First, let me say that we live in a wonderful country with so many resources for anyone with disabilities. It’s prudent that the agencies which govern those resources make you jump through a few hoops, to weed out the advantageous or greedy. I get it. But when there shouldn’t be a doubt that your kid is disabled, it is painful to wade through the paperwork and required tests necessary to secure the resources.
Today was a required psychological evaluation for Caleb. I fought the agency, begging them to understand how horrible this process is for him. He knows he should know the answer, but he can’t come up with it. A geneticist once told me when autopsies have been performed on kids with Caleb’s syndrome, they found cul-de-sacs where healthy brains would have freeways. There are some neural connections that will never form. I asked a representative of the agency, “If I gave you an IQ test in Mandarin right now, how would you do?” and was met with uncomfortable silence, then, “I’m sorry, but if you don’t do the test now, it will be required within six years anyway.” Best to get it over with.
Caleb’s last exam was about five years ago. His IQ was in the low 40s. As far as I understand, that is a pretty static number. There haven’t been any miraculous mental growth spurts or any indication that his score has changed. But government is government, and I get it. I just don’t like it, for his sake.
We met with a very kind psychologist who either wasn’t familiar with kids like Caleb or had only been on the job for a few days. He kept asking questions about sequencing, or asking Caleb to repeat words in a particular pattern. Caleb kept looking to me, pleading with his eyes for me to translate, as I always do. It wasn’t allowed, so all I could do was tell him he was doing a great job.
What the psychologist didn’t know was that Caleb’s day started at the dermatologist’s office, having three separate wounds cultured. On two they used a needle. On one a tiny knife. Blood was pouring out of his skin, but Caleb just took it, asking me “All done now?” He didn’t flinch or scream or anything he may have done 14 years ago. And I found something profoundly sad in that.
After about 20 minutes, the psychologist said, “He obviously is completely dependent on you.” In my head I repeated the Mandarin thing but in the office I just sat calmly and looked back at him. Then he told me that I was distracting Caleb (which I definitely was) and asked me to sit behind him while they worked on a series of puzzle matching activities. It is excruciating to watch any child shoot for the hoop and miss, so I sort of zoned out during this part.
I was watching doves on an adjacent building as they navigated the steep slope of the roof to get to the goodies in the gutter. More doves from another building saw this and all flew over in a great flutter of wings and chirps. Just as I was beginning to wonder, “If they have wings, why are they walking? Why don’t they just fly down?” several of them took roller-coaster dives to get to the better bounty on the ground. I was pondering whether they were scared while falling or if they knew their wings could save them, and then extrapolating how we humans might accomplish so much more if we lost our fear of falling when the psychologist told me we were done and we could leave.
“I have all I need,” he said, with a kind smile.
We had been there for 45 minutes of a two-hour appointment. As we walked out, I put my arm around Caleb, praising him and telling him how proud I was of how hard he worked. From the corner of my eye, I saw the psychologist watching us. I don’t know what he thought, of course, but I hoped that perhaps the next time he meets a young man who so quickly can’t meet the demands of a test, he will let him go sooner. It makes me weep that this world lacks the tools required to mine the vast intelligence that resides beneath the still pond of Caleb’s mind. I railed against the injustice of forcing him to conform to our world, our rules, our standards.
I don’t think any one of us could ever live and thrive in his world the way he has in ours.
“I don’t think any one of us could ever live and thrive in his world the way he has in ours.”
While I teetered between anger and sadness as I read all of your words — because even though my son has this syndrome and his struggles are different, I still understand your pain — this last line brought me to tears.
So often, I wish there was some well-known, well-spoken and well-respected celebrity who would be the spokesperson for this incredibly overwhelming and very misunderstood genetic disorder, and perhaps be able to bring awareness to both the professional and the common folk.
You write so well. I felt as if I were in the room with you, Caleb and the psychologist.
Much love to you, friend.
Somehow I knew you would understand that last line. Thank you for your very kind words. Hopefully this reaches more people who also need to be heard.