I think Holland is becoming home

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.

Ready Steady PECS

We have officially started training Matt to use PECS (Picture Exchange Communication System) as a way of giving him a means to communicate his needs, and hopefully oneday his thoughts too. PECS was developed for children with autism, and it has been found to works well with kids who have other reasons for speech delay. PECS does not inhibit development or distract the child from learning speech. Rather it has been shown that speech is facilitated through the use of this strategy.

On Saturday afternoon our Speech Therapist, Julia, arrive at our house armed with loads of laminated photos of Matt's important things.

Here are all the laminated photos - you can see they include
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).

Here are some of the photos paired with the items they represent.

We are starting Matt off with Phase 1: "HOW" to communicate. Here we need two people to work with Matt - one person is the communcation partner (the person who has the thing that Matt wants, e.g. favourite toy or food) and the other is the physical prompter (sits behind Matt and helps Matt to use the photo to communicate). So we are trying to teach Matt that in order to get the desired item he needs to pick up the photo off the communication board and pass it to the communication partner.

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.

The key to this first stage is to have the 2 people so that the communicator is not prompting Matt as to how to use the pictures. I was so excited to get this going as I know Matt is just bursting with things that he wants to tell us. Poor Lloyd was very unwell on Sunday and didn't want to share his germs with Matt so we didn't do any PECS practising. I found it hard to focus on being loving and caring whilst nursing my husband, when all I wanted to do was to get going with Matt's communication.

Lloyd being unwell got be thinking about broadening the number of people who can help me with Matt during phase 1 so that it isn't just up to the times when Lloyd is available. So am going to put together a small team of various friends and family to help with this Phase 1 training.

Watch this space

Walk with me

I recently read another mom's thoughts on the frustrating moments when people tell you that God must have thought you to be a pretty amazing person who could handle a kid with special needs so that is why he gave you one. They say that God doesn't give us something that He knows we can't handle.

I have heard this too and although I acknowledge people's motives good - they are wanting to be encouraging - the statement is actually very unhelpful. It can make you feel guilty because you know you aren't particularly amazing, and it can make you really question God. Not only is it an unhelpful statement, but I don't believe it is true from a biblical perspective. Ironically it is most often said by Christians.

I believe that good and bad things happen to all people. I believe we have a choice as to how we respond. If we welcome God into our lives and journey, we then have access to His mighty resources. The fruit of the Holy Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and selfcontrol (Galatians 5: 22-23). These things are in our lives because God lives in our lives, not because we are superhuman. So when people look at my life and the task of raising Matt - and they think that they couldn't do it. They must know that I can't do it either. It is only by God's strength, grace and the fruit of His Holy Spirit that I am loving Matt and caring for Matt in the way that I do. (Not that I am getting it right all the time - I am still learning to receive God's strength for all the challenges) I believe that any person can receive that strength from God too - it is not because I am particularly amazing, it is because God is.

I also don't believe in the statement that God doesn't give you a task that He knows you can't manage. In fact my experience of God is the opposite - I believe He calls us to tasks, visions and dreams that are way beyond our own resources.

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.

God does this so that He can surprise us and the world with His glory and His power - so that when the task is done no-one will be in doubt that it was only achieved by His hand. And then people will be drawn to Him.

In the light of these truths, it would be more helpful for people to acknowledge that the task set before a mother of a child with special needs is hard. Rather than encourage her that she is super-amazing and she should continue doing it on her own, tell her to throw herself into God's arms for help.

Jesus said: Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Matthew 11: 28-30)

It would be helpful if people - specifically Christians - truly realise that they are the hands and feet of Jesus here on earth. So every time they do something practical for a mother with a kid who has special needs, God uses that to make her burden lighter. By practical I mean:

• 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)

Thank you to all of you who have reached out to me or to another mom who kas a kiddie with special needs. I know that it takes courage because it is awkward and often you don't know what to say. I know that you don't want to offend. I know that it is easier to hold back or stay away. I want to you know that I would rather have someone reach out and say something stupid than keep away. I will not hold it against you because this road is new for me too and I too am learning as I go along. If you are really brave you can ask me how best to support me and I will share with you. But whatever you do keep walking with me - you will never know how much it means.

Isn't it Obvious?

