My special kid – Page 2 of 2 – Not so rare (not so special)

Love letter to my boy and his eternal childhood

Yesterday, Charlie ran into my room for the tenth time of the morning, causing mayhem by knocking my jewelry off of the dresser and playing with the buttons on the window air conditioner. As I pulled him (all 60+ lbs of him) up onto the bed, I tried to distract him with the television. I entered “12” into the remote. “12” is my go-to-channel for every TV-related emergency: it is public television. Curious George was on. And while it did capture Charlie’s attention only for a minute, I found myself smiling at the animation and silly plot.

You see, I missed all of the simple pleasures of childhood when my daughter was little. I was always working, cleaning (“multitasking”) or caring for Charlie, who had hundreds of seizures daily through Ryan’s second, third, and fourth years of life. TV was a tool, and yes, I admit, a babysitter. I never just sat down and watched an episode with my kids.

Until now.

When you have a child like Charlie, whose personality is frozen at age two, you have a lot more opportunities to take it all in. You are forced to go slower, to stop comparing, to take each day as it comes.

This life is not sad. His existence is not sad. HE is not sad. Quite the contrary. I feel sorry for people who do not get to experience the life-transforming joy that comes with having a child like Charlie.

This is more than a good thing. This is a miracle.

Infantile spasms robbed me of all joy as I knew it for many, many years. But what was sent in its place is a joy the depths of which only a mother of a child like Charlie can possibly understand. This is my reward.

This is my evidence of God.

He is my joy, my redemption, the source of a million chances to do something right with my life.

This is the joy I feel every morning at 4 AM when I change his soaking wet diaper, pajamas, and sheets, and he whines until I give him a toy. I find myself smiling and love-talking to him while I do this. I suffer this gladly, no matter how late I was up the night before or how many meetings I have the day ahead.

This is the joy I feel while staying up all night with him in the uncomfortable hospital bed, then entertaining him all day in that small room as he runs around, tethered to the wall, watching for seizures on the video EEG.

This is the joy I feel when I switch gears, reintegrate into a business meeting or school function for my daughter, perform exceptionally well, and mention none of the special challenges that I had that day, or that I face later that night.

This is the joy I feel when I am contacted by a parent of a child newly diagnosed with this horrendous condition, and somehow I know just what to say to them to make them feel like they can handle it, at least for one more day.

Joy has become my superpower.

This joy is walking me toward a profound peace. I’m not quite there yet, but I am close.

This is the peace I feel when I bring him to the children’s hospital and hear that there is little more to be done on their end to raise his level of function.

Please note the joy on my face before expressing your condolences to me, either in words or facial expressions, when you see me caring for Charlie out in the community. You will notice, I may seem tired, and perhaps a bit stressed, but never, ever unhappy. It is impossible to know Charlie and be unhappy. I am becoming the woman, and mother, I always wanted to be before I had Charlie. I am doing GREAT in every area that matters.

I am Charlie’s mother. I am SO lucky.

My apartment, the nudist colony

I said it before and I will say it again. Potty training is no fun. This issue is compounded by the fact that many of our older kids can also undress themselves, take off their diapers, and wreak havoc in our homes. This week, I have not been able to keep my Charlie’s clothes on…especially his PANTS! And when there’s a dirty diaper involved? Let’s just say I had to buy a case of disinfectant wipes this week!

I turned to other parents in various Facebook groups for advice and support, lamenting the fact that Charlie is turning our living room into his own personal clothing-optional resort. As usual, I received tons of great advice.

From the category, “Why didn’t I think of that?” These pajamas zip down the back to prevent unwanted removal. But, alas, buying special clothing is not in this single working mom’s budget. I went OLD SCHOOL. Something I did which worked like a charm is to cut the feet off of footed pajamas and put them on backwards. Now I am on a constant quest for footie jammies and other one-piece outfits, which I can never find when I am looking for them! Pretty soon the only readily available, affordable one-piece outfits will be discount Halloween costumes. If anyone can pull off a Chewbacca costume in June, it’s Charlie.

I tried the overalls-on-backwards trick recommended by one of his behavioral specialists and learned two things: 1) Charlie looks ridiculously adorable in overalls. 2) He figured out how to unsnap them within the first 20 seconds. Thanks a lot, team of expert occupational therapists, for teaching him this useful skill.

Do you have creative adaptive clothing ideas? Send in your pictures!

I am in potty training Hell

Potty training is no fun, but it’s even less fun to have an older child who is not ready for potty training, or requires the use of special techniques to learn.

Of course, many children with special needs will always be incontinent, through no fault of their own or their parents. Charlie might be one of them. Over the years, I have spoken to many parents of adult children with special needs who feel that their child could have developed the skills, but for whatever reason, never did. If I’ve learned one thing about potty training from these parents, it is this:

They wish they had tried.

