Let’s start by saying how happy I am that my wonderful husband was willing to blog about Patrick’s Make-a-Wish trip. (Vacations usually require so much time that I’m helping Patrick to sleep that I don’t get a lot of in-room type that I could type.. and besides, it’s nice to hear Dad’s perspective.)
But – this is a big, busy time for Patrick so I am going to jump in and blog, too, about some of the other important things that have been happening in our lives. One of the biggest of which is… Kindergarten.
Can you believe that? Patrick is in Kindergarten! We NEVER imagined or dreamed this when we adopted him, when he was in and out of the hospital all his first year, when his heart stopped, when he started to lose central line access. Age 5 wasn’t in our plans.
For 3 years, I have driven Patrick to school and lined up next to those great big Kindergarteners who lined up without their parents and who talked and played together. I’ve watched them play on the shared playground. I’ve watched the teachers come to lead them into the school and heard them chant, “Eyes forward! Feet forward! Hands to yourself, and voices OFF!” then fold their arms and file into class.
And until the end of last fall, I didn’t imagine Patrick among them.
And then, when it started to dawn on me that that’s where he was headed, I panicked. And I went on a crazy rampage to get him help because learning to read and write was so far out of the realm of what I imagined Patrick doing that I was afraid he was going to become thoroughly discouraged and give up.
I mean – do you remember the year he had last year in preschool? From the moment the special education teacher came out to ask me what could possibly have gone wrong in Patrick’s life to make him start acting out in class when he’d always done well before, I’ve been struggling to help him rediscover his confidence in school.
And yet, the ball was rolling and Patrick was headed into Kindergarten, whether I was ready or not. Last fall, we had a “kindergarten transition meeting” where we met with the nurse, Patrick’s preschool team and the upcoming kindergarten team to tell them all that they needed to know about Patrick’s needs. And it took an hour and the resource teacher, Ms. Kerkman, seemed to grow increasingly wide eyed and worried and grumpy sounding as the meeting went on. But, in the end, they promised him placement in a typical classroom with lots of help, including a one-on-one aide.
And then, August rolled around and we hadn’t heard any more and I started to worry and sent of an e-mail reminding the principal and anyone else I could cc what we’d been promised.
And you know what? They followed through! I got a call a couple of weeks before school started inviting me to come in and meet the teacher and Patrick’s new aide and the rest of the team who’d be caring for Patrick.
It came on the heels of the trip to Omaha (which I promise gets a blog post soon) and so I made a mad scramble to pull useful information together. The first meeting was to go over needs again and I drafted a new “About Me” document. I was very proud that I kept it to 5 pages. About me is found here, if you want to read it.
That meeting was good, but also frustrating, as the hour I was given didn’t even let me scratch the surface of what I thought they should know that would help him. But I reminded myself that there was a reason I’d written it all down. And we went on.
2 days later, we came back again, this time to meet Patrick’s aide and give her specific training on what he needed. They didn’t give me a location for the meeting, and so we got a late start. Again, there was barely time to scratch the surface. I had time to teach how to take care of medical needs, but nothing about behavior or sensory processing techniques before Ms. Kerkman came in and declared it time to go home.
And then, feeling completely unprepared, before we knew it, it was the first day of school.
Patrick was so excited! Dad came along to drop him off. How could he possibly miss such a big day? We waited, playing on the playground. Then the teachers came and taught the kids how to line up. I greeted Patrick’s aide and asked if she had any questions. Then away they went. Patrick came out at the end of the day beaming. I picked up Jimmy John’s and took him to the park so he could unwind and we could recap the day. He was so happy.
In his backpack that night was a folder of homework. And, as I looked through it, I was amazed.. He could DO all of this! It was on his level. Sure, it took a summer of hard work in Mommy School to get him to the point where it was possible, but even the reading and writing stuff? He could DO it!
The next day, I was invited to school. The goal: teach Patrick’s classmates about him. So I pulled together some pictures on my tablet and brought along Patrick’s little mini-me doll named Tubes.
The conversation went kind of like this. I showed the kids a picture of a group of kids and talked about how we are all different. Then, I showed the kids a picture of a kid wearing glasses and asked what they were for. (To help you see if your eyes don’t work right.) Then braces. (To help your teeth if they’re crooked.) Then a wheelchair. (To help you get around if your legs can’t walk.) We’re not sad about these things because they help us. Everyone is different and we all need different help.
