Friday, March 27, 2009

Generosity in Unexpected Places

Sunday was a special day for me – Matt and I were sitting on the nice carpeted floor at the back of our church. Lloyd was working at the hospital so it was just Matt and me. I was feeling quite down and hadn’t managed to share my heart with anyone on the way into church.

I had spent most of Saturday night in tears – I can’t pinpoint what was making my heart hurt. Was it that I had been contemplating this “retard” word and what it might mean for Matt’s life (see previous post)? Was it the very healthy conversation that I had had that afternoon with a good friend about her children and how I feel when I am around her typically developing children? For some reason all these things really affected me and I felt really sad. I haven’t been this sad in a long while. In fact I was so sad that on the Saturday night I stayed away from attending a friend’s 21st birthday party – I just couldn’t face putting on a “happy face” and pretending like everything was fine. So I stayed at home and had a good chat and cry with Lloyd – he is a very good listener.

On Sunday morning I woke up feeling a little better but I still felt like I had this shadow hanging over my heart. I knew that the only way I could find peace was to get to that place where I truly believed that God loves Matt more than I do, and that God will watch over Matt in ways that I can’t.

So there we were on the floor in our church. Other toddlers and their parents hang out there too. Half an hour into the service Matt shows me the sign for “eat”. I then realised that I had left his snack biscuits at home. I tried to explain to him that I didn’t have anything for him, but he didn’t really understand. He just kept repeating the sign and looking at me with his big eyes wondering why I was not responding with food. I felt like a really bad mom and this - added to my other feelings of sorrow - meant I was fighting back tears.

About 5 minutes later another little boy comes over to play with Matt. And before I know it he pulls out a little packet of 3 biscuits. He opens it and promptly offers Matt one. Matt accepts it with delight. I was so moved by this little boy’s action – he did it completely on his own, without any adult telling him to “be good and share you biscuit”

You need to understand that at my church there is a huge mix of people from different backgrounds – racial, language and economic. I know that this little boy’s mom is unemployed and she joined our church through attending the HIV AIDS support group. I know this little boy’s life is not easy. I wonder if what he shared with Matt was his breakfast for the day. Yet God moved his heart to share what he had in order to meet Matt’s need.

That gives me so much hope for Matt’s future. This little boy’s act of kindness has shown me that there is humanity and generosity in the most unexpected places. I felt like God was showing me that He will provide for Matt in the moments that I can’t, because He really does love Matt with a love that I cannot grasp. Something inside me was healed, the sorrow lifted and my hope was restored.

Sunday, March 22, 2009

I want so much more

I have been thinking a lot about this word “retard” lately as there has been a growing movement of people who are asking for the use of this word, other than medical, to be stopped. I agree 100% and have signed up on the following website to show my support. I like that this movement is calling for a new word - RESPECT.

As a mother of a child who has mental retardation, the misuse of the word “retard” is so frightening. It represents an attitude in people that highlights the potential for my child to be ridiculed, shunned and hurt by people.

It is not that I am frightened that Matt will be physically wounded one day. Although it still happens that people with intellectual disabilities are physically and sexually abused, that is generally frowned upon by society. People say that that is a BAD thing and should not happen. Laws are in place to punish such prejudicial actions. People are quite supportive that people with intellectual disabilities be treated with dignity.

The misuse of the word retard makes me fear that Matt will one day be lonely. Because although people will mostly say that a person with an intellectual disability should be protected and respected – that is as far as it goes. In a real-life encounter people still tend to be uncomfortable around someone who sees the world differently and responds in ways that do not fit into the norm. We all like to be around others who are similar to us. And that really frightens me. I do have this fear that one day when Matt is older – when he can’t charm people with his adorable cuteness anymore – that he will be lonely because

...although people will tolerate him, they won’t necessarily include him;
...although people might talk to him, they won’t necessarily be his friend;
...although people might sit next to him at church, they may never invite him to their homes;
...although he might be part of a group, he may never feel like he truly belongs;
...and although he might interact with people, he may not be loved.

And so I guess what I am saying is that I see the fight against the misuse of the word “retard” as only one tiny step. I want so much more. I don’t want people to just stop using the R word…

I want to see hearts change
I want to see the fear of “the other” evaporate
I want to see open arms
I want to see authentic celebration of differences
I want people to look for how Matt can contribute, rather than look at the ways that he doesn’t fit in
I want to see people being brave and stepping out of their world view to take glimpses into other’s views
I want to see people to value the flavours that diversity brings, rather then guarding uniformity.

Thursday, March 12, 2009


Something remarkable happened yesterday. But to understand just how remarkable, I need to give you some background. For as long as I have known Matt he has hated grass. Before he was able to move around himself – when I put him on grass, he would lift his legs high in the air and balance himself using his incredibly strong abdominal muscles. He would desperately try to reach for us, crying until we picked him up off the gruesome grass.
Nothing changed when he started crawling. When placed on grass he would just sit there, legs and arms in the air; crying. We tried when he was wearing shoes and long trousers – but he was still terrified. When he started walking we thought he would tolerate it more – we tried to lift him onto the grass holding him in the standing position. No ways! As we lowered him down to stand, he would lift up his legs and wrap them around our legs refusing to be put down.
Unfortunately for Matt we are quite the picnicking family and often we go with friends to a nearby botanical garden. A typical sight is of Matt sitting and playing on the picnic blanket whilst all the other toddlers are crawling or running around chasing balls and butterflies. Matt gets really frustrated because he would love to be moving but from his perspective he is surrounded by this sea of spikey, prickly, itchy, tormenting grass. So instead of partaking in the joys of play, he contents himself with sitting within the safe boundaries of the blanket.
I was beginning to despair that Matt would forever be repulsed by lawns. I wasn’t at all hopeful that we would see any change soon. Yesterday Lloyd and I were playing on the grass and we invited Matt to join us. As we usually do we tried to give him a opportunity to see that “grass can be your friend”, that is we physically sit him on the grass with us. At first Matt responded in his usual way – legs up, hands up, and tried as fast as possible to scramble onto dads lap without having to touch the gross green stuff.
But then something happened…I am not sure what exactly happened. I have tried to think long and hard – did we do something, did we say something??? I have no answer. But what I can tell you is that Matt started walking on the grass from mom to dad, from dad to mom, over and over, with the distance increasing and increasing, he just kept walking. He was a bit unsure but also remarkably pleased with himself – and he just kept going. If he tripped, he would just calmly use his hands to pick himself up and keep walking. I can’t describe all that was going through my heart and head – shock, delight, astonishment, joy, pride, happiness, and puzzlement. It is fantastical and a complete mystery, I can’t explain it at all.
Today he showed us that his new found friendship with grass was not just a once-off fling, but it seems to be a budding long-term relationship…here are some pictures to prove it.

Wednesday, March 11, 2009

The mystery of people with disabilities is that they long for authentic and loving relationships more than for power. They are not obsessed with being well- situated in a group that offers acclaim and promotion. They are crying out for what matters most: love. And God hears their cry because in some way they respond to the cry of God, which is to give love.

Jean Vanier in "Living Gently in a Violent World," p. 22