Yes, yes I know there should just be ten but, what can I say, I learned more than expected on this autism journey. Can’t be helped. After fifteen-ish years on this journey with my son, the lessons have been plentiful and frequent.
- Rule books and benchmarks are overrated. Autism to me, today and looking back over a decade long journey, is simply a new way of looking at development and processing. It is an explicit way of raising and teaching kiddos. It absolutely keeps no schedule and cares nothing for socially acceptable norms. It essentially becomes a creative and trouble shooting way of parenting kids who are masterpieces and originals and unique in everything they do. It doesn’t mean they can’t or won’t hit milestones, it simply means they may take a different path to do the thing in question. The secret to autism is learning to see the journey with patience while looking at the big picture over the long run. Throwing out rule books and bench marks will become your best strategy and clean slates and empty canvases are the best gift you can offer your child. What I wish for each of you is that you throw out the fear and tears a lot sooner than I did and replace it with the kind of confidence that comes from knowing that autism is different but not less and certainly NOT impossible.
- Stuff will break. Get-over-it. If you want something to last, put it away. I used to hear others say, “Children need to get used to nice things. Teach them not to touch,” and that’s a whole big bag full of ridiculousness. If you want the nice and delicate piece of glass or ceramic or paper thing to survive, put them away.
- Rain will fall, milk will spill and it’s not life conspiring against you. Life happens to everyone. Get really good at cleaning up messes because that’s what kids are supposed to make. It’s their job… and anyone who convinced you that houses with kids living in them should be tidied up and clean smelling at all times lied to you. Let them be kids without all hell breaking loose inside of you every time plans change, glasses get knocked over or a disaster strikes. And make double sure you don’t round their little lives off to the nearest disaster. They are children. Let them be little and make sure you are the supportive calm in their lives.
- You are the expert. Yeah, I know you might be thinking, “Crazy, woman, how can I possibly be the expert? I don’t have a degree and I’m no doctor.” Well here’s the thing with autism….ready to hear this?….here goes….on this spectrum journey, every child on the spectrum is DIFFERENT. No doctor, no matter how well meaning or smart they are, can know everything about every kiddo and no person on this planet spends as much time with your kiddo or knows as much about your kiddo as you do. Don’t ever let one of the “experts” try to make you feel like you don’t know your child. YOU are the expert, degree or not. I’ll also go so far as to promise you that, after a few years, you will know more than the doctors about autism in general because it is something you will begin to live and breathe while it is something they only diagnose. I’d be curious to find out about med school and how many minutes, within their different “rotations” they spend learning about autism. I’m pretty sure, once upon a time, it was not even covered in med school but, today, as we move into a world where 1 in 54 or 68 (depending on which data you consult) children are on the spectrum, I hope it is better taught/studied. But my next thought is, “Who exactly is teaching med students about autism?” Professors? People who read a book about autism? People who have never lived, 24/7/365 with a child on the spectrum? Never doubt, my friends, that you are indeed the experts.
- Not being able to speak is not the same as having nothing to say. Tread very lightly here, my friends. This is the place where you need to be super duper careful because kiddos who aren’t currently speaking will scare the heck out of their parents years later when they start recounting everything you said and everything they did years ago when they were non-verbal. At fifteen, my boy can recall details from when he was two and non verbal. He apologized to me when he was thirteen for not listening to me when he was two. At two, he was standing on our front porch and I asked him to come with me. He ran off the porch and over to the garage. I asked him why he didn’t listen. He told me there was a marble toy in the garage he really wanted to play with. Eleven years after the fact, he remembers in vivid detail…despite his lack of language at the time. Yeah, that happens so be careful what you say and how you say it because our kiddos, despite their current verbal ability, understand and will remember e-v-e-r-y-t-h-i-n-g. I kid you not.
