Tag Archives: special needs

Are You Sick? Don’t Put My Kid in the Hospital.

I’m not really sure why I’m writing this. The people who actually need to read it either won’t…or will dismiss it immediately after they do.

But I’m going to say it anyway because your family, job and schedule are not more important than mine or anyone else’s. And maybe a Motrin Mom or a Motrin Dad will actually listen.

Don’t. Send. Your. Kid. To. School. Sick.

Colds are a pain. Symptoms can last for weeks. The reality is that everyone can’t stay home for the entire duration of all cold symptoms. I get that. Runny noses are inevitable in a classroom of young children. But if your kid is coughing and sneezing non-stop. Clearly feeling miserable. Running a fever. Don’t do it.

Keep them home.

Did you give your kid Motrin this morning to lower their fever JUST ENOUGH to squeak by the rules? Does your kid need Motrin PERIOD to get through this period of their communicable illness?

Then they should stay home.

Yesterday I saw an older kid start crying as she walked through the front doors of school because she didn’t feel well. She literally just got out of her parents’ car, and was already telling a teacher she was sick. Today I found out about a kid in my son’s special needs pre-school class whose mom is playing the Motrin game.

This was my son in September with the rhinovirus. Do you know what that is? It’s the common cold.

img_0812

Because of his seizure disorder, this particular cold, for reasons we don’t understand, triggered a status episode that led to 12 days in ICU. Illness in general, tends to trigger an increase in seizures, but we have no idea why this one was so incredibly bad.

Now I know I can’t protect him from all illnesses. No matter what I do, he is bound to get sick. It takes time to build an immune system and there is no way he is never going to catch something at school. We all get sick and we all spread sickness, even if we don’t mean to.

But when you know you are at the peak of contagion.

When you know your kid needs Motrin to pass the nurse’s test.

When you know your kid is not only coughing their lungs out, but also is too young to understand about covering their mouth and hygiene.

When you know they attend school with medically fragile children.

Oh you didn’t know that? Your kid probably does, even if you don’t know it. In fact, it doesn’t matter if they don’t actually have medically fragile schoolmates. Because we never know when even a typical kid is going to have an unexpected reaction to an otherwise ordinary illness.

So please do your part. And by the way, I used to teach. Assuming your child is verbal, they love to rat you out that they were sick that morning and mommy or daddy gave them medicine so they could still go to school. So your kid’s teacher is probably aware you are a jerk with no regard for others.

It’s not just about inconveniencing people. Maybe it was just a cold or cough, or 24-hour virus for you. That doesn’t mean it will be for the next person.

It might mean an ER visit.

An ICU admission.

A ventilator.

Understand that in the special needs/medically fragile community, it might mean death.

This is Malarie.

Photo and story shared with parents' permission.
Photo and story shared with parents’ permission.

She was 10 and had the same genetic disorder (tuberous sclerosis complex) as my son. She got sick last June and her parents took her to the ER for what they thought would be a short visit to get a handle on her illness. Within hours she developed  pneumonia, went into septic shock and passed away. It was completely unexpected and devastating.

What might be nothing for you, could be fatal for someone else. If you know you are sick and contagious, or that your kid is, do the right thing.

Stay home.

 

Advertisements

He is our superhero.

Day 8 of Guest Blogging for TSC Awareness

by guest blogger Melissa Courtright  (Caldwell, Idaho)

IMG_20141108_131428We have two children.  An older daughter Robin who is 11 (non TS), and Remy, who just turned three. He started having strange episodes at 4 months old that were later identified as seizures. He was officially diagnosed at 10 months old after having up to 14 seizures a day, and they did an MRI and found multiple tubers — over seven so far. They then did an echo and found he had three heart tumors, and has multiple ash leaf spots on his skin. He started having a speech regression at age 2 and we are working with speech therapy to help him. He also has some behavioral outbursts of frustration, maybe because his verbal communication is difficult, or his TS in general, or because, well, he’s just 3 LOL.

