Wednesday, July 31, 2013

goals goals goals...



It's been such a long long journey in the beginning it was desperation, the knowledge that my dear child lived in fear, was not able to be free to be himself and free to speak. I thought it would be much shorter to resolve in hindsight, but now we are still on that journey though be it we have actually made it some way. It feels like long distance driving to be honest it feels like the journey is an eternity but when you look back you think it wasn't that long at all. The reason I am talking about goals is today it feels like we have reached a true milestone. 

Just recently we spent some intensive time in Perth doing some treatment for other issues not as related to Selective Mutism; the effects were much more deeper. It's not often that I regret living in a regional isolated town but those few weeks I believe I really felt it. I spoke to an OT and mentioned his diagnosis of Selective Mutism and I have to admit that I was utterly shocked that this OT actually knew of his condition. Within a few short days he was able to speak to the OT's in Perth who knows where it all changed. It felt really strange like the bubble had been broken and he was not in mute anymore. 

Honestly I feel isolated my children seem to find the most rare conditions and it is hard for others to truly understand the way it feels. Always thinking, feeling and planning for my child so that things can be just normal average and ok. I have felt like it's a glass wall I can scream all I want but no-one can hear me even worse they can't see me either. It's a nightmare that can be the reality of a parent with special needs. Then you meet someone and it feels like imagine your in those prison visiting areas and they can actually hear you understand you, they might not be on the same side of the glass but they are actually there. 

Thinking back I have lost count of how many hours I spent planning working things out and hoping that one days things will change. Today was a glimmer of hope to see the joy on the teachers face "he spoke to me, not directly at me, but he spoke in a loud voice and he spoke to the aide". Then this afternoon in his regular psychologist session after some warm up time, he then talked to the psychologist in his normal voice chatted to her like it was common and they did it all the time. We could not stop smiling, I even took a phone call so that he could be alone with her and he kept talking. I think it made our psychologist's day for sure!! She has been working with him from the start and sometimes the original people never get to hear the child's voice when they recover. 

This ended in the ultimate moment, I had to put on my normal happy Mother teaching voice and act like it was normal. We went out to dinner to give him a bit of a reward for being so brave at school. So at this dinner I told both of my boys how to order their dinner what I expected them to say, it was a leap of faith, I had no idea it would work. The time came we practiced a few times and then the moment came. He answered the waitress and gave his order she didn't hear him properly so he had to tell her twice even and then his drink choice and his topping choice. My husband I just sat there dumbfounded, it was such a surreal experience. Onwards and upwards I say, today was baby steps but WOW, what a difference. Do I regret putting him on medication not one bit. Today says it was worth every single worry and concern. 

So what is next besides getting him to generalise his speech to all situations so that Selective Mutism is not part of his diagnosis. This point is the next stage to imagine life with out selective mutism. Thinking about social skills, there is so much that is learnt by being around people all the time and learning the norms of social interaction. The issue with not being able to speak is that you don't learn this through osmosis and he is going to have to do a crash course. Going to be interesting that's for sure, it was quite funny one staff member when we discussed this said that's ok we can handle that! Some goals are harder to reach but the trick is to hang in there long enough till you reach those goals and need to make new ones. Today was a glimpse of the future. 


2 comments:

  1. I have just read your entire blog over the course of a couple of weeks, and this post was an awesome one to finish on! I am so happy to read about the amazing progress that your sons have made since you started writing. You're an amazing mother and you should be so proud of the level of effort and commitment you have put into giving your children the best of chances in life!

    ReplyDelete
  2. Thanks Mel for commenting and thanks for you feedback. Keep reading the journey is not yet over but we are getting there!

    ReplyDelete