“The word ‘army’ feels so fitting because fighting for your child, no matter how small it looks from the outside, feels like you are mounting a siege against anything with a pulse and an opinion about your situation. Even if their opinion vibes with you, it doesn’t matter, you are still launching an interrogation to be sure that they are on board, on your side.”
By Alyssa Adamson
We are less than 48 hours away from the very first IEP meeting for Scarlett and I have to admit something: I am a little more than a little beside myself.
When I figured out what was going on, with the help of what would eventually feel like a small army of people, most strangers, I felt like we would never get here. The word “army” feels so fitting because fighting for your child, no matter how small it looks from the outside, feels like you are mounting a siege against anything with a pulse and an opinion about your situation. Even if their opinion vibes with you, it doesn’t matter, you are still launching an interrogation to be sure that they are on board, on your side.
Even if there is no threat, everything feels like a threat. Your sense of awareness heightens. You are stripped to that primal maternal skeleton, your ancient instinct, and you go over the top. Not to mention the life you are living outside of the mom bubble, assuming you are a feeling, breathing, living human being with friends and a job and families to deal with. That bleeds into everything else you do. I was so caught up in the moments of my life as we explored all of this new territory – territory, which by the way, we were never prepared for – and for some time, time seemed static.
Moving at no particular speed (though the weeks have sped so quickly overall this summer). Just these happenings that neither moved back or forward. I was forced to only feel RIGHT NOW while trying to grab onto what had already happened in my life and what was going to happen next just to get my bearings. So, you can’t blame me for not knowing whether to laugh or cry tonight as I realize that this is actually happening and so much progress has been made.
You see, amidst the emotions that emerged, so did a very rapid renewal of my life and my direction. And more confidence flowed in and more knowledge was attained and I went into mother beast-mode. And with that, and a firm diagnosis, I went to work. I knew we could not wait until therapies started or we were called up from waiting lists. I knew we could not wait for this meeting.
So we started here at home. Toy kitchens were placed beside the real kitchens and out from her rooms so she could understand how to play with them. And now she does. Tea parties are no longer splash parties. She is satisfied sipping on air. She finally plays with her doctor kit using her dolls and not just us because I have integrated the dolls into trying to show her certain actions or feelings. No more flinging them around the room.
And Scarlett tries to have conversations. She actually tries to be a part of a conversation. Some of it has to do with all of her new skills I previously mentioned. She can talk about cooking. She can talk about her doll’s diagnosis.
And some of it has to do with the fact that I HAVEN’T SHUT UP SINCE MAY 11. I talk to Scarlett even when she is silent, even when she is sleeping. I am surprised I have a voice. I try to show her EVERYTHING. Every color, every bird, every cloud, every crack in the sidewalk, every crushed up leaf, every pair of socks that comes out of the laundry. I fully engage her to see every inch of the world around her when I have the opportunity.
Sometimes that means taking her places where we run the risk of a fit of laughter and general misconduct at best or a screams-to-make-your-skin-crawl meltdown at worst. Well, so be it. We should never be afraid to try to open them up to the world on our own. They will remember all of the lovely people who helped them along the way but you want to be sure that YOU are one of those people and that you NEVER showed fear or unhappiness towards them. They must know that you never allowed this disability to throw a barricade between you, no matter how heavy your heart feels from carrying the weight of battle on top of it.
These quieter moments, in between cries, are a cease-fire; and the world dictates these moments to you as the mother, the colors, the birds, the socks. And you can either turn on yourself and begin to pile on self-blame because your inner voice is allowed to scream when all else goes silent, or you can block out that voice, embrace living RIGHT NOW, and you can become your child’s best teacher.
So am I emotional? Yes.
Do I think I will try to hide in the closet on Thursday morning when I am getting ready for this meeting? It will cross my mind, yah.
Do I feel that all of the insanity up until this moment has thoroughly galvanized me for the ultimate battle? Uhm, YES!
Bring it on, IEP. This armor is now permanent.
Alyssa Adamson is a writer and blogger who resides in Brooklyn, New York with her three-year old daughter Scarlett.