Wednesday, 22 March 2017

Why being an advocate is hard but also rewarding.

I have always been one to stand for what I believe in and back people when they need me too. Even if the situation will put me between a rock and a hard place and potentially make life uncomfortable, I can be counted on.


Having two young children who are both on the spectrum has meant that I have become their advocate and I feel as though I am constantly between that rock and the hard place. And let me tell you, this advocate business can be brutal and it is hard. Really hard.

As a parent it is our job to make the decisions that ensure our children's health, well being and best interests are looked after. Add being an advocate to that and the parenting gig becomes a whole lot more complicated.

There are advocate agencies that can do all the hard yards for you but at the end of the day, they get to go home. They get to switch off and relax. Their invested interest in you and your family is purely a financial interest and not necessarily a personal interest.

Being a parent as well as my little superheroes advocate means that I don't switch off, not fully anyway. I am thinking 24/7 about how I can best help my little superheroes. It is much more personal and much more intense.

As an advocate you have to learn the jargon and talk the talk. You have to learn the correct terms to use when speaking with funding bodies. You have to try and predict your child's future needs. And at times there is a very fine line between accommodating your child's needs and enabling their helplessness.

As an advocate you have to make some pretty intense decisions. Decisions that could impact on my little superheroes future. Which funding body do we apply too? What type of therapy is best going to assist my little superheroes? What therapy provider can provide the best therapy for my little superheroes? What school to attend? Support worker or no support worker? Which specialist do we ask for a referral to? And the list goes on.


As an advocate people can become peeved at you very quickly and on a regular basis. I have one particular person at the moment who I am fairly certain is avoiding me and my phone number! I am sure that every time she sees my number come up on her phone she starts thinking "goddammit, not her again, what does she want now?"

Being an advocate does make you unpopular with some, it can make situations uncomfortable as you are there to fight for your child. It can cause pleasant conversations to escalate at a spectacular rate. At times I do feel like I am a bother, that I'm the overbearing, overreacting parent when I need to approach an agency or the school again. As an advocate you have to take things up over and over again and you do have to make calls and send emails that no parent wants to make. You have to question decisions that other people make for your children and this in itself can cause friction.

Being an advocate is tiring, emotionally, mentally and physically. I am constantly doing research into different therapy and sensory aids, making phone calls, sending emails, constantly evaluating everything. It is exhausting and I have to constantly remind myself to take time out for me.

Being an advocate feels like you have to break down barriers on a much too regular basis. It honestly feels like a minefield and some days it feels as though we take one step forward and three steps backwards. There is always a hurdle to climb over or a hoop to jump through. And then when you finally think that you have got it right, boom, the goal posts shift and you have to start all over again.


BUT

Being an advocate is also a very rewarding experience.

You get to meet and make friends with some fairly awe inspiring people. People who don't think twice about helping others. People who invest a whole lot of time into helping us because they genuinely love our little superheroes. These people become part of your inner circle and you can count on them. Their invested interest becomes a more personal one.

Being an advocate means that in some cases we have been able to set a benchmark for funding and others will benefit. We've done the hard yards so that others don't have to. They can learn from our experience.

Being an advocate means that I am able to pass my knowledge onto others who ask for help. We have the opportunity to educate others and to raise awareness of autism. Yesterday I took O to a fabric shop to purchase some fabric to make her sensory body sock. When the shop assistant asked what we were making with the fluro pink spandex, O and I were able to introduce her to a new concept and the shop assistant now knows what a sensory body sock is, how it actually works and the benefits of it.

Being an advocate means that I have seen my little superheroes make the most amazing progress. L has come so far in such a short amount of time. And I love watching O maturing in how she handles different situations and how she is now wanting to help her friends who suffer from anxiety.

As an advocate I have become mentally stronger, tougher and more stubborn, if that is possible! I have learnt more about myself. I have learnt that I am capable of handling tough situations. I have learnt that no matter how low our journey can become, I will always dust myself off, get back up and keep going.

It would be easier and quicker to give in and I can see why people do just that. But then what sort of future would that leave for my little superheroes?


What sort of an example am I setting to my little superheroes by giving in?

I want my little superheroes to realise that it is okay to fight for what is right. O has already started doing that by standing up for her friends when they are being left out or excluded. I want my little superheroes to believe that they are capable of so much more. And that even when it is hard or scary or exhausting, that they are capable of going on.

Why do I continue being an advocate? Because that is my job as a parent. Every child deserves the best and every child needs an advocate until they find their own voice. It is my job as a parent to ensure that my little superheroes voices are heard.

Being an advocate is hard but I will keep being the advocate for my little superheroes for as long as they want and need me to. I wouldn't change anything for the world.

Being an advocate is hard but the rewards far outweigh the difficult moments.

6 comments:

  1. It is hard, but the rewards as you say outweigh big time. I am trying to get into being a more present voice in the mental illness world.

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  2. It is taking that first step that seems to be the hardest. Congratulations on wanting to be a more present voice, am sure that you will do well.

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  3. Wow,I really enjoyed reading your post. I love how you refer to your children as superheroes, and I cannot imagine how stressed you must be. Situations like yours are not for those who are weak. Keep up the good fight.

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  4. Great post. I can see the pros and cons to being an advocate and I think you bring them across in a relatable way.

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  5. Very insightful post. I'm a law graduate but haven't really done anything with it.

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  6. Loved the article. An article that really touched my heart. God Job!

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