For the record, I am 99% of the time optimistic when it comes to parenting a child with special needs, and don't get me wrong I am well aware of the fact that it could be so much worse then it is, I just find some days, like today, that I can't help but feel frustrated and alone as a parent...
Today I took Sophia to her first music class for toddlers at the Langley Music school, which I was really looking forward to for her sake, though I will admit, I didn't really expect the first class to go splendidly; I wasn't expecting what I found either. She cried, and would not let me put her down, or let go of me, and pretty much was not interested in anything, even the singing or music; I felt like we took several steps back. Okay it shouldn't have come as too much of a surprise as she usually takes time to adapt to new situations, but she has been getting so much better in new situations; that I was a little shocked at how badly it went.
As usual I found myself assessing the situation; the lighting was WAY to bright, the other children were incredibly loud and unpredictable to her, I would imagine as she had her eyes closed most of the time, and the sounds would have been startling...no wonder she was upset!
Sitting in the class I know other parents are judging me when the
teachers ask us to let the children explore things for themselves, but
then there I am guiding Sophia's hands, bringing toys to her, and the
teachers and parents, are glaring at me like, "just let her explore."
For the most part I don't care, I don't expect anyone to understand, I
don't need them too, all the questions, the relentless comments, I have,
for the most part come to ignore. It's just some days it's hard not to
let it affect me especially when it's one of those days with Sophia when
it seems I just can't do anything right...
I get that Sophia's vision changes from day to day, and that it can
often depend on a variety of influences; lighting, glare, whether or not
shes tired etc, and I can understand how frustrating that must be for
her when her vision is suddenly less then the day before, and she cant understand why. It's
just the unpredictability of it all that can really throw me, as I never
know what to expect from day to day. Some days I have a perfectly well
behaved, happy child, and other days I have a miserable child that just
cannot be calmed. It is definitely a challenge some days to remain
patient and optimistic. I feel like on those days, that I'm just not
getting it, that I just cannot relate to my baby, or understand what she
wants, and I'm not sure if other parents with visually impaired
children go through theses mood swings as well, or is this just her
personality?
After class as I waited to ask about the lighting, I couldn't help but
feel like I'm the only parent with concerns, always assessing the
situation, thinking about all these things that most parents would never
consider. When I ask if the lights can be dimmed next time to
accommodate her sensitivity to light, I'm not really shocked when the
response is less then welcoming, and yet again I feel alone and
frustrated.
By the time I came home from the class I was already feeling pretty discouraged, and surprisingly exhausted (maybe that has to do with being almost 8 months pregnant) but now she's clearly upset or overwhelmed, she throws her lunch across the room, total meltdown, doesn't want to play, doesn't want to sleep, doesn't want me to hold her...and I'm just trying to not break down into tears. Days like this are not as frequent as they used to be, and I am very aware of the improvements she's made, but I just feel alone today. I know I'm not the only Mom in the world who has days like this, but today I just feel like I am.
