Motherhood even with all its joys and heartwarming moments is basically hard work. Never in any job of my working career had I ever felt so stressed, exhausted, mentally and physically drained. Add to that the household management of the numerous loads of washing each day, house cleaning and tidying, garden maintenance, meal cooking, numerous food shopping trips, lunch making, car cleaning and taxi driving its a pretty busy life whether you work in a paying job or not. Special needs child or not.
I sometimes say Isla is a lot less work that my other two but what I actual mean is that she is a different kind of work. I don’t get the emotional drain that my other darling daughters have on me by their sibling arguing, sometimes whining and always wanting. Isla wouldn’t know how to be manipulative or spiteful even if she tried. That in itself is a breath of fresh air.
However with her it’s a little like having a toddler. I have to be constantly alert…she can’t be left alone in the bath, I cannot leave a boiling pan on the stove unsupervised and I have to always be on the lookout for not just seizures but also when she may need to do no2s to avoid an accident where cleanup is never pleasant at her age.
It’s dealing with the tantrums or trying to avoid them at all costs and trying to keep her feeling happy and secure.
But the worse thing I think is the guilt I feel that I’m not doing enough or not doing it right that is most emotionally draining for me when it comes to Isla.
Whether it’s her spending too much time on the computer or iPad. Using it as a babysitter when I’m busy or trying to relax. I feel bad as in that spare time I should be supervising and encouraging writing, drawing, reading or anything else that might make her development happen quicker.
Sleep deprivation is hard with Isla never hardly sleeping through the night and wondering if she has had enough sleep to not be hideous at school the next day and you’ve had enough just to be able to function the next day. So I allow the lying down with her to go to sleep, allowing her in our bed when she wakes in the night with the hope she’ll go straight back to sleep, having milkies to go to sleep that she should have grown out of at 2 years old and leaving the light on in the hall. I allow it but wonder whether I am creating bad habits.
Then there is the walking on egg shells especially around meal times when I don’t want her to think she can have her own way but also aware that she needs to sit down and eat a meal otherwise won’t sleep properly or will be hungry at school. So sometimes yes I allow the iPad just to get her to sit still and she is allowed mostly to eat with her fingers. You do what works but then I’m afraid we are not teaching proper life skills for independence. This also happens with her self care…she has the “get myself dressed chart” to follow but most mornings its too hard for both of us and I do it all for her as I don’t have the patience.
Guilt, worry and anxiety!
I wonder if other special needs parents carry a lot of guilt also about what we should be doing versus what’s the easiest thing to do.
I am sure all parents can relate to this even with neurotypical children as I also do it with my other girls…are they eating healthy enough? Are they eating too much sugar? Exercising enough? Doing enough homework? Are they doing the right type of after school activities as you’d hate them to not be given the opportunity at something they are good at? Are they doing too many after school activities? What’s the right school for them, private versus public, girls versus boys schools? The list goes on.
I am sure we all beat ourselves up and wonder if we are doing the right thing for our children. But I guess this is what makes us good parents !
Having Isla I am exposed to this guilt a little more often as I feel I am so responsible for her being the best she can be and I have so much more to teach her than my other children just to function in the world. I sometimes feel I am the worst person for this job as I have no patience and although I am very goal driven and proactive I am not overly consistent. However I’m doing my best which is all I can do.
This post originally was going to be about “Looking after Yourself”….what helped me/helps me in difficult times but will now save this for another blog as this has clearly taken on a new direction !!
Now to try to find a way to let go of the guilt and the anxiety and trust everything will be okay.