Matt woke up to butterflies

Matt loves butterflies so to celebrate his 3rd birthday we decorated our lounge with these beautiful creatures. Unfortunately we didn't have the camera handy when we woke up and found his favourite animals perching on walls, picture frames and light switches.

In the afternoon we had a small party for Matt. We intentionally (but with difficulty) limited invites to the children that Matt knows and sees regularly. That way Matt would feel most comfortable and would not be overwhelemd by a big crowd.

The girls took to colouring in more butterflies for Matt.

Matt loved the food!

Robyn, Bryan, Daniella and Georgia - thrilled you could come

Jono and daughter Anna enjoying the balls. Smiley Grant turned into the "monster" that later chased the kids up and down our house, much to their absolute delight.

And what's a party without presents.

Maurietta had kindly agreed to sing some of Matt's nursery rhymes which she did with great enthusiasm. She captivated the attention of children and parents alike.

Anna drumming on the box!

Mom singing along, Matt enthralled

Ethan and Dad Richard clapping along.

Old Mac Donald had a rabbit...

So so so entertaining!

Matt loved the fact that everyone was singing his favourite songs - he sat there, entranced, grinning, and completely forgot to use his tamborine (which he usually shakes with much gasto!)

Matthew - we celebrate your 3 years!

Am I being oversensitive?

It’s taken me a week to write this post. I have been chewing over my experience, wondering if I am over-sensitive or if I just see the world of special needs kids differently.

Last week I took Matt to a special needs school that runs a home-based preschool programme. This means that every month you bring your kiddie into the centre and they will offer advice on which toys and activities you should be doing with the child at home. In addition you can loan some toys for the month.

To join this programme ones child needs to be assessed using a milestone scale and cognitive test. I didn’t quite realise that this was required. So when Matt and I went their last week Wednesday I was taken by surprise. If you follow my blog you know that I have concerns about the way kids are assessed – I don’t see the point in comparing them to typical kids, and letting the parent know how far behind her child is. Rather I think the focus should be on where is your child at, what is the next step, and how to create a fun, exciting environment for the child to move there.

So there I was with Matt and the teacher. As it became clear that Matt was being assessed according to a scale used for typical kids I felt a nauseous. But I told myself that Matt was soon turning 3 and I should be older, stronger, and better able to deal with the outcome. Also the teacher doing the assessment was sweet and gentle. I could see that her motives were to see special needs kids progress and reach their potential. Though I didn’t directly express my concerns with the assessment, she reassured me that she believes in moving at the pace of the child allowing them to explore and discover. She was kind with Matt, and very generous with praise. I also told myself that we can’t hide from these assessments for ever, I may as well get used to them.

So I let the assessment continue. It ended with her reading out the results which were basically a summary of how delayed Matt is in the various areas of development. I can’t even remember the details – my heart was rebelling, not allowing my ears to hear or my mind to register the numbers, it was screaming out loudly that these measurements do not define who Matt is.

The days following that evaluation I felt raw. Like my protective layer has been removed and all the pain and vulnerability has been laid bare. I have been trying to unpack why I react to them so strongly. Here are some unfinished reflections…

Matt is so young to have to undergo so many evaluations. (And I know that Matt experiences less than some of his RTS siblings in other countries). His only worry in life should be what toy he feels like playing with, or how come mom hasn’t got his food ready on time. Not how many blocks this someone wants him to stack or stressing about drawing straight lines.

I have come to wonder how accurate these measurements are, and how do they take into account a child’s will; choice and timing. She would ask Matt to match two pictures of cats. But what if he decided that today he didn’t like the cats and was more interested in the picture of the house that has doors. (Matt loves doors) Does that mean he can’t match? And why should he do what she says, he doesn’t know her or trust her.

She would pull out a new toy to test some ability and sweetly coax Matt to engage with it. She didn’t give him breathing space to familiarise himself to the new toy. Sometimes he would oblige her by following directions and other times he wanted to first test the toy, get to know the toy, turn it, look at it, explore it. There was no time for that, either he used it appropriately or not. Either he could or he couldn’t. There didn’t seem like there was any room for any other explanation. I know I am being a bit harsh, but that is what it felt like. I just don’t think she got to know Matt or his potential.

And I don’t know how much of what was measured was Matt’s ability or if it is a measure of his level of exposure to that activity. Surely if you were measuring an ability you need to introduce the activity and give the kid time to learn how it works. You can see how they respond as they explore the toy. I think these assessments would work more effectively in a preschool setting where the teacher is with the child for a considerable length of time, and could see how the child engages with the toys or activities without the time pressure of an 1.5 hour assessment.