Remy is a loving sweet boy. He is empathetic to others’ feelings; he will cry at sad moments in movies, and cry along when others are sad. Yet he will still smack someone if they make him mad, but he will feel bad and give hugs. He is super smart, can do most complicated tasks and things at and above his age level. He plays most things safe, but is quite a fearless daredevil when it comes to physical activity. He is a ball of energetic energy, although his seizure meds make him easily tired, need breaks during the day and a take a long nap. He is a strong little man and will conquer his condition; he is our superhero.

super remy

Unconditional Love

 Day 3 of Blogging for TSC Awareness Month

by guest blogger Caroline Clyborne Ramirez  (Austin, Texas)

image4-2Since our son, Leif, first learned to talk, we’ve been drilling him on a basic call and response:

“Why do I love you?”

“Because I’m your son.”

We did this because we wanted him to know that he was loved, no matter what. He had our permission to be lost and a knucklehead while figuring himself out. He could worry about other problems, like having to eat vegetables and sharing. He did not need to worry about courting his parents’ love.

Then, my daughter was born. At four months, we learned that Colette had a diagnosis– tuberous sclerosis. She had about 20 benign brain tumors and epilepsy. We didn’t know if she would be smart or independent. Our blank slate of a baby came with no guarantees.

The grief and terror of the first couple of months were intense. I image7wanted to pull away. I wondered if I could ever love this child like I loved my son. What had I told him? “I love you because you’re my son.” I’d promised him. Could I sincerely offer that to my daughter? I felt like a fraud.

Life got busy. I stepped away from my career and into the life of a medical advocate. Colette had weekly PT, OT and eventually speech therapy. She had frequent overnight hospital stays to adjust medication any time we saw seizure activity. There were eye appointments every 3 months because her seizure control medication endangered her vision. We drove to Houston every image6three months to participate in a clinical study. The insurance company required weekly hounding to cover the basics. It was only the beginning, and already, the tasks made me a busy bee. My son loudly demonstrated his frustration with the redirection of my attention. I tried to be enough and constantly fell short. I worried that our sleepy, medicated baby was the most flexible member of the family. Her big blue eyes sparkled, and she never complained.

It’s an odd thing to be given an open-ended diagnosis. There was no adjusting to the news. The hope and despair pulled me up and brought me down like a roller coaster– tea leaf predictions from smiles and gas. I wanted to either grieve or enjoy my child. The image2“what ifs” of the future were easy to Google, from skin lesions on her face to LAM in her lungs. What if she can’t learn and spends the rest of her life in diapers? What if she develops behavioral issues and hits us? My one life experience as a substitute teacher in a Special Education had taught me that was NOT my population. I did not reach out to moms with older kids whose fates scared me. I clung, tooth and nail, to the shallow end of the pool and hoped we would never have to drown.

I was in constant fear that she would take a turn for the worst and we, as a family, would not be okay. Meanwhile, Colette was a bright-eyed and happy baby. She splashed the water in her bath and gnawed on her Sophie giraffe. It was a bizarre juxtaposition. Colette was the poster child of innocence. I was her strung out Mom. In tiny slivers of clarity, I dug my nose into her neck and smelled her yummy baby smell. Regretfully, I often saw TSC more than I saw my daughter.

That was when she had seizure control. When that ended at 10 months old, my nightmares developed a physical form. I took detailed notes of what movements we saw and sent them to the white coats in this army. Please, I said. Please protect Colette. Our precious baby continued to smile, but she almost never babbled.

Even though we were creeping toward the chasm that I’d feared would swallow our family, I felt calm and sad. I acknowledged more publicly what was happening, and wept big tears as I faced how little control we had over a disease that had no cure. Colette had good days and bad days, and so did I. I spent my time taking her to appointments, arguing with insurance, and trying to keep things normal for our family. I felt depleted and I felt despair.

