Tag Archives: special needs

The Side Effects of Medical Cannabis

March 9, 2014 Rebecca Gaunt 15 Comments

I’ve posted before about Hunter, an eight-year-old boy from Georgia, whose family relocated to Colorado several months ago to try and treat his severe epilepsy with cannabis oil. Previously 12 FDA-approved meds, the ketogenic diet and a surgically-implanted VNS had failed to make him seizure free. He was not a candidate for brain surgery. Some of his meds made him sleep constantly or scream. Here is an update.

This non-psychoactive oil has made an incredible difference in Hunter’s quality of life. According to Mom, “His bad seizures (myclonic clusters) would happen almost daily before and last 5-10 minutes. NOW, he is averaging one a week and they are under 2-3 minutes. In the month of February he has had 4 so far. This is HUGE! His quick seizures used to last upwards of 30 seconds and happen 10-20 times a day. After a month or so we were still seeing them every day and several times a day but they were literally seconds and half the time we couldn’t tell if he was actually having a seizure. Now, after 3 months, we are hardly seeing ANY!”

But in fairness, we must address the side effects of this medication. Sure, it might help kids with terrible seizure disorders that are damaging their brains and ability to function and learn, but surely there are SIDE EFFECTS? Well, you’re right. There are. Here are the side effects Hunter is experiencing.

1. Increased eye contact and the ability to maintain eye contact.

2. He no longer needs Miralax and daily suppositories to go to the bathroom.

3. He is relaxed. His fists no longer remain in a clenched position with his nails digging into his palm, making his hands bleed.

4. After eight years of only being able to sleep on his back, he can now roll to his side and sleep in a new position.

5. He now rides the school bus since Mom no longer worries about him having a bad seizure on the bus.

6. There have been no calls from the school for EMS.

But I guess a few side effects are the price a parent must pay for giving their child quality of life. That and leaving your entire life behind in another state.

Update 3/10/14: The Klepingers were on CNN today. Check it out here.

Parenting, Tuberous Sclerosis

My Take on What Not to Say to a Special Needs Parent

January 9, 2014 Rebecca Gaunt 3 Comments

I’ve read with some interest several circulating posts regarding “Things Not to Say to a Special Needs Parent.” I’ve never reposted the links though. It’s not that there is anything wrong with these posts, and there is nothing wrong with the fact that others repost them, but I just find myself too much able to see both sides. There might be one or two I agree with, but there are always a few that I think are genuinely well-meaning. The people who write them do it from the heart because that’s how they feel. Others repost and comment that they totally agree because they have similar experiences. But sometimes I think these posts unintentionally leave people on the other side of the fence feeling like they can’t say anything for fear of offending us.

Some comments are insanely obvious in their offensiveness, and I understand their inclusion on these lists. In fact, it is sad that someone even has to point out that you shouldn’t say these things:

1. What’s wrong with him/her? (Many parents don’t mind being asked about disabilities. Just do it politely and out of earshot of the child.)

2. That kid needs a good-old fashioned spanking. (Or any other disciplinary type of advice).

3. Were you taking medication while you were pregnant? (Really? Was YOUR mom taking medication while she was pregnant with you?)

But so many of the things on these lists I believe are coming from really well-intentioned people. Some of these things came from me at some point. To be clear, I’m not criticizing you if these comments upset you…I DO get it. And I’m also still fairly early in the game. Check back in a few years. Maybe I’ll feel differently.

1. I don’t know how you do it! or I couldn’t do what you do!

This easily would have come out of my mouth two years ago. It would have meant that I’m genuinely impressed by your strength. Now people say it to me. But the truth is, you can do it because you have to. If I had known before I ever became pregnant that Connor would have health issues, I would not have had kids at all. But life doesn’t work that way. If I can do it, you can do it. You’ve just been lucky enough not to find it out. So I choose to take it as a compliment. That’s me. But I do understand why it bothers some parents.

2. Have you tried…

For me, this is all about tone and presentation. This is not in and of itself offensive to me. I do not mind suggestions or telling me something you read or saw worked. I don’t mind when friends and family tell me that they know someone who recommended this supplement, or that they read an article that mentioned this type of therapy. You are simply giving me an option to look into. That is cool. What is not cool, is presenting it like that’s what I should have been doing all along, or that something is wrong with me because I’m not doing X, Y or Z. In my case, I will say the obnoxious comments like this have only come from online people I didn’t know personally. When I mention my son’s intractable epilepsy, don’t tell me I SHOULD be giving him fill in the blank with the latest hot supplement.

3. He seems fine to me!

I know my kid is delayed. But not having any other kids to compare him to I’m not always totally clear on where he stands on every little nuance. I don’t mind people commenting about the areas in which he is relatively on schedule or performing well. That being said, it’s going to come off very insincere if you say it when it’s a situation where it’s clearly not the case.

There is really just one thing I’ve found that I hate…like, beyond despise.

It’s the God stuff. God doesn’t give you more than you can handle. Or God gives special children to special parents. Or God has a plan.

I have never been a particularly religious person, but I’m not an atheist. I do like to think there is something after we die. I hope there is. But the thought that these paths are chosen and that my child and I were selected to deal with this makes me mad. I can deal with free will and the thought that things just happen because they happen and it’s up to us find our own path in life. The thought that it was part of “God’s plan” for my child, or any child, to be born with an incurable genetic disorder does not bring me any sort of peace. It infuriates me. I don’t want God to have a plan that included this because then that means the plan could have been altered so that he had been born without it. That doesn’t exactly make me fall on my knees.

But here is the tricky part. Some special needs parents do believe this and use these phrases themselves. What ticks me off, brings them comfort.

