A glorious gift

In December last year, 4 days before Christmas, Matt received this a glorious gift..

Grommets

"A grommet is a small tube, which is inserted into the eardrum to allow air to pass into the middle ear. It prevents fluid building up again and causing a hearing loss."


(These aren't his but I pic that I downloaded courtesy of Dr Paulose)


And within days we noticed that his hearing had improved

And the real gift unfurled in the weeks that followed as we noticed that his speech was improving. No more funny sounds. No more peculiar pronounciations. No more struggling to form words.

For most of our winter (June - August) last year Matt struggled with one cold after another, one infection followed the next. Weeks of snottiness turned into months. And with that came ear infections. And once his health improved he just couldn't seem to shake those gluey ears - despite 3 months of steriod sprays. Surgery, no matter how simple, is not something I feel comfortable inflicting on my kids. But it had to be done. I didn't dare hope that would have such a profound effect on Matt's hearing or speech.

I remember wondering why Matt had reached a plateau with his speech. I ached for him as he struggled to create the sounds, even whilst he carefully studied my lips and mouth in order to try imitate me. Words and sounds that he could once say where now difficult for him. Other sounds became so mispronounced that it was hard for us to understand him. I wondered if this was just the way his syndrome influenced his speech development. I  sadly considered that this might be as good as it would get for Matt's verbal communication. One never knows with these syndromes. Little did I know that he was just hearing the world as if under water.

It has been a joyful 2 months listening to his beautiful, little voice explore sounds and words; slowly growing in confidence. What joy fills my heart as I hear him trying to sing along to his favourite songs! He can't seem to help himself, he repeats most of the things we say as though he is desperately trying to practice them and take ownership of the sounds. He is still insecure in his speaking, saving his words mainly for us at home and adults he knows will take time to listen. Unless prompted and supported he is not brave enought to speak to other children. I think he senses that children are too busy, moving on to the next before he gets it all out. One small step at a time. And we are certainly celebrating this step.

I don't put videos on this blog much, but I think this definitely calls for one. So watch this space.

Matt in concert

Matt's last play group day ended with a marvelous concert where the kids sang some of their favourite songs. Matt was in his element with all the music and movement.

It was heart-warming to see Matt totally absorbed in the songs, doing all the actions and loving every minute. You can see he understands the words and meaning of the songs. He really has come a long way when I think back to last years concert.

Singing the Barney song, and Matt looks at his mom as he signs the HUG FROM ME TO YOU! Precious!

Matt's favourite song was where he got to play his drum. And boy did he beat that drum! The song had different sections where different instruments are supposed to play..the shaker, the wood block and the drum. Matt couldn't contain himself to just play the drum when it was the drums turn, no he played his drum during all the parts.

I don't often post videos as they take so loooong to upload. But I had to share this with you... the first is precious because Matt spontaneously introduces the song. My video camera is not the most sophisticated so the sound isn't great, but you can hear him say "hello song",  then he goes on to say "hello, hello, hello say hello"...

I love this next clip because you catch a glimpse of Matt having a little grinning moment with one of his friends. And it is fun to watch him doing all the actions.

We are so proud of our no-longer-little Matt, he has really exceeded all our expectations this year. Also we are so grateful for the play school environment that has allowed him to flourish.

Matt's speech renders parents speechless

Matt is sitting in the bath tonight, playing with a big red toy boat.

He signs MAN
...follows this with a confident spoken SIT
...then a less confident ON (signs it too in case we didn't hear)
...a pause, then THE (whispers this because its a newly acquired spoken word)
...and ends with a triumphant and bold BOAT.

MAN SIT ON THE BOAT

A five word sentence!!!!!

Matt was super chuffed with himself and went on to repeat it once more. Lloyd and I speechless - not because we are surprised by our clever boy, rather the emotion of the moment was particularly overwhelming.

Teach reading to teach talking

One of the exciting things that we came across at the RTS Conference was from our short clinc session with a Dutch Speech Therapist who has worked with a number of different RTS kiddies. She has found that there are similarities between RTS and Down syndrome kiddies in terms of learning speech. And therefore techniques to support kids with Down syndrome have proved helpful to RTS kids.

Teaching reading to teach talking is probably the single most effective intervention for helping children with Down syndrome to overcome their learning difficulties. Quote Sue Buckley and Gillian Bird 

From what I understood is that the emphasis should be on helping Matt recognise the whole word, as opposed to first getting to know the letter sounds and then building those up to words. As he learns to recognise and read words, she reckons, his speech will benefit.

This ST recommended that we start a book with Matt where he participates in it's development. On each page we draw a picture that he has expressed interest in, and then write the word below it, as well as a sentence of 3 or 4 words. Basically this will be the level of his understanding, not his expressive language. As he helps create the book, the topics should inspire him and capture his attention. The benefit will come from repeated reading and seeing the words. 

