Tuesday, May 29, 2012

Roughing It

I love everything about camping - sitting by the fire, eating outside, cooking on the grill, hiking, listening to the night noises and even the shower houses. Just give me a real bed to sleep on after I've eaten my very last s'more.

I found the perfect solution - all the camping fun with a small cabin filled with a set of bunk beds and one full-size bed. No bugs or rain to worry about. And did I mention that these little cabins have air conditioning in the summer and heat in the winter? I do need some comforts. (I just went down a few notches with my friend Carla, who thought I was superwoman for camping. She did not have the full story. I do believe in full-disclosure and the cabin will be seen in the photos ;)

Monday, May 28, 2012

Unnatural Dislike

We are fortunate to have a local nature museum in Charlotte that is wonderful for kids (and adults). Well, wonderful for some kids. Ben hated this place from the very first time we set foot there more than 6 years ago. Each time, I convince myself that he will love the animals and exhibits. It is an easy place for me to take all three boys by myself and watch them safely.

Usually he is in his walker and he spends the entire time at the doors trying to get out. Since he was in his chair on this visit, he cried, yelled and whined to make his position known. This photo serves as a reminder to avoid the nature museum when Ben is in the group.

The next week I took Ben to another kid museum and he loved it. He sat at the make-believe restaurant table, made several rounds at the fire truck and seemed happy to be a part of the fun. I cannot figure out why one place is fun and the other not. Ben likes the zoo so I don't think it is the animals. Perhaps it is a smell, noise or something else I do not feel or notice.

I am reminded of a story my aunt told me several years ago. One of her sons cried every time he rode in the car. She said it was awful. He could not talk yet so she did not know what was wrong. Finally when he was old enough to explain the problem, he told her he was dizzy and nauseous from being car sick.

Having the words to communicate can make all the difference.

Sunday, May 27, 2012

Including Kids in Service

Two summers ago, when Logan was five years old, we met a homeless man, named Paul. It was a brief meeting, but it had a world of impact on Logan. After talking for a few minutes, Paul and I realized, we had a shared acquaintance - my neighbor, a social worker at the local men's shelter.

The idea of homelessness had popped up many times. Living in a city, we see people pushing carts around, hanging out under street bridges and occasionally on a bench. Logan had asked endless questions about their life living on the streets. After seeing Paul, he wanted to solve the problem of homelessness. He suggested we put signs up around the city showing homeless people they could come to our house. Logan is a sensitive child and feels things very deeply and thoroughly. He thought about how Paul had to sleep with his hands under his head because he did not have a pillow.

In lieu of signs pointing to our house, I reached out to my social worker neighbor to ask what we could do to help Paul specifically. She suggested we put together a few items he could use - anything from denture cream to a gift card to McDonald's. Logan came with me to choose the items, adding some things he thought were important.

I took Logan to the men's shelter to give the bag of items to my friend who would then give it to Paul. We kept track of Paul for awhile, he did get a job and a bed at a motel. Unfortunately, our neighbor felt sure that it would not last. He had substance abuse issues that would keep him from staying on track. Logan seemed to move on from his homeless crusade, and I did not want to open up discussions with a five year old that were even too hard for me to understand.

Last week, my friend Wendi sent me this website about making bags for people who are homeless. It comes from children seeing a need and wanting to help. Take a look, see if it fits for your family and give it a try. I think it is always important and safe to work with a local agency or church so that you know that your kind of help is needed and appreciated. No sense going to a lot of trouble for something that may not be used.

Blessing Bags

Other suggestions ideas of things to include or not include (from the blog comments):

- plastic rain poncho or large heavyweight garbage bag
- those extras from takeout - cutlery, napkin, hand wipes, condiments
- facecloth or small towel
- pkgs of cup-a-soup, coffee and tea
- collapsible drinking vessel for easy storage
- whistle so they can call for help if necessary
- small first aid kit
- any of the small travel sized items you can buy

Don't Include:
mouthwash - don't include if it has alcohol content
gift cards - sort of like money so they could be traded for alcohol/drugs

Also - someone suggested putting the items in a new/gently used backpack instead of a plastic bag.

Saturday, May 26, 2012

The Long Story

To some it may seem like I dropped off the map for awhile. It is always hard for me to write about what is going on when I am in the middle of it happening. I am a processor - analyzing and dissecting experiences before I make sense of them. This long version is a timeline, a written record of Ben's behavior, our reaction and the doctor's response. It will serve as an invaluable tool for me when I meet with the doctor in June.