I have such a strong desire to protect Matt from this world of being measured and assessed and evaluated. Of having to stack and count and name and select. Of being gently and sweetly forced, coerced and manipulated into putting something into something else in the right order. Rather I want for him to try and see, to make a mess, to do things differently just for the fun of it, to test the various possibilities, to discover – even if it does take a bit longer, even if we can’t tick all the developmental milestones in the right order on the right time.

My last thought on this matter is that these evaluations seem to undermine the achievements and hard work that Matt has done. In our house every mini milestone is such a celebration because it requires much input, waiting, patience, wisdom, sensitivity, appropriate engagement, exploration, discovery, encouragement, and even more patience. This whole process is not recognised or validated, rather one is just left with a sense of what one’s child is NOT achieving.

And I think that makes me the most angry. I value Matt, and our life style of our celebrating too much to let it be spoilt by comparisons to typical kids and defining Matt by what he can’t do. I don’t know how I am going to survive this world of working with kids of special needs, I just seem to see things so differently.

Having a ball

Matt's recently underwent an Occupational Therapy assessment. I had shared with the OT that I was not interested in having Matt compared to typical kids in terms of his milestones, but that she should rather help me understand where he is at, where he is heading towards, and what we can do to help him get there. And that is exactly what she did - so we are now armed with lots of fun and creative ways to partner Matt in his development. The first idea that we put into practice can be seen below. A very simple design - just an old ball pushed into an old pair of stockings - and the result is hours of delightful entertainment.

Matt literally laughs out loud with joy as he plays.

My song

Matt has been unwell for about a week now. High temperatures, vomiting and diarrhoea. It looked like he was getting better on Sunday, but on Monday afternoon the fever struck with a vengeance. We started him on antibiotics. Tuesday we saw no improvement – in fact most of the day was spent keeping his temperature down as it would climb high the minute the meds wore off. Today he was diagnosed with tonsillitis. Now we know what we are dealing with and have adjusted his antibiotics appropriately. I am hoping the high temperatures will pass soon.

It has been tough for Matt – he has really been feeling unwell. He has been so droopy and clinging. I can’t explain to him what is happening to him, so on one level I have felt frustrated. But on the other hand, since I cannot rely on words for explaining, I have discovered a very precious way of communicating comfort and reassurance to him – through song. My song. Now I am not a great singer by any stretch of the imagination, yet my simple tunes, though sung in a slightly off key manner, seem to really touch him. On Monday night he woke up with such a high temp that he was shivering so violently that he could hardly move his limbs. Whilst we were waiting for his temperature to come down, I cuddled him on my lap with his head against my chest. I could tell that he was tense and confused about what was happening to him. I started singing and immediately he calmed him and snuggled in closer. He knew that he was safe. I know he felt my love and care for him through my song. Music has many values, but over the past few days I have seen its visible effects on Matt’s body. I have been struck by what an amazing gift music is to us as humans.

A Matt look-alike

Last week Matt and I met a tiny little baby called Samuel. He has a full head of hair – dark black. He has a big red birth mark on his forehead. He has the cutest face. He has thumbs that are elegantly angled outward. He looks like a new born Matt, only smaller. He looks like he could be Matt’s younger brother. In some ways he is.

Yes I finally met another child with Rubinstein Taybi Syndrome. This was a day I have been longing for and dreaming about for a long while.

Last week Thursday Samuel came to visit us with his mom and dad. I had been in telephonic contact with them for a few weeks and finally things worked out for us to meet. I know that Sam’s parents are still trying to find their way in "Holland" and so they were probably not so excited about meeting me as I was to meet them. But for me it was so precious – knowing that we are not alone anymore. Being in physical contact with someone on the same journey – words can’t describe that feeling of camaraderie. I know our friendship will grow from here.

Pray for little Sam, who was born prematurely, and is facing a number of health challenges. I was so overwhelmed and so overjoyed at meeting them that I forgot to take photos. Hopefully we will be able to visit them soon and I can get some pics – so watch this space.

I will still hope

This last week has been fairly emotional for me. Nothing specific has happened – no big crisis or anything. But I have been thinking a lot about Matt’s communication. Last week I was looking forward to attending the second level training in Makaton Signing; yet at the same time I was also quite angry about having to go.

I really am thrilled to be finding a way of opening the door of communication to Matt. I love it every time he makes a sign. I love it – with a deep and wild joy!! I love the connection. But another part of me is not ready to accept the fact that Matt might not be verbal. I am such a verbal person. My life makes sense when I talk. My profession is about talking and listening. I build friendship through words – giving them and receiving them. Some people connect with others through touch, or doing something together – I connect through talking. It seems so crazy to me that I should have a child who might not talk.

