Monday, 6 May 2013

One of those days...

My precious baby boy (shhh don't tell him I just said that) is a selective mute. What that means is that he only talks to our immediate family. He chats away to his hearts content, screams and shouts in the most impressive way, and can talk over the top of his brothers to gain control of a conversation...but only when it is just the family. As soon as he gets to school he refuses to utter a word. When friends ask him a question they will get nothing more than a smile. He has a dynamite smile by the way. There are people who have known him since he was a mere bump in my belly- but they have never heard him speak.

We have searched high and low for support for him. Selective Mutism is not a recognised disability (I can only hope that the introduction of the National Disability Insurance scheme changes that) which means that there is no funding or support agencies. At the moment we are working with a private agency- The Selective Mutism Clinic at St. Leonards. I found them after many, many hours of googling!! Crazy to think that after years of requests for support and direction it came down to google. It was not a referral from a GP, psychologist or paediatrician- all of whom we have seen in the meantime. Our former GP tried the aggressive approach by cornering him to get him to talk- FAIL!!! AND a new GP. The Paediatrician wanted to put him on anti- depressant meds with no evidence to support it! We had a wonderful psychologist who helped him address the social anxiety he has, but it just wasn't enough to get him talking. In frustration and desperation I decided one day that there HAD to be something else out there. You know how when you start to google it takes you along a yellow brick road and you wonder if you will ever, ever find Emerald City. Well I got there and I think I may have found 'The Wizard'. The Wizard of course equates to high expense, but so far we can see amazing growth. Heart, brains and courage are absolutely the essence of it all. Jonas and I are on this journey together and we are bringing the Munchkins along for the journey (that's you Eric, Campbell and Andrew).  I was terrified when I realised it was all in my hands to make it happen. I have also taken extended leave from work so that I can follow-up with the program at school. The pressure is on and I only have one term to make it happen. Can I have a new pair of shiny red shoes to help me on my way???

There have been great days, the joy I have felt by being just the Mummy is something I could never measure. Joe is fully aware that I am taking time off work just for him and he is bursting with happiness. As lovely as that is, I feel so terribly sad that I will be forced to go back to our very busy life soon enough, and that he won't feel like the centre of my universe any more.

However, today was one of those days were you just have to let it all go in that hysterical laugh at the end of the day.

During my leave I go to school with Jonas at least 3 days each week to work with his teacher (and sneakily fit in as many other visits as I can get away with) . For the first 3 weeks of my leave the teacher was off sick with shingles and we couldn't do what we needed to do. I went along with my own thing anyway and we coasted along nicely.
Today his teacher forgot (or got too busy) to come to our appointment. In addition, the $190 phone call between the teacher and the Selective Mutism Clinic (yes it really does cost us that much for a phone call) was cut short 30 minutes early because his teacher had to go back to her class sooner than anticipated. I got the bill via email for the full amount regardless. If anyone knows how hard it is to juggle a class without additional responsibilities it's me! I get it, but I was kind of smiling that fake smile of understanding at the time. This clinic is making the most amazing difference and we need them, but I am starting to think we will have to fashion clothing out of old blankets this winter ;)

To top it off we rushed about to get ready for swimming lessons after school, passing cozzies around the room, a flurry of jumpers and trackie dacks. A quick, early dinner before we set off into the Autumn air. It all appeared to come together, like it usually does. When Drew's class was over and Joe had to strip off for his I realised he was standing there in a pair of undies!!! I did that ppffttt thing and laughingly said "where are your cozzies?" Joe looked down in horror and declared that he must have forgotten to put them on under his trackies. I did that mad scurry within my head...no he can't swim in undies.... Hey boys quickly go and swap pants- Hurry!!... as if they would be willing...who could blame them. So off we went. Up to the shops so I could withdraw some money to pay for my Mother's Day present at school tomorrow!!!

It was just one of those days.

There's no place like home, there's no place like home, there's no place like home.....

Hey Toto- Kansas was over-rated!!! Baulkham Hills is the place to be these days. That's where you hear hysterical laughter coming out of houses all the time ;)

I love you my Jojo x




4 comments:

  1. I just got a large box of Swiss chocolates delivered today - you need to come help me eat them while I tell you about our day today (with maniacal laughter of my own).

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    1. LOL. I wish I appreciated the magical healing qualities of chocolate more than I do- I am just not that into it. You can eat your chocolate and I will enjoy a glass of wine while we laugh!

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  2. Melissa, you are an amazing Mum and it sounds so overwhelming right now. I hope you find the support you need to mange the pressure and time constraints while you give Jonas everything he needs xxxc

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    1. Thank you Bron xxxx We are getting there and it is so very nice to have the time to get on with all and breathe at the same time. I am trying hard to enjoy the time while I have it. :)

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