No. It is not about nights with new Meters Man. Get your minds out of the gutter, folks!
Every few months or so the phone rings. Late. very late. And on the other end is usually a sobbing friend or sometime a stranger that will become a friend. Tonight it was a stranger that was my friend a minute into the phone call. She got my number from another mom. This how it always goes. A few mothers that I now consider my closest friends did the same for me many years ago. They became my mentors and idols in Aland.
Numbers are passed to each other in hushed hallways at schools, in therapists waiting rooms or through the magic of email.
Call her for this and this mom for this. She knows how to do _____. She can you get you in ______. Her child can do _____ now. They sued____school and won.
And the worst is we always say, Don’t tell anyone I told you to call ____________. Or to tell them ___________, so you can get services.
Then always ends with, ”I know how you feel. Keep me posted. Let me know what happens. Jut don’t tell anyone I told you to call__________ and to ask for _________.”
It’s like a secret society we create. Working a system that is as broken as we are at times. Hush, hush . . .shhhh! what are we so afraid of? Is there a prohibition on sharing A info so your child can get services, education and therapy? shit. IL is 50th in the country for disability. So, yes it is like the prohibition.
Limited quantity and quality. Lots of demand. No one official willing to help. G-d forbid you want some biomed intervention.
Autism Prohibition.
That is what we have folks in 2009!
I just googled Autism Prohibtion and things came up. Try it yourselves people. Watch what comes up. Will blow your mind.
ok back to the phone call:
She is crying in her closet. I am standing in my pantry trying to figure out what to put in Boo’s lunch because she “is like so bored with peanut butter.” Within minutes I am crying in my pantry as she lays out her story to me. The emotions all come flooding back to me. Now we are two women crying in closets. And I wish we were just crying over the jar of salsa I dropped or crying tears of joy.
We are not. We are crying over crushed hopes. She just got the diagnosis and bs talk about he will never______.
She wants to know where to start.
What would I have done differently?
This is always the hardest question to answer. Would I change anything. Yes. Some things I would, but not most of it. This journey is not just about her development. This journey will forever be the most transformative experience of my life. How can you want to change that? I’ll never know.
So I start. For those of you new to Aland. These are my wise words of experience.
1. A lot of the “experts’ will tell you to get a psychologist for your child. Get one for yourself first. You are going to need counseling. Get it sooner rather than later. Get it with someone that has worked with families affected by autism before. Do Not let it be the same person you take your child to. You need your own space and place to vent your emotions-the good, bad and just ugly. It is worth the money. I realize you need the $ for your kids therapy, but either get a therapist or find a friend that is like a friggin’ rock.
2. Gather your girlfriends. Only the closest ones. You will need them. Hold them tight and they will hold you tight. The ones that don’t may disappear, but now you know who counts.
3. Just start whatever therapy you can. Just start. Something at first is better than nothing. Then keep the therapists that speak and listen to you. Get rid of the rest. Doesn’t mean they are bad just means they are not the right for you.
I love me some DIR/Floortime. But now there is this cool model called SCERTS tthat didn’t exist when we got going. Or maybe RDI is for you. Just go the building relationships route, even if you go ABA I beg you to throw some relationship therapy model in there. It is good stuff learning how to build relationships. It transfers to all aspects of your life. If you are a single mama you will never have another date where you don’t look at the man sitting across from you wondering if he has enough social emotional availability to be with you.
4. Talk to the mothers in the waiting room. Trust me. They want you to. Just make the first move. do it. I wish i had done this sooner.
5. Listen to your mama gut and never stop asking questions. You know what is best even when you think you don’t. You do. and BTW if that gut of yours is telling you something is wrong with your kiddo’s gut then go check out biomed interventions.
7. Find a brand of $5 wine you like and buy a case or a good margarita blender. Not to drown your sorrows in. To celebrate every damn small victory. Every damn one. It could be pointing, it can be sayng “hi,” it can be acknowledging you exist or a successful trip to Target.
I won’t lie. You will have some very dark moments besides the ones sitting in a closet crying to a friend, but there will also be amazing incredible moments of joy. sheer joy.
This development path you are about to start together is not always fun, but it will change who are for the better. And that is worth celebrating every damn part of the way at every twist and turn thrown at you.
That is what happens late at night sometimes at my hacienda. Other nights are spent dreaming of a better tomorrow of a new life in a new country when I finally make it across the border. I feel close to it because most of my nights are now spent making those plans and thinking about things besides A. I am letting go of fear. slowly. baby steps. I felt myself brimming with newfound optimism in this shit economy the other day. Lately, I feel less doom and gloom because I am moving forward. slowly, but surely.