My husband was wonderfully supportive, allowing me to vent and reminding me about how well Matt is doing. The truth of his words became clear for me on Saturday during the training session. I met a mother of a 5 year old who couldn’t speak; although he understands a lot. He hasn’t learnt to sign or communicate through gestures. He doesn’t even point – but if he wants something he will push his mom towards the thing that he wants. He is quite strong and as he is getting older it is getting harder for his mom to cope. This mother’s strength in such trying circumstances really touched my heart. And it also made me realise how much I truly have to be thankful for. Gratitude really does bring me back to earth again, and plants my feet firmly on the ground.

Yet, although I have accepted many things about Matt’s syndrome, I am still not ready to accept the thought that he might not speak. I still pray that he will. But I won’t let it dominate my life, and I won’t let it rob me from fully enjoying every communication moment with him.

But I will still hope…

Here Matt is signing KISS -he is facing away from Lloyd;

but making the sign in the mirror so Lloyd can see.

Then he turns and does exactly what he signed.

A precious kiss for his dad.

Hair

Last week I cut Matt's hair. It didn't turn out that well - clearly I need some lessons in hairdressing. That night we were playing around with some of my hats, maybe they will come into handy...

The last two photos are of Matt in his own hat - just in case you were wondering!

We must never be pre-occupied with the future.

There is no reason to be so.

Mother Theresa

Blossoms

I recently updated my facebook status by saying that “it’s like spring in Matt’s life as he is blossoming all over the place”. One of the main areas of blossoming has been his communication. A precious consequence of this is that Matt and I are growing closer as we better understand each other. Matt is constantly demonstrating that he understands way more than one might think. If I ask him to find a favourite toy he will seek it out and bring it back to me. Sometimes when I am speaking to others he might pick up on a word that I am saying and sign it back to me.

He uses both PECS and Signing to communicate. He usually uses signing to express a need for food or drink or some action that he requires, like jump or spin. He is also uses signs to name farm animals. He uses PECS to request items that he desires. Most of his toys are stored in plastic boxes with pictures of them on the boxes. He removes the picture of the toy that he wants and brings it to me when he wants to play with it.

We also have a place in the kitchen where pictures of various food items are on display. Like most kids he is only really interested in the chips and biscuit pictures.

It’s been brilliant to see Matt express his likes and dislikes – for example his passion for seeing his mom and dad show affection. Whenever Lloyd comes home, Matt comes running to me and shows me the sign for “kiss” over and over until I ask him who I must kiss - he replies by signing "dad". When I kiss Lloyd, Matt visibly melts with delight. Only then will he give his dad a kiss.

I am thrilled that we have these two methods of communication. I often imagine what Matt’s world would be like if he didn’t have these two avenues of expressing himself.

There are some limitations though. Matt’s vocab is limited to what I can teach him, and I only know so many signs. Unlike other kids who hear everyone talking all the time, and can pick up any word that might seem interesting to them – Matt can only learn signs that I teach him. He might want to tell me about the singing octopus toy that we have; or point out to me the bright green frog at the aquarium but he doesn’t have the signs for those. I have noticed how kids often come up with the cutest or weirdest thoughts on matters that you did not expect them to have an opinion. Matt can only comment on the things for which we have given him the signs. It saddens me to think that he might like the rainbow that Barney sings about, or be drawn to the stingray puzzle piece and I won’t know that. I love hearing my friends share about how their little one said “the funniest thing other day”, but I do feel bleak that Matt doesn’t have that full freedom of expression because I can’t give him signs for every word.

My ongoing prayer is that God will equip us to help Matt to one day be able to express himself without limits. I am not sure what that will look like. I know that full communication is not necessarily reliant on speech, but I do still pray that Matt will speak one day. In the mean time I am determined to equip myself and those around me with as many resources to help Matt communicate to the full.

Our Speech Therapist saw Matt this week and feels that he is ready to move onto the 4th Phase of PECS. He is now able to discriminate well between pictures, and is able to correctly choose the picture to express his preference. I am still to find out all about phase 4, but I think it entails storing all the pictures in a folder and using that as a base from which Matt can remove the photo of the item he requires. I have already developed such a folder for my own storage purposes, but now Matt gets to use it too. So watch this space.

This file contains pictures of the various foods that Matt eats.

This file contains the pictures of Matt's toys

Physio can happen in most places

...even whilst waiting at the airport

Right, now we ready to start again...