I am still learning the mechanisms and process of how teaching reading supports kids in learning to talk. Here are some useful links on the topic:

http://www.down-syndrome.org/information/reading/overview/

http://www.down-syndrome.org/information/reading/early/

http://www.up-for-reading.org/down-syndrome/reading/

We got started right away, even though we were still on our trip. We talked to Matt about what he had seen during the day and created our little "book" out of a note pad. We have since put the pages into a file with some photos prints to add more fun to the story telling. Matt has really taken to it and we read this "book" whenever he wants. I hope to start on a 2nd book - focussing more on his day to day experiences.

 

Music to my ears

For many months now, except being able to say mama and dad, Matt has been saying the ends of words, for example "eep" for sheep and "ook" for book. But last week he uttered his first full word with a consonant in the beginning and a differnet consonant in the middle!!!! In the video you can see he is telling his brain what it needs to do to help his mouth make the all the sounds.

Since then Matt has been practicing this word over and over. I hear him saying it to himself when he is playing. A week later he is now getting more confident in puttiing the s in front of other words. He can now say see and sun. He struggles a bit with combinations but says sar for star, side for slide, sing for swing, and seep for sleep. I love hearing his melodic voice as he says his words - it is music to my ears.

Clever

I want to end the year off with a positive post. I have an inspiring memory of Matt from the year that I return to whenever I need to rejuvenate my spirit.

I think it was in November - we were watching the news and Matt saw some aeroplanes on the TV. He became excited, pointed, and signed aeroplane (while saying "ane, ane"). He then jumped up, rummaged through his toys, until he found his aeroplane puzzle. With great agitation he pointed to the aeroplane puzzle and then to the TV.

"Yes Matt there is an aeroplane on the TV and on your puzzle, you are really good at joining the dots, aren't you???" I said

Matt grinned at me, and gave me a look that communicated healthy confidence whilst also communicated a mom-you-should-know-me-better message. Then he signed the word clever whilst boldly declaring "vava".

What could I say, Matt is indeed clever.

Big brother Matt climbs up into his carseat and insists that I turn Nic's car seat at an angle so that Matt can look inside it. Matt smiles, then waves hello and says "ic" while doing the sign for Nic. This happens every time I fetch Matt from his school.

A mystery

Big brother Matt has a broken arm. And how did it happen? Well we are really not sure. Last week Thursday we noticed that Matt asked for help to get into the car seat - he can normally climbs up on his own. And that afternoon during play with rice and beans he was only using one hand whereas he usually loves rubbing and moving both his hands through the textures. However he did not appear to be in pain and certainly wasn't crying. Only on Friday morning when Lloyd pulled Matt up onto our bed did he start crying. Knowing that many RTSweeties have been reported to have unusually high pain thresholds we decided we had enough suspicious evidence to warrant an xray.

No doubt about it: a fractured left arm, just below the elbow. But as already mentioned we are not certain as to the cause - was it when Matt toppled off our bed; or when he ran and fell on the grass; or tripped on his toy in the lounge; or one of the many other times when his exhuberant playing caused him to bump into or fall off something? An unsolved mystery.

Lloyd took Matt to have his arm put in a cast - which I am told he endured with much grace and calmness. Initially Matt was not sure about wearing this cast. He can say the word OFF now, and initially would repeatedly show me his cast and request it be taken OFF. I think he understands that it is here to stay. He has since adjusted to having only one arm in use. He has figured out new ways to climb up on beds, chairs and stairs without assistance. He can still feed himself and open the cupboard to find his snacks. And can still find a way to spin plastic lids; play with his cars and turn the pages of a book. He is more independent than I thought he would be, and really only needs a hand to drink from a cup, take his clothes off and get up into the car seat.

The biggest impact the broken arm has had is on his ability to communicate. Matt tries to sign with one hand, but as many signs require the use of 2 hands. Often we are not sure what he is trying to say. But we are persevering. And we are also using some of the PECS pictures to help us where we get stuck.

For the next 4 weeks bath time will be a bit more tricky and sadly no swimming for Matt. But hopefully the time will pass quickly and by then the weather will be perfect for his first swim.

PS I'm also learning to do things with one hand. My reason is a little different - Nic likes to be included in what I am doing during most of the day. I have to admit that Matt has adapted far quicker and more proficiently than I have!!!

my squishy heart

My heart is a melted puddle of joy. The glorious reason behind my emotional mushiness is the fact that Matt has started saying "mama".

A month ago, on my birthday morning (after a lot of coaching from his dad) Matt uttered that precious word as a birthday greeting. Since then he hasn't repeated it much. Until two days ago when something "clicked" in his brain. Once he started he couldn't stop...it was hilarious. For about 2 hours he would come running up to me with great excitement, exclaiming "mama, mama, mamam, mamam, mama, mama, mama" It seemed like he was so thrilled he could say that word that we wanted to practice it as much as possible in case he forgot how to do it.

The last two days he has used it appropriately to describe me, get my attention and announce my entrance into a room.

Hence the squishy state of my heart.