I realized at some point that my nightmares were a very loud image3statement to both my kids. Colette’s imperfection had made Mommy sad. TSC was in her DNA. Colette, by simply being born, had brought TSC and all of its challenges into our home. Her sweet demeanor may have been lovely, but it was a consolation, a kindness that momentarily offset a mountain of pain. She had more to worry about than having to eat vegetables, and even more to worry about than experiencing seizures. She had caused her family to suffer by means of existing. Something was terribly wrong, and that something was within me.

There was a woman on Facebook with a daughter who was cognitively two and physically 25. She kept posting proud mommy posts, and she baffled me with her acceptance of her child. I didn’t understand her, but something in me was shifting. I realized that a 2-year-old is lovable and delightful. My expectations of her child– that her child act 25– imposed onto her child’s existence something presumably painful that might not be real.

As I thought about her child, I was flooded with memories of my beloved Grandpa. Grandpa had Parkinson’s. He was sweet. He threw a purple foam ball back and forth with me. I didn’t “know better” that he’d lost something. I just loved him, and he loved me. Maybe I didn’t need the conditions I had for loving my child. Maybe I could just love my child.

As my eyes opened wider, I became aware also of how my vanity bled into my relationship with my son. He was so smart. He was so handsome. My pride appreciated pieces of him he never chose for himself. It was an easy mistake to make. In a family of nerds, his brains made him feel like our boy. However, he was getting extra credit because of his luck– because I was proud of his gifts.

How unfair of me. My job was to help him develop his character, and my preference for his smarts added conditions to my love and modified my expectations of him. His sister aside, I saw a rot forming in my parenting. Colette’s condition challenged my vanity and made me see both kids more clearly.

Humbly, as a flawed person mid-stream, I am challenging myself to change what I expect of both my kids. I am going to love them both because they’re my kids. I am not going to give Leif extra credit for being smart, and I am not going to turn Colette’s existence into a burden anymore. I’m just going to support her health as she needs and enjoy her in the present, stripped of all the disparaging “shoulds” that diminish her humanity. If I need to, I’ll think of Grandpa and find a way to throw a ball to my daughter. I’ll appreciate the day she can throw it back, but I won’t love her more for it.

I’ll keep love simple. That way, my kids can stop worrying about the quality of my love and start focusing on the road in front of them. When I whisper in my daughter’s ear that I love her, I now really know the answer. I love her because she’s my daughter– no matter what.

Brain surgery is coming this month. Finally, we’re ready.

image1

Tuberous Sclerosis Complex Awareness Month – Joy

Third Annual Blogging for TSC Awareness Month  Day 1

by guest blogger Ryan Kennedy  (Woodward, Iowa)

Joy

Who knew what this journey had in store?

I was going to be a father again.

My wife held a child within.image1

A healthy birth, everything looks great!

Joy!

Who saw this coming?

A heart murmur

A routine doctor’s visit

A heart tumor

Hope.

This can’t really be TSC. Can it?

More doctorsimage3

Neuro, nephro, cardio, genetics

My son has TSC.

Pain.

How bad will it be?

Infantile spasms

Sleepless nights

My son has autism.

Grief.

What does this mean?

He walks.

He laughs.

He smiles.

He has joy.

He gives me joy.

image2

Pesky Questionnaire Problems for Special Needs

Connor has aged out of early intervention and will go into the school system where he can attend a special needs pre-school. You know what that means! Paperwork! Like this transition isn’t hard enough. Not only is it less time with my baby, but do you know how early schools start?! I’m gonna let you in on a little secret. Connor is a great sleeper. When he wakes up during the night, he typically entertains himself until he falls back to sleep. For this reason I have been able to consistently sleep until 8 every morning (arising even then only because of the necessity of meds) while your toddlers were screaming for whiny Caillou by 6:30. I can’t believe I have to give this up.

At any rate, I’m sitting here filling out ratings scales on my kid. But sometimes

0 for not true/Never/Seldom

1 for just a little true/Occasionally

2 for pretty much true/often/quite a bit

3 for very much true/very often/very frequently

just isn’t sufficient to answer the question. So I will instead provide short answer responses to the questions that I think need further explanation.

