“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.
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Alyssa Adamson is a writer and blogger who resides in Brooklyn, New York with her three-year old daughter Scarlett.
The Art of Autism has been following Alyssa’s journey – the day Scarlett was first diagnosed. You can follow Alyssa on her blog I, Mother.
Alyssa, your post took me back at least a hundred years – to my first IEP’s with my son who is now 27 and doing pretty darned well in the world of 27-year-olds… You are not so naïve as I was. I trusted everyone and had to learn the hard way that I had allies in the IEP process and I also had a few significant adversaries… Over time I discerned in seconds who deserved my trust and who did not. Over time I ended up taking not one, but two, attorneys and an advocate to every IEP I attended, The school and its administrators thought me to be much wealthier than I was. Little did they know my two attorneys never charged me a cent. My case was too critical, my son, too precious, and I was a single mom in constant-anxiety – perhaps too darned pathetic to charge. Your characterization of “Mother-Beast-Mode” is apt – more apt than you perhaps yet know. Your Mother-Beast may well end up being Scarlett’s best friend… I applaud you, Sister-Mother-Beast! You go Girl. You will slip up here and there, but you will learn and mistakes often pave the way to our greatest successes! My heart walks with yours…
Thank you so much Nancy! We stand together as Mother-Beasts no matter how old our children are or how we figured it all out. You did all that was best for you precious boy and how you saw to handle it. I think it is a great idea to have someone with you that knows what you need or how to assist in negotiating, it is hard when you are so close to it. I personally had no one to go with today, but I did it all the same and I am happy to report that the outcome is overall very good. The only issue now is finding a seat at a school this late in the game but they are confident that she will be in a seat by the end of September. We are scrambling to get on waiting lists at the moment, but we are doing it. And that’s really it, we as mothers just keep doing it, and we do what works for us and vibes with our instincts and how we see our child’s future panning out. I had to admit some things today in that meeting that I was aware of but that I downplayed to dull the pain of it. I agreed to some extreme tactics I had not imagined she would need but when presented with cold facts on stacks of paper in front of you there is no arguing what your child needs. And the fact that they wanted to do as much as they could rather than deny my requests eased my gut even more so. Some people (which I didn’t know I was one of them until today) can separate the child and simply look at the piece of paper and the facts for a moment, and some people can’t and need someone else there to get through all of it, but neither is the right or wrong answer. It is the answer that works for your son, my daughter, etc. Thank you and know that my heart is also always with yours, even if we never meet. We are bound in this always.
Alyssa, this is Debra from the Art of Autism. Keri and I today were talking about how beautifully you write and we would love if you shared Scarlett’s first day of school story. We wish everything goes the best for Scarlett. Our heart is with you in this journey.
Yes, Alyssa! Please share more of your stories! Writing about experiences our children have had, those we have shared, and experiences we have had on our own, can be phenomenally therapeutic! Useful to others too! Please do share more! I studied creative writing for several years under a man who once commented that his class really was as much a psychology class as a writing class. And it was!
YES! I would love to do a piece on her first day of school. I am already picturing what it will look like in my head and I have already cried about it, haha. Thank you for your confidence in my writing and I look forward to reaching out and sharing with all parents and people with autism as Scar and I figure out our journey. 🙂
I hadn’t seen your post to me when I wrote my previous post, urging you to share your stories… The last line of your message struck a deep chord in me. As Debbie, Keri, and so many other mothers who read these invaluable posts would agree, even if we never do meet, we really are bound in this always as, in a way, our hearts beat together and there is GREAT power in our unity!
Alyssa, welcome to your new tribe :>) Here you will be loved and supported as you just begin this very long journey.