At this point to be perfectly frank I feel exhausted the added bonus of dealing with two children with special needs seems to be overstretching me. I adjusted to the demands of my eldest learnt coping strategies only to learn that I need to go another round and learn something new again! I am still learning and adjusting to my eldest journey and now I feel so exhausted. The most exhausting part of being a parent to any special needs child is the endless phone calls, paperwork, waiting, calling, researching it all come down to a daunting word called advocacy.
The most challenging part of advocacy is because it is sooo emotional. A situation happens at school or elsewhere you are dealing with a lack of a awareness, ignorance or worse indifference. As a parent and especially as a Mum we hit the outrage, overreaction button first. There is real chance that we could react prematurely before we have understood the whole story. Recently I was fortunate to attend a short self advocacy session at my local my time group and I discovered the following keys to successful advocacy
know yourself - This is where every parent should start, when we come into a room full of people who we aren't sure are on our side, such as teachers, psychologists and other such professionals. It is easy to feel intimidated. So to be effective in advocating we first need to know ourselves, what are we good at, what aren't we good at (faking it sometimes isn't a great idea), what you know well. Think of your skills and write them down if you need to so that you know where your strengths lie.
build relationships with those who are working with your child when you are in conflict or you are working hard at advocating your child it is hard to make friends with those. I have observed others in the midst of their outrage at a situation essentially burn those bridges of those who could work with them; because of their passion. Building awareness is not about barging your way through life, but rather using appropriate situations to share your worldview with them. Sometimes acknowledging their hard work (such as a teacher) and sharing what you notice they are doing well will help them to be more openminded to your suggestions. Also it does help to go up the chain rather than jump a few levels, I believe it is respectful to allow the immediate person involved the opportunity to resolve the situation first.
look after yourself - Typical situation of a over worked mother, losing it over small things I use the term dino mum sometimes that is so me. Yelling over small things, having a cry. Looking after ourselves is the key to success. This includes eating well, sleeping well, exercising and spending time alone and with those who are special to us. Self care means that you know where your line is, so you can deal with the issue before it becomes a full scale meltdown. If you need it, taking it to that next level such as counselling, respite and time away such as a weekend break (I know it sounds hard to achieve).
know the system your biggest weakness is lack of knowledge, if you are not informed it is much easier for a situation to get out of hand or to be simply unproductive in getting to the desired solution. Sometimes those who we are trying to work with are not unwilling but do not know the system either which means they may know they can access the help. At this stage it is useful to contact a local advocate such as the IDAS or your peak organisation in relation to the diagnosis of your child. If it is related to education it is possible to contact local heads and inquire anonymously to find out how the system works also. Some school's also have policies that you can read and provide a point of reference to point back to.
get the pieces of paper when you are setting up your team this includes your specialists, your therapists and others that work with your child. Encouraging them to be a part of your advocacy journey sometimes makes the world of a difference. For some horrible reason unbeknownst to me sometimes the Mother's authority doesn't cut it or maybe we are so involved in the situation it is difficult for the other party to be openminded or to hear what we are saying. These people who are working with us have a lot of knowledge, passion, and advocacy power that can be so helpful. Also sometimes we need the right piece of paper to get things rolling for funding.
Essentially being a special needs parent can be compared to being a politician, lots of schmoozing, ad campaigns, and travelling too. Half of our job is done if we are able to build relationships with those who we need to advocate with/for or against. Sometimes this means just keeping our mouth shut when we want to say I told you so.. or I said this 6 months ago and you didn't think this was a good idea and so on. If the job gets done sometimes it is good to suck it up:) and just smile.
The most challenging part of advocacy is because it is sooo emotional. A situation happens at school or elsewhere you are dealing with a lack of a awareness, ignorance or worse indifference. As a parent and especially as a Mum we hit the outrage, overreaction button first. There is real chance that we could react prematurely before we have understood the whole story. Recently I was fortunate to attend a short self advocacy session at my local my time group and I discovered the following keys to successful advocacyknow yourself - This is where every parent should start, when we come into a room full of people who we aren't sure are on our side, such as teachers, psychologists and other such professionals. It is easy to feel intimidated. So to be effective in advocating we first need to know ourselves, what are we good at, what aren't we good at (faking it sometimes isn't a great idea), what you know well. Think of your skills and write them down if you need to so that you know where your strengths lie.
build relationships with those who are working with your child when you are in conflict or you are working hard at advocating your child it is hard to make friends with those. I have observed others in the midst of their outrage at a situation essentially burn those bridges of those who could work with them; because of their passion. Building awareness is not about barging your way through life, but rather using appropriate situations to share your worldview with them. Sometimes acknowledging their hard work (such as a teacher) and sharing what you notice they are doing well will help them to be more openminded to your suggestions. Also it does help to go up the chain rather than jump a few levels, I believe it is respectful to allow the immediate person involved the opportunity to resolve the situation first.
look after yourself - Typical situation of a over worked mother, losing it over small things I use the term dino mum sometimes that is so me. Yelling over small things, having a cry. Looking after ourselves is the key to success. This includes eating well, sleeping well, exercising and spending time alone and with those who are special to us. Self care means that you know where your line is, so you can deal with the issue before it becomes a full scale meltdown. If you need it, taking it to that next level such as counselling, respite and time away such as a weekend break (I know it sounds hard to achieve).
know the system your biggest weakness is lack of knowledge, if you are not informed it is much easier for a situation to get out of hand or to be simply unproductive in getting to the desired solution. Sometimes those who we are trying to work with are not unwilling but do not know the system either which means they may know they can access the help. At this stage it is useful to contact a local advocate such as the IDAS or your peak organisation in relation to the diagnosis of your child. If it is related to education it is possible to contact local heads and inquire anonymously to find out how the system works also. Some school's also have policies that you can read and provide a point of reference to point back to.
get the pieces of paper when you are setting up your team this includes your specialists, your therapists and others that work with your child. Encouraging them to be a part of your advocacy journey sometimes makes the world of a difference. For some horrible reason unbeknownst to me sometimes the Mother's authority doesn't cut it or maybe we are so involved in the situation it is difficult for the other party to be openminded or to hear what we are saying. These people who are working with us have a lot of knowledge, passion, and advocacy power that can be so helpful. Also sometimes we need the right piece of paper to get things rolling for funding.
Essentially being a special needs parent can be compared to being a politician, lots of schmoozing, ad campaigns, and travelling too. Half of our job is done if we are able to build relationships with those who we need to advocate with/for or against. Sometimes this means just keeping our mouth shut when we want to say I told you so.. or I said this 6 months ago and you didn't think this was a good idea and so on. If the job gets done sometimes it is good to suck it up:) and just smile.
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