My bookworm

Matt and I were driving to visit a friend today. As Matt had been particularly quiet for a while, I turned to check that he was doing OK. And this is what I saw...

My heart melted at the cuteness of the little feet sticking out the bottom of the book, and the small hand holding it in place so efficiently.

Our Christmas Elf

Haven't got all your presents yet?

Here is an idea if you are needing that last present but you can't bear to face the heavy traffic and maddening crowds - how about giving a donation to a Very Worthy Cause on behalf of the person to whom you want to give a present. Often we end up buying family and friends presents that they don't need (and may not even want??). By giving to a Very Worthy Cause you not only bless the ones who are in desparate needs of funds , but you also warm the heart of the your family member who knows that their "gift" is making a tangible difference this Christmas.

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/.

Even if you have all your presents sorted and are not looking for a last minute gift, it is worth checking out and remembering the next time you feel prompted to want to make a difference in this world.

My prayer is that the memory of this young boy Nathan will never fade from those who knew him, but will continue to inspire us to find the good in all who we meet and motivate us to reach out to those who may be struggling to live in a world that has not been designed for them.

May you all have a blessed Christmas

The last physio session of 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.

Hello hello? This is Matthew speaking...

and I am sitting with a nice straight back as I am talking on the phone.

We are learning to walk side to side, with one foot in front of the other.

I was not sure about crawling into this tunnel,

and now that I am here I am not so sure I want to be here???

Look at how nicely I am sitting on the chair.

I just LOVE building the dolphin puzzle with Pam.

Wow! Look it is all done!!! What a big puzzle we built.

This has to be one of my favourite activities: throwing the ball!!!!!!

Even though this picture looks like I am catching the ball, it is actually me throwing it to Pam. After she catches it she rolls it back to me.

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

PECS Phase II and III

Our lives have been quite full this last week so blogging has dropped a few notches in the priority list. It has almost been a week now since we have been introducing Matt to the next two phases of PECS. Last week Friday we had a session with Julia, our Speech Therapist. She was very pleased with Matt’s progress and was happy for us to move forward with the training.

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.

Your comments are so precious to me

Thank you to all of you who comment on my posts and share with your thoughts. I appreciate each and every one of them. Often they have been a real encouragement to me during tough times.

Following my previous post I was particularly touched by the words of a mother who is a bit further down this RTS road than I am. Her name is Terri and she too has a blog (I highly recommend you check it out if you haven't already)

I don't know how many of you read the comments made by others, so I thought I would put Terri's words here as they are worth reading and sharing:

"I have a lump in my throat for you because I can remember the fleeting beginnings of those feelings a long time ago. But I have not been visited by them in a long time.

As others have said, Matt isn't normal. If he were normal, he would be centered on himself and not engaging with others at every opportunity - which is beautiful. Like Addie and Natalie and Caden and many others, he reaches out in sweeping simple ways, ways that make people feel special themselves, feel like they deserve the focus they are getting. Over the years, so many people have confided in me that Addie and themselves have a special sort of relationship and they they really seem to "get" each other. I do not tell them that she makes everyone feel like that. I leave the fact that that is one of our highest ranked prides in our sweet daughter unsaid. Interestingly, it doesn't so much draw attention just to Addie herself, but to our humanity, to what is really the basis of our connection with each other. It teaches people about who they themselves are, reminds them of their worthiness. Matt is giving people a great gift. The fear is just a hurdle for you. You'll jump it when you can and never look back until you read a blog post like this one by a young mother one day..."

My social butterfly

I have a confession to make - not something that I am proud of. But I am hoping that as I write about it I will find healing.

My Matt is becoming more and more social. When we are in the supermarket he loves connecting to people - making eye contact or a cute sound to draw their attention, sometimes even reaching out to them with his hands. He particularly loves having "chats" with those in the check out queues and those behind the tills. Now as a mother you would think that I would just delight in those moments. And a big part of me does, but there is another part of me that is wishing Matt wouldn't draw attention to himself. I have been pondering this reaction of mine - trying to figure out the root cause of this. And here it is - FEAR. I fear that the person Matt is "chatting" to will discover that Matt isn't "normal" and then they might think less of him or reject him.

I realise that I can't protect Matt from the world and I can't keep him in a safe bubble. I know that I have to let him make friends even though there is a risk of hurt and pain. I am praying for strength to let go and let Matt interact. I know oneday I will have to walk with him through the sorrow of rejection, and I am praying that I will have the strength for that. I am also praying that until that day comes I will not live in fear, but rather be free to delight in my little social butterfly as he spreads his wings and warms the hearts of strangers.

