I feel that it is fair to say that this is further amplified when your child has not got the ability to communicate verbally.
Above everything else, my wish for her to communicate is the thing I grieve over most.
People ask me with great regularity if she will ever eat, sit, walk, and so on. All of those things I can cope with as long as she has choices in the world, and opinions heard.
I so desperately want to know exactly how her day was, what is paining her or upsetting her, or answer questions for her.
I am however, a very strong believer that most communication is nonverbal. From knowing my daughter how I do I can ensure you that she does an incredible job of making her feelings known.
She has a vast range of sounds to help me know how she is feeling. She will shriek and giggle wildly when a great song comes on, and she will grunt and shout angrily when the wrong song comes on.
I'm not sure if she knows no different, or if internally her brain is cursing her body for not doing what she wants it to do.
I know she gets frustrated and I know it must be really hard for her when she can't directly tell me something and I'm getting myself in a flap trying to decode her sounds and movements.
People who aren't familiar with her often misread her signals. It saddens me as I know how much she loves and craves for social interaction but must get confused when she is not being understood.
For example, if she feels insecure or anxious her dyskinetic movements will increase. Her legs will start to kick frantically and her arms will flail around uncontrollably.
A few people now have said "ooh are you dancing?" to her. I silently cringe when things like this are said and don't always know what to say.
I know that their comment is well intended and bears no malice whatsoever. I'm pleased that they are interacting with her and don't ever want to discourage people from that.
I fumble about trying to find the right thing to say, getting myself quite tight chested and breathless.
I then start to doubt myself, what if she is in fact dancing and it is me that is translating her movements incorrectly? I usually just say "ah yes, she likes to have a wriggle around" or "she never stops this one!” something light hearted.
I ask her if she wants to wave to the stranger... to which she either will or won't. We all smile, and parts ways. Another interaction well negotiated. Phew.
Long term our aim will be to use PECs symbols and eye gaze technology to help Amy interact with us.
This will take so much time, energy and effort, from all of us, but if successful will give Amy the platform she needs and deserves to give her her own voice.
She recently trialled an eye gaze and played a game where you look at the radio and it plays music. This will teach her to look at and interact with the screen and that she will get cause and effect.
I know that this will probably take a long time. It's a pretty abstract concept for her to look at a screen and realise that she is in fact in control of it... unlike when she watches youtube on TV and takes for granted that the work is being done for her.
I often worry that I am constantly bringing things to her and deciding on her behalf what she might want. It seems very unfair and one sided and I try to present different options each time.
This is the problem with being non mobile as well as nonverbal. If she could go to what she wants, or she could point, then this would be less frustrating for her.
So we need to be as inventive as we can and use technology as much as we can to try and open those gates for her and make sure the world around her is how she wants it to be.
I really think you can mourn something you never had.
I do wish she would incessantly ask me the same questions over and over "are we nearly there yet?" "When’s daddy home?" etc.
I wish that when I asked about her day she told me she did "nothing" but I try not to dwell too much on that as my energy is better spent working on realistic goals.
I was such a chatterbox as a child, and I still am now when with the right people. I bet my mum wanted to wear ear plugs most of the time. I wish I had that. I just wish it could be easier for her and for me.
I am so proud of how far she has come and how hard she works every day to make her voice heard.
I love that she never becomes passive and will passionately pursue getting what she wants regardless of whether it is by word or not. We are so lucky that technology is where it is at now.
The only obstacle I see in the future is perhaps funding, but I know we have enough support around us to overcome this and hopefully help others in a similar situation.
Eye gaze, PODD, PECs, switches, the list goes on and on. It has been a huge learning curve for me and one that has made me a better and more intuitive and patient person. I'm so grateful for that.
It fills me with so much joy when she shows that she has understood what I have said. I know now that she understands when we are going to the car, and also who we are going to see.
I was once told "if you're not absolutely sick of repeating yourself, you're not saying it enough", and it's so true. The more you put in the more you will hopefully get back.
Finding ways to keep learning fun when I know her energy levels aren't always high is also a challenge. I love how school work with her and how her family speak with her.
I'm cautiously optimistic that I will look back on this post in ten years’ time and think wow, I can't believe we ever worried about that stuff... look how far we have come.
I hope that our community will better understand disabilities and different ways of communicating and that we will all work together to make sure everyone’s needs are met, whether they ask verbally, or not.