Monday, December 29, 2008
Tuesday, December 23, 2008
And, although I know of many worthy causes, one has been on my heart for the last while. Remember I wrote about another mom's blog that I had been following. Sadly her precious son Nathan passed away this year. She and another mom who also has lost a child have started a website, called A Random Act Of Kindness (ARK) to raise funds to assist parents who are caring for kids with Cerebral Palsy. Here is the link to the their website: http://www.arandomactofkindness.co.za/.
Friday, December 19, 2008
Last Monday was Matt's last physio session for the year.
Here is what Matt thought about it...
Just look at the delight on Pam's face as I show her that I can do exactly what she is asking me to do: Walking on knees, pushing the truck with hands correctly around the sides of it.
Wow! Look it is all done!!! What a big puzzle we built.
Thanks Pam for your caring work this year. I hope you rest well over the festive season so that you can be ready to do more fun activities with me in 2009. Love Matt
Phase II, aka Distance and Persistence, is very similar to the first but now the Communication Partner (the person to whom Matt needs to hand the picture) slowly moves further and further away from Matt. This means Matt has to travel with the picture card. Because he is not walking yet he crawls with 3 limbs whilst his other hand holds the card – we have named this “tripod crawling”. He manages surprisingly well, though it looks rather funny. The Communication Partner also pretends to ignore Matt so he has to get this person’s attention by making a sound or by touching them. Matt lets out a determined squeal to let you know that he is there. As with the Phase I, a second person is needed (the Physical Prompter) in order to assist Matt with the task of picking up and handing over the card.
We have also started Phase III which is all about teaching Matt to discriminate between the pictures. Phase III has two parts to it. In the first part one person works with Matt by placing two pictures on the communication board whilst holding the two corresponding items. The trick here is to have one item that Matt really wants and one item that you know he is not at all interested in. If he picks the picture of the preferred item you hand it to him, label it and praise him. He is so chuffed with himself when this happens. If he chooses the picture of the non-preferred then there is a whole detailed process (called Error Correction) to teach him to look at the pictures and choose the one that he wants. The Error Correction process has been worked out really well by those who designed this whole PECS thing. It is quite complicated but with a little bit of practice I am getting it. And when it is applied as recommended it really works. In one week I can already see Matt looking at the pictures and choosing the one he really wants. He is seldom making mistakes any more. We will keep working on the first part of Phase III until after Christmas.
I must say that I am loving my PECS interactions with Matt – it has become a fun, bonding time for both of us. Matt enjoys it too and he actively chooses to participate – so it feels like he is a partner in the goal of finding a way to communicate.
Thursday, December 18, 2008
Saturday, December 13, 2008
Saturday, December 6, 2008
Wednesday, December 3, 2008
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.
by Mother Theresa
Monday, December 1, 2008
Thursday, November 27, 2008
On Monday we took Matt to the aquarium. It was his first visit. He sat snuggling in our arms and slowly looked at the fish swimming in the big glass tanks. He showed real interest in shiny silver fish and he also seemed to like the very large fish. The small jelly fish also kept his attention. After our stroll through the aquarium we went to the adjoining restaurant for a snack. There they had a kiddies play centre with various slides, trucks, and other fun toys. There were 4 other toddlers in the play area with Matt and me. Matt was slowly exploring the dog-shaped chairs whilst the other kiddies were up and down the climbing frame, running to and fro, and whizzing down the slide. I was watching them and I realized that I didn’t feel that sorrow that I used to feel – I wasn’t thinking “I wonder if Matt would have been like them if he didn’t have this syndrome”. In fact I was quite overwhelmed by their busyness, their loudness, their up and down and forward and backwards. I was reminded of those movie scenes where the main character is in focus and moving slowly while the rest of the scene is sped up to give the impression of the world rushing past the main character. That is how I felt. Matt and I sitting in a peaceful bubble and these other kids were just whizzing around us. I wonder if I am getting used to being in Holland and starting to really appreciate the slower pace.
I have been thinking about that this week and how best to describe the difference in our journey when comparing to typical kids. It is like comparing a road trip to a hike. On a road trip you can go a long distance and you see many different places. On a hike, the distance covered is not as extensive but you still get to see lots of things. You get to experience and discover things that you would surely miss if you were driving past in a car. I like the fact that Matt and I are hiking through life – he is showing me the pretty rocks, the interesting leaves, the funny looking bugs, and the cute little flowers of life that I haven’t ever noticed before. Sometimes I do still miss the rush of life in the car. Sometimes I look at my friends going places that we won’t get to in a while and feel a bit down. But mostly I like that fact that I have stepped out of speedy world of cars and am now learning to meander through life and enjoy the sights and sounds along the way. Yes I think I am finding a home in Holland.
Monday, November 24, 2008
everything from food items to toys to eating utensils.
Each photo has a piece of velcro behind it and
this helps it to stick to the communication board (bottom left).
Matt seems to be getting the hang of the whole exchange thing. However he does need to be reminded to pick up the picture rather than just reach for the item. And he struggles a bit to get picture off the velcro as it is stuck to the communication board. But once he has it in his hand he is happy to pass it to the communication partner.
Saturday, November 22, 2008
Paul writes in 1 Corinthians v 9 & 10 "...God said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I (Paul) will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
Look also at Moses and Gideon who achieved amazing things, they both started by telling God that He had got the wrong person for the job. Look at the people Jesus called as disciples - they certainly were not called because they were superamazing people. God calls ordinary people to do extra-ordinary tasks - but here is the thing - we do those tasks WITH God, in HIS strength and by HIS power. It is not something we achieve on our own.
