I remember..

I remember you..

Your reactions when you first started to notice differences in your child. How you would talk about his play skills. “He is such a goofball”, “He is so independent, just wants to do his own thing”, or “We haven’t taught him how to play with that yet”. All said with love and a little laugh. I know inside you were freaking out that someone would discover there was something wrong. I remember you keeping that smile on your face.

I remember you..

Those horrible calls you had to make trying to finally get a diagnosis. To the doctor, the school, the regional center, back to the school, back to the doctor, back to the regional center. I remember how your husband had to take over on the calls because you were seriously losing it over a very broken system. How excited you were when you finally had an appointment. Then how crushed you were when you left that appointment. Severe Autism?? Possible Intellectual Impairment?? Non-Verbal??

I remember you..

Going online and reading EVERYTHING. Causes of Autism. Symptoms of Autism. Treatments of Autism. High Functioning vs Low Functioning. Autism in kids. Autism in adults. Siblings of Autism. Autism Techniques. Autism Therapy. Your eyes were sore and your brain was overloaded but you kept searching. I wonder today what you were searching for so desperately. And I think it was a way for things to be “normal”. To find out what you did wrong and how to fix it.

I remember you..

Reading that book.. Oh, that book that freaked you out.. It was about that mom who went full steam ahead on all therapies and diets. The mom who quit her job and ignored herself and her family to “cure” her child. And that one part.. How she was losing steam but still found the effort to attend a seminar. And how she literally passed out at the seminar due to sheer exhaustion. I remember how that freaked you out. How you knew that couldn’t be you. And yet, could it? How to this day you still find it hard to read books or watch movies or TV shows about Autism. You live it but these stories are always different than your own. And that is confusing and frustrating.

I remember you..

How you still went full steam ahead and booked as much therapy as possible. I know how you hurt those first two weeks of ABA when he was literally screaming at the table for a solid 2 hours. And you were told this is all part of it. It was a hard choice to make and you didn’t quit and Z finally stopped eloping while doing work at school. Believe me, you question this choice even to this day. You end up doing ABA off and on for the next 10 years because you hold out hope things will pay off. Because you still find yourself going “full steam ahead”.

I remember you..

The guilt each time you quit a therapy. How hard it was to say “we do not want to do this”. Even when you knew in your gut it was the best choice for your family at that time.

I remember you..

Worrying about everything. What therapies will we do next? How do we get insurance to pay for more? How do we let our daughters have their own lives when all focus is on Z’s needs? How will you keep him happy? How will you give him a good life? How will you compensate for his lack of friends? Will he still live with you when he is an adult? Will you ever get a break? What about your husband? Will you be able to have date night? Will you travel together? Can you have another child? Can you work full time? How will you save enough money for when you are gone? Who will take care of him?

I remember you..

How the distance slowly widened between you and your friends and family. How you stopped being able to go to events or even talk on the phone for longer than 5 minutes. How hurt you were when family thought you didn’t show up because you didn’t love them. How tormented you were by the internal struggle of what you thought you were “supposed to do” versus what you “needed to do”. How you felt like you dropped off the face of the earth. How lonely you were, and still are.

I remember you..

Trying to put him to bed for a full hour, literally holding his little body down to stop him from moving. Getting up in the middle of the night with him night after night because he was unsafe by himself. Trying to “act normal” the next day even though you maybe only had a couple of hours of sleep. How you watched the bags under your eyes get bigger and darker with each month. The moment you realized you were aging faster due to the amount of stress each day.

I remember you..

Filling out paperwork. Oh so much paperwork! Each year, each new agency, each renewal. The same paperwork, yet not the same. Trying to remember when Z walked, sat, first spoke, ate solid foods. 10 pages, 15 pages, even 20 pages at times. Does he do this? Does he do that? What happens when this? What happens when that? What are your concerns? What are his successes? Does he have friends? On and on and on. Printing up all of this paperwork, copying the paperwork, creating binders upon binders.

I remember you..

I mourn for your low times and celebrate your high times. I am you and yet not you anymore. Each moment you will grow, your outer shell will get thicker. You will learn your lessons and sometimes make the same mistakes. You will lose some people and you will gain more extraordinary people. You will stop searching so hard and have the confidence in your own warrior mama skills. You will stand up for yourself and for Z like you never imagined. You will speak your mind in advocacy. You will do what you need and want to do, not what is expected of you.

Each day will be hard. Some will be harder. But you will make it through to the next day. You will still have that paperwork (sorry girl!). But you will understand what goes behind your answers and learn from it. Sleepless nights unfortunately will be your thing. But you will appreciate the quiet that only 3am can bring. The stillness that occurs when everyone else is resting. You will appreciate the bags under your eyes and the aging face. It means you have been through it and came back out to fight another day.

I am celebrating all that you went through so you know you weren’t alone in those dark times. I was there too, just waiting to emerge as the true warrior mama. Holding your hand and whispering “we got this”. That is in the past and it is our past. We needed it to be where we are today.

And I know that my future self is with me right now holding my hand and whispering “we still got this”.

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