You won’t always get it right. Circumstances and moods change. Connor spent his first five weeks in NICU. His seizures started the day he was born. We met with countless doctors, nurses, therapists, chaplains and volunteers that would stop by his bed. A discussion of his medical condition would inevitably always close with, “Congratulations!” Congratulations on what? That my kid has some disorder I’ve never heard of and they can’t control his seizures? That he probably needs brain surgery? That I have no idea what is going to happen to him and I’m so scared I can barely breathe? But of course they said congratulations. I just had the most adorable, awesome kid ever born on the face of the Earth. I just wasn’t in a place to see it right then.

At the end of the day, it is really hard to know the right thing to say. All you can really do is have good intentions and be supportive the best you know how. We will let the ones that aren’t fade from our lives.

Parenting, Tuberous Sclerosis

Medical maladies and eating strategies for the picky eater that will eat anything — sort of.

Aside December 13, 2013 Rebecca Gaunt 2 Comments

I had a physical last week. When I got home, I announced that I only had six months to live. My parents laughed and rolled their eyes, a natural reaction from anyone that has known me for 33 years (they were there to watch Connor since Chris was working upstairs). Chris told me to stop it. He never enjoys my macabre sense of humor. I’m not allowed to play games like “What If?” or “Would You Rather?” He doesn’t like hypotheticals, where as I thrive on knowing things like, If I died, would you keep the cats or give them to my mom? Or, would you rather be married to a donkey or smell like a port-a-potty no matter how many showers you take.

My doctor confirmed that she thinks the headaches I’ve been having are migraines — mild as far as migraines go — but still migraines.

I also took Connor to a dermatologist for a wart he’s had on his foot for some time now. One $50 co-pay and $4 for parking later, off I go to Walgreens for standard over-the-counter Compound W. Sigh. I did like the dermatologist, though. He was an old guy that put out the vibe of an old-timey pharmacist. AND he was familiar with TSC! Even though we weren’t there for anything TSC related, he saw his history and asked questions about how Connor was affected, and he was familiar with various organ involvement. It sounded like he had even been the one to diagnose people based on facial angiofibromas, who were otherwise unaware of their condition. It’s always nice to come across a medical professional that actually knows what TSC is, and that he knew about the effects beyond the dermatological made me quite happy.

In other medical news, CHOA is once again trying to give me what I now know is a migraine. We finally got the call to schedule Connor’s first visit to the keto clinic so we can consult about the modified Atkins diet for seizure control. Want to guess when the appointment is? March 18. March. 18. Lots of four letter words when I hung up. I’m still not really clear on how this is going to go. She told me the nutritionist would call me. Possibly to start the diet before that? I couldn’t get a real clear answer, though I expressed my dismay at waiting three months. She also couldn’t tell me how soon the nutritionist would call. So I think we start the diet via phone consult, which is better than waiting three months, but I sure would prefer meeting with the expert before making such a drastic change to Connor’s diet. But like I said, I’m not even sure if that’s the plan yet.

I must also accept the blame for making Connor sick this week. Connor came down with his first normal, run-of-of-the-mill illness. We’ve had seizures, brain surgery and weeks in the hospital…but not one bout of ordinary childhood illness. He woke up late Wednesday night coughing and ran a low-grade fever most of Thursday. No fever this morning, but still coughing occasionally. Fantastically, though fevers typically lower the seizure threshold, I saw no seizures during the course of battling his temperature with Tylenol and Motrin. But why my fault he’s sick? I recently blogged about his superior health and just this week, I thought, man, we might just make it to his second birthday with no viruses! My bad, buddy. I know better. I’ve been sleeping on the floor next to his crib the last couple nights because it makes me feel better mentally — my hips hate me though. Chris would have done it, but Connor doesn’t tolerate snoring.

So it has been a lot of lying around and sleeping, along with more PBS than usual. If I see this Mouse King episode of Super Why one more time, I will scream.

Progress in the eating arena:

On the bright side, it appears we are making progress in the eating arena. His speech therapist has been providing tools to work on his sensory issues with his mouth. He does not appear to have any other sensory issues whatsoever, but try getting him to use a sippy cup or eat food with no degree of pureeing has been about as fun as…as…as trying to make an appointment for anything at CHOA. To eat non-pureed food, it had to be cut extraordinarily small and he would eat in very limited quantities. But this week has been far more successful at getting him to drink from this cut-out cup (which allows me to see how much he’s getting, as well as prevent it from hitting his face making him buck away).

He also ate this whole serving of mac-n-cheese. Just a couple weeks ago, I had to cut the pasta up and mix bites with pureed food so he wouldn’t just store it in his cheeks like a chipmunk. But he demolished the whole thing with no mixing or cutting this week.

He also did well with this, though he didn’t finish due to stubborness. The bites he did take, he swallowed, while before this one was almost inedible because he just built a fortress of peas and meat in his mouth.

These are his other fancy tools:

The blue and orange thingy can hook to his clothes or seat and its purpose is to prevent him from throwing his utensils. Unfortunately, they slide out anyway, so that’s not really helping. The purple and green spoon is bendable to work on getting him to feed himself. Angling it should aid in helping him put the food in his mouth. This is all theoretical as he shows little interest in anything other than being fed or throwing spoons. Or removing food from the spoon with his hand. The purple tool is a textured spoon to desensitize his mouth. He hated it at first, but now it doesn’t phase him. That’s a Nuk brush on the end. He hates that bad boy. It is also to desensitize his mouth. Not just for eating food, but also for rubbing it around in there. The therapist added the rubber grip so he could hold it himself, I suppose not realizing that his complete and utter hatred for it means that if you actually put it in his hand, it will immediately be on the other side of the room.