April 25 - Ben participated in the Special Olympics. Although he had a big and busy day, he did not go to sleep. He did not sleep until the wee hours of the night, or early morning, depending on your viewpoint.

April 26 - April 30 - Ben did not sleep well.

April 29 - Ben seemed ready to crash for an early night.  The craziness was over. (Little did I know it was just the beginning.)

April 30 - Ben came home from school at 11am because he was sick at school and had seizures. I called the neurologist. Doctor increased current meds to 6 pills in the morning and 2 in the afternoon.

April 30 - I saw the seizures - head falling forward, 10-15 times in one sitting.

May 1-2 - Ben continued to have seizures in the tub, while sitting on the floor, on the toilet...everywhere.

May 4-7 - Grandpa and Nona visited. Ben was not himself. He was not happy or engaged. I kept him in his chair for safety. I limited his bath time. He ate locked in his chair. He was not really even trying to move around too much. If he sat on the floor or crawled, had a seizure, then he would hit the floor, hard.

May 8 - Ben was not walking - I was dragging him. His motor activities were decreasing.

In the middle of the night, I realized that I needed to alert school and therapists about Ben's situation.

I waited til morning (so they did not see a 3am timestamp on the email and think I was a lunatic) and asked them to disregard my usual call for independence and keep the seat in Ben's walker, use the Convaid chair and not to seat him near a table where he could hit his face. The physical therapist at school made these changes immediately.

May 9-15 - More of the same. I called the neurologist again to give them an update on Ben's condition. The additional meds needed 10-14 days to kick-in. I did not see an improvement so they scheduled an EEG for May 15.

May 15 - Ben had an EEG at the doctor's office.

May 17 - Ben refused to wake up in the morning. I dressed him for school with his eyes closed. I was worried something was wrong. We kept him home and he slept until 11am.

I called doctor to let them know that Ben was not himself. He was acting strange and regressing. He was still having multiple seizures.

At suggestion of doctor, Ben had blood work done to check levels of medication in his blood.
The doctor called in a new medication to add to the regimen. Start with 1/2 pill at night and then increase to another 1/2 pill in the morning. Still taking the other 8 pills.

May 18 - Seizures stopped and I slowly saw Ben become more like himself. Just a little though. He climbed to the dining room table and sat in a chair, something he had not done in awhile.

Presently, Ben has not had a seizure since mid-May. We introduce the new 1/2 pill today. I am still not thrilled by his mobility or mood. I am puzzled and very concerned about his inability to walk as well as he was. Is it because we make him stay in a seated position for safety? Stay seated and legs get weak and then harder to walk? So I am not sure if the seizures are the cause, the medication or the lack of stimulation for the past few weeks.

And going back to April 25, is Ben's inability to sleep a sign that his brain is gearing up for seizures or is it a coincidence?

All these questions swim in my head. I do not have answers and I do not believe a doctor would have a definite one either. I think it is all possible.

Ryan, whose heart is always in the right place, takes me out of my analytical, clinical mind, and says, "I cannot imagine how it must feel for Ben."


Friday, May 25, 2012

eSpecially Parents: Michele's Story

Michele sent this to me last week. She is one of the eSpecially Parents writers and you can catch up on her story here.

Check this out... It's about extremely rare disease research at NIH. It was aired last night on 60 Minutes. It was so strange seeing Ethan's doctors and the hospital we go to on TV!!!

This is basically a lot of what we go through... The teenage boy has an inflammatory disease similar to Ethan.

 60 Minutes

* When I posted this a few minutes ago, I had not seen this clip. Just watched it and learned a lot about how NIH works, the people involved and the resources available. It was worth the 12 minutes.

Saturday, May 12, 2012

Welcome Blessings

Welcome Blessings is a blog written by a mother in my neighborhood. We were introduced because her daughter, Mikisa, and Ben played in the pool during Ben's swim lessons.

I did not plan on putting this out just in time for Mother's Day, but as it turns out, it is quite appropriate. Please read it. The writing is good and the story is something out of a fictional movie. It is a good reminder that there are people out there who venture into the unknown and come out at the other end with more love in their heart and a special gift from God.

If you want to start with this entry, Mikisa Mae, please do so. I must warn you that you will be sucked in and read the rest. Just set some time aside.

Happy Mother's Day!

