We Passed the Test
Posted on September 26, 2017
(Image of Collin sitting down in a room getting tested for his IEP with Mychi and the therapist on the side. Their faces are not showing. The test has 4 pictures of people in different places on or near a bike.)
Last week was filled with mixed emotions for me and Mychi. We celebrated Collin’s 3 years around the sun. There was a beautiful ceremony for him at his pre-school and he did amazing! (excerpts of the video are below.)
(Video of Collin showing photos of his family and himself during his birthday ceremony at school. There is a candle in the middle of the room representing the sun. The teacher is helping Collin make his way around the circle of the children, who are sitting in a circle.)
We also had our first IEP (Individualized Education Program) diagnosis evaluation meeting for Collin with the Oakland School District. The IEP is mandated by law for public schools to provide an education program plan for every student with a disability, which was only established in 2004 (!). Actually, IEPs are a real good thing and everyone should have one, but I digress.
We were warned by other parents that sometimes the school district will try to deny services especially since Collin is considered a “HFA” (high functioning autistic), but that wasn’t necessarily the case. Collin was amazing on the verbal and cognitive tests, but eventually his rigidity showed up and it was clear. SO yes, he passed the test and is on the spectrum. It feels funny to say this but it is true that our journey gets more and more real everyday.
On a good day or good moment, he presents pretty “normal” or neurotypical, as they say. He is super social, funny, and tells creative stories about his day. Then there are days and moments that Mychi and I brace ourselves on the things that can set him off. Somehow the rigidity has gotten worse. Last week, it was about wearing the PJs with the same matching pattern. The other morning, it was about toasting the bread with the tray in a specific way, then later in the day it was about having the same color lid for his sippy cup… there is more, but you get the drift.
No matter what, we know that he is our Collin and we love him <3. We need to keep coming back to the conditions we create for him and keep learning how to channel his strengths. And, it is also about us constantly having the mental and emotional space; space in the day for big or mini meltdowns, which take a toll and make us feel lonely. When things are not right, his meltdowns feel like he is putting his body on the line, a civil disobedience so to speak, throwing sand into the machine to get us to be more mindful, slow down, listen and hear him out. This may ring true for many children but I can’t help but feel this way as parents of a disabled child.
Then, there are moments that remind me that we are GREAT parents and that things are coming together. Collin started sleeping by himself last month (thanks to a sleep training class and Mychi’s implementation) but the process has not been easy. Over the weekend, he woke up one night screaming around 3 am. I immediately jumped out of bed and ran to his bed to see what was going on. I asked, “Are you ok? Do you want a diaper change?” He said, “NO!” Then he said, “I want teddy.” You see, we’ve been working on this for months!! I handed him teddy and he held his teddy and rolled over quickly falling back asleep again. I was surprised I was no longer needed but decided to lay next to him the rest of the night because I missed the feeling. Parenting is a trip!
We are grateful for our community for holding us in these difficult times. Again, the crisis and the world does stop because we have a autistic child. Mychi and I are still working to change society and are leaders in our communities. If anything, this has taught us deeply how we want to show up in this world and what to contribute to the many facets of our lives. Sometimes, I feel like our role – our intervention – is to spread love and compassion in these dark times. No matter if it is with family or in meetings, as we’ve become more open, more people, especially movement people, share their vulnerabilities as a disabled person or as a caretaker for someone who is/was severely ill and/or disabled. This also makes us see them differently and transforms all our relations. We have Collin to thank for being this catalyst.
In particular, we’re grateful for the disability community, parents of disabled children who have been so generous with their time, energy and lessons learned. There is nothing like it. Also, I’m constantly reminded of the disability justice movement has laid the foundation for so many of us. Like yesterday, hundreds of ADAPTers in DC laid their bodies on the line (again) to save Medicaid and healthcare for millions of us. They are the s/heros of the movement! SO YES, we passed the test and we’re proud to join of such a kickass team of awesome superheros.
Thank you all for reading and following this blog! It has given me nothing but joy and clarity in my personal and political work. Up next is a piece I’ve been working on on how Bruce Lee’s concept of “fighting offense and defense” has helped me in these times. Until next time!
(Images of our weekend, the highs and lows. From the right, Mychi, Collin and I in a selfie of a unplanned walk around Lake Merritt by our home. This was after a pretty bad meltdown; the next photo is of Collin eating breakfast and unhappy of me taking his photo; the last photo is a selfie of me and Collin pretending to do sad faces at a fun bday party at Shorebird Park in Berkeley.)