Now if you’ll excuse me, he just fell asleep and I’m going to check his temperature. He’s made it pretty clear that if I stick that thing in his ear one more time, I get a Nuk brush in my eye, so cross your fingers…

By the way, my blog is nominated for a couple of awards over at WEGO Health. Thanks to those who have endorsed me already! It’s not too late 🙂 to do it here.

“Let me guess, you have a headache again?” (unrulybodies.wordpress.com)

Parenting, Tuberous Sclerosis

A mommy fail and cognitive growth

November 8, 2013 Rebecca Gaunt 6 Comments

I was on such a high yesterday about Connor climbing the stairs that I could have been the mayor of Toronto. Of course, this morning brought the sobering (though still awesome) reality of this development. I thought I had secured him this morning when I ran upstairs to get something. I stayed for a couple minutes talking to Chris about his progress painting the master bedroom, then opened the bedroom door only to find a toddler charging at me from the top of the stairs. It appears I failed to secure him properly and he followed me up the steps. Bad mommy.

Problem is that we actually tried installing a gate at the top of the steps but it didn’t really go so well as it is wedged between two bannisters and no wall. Same at the bottom. The bannisters just sort of start to push outwards as the door is tightened and doesn’t seem particularly safe, so we will just have to be sure to secure him away from the stairs all together.

But in all my excitement about his motor development, I forgot to talk about his cognitive development. I think I did mention how excited I was when I asked him if he wanted to read his favorite book and he crawled into the play room straight to it. But I have also seen an unbelievable change in his ability to manipulate apps on the iPad. We have several that we downloaded a long time ago at the suggestion of his therapists to teach him cause and effect, but he really just banged on the screen as we tried to help him manipulate them.

He did best with this one, Baby Piano, as it actually does respond well to random banging. In the last couple weeks he has had a renewed interest in it with more careful tapping of the keys.

He also figured out how to manipulate Peekaboo Barn independently. It’s pretty basic, just tap the barn door to open it and a new animal appears each time making sounds. But I could see that he was actually waiting to see what animal would appear inside instead of just hitting the screen.

A more recent download is the Crayola App which allows him to use his finger to color. He just has to touch it to make the colors appear, and I only helped him as far as changing colors for him. And he seemed to notice that I was changing the colors.

But this was the one that blew my mind. During the IFSP meeting this week, his speech therapist put Itsy Bitsy Spider on for him. We hadn’t used that one with him in a long time as it’s slightly more involved with moving characters and multiple places to tap to make things happen. I’d never seen him use it very productively. We either guided his hand or he banged randomly. Without even having seen it for weeks and weeks, he began to carefully watch the spider and tap it at opportune times to make it interact. I could barely concentrate on the meeting I was so shocked.

I had a really vivid dream last night that he started talking. Maybe it was a premonition 🙂

Parenting, Tuberous Sclerosis

Five months of great progress!

November 3, 2013 Rebecca Gaunt 2 Comments

Connor’s first year was such slow development that I still can’t wrap my head around the last few months. I mean I vividly remember obsessing over him just lifting his head. It took forever. He sat somewhat independently around my birthday in October of 2012, and I thought here we go! But it was months before he could sustain it comfortably on his own. We put our old house on the market at the beginning of June this year. I vividly remember that his crib was still in the raised position as there was no worry that he would fall out. He could sit well, but couldn’t get into sitting on his own. It all started when he finally chose to roll from back to front. He went the other way on time, but refused to CHOOSE tummy time, leaving himself immobile. Since June 1, he

mastered pulling up to sit

become mobile through rolling and scooting

added consonants to his babbling

learned to crawl

pulled to stand

started cruising furniture

has shown recognition of more words

has become very (too) opinionated

and initiated his first game of peekaboo

Exponential progress.

His physical therapist almost cried when she saw him cruise. She had been away for a couple weeks as her granddaughter was having cancer surgery at CHOP for ganglioneuroblastoma. Ain’t life grand for our kids. Don’t worry. I’m aborting my angry Where’s God diatribe. (Side note: She said CHOP is the best for this surgery and they went in thinking they would be able to get 50%. They think they got over 90%!)

Cover of "Click, Clack, Moo: Cows That Ty... — Cover of Click, Clack, Moo: Cows That Type

He shows definite favorites in books — his two favorites are Click Clack Moo and Hand Hand Fingers Thumb. If I start reading from them, he comes crawling over. The other day I asked him if he wanted to read Click Clack Moo and he crawled out of the family room into the playroom to it and looked up at me expectantly (after a brief scrunched face short cry because we startled him with our enthusiasm).

I’ve given up trying to get the detailed results about his MRI from Boston. We got the standard report of no growth, but we were supposed to finally get details on number of tubers and locations so we can target potential deficits etc. But as no one ever gets back to me when I leave messages regarding that particular report, I guess we have to wait until we go for our next TSC study visit in February or March when we will schedule a visit at the clinic. Not very happy about that.

Connor still refuses to feed himself, and when we give him finger foods, he just destroys them. We’ve tried cracker type food items, but he crushes them, so his physical therapist suggested beef jerky. It’s easy for him to hold and he might like the taste. And wouldn’t you know, he sucked on that Slim Jim a couple times and bit it into pieces. He only swallowed one piece, and that was by accident, but still progress. Slim. Jims. If you had told me I would be feeding my toddler Slim Jims…

He also still won’t get off the bottle, which we think is another one of his stubborn things, kind of like refusing to roll over. His speech therapist has been pushing a straw with a squeeze bottle, since sippy cups get swatted across the room. He actually let me put the straw in his mouth without fighting me yesterday for the first time. Maybe we’ll get rid of these bottles some day after all.

