Wednesday, April 13, 2016

Light It Up Blue!

So I don't know if you've heard, but apparently it's Autism Awareness Month......

I keep seeing people on facebook LIUB, and any time we're Lighting It Up Blue for something other than Duke or the Tarheels, I'm a happy happy woman!

So I've been thinking about the things that I wish people who don't live with autism understood about autism. And this is from a parent's (my) perspective which could obviously vary amongst other parents who live with autism. So take it seriously, take it with a grain of salt, or skip the writing to see the cute pics of Owen at the end..........Totally up to you!

 I know from experience and first-hand conversation that some of my friends were lost when we first learned of Owen's diagnosis. They didn't know what to do, or how to help, and we didn't know what to tell them. We were all in it together and we've learned a few things along the way. Chances are, with 1 out of 68 children being diagnosed with autism, you have a close friend or family member going through what we went through.

So here are a few things I wish people knew in no particular order:

1. Look up the word "spectrum." Learn it. Define it. Rewrite it in your own words until you understand it. Please please please try to understand that the autism spectrum is very LARGE or WIDE or however you want to describe it in your own words. My son is not Rain Man, nor is he exactly like your neighbor's child who flaps his hands, or your grandson who is nonverbal, or your friend's child who talks a mile a minute. He can speak, "looks normal" and he does have autism just as your neighbor's child has autism as well. Autism looks different in every. single. situation.

2. Not only does autism look different in each person on the spectrum, autism looks different every single day in my house. This winter, we lived for three months with constant screaming. Three months people. Three months screaming at school, three months screaming at home, three months screaming in public, three months screaming at night, three LONG months. Did I mention the screaming lasted for three months? ;)  It tested our marriage, our faith, our health, our everything. And then one day it ended. And right now we have a fairly happy, well adjusted kid. Tomorrow? I have no idea where we'll be. Literally. He can go from laughing with his siblings one minute to completely checked out and in his own world the next. We just roll with the punches the best we can and know that the tide can change at any moment.

3. Every parent reacts differently to the news that their child has autism. I have one friend who totally took it in stride, didn't skip a beat, and kept moving forward. That is okay! I have another friend who laid in bed for weeks and weeks and cried. That is also okay! I found myself somewhere in the middle of the two. And guess what? That is okay. Let parents feel what they need to feel. Believe me, we know it's "not a death sentence" and it is "just a label," but it is also the end to certain dreams you had for your child and your family and it is okay to grieve (or not to grieve) as you learn to cope. 

4. Don't listen to the media. Seriously, just don't, unless you know it is a CREDIBLE source. I could write pages upon pages about this. Vaccines did not cause autism. They are now able to see the difference on brain scans in infants BEFORE they have been vaccinated. Food and therapies and vitamins and oils and lotions, etc. won't "cure" autism. (There is no cure, and I personally have a hard time thinking of autism as a "disease." Different? Sure! But disease? Well, that's a different discussion for a different day.) What you see through diet and natural resources is PROGRESS and progress is amazing, but please don't tell parents that you know someone who ate sesame seeds for a year and was "cured" of autism. Because when you say these things to me, this is what I hear: "I can't believe you haven't tried this new age sesame seed and rabbit fur protein shake that is curing autism all over the world; you must not love your child." I don't think that's what you mean so I almost ALWAYS give you the benefit of the doubt. But please understand that diet and therapies and natural resources are a great great great great great way to help children on the spectrum make progress, but "progress" and "cure" mean two very different things.

5. Autism can look and act ugly sometimes. And there are many times that I have to ignore stares as my 7 year old does things that are very age inappropriate.  So just let me say this, 99.999999999999% of parents living with autism in their family are doing EVERYTHING in their POWER to help their child grow and thrive physically, emotionally, and socially. EVERYTHING. And the 0.00000000001% that aren't? Well? I don't know who they are, so I can't tell you why, but if I had to guess, it would be because they lack the resources and education to do everything in their power. If you feel like someone is not doing enough to help their child with autism, please invite yourself to stay with that person for a week (they may say no due to the stress that change in schedule will cost; see next paragraph) and watch what they do every single day. Seriously. You will never be the same and they will love love love the extra set of hands on deck.

6. This is a biggie: DON'T take things personally! I am blessed with wonderful friends and family who offer to help us a lot! However, I rarely accept. Not because I'm a martyr or don't need the help, but because sometimes help makes my life harder. It is a well known fact that kids with autism CRAVE a schedule. Owen is one who will hold his stuff together at all costs for school or babysitters or grandparents, but once we're back to  our "normal" schedule, he lets all the built up stress out. And it usually spills out at night in the form of screaming about his ankles all night long. (Yes, his ankles. Don't ask.) Just trust me that it is NOT fun for me or Todd. So therefore, we wager things out beforehand. How many residual "ankle nights" will this date, or trip, or outing, or family visit cost us? And is it worth it? Sometimes it is; sometimes it isn't. (Usually it depends on how tired we already are.) Please don't take it personally when we turn you down. I'm sure we have hurt feelings in the past and I can assure you, we didn't mean to. When we're in survival mode, unfortunately, your feelings are not at the forefront of our minds. And I really am sorry about that.

But that does bring me to my last point: what can you do?

If you know another parent who has a child with autism, especially if they're newly diagnosed and struggling with coping, here are some things you can do:

*Find out about their child's diet restrictions and drop off a meal.
*Find out when their child is in school or already has care lined up and take them out for coffee.
*Offer to drive their child to all of his or her therapy appointments one day so they can rest.
*Pray for them to have patience.
*Pray for their child to make eye contact.
*Pray for them to feel connected to their child.
*Send them funny memes. (This is one of my favorite things that my friend does!)
*Offer to do something fun and special with the other children in the
home who often get the short end of the stick.
*Don't judge them or think about how you would do things differently.
Or if you do judge, do it VERY quietly inside the privacy of your own head. ;)
*LOVE their child!
*LEARN their child!
(My friend's know if they ask Owen how his day was, they're not going to get much of an answer, but if they ask him how his dogs are doing? Get ready for an earful!)
*INTERACT with their child!

Nothing means more to me than watching my friends and family TRY with my child. It's not always easy, and he doesn't always respond, but man, when he does? You just became a lifelong friend in my book!

And last but not least, just love your friend through it. No parent has all the answers and we're all figuring it out as we go along. And this list of things that are important to me may not mean a hill of beans to another parent. And that's okay. If you don't know how to help, ASK. Just show up and keep showing up, even when it's hard.

I know I'm a bit biased, but these kids are truly amazing and funny and resilient despite their daily battles to "fit" in this world.

If you allow them into your world, they will light it up.