Is odd or unusual. Well ya’ll just jumped right in there didn’t you? What does that mean? Define odd or unusual. My son is not the typical three-year-old thanks to tuberous sclerosis complex, epilepsy and ASD, but odd or unusual? He loves trucks, books and puzzles. Not odd or unusual. Has been able to listen to All About that Bass more than 1,087 times without getting sick of it or trying to throw himself out of the car window. Very odd and unusual.

****

Gets invited to parties or playdates. He’s three. This question is clearly about me and my social skills. Three-year-old social lives  are very dependent on whether mommy can put up a front that she’s sane in front of other people. And whether my friends provide alcoholic beverages at kiddie functions.

****

Acts before thinking. He’s three. I’m 34 and still trying to master this. I almost punched a girl in Kroger just because she mentioned attending an Ariana Grande concert while blocking my path to the Gerber Graduates.

*****

Is perfect in every way. Ooooh, you’re testing me again!

*****

Behaves like an angel. So basically this questionnaire is fodder to talk shit about me in the teacher’s lounge.

*****

Has trouble keeping friends. Well if his toddler buddies would stop taking HIS toys it would really bridge a gap. Or if he’d stop taking theirs. Or if the kid in the therapy waiting room wasn’t looking at HIS fish in HIS tank he wouldn’t have needed to push his head away.

*****

Is happy for others when something good happens to them. Well he doesn’t understand abstract ideas, only what he can see in front of his face. I’m sure if he understood graduations and promotions he’d be delighted for the recipients, but as of now, he’d much rather see you fall down or sneeze. But now that you mention it, he was pretty damn indifferent when I crushed his Daddy at Trivia Crack.

 

The scary thing is that I think Connor fares better on this scale than I do.

I’ve been informed that the way I eat candy bars is odd and unusual. (In sections, I eat off the surrounding chocolate and then eat the center).

Most of the stuff I get invited to these days is kid-related.

I probably should have thought to put a mug under the Keurig before turning it on.

The friends have been fading away. As much my fault as theirs. It’s not something I want, I just don’t have the energy to force myself out sometimes.. Have I been telling you we should meet for a drink? I actually mean it, I just need a kick in the butt. Relationships change. Sometimes when the gulf opens, I don’t know how to cross it.

Sometimes I’m happy for others. Other times I want you to admit you gave your kid a banana that wasn’t really organic. Or that your child didn’t recite Pi to the 1,000th place at 18 months.

But I am a perfect angel. So I guess that’s something.

IMG_3778

 

 

 

Tardy thoughts on the Superbowl, dadvertising, and that stupid fire dress.

Let’s start with the game. It gets my standard review. Didn’t care. Didn’t watch it. Well, except for that fight at the end. That was kind of entertaining.  I hate football. YES! I SAID IT! I live in the southeast where college football is king and I neither care about SEC football (I mean, I want the Dawgs to win, I just don’t need to watch it happen) nor do I care about the NFL.

As for the half time show — thank you, Missy Elliott. It should have been your half time show. Not that I hate Katy Perry or anything, but Cinna was right there on stage with you, and that was the best fire dress you could come up with?!

I always watch for the commercials, specifically the humorous ones, although it seems like those are fewer every year. Or maybe I just thought they were funny back when I bothered to go to Superbowl parties and started drinking at noon. Of course the humorous ones were always mixed in there with the stereotypical scantily clad, partying women selling booze.

This year was an interesting departure. Not a lot of naked chicks, but a lot of kids and dad commercials. It’s funny. If that change had been made just a few years ago, I would have thought, great, wonderful! About time. And then I would have gone on with my life. But watching the commercials, even as a mom was a strange experience.

