Everyone has a comfort zone, its where we feel safe and protected from things we don’t like or want to do. Its all to easy to get stuck in that comfort zone and hide behind the barriers that we put up ourselves to have what we think is a reason not to do something or a reason why we act a certain way. However lets face it quite often its an excuse and what we use to get out of something. We have all done it, we are all guilty of it, we’ve all said to ourselves we cant because it hurts, I don’t have enough time, money, its to cold, its to hot, I just ate, its to hard, I will tomorrow, whatever your reason is, was it true. Was it a real reason or was it just an excuse? I ask you this what is it that makes us hide in our comfort zone and not want to break out side of it. Isn’t time to be all you can be, don’t run, don’t hide, be loud, be proud stand up and tell them with no apologies that this is who I am and I can and will do this. Get out of that comfort zone, live your life and push those damn boundaries and if people or the boundaries push back then grit your teeth, dig your heals in, stand your bloody ground and fight. Fight the good fight for you and what you believe in. If you don’t then who is going to, for you, your future and humanity. Changing the world and making a difference starts with you. Stand up and get out of that comfort zone, this where things happen, nothing will change sitting and cruising along in the zone. It stops you from reaching for the stars, seeing the miracle and being spectacular.
For those who do and those who don’t know, my youngest Shane, 5 yrs old is Non Verbal Autistic with a moderate intellectual disability. Which in short means he can’t talk, we are lucky as he has 5 words under his belt, for him it is huge. Doesn’t mean he will or wont ever talk. So we use other forms of communication like Sign language and Pecs – Picture exchange communication system. However the next phase of communication for Shane is a Speech generated device. This was always on the cards but normally introduced to kids older than 5. As Shane was introduced to Pecs and Sign language early on it means he is ahead of where he should be to be able to use this type of device. Now to the device itself, we are currently in a 3 week trial phase from the company, set up through the speech therapist at his School, he attends Dandenong Valley SDS – Special Development School. A Private Speech therapist can also set these up for their clients. The key info is
- 3 week trial
- It is funded by the government
- Cost $7,000
- 9 month wait on funding
- It uses Lamp words for life (this is the set up we are trialing)
The basic run down of the device is pretty simple and fast to use, it has to be for the kids to be able to use them and function in normal society. Basically its pictures on a screen that you choose from, then press the little man picture and it brings up the word and says that word as well. In short yes this will talk for him and say the words that he can’t. This will become his voice, there are many forms of speech generated devices out there and think the best reference to this is what the great late Stephen Hawking used.
Raising kids on the spectrum is never planned, I can’t say it is ever wanted by me or any parent. Nobody wakes up one day and says I want to raise kids that have issues, mental, physical or otherwise. This was never the dream for me or the thousands of parents out there raising kids like this. We all had the perfect life dream, but In reality the the perfect life, 2.5 kids with white picket fence, the dog and happy ever after didn’t go according to plan.
So we switch dreams, grieve the life we won’t have and move forward. Into a world of pure chaos and total order. Each day changes and we hope like hell that its going to be a good day. Each day we get up with a 50 -50 shot that our dream of a good day becomes a reality. When it does we thank the universe for a day that we can cherish. When it doesn’t, we hold on tight for we know by the end of the day we just want everyone to make it out alive.
It may sound grim but you can never be fully prepared to be a parent of any kind. Spectrum kids have great highs and extreme lows that no matter how long you have been existing in this world it can take you by surprise and knock you on your arse. Wondering where did that new thing come from, sometimes you really don’t see the subtle changes coming.
But at the end of the day the plan changed, the mother I thought I wanted to be and the mother I am changed. You know what happens to plan don’t you………
NO I am not stomping my feet and having a tantrum. One has the right to say NO, in fact we all have the right. Every man, woman and child has the right to say NO. It doesn’t matter your sex, your race or age you have the power to say NO. To stand up and say NO when we see something we don’t like. To say NO to being touched, abused, yelled at, bullied, sworn at or made to do something we don’t want to do. It is the most powerful word we have in our vocabulary. NO one has the right to try and take that power away from you. When was the last time you stood up and said NO? NO this is not on, NO you can’t do that, NO I am not going to do that. Could you imagine a world where NO had been said but hasn’t been heard? Oh wait…… for many people we are in that world. The kid who said NO to being bullied, the family who said NO to the violent or abusive partner and parent, the person who said NO to being raped, the person who said NO you can’t treat people that way, the person who said NO you can’t treat me that way. You used your power word but it wasn’t heard, and you are left questioning why? So many times the word NO is used and not heard, okay granted it is misunderstood and has been used in the wrong context or for the wrong reason at times. Many adults don’t understand how to use the word, let alone adolescents and children. How? as one person do you fix this universal problem. It’s called education, teach your kids, yourself and yes your peers as well. Teach them how to say NO, when to say NO, why to say NO, what to say NO to. We need to teach them that they can say NO, but most importantly how to listen to the word NO. We may not like the word NO, we may not want to hear the word NO but at the end of the day it’s too bad, we actually need the word NO. It gives us boundaries, mental, emotional and yes physical ones. Sometimes there are boundaries that just cannot be crossed. We need to get back to the old saying NO means NO. It doesn’t mean maybe, it doesn’t mean this time but not the next, it doesn’t mean to ask again to get a person to change their mind. We need to listen and except the word NO. The word NO is vitally important in this volatile world, NO is a power word for a reason.
That time of day, time to pick the kids up. Although Shane finishes at 3 and Anthony at 3.15 I am here at 2.20pm and I have got the last car park near Shane’s school which is a hole block down from Anthony’s. It’s the only way to get a car park, to be here super early. Drop off in the mornings can be worse, I have spent some mornings circling the block for 1/2 hour just to take Shane school. Now I know I am not the only parent who has this problem. I have to question why the government doesn’t provide ample parking for parents and teachers alike. No wonder they say school mums are the worst, and call it mad mothers hour. Frankly after wasting so much time each day just for that pick up and drop off can you blame them.