Tuesday, May 8, 2012

Hoping for a Crash

The pattern continues - Ben goes to sleep easily between 8 and 9pm, then something unexplainable happens and sleep alludes him. It usually lasts a few nights. This time it was 6 nights. These photos are from this period. After doctor prescribed pills and melatonin, he finally sleeps, but not until 11pm or so.

During his waking hours, Ben is raring to go. We try to wear him out with everything from church to shopping to parks. Nothing works. He takes our hands and leads us to the car. Ben sits in the car in hopes that we may go somewhere else. I let him sit there if only to give me a moment's peace. If someone stops by, he tries to lead us to their car. It's like he's saying, "Please, take me out. Anywhere. Just someplace."

Tonight he has finally crashed. I never thought whining and crying would be music to my ears and offer relief, but this is his sign that pure exhaustion has set in. Right now, he is curled under the covers in his bed watching good 'ole Bob the Builder. It is 7pm.

I don't know what causes this change in behavior. I know they are not Ben's fault - he is in a body without an off switch, sort of like the Energizer Bunny. Something must be going on in that brain of his - some type of activity. This is my only explanation.

It takes a lot out of us because he will not settle down, relax or even stop. Our patience wears thin. Our guilt of sitting him in his chair to get a moment's rest is high. I pray every night that this will be the night he crashes.

When he does finally come down from this crazy state, I forget it all until the next time. Must be my built-in parental coping mechanism or just old age setting in. 

Thursday, May 3, 2012

Grants for iPads

iPads are all the rage now for kids with special needs, especially children with autism. These sites were sent to me by various sources. I have not checked them all out and cannot speak to the quality and accuracy of the information provided. I do think there are many resources out there and if you think your child is ready for and would benefit from a communication device, there is a grant or funding source available to your family. It may just take some extra work to find it.

Here are some of the sites sent to me:

  • ACT Today
  • Danny’s Wish
  • The Adam Scott Foundation Autism Grants Program
  • Apps for Children With Special Needs (A4cwsn)
  • Hollyrod Foundation
  • iHelp for Special Needs
  • The iTaalk Autism Foundation
  • The Puzzling Piece
  • Small Steps in Speech
  • The Conover Company
  • Apple iPad web site
  • Accessibility features
  • The Top Five Tips to Get a Grant to Buy a iPad (article):
  • Friendship Circle Blog
  • Parent to Parent message board
  • Facebook- Special Needs Classroom
  • Special Education MangoMon Blog
  • Autism Society

  • If you have other sites to add, please add in the comment section. If you have had success with a funding source, please share your story.

    Tuesday, May 1, 2012

    Time to Weigh In

    When your child has seizures, it opens up a new can of worms. Finding the best medicine with the least amount of side effects and then getting the dosage just right is only the first part of this adventure. Bodies and brains constantly change making it possible that medicine and dosage may not remain the same for any significant amount of time. Staying current on seizure management involves charting seizure activity, doctor visits and vigilant observation.

    Two months ago I  noticed Ben's head dropping. This is his outward way of showing seizure activity. The head drop is worse if there is a table or bathtub in the way - bruises and bumps on Ben's eye and chin are common. I would see it once and then not again for a day or two. I was disappointed because I knew that Ben was at his maximum capacity for the dosage of this particular medicine. And this medicine had virtually no side effects for Ben. I watched Ben's behavior and noted what I saw, ready to talk about it with his neurologist.

    At the doctor's appointment, Ben was weighed. It was a big shock - Ben was 10 pounds heavier than what we thought. He had gained 10 lbs in 6 months. Who knew peanut butter smoothies could pack on the pounds? This explained a few things - his dosage was not enough for this weight and that's why his seizures were breaking through. This was easily fixed by adding a few more pills to his daily dose. No change in medication was necessary.

    Another mystery was solved. We all thought Ben had gotten bigger and I knew he seemed heavier, I just assumed I had gotten weaker since my medical maladies prevented me from working out over the past 6 months.

    I am also much more relaxed about how much and when Ben eats - I know he is growing and gaining weight. He has not gotten chubby or fat by any means. He is growing taller and his body seems to be filling in - legs, arms and shoulders are becoming more substantial.

    Ben and I gained weight together since September. I recently started Everyday Health, a free online food and exercise journal. Plug in your current weight, goals, height, age and activity level. The program gives information about how many calories may be eaten during the day to lose a pound a week, remain the same or gain one pound a week. I chose to lose a pound a week and supplement with exercise. So far, I am down 7 pounds in under three weeks! Hopefully this trend will continue - as I lose, Ben will gain.