I learned a valuable parenting lesson last week when we went to the North Georgia mountains with my parents. While we have had to deal with crazy TSC stuff, as far as the normal baby health issues are concerned, Connor has never really had any issues. He’s barely even had a cold. Well, last weekend we had a major bout of constipation. I never understood what the big deal was. They go eventually right? Give them some prune juice or whatever. My bad. Sorry about the flippant attitude. Almost two days of fussing and irritability. He went an entire day with no food or drink whatsoever. It wasn’t until the next morning when he willingly took his meds that I had the brilliant idea to give him milk, water and juice with the oral syringe. My mom shook her head at one point and said, “When people ask what we did this weekend I can tell them we waited for Connor to poop.” And so I deemed the weekend PoopWatch 2013. I’ll spare you further details, and only say that a couple days later I was looking for a cork.

Toys are for chumps.

Let me out! I promise not to try and make a break for the woods again!

New cabinets to explore.

Our trip to the pumpkin patch a couple weeks ago:

Please click on the Top Mommy Blogs icon to the right so I can move back up in the rankings!

Parenting, Things to Do Around Atlanta, Tuberous Sclerosis

Another milestone! And costume problems…

October 23, 2013 Rebecca Gaunt 2 Comments

Last night Connor cruised the furniture for the first time! He took three side steps to move down the couch, and a little later, got up and did five in a row. I’m itching for him to walk! My back needs it for one. All his doctors concur that he’s right around the 27-pound mark, but apparently they all buy same defective brand of scale because I can tell you he weighs 80. There will be so many more places that we can go to fill our days. I mean, we have fun at the zoo and Tanglewood Farms, but it’s a bit of a work out. A few more months and I’ll be much more excited to receive invites to bouncy house parties because I won’t find myself facedown suffocating in the corner of a castle, being trampled by toddlers. We’ll probably go broke from me buying season passes to everything in a 50-mile radius.

Last week, Chris had to go to NYC for the day for a business meeting. He happened to stumble upon the taping of the Today Show — the last hour with Kathie and Hoda. They pre-tape Friday’s show on Thursday, and that is the episode you can see him wandering around the back, texting me to ask if he’s on TV and poking his head in to see what’s going on. It’s pretty funny. Here are some stills (yellow tie and briefcase strap criss-crossed):

We had a busy weekend. Saturday, Chris and I made the day trip to Birmingham for the TS Alliance regional conference. I took this picture at the Alabama welcome center because it gave me the warm fuzzies.

We got to hear about the latest in clinical studies, surgical techniques and dealing with schools and IEPs — having been on the other side of IEPs as a regular ed teacher, I dread the possibility Connor could need an IEP. Let’s say I’m just a little jaded in that area, having seen first hand what happens when the law requires schools to provide a “free and appropriate education” but doesn’t provide funding or support. Fingers crossed he won’t, but we have to be prepared for the possibilities. The reality is he will most likely start school with one, given his delays. It’s unlikely by pre-k that I won’t feel he needs one, but I can still hope that won’t always be the case. Only time will tell.

My parents got to spend the whole day with Connor from waking up until almost bed time. Everyone survived so I’m booking a trip to the Caribbean.

On Sunday, we met up with the Cruz’s and the Weathersby’s for Boo at the Zoo. We had two pirates, a monkey and a cow. The cow was SUPPOSED to be Cookie Monster, but the manufacturer and I have a serious difference of opinion on what constitutes a 2T. We had to make a last minute dash to Target on the way for a new costume, where we very nearly added a third pirate to our crew.

I wasn’t really sure how the zoo would go with Connor, being that he doesn’t walk yet, and while he loves animals, I wasn’t confident that the distance between him and the zoo animals would intrigue him. For the most part I was right. But the one place I thought he’d be least interested was one of the best. He loved the aviary because every few minutes the birds would all swoop the enclosure together, which he found hilarious as they whirred past his head. He perked up again at the petting zoo, but getting him to look off into the distance to spot the gorillas and giraffes just wasn’t happening.

Zoo Atlanta also put up a tent with a costumed dj, furry dancing animals and loud music. Babies first rave.

This is what happens when you want a picture of all four boys together:

Where's David? Catch him! — Where’s David? Catch him!

Look at you? Ain't nobody got for that. — Look at you? Ain’t nobody got time for that.

Next time I'll bring duct tape. — Next time I’ll bring duct tape.

Afterward we picked up food and went back to eat at the Cruz’s where Connor continued his doggy guilt trip on us by expressing his extreme delight over their dog Bacchus. And it was super adorable when David, who is one day older and fully mobile, got down on his knees to crawl along with Connor.

I am extending the deadline to enter the giveaway for the four FREE online speech therapy sessions. Enter here. There is no obligation beyond the four free sessions.

IEP’s – What do you need to know? (calebsdoggy.wordpress.com)

Parenting, Tuberous Sclerosis

Relieved after talking to the neurologist.

October 11, 2013 Rebecca Gaunt 6 Comments

Feeling much better this morning after an appointment with Connor’s neurologist. We were dismayed to hear about changes on the ERG, but I really freaked out yesterday when his medical assistant mentioned in an e-mail that he wanted to discuss the ketogenic diet. The ketogenic diet is no joke–read here–it involves hospitalization to start it, measuring everything he eats and it’s more extreme than Atkins. I have never wanted to do the keto diet and have always hoped it would never even be a consideration. Don’t get me wrong, it’s not off the table and I understand why people do it, and some have great success, but it just seems like a nightmare to me. I hope to find seizure control another way.

