Saturday, August 30, 2014

Go Fish Go!

video

Finally, after two years, I got my act together and organized swim lessons for Ben with an instructor at the pool we have joined the past few summers. I saw her two summer agos working with a child with special needs, even got her phone number, but never made the contact until this year.

Of course, when we showed up for the first lesson, Kathy already knew Ben from school and knew that he was a stubborn one. (That kid sure gets around.) The lesson in the video above is his fourth and final one for the summer and the growth in his abilities is remarkable. The biggest change she made was taking off his life vest and putting on a three-block flotation belt. It made Ben use more of his own body to swim and also gave him the freedom to move more easily through the water.

With such success, we are implementing some of Kathy's ideas in Ben's weekly physical therapy in the pool and talking with the YMCA about finding an instructor that can work with Ben on a regular basis.

Thursday, August 28, 2014

Mini Med School for Moms (& Dads)

Dr. Kilbane was one of the doctors I interviewed for the nutrition article for Charlotte Parent. In order to reach more families at a reasonable price she is offering webinars about nutrition.  Just in an hour phone conversation, I learned so much from her, so I can imagine a series of workshops would provide new and practical information for parents. 

If you are interested, you have to act fast - they begin next week. 




www.sheilakilbane.com

More about Dr. Kilbane: Charlotte Observer Article

The Power of Food



In June, I was asked to write an article about nutrition and its effects on special needs children. 
The article is out. This is the link:

Wednesday, August 27, 2014

The Great and Terrible

The tune "Ding-Dong The Witch is Dead" from The Wizard of Oz rang through my head when I was introduced to Ben's new school speech therapist last week at Open House. It meant the old one was finally gone after three years of doing battle.

I had given up on Ben receiving any type of formal speech therapy at school. The final straw came when I compared three years of IEP and progress notes and found that the therapist had copied word-for-word her comments every time. She changed nothing. From the beginning, Ben's response to her was to kick and bite. I never denied he did those things to her, but it let me know that something was not right and I had the IEP reflect that Ben could not be alone with this therapist.

Luckily, Ben's teacher and principal supported what we were trying to do with the NOVA Chat and communication in the classroom. They did everything within their power to make sure Ben received services, but in many ways, their hands were tied. Ben was not stagnant, but he was not getting the consistent instruction he needed, nor were the staff getting the help they deserved.

This morning I met with the new speech therapist to give her a lesson on the NOVA Chat and discuss ways to use it in the classroom. She caught on quickly and already had ideas for starting conversations with his classmates. Ben's private speech therapist is awesome. We have already begun the process for both therapists to consult with one another on how to best move him forward, and tie what we do at home and school together.

Patience, keeping notes and perhaps clicking my heels three times can sometimes yield the results needed.


Tuesday, August 26, 2014

Riding Down the Open Road


AMBUCS is a wonderful organization, providing adaptive bicycles and tricycles for kids and adults with special needs. Ben is on his second tryke, and this one was a gift from his Aunt Olivia a few years ago.

One of our biggest challenges in the past has been getting Ben to keep his hands on the handlebars, but he is now listening to our directions and holding on tight. We added a strap to help keep his chest in place and provide extra support.

With assistance, Ben can ride up to five blocks now. When he gets tired, he starts to slump over. Holding his chest and body in place in addition to pedaling are hard work, but great exercise. Our goal is to get him to ride all the way to the playground after school to see his brothers. It is six or seven long blocks. I think it will be an accomplishment that will get lots of attention from other kids which is a great motivator for Ben. At the end of the day, like any kid, he likes to show-off.

Joey, walking beside Ben, is one of our faithful caregivers.

Monday, August 25, 2014

Back to School

Ready or not!


Ben - 5th grade
Logan - 4th grade
Sean - 1st grade

Friday, August 22, 2014

Chartered Territory

Many parents with special needs children chart behavior, medicine and any other information they may need to know. Up until this June, I had only made note when Ben had seizure activity and this was at the request of the neurologist. I had made sad attempts to track his sleep in the past when it was haywire, but nothing was consistent because I was too tired to follow-through.

I started this journey with a goal of a four week dairy elimination diet. Now we are on Day 60, tracking the following items:

  • Seizure medicine changes
  • Addition of allergy pill
  • Addition of probiotic
  • Bowel Movements
  • Sleeping hours (including any naps)
  • Dietary changes
  • Cheating with diet changes
We have learned so much from keeping this chart. As you can see from the photo, I did it "old school", on a paper calendar. I used pencil, pen and different colored highlighters to help things stand out. 

These are a few areas in which I think charting may help:

1. It is a good reminder about the healthy changes we are making in Ben's life and a motivator to continue with the regimen.

