Today’s blog, ‘A letter for my son’, is a bit of a departure from the usual blogs I write. I am conscious that many people struggle with the day-to-day happenings of having a family member with a disability and especially having other people involved in your goals. We have had some amazing people working with BJ but there have been times that I’ve struggled and felt misunderstood as a parent. I wish I had written to some of those that have worked with BJ throughout the years.
Dear Carer, Teacher, Support Worker,
I wanted to write to you because I feel there has been a misunderstanding. You see, as the mother of a son with a disability I want the best for him. This is often mistaken for being demanding and I am sure on occasion, difficult. If you have a son, daughter, parent or loved one, I imagine you want the best for them. It is what we all want for the people we love. We are protective and sensitive about the people we care for. It is what loving someone is all about.
It may seem I expect a lot of you but what you don’t know is how hard I am on myself. As a parent I never feel I am doing enough, I feel like I am always playing catch up. We have spent so much longer than usual helping our son gain the skills he now has. With each birthday I feel a pang of sadness. It passes quickly because he loves a party but there is that moment every year where I think about what he would be doing if there had been no disability to contend with.
Milestones have taken lots of work on his part and loads of determination from everyone involved in his life. He sat just before his second birthday, learned to bottom shuffle at three and spent his first five years doing intensive therapy when other children were simply playing. A week in his life before starting school consisted of speech therapy, physiotherapy, occupational therapy, daily eye patching, doctor’s appointments and more. I know that we are lucky. Not everyone has the progress that he has experienced and we celebrate every one of these achievements. We are grateful and live our life positively.
The things I ask you to do are usually to help him maintain the skills we have spent years helping him learn. These often give him independence or mobility, which ultimately will benefit everyone – even you, his carer. Being able to bare weight, take steps and shift his weight will make transfers easier for you and give him a sense of accomplishment. Using his communication book at meal times allows him the opportunity to learn he has choices and can give you information. Using his walking frame will build muscle, keep him healthy and maintain mobility. It gives him a break from sitting in the same position all day in a chair. I am sure you enjoy moving and changing position throughout the day.
As a parent I crave communication with my child, to know what he has done during the day but because he is non-verbal I am often dependent on you to share information to bridge the void. This is something I highly value. As humans so much of our relationship with partners, family and friends is dependent on communication. I just ask you to remember this and realise that the snippets about his day you provide are a window into his life when he isn’t with me.
I often agonise over whether to say something or to keep quiet. I hope that you remember the praise and compliments I give in between and don’t focus on the times I say I’d like things to be done differently. I am so appreciative of the many people who care for my son. Over the years so many of you have made his days happier, more fulfilling by being a part of his life and I thank you for your dedication. You have contributed to his gains and shown patience and kindness. You’ve made my day by sharing a new skill he has learnt, a funny story or a touching moment.
I want my son to be an active participant in this great big world, to feel valued, be well cared for and to continue to learn and grow. It isn’t about just filling his days or passing the time.
Everyone wants to be a contributing member of society and my son has a great desire to be in on everything going.
Thank you for all that you do and remember that I just want the best for my loved one.
A loving mother”
We all want the best for our kids. As a friend put it “at the end of the day it’s what every loving parent wants for their children and it certainly shouldn’t matter whether or not that child has special needs. This is what we should be striving for as a community, equality.”
I understand staff have time constraints, funding issues and other obstacles in their day which mean it is hard, despite their best efforts to meet parent’s requests at times. I just would have liked some staff to have stopped to think about the greater picture we were trying to achieve with our requests.
* For those unfamiliar with our story, BJ has cerebral palsy and is a happy, energetic teen. He likes to be on-the-go constantly and is extremely social. You can read more about our family here.
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