AT A GLANCE
Jeff and Lisa had a set of boy and girl twins in 2001. Their little girl was a thriving, healthy child who has grown to be a bright, successful, able-bodied teenager. Their son’s development took a different path, which has been filled with many twists and turns. Lisa and Jeff have followed this difficult path with their son, Max, caring for him in their home and quietly sacrificing for his benefit all along the way. This couple has navigated a world of hospitals, health insurance, and economic disparity along with sheer physical and emotional exhaustion for 16 years. Now, Max is a strong, growing and very severely multiply handicapped teenaged boy and this family is at a crossroads. They find themselves in a situation that they cannot solve through their own will and self-determination. As friends of the family, we are reaching out to strangers that may be able to help this hard working, well-meaning family make their life manageable as they raise their handicapped son at home. If you think that you may be able to help this family in any way, please take time to read their story as well as his twin sister, Camille's "A Day in my Brother's Life" located at the end. Contractors, care givers, trades-people may be able to help this family make it on their very rocky road.
WHO IS MAX?
When Max was born he was a cuddly, very small little guy with a super sweet disposition, but his development was not moving on schedule. Max was not achieving his childhood milestones. He was not tracking objects, babbling, sitting up, crawling, eating table foods, standing, walking, etc. Doctors diagnosed Max with a developmental delay and encouraged the family to pour on early interventions to help Max develop. Lisa and Jeff gave Max every medical and educational intervention that could help him, but Max’s response was very slow or not evident at all. Despite the family’s dedication to Max, his problems snowballed over the years. Currently, the University of Michigan Hospital has a list of about thirty diagnoses for Max including, mental retardation, epilepsy, cerebral palsy, autism, failure to thrive, feeding disorder necessitating g-tube feeding, apnea, vision handicaps, absence of ALL communication skills (not talking, no signing, no understanding), pneumonia, dysphasia, sleep disorders, and the list goes on. Jeff and Lisa decided long ago to raise Max at home instead of a publicly funded nursing home. At home, he would be raised in a loving, nurturing environment where he can flourish the most.
Lisa supports the family as a devoted, full-time public school teacher. Jeff, who has a degree from the University of Michigan, chose to give up his profession to be a stay-at-home parent for Max. Giving up Jeff’s income was not in the family’s plan and has been a very difficult necessity. Since the age of 11, Max has had seizures, which have resulted in a loss of mobility. Given the fact that Max is now a five-foot, 105-pound teenager, Jeff and Lisa are no longer able to physically lift, move and transfer Max throughout their home and to a vehicle.
Jeff and Lisa live in a colonial style home with the bedrooms and bathrooms located upstairs. Now that Max is over 100 pounds and is not mobile, it has now become impossible to get Max up the stairs. Max now sleeps in the dining room, which shares a wall with the kitchen making it very noisy. The family often “hides” upstairs to allow Max to sleep. Their meals often consist of microwave dinners in an upstairs bedroom. Their short-term solution for bathing Max on the first floor is in the laundry room in a Rubbermaid tote. Max and the volume of water together are now too much weight for the totes. They have to dig his slippery, thrashing body out of the tub at floor level, which is dangerous for Max as well as the caregivers due to water all over the floor.
As friends of the family, we are reaching out to strangers, that they may be able to help this hardworking, well-meaning family make their life manageable as they raise their handicapped son at home.
They would like to stay in their current home to allow Camille, their daughter who’s now in high school, to continue being with her friends and support group.
A local foundation began raising money to help start remodeling their home. This foundation has since merged with another organization and is no longer supporting Jeff and Lisa’s cause.
In order to stay in their home, the necessary renovations would include:
· Totally handicapped accessible bathroom, complete with roll in shower
· First floor bedroom or turning the dining room into the needed bedroom with soundproof walls and room darkening window treatments
· Front door widening with a ramp
· A handicapped accessible van for easier transportation
· Finishing the basement to make a family room so Lisa, Jeff and Camille could have a place to invite friends and family since Max takes up the first floor living space.
Despite his serious health issues, Max continues to thrive and is expected by his parents and by the State of Michigan to reside with his mom and dad until he is an adult or longer if this family can make that work. Lisa and Jeff are smart, loving, hard-working, tax-paying people that have quietly self-sacrificed for 16 years for their very special son to flourish in their home. They have very privately, put their nose to the grindstone and worked hard to raise their children, pay their bills and to be good citizens. Fate has given them a very tough road. They have accepted their road and are driven by their devotion to their special son to keep on working hard for him until they can no longer do so. They have never wanted to ask for help, but they need it! As friends and colleagues of Lisa and Jeff, we are seeking help on their behalf. Thank you for your consideration of this special family’s situation.
Cathy Karlson and Sheri Fortier
A Day in my Brother’s Life
Don’t get me wrong, I love my brother very much and he’s a very important part of our family. He is so innocent; we know that he couldn’t purposely do anything unkind to us. This is what makes us so happy that he is in our lives. But, it doesn’t mean he makes our lives easier.
Max needs a lot of attention. He needs at least one adult tending to him at all times. Two adults are needed for all daily tasks like changing his diaper, bathing him, putting him to bed, and getting him up stairs. We need two adults because Max is so big, strong, uncooperative, and unpredictable. Sometimes, Max is just downright wild. This is hard on my parents who may be trying to lift him into his bed. When he bucks and yells, it hurts their bodies. My mother has both knee problems and foot problems from lifting Max. My dad does most of the heavy lifting so he has hip, back problems and knee problems and sometimes gets injuries. They are falling apart!
Here are some highlights from a typical day in the life of Max:
Here is my brother waking up in his netted hospital bed in our dining room. Even though he takes sleep medicine, he wakes up a lot during the night and then he has to sleep in until eleven a.m. or later to get enough sleep. Shhh! We have to be very quiet to let him sleep. Because the dining/bedroom is right next to the kitchen, we run fans for white noise, whisper and tiptoe around and we can’t use the microwave or any other beeping appliance for hours.
This is me eating breakfast (please excuse the hair). To keep the noise down, we have converted my old upstairs bedroom into a make-shift kitchen with a mini fridge and a microwave. This is where we all eat breakfast every day.
Max is learning how to use a commode, which is cool since he has been in diapers his whole life! He sits on it for a long time in our kitchen because the floor is tiled there and he can play with toys. This is really embarrassing for my friends to see. Even when it’s just the family at home, this going-to-the-bathroom-in-the-kitchen thing is gross. He really needs a handicap bathroom!
Here is a picture of some of Max’s special equipment- a sling lift, 2 wheel chairs and a bunch of other stuff. We keep all of this in our living room because there is no other place to put it. We need a closet or something to store Max’s equipment.
Another thing my parents need to do, is lift Max into – his Rubbermaid tote bath. He likes it, but this is the biggest tote they sell, and Max just keeps getting bigger. As you can see, the tote bath can only be used in the kitchen or the laundry room because they are the only rooms that have tiled floors and because we need to empty it with buckets until it is light enough for my dad to lift and empty into a sink.
Max really needs a bedroom and handicap bathroom of his own. That would make his life so much better. But Max wouldn’t be the only one who this would help. If it was a little easier for my parents to take care of Max, we would all benefit. My parents wouldn’t be so tired and stressed and their lives would be happier. I am really worried about how my mom and dad are going to take care of Max as he grows, even in a year when he is 16. It breaks my heart to watch them struggle like this, giving everything to Max - more than they can afford. It is so unsafe! We can’t do this anymore! Max needs help, but so do my mom and dad. Max and I need healthy parents to help us as we grow up. Hoping you can help us!