2. It is instant gratification to see when you are on Day 60 of something you thought you could only do for 28 days.

The yellow highlighted "P" stands for what you might 
think it stands for, and it is much improved from the 
constipation Ben experienced in May and early June.
3. It can validate any suggestions to the doctors based on observations from the chart. "The crazy mother" is at least backed by a paper and pencil chart.

4. For those of us who may be skeptics, it is hard to argue with a chart. Anecdotal stories carry more weight when accompanied with data.

5. Seeing positive change based on new ideas and behaviors motivates everyone to keep with the new system. Other family members and caregivers buy into the changes based on what they can see themselves on the chart.

6. Written down information is always better than keeping it in your head. Things are forgotten, details lost and then it becomes easier to just keep the same course, even if it is not working.

Charting could help with typically developing children too. Tracking tantrums tied to lack of sleep or food, bed wetting and drinking, screen time and behavior. If a chart shows a pattern and that tweaking a few minor things will make a change, it may be well worth the time and effort. 

I hope I won't have to do this forever, but right now, with so many good things happening, it would be foolish to stop now. Recording the progress will only help us make changes that benefit Ben.

















Wednesday, August 20, 2014

Weighty Retraction

Ben's annual visit with the pediatrician was today. I was excited to tell her about all the changes and updates he has had in the past year. But before we could get in with the doctor, the nurse had to check Ben's height and weight. First, I was weighed. Then, I picked Ben up and we were weighed together. The nurse did the simple calculations and gave Ben a weight of 69.8.

Huh?  That cannot be! He is 88lbs. Trying to wrap my head around yet another weight dilemma, I kept repeating those same lines about the impossibility of him only weighing 69 lbs. 

So we did it again. I stepped on the scale without Ben, and then with Ben. The nurse checked to see if my feet were placed firmly on the scale and that Ben was not touching anything that could cause an inaccuracy. 

Came back with 69.8 again. 

Two thoughts raced through my head: Damn! I wrote a blog post about Ben weighing so much, and made such a big deal about his weight with friends and family. I even had my father-in-law race out and buy a new life jacket to meet the weight requirement. My other thought had been remembering how relieved I had been that he weighed so much because I felt weaker picking him the past several months. 

So, now I am not only weak, but a liar too. 

Not one to dwell on my faults, I decided to see how this had been a learning experience:

1. I learned that a doctor's scale can be wrong which can be translated to lots of other things. If something does not seem right, even when you are with trusted medical professionals; ask questions, repeat a procedure or in our case, weigh in again. A false 20 lb difference can dictate an unnecessary and possibly unsafe change in medication dosages.

2. After hearing that Ben weighed 88 lbs, I started to lift him less, not wanting to injure myself. Making him walk made more sense because he was 88lbs. Will I go back to carrying his 69 lb butt around? No, he needs to walk when it is appropriate. 


I have to admit, for one short minute I was going to let this weight stuff all slide by without any mention, but my conscience got the best of me. 

Doctor Doctor

When my longtime friend, Carla, strongly recommended Ben see a chiropractor during the period when he was not sleeping, I decided it would not hurt to try it.

Luckily, the mother of one of Sean's classmates is a chiropractor, and I was able to get him an appointment with Neva Doctor

At the first appointment, Ben was apprehensive but warmed to Neva quickly. By the second visit, Ben nearly jumped out of the car to get into the building. Once inside the room, he moved his foot pedals aside to get onto the table. To me, he clearly was enjoying the pressure Neva applied with her special tools. Her approach with Ben was gentle. She did not force him to do anything he did not want to do. She asked him if it was okay to massage his feet or face, and then she waited patiently to see if he responded positively.

The goals of these chiropractic visits were to help Ben with sleep and breathing. Because we have introduced so many things during the same time period (no dairy, new medicine schedule, allergy pills), it is hard to say if any one thing has made a difference in Ben's health. The fact that he is excited to be at the office and get on the table tells me that the doctor must be doing something positive for him.

Unfortunately with school and crazy schedules, it will be hard to plan consistent visits with the chiropractor. We will try to work out something so Ben does not have to wait until next summer to see her again.





Monday, August 18, 2014

28 Days of Cayden



Between the ages of two and four, most of Ben's therapies were at a clinic. I spent many hours with Logan hanging out in the waiting room while Ben did his thing with the therapist. It was not a favorite time of my life, but a highlight was meeting one other mom, named Shira, who also had a child with special needs who was also the same age as Ben.

My first impression of Shira was one of awe. She had a laminated card system explaining her son, Cayden, to anyone who cared to know. It hung from his wheelchair and was brightly colored. Not only was she organized and informative, Shira was also approachable and friendly. Having someone to talk to during the office visit made the time go by much more quickly.

After weeks of spending time in an old dark waiting room, we became friends. Now we do not see each other very often, but we have a bond through our children, shared experiences and respect for one another. I truly feel that if I needed something, I could call upon Shira. (She did bring a large group of girls to the Special Olympics Opening Ceremonies.)