Let’s start with THAT Nationwide commercial. I’ll give you props, Nationwide. You got the nation’s attention. You collectively sucked the breath out of every room that had a TV tuned to the game. Adorable kid, charming and quirky depictions of childhood imagination; we fell in love with this little boy in 15 seconds. Then you killed him. We were treated to visuals of overflowing bathtubs, cabinets opened to containers of poison, and a flat screen television smashed on the floor. I conducted a very unscientific poll and have gathered that 63 percent of viewers responded with What the f—! 32 percent responded with mouths gaping open. And the remaining 5 percent were lucky enough to be in the bathroom.

2548831800000578-2937129-Another_meme_Mr_Smith_s_photo_sparked_an_array_of_Nationwide_the-a-10_1422920774162

If it saves even one kid, it was worth it. But as a parent that is faced with  the reality of childhood mortality every day, I sure didn’t like it or want to see it when I just wanted laugh at idiots doing dumb crap to get Miller Lite or Doritos. Connor does not have any life threatening complications, but seizures are always dangerous and unpredictable. And I know so many people via my involvement in cannabis legislation that are dealing with far more dire situations than I am. The TSC community has lost two teenagers recently, and I’m going to be selfish and say I didn’t want to think about that during the stupid Super Bowl.

That Dove ad with a sequence of young children hitting milestones and calling out to dad. Dad. Daaad! Sweet commercial. I was a little confused by the Cats in the Cradle Nissan ad. Seemed depressing. Here, buy a Nissan and drive away from your family! Not everyone interpreted it that way, but if you are familiar with the song, it was kind of hard to view the commercial in an uplifting manner. But at least dad was there to pick up his teen son at the end. Toyota depicted a dad raising his daughter and tearfully dropping her off at the end to her military deployment.

This shift in advertising should have been a welcome change to me, but it sort of wasn’t. Don’t get me wrong. I’m no fan of naked chicks spraying themselves with Coors Light. I’m not saying this a bad change. I just realized how different the experience of these commercials can be for some people in the special needs community, and especially for those who have lost or are facing losing a child.

Watching kids hit milestones and do things they can’t do yet, or may never do was extraordinarily painful for a LOT of parents, as I realized quickly from my Facebook feed. I know I felt a little funny, and I wasn’t even the target of the advertising. The Dove commercial with kids calling out for Dad…as I’m desperately waiting for Connor to say his first word made me stop and pause in the kitchen as I poured my drink. I read more than one thread online of parents that had clearly been taken out of the moment of enjoyment and festiveness by these ads. To be clear, no one was critical of the ads, it was just interesting to realize how much my own perspective has changed in the last three years.

As for me, next year I’ll probably watch Netflix upstairs, perhaps Nationwide Presents: The Never Ending Story 4: More About the Horse that Drowned in the First One. I’ll watch the funny commercials online later.

 

Helpful contact information for healthcare premium assistance programs.

Due to Connor’s diagnosis of tuberous sclerosis complex, he qualified for Katie Beckett Medicaid (known as TEFRA in some states). He is eligible for that program based solely on his medical condition. Parent finances are not a consideration. It acts as a secondary insurance, picking up a lot of what isn’t covered by our primary insurance. It is the reason we are able to get him so much therapy. As a result of qualifying for Medicaid, he also qualifies for the Health Insurance Premium Payment Program (HIPP). It assists with the monthly cost of the premium of our private insurance we get through my husband’s employer by reimbursing us on a monthly basis. Basically, it’s cheaper for the state to make sure we are able to keep our private insurance, rather than lose it and resort to full Medicaid.

We had recently been Googling to try and figure out whether a couple other states had similar programs to HIPP and were struggling to find the information. My husband was surprised to find a list of all states with such programs in his recent benefits enrollment package. I thought I’d post the contact information in case others were not aware of the possibility of applying for this program. We were lucky that Connor’s early intervention coordinator is really good about letting us know about various programs, but I meet a lot of people that have no idea. Hope this is helpful to other special needs families.

IMG_3237

IMG_3238

IMG_3239