Rules are all around us. Some are self-imposed (Don’t pick your nose in public.) and others are heavily mandated, (Don’t drive over 55.) but we each make the decision as to how closely we are going to follow any particular set of rules.
There really aren’t any set in stone rules about autism and how to live with it, but there is a widely respected unspoken rule and that is simply to talk. Talk about autism. Sounds pretty easy, right? For the most part it is, but there are times when it isn’t – times like when your spectrum son is the butt of the joke, again; or when he’s having a hard time and other adults are beginning to stare; or when it’s just been a really long, loud, tiring autism day.
Sometimes, talking is absolutely necessary for the safety of the spectrum child; but sometimes, opportunities present themselves for a good conversation which will simply result in better understanding, and that will lead to greater acceptance. At the end of the day, isn’t that what we all want for our kids – for ourselves – simply to be accepted by our peers for who we are?
A few weeks ago, we had an unseasonably warm spell right smack in the middle of February. We’re talking t-shirts, no jackets, and for the bravest of brave, even shorts. My little people and I took advantage of this early spring and played on the playground after school every chance we got. One day, we were joined by other families enjoying the warm reprieve from winter.
Our little bit was running about playing tag with the other kids while Ben was just running around burning off some pent up energy from the day. I ran with him a bit, playing chase, laughing and giggling all the way. One of the other kids, who I’ll refer to as Z, invited Ben to play tag with them and my anxiety level skyrocketed, knowing that Ben doesn’t like to be touched, yet thankful for the invitation. He answered, “YES!” and again, I needed a deep breath to prepare for the spiral that would surely come with the first “Tag – You’re It!”
I was wrong. Z was so gentle with tagging Ben, it didn’t bother him a bit. Z even took the time to stop and show Ben how the game works, explaining that he needed to chase the other kids, touch one of them, say, “Tag – You’re It!” and then run away. The boys laughed and ran off playing together, and I began to breathe again – relieved, overjoyed by the kindness of Z, and disappointed in my own apprehension.
I watched the kids play for a few minutes until Ben was done. He came over to me and we decided to head to the swings. Much to my surprise, Z came as well. We chit-chatted a bit and out of the blue, Z asked, “How did Ben get autism anyway?”
And there it was, the start of an amazing conversation between two people who care about my son. Z wasn’t being nosy or asking dumb questions, as it seems people fear will be the assumption when they ask about autism. He was genuinely interested in learning more about someone to whom he wants to be a friend and wants to get to know better.
That conversation reinforced everything I’d ever read about this unwritten Rule #1 of Autism: Talk about Autism. The more we talk, the more people understand. It is only with understanding that acceptance can be found and true friendships can be formed.
There was a time we couldn’t go into a gym without headphones because the noise was too much. There was a time we wouldn’t step away from the group of children Ben was a part of because the prospect of being bumped into or touched brought with it the assurance of a meltdown. There was a time we didn’t dare to dream of team sports because smaller children, especially curious smaller children, frightened our boy. It shames me to admit it, but there was a time I didn’t believe. I didn’t hope because the possibility of meltdowns – loud tearful, heartbreaking meltdowns were more a promise than a possibility. I’ve always told our kids to never give up, to always have a couple of goals to work toward and to never stop dreaming, but if I’m honest with myself, the truth is that I have been guilty of all of those to some degree.
Thankfully, I have been proven wrong time and time and time again as our boy continues to blow our minds. A few years ago, he wanted to play baseball, so we signed him up for t-ball and set off on a new adventure. That first year was rough, as in I had to chase him around the bases and stand by him in the outfield. (Read: Hold him up in the outfield because the sun was too hot and it took too long – yes, I felt his pain. It was t-ball after all.) But he was out there playing baseball. Despite the setbacks, it was progress.
He wanted to play again the next year and the next and the next. He’s the tallest kid on the t-ball team, but he also smiles the biggest and stops at home plate after each run to take a bow and say, “Thank you!” to those cheering for him. It’s t-ball and it’s a safe place for him to grow.
About this time last year, we happened to be in the middles school one evening for a meeting regarding one of our middles and the upcoming baseball season. I thought the meeting was in the gym, so imagine my surprise when we walked in to find it also happened to be the night all the Mini Tornado basketball teams were practicing.
Our boy stopped dead in his tracks and I braced myself for the worst. The situation presented all the trademarks for a meltdown: loud noises, lots of small children running around, jackets and bags thrown on the floor – chaos to the nth degree. Much to my surprise there was no meltdown. There was no covering his ears and cowering next to me. There was no screaming, no crying, no opposition at all. What there was was just as amazing as what there was not.
He watched in silent awe, raised his hand, and pointed a finger towards all the activity before us and whispered, “I want to do that.”
Unsure I’d heard him correctly, I asked him what he’d said. This time he laid his hand on my arm, looked me in the eye, pointed back to the kids, and said, “Mommy, I want to do that.”
