Recently, a friend shared an article with me that was, to state mildly, critical of autism parents who blogged or shared pics or videos of their autistic kids. It said, they were opportunists, wanted to make money out of it, or were sympathy seekers. That summed it all up!!! While it was hurtful, I was not surprised. I blog and when I started my blog all I wanted to do was share my journey and writing was cathartic to me. It also helped me connect with other parents the way other social media platforms did not allow me to. I know of moms who share images of how their autistic child almost completely destroyed walls & furniture or scratched and bruised their mom or themselves, and also images of their child’s paintings, graduation, prom, or their first attempt at a word. They share it all, as a proud mom and as a mom who seeks support. No one has the right to judge them unless they walk in their shoes- it’s unfair, frivolous, and convoluted.
While most of us have been judged and told we are not good enough, at one point or another in our life, special needs parents, especially moms, happen to get that a lot. As long as they are not complaining, they are supermoms, but the moment they reveal their cracks or complain about all the challenges, they are sad fishing !!!
In my more than a decade of being a special needs mom, I have come across some amazing mothers who have gone above and beyond, left almost no stone unturned, and literally given up their own lives to ensure a better life for their children. Some succeed, some don’t. Not everyone who tries succeeds and not everyone who fails did not try hard enough. There are many factors at play and for an onlooker, oversimplifying it as just a measurement of effort or bad parenting is one of the biggest mistakes they can make. While they may make a comment and move on with their lives, it could possibly be the last straw that broke the horse’s back. For a mom who is struggling, trying to figure out how best to support her child, or going through a rough patch and probably reaching out for support, all it might need is one nod or a frown to change how they feel.
I wish it was just running across town for therapies but there is so much more to raising a child with autism. Autism is a spectrum and if I had a penny for how many times I have reminded this to people ( and even more surprisingly, to people within the autism community), I would be the richest person in the world. While some individuals may need little to almost no support, others might need constant supervision and support for every aspect of their life right from when they get up in the morning. While some may have amazing abilities, others might have severe cognitive and motor challenges, some might be excellent communicators while others might be suffering from language processing disorder and have no way to express their feelings. Some have extreme behavior challenges and some may be reserved and withdrawn. We are all raising an autistic individual with a different set of challenges and we are all doing our best within our capacity.
When they are not with their child, you won’t generally see an autism mom at a party, a theatre, or on vacation, you will find them at a doctor, therapist, support group, seminar, school meetings, or in front of their computer, looking for more resources. They are not doing this for an audience or an applaud, though an applaud would do no harm. They do this because they love their child and want their child to thrive.
Among all the conversations about autism and its challenges, what gets forgotten is the impact it can have on the family as a whole and the caregiver in particular. It’s sometimes hard to fathom that those who give support might need one too. The strong facade of a mom trying every single day to put every service in place and fighting every conceivable system out there to get her child all they rightfully deserve can sometimes give in to the need to be understood and seen. For the untrained eye, that may come across as attention-seeking when it actually could be a cry for help.
If you cannot say anything nice, do not belittle them for their effort or doubt their intention because you do not have the right to unless you are raising their child with them and walking in their shoes ( but refrain from judging even then). And for all you special needs moms out there, weed off the negativity from all the chatter that surrounds you and just keep the good. No one, absolutely no one knows your circumstances the way you do and how it affects you emotionally and physically. So don’t let anyone get into your head and tell you that you are not doing enough. Don’t let a random stranger tell you that your reaching out for support is an attempt to get sympathy. Just keep doing what you do best – make the world a little better for your child.
