Maybe I'm just accustomed to looking at the world through a lens of compassion and understanding. Perhaps my journey with autism has thickened my skin and toughened my once fragile heart. I have had to defend our family and our decisions too many times to count. Stay at home moms are already tired. Moms that stay home with their special needs child, even more so. There is a turning point in the lives of families that care for a child with autism. Will we continue to waste our precious energy trying to explain ourselves to people that we thought would have our backs or do we fall back, accept the pain, and forget about the nay sayers altogether?
It's a question I found myself asking recently when my husband delivered some disheartening news. This wasn't even anything to do with our family, but another family with a child that has autism. Honestly, I was surprised at the outcome of the situation in which he spoke. I couldn't believe that this special needs family seemed to still have people that are close to them questioning the genuineness of their intentions. The memories of my own past encounters broke my heart for them. Inquires that should have never been laid on the already burdened shoulders of a mother that is doing the best she can for her child. Phrases of "I would do it like this" or "He seems fine". I have even caught wind of full out discussions of how autistic a child really is based on a person's full five minutes within their presence. This is absurd. Really, please stop-because it hurts.
Once a family receives an autism diagnosis, they are as curious as others are about the spectrum and the prognosis of their precious child. There are a few things to take into account before assuming anything about the child or their family:
- Often, the mother's role morphs into that of a caregiver. If she choses to bring her child out somewhere, you can bet that she has fully weighed the pros and cons of the situation in which she is choosing to place herself and her autistic child. There is so much that she will have to consider before deciding to walk out her front door. These are decisions that she has never had to face before. She knows that her chances of being right are 50/50. These are less than generous odds when it comes to gaining confidence.
- If you have been around the child for an hour, don't assume you have that child summed up. These presumptions will lead your mind to entertain thoughts of what you would do differently if you had a child with autism. If you get the high privilege of being in the company of a child diagnosed with autism for a span of time, then you still have no idea about that child. If they appear that they are doing well and they aren't "that autistic" then hopefully you could take time to reach out to the exhausted mother/caregiver and tell her what a great job she is doing. Instead of getting your feelings hurt or judging the family for what they are not doing, why not take the high road and choose to love them anyway. They did not expect to have their lives turned upside down. Every single day they do not know how their child will respond to something they have done a hundred times. It's like a game of Russian Roulette and they don't have time to be burdened with feelings of failure.
- Autistic children look normal. We get it. We understand how hard it is to see a child that appears to be joyfully playing on the swing set and wonder what all the fuss is about. Many children with autism have several underlying diagnosis' that can make an innocent trip to the park feel like mom is preparing for World War Three. Sensory processing disorder, apraxia, OCD, ODD, ADD, ADHD can all affect how a child reacts to their environment and others around them. Not to mention the anxiety from which they suffer due to so many obstacles in their way. Don't let that smiling mother sitting on the park bench fool you. In her mind she is already planning ahead. She is watching her son to spot any clues of overstimulation which can lead to a meltdown. She has to closely keep an eye on her little boy to make sure he doesn't wander off because he has no sense of boundaries. Because he is a sensory seeker, he likes to throw rocks and hear them bang against the metal on the play set. She tries to get him to stop but because he doesn't understand the harm he is doing by risking hitting other children so he starts uncontrollably screaming. Did I mention that he is non verbal and cannot communicate to his mother that he really likes the way the rocks sound when they hit the metal pole?
Autism families may appear to be normal and that's because they are incredibly strong. They have been through the fire of an unexpected diagnosis, defending their child, and trying to find where they fit in. It is a constant uphill battle. Yes, awareness surrounding autism has greatly improved. However, it's one thing to know someone that has autism, but to really know someone with autism takes work. Every day they are in the trenches. Every day is an opportunity for you to reach out and offer help. If you want to reach autism families where they are at, it doesn't take much to let them know you care. They need all the support they can get. Will you be willing to step out of your comfort zone today to love on an autism family?
Our family has been blessed by friends and family along our autism journey. Many people in our lives have already made the choice to step in, reach out, and help. We thank God every day for those in our life that have helped ease the burden of raising a special needs child.