I have to start this post with a bit of honesty. Those that know me understand that I am a suck it up buttercup type of person. While I do believe that you get what you give, that if you embrace this world and are kind the world will be kind in return. I do not believe in the other-world, spirits or destiny. I believe we make our own destiny by the actions we undertake. For example I believe that if I stay up all night playing Cribbage with my best brother-in-law I will have a headache the next morning. If I run an obstacle race with Lauren I will be bruised but my stomach will hurt from laughing.
I have, no word of a lie, been asked to leave a spirit shop when I brought Tia (who does believe) to a mystic (?). I was told by the woman that I was cold and not only blocking the spirits but killing their desire to interact. Apparently I was also spiritually blocking someone’s uterus. Anyway, I left (without police escort!) and have led a very happy life even if the spirits believe in me as much as I believe in them.
Then I met Beth from NJ.
Beth is grounded. She’s a Jersey girl and although her husband roots for the wrong football team we bonded thru our PACS1 children. When I first met Beth I was (admittedly) surprised. She had a tattoo. Now this is not a judgement on tattoos. However in speaking with Beth and meeting her, she was the last person in the world I expected to have a tattoo.
Of a turtle.
A turtle. Of all things to tattoo on your body, she chose a turtle.
She told me it was her spirit animal.
I nodded politely (I hope).
Then she told me why the turtle was her spirit animal. She has twin girls, one of whom has PACS1. Where Bridget was undiagnosed for 5 years, Kelly was misdiagnosed for about the same. What Beth had come to learn was that Kelly was progressing at her own pace. Like the turtle, like Bridget, she is slower to obtain skills. But eventually Beth (and I) believe they will make it to the finish line.
This past week has been difficult. Yes, there have been huge and awesome days (hello bus!) but there have also been struggles. Bridget is undergoing a 3-year evaluation for the IEP process. Which (honestly) is just stupid. The 3-year eval is to see if your child still qualifies under State law to be on an IEP. Obviously Bridget is going to qualify. That’s not the difficulty.
The hit-me-in-the-face moment for me was hearing that they cannot do the “standard” WIATT testing on Bridget because she cannot do even the baseline questions. In my head I know this fact to be true. Bridget is not a standard kid, of course she cannot possibly pass a standardized test. I was told, “a test doesn’t exist” for Bridget. Instead they want to do observational testing: the Vineland and a Curriculum Based Assessment. These tests will be more informative than the “standard” testing, even with accommodations.
I understand (head not heart) that the ability to do a standardized test does not define Bridget. However these tests do more than qualify Bridget for an IEP. These tests are the basis for goals, for her next IEP and for determining what we hope she can attain. I know Bridget is not going to Harvard. But I also know that I want more for Bridget than for her to be living with us. I want her to be accessing and enjoying life.
I want Bridget to be included, not because by law she has to be but because she can be an integral part of society.
A few comments during this process have hurt and distracted me. I say this with the caveat that what I might have “heard” and internalized is not what the intent was by people who I truly believe care for Bridget’s future. Yet it hurt, my heart and my spirit to hear that my child who is now riding the bus was unable to be tested or evaluated using the test that is supposed to qualify them for special education.
Bridget’s warrior mom wants them to design a test that will showcase what my child is capable of; Bridget’s mom who sometimes cries at night despairs that her child who will never fit into the “box” SPED designs will just be shuffled along the system.
In the midst of battling these feelings I get a package in the mail.
Unbeknownst to Beth it was the reminder I needed. I have worn it ever since, a reminder to myself:
The turtle takes longer to get to the finish line, it will get there at it’s own speed and in it’s own time. But never doubt they will get there.
I know the 3-year evaluation is not the definition of who Bridget is or what she will become. At least in my head. My heart needs to remember that this life sometimes sucks, that while it will always be a fight to get Bridget the acceptance and education she needs, the heart is what will see her succeed.
Even if it isn’t at my pace but her turtle’s one.