Holiday Spirit...Every Day

This is my pre-Christmas update—a story I’ve been wanting to share for a while. One that has touched our family’s heart. We hope it will touch yours, as well.

Zane’s had many wonderful experiences in his academic life. He’s had the great fortune of being included in the general education classroom since preschool. I think this has benefited him tremendously—especially since he’s so social and such an interpersonal learner.

But this third-grade year has been his best yet. Not enough can be said about how respectful the school and the students are with Zane. His elementary school has fostered a culture of acceptance. But it goes much deeper than that. Zane’s third grade general ed. teacher is beyond phenomenal. She has created a classroom that includes Zane in every possible way. One of the things she has put into place is selecting a buddy for Zane—a kiddo who helps him out during his time in her room.

I’ve seen buddies in action. I used to teach third grade and have been privy to students helping others in the classroom who need extra attention. Usually, they are girls who like to play a nurturing roll to fellow students who have an IEP. It is a beautiful thing. But it doesn’t compare with Zane’s buddy.

In the interest of privacy, I will call him T. He was not the first choice to be Zane’s buddy. In fact, I was told he didn’t make the initial list at all. There were some concerns about him. Again, in the interest of privacy, I was not told what these concerns were. I’m assuming behavior. But somehow the teacher believed in T. and thought it would be mutually beneficial to pair him with Zane. So he became the buddy.

I was invited to the classroom to observe Zane and T. together. I rolled Zane from his special education classroom to general ed. As soon as we entered, T. zipped to Zane’s side. I am used to taking the lead with Zane, so I was stunned to watch this eight-year-old boy in action. He greeted Zane, fastened the FM system (the microphone for Zane’s hearing aids) to his own clothing, put Zane’s tray in place, rolled him over to the math table where they were getting ready to play a game, and put a contrasting sheet beneath Zane’s tray so Zane could see the dice. They sat side by side. Zane reached out every once in a while to touch T.’s arm. 

There were three pairs of students at the table. Zane and T. were clearly a team. T. always turned to Zane to ask him what he thought they should do. Then T. helped Zane use his Go Talk (communication device) to make choices. They won the game.

Zane and T. were not just buddies. They were friends.

When math time was over, I wanted to be helpful in getting Zane back to his special ed. room. But T. had a system. He knew where to put the tray, how to undo the brakes, how to get Zane ready to go back. I asked if there was anything I could do to help. He finally said I could carry Zane’s tray.

Before I left that day, the teacher told me that T. had made some bad choices earlier in the week at recess. She spoke to him. T. reflected and said to his teacher, “What would Zane think of what I did?” He realized Zane wouldn't like his behavior. He was emotional, afraid of losing Zane as a buddy, and sorry for what he did. So not only is T. helping Zane, but Zane is also helping T.

For a Christmas gift, T. gave Zane a framed photograph of the two of them buddied up at the Turkey Trot—a Thanksgiving race around the middle school track. It sits in our kitchen, and I love looking at it from time to time.

This is our future. This is hope.

Right now, I feel like we’re living in selfish and volatile times. People are so concerned about their personal rights. I see a lot of adults and kids who act as though they are owed things, entitled. Many don’t even hold doors open for others, smile, or even pretend to be friendly. Yet seeing someone like T. gives me faith in our future. One eight-year-old boy has shown me the meaning of what it is to be human, to have compassion, to care about someone other than one’s self. And that gives me hope. 

Happy Holidays!

Happy 9th Birthday, Zane

It's been an eventful year for Zane, and I promise to update on the many things that have happened since my last posting in April of this year.

But today I want to wish my beautiful boy a happy 9th birthday. He has been through so much since December 22nd of 2006. He spent his very first day of life in an incubator in the NICU. I took one glimpse of him before nurses whisked him away. Then I didn't get to see or hold him for the rest of the day.

And while it is not always easy (and is often a whole lot of work), Zane has brought us so much joy and happiness. He can light up a room--light up a person--with his smile. He is an amazing son, brother, grandson, friend, student, and hospital patient. He touches so many lives by simply being here on this earth. He certainly touches mine. He has changed me for the better, showing me the path to greater compassion for others, teaching me how to appreciate life and what I have.

Happy Birthday to my baby. Because no matter how old you are, Zane, you will always be my baby.

Love you,
Mom

Steady Stream of Appointments

Just as I suspected, it was next to impossible to go even a month without a Zaner appointment. A few things happened:

Zane saw his orthopedic surgeon at the beginning of March. The doctor wrote some scripts, made a referral for a hand specialist, and sent us down the hall for Zane to be casted for SMOs (Supra Malleolar Orthosis—better know as ankle supports). Because of those things, we wound up with a couple of appointments at the end of March: One to try on and pick up the SMOs, and another to be evaluated for new hand splints.

However, Zane got sick. He wound up with a pretty nasty upper respiratory infection, which required the full regimen of nebulizer treatments, Flo-vent and Flonase, saline solution, extra fluids, and suctioning. I cancelled his two appointments. They were pushed to this week.