Cayden was a sweet gentle boy, always with a bright smile and very curly blonde hair. You could not help being drawn in by his charisma. It was obvious from the first time I met them that Shira provided Cayden with every possible therapy and care needed. He had the first computer I had seen for a special needs kid.

We attended Cayden's birthday party and Ryan met Joey, Cayden's Dad, and they hit it off too. Logan played with their younger daughter, Skylar. If we lived closer to one another, I think we would visit much more often.

Then one day, Cayden died suddenly in his sleep. We attended a service the family held at a park. Everyone was given the opportunity to write cards and send up balloons in honor of Cayden.

Joey and Shira are remarkable people and incredible parents. We are very fortunate to know them. Cayden's family remembers this great boy with love. Often, Joey posts photos and thoughts about Cayden on his Facebook page. Shira has decided to write 28 Days of Cayden, in honor of what would have been his 11th birthday on August 28th. It will take more than a moment to read, but it is worth every minute getting to know this family and how they operate with such grace and love in their hearts.

Sunday, August 17, 2014

Caught in the Act

Leave it to Kim, Ben's longtime caregiver and family friend, to catch Ben doing the chair trick and videotape it. It is not for the faint of heart, especially mothers or grandmothers. The camera jumps when it looks like Kim might have to prevent a spill.

After witnessing this climb, Kim's recommendation was to leave the tray off the chair so that Ben could get in it properly without risking life and limb. Sounds like a good idea to me.

video

Thursday, August 14, 2014

Just Do It


Early one morning, I found Ben sitting on top of the tray to his Rifton Hi-Lo Activity chair. Everyone was sleeping so there were no witnesses to this triumphant climb. Most of us were dumbfounded by this accomplishment. Often, I wish we had a "Benny Cam" to catch Ben's crazy antics and ninja-like moves on video.

A person close to Ben was sure Ryan was playing a practical joke, and put Ben up there for me to find. I assured this person that my snoring husband was just as surprised as me. If not for my own ninja like reflexes with the camera, no one would have believed this story. My being believed superseded my worry for Ben falling.

After some investigation, it became obvious that Ben had searched the fridge for food, left unwanted zucchini bread on the floor and when he did not find what he wanted, decided to wait in the dining room for someone to bring food.

Ben has waited in the dining room numerous times, but always in a regular chair. He has been able to get into a dining room chair on his own for years. Why did he choose the most difficult challenge this time? Grandma's response was that Ben took the Nike motto, "Just Do It!" to heart.

Wednesday, August 6, 2014

Turning 11 with My Favorite Things


Started the Day with a Birthday Donut.


Train ride to Steak & Shake.

Milkshakes all around. To he** with dairy free, it's my birthday!
Perhaps wearing the hat is not one of the favorite things.
Sean entertained us with pole dancing.



Ended the day swimming with friends and family.




If Ben looked a little dazed and confused, this birthday celebration was also day seven of his sleepless week.


Monday, August 4, 2014

Zombieland

After 34 days of mostly sleeping bliss, it came as a shock when Ben stopped sleeping. At first, I blamed cake and cookies, but when sugar was not part of his diet in the following days and sleep still alluded Ben, I panicked. Ryan and I went about our days in a hazy fog, hoping each night would bring sleep. More days would follow before we would find a solution.



Kim, who works with Ben each day, saw our pain and looked up ways to help Ben fall asleep after hearing about YouTube videos by Heather Feather. I was a skeptic, but by the 5th or 6th night, I played Heather's crinkling paper video. Although I dozed off, Ben left the room unimpressed.

Family and friends sympathized and offered their solutions. We tried essential oils, TV, no TV, melatonin, Benadryl, special music, walks around the block and feeding Ben right before sleep. Nothing worked.

During the day, it was like Zombieland at our house. Ben was a wild man until 3am, but during the day, he was grouchy and uninterested. On a few occasions, Ben did fall asleep in Logan's bed after throwing him out in the middle of the night. Thankfully, Logan obliged by sleeping on the couch.

Luckily, I have a mom who will listen to my complaints and will analyze a situation to death with me. On the 7th day, during one such conversation, I reviewed everything and anything that could possibly be causing this sleeplessness. And it finally dawned on me - on the very day Ben stopped sleeping, we also decreased his Lamotrigine by 50 mg. Lamotrigine is one of the two seizure medications Ben takes daily. We were on week two of a five week process to eliminate this specific medicine.

Immediately, I called the doctor and by the next day, we increased the dose by 50 mg. Ben slept that night and has slept the last four nights. At this point, we are staying with this dosage, charting behaviors, having an EEG in two weeks and seeing the doctor in one month. I have no idea why this medication affects Ben's sleep patterns. Is it seizure related? Hopefully, the neurologist will be able to explain some of it.

In the meantime, we are all feeling human again.