eSpecially Ben

When I am tired and stressed, I make poor food choices, exercise less and begin an unhealthy cycle. A few weeks ago, I had a tough week. In my delirium I wondered what could be wrong with me. I easily forgot about the stressful events and experiences that changed my body rhythm, reeking havoc on my well-coordinated, scheduled and fine-tuned life. Monday & Tuesday - Handling the challenges of the Video/EEG was stressful enough without looking forward to four hours of sleep on one of those pull-out chairs in the hospital. Wednesday - Delirium set in and I attended a planning meeting with my co-facilitator for our leadership consultation on Saturday. Thursday - I attended Ben's annual IEP meeting. IEP meetings are stressful even when they go smoothly, which this one did. However, the results from Ben's psychological evaluation were revealed in the meeting and it was a lot to take in. I will share in another post. Then I met with the school PT and a medical equipment...

This summer has taken some getting used to - I think I may have mentioned it here a time or two. In an effort  to create some sort of a schedule, we started renting Red Box Family Movies every day. Tonight the boys are watching Free Willy while eating popcorn. Last night it was Beverly Hills Chihuahuas . It has been a relaxing way to end the day and spend time with each other. Another mom blogger recently wrote about how summer is a stressful time for parents with children with special needs. She mentioned how most other families lavish the thought of days filled with no schedules. For parents with children with special needs, it can be a challenging time. We are fortunate to have a therapeutic recreation division within our county parks and recreation department. They coordinate an eight week camp for children with special needs. The schedule includes weekly swim sessions, field trips, music therapy and gymnastics time. The ratio for the camps with smaller children is almo...

Since March 2009, I have been taking 1/2 of a Benadryl pill every night before bedtime. It all started that winter when we were horribly sick with colds, bronchitis and ear aches for months on end. Someone was always up at night. I got in the habit of waking at 3am whether someone needed me or not. I need sleep every night, at least 8 hours worth. I did one all-nighter in college using No-Doz and that was it for me - never again. If I did not get the studying done at a decent hour, well then it was not going to happen. Anyway, I began taking the Benadryl every night. I did not need it to fall asleep because I am usually zonked by the time I get to bed, but I did need it to stay sleeping. Well, March 2009 turned into March 2010. I thought about stopping, but the fear of not getting a good night sleep would take over and I would pop a half a pill, which is 1/4 of a full dose. My chest would tighten when the thought of trying to go to bed without one entered my mind. A mild form of p...

They look like how I feel. It has been a tough transition for me from school to summer. I play chauffeur for much of the day taking kids to and from camp. During the year, my goal is to get in my car as little as possible. The hardest schedule change has been that Sean, our two year old, has decided to stop taking naps AND he can climb out of the crib. Of course, Sean still needs the nap and his behavior reflects it. My world has changed dramatically. The precious time I had to myself in the past to get "stuff" done and recharge my batteries has diminished. One day, I will learn to change with the tide. I may fight it every moment of the way, but it will happen and I will eventually find peace. Perhaps. At least tonight is "Date Night."

This past week we found out that we were accepted to receive services from the state through a special program. We have been on the waiting list for many years, and we are so thankful that Ben's name finally came to the top of the list. It comes at a crucial time when we are feeling that his safety may be compromised if he is left alone and unattended for any amount of time. Our stress levels were beginning to stay in the "red zone" more often than not. The relief I feel now is unbelievable - a weight has been lifted from my shoulders. My mom had a taste of what it is like with Ben this past week when she visited. I asked her to watch Ben while he was in the bathtub. She sat not four feet from him, playing a game of Trouble with Ben's younger brother, Logan. Without anyone hearing him, Ben got out of the tub and was next to Grandma before she even realized it. Yes, he is that quick, agile and quiet. At least she knows I am not making up the stories I share with her....

If someone had told me that I would do the following things on the first day of the year 2010, I would call them crazy. Wake at 6am. Be outside in 30 degree temperatures. Wake sleeping children. Drive 90 minutes to run 5 miles up and down steep hills in the freezing temperatures with once sleeping children. But I did, and I do think I am crazy. Hair of the Dog was my first race of my 12 Race Challenge for 2010. The race was coordinated by a YMCA in another state, about an hour and a half south of us. I chose this race because it was the only one in January relatively close to our home - and it was warmer when I was planning this challenge. The race itself had about 100 participants, many wearing t-shirts from previous Hair of the Dog Races. This was the 28th Annual. It seems to be a big tradition with the regulars in this town. The course took us through beautiful neighborhoods with older bungalow style homes, a nature preserve and also crossed ov...

Turkey Trot 2009 * 5 Minutes for Special Needs , a blog I follow, had a posting last week about taking care of yourself. It basically said that we are so busy taking our kids to doctor and therapy appointments that we may overlook our own health. I do know that I need to stay physically fit as well as emotionally stable to handle the stress and physical work that is involved in raising Ben. I am fairly good about taking care of myself - I exercise almost every weekday, I read fiction to relax and get together with friends to unwind and share stories. It is sometimes a struggle to find the time to do the things I enjoy or even fight off the guilt of being selfish. I ran an 8k on Thanksgiving, not having run a race in more than two years. I forgot the enjoyment I got out of being with so many people also excited to be running. It was exhilarating. The best moment of the race was when I saw two kids pushing their dad, who was in a wheelchair. I wanted to say something positive to them,...

We had a great Thanksgiving. I ran an 8k in the morning, came back and we all jumped in the car to watch the last hour of the parade. We came home and ate pizza (really) and everyone except for Ben and me took long naps. Ben watched a movie, and I read a book. At 6pm, we went to our neighbors to pickup Thanksgiving leftovers, and then watched Miracle on 34th Street as a family. On the scale of holidays, this would have been close to a ten. But as they say, this too shall pass. By Friday night, something had taken over Ben. He started with his high pitched yelling, which we had not heard in a very long time. When the yelling starts, it is non-stop, loud and pierces the inner depths of your being. In addition, Ben was climbing, grabbing, kicking and out-of-control. His appetite was unending, eating ridiculous amounts of food and drinks. The items “Benzilla” left in his wake: a broken toilet tank cover, Balmex on the dresser and rug, near crash with my Christmas dishes and an almost ...

I am not talking about sugar-free candy, no calorie cakes or eating your way through the holidays with celery and carrot sticks. I am talking about getting rid of the pressures we all put on ourselves to have wonderful, perfect holidays for our families and children. There are ways to make life simpler during this hectic time. Most of us avoid them because it may mean taking a risk and changing the way things have always been done (and our mother might yell.) Here are some ideas that have worked for us: Gifts – I know for our son, Ben, who has little interest in toys, finding presents for him to open during the holidays is a challenge. The little voice in my head keeps saying, “What will Ben open? What will Ben get excited about?” Changing our expectations of Ben being excited about gifts helped quite a bit. We ask grandparents to pay for tickets to the circus, which unexpectedly has become a tradition. Some of the best gifts for Ben are movie passes and gift cards for ice cream...