I was really freaked thinking we were going to be told Connor MUST come off the vigabatrin immediately and that the keto diet would be on the immediate horizon. Thankfully, not the case. While a change on the ERG is reason for concern and close monitoring, our doctor said to also take it with a grain of salt. Many parts of the country, people aren’t even doing these because it’s somewhat unreliable at this age. It can’t tell you how much vision is being affected, if at all, only that the retina isn’t responding quite the same way with one of the wavelengths or something–honestly I don’t understand it well enough to explain it. Sometimes, later tests go back to normal and it was just an anomaly, and yes, sometimes the peripheral vision is affected, but the positives of the meds outweigh the negatives. In his experience, most of the time a kid has gone off due to changes on the ERG, they ended up back on it because it was simply the most effective med for them. Unfortunately, keeping the seizures at bay must take precedence over perfect vision. If it was an issue of blindness, I’d be much for freaked out, but hopefully, if he does suffer any loss to peripheral vision, he will learn to compensate.

We do have to decide if we go back for another ERG in a month, or wait the standard three months. He didn’t seem to think it was worth the sedation to go back in a month, though. Obviously, we could have to face decisions over again if we continue to see changes, but hopefully that won’t be the case.

As far as the keto diet goes, he brought that up more as a possibility, and he felt the modified Atkins diet was equally good (and less insane–my words, not his). We will revisit that in a few weeks after we see what happens with the increases in Onfi. We are also finally weaning Keppra- the drug that has been the unchanging constant through all this. We’re not sure it’s really doing anything, so we’ll monitor and see what happens.

He also said down the road, there are other drugs we haven’t tried, though he can’t vouch for them when so many have failed. And we can also revisit surgical options as well as VNS. VNS doesn’t thrill me, as I haven’t seen as much success with that online as I would like for such a major surgical/implant intervention. What is VNS? Read here. That being said, like any treatment, one person’s fail is another’s miracle.

Please cross your fingers for the vigabatrin/Onfi combo and no further change on the ERG!

Last night, we attended a meeting with a Met Life rep regarding financial planning for special needs. The truth is, we don’t know where TSC will have Connor as an adult. Maybe he’ll be doing great and self-supporting, but we just don’t know at this point. So it was time to look into how to plan for the possibility that he may not live entirely independently, possibly because of cognitive issues, or maybe because of health/epilepsy issues. Thank goodness, we did! It’s pretty easy to complicate your child’s situation and have no idea you are doing so. If you have a child receiving any government benefits, such as Katie Beckett or if they are over 18 on SSI, if they inherit anything adding up to over $2,000 they can lose their benefits! Who came up with that number as a cutoff? Seriously? And can so easily happen by accident–savings bonds purchased for them by a relative, naming them directly on a will, putting them as your life insurance beneficiary, or just not having a will and they automatically inherit. Once those assets are spent, they can reapply, but those of us who have applied for such things know how nightmarish it can be. And losing them even temporarily can wreak havoc. The presenter shared a story of a woman in her 50s or 60s living in a group home supported by Medicaid. She had been there for a long time. When her parents passed, they had no will and she inherited what they had, which wasn’t much. She had to move out of the home, and within a few months the assets were spent. She could then reapply, but her spot had been taken. She lost her parents and her home.

We will have to have a special needs lawyer help us with a special needs trust that will protect him from anything like that. Anything that he inherits must go to the trust. That way, if he’s receiving any benefits they won’t be affected. Don’t worry, the government gets theirs. This kind of trust is taxed at one of the highest rates, in case you were worried they’d run out of barricades for our national monuments.

Join us for a meeting with new Atlanta TSC clinic director, Dr. Wolf!
Sunday, November 10, 2013
2 – 4 p.m.
Mount Vernon Baptist Church
850 Mt. Vernon Hwy NW
Sandy Springs, GA 30327

Dr. David Wolf will be spending his afternoon meeting the local TSC individuals and families of the TS Alliance of Atlanta/North Georgia. Join us for this valuable opportunity to meet both Dr. Wolf and other local TSC individuals and families!
There will be light refreshments available.

RSVP to Becky pin.the.map@gmail.com

Guest Blogs, Reviews and Giveaways

Leadership Lessons From a Special Kid (and giveaway)

July 24, 2013 Rebecca Gaunt 7 Comments

Note from Mixed Up Mommy: I’m pleased to have author Bill Treasurer as a guest blogger today. Proceeds from his latest book will benefit children with special needs. I also get to do a giveaway with five copies of his book! If you would like to receive a free copy, simply leave a comment on the post. I will draw five names on Saturday July 27 and contact the winners, as well as post them here. Check his book out on Amazon.

By guest blogger Bill Treasurer

For the last two decades I have taught leadership development to thousands of executives across the globe. I’ve written books on leadership and courage, and a widely used courageous leadership training program. I even did my graduate school thesis on leadership. Despite all of the wonderful leadership lessons that my clients have provided me, few people have taught me as much about leadership as my nine-year-old daughter Bina.

Bina (rhymes with Tina) has cerebral palsy. She is also profoundly deaf. Both challenges are the byproducts of a virulent staph infection she contracted at the hospital just days after she was born. Americans with disabilities make up the largest minority population in the United States. Some 54 million Americans have a disability of one form or another. And anyone who has been graced by the company of such people knows what a blessing it can be. It can also be heartbreaking. During Bina’s first year, it became clear that she was lagging behind her twin brother, Alex, in significant ways. Alex rolled over. Bina didn’t. Alex crawled. Bina didn’t. Alex responded to our baby talk. Bina didn’t. Alex received adoring smiles from strangers. Bina didn’t.

