July 1, 2004–a day when I said one of the dumbest things I’ve ever uttered in my life.
Richard lay half reclined on a hospital bed in the oncology ward, his khaki-clad legs crossed casually atop the neat white blanket and his shoes suspended carefully off the side. Not one to make a mess. The ambulatory center was full that morning, so they had to put him in a regular room for his transfusion. It had been 12 hours since a hematologist/oncologist here in town had confirmed that Richard had leukemia. And not the good kind. In another 12 hours, he would be in Baltimore, admitted to Johns Hopkins, but he had to receive some platelets before any doctor would allow him to make the trip.
We were both in a blind panic, but pretending that everything was going to be fine. Just. Fine. (smile)
His contract at the university had expired on June 30, the day he got the news. He had a new contract sitting on his boss’ desk, ready to be signed. What if she found out that he wasn’t going to be able to teach that semester and pulled the contract…along with his health insurance? I, in panic mode, suggested he run over and sign it before anyone said a word. Richard, being honorable, called her to explain the situation. His boss, also honorable and kind, told him that he was cool–he had a job and insurance and her full support.
Here’s where the stupid utterance comes in. While Richard was on the phone that day–with his parents, his friends, his boss–he broke the bad news over and over and over. Even while putting a chipper spin on it, he kept saying, “I have cancer.”
After he hung up with his boss and we took a deep breath about his health insurance coverage, I said, “Stop saying ‘I have cancer.’ You don’t have cancer cancer…you have leukemia.”
He looked at me across the IV pump pushing blood and platelets into his body and replied, “And leukemia is….what?”
“Cancer.”
We laughed, but I’ll never forget the feelings that were piling up inside me as I sat there by the tidy white bed watching someone else’s blood drip into my sweetheart. All while he called person after person and said, “I have cancer.”
All of those feelings added up to NO. No no no no no. NO. I refuse to believe this. No. Nope nopety no.
I don’t want this to be true.
It’s called denial, and it exercises a powerful pull. If I can just prevent this from being true for a couple more hours…NO.
I’ve been thinking about the “cancer cancer” conversation over the last few days. When I wrote about my fears regarding Carlos’ speech problems, several of you who are educators (or with-it moms!) commented about the tendency for people to deny that their child might have a problem. “He’ll grow out of it.” “Boys will be boys.” Teachers dread having to break the news that a kid needs extra help. I hear you. I blanched when I got a packet of forms on his first day at the new preschool and the header said “Special Education.” That voice of denial in my head said, “What?? No. He’s getting specialized education. Not…that other thing.”
La la la la la…my kid is in Specialized Education. It’s tooooootally different.
Well, regardless what we call it, Carlos will be getting every kind of education we can find for him. In the words of his pediatrician, “We don’t hide from this.” I hold on to that.
Being afraid of a word is OK, I guess, as long as I’m not afraid of the work.
You know I’ve been there (still am) with Jacob. My third child who’s a boy and whose sister would do anything for him so we couldn’t tell how much of it was a delay and how much of it was an “issue.” At 18 mos the pediatrician asked, “What words does he say other than Mama?” My response was, “Mama. His multi-purpose word that means everything.” Thank goodness our doctor advised us to go ahead and start the evaluative process rolling — just in case. After 18 months, when he aged out of Babies Can’t Wait, he was determined to not need services through the public school system.
Even WITH that experience with THAT child, we missed the red flags about his other language delay issues. By the end of preschool, I knew something was “off” and also was confident enough (since he was my third rather than my first) to listen to my gut instinct and stand firm with his teachers when they kept saying that it was “developmental” and he’d mature out of it. Turns out he has dyslexia, and guess what? ALL of his little hiccups along the way were indicators. Hind-sight truly is 20-20. But … after 18 months of (gasp) Special Ed services at school (he was pulled out for reading and had a resource in class for writing) and intensive private tutoring, he not only made up the gap, he is now ahead of grade level and a rock star at decoding words. You would never know that he still struggles with reading — you’d think he’s just a slow reader.
