Yesterday I had the pleasure of attending the Imagine More Conference here in Canberra. I only attended Day 2 with hopes of collecting ideas on how we can create an inclusive environment for Ayla, especially at her mainstream school.
There were some great sessions to listen to from learning about segregation to creating communities around our kids, inclusive education, modifying the school curriculum, the NDIS and advocacy. I have lots of ideas written down to come back to.
But the interesting thing is this .....I had an almost devastating lightbulb moment within the first 3 minutes of the morning welcome!! It set the tone for the rest of my day and at times left me feeling completely bereft and a little desperate to fix it.
Jan Kruger (of Imagine More) began discussing HOPE. In an instant, my stomach dropped, my heart sank (and hurt) and a lump formed in my throat as I suddenly realised ...."I've lost hope". Over the past 18 months I have been gradually losing hope for Ayla ....or perhaps losing hope for the plans and goals that I set for her.
It has been tough to realise that all of the ideas and plans that I had put in place when she was a wee one, just weren't happening and possibly wouldn't. We still have no clear communication method with her and I consequently have no idea of her cognitive capacity. I nearly cried ...several times. Ok, there were a few tears in the bathroom and again on the way home in the car.
All of this has led to me one conclusion. I can't plan anything, until I have yet another go at finding a reproducible way to communicate with Ayla. Once we have communication (on some level), then I can start to make new plans and goals ....bigger plans and goals.
And just a little update on Ayla:
She didn't have tonsillitis! LOL No, she had Hand, Foot and Mouth so badly that she had to be hospitalised because she couldn't eat or drink. She's been very irritable and crying most of the day for 2 weeks now (despite the HFM being gone) and she has conjunctivitis as well. It has been very challenging. The neurologist suggested that her current symptoms are consistent with viral meningitis (as a result of the HFM) and thinks that as well as fatigue, she is probably experiencing headaches and that it could last a few weeks yet. She has had a good day today but we will see what the weekend brings.
Ayla is currently up at the Canberra Hospital. The poor little kid has been sick for a week now. Not just a cold or flu. It's the end of the school year and we pushed her a little harder in the last couple of months with hydrotherapy on Friday afternoons, she had her ABR workshop in October and on returning, we have increased her therapy too. It was clearly not our brightest moment. She's so rundown and exhausted that she currently has tonsillitis, middle ear infection in both ears, conjunctivitis and a huge cold sore.
It has been really challenging with 2 different antibiotics plus prednisone and still no response. She hasn't eaten in a week. This morning we made the decision to take her back again and Steven contacted me to tell me that they had knocked her out with a painkiller and filled her full of more steroids. She still may be admitted. So many drugs in such a tiny little body. I have absolutely no idea how I'm going to clean up after all of that.
Although I know that Daddy is with her, it's hard being at home while she's in hospital, but Billie still needs her sleeps and a hospital is no place for the healthy. There's no point in having Billie bring something home as well. There's precious little sleep to be had as it is.
So I think that there will be at least another week off school and very little going on in Ayla's life for the rest of the year. Roll on January ....can't wait to spend a few weeks at Mum and Dad's place, hanging by the pool with the kids.
It has been such a long time since I wrote a new post. Almost a year. Every now and then somebody contacts me and let's me know that they have read my blog and been inspired and it's a reminder that I didn't just start this blog for myself but to help others too.
Every day a new precious baby is born with a disability which means that every day, another parent needing understanding and some practical ideas is created. These parents don't just need understanding, they need hope that although their wee one may never 'recover' from their disability, there is hope for their children to have a wonderful life. Sometimes I'm one of those parents all over again. And after a full weekend of an ABR workshop for my daughter's therapy, I'm reminded too that there are so many parents out there that haven't discovered the one therapy that truly works.
I'm not going to attempt to get you up to speed with absolutely everything that has happened over the past year....just a few little important things. The most important is that Ayla is now a big sister! Beautiful baby Billie was born on March 7 of this year, all 9 pound 12 ounces of her. She has been a beautiful and very special addition to our family. I know all babies are special but Billie really is very special in a very unique way and if you would like to know why, check out this old post.
Ayla is doing very well. We had lots of dramas with new seizure meds, loss of skills and then a slow regaining of skills and now she is back to her old self. I've also had to pull back for a little while I rethink my goals for Ayla. I want so much for her that sometimes I think I set her bar a little high and sometimes we all just get plain ol' frustrated with each other and it's time for a rethink.
We continue with Ayla's ABR, albeit at a reduced rate due to the newest family addition, but I'm ready to get stuck into it again. New exercises, new methods of doing them and then some good changes in her structure have me motivated again. Thanks to ABR (Advanced Biomechanical Rehabilitation)the structure of Ayla's body is very 'normal' and the more normal it becomes, the better able to use it.
We are hoping to head off to Singapore for a workshop next year and to catch up with the creator of ABR, Leonid Blyum. Leonid has such a crazy busy schedule of clinics and is constantly researching to ensure our kids have the best of him so he has only been to Australia once and that was over 5 years ago. We are looking forward to catching up with him and showing our Ayla and her achievements off.