Time all but stood still in that moment of chaos in the gym, but I knew the task ahead of us would not be easily accomplished as once our boy gets an idea in mind, his resolve is solid in making it happen. Signups done, teams assigned and the season already underway, basketball was not happening in 2016.
I managed to distract him enough to get out of the gym and on to the meeting we were there to attend, but a new passion was brewing in our boy. Whenever we were outside last summer, he always ended up with a ball in hand – didn’t matter if we were in the pool, out back or in the house. If there was a ball around, he grabbed it and began to toss it around, most generally flanked by his ever faithful little sister sidekick. Very few balls went through the hoop last summer, especially early on, but he kept trying. By the end of the summer, he would usually make a basket at least once each time we were out. So when the opportunity came to sign up for basketball, I checked made sure he and his sister could play on the same team and paid the fee, hoping for the best.
The early spring we have enjoyed this month has allowed for more basketball than I ever would have thought possible in February. The cheering out back is getting louder and coming more frequently as the ball is going in the hoop more and more often, but I still wasn’t sure it would be enough to endure all the noise and chaos of actually being in a gym with multiple people, many of them smaller than him, and all the noise that involves. Headphones don’t really seem to be much of an option either as we want him to be able to hear the coach. And the coach? What if the coach isn’t familiar with autism? What if he or she is a yeller or a screamer, or one who physically redirects kids? How was this going to work? My anxiety level was rising beyond compare by the time their first practice came around.
I have learned many lessons over the years as a spectrum mom, but one of the most important to date has to be to learn to trust people, expect the best, and never say never. It would have been so easy for me to say no, the chaos would be too much and we don’t know the coach, so we better just sit it out, but how unfair would that have been to our son? You see, that first practice was nothing short of a miracle in my eyes as I got to stand on the sidelines of the gym and watch my boy shoot and score and celebrate with his coach and his team – HIS TEAM, of which I am no part. There was a time I wasn’t sure this would ever happen, but especially not at such a young age. I’m not one of his coaches this time, and I have never been happier in my life to not be needed.
Catching up and sharing from the files of my ramblings. This particular set is from January 31, 2017.
Living life on the autism spectrum presents several different challenges. One of which for many individuals is that of varying gastric woes. Our spectrum son has battled his share of these over the years, but fortunately, and thankfully so, this doesn’t seem to be much of an issue much any more as he continues to grow and develop.
However, there are times his gastric system revolts causing stomach upset and in the worst case scenario, vomiting to expel anything currently in his stomach. This typically only happens after he has either rushed through a meal or has simply eaten too much. Both of these situations are near completely cured once he has cleared his tummy. Completely – as in so much has come up that his stomach certainly must be empty, and completely in that he returns to smiling, laughing and playing as active as ever.
Such was the case at his sister’s basketball game earlier this week. We had joined his dad for dinner that night and he had eaten rather quickly, much faster than the rest of us. We tried to slow him down, but apparently, we had waited too long. It wasn’t far into the game that I heard his muffled, “I’m sorry, Mommy.” and turned to see the classic gastro-troubles-look: pale, glassy eyes, lips slightly parted and labored breathing. The first few times I saw this look, I was frightened as it seems he can’t get the oxygen he needs, but in time, I’ve become accustomed to this precursor and even thankful for the warning it provides.
Quick as ever he moved at my command and we made it to the trash can in time to overt any real crisis such as getting sick in front of or on anyone near us.
I didn’t think much of it as this has become somewhat routine when he eats too fast or too much. It’s one of those things that as a parent, you don’t necessarily like, you just come to accept it as part of the package. You deal with it and move on. And this is exactly what I did that night.
Catching up and sharing from the files of my ramblings. This particular set is from January 25, 2017.
We have long been fans of motivational quotes, stories, speakers, anything which gets our minds and hearts focused on what we want to accomplish. I think this may have started back in our FFA days, perhaps even earlier for me as I watched my older brother pursue his FFA dreams while I was in elementary and junior high.
Catching up and sharing from the files of my ramblings. This particular set is from January 25, 2017.
Inauguration day has come and gone and President Trump has begun naming his advisers. As with any changing of the helm, there are those who are excited about the future, and those who are less than pleased. I’ve even heard a few die-hard anti-Trumpsters proclaim, “I hope he fails!”
This is beyond the realm of comprehension for me. Why on Earth would any American actually hope our President fails? Why can’t people seem to understand that if he fails, we as a nation fail?
True, we have many issues as a nation: corrupt government, debt, poverty, homelessness, only to name a few, but how would any of that be solved by a President who fails?
I recently read another opinion on this matter, which supports my position: Wishing failure upon our President is the same as hoping the pilot of our flight will crash; we will all burn in the aftermath.
Can any American truly say they wish for the demise of our country as a whole? I certainly hope not. If that is the case, I would think a reality check in terms of where they call home is in order.
Regardless of whether we completely agree or support the choices of our President, the time is now to come together for the good our nation. Our future is riding on it. Our children’s future is riding on it.