This is an open letters to the Mom who stopped and asked me about the Autism Awareness sticker on the back of my car yesterday.
Dear Mom in need,
I am sorry I ran out of time to talk to you more yesterday. I coulda have stayed and talked to you for hours. I hope you found your way here and see this, if not, I hope we see each other agains at daycare pick up time. If we don’t, here is what I want to say.
Keep fighting. Don’t give up. When you least expect it someone will come out of the woodwork to help you, support you, guide you.
Use your local Regional Center to gain knowledge through their resource center and services. They are able to diagnose. They are the “payor of last resort,” however if you have insurance and insurance says they will not pay in a letter, regional center will pay. Just know, you can never stop fighting, advocating, and speaking up (there are reasons why some insurances do not “have” to pay but that is too hard to go into here).
I have found noisy wheels get the grease in these situations. Noisy doesn’t have to be mean spirited or driven by anger, but it does need to be assertive and direct. A “never back down” approach perhaps is a way of saying it.
Here in Los Angeles, every year, there is a wonderful small event called Stephanie’s Day. It is sponsored by one of the local TV stations. The general manager of the station has a daughter named Stephanie who has autism. The amount of information you can get at this ONE event is incredible. For your first outing, I wouldn’t take the kids if you can avoid it.
Being a single mom, I know I can’t always work that out, so know, there are lots of things for the kids to do. I suggested time alone because you will want to be able to process the vast amounts of information that is being thrown at you. It is a lot. It IS overwhelming. It ALL is needed. If you have the kids, just fill up your bag, or two, or 10…. And then take it home and read it. Then call the places and ask questions. Never stop asking questions, you do not know what you don’t know! My new mantra for life. I ask it all the time. Whenever some one says … “Anyone have any questions out there?” I ALWAYS shoot my hand up and say, “Dear principal, teacher, doctor…. Can you please tell me what I need to know, because I don’t know what I don’t know?” Seems confusing, but slow it down and read it again, can you please tell me what I need to know? I do not know (am not aware) of what I don’t know (because these things have never crossed my path during my life’s existence before).
I went in, when I realized my son was not typical, with the mind-set of knowing nothing but in the end wanting a masters degree. Think of it as life college. You will have hands on classes in “language arts” (learning the acronyms alone are challenging not to mention if your child has their own speech issues), neuroscience, biology, chemistry, history, “social” studies just to name a few. This is what I meant when I said, this journey has been so rewarding at times. You will learn so much all in the name of helping your child. Your knowledge may help many children.
Never be afraid to move on if you are not getting your child’s needs met. There may be “the perfect service provider” who says your child has to be on a waiting list because this service or that doesn’t have the staff available. All that means is that “perfect” provider, isn’t perfect for you.
One last thing, sometimes, you have to make people hear you. My son was drowning in a general education setting. Drowning. I had to figure out what the trigger words were for the person whose attention I was trying to get. We’re the words, “Well then, I suppose you have just been put on notice and I will be holding you liable in the event that _________ happens with my child in this situation” ever used in the last few years? Oh damned straight they were. And will be used again, I’m sure of it.
I am proud of you for admitting there is a need inside your child that you are unable to meet alone. So many parents/caregivers are afraid of that. Fear makes us do crazy things. Let’s take our fears energy, and use that power to make us do crazy GREAT things for our kids, who simply, and in no other terms, can’t do it for themselves!
Image is of a car bumper sticker that is very similar to the one that has been on my car for several years