Surviving Christmas

I'm rather glad that Christmas is over. It isn't so much the material build up that bothers me but the social expectations that are rammed down your throat by media and advertising. The visions of kids opening their presents, getting excited by meeting Santa.

Having a boy that has a disability makes the Christmas experience very different for us and not one that I am totally at ease with. For his sister, there are the usual gifts and revelry. But for Nicholas, it is just the same day as yesterday and so long as he has water, cookies and iPad he is happy with the world. It is hard to plan a "special Christmas" when there is no excitement in receiving a present; no curiosity, no engagement.

The upside is that there is no arguing over what to wear or what gifts to get. For Nicholas we got him practical gifts.

A cordless hair clipper.

It doesn't sound like much, but the trips to the hair dressers have gotten painful. He doesn't like the sound of the clippers or the sound of the salon. Screams, pinching and biting are normally part of the experience for us as we try and make the experience as painless as possible using iPads and cookies as a hook to get him to cal down. After reading an article on Finding Coopers Voice, we decided to bring the experience home. If we do it often enough he will get used to it. The first time we used the clippers we still had screaming, pinching and biting (broken skin). But at least it wasn't in front of a salon full of people wanting "me time" by getting their hair done.

Social Stories, I hear you yell out! Nicholas isn't cognitively strong, so social stories don't have the impact that you would hope for. Believe me we have tried many strategies; we know our son and how he reacts to things.

So I am glad that Christmas is over and done with and that we didn't over buy for Nicholas things that he wouldn't play with or destroy.

Noah Greenfeld

This is the first time I have come across Noah, I saw a link on the Epiphany ASD blog.  Linked to the blog is a 60 minutes story about Noah's story.

For me, it is the first time that I have heard a parent in a similar position to us talk so candidly about what it is like to be a parent of a special needs child. 

Most of the parents that I know are "card carrying" members of the Phelan McDermid army. Most have drunk the cool aid and have re-invented their lives to evolve around their special needs child.n The campaigns, t-shirts and positivity can sometimes be a bit too much for me, when I think about the impact that he has had on my hopes and dreams. Don't get me wrong, I love him to bits, but part of me died the day I found out about his condition.

Reading about Noah and hearing his brother talk about him has given me another opportunity to talk about what we are going through with Nicholas. Josh Greenfeld was a successful writer and he talks about the impact of Noah on his life, his career and his family. I was very sad to read that he recently passed away, but I was glad that he took the time to share his story with us all.

His brother Karl Tao Greenfeld is a successful author and wrote a book what what it is like to be a brother to a non-verbal autistic. "Boy Alone" outlines his journey and is the fourth book written about Noah. I often wonder about what is like for my daughter to have some of these similar experiences, to love a sibling that in effect won't return their affection in the same way. She is, in effect, an only child.

But don't worry because NDIS will be here to save the day

The NDIS is being rolled out in our area in September, 2018. The promise of a new land, a new landscape of disability funding is being touted. But until then, everything has come to a grinding halt. Any applications for equipment that we had in the works, such as Nicholas' stability suit, has stalled; paperwork 'lost' in the bureaucratic nightmare.

But don't worry because NDIS will be here to save the day.

[source]

My anxiety is building slowly for the NDIS rollout. Trying to stay positive is a hard act as I read articles about fellow Phelan-McDermid suffers like Jonathan Gladstone who has had his funding cut by 25% on his second-round NDIS application, people such as Micheline Lee who have documented their struggles with the 'NDIS system' and the NDIA flip-flopping over their definition of what a disability entails. My anxiety levels are building.

I agree that we need to move to a more centralised method of funding. The funding landscape at the moment is a patchwork of services. Equipment funding through SWEP, individual respite through a variety of other providers such as Alfred Health Services and Windamere and other one-off services through both state and federal departments.

The NDIS will, from a governments point of view, streamline the allocation of funds.  NDIS will theoretically give the power back to the family or person with the disability, but only if they can navigate the application and management process of the funding. Both my husband and I are university educated and we are finding the process complex and onerous; we feel for those families who might have English as a second language as they will automatically be disadvantaged by this process.

I guess this is where my anxiety kicks in. It might be because "us" as a family will have to manage my son's disability funding like a small business. Having separate banking accounts and strategies to manage funds in and out of his NDIS account. Perhaps it is the foreboding administrative pressure that we will endure that is kicking my anxiety into gear. Reflecting on how Centrelink has wrecked people's lives with false claims of debt, we worry about not "getting it right" and getting either short-changed or accused of misusing funds. At least with the current system, we know that once we get access to the equipment or service there is no question that it is needed.

So we are waiting and attending NDIS information sessions in a quest to find out as much as possible about the "system" so that we can get the most out of it.

References:

Barbour, L., Borys, S. and Branley, A. (2018). This is Jonathan, one of the thousands worse off under NDIS. [online] ABC News. Available at: http://www.abc.net.au/news/2018-05-01/third-of-ndis-participants-feel-no-better-off/9716282 [Accessed 6 May 2018].

Lee, M. (2017). The NDIS promised choice and control. [online] The Monthly. Available at: https://www.themonthly.com.au/issue/2017/august/1501509600/micheline-lee/art-dependency [Accessed 6 May 2018].