Wednesday, August 5, 2009

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.


Nicole, Graeme, Janel and Nathan said...

Aaahh! That's so precious! What a sweet child.

Hang in there Jax. I have faith he will get there too. The fact that he's signing and shows such enthusiasm for communicating is a good indicator that he will talk in due course. It just may take a few years. Remember how long it took for him to smile, and then to start sitting up, and then to start walking? I have faith that his talking will be the same. In the meantime, it's fairly obvious to me that Matt is your son - he obviously has your passion for communicating!

Jessica mommy to Alex/ RTS said...

I think all of us RTS moms will always hold onto this same hope.

Kerri H said...

Ditto here with Jessica's comment..Speech is so hard for these guys! But I'm so greatful for the signs he does have! They always melt my heart! Great pictures!

Terri H-E said...

Honest and moving post. It is like being on a balance beam - fear on one side, hope on the other. Both are what keep us going, I think.

I do not mean to be a contrarian or a downer, but signing and a passion for communicating (being highly social) are not, in fact, indicators that functional verbal speech is underneath. It is a fact that there is a chance that Matt could be one of the RTS kids without verbal speech as a primary mode, as you state. But it is also a fact that he will communicate the best he can, make himself known, show love, accept love, have friends, make his own choices - it is a fact that his parents are ensuring he is exposed to all options, proving the power of communication and language of any kind at all turns.

Matt has the best chance there is out there for him. Your hope and his amazing will/determination are driving the bus where ever it's gonna go - maybe to words, maybe to sign, maybe to a speech device...or all 3, like my sweet-talker, social butterfly Addie.

All the very best to you, Jacqui, and to your clever little sonshine.

Kelly said...

I am hoping for the same thing and I have been thinking about if Max is going to be verbal a lot lately. . . must be the age. Love the picture of Matt signing Kiss. So sweet! Kelly F

Cindy said...

Matt is communicating and will continue to communicate with you...and the joy will be in realizing how much he understands of what you say, and how well he makes you understand him. And you making the effort to learn sign (since he has shown that he also appreciates sign) will go a long way to his communication, whatever form it takes. We Moms do what we have to do for our kids, and you are leading the way!

Pam said...

BUT Matthew does communicate quite phenomenally and in such detail AND he IS learning to speak! We have to learn to listen carefully to catch the details and nuances of what is happening as well as teaching and practising signs which alone are really quite limiting as they only focus on the nouns or one form of a verb. For example with music he was getting stuck with his hands in the air after he has made the sign (remember when he was sitting on your knee Jacqui at the door playing with the farm) and he would look at me as if to say "what next?" So we worked on the rhythm first through drumming and then through clapping (with me rapping about what we were doing like playing music or listening to the music or making music together or beating on drums or clapping our hands in order to feed him the vocabulary in preparation for expressive language)and his face lit up like a light bulb as we MOVED into "Music" and made music together and elaborated the concept with LOTS of variation and elaboration in FUNction which is so important, no, essential in fact if he is to create the language building blocks which WILL make the impossible possible and enable him to learn to speak and empower him to express his knowledge, understanding, thoughts and ideas in action and speech and on paper. Its so cool when he then applies what he has learnt and thereafter when he made the sign for music he would then move easily into banging or drumming and even COUNTING when we were hitting the whisper pipes on the ball and creating a sequence and he would follow with the same number (1 or 2 or 3)and degree of loudness and regularity of the beat and wait for me to have my turn/'say' to either lead or follow as appropriate!!(i.e. he already understands and practises with enjoyment the turn taking aspect of the pragmatics of communication). AND when he comes in the door I hear an unmistakable "'allo, 'allo" and there are many occasions now when he imitates or approximates a sound appropriately when we are playing with the farmhouse - he is trying to copy the animal sounds there - watch this space and I will try to record all the sounds he makes next time (and of course his pre-speech babbling is coming on fantastically) More late Matt's no. 1 fan Pam

Anonymous said...

Took a break to eat more than somewhat burnt macaroni cheese which spent extra time in the oven while I spent lotsa time thinking about all of Matthew's achievements and skills and how he is developing his ability to lead so we can learn to follow and enhance (through the way that he seizes and utilises each of the wonderful opportunities offered to him in turn.

In summary of all of the comments thus far, I would like to say Nicole is right: being 'slow' and needing more time are NOT synonymous and he certainly does have a passion for communicating esp. evidenced by his huge relaxed smile each time he realises that his message IS being understood. Jessica, Kelly and Kerri are right too: hold onto hope. This of course means that you have to believe that it will happen and just keep working towards making it happen and keep catching him (or her)doing things right and remembering that perfection and humanity are mutually exclusive BUT giving it a try (again and again as Matt does) is RIGHT as in the American expression 'right on'. In other words every minute improvement is actually a giant step forwards, as once something has happened, it can happen again and more easily and quickly with better results each time. Practice DOES NOT make perfect BUT we do get good at what we practice! Keep right on entertaining and teaching us all Matt, you're doing a GREAT job.

pam said...

Hi Matt - mistake, anonymous in this case is of course me, Pam. As always I look forward to seeing you soon!