In the meantime, I’ve been trying to get a new contact prescription for me. But I’ve run into more trouble than I’ve ever experienced since I started wearing glasses at age 5 and contacts at age 14. The doctor cannot get my contact prescription right. So personally, I am going into my third office visit just to be able to see without blurriness and without feeling sick to my stomach. My blood follow-up and my annual mammogram (necessary because of the breast cancer back in 2012) are on hold for now. There are only so many appointments a woman can do in the course of a week, especially without jeopardizing employment.

Though all of this, we’ve been working overtime to get him a stander for both school and home. What a challenge that has been on both fronts. Yikers!

Zane is finally feeling better, we picked up his SMOs today, and he should have hand splints in 4-6 weeks.

We may be able to go through the rest of April without seeing any specialists. But heading into May, he has an appointment with neuro and a tentative lengthening with ortho sometime that month. But at least he’s feeling better and getting back to his happy self!

Going for a Record

I’m trying to reach a record. It definitely won’t make the Guinness Book, but if I can achieve it, it will make me happy—which is even better. What, you ask, might this record be?

Sure, I’ve thought it would be nice to train for a 5K. But that’s not it. Yet. It might be writing over five thousand words in a day. Haven’t done that yet either. So what is it?

Going at least a month without a doctor’s appointment for Zane.

As it stands right now, we have at least one appointment every week. And let me tell you, it’s exhausting. Because there’s still that little thing called work and the other little thing called maintaining the house. Not to mention my other kiddo and therapies and writing and blah, blah, blah.

Since my last update, we’ve seen pulmonology, urology, the allergist, the ophthalmologist, and gone through Zane’s first lengthening after spinal surgery (something I may have to save for another post). And tomorrow, we’re back to the urologist for another test. After the first week of March, I have no more appointments set for Zane. Oh, don’t get me wrong; the doctors want to see him. Pulmonology (a 45 minute drive for a 5-minute appointment) said, “I’ll see Zane back in three months.” Uh…I don’t think so. We’re overdue in seeing neurology, but those seizures seem, for the most part, under control. And yeah, I know another lengthening is supposed to happen in May. But that’s May. I need to live it up while I can through most of March and hopefully all of April.

But I am a realistic woman. I know this can’t last. Zane is bound to get sick (hello, pediatrician), and that ophthalmology prescription is still sitting in my office (it will need to be filled). And what’s that? Speak up! Oh right, he’s due to have his hearing aids checked. But, you know, that can wait for a little while. I need some time to take care of me. I need to see my own doc, have some labs of my own redone, get my own new prescription for contact lenses and glasses. Not exactly a vacation or true reprieve from the medical world, but it’s a break nonetheless. And Zane needs a break, too. Honestly, the poor kid spends so much time in waiting rooms and in therapy that it’s surprising he smiles as much as he does.

I have been counting down the appointments starting this month. We have two left until we both get a break—a break we can rejoice in and put in our own record books.

Dentist

It’s been a year since Zane’s been to the dentist. It’s not because I’m a horrible parent who doesn’t care about her son’s teeth. Mainly, it’s because I tried with a new dentist last January, and the dental office failed us.

So here’s the story…

In January 2014, I took Zane to a new dentist, one who was highly recommended by his pediatrician at the time. The doctor told us this dental office specialized in kids with special needs. Wow! Awesome! Sounds like the place for us. So we went. Never mind, the waiting area and the office itself left a lot to be desired. It’s the level of care we were there for. The group even has a website that advertises their specialty.

We waited for 40 minutes or so and were finally taken back. This dentist (the one who specialized in kiddos with special needs) didn’t even look in Zane’s mouth. The hygienist did zippo. Zero. No cleaning. We didn’t even get a toothbrush. Instead, they made assumptions about Zane’s oral care and immediately moved to schedule him for a sedated deep cleaning at the hospital. Okay…I wasn’t thrilled, but I pushed through with the plan since he’d had one of those before.

Life went along and I didn’t hear from the dental office about the insurance approval for the hospital cleaning. That is, until seven months later! Out of the blue, the office calls me, tells me they have approval, and wants to schedule the cleaning. Um…

Zane was getting all geared up for spinal surgery, so I told them it was not something we could do at that point in time. (But six months ago we likely would have swung it).  So I ditched the dentist. I asked Zane’s new pediatrician for a dental referral. They had just the dentist for me! They gave me the number, and I called and made an appointment. But then something didn’t seem right. I looked at the address. It was in the same area as the dentist we got rid of. We drove by. Sure enough, it was the exact same dental group. I canceled the appointment.

I took matters into my own hands and searched the Internet, researched dentists on my own. I couldn’t find any dentists in our area who specialize in patients with special needs. But I found one that seemed kid friendly. I called. The receptionist said she wasn’t sure about sedated deep cleanings. She asked a lot of questions about Zane's disability. But she made an appointment and said I could chat with the dentist about my concerns for Zane. Let me tell you, this was the best decision ever! The employees were so accommodating and friendly. The dentist not only examined Zane’s teeth, but he cleaned the tartar off some of them. Zane must have sensed their kindness because he even allowed them to get bite wing x-rays (much to my amazement). The dentist gave me the lowdown on Zane’s current situation: teeth coming in, expected teeth coming out, he has good oral hygiene (pat myself on the back for that one), and he doesn’t need a sedated deep cleaning at all.

So in summary: you don’t necessarily need a professional who specializes in special needs. Because, in this case, the “regular” dentist was far superior than the “special needs” one.