Snow White the Therapy Dog

After much research, we discovered that Alex is too young for an official seizure dog. Most organizations require kids to be between the ages of 7-12, mostly because there is a lot involved in the owner training and managing the dog. We have done the next best thing, which is to locate a puppy with all the characteristics one might want in a seizure dog, and to train her ourselves through the obedience levels up to therapy dog, while using some of the techniques to train her to respond to a seizure. Frankly we hope Alex never has another seizure so she may not have a chance to get that training. Snow White, who is white as snow, with black spots as dark as ebony, including one that is shaped like a heart on her back, and a tongue the color of a rose, sort of, is the snuggliest puppy we have ever had. Part bloodhound, she also has the best nose on her of any dog we have ever seen. She seems to feel a natural pull toward Alex, which most dogs don't. She sleeps in his room and as she matures, we plan to transition her to his bed, although we may have to buy a bigger bed. Her paws are enormous. She is not the runner dog that Harry Potter is, and that is fine. Potter, who is an amazing caretaker, has begun to tip us off that Alex isn't feeling well. Three times he sniffed Alex all over on mornings when Alex wasn't well...we think he can smell the body changes. We hope Snowy will be as helpful. As far as therapy goes, Snowy is already proving her worth in dog food. When Alex is frustrated, he often goes into his room and reads to Snowy, or pats her "magic ears" which are as soft as velvet. If you have a child with special needs, I recommend you get a dog. There is nothing like the non-judgemental character of a dog, who will listen to anything and serve up a load of love, to ease a child's frustrations. Although I need to vacuum up dog hair every day, I feel Snow White is an investment in Alex's mental and physical health. In fact, she's been good for all of us. I often catch Erik snuggled up with her watching late night TV on the couch. I can handle the extra dog hair.

Breakthrough Seizures

Breakthrough seizures happen, despite medicine. Every so often, something happens that triggers the brain and it overpowers the dose of medicine someone is taking. Hopefully the medicine at least makes it a smaller seizure than it would have been. Alex had a breakthrough seizure last week. We had warning signs, but missed them at first. All weekend, he was cranky and agitated. That I noticed but I hoped he could just get extra sleep and feel better. But, he kept waking up at night, which has always been a sign that his brain was over active. On Monday I took him swimming, which I am realizing is not a good idea when I suspect his brain might be heating up. Something about swimming helps to trigger them. I can't decide if it is the chlorine, but it might be. Chlorine gives me a headache, so I think it might be antagonizing Alex's brain. Alex swam at least twice a day last summer without a single seizure--and he wasn't on drugs yet--until he got strep throat and then he had one. Then on Tuesday morning, he said he saw an orange glow around his dad. Minutes later, he got dizzy and then went through the usual motions of his seizures--vomiting, shaking, eye rolling. We had to give him valium and he slept for several hours. When he woke up, he had a migraine, which also seems to accompany the seizures. By early afternoon, he was finally able to wake up, talk and eat a little bit. He was talking very slowly for a few days, but after about a week, he seems to be back to his old self. We will continue to take it easy this week. We also upped his dose of medicine slightly, because he was on a very low dose, just barely within the therapeutic limits. Although I try to focus on today, and this year, and not get ahead of myself too much and ask myself, for example, who is going to give him rectal valium when he goes to college and has a seizure in his bed at 5am...but I am a huge planner and I usually have several plans in my pocket for every possible life scenario I might find myself in. When Alex had his seizure, Harry Potter knew what was happening. Alex is not particularly attached to Potter because he is Izzy's dog and Izzy won't share. Potter is also a bit rough for Alex who gets knocked over easily. But, he is a hound with a good sniffer and he spent the entire day pacing around Alex's bed whining and growling and trying to tell me that something was very wrong. This was all after the seizure, not before. But it gave me the idea of finding a therapy dog for Alex who would be trained to sense his seizures are coming, so that Alex will be able to take the necessary steps to protect himself. So, I'm hunting for just the right dog and just the right trainer. If anyone has any thoughts on this one, post a comment...I read and appreciate them all!

