Our children are our lives. It's understandable. When confronted with a diagnosis that takes your child and your family down a more difficult path, parents want to do what they can to help their child become the very best (insert your child's name here) that they can be. We want life to be easier for our children. We want the best for them.
In fact, society tends to champion this full-intensity devotion to our special needs children. The mom who sacrifices of herself - who sacrifices herself entirely - for her special needs child is seen as noble, dedicated, and loving. All desirable traits, to be sure.
However, this kind of devotion is what leads to the burnout that we see so often in our fellow special needs parents. Don't worry - I'm not pointing my finger at you, by any means. I've been there, too. There was a time that I did Floortime with Jack with an intensity that would make the average parent pass out. I did it because I thought that leaving him to his own devices - even for a moment - would be to the detriment of my autistic son.
The reality was that I was wrong. Did that intensity of Floortime, did sacrificing my sanity, did losing myself make my son not autistic? No, but that was a lesson that I - along with every other autism parent - had to learn for myself. Two years since my child's autism diagnosis, he has not had the radical "this child might not qualify for an autism diagnosis now" turnaround that some kids experience. Two years of intensive therapy later, and my son is still very much autistic. Maybe even more noticeably so.
At this point in my life, I've learned that life cannot stop because of autism. Autism and life must co-exist. My son is not helped by me thinking that I cannot live my life. My son is not helped by my self-sacrifice.
So, here is what I've learned: if it feels like drudgery, if it feels like a sacrifice, then I've probably gone too far. If I dread doing something day in and day out, then it probably is.
I've learned to have a life of my own. It's nothing Earth-shattering, by any means. Just little things I do to bring joy into my life:
I love loose leaf tea. It's definitely more expensive than Lipton, but I splurge. That little indulgence soothes my soul in the midst of a rough day.
I actually do my nails. I am far too cheap to go to the salon, but I enjoy a pretty nail polish. Doing something to make me feel pretty helps me feel human.
I run. I find that running is an hour out of my day in which the focus is on me. I plan out what I will write and ideas flood my mind. I take in the air and become aware of my senses. I feel free.
I write. While my identity as a writer is that of an autism mom - as Jack's mom - the words are my own. Releasing them is something I do for me.
I eat good food. I'm not one to diet, really. Instead, I eat foods that make me feel good. I find that eating can be one of life's little pleasures (and I know some people would argue that idea is unhealthy...but I don't think it is).
This isn't a radical idea. In fact, I posted a couple of pieces last year on The Oxygen Mask Project - a website promoting that very idea of helping yourself so that you can help others. It should be something that we encourage day in and day out, not just for special needs parents, but for all parents.
Parenting isn't easy. Parenting a special needs child - a journey that seems like you were thrust in the midst of it without a road map - is even more challenging. Don't feel guilty. Don't feel like you are sacrificing your child for your happiness, when in fact your child will be better off for the time you spend working on you. So please, I implore you, spend time on your happiness so that you can radiate that happiness out to others, including your children. Let your life be more than autism, because you can't care for your child unless you care for you.