Most parents of kids with special needs have heard the saying that “God doesn’t give you any more than you can handle.” This typically is said as an affirmation of one’s strength and ability to handle the challenge at hand. In the early days of autism, when I was first told this, my immediate thought was that God didn’t know me very well.
Parents of kids with autism also get used to hearing “You’re so strong. I don’t know how you do it.” And while this is always said with the best intention, when heard over and over, it can reinforce to parents that they always have to be strong. They can never be weak or let down their guard. That is just not sustainable though.
I don’t know a single parent who would say that autism is a walk in the park. On the contrary, most would agree that it is the hardest thing they’ve ever done. Here at Seattle Children’s Autism Center, we see that families handle difficulties very individually for many different reasons.
Some parents come to their child’s evaluation with an awareness of autism and that their child has it. Others are shocked by the news of the diagnosis. Some have never even heard the word autism before. There are parents who eagerly ask for help, surrendering to the complexity of figuring out our complicated children. Others prefer to tackle things on their own, perhaps not feeling comfortable seeking assistance. Some parents immediately tell other family members while others have reasons for not sharing the news with extended family.
At times, as providers, we become aware of situations where it seems adversity has no quota. Sadly, there are, at times, tragic outcomes – a parent who opts out, leaving the family behind, a parent who takes his own life, a parent who is suspected of abuse or neglect. Clearly they have more than they can handle.
Recent cases in the news of parents arrested and jailed for suspected abuse bring this to the forefront. Upon first reading the headline of a child with autism who was kept in a cage, I thought, “What kind of parents put their child in a cage?”
I caught myself, realizing it was a knee-jerk reaction to the sensational headline. Why is that we are so quick to pass judgment on total strangers? It seems we have gotten more critical of others as we increasingly are invited to share our opinions and thoughts quite publicly on social media. With the stroke of a key, we can like or unlike, friend or un-friend, give a thumbs up or thumbs down, vote someone on or off the island or the stage, and reply with the kindest or cruelest comment to just about anything posted anywhere. But that is a blog in itself.
After reading more about the family in the article, I saw things through a different lens. I opened my mind to the possibility that the parents may not have intentionally done wrong. Perhaps their son had gotten older and stronger and his behaviors more challenging. Maybe it wasn’t intentional abuse but for his safety or the safety of elderly family members or younger siblings. Perhaps with the kennel-type structure, they could keep an eye on him, make sure he was safe. Maybe the child felt secure there – our kids sometimes like to hunker down, burrow in small spaces.
The bottom line is that I don’t know all the facts and am in no position to judge. And judging doesn’t help the problem at all.
In tragic situations, parents are typically the first to be scrutinized and criticized for not getting their child help. A simplistic response such as “why didn’t they just get help?” is often offered up by those who have no idea about the high demand, lack of insurance treatment coverage and efficacy for the most challenging aspects of autism. There is no definitive treatment for all, nothing that makes the stubborn challenging behavior completely go away. At best we often get a reduction of extremes and management of crises.
Was this a family who fell through the proverbial cracks? What missing supports and services might have made this family’s life a little easier”? Clearly this was a family that had more than they could handle. If you are struggling with the challenges of autism, reach out and ask for help. Call a family member, a neighbor, your church, your doctor, or your child’s providers. In an emergent situation, call 911. Don’t suffer in silence. You’re not alone.
This is a beautiful reminder to be kind and seek to understand each other in our struggles. Thank you!
It’s a horrible, life changing experience to be in need of help, ask for it and not receive it. It can break people and sadly this happens every day.
Asking for help is great but there isn’t always help to be given.
I have a son with autism and I hear that one a lot. I wrote this recently. http://quirks-and-chaos.blogspot.com/2014/08/my-15-truths-of-parenting-special-kids.html
Why is the federal government giving each state millions in funding for these State Community Based Service Waivers, when time and time again, we have media reports showing families are going bonkers over trying to care for their autistic children? Obviously, the county and state agencies that are claiming they are providing services are failing miserably and someone needs to investigate the real reason why. WHERE is all the money going? We know it’s not going to the autistic people who need it the most, that’s for sure.
I have a son with severe autism. Instead of people trying to understand our situation in the school system, and try to offer what they can without telling us what to do. We get blamed for everything that they feel is a problem with our son. It is like people don’t have feelings anymore, and if it is hard for them. Imagine what we deal with on a daily basis. Nothing is more heartbreaking than watching your child suffer in their own body everyday of their life. It just seems like the public is shown the high functioning side of autism, but never the reality of what could happen to your child. This needs to stop, and people need to know the reality of severe autism before they can even make a judgement. Reading from a book doesn’t give you that reality. Living, and talking to actual people going through this does. Maybe people should think about turning off their t.v go out, and have a conversation with a parent of an autistic child before making a judgement. Until people know the truth nothing can be done. To some parents who have the most severe cases jail may seem like heaven than waking up while getting hit by your own child. I’m sorry, but that is the reality for some of us. It is not right what these kids, or anyone has to go through. When will these questions be asked. What made someone get to that breaking point? Why is nothing being done to prevent more kids becoming another piece to the puzzle? Awareness is not the answer more needs to be does need to be done.
I also want to say thanks for pointing these issues out in your article.
Thanks Jill, for the reply. We agree that awareness of autism is at an all time high yet the “real story” of what families live with is rarely portrayed. The media likes success stories and kids with long-standing significant behavioral challenges don’t fit into that box. Every day, parents face unimaginable hardship with little or no real support. It’s hard to understand how so many can be affected but so little done to help.
-Lynn