- visiting or phoning to see how she is and letting her talk if she needs to,
- sending her text messages or notes of encouragement so she knows that she is not alone,
- making a meal for her family so that she has time to rest,
- babysitting (even for a short time) so that she can have some space to catch up with herself or her husband,
- actively praying for her, her family and her child
- when you are going grocery shopping, phoning her and asking if you can do hers at the same time (I'm not talking about you paying for the shopping, but the act of doing to shopping so she has more time)
Wednesday, November 19, 2008
by Sr. Sue Mosteller, L'Arche Daybreak and Henri Nouwen Legacy Trust
Monday, November 17, 2008
Wednesday, November 12, 2008
I completely disagree with Anonymous, yet I am glad that someone has had the courage to put into words what so many think. That way we can discuss it and debate it. The deep issue that Anonymous raises is actually a question of "what is life about?" and "what makes life worth living?". I think this question is worth considering, because it forces us to examine our values and beliefs about all life.
Our kiddies call forth from us compassion, kindness, humanity, joy, selflessness, and respect.
Our kiddies teach us to love and about love, and if we let them, they open the door to God’s love for us.
Our kiddies are greatly honoured in God's kingdom.
Our kiddies will be welcomed as heroes into heaven one day, and will be heaped with heavenly reward for the way that their lives were used by God to transform those who know them into softer, kinder and warmer people.
In 1 Corithians 1: 27, I read “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.”
In the light of this I can understand why many in our world might be confused about the purpose of our kids' lives - God’s ways don’t make sense. It is rather upside down that God should pour so much love and value into these little people whose bodies (and minds) are weaker. God says our bodies are tents – temporary shelters. Whilst God cares for our bodies and our health, he does warn that is our souls, and not our bodies, that will last forever. This is a wake up call to societies that are obsessed with "the beauty of the body" and the "power of the mind". It is a call to be more concerned about those who have souls with disabilities rather than those who have bodies and minds with disabilities.
Many in our world believe that perfection, success, achievement, independence and wealth is what life is all about. If you hold to that definition our kiddies life may not seem worthwhile. God says life is about love, compassion, interdependence, community and selflessness. According to his definition all our kiddies lives are precious and valuable.
Let us rather choose to celebrate our humanity and the diversity of all who live on this planet. Let us support each and every person to reach their full potential.
Let us recognise that each and every person has something to give.
Tuesday, November 11, 2008
Friday, November 7, 2008
Wednesday, November 5, 2008
Is this just a stage? Has he realized it is more fun to be awake than to sleep? Or is there something seriously wrong? Will he ever want to sleep again? I go in cuddle him, he settles. I leave, he cries and screams. And so it continues and continues.
I feel defeated and tired. Then the resentment creeps in – I feel like I give him so much of my attention and love throughout the day, I really would like some time for me in the evenings. I would love to have an hour to just chat to my husband before my brain becomes a fuzz of tiredness. I resent the fact that my evenings are dominated by the little cry monster. It is so hard to plan evenings out because by the time we settle him it is so late. We haven’t had supper before 8pm for weeks, and if we eat at 8pm then that is a good night!!! It is amazing how helpless and lost I feel in all of this. Add to that a good dose of confusion and guilt. Parenting can be really tough!!!
Sunday, October 26, 2008
I liked how he drew on people’s stories and experiences so that the book is not just a theological document. However he does not shy away from exploring the bible and it’s perspective regarding suffering. I found Philip Yancey’s thoughts and teachings helpful in my own journey and would recommend it to someone who was grappling with suffering from a spiritual and Christian perspective.
Here are some passages that I am still reflecting on:
"Rabbi Harold Kushner cites an old Chinese tale about a woman overwhelmed by grief after the death of her son. When she goes to the holy man for advice, he tells her, “Fetch me a mustard seed from a home that has never known sorrow. We will use it to drive the sorrow out of your life.” The tale recounts how the woman goes from house to house, asking if the home has known sorrow. Each one has, of course, and the woman lingers to comfort her hosts until at last the act of ministering to others drives the sorrow from her life." (Page 193)
"A wise sufferer will not look inward, but outward. There is no more effective healer than a wounded healer, and in the process the wounded healer’s own scars may fade away." (Page 193)
How would the world be different if Jesus had come as a Superman figure immune to all pain? "What if He had not died, but merely ascended to heaven during his trial before Pilate? By not making himself exempt, but deliberately taking on the worst the world had to offer, He gives us the hope that God can likewise transform the suffering each of us must face. Because of His death and resurrection, we can confidently assume that no trial – illness, divorce, unemployment, bankruptcy, grief – extends beyond the range of His transforming power." (Page 231)
"I know well the helpless feeling of not knowing what I ought to pray, as I imagine every Christian sometimes does. (In the face of suffering…) What can we ask for? How can we pray? Romans 8 announces the good news that we need not figure out how to pray. We need only groan. As I read Paul’s words, an image comes to mind of a mother tuning in to her child’s wordless cry. I know mothers who, through years of experience, have learned to distinguish a cry fro food from a cry for attention, an earache cry from a stomach ache cry. To me the sounds are identical, but not to the mother, who instinctively discerns the meaning of the helpless child’s cry. The Spirit of God has resouces of sensitivity beyond those of even the wisest moth. Paul says that the Spirit lives inside us, detecting needs we cannot articulate and expressing them in a language that we cannot comprehend. When we don’t know what to pray, He fills in the blanks. Evidently, it is our very helplessness that God, too delights in. Our weakness gives opportunity for His strength." (Page 236)
To learn more about Philip Yancey and his books follow this link.