If they did try,

they wish they had pushed harder to get help.

It would have improved quality of life for everyone times a million.

We are working on it every day. I tried all of the usual techniques that worked for my older daughter, but, without modifications, these approaches often do not work on a child with special needs. To see how some of these techniques are adapted for a kid like Charlie, this article on potty training advice from the UNC TEACCH Autism Program is a great read. Charlie receives behavioral therapy and has the autism diagnosis. Our behavioral people have a lot of great ideas which include using “reinforcers” such as the iPad or foods, and all of these strategies will require consistency and persistence.

Indeed, the standard approaches are just too pedestrian for a complicated man like Charlie. As you can see from the photo above, a potty chair makes a great office chair to sit on fully clothed and bark orders to his imaginary secretary with his imaginary phone.

I will admit, I am pretty discouraged.

Charlie doesn’t really communicate his needs in a functional way unless he is whipping his cup at me and saying, “DWINK?” so it’s really difficult to teach him to tell me when he needs to go, and I have to rely on his “tells.” So, for example, he will be at the windowsill where he likes to play with his toys, and will start doing what I like to call the slow motion James Brown move, crossing his legs and crouching. This is the point that I am told by behavioral experts that I am to implement an approximately 400-step plan (or at least it seems that way) that involves verbal cues, reinforcement, praise, shadow puppets, and interpretive dance. This process usually results in him sitting on the toilet with a goofy grin doing nothing, with me and at least one therapist kneeling on the tile floor, sweating and saying/singing ridiculous things to him to encourage him to go, finally deciding that we must have been mistaken and he DOESN’T have to go after all, pulling his pants up, and him throwing his “reinforcer” toy in the toilet…

…then pooping his pants in the living room five minutes later.

Alas, I’ll never know unless I try.

Meanwhile, back in the real world, Charlie needs diapers. Lots of them, and big ones, because he is six years old and big for his age. What kind of diapers should I buy now that Charlie has outgrown the biggest size of Pull-ups but the smaller adult size is too big and bulky for his (adorable and) ambulatory self? Will my insurance help me to pay for these diapers? Here is a great article on diapers for big kids.

As for obtaining and financing Charlie’s diapers, this has been a seemingly never-ending nightmare of red tape and trial and error for the last three years. I am lucky to live in PA and have Medical Assistance, a wonderful, magical secondary insurance that picks up a ton of what my private, employer-based insurance doesn’t cover, such as therapies and diapers. However, until recently, I was unlucky that I had to jump through crazy hoops every month just to use the insurance to get Charlie’s diapers. I would have to call and sort something out, send in a form, confirm a standing order, or otherwise keep the diaper supplier on my to do list for at least two weeks out of every month, and even then, the shipment was often delayed.

For all the trouble involved, I could have used that time to make handcrafted, artisanal diapers from recycled organic fibers and still would have had time leftover. Don’t you hate it when “services” that are supposed to make your life easier actually become your part-time job?

Once again, I turned to my Facebook family for advice. The other moms didn’t seem to be having so much trouble, and recommended that I switch diaper suppliers, so I did, last month. I have to say, the prospect of changing suppliers was intimidating. It was one of those “Devil you know” type of situations. I am SO GLAD I SWITCHED! After a few brief, initial consultations to get insurance sorted and assess our needs, they sent me two sample diapers to see what would work best, then they processed my order right away after I told them which diaper was best. Best of all, they let me do many transactions online, something very important to me because it’s really difficult to discuss diaper absorbancy when Charlie has the same ten seconds of an episode of the Dora the Explorer on his iPad on repeat, full blast volume in the background. I would like to give a shout out to J&B Medical Supply for making the process go smoothly! So, the moral of the story is, if the process seems to be too much of an ordeal, maybe it’s not you…it’s them…and switching suppliers can solve the problem!

Does your private insurance carrier cover diapers? If not, be sure to check this site for a list of potential sources for coverage in your state. What are some of your potty training tips?

Welcome to my world!

Welcome to my blog! I am Danielle Boyce, data engineer, software developer, researcher, and mom of four, including 14-year-old Charlie. Charlie had a severe form epilepsy called infantile spasms , and now has Lennox-Gastaut syndrome, intellectual and developmental disabilities, and autism. He has had two brain surgeries to collectively remove much of the right side of his brain. I also happen to have a Master’s in Public Health with a concentration in epidemiology and a Doctorate in Public Administration. I am on faculty at three academic institutions and consulted for many other organizations along the way. I also wrote a children’s book called Charlie’s Teacher, which is written from the perspective of a sibling of a child with special needs. I travel the country speaking to families and neurology professionals about the importance of including the patient and caregiver perspective in everything we do. My goal is to share high-quality resources and advice that I have collected from a variety of patient communities throughout my personal journey — all with a sense of humor.