The first leadership lesson Bina taught me happened early on. At first, all I could focus on was Bina’s disabilities, which caused me a lot of anger. I’d think, “Why did this happen to her? Who caused this?” and “Why can’t she do the things her brother can do?” Then, just before she turned two, a friend of mine wisely suggested that I start focusing on Bina’s abilities, not her disabilities. When I heeded my friend’s advice, Bina started progressing much more rapidly. In some strange way, by focusing on her disabilities I had become a block to Bina’s progress. I had pigeonholed Bina as a “handicapped” person and had started treating her as such, often by babying her. Once I started focusing on her abilities, my parenting shifted from taking “care” of her, to fostering her strengths by encouraging her self-reliance. Leadership lesson #1: People go farther when you focus on what they can do, not what they can’t.

The next leadership lesson came when Bina was four. At that point, Bina was still in a stroller because she couldn’t walk. Her brother Alex, on the other hand, was turning into a rambunctious little Ninja gymnast. To encourage his aerial hijinks we set up a trampoline in our backyard. I’d teach Alex trampoline moves while Bina watched from the sidelines. At the end of our little practice sessions I’d always make time for Bina too, holding her little hands and bouncing up and down.

One day, just to see what would happen, I sat behind Bina, stood her upright, steadied her hips, and let go of her hands. Then Bina did something she never had done before: She took three full steps. On the hard floor, Bina was never confident enough to do this. Kids with cerebral palsy fall down a lot, and Bina was no different. She had fallen off enough chairs to know that the hard floor wasn’t her friend. So watching Bina take three teetering steps was hugely thrilling. On her fourth step she fell to the mat and giggled as my wife, Shannon, and I cheered wildly

Recognizing that we were onto something, Shannon and I began to set aside time each day to walk with Bina on the trampoline. Before long, three steps turned to five steps, and five turned into ten. Then we set up a long runner of matted cushion on our back deck, figuring it would help her make the transition from the spongy trampoline surface to the hardwood floor. Drawing on her trampoline successes, Bina cautiously stepped out on the runner. Soon she was taking more steps on the deck than she was able to on the trampoline. It was all terrifically encouraging and inspiring. By setting up our backyard trampoline, we created a safe way for Bina to do something that she had previously felt was too unsafe to do. Walking, formerly a frightening and potentially injuring experience, now had become fun. Notice that the action we wanted Bina to take (walking) hadn’t changed. What had changed was the consequence (and only temporarily). The spongy trampoline surface was far more forgiving than our hardwood floors. When we surrounded the same action with safer consequences, Bina became much more willing to take a risk. Leadership lesson #2: If you want people to take more risks, make failure safe and success possible.

The third leadership lesson involves communication. Bina has had a cochlear implant since she was two-and-a-half. The technology has been a wonderful blessing in that it has allowed Bina to hear and acquire language. Along with intensive speech therapy, the cochlear implant has made communication with Bina possible. Still, Bina talks differently than most people. Her deafness impacts her intonations and her cerebral palsy affects the use of her tongue and mouth. So communicating with Bina takes a lot more patience and listening. It is not uncommon for her to have to say something a few times before you fully understand what she’s saying.

Few things provoke other people’s judgment than how one communicates. Northerners make judgments about southerners due to dialectic differences in pace (northerners tend to speak faster than southerners). In the same way, it’s common for people to make judgments about the intellect of people with special needs because they often talk differently. This is especially true for people who have cerebral palsy whose faces often contort and shift when they talk. But when you take the time to listen deeply to a person with special needs you get to know their preferences and perspectives. Over time I’ve learned that communication works best when I communicate with Bina on her terms, not mine. This requires adjusting to her cadence, intonation, pace, and unique dialect. Communicating with Bina on her terms has allowed me to discover how wonderful, caring, and beautiful Bina is, and it has deepened our connection to one another. Leadership lesson #3: Effective communication results from patience, listening, and setting aside your own communication preferences.

Being Bina’s dad has been one of the greatest joys, and greatest educations, of my life. I’ve learned powerful lessons about dignity, unconditional love, prejudice, and leadership. You couldn’t pay me all the money in the world to take Bina away from me, though I would give you everything I own for her to not have had to suffer through her challenges. In the end, though, my job is to love Bina as much as I can love her to help her go as far as she can go. To me, that’s the ultimate job of a parent…and a leader.

Bill Treasurer is the author of Leaders Open Doors, which focuses on the responsibility that leaders have for creating opportunities that cause people to grow. The book is carrying out its own message: 100% of the royalties are being donated to programs that support children with special needs. Learn more at www.leadersopendoors.com.

Bill is also the author of Courage Goes to Work, an international bestselling book that introduces the concept of courage-building. He is also the author of Courageous Leadership: A Program for Using Courage to Transform the Workplace, an off-the-shelf training toolkit that organizations use to build workplace courage. Bill has led courage-building workshops for, among others, NASA, Accenture, CNN, PNC Bank, SPANX, Hugo Boss, Saks Fifth Avenue, and the US Department of Veterans Affairs. Contact Bill at btreasurer@giantleapconsulting.com, or on Twitter at @btreasurer (#leadsimple).

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Forgetting Yourself…and Finding Yourself

June 1, 2013 Rebecca Gaunt Leave a comment

Day 23 of Guest Blogging for TSC Awareness

By guest blogger Susan McBrine

Being a mom is the hardest job any woman ever has. No one prepares you totally for the complete neediness of a baby, or the way you suddenly know for the rest of your life you will love this baby with a love you didn’t know you even knew how to give.