Shhh, don't tell yet

Two interesting things have happened this last week.

Firstly we have started "brushing" Matt - and I am not talking about his hair and his teeth. I am talking about brushing his body. A good friend of mine, who is an Occupational Therapist, introduced me to this. The brushing provides deep pressure which can help the child with his sensory modulation. And what is this you ask? Sensory Modulation "is the ability of the nervous system to regulate, organize and prioritize incoming sensory information, inhibiting or suppressing irrelevant information; and prioritizing and helping the child focus on relevant information. Children with problems modulating sensory input may exhibit difficulties with learning, social relations, behavioural and task organisation, attention and purposeful interaction with the space around them" (Katz and Bailey, 2005)

We have noticed with Matt that he tends to shake his head alot and do other odd movements. We were wondering if this was a sensory thing and that is why we were open to trying this brushing thing.

This is what the brush looks like:

The idea is to brush his arms, legs and back at regulary intervals during the day. The first time I did this I was so surprised by how calmly Matt sat and it looked like he was loving it. In fact when I finished brushing his back he lay down again and looked up at me as though he was saying "more please". For the last 4 days I have been brushing him at least 3 or 4 times a day and each time he has enjoyed it. It has become a bonding moment for us. But the best news of all is that his falling asleep has drastically improved from the first night that I had started the brushing. I must acknowledge that we have been doing a variety of things to assist him to sleep (getting a night light, gently training him to sleep) so I can't say his improvement in sleep is 100% due to the brushing. But I am still impressed with the impact it has had on Matt.

Secondly Matt has started walking but we must pretend he hasn't. Matt is able to walk a distance of about 3 meters as long as my finger gently rests on his one shoulder (providing no physical assistance, only moral support). However the minute we get excited about his steps or praise him, he sits down and stops. It is as though our praise puts too much pressure on him to perform, maybe it even makes him scared to fail and disappoint us, so he opts to not try any more. So although we are jumping up and down on the inside, we have to make as though we are not noticing - and then he is happy to continue taking steps. On Friday he initiated the walking by himself - from me to a friend, a distance of about 5 steps. We all just sat there calmly pretending that it wasn't a big thing - although with our eyes we were all communicating great celebration. I am struck by the enormous impact the psychological side has on our physical abilities. So keep this a secret until Matt is ready for the world to know that he can actually walk.

Life is

Life is an opportunity, benefit from it.
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

PECS Phase 1 Update

I am really enjoying this PECS journey with Matt, even though it is early days. Matt is getting to understand the basic steps of PECS - I see what I want, I pick up the card and put it in the persons hand, I get what I want.

It does feel a bit artificial at the moment because we are sitting Matt in front of the "communicator" who has a very fun toy or food in hand, and Matt only has one choice of card in front of him. But I know that this is like any other training. I remember the training we did in my high school netball team. All the skills that were required in the game were broken down into components and then practiced in isolation. So we didn't just learn the game by playing it, but we did loads of drills...passing the ball, running, sprinting, jumping etc. So it is with this 1st phase in PECS - we are practicing a few skills which later will be added to others in order to form an effective communication system.

This last week I recruited my mom and two friends to assist with the process. I learnt quickly that I needed to explain things really clearly and that I should not to be afraid to correct those working with me. That way Matt gets the same experience of PECS as he does with Lloyd and me. And my new recruits did great! I was thrilled. I was surprised how Matt adapted to using the PECS process in two new environments as I took Matt to my friend's houses to do it there. Despite other toddlers toddling around and other potential distractions he engaged with the cards well.

What I have learnt so far:

It works best when Matt really wants the item, as opposed to being mildly interested in the item. So we've had to make up some more cards of his latest favourite items. The more motivated he is to acquire the item, the more motivated he is to learn PECS.

Our biggest struggle:

Matt finds it hard to remove the card that has been velcro-ed to the communication board when the board is not attached firmly to something else. Even though I show him to put his other hand on the board and lean on it, whilst lifting the card, he can't quite get it right. So he struggles to separate the board and the card - and gets frustrated. I will need to get advice from our speech therapist on this issue.

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It is hard to take a photo of the PECS process in action as both Lloyd and myself are involved. But here are some photos of Matt playing with his puzzle after having asked for it using PECS. He likes showing us the puzzle pieces.