Sunday, 24 June 2018

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.

Wednesday, 13 June 2018

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.

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).