You are in awe of this feeling and overcome with joy every morning when you stagger sleepily into your baby’s room and see her tiny face light up when she sees you.

No one can prepare you for the absolute wave of grief that hits you, however, when a few months later, a strange doctor tells you that baby has tuberous sclerosis .

The baby you envisioned watching graduate from school, get married, become an adult… All those dreams of normalcy seem to vanish with two words spoken from a person you now want to slam your fist into and call a liar! You ask why, why? And you are angry, sad, and finally determined to fight this disease. You also know that nothing will change the love you feel and nothing will stop you from getting this child the medical help she needs to live a happy life.

As the years go by , perhaps you have other children, perhaps your marriage fails or gets stronger, perhaps your friends you thought you had fade away from your life because your every waking minute is consumed with caring for the child who now has brain tubers, seizures, too many medications to count, kidney tumors, behavior problems, autism and major developmental delay. Those friends have been replaced with, perhaps, other moms of a special needs children, who are the only ones who understand your devotion to this special child. The child, who despite driving you mad several times a week, is so endearing when she finally can say ” I love you ” and finally can interact and play with other children .

Your heart breaks for her every day and your heart celebrates every day at her slightest progress because it is a huge long-awaited accomplishment. You stay awake at night wondering how you will pay for her medication, whether you are being a good enough mom to your other children, a good enough wife, a good enough teacher, worker; and you worry, most of all, if your child with TSC will live, have a quality of life , a future. And what will happen to her if something happens to you?

What you don’t worry about is yourself. You’ve forgotten to worry or even think about yourself most of the time because there is no time for you. Doctors’ appointments, IEPS, hospitalizations, blood tests, therapy appointments, more doctors’ appointments, medical tests, MRIs, EEGs, sonograms, surgeries, psych evaluations, teacher conferences, trips to pharmacies …

It seems endless and every few years another body part or organ pops up with a TSC symptom and you grieve all over again for the healthy child you dreamed of and you cry for the suffering one you have now and love so much. The tears are always there just below the surface.. But so is the joy that she has defied the doomsday prognosis, the life expectancy. And she has taught your other children compassion, kindness and tolerance. You are so proud of them and grateful they are healthy and normal.

You thank God for every day she lives and beats TSC and you thank Him for making you strong enough to raise her. One day you realize she has made you a better person! But your marriage may not have survived the strain because he was never really committed or never really dealt with his grief. It’s too late to wonder why. The marriage is over. It ends when you understand he isn’t capable of standing by your side and never was.

Or your marriage and bond grows stronger, if you have the right man, because of this special child.

Your child is now an adult with, perhaps, a child’s mind, and you have spent your adult years in a career working with teens and children in regular and special education while raising your own and you realize you’ve still forgotten yourself.

You’ve spent many hours explaining to friends, relatives, doctors, teachers and strangers what tuberous sclerosis is and helping other mothers cope. And insisting to them that you are neither a saint nor a martyr for choosing to raise this child despite the many people who say,”I don’t know how you do it.” Sometimes they say that because they are secretly wondering if they could do it if it was their child. The answer is simple . You have no choice. Your child needs you.

One day you also realize that finding yourself will be the healthiest thing you can do. You meet and fall in love with a real man, just when you thought they didn’t exist (as I did) if your first marriage has failed. Eventually all your children, except your TSC child, leave home to successfully live their own lives. And then your worst fear comes true. TSC has won the battle. And in my case the following happened:

Your TSC child’s second kidney is failing after endless hospitalizations and medical complications, including a year with a feeding tube. Dialysis and transplant are considered, agonized over, and then your trusted pediatric neurologist and you make the decision that she would not tolerate either successfully, only prolonging her suffering. You can no longer care for her at home and work also, which you have to do, so you reluctantly, sadly, place her in a group home with a nursing facility where she is surprisingly happy and social for a time. Meanwhile, you continue to work and travel two hours one way to visit her on weekends when you can get there.

About a year later she is facing complete and total kidney failure and you are facing hospice care for the child you fought and battled for 30 years to keep alive. Now you realize you have to allow her to die and end the suffering…it seems impossible to bear the grief this time.

Even though you are finding happiness in life, your world is collapsing again because your baby, your first born special child is dying and you have to let her go after a lifetime of helping her to live. How does a mother endure this pain after you were chosen to learn all the lessons raising a special child has taught you? You lie awake at night wondering and greiving all over again and you ask why? Why?

There are no answers…but you know after burying this child that the hardest thing a woman can do ever is to be a mother and watch your child die.

Your other children continue to bring you great joy, pride and love in your life. You are so thankful you were able to experience the joy of raising other non-affected children to adulthood. Yet you will always grieve for your special child and miss her unconditional love, total innocence and uncanny sense of humor in spite of all her suffering.

Yet you have found yourself finally…. Because you realize you were meant to be her mother to become the person you now are. This was my TSC journey and one typical of so many other TSC moms who have made similar journeys. But their journey will be more hopeful and less lonely because of the Tuberous Sclerosis Alliance. I hope all the moms find themselves because I know we all forgot ourselves for a time.
Global awareness has increased today. And there WILL be a cure.

