How many parents do you know who think they have done a perfect job raising their children? None, right?!! That is because we are all human, we all make mistakes. And for whatever reason, when you have a child with a disability you feel like people are judging you more harshly, watching your every move so to speak. That can lead us parents into a tailspin of doubt that can be really hard to find you way out of. I have gathered together some strategies today that have worked well for myself and other families I know when dealing with the ups and downs of parenting a child on the autism spectrum. These strategies will ideally keep you, and your family, out the tailspin altogether and maybe even enjoying your time with one another!
1. Make "Me" Time.
That goes for everyone in the family. We hear a lot of experts talk about taking care of yourself in order to be the best parent you can be, but people forget that children need their "me" time too. They need time and space to just relax, explore, let their minds wander without grown-ups directing their every move. For me it means waking up at least 30 minutes before anyone else so I can slowly prepare my mind for the day. For my daughter it means spending time in her room, as soon as she gets home from school, and simply listening to music and looking out the window. It makes for much kinder interactions, and it is noticeable when we have to break from our routines.
2. Plan Thoughtfulness.
In the hustle and bustle of parenting it is easy to overlook all the helpful things our friends and family do for us on a regular basis. But everyone likes to be appreciated, so make a habit (or put it on your schedule) to send words of thanks to some of your support network each week. Let your children see you expressing your thanks and appreciation too, so that it becomes more natural for them to recognize kindnesses. And don't forget to thank children for their efforts as well!
3. Be Screen-Free.
No, not all the time! I'm not that naive! But I have heard from a lot of families who enforce (at minimum) a nightly cut-off time for any screens, which includes phones, t.v., computers, handheld games...everything, for everyone (YES, parents too!). Research suggests that we allow our minds to slow down and adjust for sleeping by dimming the lights, turning off electronics, and listening to classical music at least 30 minutes before going to sleep. Perfect setting for a good bedtime read, don't you think?!
4. Declare Home a Safe Zone.
By no means am I implying that disagreements aren't allowed at home. However, I am suggesting that an arrangement be made that discussions happen, listening happens, and feedback happens...all with the intent of creating more capable, caring, successful people. A lot of conversations in homes (especially between siblings!) can be downright mean-spirited. I like the idea of home being a safe haven, where we can express our feelings and opinions without the fear of being attacked, and that really cannot happen unless everyone in the home is working from a place of growth rather than defensiveness. When you have a family member with a disability there is often more frustration than in a typical home. Just listening to one another, instead of trying to stir up controversy or play the blame game, is a wonderful way to remind our family that they are valuable and important.
I cannot tell you how many times a deep belly laugh made the difference between a good or bad day in my life! From the outside we might look incredibly goofy, but get those happy endorphins flowing and I don't care how silly I look!
Overall, these sound easy enough, right? They aren't though. They take some work. New routines can take anywhere from 21 days to a year to become habits, so be patient with yourself and your family when starting something new. I have seen plenty of homes where many of these ideas are a way of life, and it is well worth the effort in my opinion. Your family is worth it. And the more kindness you share, starting at home, the more kindness that will come your way. I don't know how or why it works that way, it just does. So, like Ellen says, be kind to one another.
Who do you believe?
A common thread in the autism world is that there is no common thread. So whom do you believe? How do you know what new trend to follow or try with your child? I’m going to give a few pointers on ways to sift through all the research, news articles, Facebook posts, celebrity endorsements and e-newsletters so that you can feel more comfortable with the treatment your child receives.
First: Who is sharing the information?
Check to find out the original source of the information. Is it a peer-reviewed research article? Is it from a reliable medical foundation (think American Academy of Pediatrics or Mayo Clinic)? Is it from a non-scientific source, such as People magazine? Don't get me wrong, I’m not knocking People magazine. In fact I appreciate how publications such as this introduce new ideas to the public and spark conversation. There has been many times when I’ve seen an article in a doctors’ office waiting room that has made me curious enough to learn more about a topic. However, it is important to know who is writing and sharing the information so that you may make an educated decision on whether to incorporate the material into your family’s life.
Second: Why are they sharing the information?
If the source of the information is funded by an outside agency, know what might be in it for them for the public to be aware of the information. For example, if a big drug company funds a research study on the effects of medical interventions for certain behaviors related to autism, and the study finds their product to greatly improve behaviors, how reliable is the study really? Unfortunately there is a lot of research done this way, so be careful to find out where the funds to research or publish came from before implementing a change.
Third: What kind of investment is involved?
I’m not just talking financial, although that is a huge component. But we already lead very busy lives, so we need to think about the time investment that a new therapy or treatment plan might involve. How will it impact your family as a whole? Will the benefits outweigh the negative impact? We often function in survival mode day-to-day, but consider the long-term effects by asking yourself questions such as will a little extra time now create a huge amount of benefit (for everyone) in the long run? And the financial investment may not be an option for you either, since treatment is typically long and costly. Even with insurance a lot of families cannot take advantage of all the interventions they would like because of the cost of copays, or the fact that insurance does not cover all treatment options. So is this time effective and cost effective for your family?
Fourth: What does you gut tell you?
If you read something and it just feels wrong, then it probably isn’t the right treatment for your family. I’m not suggesting turning away every new idea, not by any means. But, after you have done sufficient research on a topic yourself, if you feel like the information is too out of touch with your lifestyle you probably shouldn’t try it. Just try to keep an open mind and learn about the new research and treatments coming your way…there was a time, less than 75 years ago in fact, when science said autism was caused by bad mothering (remember hearing about Refrigerator Moms anyone!). Thankfully we now know that is not the case! Let’s be grateful that there are scientists out there brave enough to keep looking for answers so that our children may lead happier, more comfortable lives.
Welcome to the Land of Sunshine! Today is International Autism Awareness Day, which I thought was as good a time as any to start sharing some thoughts on the topic.
My daughter has autism. She also has brown hair, blue eyes, a twisted sense of humor, an enormous overflow of empathy, and an incredible artist eye. She is a lesson in patience, a constant reminder of the impact of our words, and my endless source of joy. It took almost 18 years to get here, but it was worth every minute. How, you ask, did i turn a potentially devastating diagnosis into something so amazing? Sunshine. And lots of hard work. Don't get me wrong, I am far from perfect. But enough things went well in raising my daughter (and enough people held my hand along the way) that she has been able to take her gifts and soar.
I made a conscious decision early in my daughter's life to be positive. I decided I would gather as much information as I could get my hands on, talk to as many professionals as would take time to speak with me, and develop a network of kindness with which to surround her. In my blog I intend to share some of the wonderful resources that have made a difference in our family, as well as try to keep up with more current data and tricks of the trade. I hope to touch your heart, offer glimmers of hope, and loads of smiles.
Here's to my 1 in 68!
Colleen writes with the real-life experience of raising three children as a single mom, one of whom happens to have autism. With too much on her plate, humor is Colleen's survival technique, often to the horror of her children! Welcome to the Land of Sunshine!
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