All this to say — cut yourself some slack. This is why we have doctors and education professionals. And also, learn all you can about what you’re dealing with, so you can have the confidence to stand up to said doctors and educators if the need ever arises. And also, learn from the experiences of others. Don’t look for him to have all the issues you hear about (like dyslexia) but be mindful. One of the greatest assets I have in my “mommy treasure box” is the collective experiences and wisdom of my other mommy friends. It makes navigating through motherhood (issues or no) infinitely easier. And I can honestly say that it has made navigating the “special” world of IEPs, 504s, etc much easier for me.
I meant to say, we didn’t know how much was a delay and how much was him being “Prince Jacob.” 🙂
That’s the same boat we are in. Half of the things that he was assessed as “not able” to do…we had just “never asked” him to do! Now he’s learning that we have to use words to tell other people what we need.
Amen, amen, amen! I’m so glad I have you on my team. Now I need to look up what a “504” is…
In very simplistic terms, a 504 is like an IEP but for a child who needs services due to a medically diagnosed condition. An IEP does not need a medical diagnosis. Jacob does not have an “official” medical diagnosis because the school did all the testing and they cannot diagnose, and I don’t feel the need to drag him to a doctor for a very expensive testing process that will result in no change in his services. So he has been “identified” rather than “diagnosed” and his official “issue” is “specific learning disability in reading” — also known as dyslexia. Make sense?
A 504 is for when you have a student who has, say, sensory issues, ADHD, ASD, etc which are medically diagnosed and which require interventions or accommodations (e.g. sensory room, smaller class sizes, additional time for testing, etc.). At least, that’s how it’s been explained in a nutshell to me.
After several years of seeing what could be red flags for Josh, I finally bit the bullet and took him to a fancy doctor for evaluation. He was diagnosed with dysgraphia (kind of the flip side of dyslexia, except with writing) and visual perception and sequential processing deficits. We just went through the initial process with the school because I want him to have a safety net (mainly for writing assignments) and they told us that he qualifies for a 504 rather than an IEP. I don’t care which, as long as he gets what he needs to help him to be successful.
We were very fortunate because after one meeting the team decided to implement a 504 for him (basically his only accommodations are extra time on writing assignments and the ability to type assignments instead of hand-writing them) on the spot. The other two issues are going to be harder to address, but it’s a start. The one frustrating part was when the AP said that they’re not considered to be a “disability” because he is making Bs — it would be different if he were failing. I argued that even so, he is performing WAY below his potential so there is a definite impact. Sigh. Baby steps.
And in the meantime, I am beating myself up for not acting sooner for him. I’m a great advocate for my youngest — not so much for my oldest. But I figure, it’s never too late. Sigh.
I made the same kind of decision regarding the fancy doctor–why follow that route when the school district can provide more services? Thanks for sharing all this background. It all makes sense when it comes from someone I know!
Been there, done that. My “special ed ” kid graduated from Johns Hopkins. Sending good thoughts.
hahaha…bless his poor little heart!
Wherever Terri is I am sending a big warm hug and a sigh. Friends are our greatest treasures.
BG
Isn’t she awesome??
My (now-PhD) son was in the gifted program beginning in 1st grade. He was ALSO in special ed for speech. I was a little freaked out, too. The program helped him, quickly and efficiently (I still remember his teacher and this was almost 30 years ago!), but it’s sad the special ed stigma persists. It covers a lot of ground, especially these days with the autism spectrum.
Carlos may be on that spectrum and that’s what keeps throwing me….as if it will make him a different kid! He’s already whatever he is and it will only help to know how to help him.
My fourth grader just “graduated” from speech at school. He was actually basically kicked out because they felt he had progressed as far as they can help him. Now, it’s not that he can’t say his sound correctly. It’s won’t. He’s kind of lazy. People understand him. You just know when you’re talking to him he has *slight* speech issues. But he is in AG classes and blows the lid off all of his tests. It’s strange to have this super smart kid who can tell you all about complex scientific stuff — with a speech impediment. I love my Jadon so much. He is ethusiastic, confident. The day he graduated, he asked if the school could announce it over the load speaker. The speech teacher said most kids are embarrassed they have to go to speech and tend to down play it, but not Jadon. It has been a growing lesson for me. Sometimes when we let go of our idea of perfect, something comes along that is beyond our concept of perfection.
Know that u are not traveling any of these roads alone … Love you! Hang in there …
Absolutley! Imagine what a mess I would be WITHOUT y’all!