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Focusing on Today

May 31, 2013 Rebecca Gaunt 1 Comment

Day 22 of Guest Blogging for TSC Awareness Month

By guest blogger Cassie McClung (Houston, Texas)

My husband and I learned that we were pregnant in the late spring of 2007. Married just two years, we were a bit surprised, but honestly thrilled beyond words. We had a ton of fun preparing for our new addition, even despite the fact that I was so horribly nauseated for the first five months that I lost 12 pounds. Her development, however, was always right on track, and every test and check-up went well. Just a month before her due date, we decided it would be fun to get the new 3-D ultrasound photos that we kept seeing at the doctor’s office. We ended up trying three different times. Every time we went, the baby had her arms up around her face, completely covering every feature. The first time was kind of cute. The second time was a little frustrating. The third time I asked the technician, “Isn’t it a little unusual to have her arms up every time?”

“Yes,” she said, flat out, “I’ve never experienced this before.” I remember my heart went into my throat. Could something be wrong? The doctor dismissed my concern later, telling me not to worry. I tried not to.

The next thing I knew my delivery date was around the corner but the baby was in breach position, so a C-section was scheduled. In late January of 2008, we were blessed with our beautiful daughter Avery. The surgical delivery went well, but within an hour of her birth, I was surrounded by a number of doctors with very serious faces.

They were concerned because it appeared that our precious newborn was having small but frequent seizures while under observation in the nursery. They bombarded me with a million questions at once. “Was she seizing in utero?” is the one that still stands out. WHAT?? What does that feel like? This was my first pregnancy. She kicked a lot, does that count? Were there other signs I should have noticed? I was stunned. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. I remember my delivery doctor turned to me and said, “I’m sorry,” before walking out the door, not to be seen again.

My husband and I were absolutely shocked and terrified.There was no holding, cuddling or bonding. I tried to recover quickly from surgery, all the while imagining my baby girl across town under the care of who knows who, doing who knows what. Complete and utter torture. This was when I started thinking about the genetic condition that runs in my husband’s family. We were told previously by family members that we should not worry about it…that it was basically no big deal. Then I heard someone at the hospital say it for the first time. TS. Tuberous sclerosis. We hadn’t a clue.

I broke out of the hospital early and rushed to the N.I.C.U. I couldn’t believe how tiny she was, hooked up to so many tubes…all of the nurses knew her name. My Avery. They already knew so much about her. They’d spent so much more time with her than I had. It felt so strange. At first glance, she looked pretty and pink, sleeping peacefully like a typical newborn. And then I saw it. All of a sudden, she puckered her little lips, turned bright red, and her right arm extended straight out. It faded quickly, but there was no mistaking that she was seizing. Nothing could ever have prepared us for what happened next.

We were shown into a large meeting room across the hall. A doctor sat across from me and five or six med students and residents sat next to her. I’ll never understand why they were invited…why they needed to sit and watch this intrinsically personal experience unfold. They never spoke, just watched. The doctor slowly explained to us that Avery had been born with a rare genetic condition called tuberous sclerosis. Benign tumors grew willy nilly in her brain and heart. She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.

So that’s when Avery’s brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that’s when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive: a hemispherectomy. The two sides of the brain would be disconnected from each other, and large portions of “bad brain” would be removed from the left side. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.

This is the part where I have to pause and breathe. Because more than two years after the fact, I can still feel the residual effects of this man’s words pulsating through my mind and body. I can still close my eyes and remember the breath-stealing sobs I cried as I said goodbye to my week-old daughter and heartbrokenly handed her to the nurse that would take her to the operating room. We waited hours and hours, hardly breathing, wondering if we made the right decision. It was, and Avery did beautifully. Her strength amazed us. It still does! She was in and out of brain surgery three times in her first month of life. She came home after one month and five days in the hospital, eating on her own, cooing and wiggling. The seizures had completely stopped. We had renewed hope, renewed faith. Her future appeared so much brighter.

We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better– i.e. giving the “normal” side of her brain time to take over tasks that the opposite side can’t handle anymore…and we couldn’t have done it any earlier!

Avery actually needed two more brain surgeries, at three months of age and at five months, before the seizures stopped returning. She continued taking Vigabatrin (Sabril) for the next four years as a back-up, in case they did try to come back. It was the only drug that had ever slowed down her seizures before.

For four years, Avery thoroughly enjoyed a total break from seizures, as did her parents. We were busy attending to her other many needs, like the fact that the surgery had resulted in the left side of her body being extremely weakened (hemiparesis). No one ever mentioned this side effect before surgery. It was then, and is now, our biggest challenge among many. When she was still not sitting up by herself at 18 months and after lots of therapy, we knew we needed a lot more help. We were lucky enough to find an amazing, private special needs preschool that had experience with children just like Avery. They taught her to sit and scoot. They taught her sign language, how to drink with a straw, and how to use a fork and spoon. And they continue to teach her now. I don’t know what we’d do without these amazing teachers that love my daughter for exactly who she is, and not what she lacks.

Sadly, this past year the seizures returned. We were devastated of course, but not surprised. We knew it was a miracle that they stopped for as long as they did. They are under control again now with new meds: Onfi and Vimpat. She seems a little more tired now, but overall a happier disposition.

Walking is still our biggest goal. The left side of her body just doesn’t want to cooperate! Although still extremely developmentally delayed, her cognitive skills continue improving. No words yet, but lots of sounds. We have three PT’s, two OT’s and two SP sessions every single week, on top of her school “work.” Avery works harder than any kid I know, and she does it with a smile. She has taught us endless lessons about love, grace, and the simple joys in life. Almost two years ago, we were blessed with another sweet girl! A healthy, TS free little sister, who dotes on her older sister.

As many special needs moms have said before me, it’s impossible to focus on the future right now. In order to get there, we have to focus on today. Today she is healthy, happy and working as hard as she possibly can to reach her potential. What that is, no one knows, but we will move heaven and earth to get her there.

Please check out Cassie’s blog at www.abubslifeblog.blogspot.com

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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.