I wrote this several weeks ago, and this week as my son Brody is turning 5, I’d like to share it with everyone. I wish I could have penned this letter to myself 5 years ago!
Live. Deal. Laugh, cry, hope and ride the rollercoaster of life. Pretty much like you did before.
Remember that your child is the same wonderful little person that they were before you received that diagnosis. Know that your child with autism is first and foremost YOUR CHILD, pure and simple. They aren’t mentally disabled, aren’t to be pitied and they certainly aren’t little Pinnochios waiting to be turned into a “a real boy!”
Work on problem behaviors and let ones that might look strange (but are otherwise harmless) go. If the sight of someone flapping their arms or shuffling their feet in excess is enough to ruin a stranger’s day that’s not your problem nor your child’s. We are raising a society of people with autism and those who don’t want to get used to that are going to have to deal with it eventually, so eff ‘em.
Don’t pull your hair out trying to find snake oil miracle cures or panic about dropping 80K on therapy because of that mystical “learning window” that supposedly ends at age 5. That’s bullshit. If there are teachers who are willing, patient and full of love, there is no such thing as a “learning window”. Be that teacher for your child always.
If your child is non-verbal, do everything that you can to help them find their voice and their words. In the meantime, learn to communicate without it. There are a million different ways. As you expect your child to try their best to learn, try YOUR best to learn what they are saying without the words.
Learn as much as you can but don’t let it consume you. Spending 24 hours a day reading autism books that are mostly a load of crap and overloading Google with blame game searches (“Maybe I drank too many Pepsi’s in my 4th month..”) is a waste of time that you could be spending with your kid(s).
Don’t allow yourself to be bullied just because your child has autism. Mama’s often know best, that’s what we do. Just because your child suddenly has a diagnosis or a label doesn’t mean that you have to take every suggestion thrown your way, be it from your pediatrician, best friend, mother or anyone else. Always be open to learning a better way but own your choices and make sure that they were YOURS to begin with. You’re not suddenly maligned to a life of taking shit from anyone either, be it for your child’s behaviors, your parenting techniques, your pregnancy, etc, etc. Familiarize yourself with the mantra “My child has autism, what’s your problem?”!!
Learn as you go. Take every day one step at a time. Take breaks frequently with your child (and by yourself!) just to laugh, read together, play together..just to be. Some days suck and nothing will get accomplished because life happens. Some days you’ll notice a child doing something and cry because you’re not sure if it’s something that your child will ever be able to do. As time goes on, you won’t be paying that much attention to that other child because you will have stopped to notice the amazing things that your own child is capable of, no matter the severity of their autism. As more time goes on, you’ll realize that given a choice, you would never have wanted your child any other way than the way they are at that moment, no matter how “imperfect” or “different” other people may deem that to be.
Never let anyone tell you that your child is broken and needs to be fixed. Same goes for you. Don’t kick your own ass 24/7. You weren’t a super-person before your child got diagnosed with autism and you don’t need to try to be one now. A loving parent is good enough.
You can probably take it from here. Oversimplified? Totally. A better guide to what to do than you’ll find at the bookstore? Yes, in my opinion. Refusing to freak out and panic doesn’t mean taking a lackadaisical approach. All it means is to do your best to teach but to also appreciate every hug and kiss and smile and word, whether that word is a real word or just a happy noise. Because life is too short to not appreciate your child for whatever and whoever they are at any given moment on any given day, autism and all.