- Autism is not less and, in fact, it’s actually pretty brilliant if you open your eyes to it. Autism is just as beautiful as we let it be if we are fearless enough to let it be. He has brought radiance to our lives and I just don’t know who we would be without him but I’m certain we would be less. When I think of changing anything with autism or undoing it…I think, my goodness, there is so much I would lose, so much I wouldn’t know, so much I would be incapable of seeing and understanding. And then I realize…NO WAY…I would not change a thing. Different is indeed NOT less. Different can even be more and it can be brilliant if we let it be. I love autism because it has opened my eyes and blessed me with a more robust and understanding view of life. The compassion and understanding he has brought to me has helped me to see that different is indeed NOT less and …it is in fact a whole lot. I think this entire world would be better if every person could truly open their eyes to the sparkle that lives within autism or if we could spread not only the awareness but the love and understanding that autism ushers in when it whirls itself into your life. That’s why I love autism…for all of its beautiful imperfection, for all the ways it grows the adults into better people and allows the child to be the teacher of some awe inspiring lessons. Autism is audacious like that and the audacious truth about autism is that autism is brilliance, wrapped up in a mystery, just waiting to be unraveled if you are fearless enough to unlock the sparkle.
- There is no quitting in autism. I will not lie to you, you’re not going to find autism in your comfort zone. No, it won’t be all sunshine and roses. No, it won’t be easy.No, nothing in your past will prepare you for the colors autism will bring to your life. No, there aren’t a lot of clear cut answers in the early days. And yet, still I’m telling you, you’ve got this. Just don’t mire yourself in the muck of the ‘what comes next’ internal battle and be more than just the sum of your fears…be fearless, my friends. It will take time, no doubt, it will also take faith, determination and a back bone of stone but, I guarantee you, you’ve got this. Yes, it will be tough, days will be long and you will be pushed to your limits but you don’t get to quit. Nope, there is no quitting. Have a good cry, gather a great Facebook support group and move onward and upward. Focus on the work you can do today and don’t prematurely fret away tomorrow’s energy. PERIOD. The only thing you really need to do and actually have to do is to appreciate all that your kiddo is today and don’t get your focus stuck on that theoretical cookie cutter that they aren’t fitting into. And, if you do the work you need to do today, tomorrow will take care of itself. Just have faith in yourself.
- Animals make life better and the hair and slobber they may or may not bring into your clean home are worth every strand and puddle. What they give back to you in support, love and a fur coat to drown your tears into is priceless.
- Lead don’t whine.
We don’t follow or believe in the ones who always find what’s wrong so don’t be that person. See the bright side, find the positive and, by all means, dig deep to find it if you have to. What concerns me most is that if you go about your journey, seeing autism as a negative and not a blessing, you not only lessen the grace, value and blessing of the autistic individual but, while you are bundled up tight in your blanket of pity, deep inside that fog of woe-is-me, you might just miss the good stuff.I think we can agree…the sparkles don’t always announce themselves in neon. Sometimes they quietly tip toe in and hope someone is looking on the bright side. If you expect to see the worst, I’m pretty darn sure you’ll find it..BUT…if you look on the bright side you just might find the sparkles will surprise you. Which side are you looking on?
- Never assume. Don’t ever assume you know the answers or that you understand a person’s potential because every time we assume, we fail to learn. We shouldn’t assume we understand a child’s potential just because we know his current functioning levels. The only thing you should ever assume is competence. And the real danger in assuming you understand a child’s abilities is you will most likely underestimate all that they have the potential to be and, when you do that, we all lose. Period.
- “Cure” talk is crap. I don’t believe in curing autism. I don’t believe that a refrigerator mom, or a number on a scale, or the flu, or a food, or an aging parent are the causes for autism. I think there are a lot of different kinds of autism and I believe the causes are both genetic and environmental and as varied as the children who fill the spectrum. I don’t think there is a magic bullet or vaccine that will make it go away. I think healthy eating will do us all a lot of good but I don’t expect any diet will make his quirks fall away nor do I want them to. His quirks are home to me because I don’t believe he’s sick or wrong or broken.