(Editor’s note: this is the letter I would write to myself if I were an old lady telling my younger self things would be okay, even after both boys were diagnosed with autism)
Hi hon. I want you to know, I see how exhausted you are. You just got your severely autistic five-year-old settled into your district’s kindergarten program, and what a long five years it’s been with him, even with all the progress he’s made. I know you thought you were home free with your youngest boy, the one who made all his milestones on time and has been babbling up a storm, the one who your pediatrician says is “fine” when you make your anxious inquiries. I know you went on a much-deserved vacation and came back to a sick toddler who’s stopped speaking, has a rash all over his body, and has lost the light in his eyes. I know you’re thinking that Justin showed signs of autism as early as six months, and this baby didn’t until this week. I know you know what the doctor is going to say when you take him in for that appt., the myriad phone calls you’re going to have to make, the Early Intervention program you’ll have to create for him. I know how much work this will be for you, once again.
I know you’re wondering how the hell both of your kids could have two different kinds of autism.
It must seem impossible to you, how you’re going to manage, how you could possibly create a life where you meet the needs of both your boys. After all, Justin is still potty-training (so much fun!), still “learning” how to sleep through the night, and still refusing to eat anything other than a carb on most occasions. There’s still his meltdowns to deal with, your need to create plans B, C, and D whenever you take him anywhere.
There’s still the enormous amount of time he needs you, and the depth of that need.
You comfort yourself with the fact that your oldest will be out of the house for seven hours a day so you can focus on your youngest’s needs, and believe me, that time will save you. Despite your exhaustion you will be able to manage the eleven different people traipsing through you house for the next fifteen months (you should have been a party planner, your attention to detail from being a teacher will come in handy). You will be grateful that at least this time you live in a state where there is actually an Early Intervention program that doesn’t expect you to do it all yourself (sorry Virginia), and these practitioners will truly help your child. You will spend more time with them than your own husband.
And a bonus; two of them will become good friends.
I know you are mourning quietly in your few moments of solitude, because that’s all the time you get. I know this experience with Zach is so different than what happened with Justin, because somehow around the time your oldest was learning to sit up you knew he was different, and sensed his difference would be challenging. I know this gave you time to ease into his diagnosis.
This time you went away and came home to a different child, one who seems to have most of the joy sucked out of him. You wonder if you’ll even see that spark again. You wonder if he’ll ever say “mama” again.
You wonder if he’ll ever be happy.
I want you to know that I see the strain, the way your husband believes your little one will “come back,” and how you just can’t allow your heart to embrace that idea because the alternative is too painful. I see how your heart will love them both no matter what, but how much you wanted at least one to live an independent life, and how that dream may now be shattered. I see you both mourning the now and the later, acknowledging that you will have to wait and see what happens. I see that is perhaps the most difficult part for you, planner that you are.
I see you desperately wish someone would just end your misery and tell you how it all turns out.
I can’t tell you the ending; I can’t even tell you the middle. But I can tell you that you will make it through those early years, the ones where your entire existence is therapy, chores and the anxiety that takes up permanent residence in the recesses of your brain and claims your sleep. I can tell you that your attention to detail, your refusal to cut corners, and the decisions you make regarding school placements, diets, and therapists will pay off.
I can tell you that your eldest child will one day not only sleep through the night almost every night, but will joyously welcome slumber.
I can tell you your eldest child who hated the car and going anywhere for more than thirty-two minutes will now revel in your excursions, and bring you his sneakers in a plea to go out.
I can tell you this same child now eats lettuce and broccoli with gusto (and yes, you wanted a medal).
I can tell you your youngest will not only speak in full sentences again, but will keep you running to google to answer the vast amount of questions your old brain no longer has the answers to.
I can tell you your youngest will have friends, will enjoy a wide array of activities both in and out of school.
I can tell you a few years from now you will have no doubts about his ability to lead an independent life, and to look out for his brother when you’re gone.
I can tell you both boys will regain their happy, joyous souls.
I can tell you that you will once again sleep (albeit it’s “old lady sleep”).
I can tell you your daily life will still have its struggles, but they are mostly outweighed by its joys. I can tell you your life will always be shades of gray, some mourning of what could have been, some acceptance, and always some celebration of what is and what will be.
I can tell you that you will have a happy family, the dream you held onto all those years you struggled to create one. It will look different than you expected. There will be challenges you could not have foreseen.
I can tell you your profound love for them both will make a difference.
I will tell you, a happy family it will be.
And for you, it will be okay.
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