A perspective on the world of disability from a mother and an educator. Follow my blog!

Thursday, 31 July 2014

there is joy BECAUSE of the grey

So much of the year so far has been filled with blessings upon blessings. Our house and yard renovations are coming together nicely and we really feel that we have the family space we'd dreamed of. Work has been a mixture of challenges & achievements and is balanced nicely with family time. Our big girl's schooling has been extremely rewarding with her teacher helping her to reach higher than we once imagined.

So much of this year has been about finding the joy amongst the disability; Regaining some semblance of a 'typical' life. In the most I think we've done really well and our ways of thinking & being have matured to sit more comfortably in this journey with Down syndrome.

Why then, when the Graves comes back with a vengeance does life seem a little greyer? (Just a note that the Graves is hereditary & not due to the DS, but it does compound a lot of the difficulties we experience). In the back of my head is the little voice worrying about the emotional outbursts, the pre-tween spots, waking up at 3 or 4am everyday. That little voice just wishing it were easier.

Things ARE different for us, for her, for children with disabilities, for their families. Today at the shops I spoke to several parents who were keeping their children home for a day because they aren't coping with their disability (ASD, anxiety, intellectual impairment). Tired, emotional, having difficulty with cues - the story is a common one. Parents who aren't able to work because they're on call to their children. Children who put so much more effort into what they do just to achieve the same as 'typical' children. Yesterday I sat in the school car park talking to another mum about the struggles her child is experiencing. If I hadn't been blessed with Miss I and having Down syndrome as part of my life, I wouldn't have been any help to this mum. As it was I was able to empathise because I've been exactly where she is right now. It is because my big girl directed my career to Special Education that I was able to give this mum the information she needs to negotiate with the school administration to get funding to support her child.

In amidst all this grey, the joy found me. I can bring the joy to others BECAUSE of the grey.

This week I received a lovely note:

Hello lovely family, I feel tonight compelled to write you a message about an experience I had today. I have to admit that in my past I was nervous when in the company of people with a disability. Today, Miss E and I were at the pool swimming, and in with us jumped a young teeenage boy with an intellectual impairment. We chatted, he and Miss E played, and we had lots of relaxed laughs. It wasn't until later today I realised how much I had learnt and changed since I met Immy. I understood the boys' mother when she rushed up along side us in the pool (hobbled actually, as she was on crutches) and asked if he was okay playing with us. I understood when she discussed with me that they are trying to teach him the niceties of social interactions - like not being too rough, and asking if it's okay to join in, and trying to be aware that the person on the receiving end of the play was also having fun. I could see in her face the initial concern, and then subsequent delight that her child was just another kid in the pool having fun with a new friend. I also realised that I wasn't projecting onto my daughter any negative concepts about people with a disability - especially when later in our play she asked me "can we go back and play with that boy?". I owe that to Imogen, I owe that to you both and your lovely family. I hope that my words convey how grateful I am to know you all, and how much you have taught me - without me even realising it. xxx

I was in tears when I received this, and reading it again the tears are again flowing. I know that our struggles are not in vain. This silly little blog and my FB page are not for naught. My girl and I have made a difference, we have made a little part of the world a little less grey.




2 comments:

  1. Keep up the optimism! Aside from sharing a couple things in common, I wanted to point out a connection to Ajahn Brahm's, "Finding Happiness in Life." In his talk, Brahm relates pain and suffering to fertilizer and says to, "dig it into your garden." The fruits of your labor will be so much more abundant and sweet. Difficulties add beauty and enrich our life. Seems you already understand this. Awesome work mom!

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    1. Thank you so much Jennifer! I personally believe that without the bad we'd have nothing to compare the good to and wouldn't wouldn't know how sweet it really is. Love to hear your thoughts on future posts!

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