I receive weekly stories from the L'Arche community - here is one that touched my heart:

"I visited Ukraine with my friend Joe. In the children's ward of a large institution for people suffering from intellectual disabilities and mental illness, a hyperactive boy around six years of age was running about the room from one activity to another. When he saw us, he ran headlong into the open arms of Joe, who held him a second and then stooped down to hear what he wanted to say. "I'm a beautiful guy!" he said. Joe then asked him through the translator, "How do you know that's true?" Without missing a beat, the boy responded, "Can't you see? It's obvious!" Living, as I have for the past thirty-five years, with people with intellectual disabilities, I've been learning from them what it means to have a high HQ (heart quotient). It has to do with looking for signs that we are loved, even if we have to ask, then embracing those who love us in a long embrace, and finally claiming that we are, in all truth, beautiful. Isn't it obvious? "

by Sr. Sue Mosteller, L'Arche Daybreak and Henri Nouwen Legacy Trust

Where there is life there is love.

- Ghandi

What is life about?

This morning I read what Jessica (mother to precious Alex) wrote in response to a comment that Anonymous had left on another mom’s blog. Tamara has a sweet daughter who was born with severe health and developmental issues. Anonymous left a comment that criticized Tamara for not aborting this child in order to spare this girl a tough existence, calling Tamara selfish for using religious motivation to keep this child alive.

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.

We live in a world that worships "perfection" so much so that we do strange things to our bodies to keep looking perfect, yet we neglect our souls and end up doing terrible things to each other. We live in a world that worships the attainment of wealth and the ability to dominate so much so that half the world are squashed down by the injustices of the other half. Our world is slowly becoming dangerously hardened and cold as we become more and more focused on self preservation. In the light of such a world our kiddies don't count for much because their very existence challenges the foundations of such a society.

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.

I also shudder to think what our world would become if we follow Anonymous' logic and thinking to it's next step. So we terminate children whose lives don't measure up to some criteria of "normal". What do we do then when someone has a car accident or other tragedy and their healthy body is paralysed or damagee, or their brain functioning impacted? Do we terminate their lives too, because now they don't fit with the criteria of "normal". And then where does that definition of normal begin and end, do we start terminating those who stutter, limp, where glasses or braces because they too aren't fitting into the "normal criteria" and they aren't perfect in every way. This is dangerous thinking with dangerous implications.

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.

Let us learn to love and receive love.

Penguins and Friends

This last weekend we went to Betty's Bay (about an hour outside of Cape Town) with some friends. Matt got to see some penguins and play with some new kiddies.

Matt was interested in these black and white birds that had a funny way of walking

Look at the many penguins!

Did I mention that it was very windy!!!!

Meet Ruth aka Rufa, Uthie, Rutha, and Ruthanator

Emma maternally wiping Matt's face and Matt finding it quite pleasant. Very cute.

The view.

Playing cards....snap.

Matt was wondering what was so fascinating about these card things. Emma, on the other hand, was intrigued.

Our lovely friends - Paul and Petra with their two princesses - Emma and Ruth.

Thanks to Richard and Heather for your generous hearts and warm hospitality. It was great to hang out with Timothy

Compassion

Every Friday morning I meet with two women at our church. We share, encourage each other and pray together for an hour or so. Matt comes along, of course. Most times he plays with toys, sometimes insisting that I play with him whilst I chat - it is a good thing that I can multi-task. He is usually not interested in us big people, but today was different. My one friend was sharing a difficult experience and was very tearful and sobbing quite loudly. Matt was quite concerned about this - he crawled up to her. Pulled himself into standing position in front of her and put his hand in hers, whilst looking deeply into her eyes. It was such a precious moment for all of us. My friend said she was really moved by Matt's act of compassion. I had tears welling up in my eyes as I watched my little boy sharing love with someone in pain. I am amazed at how God is already using him to bless others - even at such a young age.

Helpless...

Right now it is 8.39pm and I am so frustrated. Lloyd is in with Matt who has been protesting sleep for the last hour. This has become a pattern for the last while – every night Matt looks sleepy. We put him down and he hums and sings for a little while. Then he just starts crying and moaning.

The internal battle begins…. Should I leave him to cry…or should I comfort him. I always end up comforting him eventually. I wonder if he is sore or in pain??? His teeth have been taking forever to emerge – could it be that??? I have given him some basic pain relief – but is that enough??? Does he need something stronger??? Are the pain tablets working yet – his digestive system is so slow?? I go in cuddle him, he settles. I leave, he cries and screams.

Is it that he is not tired??? No he woke up just before his lunch at 1pm. I go in cuddle him, he settles. I leave, he cries and screams.

Maybe it is his constipation – when did he have a poo??? No he poo-ed today so it can’t be that. I go in cuddle him, he settles. I leave, he cries and screams.

Is he thirsty? Did he have enough to drink today? I'm sure he did...but maybe not??? I go in cuddle him, he settles. I leave, he cries and screams.

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!!!