On Kindness

For the past two days, I have been teaching kindness to Alex and Izzy's preschool classes. Following the workshops, someone told me that the public school teachers complain constantly that all they do is discipline their students and that kids are just not kind to each other. I specifically designed my value-based language arts curriculum to address these problems with discipline, which boils down to a lack of character. I firmly believe that if the schools spent the first part of every school day teaching values, they would significantly reduce their discipline problems and increase the acts of kindness they witness on a daily basis. Students who live by good values create a strong and self-reliant character, and do not need to bully. Our quote for kindness comes from Plato, "Be kind, for everyone you meet is fighting a harder battle." Our classwork includes role playing, where one student has a problem and the other student shows support and kindness. In the end, they are required to make physical contact, whether it is by means of a handshake, hug or pat on the back. The kids connect, and they love it. I have been immensely impressed with my little 3, 4 and 5 year olds. They participate wholeheartedly and go home with an understanding of the values I teach. The homework for kindness requires the students to perform at least one deliberate act of kindness (hugs for Mommy, a love letter to Daddy, a nice deed for a neighbor) and then to draw a picture of themselves doing this good deed. If they can write, they may add text. Many people comment about how kind Alex and Izzy are to each other. They hug and kiss, they say "I love you" multiple times a day, they give out compliments to each other. People ask me how I ended up with such kind children. I always respond, "I force them to be kind". Even a small act of un-kindness gets discipline. I pick my battles and this one is a battle I fight. Values--all of them--are learned. In the beginning, they may be a bit forced, because they may not come naturally to children, but in the end (like when your kids go off to college), the values will be a part of their character, and living by these values will be as natural as if your children had been born knowing them. Spend a few minutes each day reinforcing the importance of kindness this week with your children. Seeing them do something nice for someone else may give you some comfort from the events of the past week. We are all mourning for Boston. As my grandmother, Mimi, use to say when she was feeling sad, "It's time to do something nice for someone." Show kindness and help your children grow into kind human beings.

Constraint Induced Therapy

Alex's left has has not progressed as fast as we had thought it would. He still has very limited control over it, despite our best efforts at yoga, strength training, karate, etc. Much to his frustration, we decided to cast his good hand and make that lefty work. When he was about three, we did this constraint induced therapy for about three weeks, with excellent results. The minute you cast the good hand, the brain switches and starts to focus on the weak hand. This is especially important because Alex's right hand has become very strong and capable of acting without his lefty, and so we need to take that side out of the picture for a while and encourage the right side of his brain to work. In the past, we have added a few shots of botox to the muscles most affected by the CP in his left arm. Botox incapacitates those muscles, which then relax and allow the other muscles to work harder and become stronger. After about three months, the botox wears off and the other muscles have had a chance to grow stronger, and the whole arm and hand function better. We did not do the botox this time, because we were not at the clinic that offers it, but may consider another round of botox before we head into the summer. Alex also got a brace for his left foot, which straightens it out as he walks and runs, and forces his heal down so that he walks heal-toe, which will lengthen that large muscle of the calf (the same one I ripped apart this fall), as it is not growing as fast as the other muscle of the calf. The tight calf muscle is therefore restricting his leg movement and makes the leg appear shorter. A long day for Alex yesterday (and for Mommy and Izzy). Fortunately, the cast on his arm is waterproof, and can be submerged in water-in fact, you can even swim in it-because around 9pm, Alex got hit with the stomach bug and threw up all over himself and right down into the hand of his cast. Yuck. Nothing like having a stiff, hot plaster around your hand and arm over slippery brown vomit. After a long bath, and much soaking, we finally got the cast clean. I tried to blow dry it to speed up the drying process. This morning it was dry. We may have to remove a bit earlier than planned.

Individual and Focused Attention

If you have a child who demands a lot of attention, chances are your other children may feel left out, and in fact, they are probably correct in feeling this way. Although we have tried hard to give equal attention to Izzy, the fact of the situation is that Alex needs a lot more help and support than she does. At times, she acts out to get attention. Since Alex has started on the trileptol, he hasn't had a single meltdown. The reason we took him for the EEG was because he was having these strange meltdowns and he would tell me that he couldn't control his brain. Our neurologist is very good, and I am so thankful that he listened to me. Sure enough, Alex was having constant spikes in electrical activity, which resulted in an out of control brain, even when he wasn't have obvious seizures. It is amazing that Alex was able to articulate that to me. Izzy has never had a meltdown. She gets mad and slams doors and tells us all not to look at her and to leave her alone, but she gets over it quickly and she always remains in control. Fortunately, she doesn't imitate Alex's meltdowns to get attention. But, she has her own way of pushing everyone's buttons and there are times when I want to sent her to boarding school and then I realize what she really needs is a big hug. This winter has been particularly challenging for many reasons, and Izzy has shown the stress in her behavior. So, last weekend, I took her for a girls' overnight in NYC and we stayed with two of her favorite people on earth, who are like surrogate grandparents to her. When we attended the Matisse exhibit a few weeks ago, Izzy decided she loves NYC. So, that's where we went when I realized she needed some individual and focused attention with Mommy. She loves everything about the city, the noise, the cabs, the tall buildings, the fashion and she especially loves her surrogate grandparents and their apartment which she announced, after inspecting the bathroom, was "perfect!" The two of us went to the zoo, saw a real polar bear, visited the Plaza, had ice cream, fed the horses who pull carriages just like Cinderella's carriage, and ate pizza in the train station. We were zonked on the return trip on the train. She was a new kid the next day. Even more grown up that usual, all smiles, full of stories. She is old enough now to remember that trip. She talks about it all the time. If you have children who sometimes get the short end of the stick, plan a day alone with one at a time, on a regular basis. I remember my Dad used to do this with us. Every year, he took us individually on a special trip, right up until the year he passed away. The last conversation I had with him on the phone, when I was in Indonesia and he was at home getting ready for Christmas, was that he planned to take me to the Plaza for brunch to celebrate my 24th birthday when I came home from my extended trip. He died on my birthday that year, and we never had a chance to have that brunch. When Izzy turns five, we'll make up for it, and celebrate at the Plaza, over brunch, a special day for both of us.

