetive child. She cries when something happens she doesn't like and she starts tearing up if I make a joke about going somewhere without her. It's in those moments I can see the scars from her childhood and I realise yet again just how amazing this young lady is. 

Her communication skills have just exploded recently. Every day she says something that makes me laugh. Today she used her communication book to say 'me, drink, you, please'..... She was asking/telling me to get her chai wich is normally just gives to the adults! I got her some and she was thrilled! She has also learnt to trick me. I was looking for he book we were reading together and had just given up when she said 'book, behind' then looked at the door. 'Is it behind the door Mol?' With a very serious face she nodded yes. As soon as I pulled back the door, she burst out laughing! She thourght it would be a great way to get out of school work. This girl has such a big personality. 

I like to think that I am making a difference to her life. I hope she can continue to communicate so effectively once I leave and that she will have many more words at her disposal. I hope that she can read well enough that she can occupy herself with a book and learn about all the things I would like to teach her but don't have the time to. But overall she is having a bigger impact on me. She has taught me so much about expectations. She has taught me about determination. She forces me every day to be more creative. She highlights how what we say does not always come from our mouths, that so much can come from the way we look at something or a gesture or a facial expression. She reminds me that people can do so much more if you give them the chance. I think back to that first month when I hadn't realised just how incredible Molly is. It makes me wonder how many people I don't give a real chance to. It is so easy to discredit people. To say that because they can't or don't do something the same way as other people they can't do it at all. I love Molly so much and wish I could bring her home with me. Instead, I will bring the things she has taught me home as these are thourghts that will be with me forever. 

Bumblebee cafe on Saturday. Lovely to relax and just let Molly, Lilly and Nolan play together with other children.

She's getting so good at counting! All I needed to do was help her move her finger!

The first book she read by herself. Can't be sure she read every word correctly but certainly enough to answer my questions.