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.

Weekend Respite

The hubby and I stole a few days away in Sydney last weekend, by ourselves. No kids, no real commitments just both of us together. 2018 has been one hell of a ride so far and we both felt that we needed time to stop and recoup.

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Sometimes as a special needs parent you tend to forget to look after yourselves. I'm back at work full time this year, so I don't have that quiet time on a Wednesday that I used to get. The plus side is that I guess my career is taken more seriously because I am full time (but that is a blog post for another day). Hubby is part time and taking over the primary caring duties. The role reversal has been interesting, along with the assumptions and statements made to me about this arrangement for our family.

As Tori gets older, we can see that in a few years time she will be wanting to get more independent, making her own way to school and back. She can basically take care of herself at the moment, she knows all the university food group basics; scrambled eggs, 2 minute noodles and toasted cheese sandwiches. She helps with the cooking and cleaning and is happy to bring the washing in when asked.

As she gets older, the irony is that Nicholas is getting harder to manage. He is still not toilet trained at seven years of age; despite working on it for the last 4 years.  Still non-verbal, he can point to wanting a drink or something to eat, but there is not much "conversation" beyond that.  He will "pinch" us when he is not getting his own way and he has started to show signs of frustration, but it is hard to reason with a 25 kg non-verbal seven year old. He is slowly developing, but it is a at a glacial pace. He still needs constant 24/7 supervision and a highly structured environment. In another life I would have two kids who would be learning their way to independence. But alas, that was not the card that was dealt to me.

And then there is the NDIS happening, which will probably happen at the same time as the NBN and cause us a whole world of pain.

In the mean time, we will try and grab respite whenever we can, be it 2 hours on a Saturday or a weekend away (which happens very very rarely). 

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.

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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].

My #phelanmcdermid boy

Isn't he gorgeous?

My boy who will never grow up.

My boy who will never want for much more than the basics.

My boy who will never talk.

My boy who cracks up over Dinosaur Train.

My boy who covets biscuits like he has never eaten.

My boy who delights in running around the backyard.

My boy who knows not what jealously is.

My boy who always wants kisses and hugs.

My Phelan-McDermid boy.

My Nicholas.

Reflecting on Rare Diseases 2016 #22q13

Another year has buzzed by and we are yet again reflecting on rare diseases and how we care for people with these disabilities in our community.

On this rare diseases day, we don't need pity or a campaign to raise money, we just want to be acknowledged and for our governments to acknowledge this changing healthcare landscape by properly funding science and research into rare diseases.

Up to 400,000 children in Australia have a rare disease (condition that affects less than 200,000).

My son Nicholas is one of 70 children in Australia with his condition and 1 of 1000 worldwide.

Nicholas has started school this year, at a Special Development School and he is blossoming. His learning needs are severe as he is still non-verbal and has difficulty communicating. But we are kicking some goals as he learns how to communicate his needs to us.

Phelan-McDermid Syndrome

If you are a common reader of the blog, you will have noticed some autism blogs appearing on my blog roll feed. If you have really been paying attention, you will have noticed some of them refer to Phelan-McDermid Syndrome. Our perceptive paediatrician ordered bloods for Nicholas to "rule out" any genetic abnormalities and hey presto, he had one (22q13.3).

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As you would imagine, there is a flurry of emotions running through my family at the moment. From anger to relief in knowing what is going on inside Nicholas' head.

So far I have been in touch with Megan Toole who runs the Australian arm of the Phelan-McDermid Syndrome Foundation. As there are only 50 registered families in Australia, the research on this syndrome just isn't there.

From a teacher's point of view, I've been doing lots of research on PMS and ASD. As a family it means that the next few years will be more of an adventure than we thought! Nicholas will need more intervention than he is getting at the moment and he will probably be a high-needs child for quite a number of years.

I am fortunate that I do have a wonderful supportive family around me and some wonderful friends who recognise the need for hugs.

So not much craft for me at the moment, my creative juices will be put into working out strategies for helping my wee man.