Who was Tommy Boyce?

Tommy Boyce was my uncle, my father’s brother.  Here’s what I know about him:

He had “terrible epilepsy” with “seizures every day.”

He was “blind from birth,” something that was blamed on a “birth injury.”

He “was like a baby all his life.”

He died around age 8? 10? in the early 1950’s? from something related to epilepsy.

That’s all I know.

I found out about Tommy when I was about ten years old.  My brother and I were on the floor of my grandmother’s living room, sifting through a box of old photographs.  I came across a black-and-white photo of a beautiful boy I had never seen before.  There was something…different…about him, but I didn’t know how to put it into words.

“Who is this, Grandma?”

“Oh, that’s just a little boy I used to take care of.”

Grandma was a retired nurse, so that answer rang true.

When I got home, my brother, who already knew about Tommy, must have told my mother what I saw.  She sat me down and told me what little she knew about Tommy.

She described my Grandmother’s anguish, the wife of an alcoholic, who would not accept Tommy as his son.  She described her devotion to Tommy, the amount of work required to care for him.

She shared a few sweet stories of my father’s relationship with his brother.  He would ask their grandma for an extra cookie “for Tommy,” knowing Tommy didn’t eat cookies, and was saving the cookie for himself.

But that’s it.  It was never discussed after that, and I didn’t think much about Tommy until that night in the Johns Hopkins emergency room in February of 2011, when I was told infantile spasms, a “catastrophic” form of epilepsy, was suspected as the cause of my Charlie’s strange movements.

“Tommy!” I gasped, as I crumpled to the floor.

Tommy died in childhood, presumably as a result of his epilepsy, but I know very little about the circumstances.  I want to change that.  I want to shine a light on the stigma of epilepsy and the mystery of SUDEP.  I want to explore any possible genetics that tie Tommy’s epilepsy to Charlie’s.  I want to tell my grandmother’s story, as it is my story, and the story of so many women throughout the world.

Please join me in my multi-part series as I try to solve the mystery of Tommy’s death.

A beginner’s guide to the special education process

Are you new to the world of special education?  When it became apparent that Charlie would need special education, I went to the online support groups.  I remember feeling so overwhelmed and intimidated by the other moms who seemed to know so much more than I ever could.   I worried that I would never get up to speed.
If you feel like that, too, I want you to know that you are not alone.
This post is a roundup of everything I wish I had known at the beginning.
Get up to speed quickly by reading  10 Basic Steps in Special Education. The  Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation.  Wrightslaw is one of my favorite resources for special education law.
Did you know that there is an  Office of Special Education and Rehabilitative Services?  I didn’t, either, but knowing about it should come in handy someday!
I love these free  printables and other resources for children with special communication needs. Charlie uses a PECS book to communicate at his Easter Seals school and I am always amazed at how using the PECS system has improved his verbal speech!
Charlie LOVES his iPad. I picked up a few of these  22 Best Mobile Apps for kids with special needs. Charlie is also obsessed with  Rocket SpellerParker PenguinSuper Why! app and  Toca Doctor.  When you hear about kids using speech apps on the iPad, they are often referring to Proloquo2Go.  We are hoping that Charlie will start using this software soon.
Finally, oh how I wish I had known about A Day in Our Shoes a few years ago when the tumultuous IEP process began.  This site, and the corresponding Facebook support group, will rock your world with great resources!
I hope you feel a little better about setting out on your adventure in special education.  Please comment below to share your own favorite resources or ask questions!

Paying for it

When Charlie was first diagnosed with infantile spasms, I had private insurance through my employer but it was not nearly enough to cover copays for medications and therapies plus all of the other expenses such as wheelchairs and special beds that private insurance denied. I am above the income cutoff for Medicaid. What’s a working family with a really sick kid to do?
As it turns out, there is special waiver program, administered on a state-by-state basis, that can help! If you really want to drop some knowledge, ask your local Medicaid office about the Katie Beckett or Tax Equity and Fiscal Responsibility Act (TEFRA) provision. You can learn all about it here! For those of us who don’t have time to read a huge report, I love this web site for comprehensive information on  Medicaid waivers nationwide!
Sometimes, the medications that our children need are super expensive even after our private and public insurance options are exhausted. That’s where patient assistance programs come in. Find out if there is a patient assistance program for your child’s medication  here.

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!

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Welcome to my blog!  I am Danielle Boyce, the founder of Neurology Parent Professionals, a networking group of parent advocates.  I am a working mom of three, including a seven-year-old son, Charlie, who had a severe form epilepsy called infantile spasms , a condition that sometimes leads to Lennox-Gastaut Syndrome, and has the autism diagnosis.   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 have worked as a Senior Research Data Analyst at Johns Hopkins, Division of Pulmonary and Critical Care Medicine, for more than ten years. 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 caregiver perspective in absolutely every aspect of pediatric neurology.  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.   Follow me on Linkedin and Twitter

 

Do you have a resource or event that you would like me to share? Perhaps a question or concern that you need help solving? Please contact danielle@neurologyparent.org and your submission may appear in a future post!