The other day, I was giving a mom some advice. This mom is very new to the world of SPD, autism, IEPs and all the other abbreviations that come with special needs kids. She was understandably confused and scared, and more than anything, she needed reassurance.
As I wrote my friend a message, I realized that I happened to have quite a lot of reassurance to give. Somewhat amazed, I recognized that I feel so infinitely different now than I did 6 years ago when I was just entering the world of SPD, autism, and special needs. I found myself wishing someone had given me some of this advice before Danny was diagnosed. I thought, I wish I could go back in time 7 years. I would have a heart-to-heart with myself back when I was just learning about SPD. There is just so much I wish I could say to that younger version of me, that woman who was struggling so mightily to hold everything together.
So, here’s what I would say to my Pre-SPD/Autism Self:
Dear My 32-Year-Old Self,
I know things are really, really rough for you right now. You’re consumed with worry about Danny. You wonder if he’ll ever speak and if he’ll ever grow out of those horrible meltdowns. You wonder if you’ll ever get to the point where you can enjoy normal outings to places like the park and the pool or if you’ll always have to wrestle a screaming, flailing, frenzied toddler into the car when it’s time to leave.
You worry that someday someone will report you to DCFS because Danny freaks out so badly when you leave the library it definitely sounds as if you are hurting him. Or kidnapping him.
You wonder if you’ll ever have fun at a family function again.
I know you’re exhausted and so, so discouraged.
You blame yourself. Of course, you do–that’s so typical of you, but you’re wrong. It is NOT your fault that Danny isn’t talking yet. It is not your fault that he has Sensory Processing Disorder, and it’s definitely not your fault that he throws tantrums loud enough to wake the dead.
Things are tough now, Patty, but here are some things I would like you to remember. Things that will make life much easier for you, if you can just muster enough faith to believe that they are true.
1–It’s going to be ok. As unbelievable as that sounds, it really does get better. So, so much better that it will take your breath away when you realize how far Danny has come! You will be able to take him to places you never imagined possible, like crowded museums and birthday parties. Danny will amaze you everyday with the strides he is making.
This will not happen magically; it will take hundreds of hours of research, and patience and accommodations, tons of trial and error and many, many tears (yours and Danny’s), but know this: your hard work WILL pay off. You will see results.
2–That said, you need to remember that there is no cure for Sensory Processing Disorder (or autism, but let’s not get ahead of ourselves. You won’t get that diagnosis for some years to come, so forget I said anything). Don’t waste too much of your time trying to find a cure or a quick fix or wishing Danny were “normal.” Danny will most probably always have sensory issues, but he will learn how to regulate himself and how to deal with his emotions. He will overcome some of his challenges, while others, he will learn to live with (much like how you have learned to live with YOUR sensory issues).
3–Get on the same page with Bil. He’s a wonderful husband and father, but he’s not a mind reader. He’s just dying to help you and Danny, but he needs your guidance. After all, he’s at work all day long; he’s not around to see all that goes into a typical day with Danny. And try to remember that, hard as it is to admit, yours is not the only way to do things. Bil may have different parenting methods than you, but you need that other perspective. And so do your kids!
4–Trust your instincts. They really don’t lead you astray. No matter what everyone else tells you, you are the expert on your kids and your instincts are spot on. (Well, usually. That instinct you get to throttle your kids when you’re PMSing? Yeah, that’s so not appropriate.)
5–It’s okay to be sad, even furious that you have to deal with SPD and autism. It’s okay to be angry that the universe saw fit to give these challenges to your son. Just find a way to channel that energy; you will feel infinitely better once you have a plan.
6–Don’t worry so much about what other people think and say. This is so important, but seeing as how I still struggle with this issue, I don’t know how much advice I can offer. Still, forget about the people who are critical. They have absolutely NO idea what it’s like to live a day in your life. And they just do not matter. Really! They don’t.
7–Give yourself a break. You’re doing the best you can, and you need to take care of yourself if you can ever hope to help your kids. Take time for yourself and don’t forget about your passions, like writing. Also, when your weight fluctuates as a result of stress, forgive yourself. After all, you are under tremendous pressure; criticizing yourself is only going to exacerbate your stress.
8–And now for potty training. Just let it go, it will come. It really will. It won’t come when you want it to, and Danny most definitely will not be potty trained as early as everyone says he should be, but it will happen.
Just have patience, make sure you always have plenty of bleach on hand, and remember that this difficulty is not his fault. Or yours, for that matter.
9–Be honest with your family and friends. Don’t downplay your struggles just to avoid being pitied. People want to help. And they can only do so if you tell them what you need. Pretending everything is fine when you’re barely hanging on doesn’t do anyone any favors.
On the other hand, be very careful who you turn to for help or acceptance. Just because people call you a “friend” doesn’t mean they are kind or validating, so quit looking to them for something they can’t give you. There are people in your life who are toxic and selfish, people who will suck the life out of you if you let them. Get rid of them. You don’t need “friends” like that, especially now!
10–Enjoy your children. Take time out from all the worrying to just have fun with your kids. Believe me, in the next 7 years, you are going to have LOADS of fun. While you may have to adjust your expectations, you will still be able to do so many great things with your kids. Sure, Disney World may not ever happen, but let’s be honest here: you HATE amusement parks as much as your kids would. Face it, your kids inherited many of their sensory problems from you. That’s ok! Use that knowledge to empower yourself.
11–You can handle this. You really, really can. It’s going to be so hard. You’ll cry oceans of tears in the years to come. You’ll rail against God and be snippy with your mother. But you are strong enough to handle this. You really are.
And so are your kids.
Future Patty, the SPD mom who is not just surviving, but thriving. Honest!