Then I showed them a picture of a belly and we talked about what bellies do. They turn food into energy so you can play and grow. And if your belly didn’t work right? You wouldn’t be able to grow and play. So what can help? I showed them Tubes. I told them that Patrick needs to get his food right in his blood, since his belly doesn’t work. (Them:”Ew! Blood!!”.. Me: “Wait. Is blood gross? What is blood for?” One little boy: “It keeps us alive.” Me: “Right. Because it carries our energy from food.” Them: “Oh!”) We talked about what’s inside the backpack and how to keep the tubes safe. (Mainly, don’t play jumprope in them.) I told them to be careful they don’t get pulled because they go into his body. (At that moment, Patrick got up and walked away, stretching his tubes and the kids all gasped. So, I could explain that he knows how to not hurt his own tubes.)
Then I explained a little about food allergies and how they hide in foods that look safe. Then I told them about the brace he sometimes wear on his leg and how that doesn’t mean he’s hurt. (Which led into a 2 minute tangent about all the owies they have ever had.)
I wrapped up by telling them that Patrick has spent a lot of time in hospitals because he gets sick easy. I explained that meant he hadn’t had as much time as them to learn other things like talking and writing and rules for playing so he might seem to not know how to do those things, but that he was learning. I told them how excited he was to be as school with them and how much he wanted to make friends. This was met by a chorus of “I’ll be his friend,” and “Can he be friends with me?”
And you know what? Because kids accept difference so much better than grown-ups, they’ve kept their word. Patrick has friends. He is greeted by name and with hugs when he comes to school. He is happy and accepted there. Which is the best thing a mom could ask for.
Things were rolling along better than I could have ever dreamed. Patrick was actually making friends. We were getting a homework routine down, and would you believe it, after just a couple of weeks, Patrick’s reading sight words and tracing some numbers.
I’d requested a meeting with the district adaptive technology team. These are the people in charge of making “accommodations” for kids who have trouble with written or spoken language. With Patrick’s fine motor skills being very delayed, I’ve been worried that he might get frustrated with the task of writing or spelling. There were 8 people in the meeting, which was much more than I expected. Occupational and speech therapists, teachers, and me.
But the meeting went well. In fact, the meeting went wonderfully. Patrick’s teacher gushed about how much she loved him in her class and then told us that Patrick is about on level with his peers right now. I’ve never left a meeting so happy. We decided that this team will follow him throughout school in case writing becomes an obstacle down the road. And I knew Patrick was in the best of hands with a teacher who loved him and only saw potential in him.
And then, the next week, I went to pick Patrick up from school and one of the little girls in Patrick’s class ran right up to me and said, “Ms. Gough is going to go away and we will have a new teacher!” Then she bee-bopped away while I stood there wondering if I’d heard correctly.
But yes, the note in Patrick’s backpack confirmed it. The school had fewer kindergarteners enroll than they had planned on and the district decided that they had to cut one of their afternoon classes. Patrick goes to school in the morning, but since losing the afternoon class meant his teacher would otherwise be going part-time, Patrick was losing his teacher. Her last day would be the next day and then they’d have the substitute until they could hire someone new.
Yeah, I shed a few tears. And I played out several horrible scenarios in my head over the next few days. And I considered writing letters or protesting or pulling Patrick out of school. Especially when the next week I heard that they had no applicants and no long-term substitute lined up. But then I reminded myself that I’ve learned that fighting against the system and getting emotional don’t solve problems.
Thankfully, we had somewhere else to go for the week. Patrick’s make-a-wish trip meant that he could miss some time with a substitute. And I could figure out where to spend my momma bear energy when we got back.
But, a few days into our trip I got a voicemail saying that they’d hired a teacher and inviting us to a parent/teacher conference. Patrick’s new teacher, Mrs. Hunt, started the day we returned from Orlando. We sat down with her yesterday to discuss his needs. After a few minutes of me explaining medical terms for her, she stopped me and told me that she’d recently worked in the infant unit at Primary Children’s Hospital and, therefore, I didn’t need to translate for her. Not only did that make the meeting a whole lot faster and smoother, but it gave me some peace of mind as well.
Today was Patrick’s first day back to school since our trip and he seems to have done ok despite the interruption in routine and the new teacher. We’ll see what lies ahead.
Overall, though, this start to Kindergarten has gone much better than we’d have imagined. Patrick’s classmates were so excited to see him come back today. They wanted to hear all about his trip. One favorite friend immediately held onto his backpack handle and walked with him, comparing Disney experiences.
Patrick’s aide , Ms. Kim, has done such a good job taking care of him. And that is translating to him doing better in class and with his peers. She and Ms. Gough have built a great foundation for him to start with and I hope that he’ll continue to do well with this new teacher, as well.
But I still step back a bit in awe sometimes. It’s October. Patrick’s in Kindergarten. He’s learning to read. What an amazing place to be in!
Patrick Hoopes 