Swimming, Biking and Running Best Therapy for CP

We've had one of those winters which incites us to say things in the summer like, "I really hate winter." The truth is, I don't hate winter because it's winter, but because we get extremely sick and our activities, training, nutrition, and positive mental attitude are just off, no matter how hard we try to maintain our normal lives. My calf rip and subsequent blood clot meant we decreased our workouts. Then I suffered a very serious bleed, which finally couched me for many days. Then bronchitis and colds, and then a second round of bronchitis which became pneumonia, for all of us, meant a lot of sleepless nights and inactivity. After about 2 months where the kids missed their morning runs, 4-5 days/week of swimming and daily biking (indoors around the kitchen island), I noticed Alex has started to walk on his toes on his weak side, and to crumple his left arm up into a ball. In short, the lack of our therapeutic activities meant that Alex's tight side has become seriously tighter, at a time when he has been growing quickly. I have always said that the best therapy for him is not the 20 minutes expensive sessions with a professional therapist, but the daily physical triathlon activities we do: swimming, biking and running. Unfortunately, this winter proved my theory correct. Now we are facing an uphill battle to get those muscles back in use. With temps in the teens and ice covering our trails, we are faced with all indoor activities. Wearing shoes and a brace on his weak foot, we are now running 30 minutes every morning around the island. I have Alex in the pool, almost every day. I have also encouraged him to get back on his bike as well. We do much of this exercise to music and I try to make it fun. It is going to continue to be a long winter, despite what the groundhog said, and I need to find a way to return a bit of lightheartedness to our workouts. If you have a child with cerebral palsy, or even if you have a child with no injuries, to the best of your child's abilities, spend some time each week engaged in three activities: swimming, biking and running. You will be building important muscles groups and brain synapses.

Philanthropy

I have been debating whether to include philanthropy in my values book, since we already have charity. The two are closely aligned these days since the meaning of philanthropy (love of people) has shifted to accommodate modern society. But, I tried it out on the kids. In my introduction, I have pointed out that the distinction between philanthropy and charity is that philanthropy uses private money to solve problems at their roots, while charity uses public and government money to help alleviate pain. Both important, but different. I try out my classroom projects on the kids, before I include them in my book. So, this weekend, when there was nothing to do because Alex and I had pneumonia and Izzy had bronchitis, we spent a nice morning working on our philanthropy projects. After a brief discussion about how philanthropy solves problems at their roots, I asked the kids to draw/paint/color a picture of a philanthropic organization which solves a problem in the world. I threw out a few suggestions: animals, children, water, and environmental cleanup. After some thought, and building upon a previous conversation I had had with Alex, he decided he would draw a picture of a "poop water cleanup house that also grows watermelons because you can eat watermelons to stay hydrated if you have no water to drink" and he guessed he would place this philanthropy in Africa. So, he drew a lovely picture of poop water (sewage) with nice big brown blobs in it, going into the house and clean water coming out. Then he drew his watermelon patch. He actually made 7 different attempts and decided in the end that none of them was perfect, so he crumpled them all up and drew a picture of punctuality (the other value we have been studying this week) with a picture of him arriving to school on time, and fireworks going off in the distance. He mentioned that the fireworks start at 8am and school starts at 9am, so if you get there early you get to see the fireworks because "the early bird gets the worm", which was our quote of the week. Izzy, building upon her brother's comments, decided she would place her philanthropy in Mexico (which we had been studying this month) and would create a watermelon company that also made ice cream, because both would keep you hydrated if you were thirsty. She decided that she would serve ice cream with watermelon on top. Her artwork is amazing. She has grandma's talent for sure. In the end, she also added a cotton candy cart that could be pushed all around selling beautifully colored cotton candy, because everyone loves cotton candy. She drew a picture of a little girl eating her ice cream with watermelon on top and as I spelled them, she wrote Watermelon and Ice Cream Philanthropy. As often happens when we study a value, we tend to hear it everywhere. Last night while watching The Wizard of Oz, the wizard described philanthropy to the Tinman and was having trouble saying it. Both kids knew it and shouted it out. I think in the end I will include philanthropy. It's President's Weekend. If you looking for projects to do with your kids today, a short project on philanthropy, as described above would be fun. Write the word, define it, explain it, give examples, then allow your children to create their own philanthropy through drawing and writing. Be their guide and cheerleader.