Beginning with her diagnosis almost sixteen years ago, we’ve put forth a Herculean effort to help her to do and be her best. We’re human though and autism is hard so we’ve made mistakes. I also know we’re in good company because I see many parents doing what we did, all with the most noble of causes – to help our child.
We’re older and wiser (although not proportionally by any means!) now and can reflect on things we know now that we wished we’d known then. With that in mind, here are ten things we’d do differently that are offered not as criticism but as food for thought.
1. We choose a therapy or intervention with the goal that it will make autism go away.
While this is perfectly understandable and we probably all start off with this aim, having this global goal can make it difficult to accurately appraise the gradual progress that our kids tend to make. It can also lead to big disappointment when the optimal results aren’t achieved. Instead, focus goals on specific aspects of your child’s autism, the things that are most challenging. For example, more specific goals might be improving receptive vocabulary in speech therapy or reducing tantrums in behavioral therapy, improving social skills in social skills group. Here’s a tip for thinking about‘smart’ goals from our blog producer, Jana:
SMART goals are:
Attainable (we never know for sure but be realistic)
Setting goals that meet these aspects will help keep you engaged and confident.
2. We think that “more is better” when it comes to therapies/interventions.
Again, I get it. We’re told that early intervention is important and fear a developmental window closing so we sign on for multiple therapies and interventions all at once. Doing this, however, can lead to a family being over-scheduled (your time/energy/money), too many expectations for a young child who by definition has developmental delays so learning takes time, and not being able to clearly know what is helping and what is not. Identifying your child’s challenges, prioritizing them, and thoughtfully introducing interventions will help you stay focused.
3. We don’t wait long enough to determine the efficacy of treatment.
Our kids have behavior that varies day-by-day, sometimes minute-by-minute. Often they aren’t able to communicate their internal state and what we try to teach today may not “show up” until later when they surprise us with a skill we didn’t know they had acquired. Learning isn’t always linear – our kids are known for not walking a straight line!
It’s easy to become discouraged when it feels as if something isn’t working the way we imagined. It’s also hard not to compare our child to others. I couldn’t help but wonder why something seemed to work so well for other kids but not mine. Ask your child’s team for help in determining a time frame and clear goals for deciding if something is or isn’t working. Keep in mind that they have experience with many children and have a broader perspective to draw upon.
4. We make decisions based on emotion rather than on evidence.
This applies in so many ways. I chose a few interventions not because there was scientific evidence that they were effective but because I read about success a child had with it. I didn’t want to have any regrets about not trying something that might have been “the answer”. This though, was because I made mistake number 1. Fear can drive us to make quick decisions. We want to “do something” to quell the anxiety we feel. Take a deep breath and remind yourself that there is no urgency.
5. We tend to draw causal conclusions rather than consider coincidence or association.
Oh to be able to precisely connect the dots when it comes to our kids. I can’t tell you how many dots I’ve tried to connect that weren’t connected! When she is upset and can’t tell us what she’s feeling, we do our best to sleuth it out, ruling out the usual suspects, but we still often end up scratching our heads not ever figuring out why. I have to refrain from drawing conclusions that “this caused that” when I don’t have evidence. When in doubt, ask your child’s providers for help in figuring things out. They are trained to be more objective (it’s not their child so it’s easier for them) and scientific about it than we are. It also helps to accept that we will never be able to figure out the answer to every single perplexing thing about our kids.
6. We think no one else can do things as well as we do so we don’t let others help.
The first part of that sentence is without a doubt true—you are the best mom/dad/guardian that your child has. Jana offered this scenario for us: Consider this: you are the star pitcher for a baseball team. You strike out every single batter. You eat, sleep, and dream baseball. You’re the best! No doubt about this. But for whatever reason your team doesn’t score any runs when they get up to bat. You can’t win without runs. See where I’m going with this . . . Yes, Miss Jana, we do! Being the only one who knows and can work with out child isn’t sustainable. It takes a team. Share the love and the load.
7. We suffer in silence.
Many of us are not comfortable admitting we need help or asking for help. We pride ourselves on being strong and independent. We think we can do this alone or that autism is hard and nothing can change that. If your child’s provider asks you (as mine used to do) “Are you suffering in silence?” say YES if you are and need help. That’s what they are there for. You can’t do this alone and while autism is hard, it doesn’t mean you have to suffer alone and not expect that something can be done.
8. We think no one understands.
With 1 in 68 kids diagnosed with autism, there are many people who understand. Fellow parents can be our best source of support so find a support group or say hello to another parent at your child’s school. In WA State, the Parent to Parent program matches parents based on child’s diagnosis and age. And while providers may not understand the way we do because they don’t live with autism, they do make valiant efforts to understand and help. Let them.
9. We think chronic challenges will be solved if we just find the right pill.
When other treatments alone don’t seem to be enough, parents often look to providers for medication options. While there are many in the realm of possibilities, it’s important to remind ourselves that there is no pill for autism in general and no pill that 100% of the time magically makes whatever we’re targeting completely go away when it comes to behavior. Behavioral health/medicine is not an exact science. If there is a discovery of the magic pill, I promise you it will be headline news, as parents around the globe will be rejoicing in unison. Until then, seek help and follow the guidance of a trusted medication provider who has the benefit of experience with many medications and many children.
10. We think that our own health and needs will wait until after our child is (fill in the blank) – older, better, out of the home.
Veteran parents have learned the hard way that this is not true. As we get older, neglected needs take a cumulative toll and it shows. I can’t stress enough the importance of tending to your own emotional and physical health. Go to the dentist regularly, get your annual check-up, see a counselor if you need help dealing with the daily stress that adds up quickly. As our kids get older, they get bigger, stronger and faster. We, on the other hand, tend not to!
In summary, I hope you have not made any of the same “mistakes” I have made. If like me, though, you’re a mere mortal, you likely have. There’s a steep learning curve with autism and we learn as we go along so we build on our success and as well as our mistakes.
Not to worry – I have faith that in the school of life, parents get graded on the curve.
Keep trying, keep learning, keep asking for help.