Parenting Special Needs - Real Life

Recently our family had an experience that will forever be etched in our lives. It involves an adult with special needs…..and since we who parent children with special needs are raising children who will grow into adults with special needs, I feel strongly that this must be shared here. I don’t feel I can share it on my blog, but wish I could but there are too many people who know all the parties involved and the last thing I would want to do is hurt anyone. But I am sharing some very honest stuff about our lives here in hopes that it will encourage all of us who parent special needs kids. It is our story, so I am making myself and my family very vulnerable.


First a little background. My husband, Dw, and I have been married for almost 32 years. We are very, very, very {did I say “very”?} happily married. We have a blast together. We are soul mates. We have ten children. Three have grown and left the nest. Seven remain at home. The seven at home range in ages 3 to 16. We are abundantly blessed.


Dw was raised in Western New York, the youngest of four boys. My husband Dw is 55 years old. His oldest brother, Mark, is 70 years old and mentally handicapped. Let’s just say that from the time Dw and I were first married we planned that one day, Mark would come to live with us. It just seemed natural. We are family and we care for each other. Period.


We lived for the first 13 years in Western New York so we saw Mark regularly. If we went home to Dw’s parents we always invited Mark along to join us in whatever we did {things like go to the drive-in, get ice cream, etc.}. We would call and talk to him on the phone. We loved him greatly. We talked to Mark over the years….”when something happens to Mom and Dad you can come to live with us”. He was always eager at the thought.


Eventually we moved out of state and years passed. My in-laws got older and so when we were looking for a home we would always plan which room Mark would have one day. My father-in-love died 2 years ago at the age of 95, he was a very gentle, quiet man. This past January 2nd, on the anniversary of my father-in-love’s death, my mother-in-law had congestive heart failure and suddenly the reality of what we had been planning almost our entire last 32 years happened. We talked to Mark on the phone, yes, the time was right….he wanted to come live with us.


Dw flew to Western New York within days and before long he arrived home with our long-awaited Mark. Their flight arrived late at night and so I was the only one up waiting when they got home. When I heard them on the front porch I threw open the door and was squealing and jumping up and down, “You’re here, Mark - you’re finally here! Welcome home!” The kids were just as excited as we were. We have been preparing all of them that one day Mark would live with us.


Now the reality: Obviously we are a big family. Everyone has chores to do. Everyone has to pitch in whether you are three years old or sixteen - you pitch in. Even Elijah, at 3 years old, can get himself something for breakfast {as I keep an eye out for him}. He can fold clothes. He can put things away. He attempts to sweep. Chores the kids do: clean bathrooms, vacuum, sweep, do dishes {we don’t currently have a dishwasher}, put dishes away, etc. Everyone helps. Everyone. We make it fun when we work alongside each other and before long the house is pretty spiffy looking! It doesn’t last long – but those few moments of cleanliness are so appreciated by this mama! Our kids with special needs work right along with everyone else.

So the first morning after Mark arrived he came down and sat at the breakfast table and barked, “Get my breakfast!” I thought, “Uh-oh, this might not be the picnic I was envisioning.” Ugh We knew that my mil had given Mark everything he had ever wanted. She had waited on him hand and foot. If his bed wasn’t made by her in the morning he would refuse to go to bed at night. She was 93 years old and climbing the steep stairs in that old farmhouse to make Mark’s bed so he would happily go to bed at night. We had foolishly believed that when Mark came to live with us he would adjust and settle in. Not so. He began very quickly to make life very miserable. He had been waited on his entire life and he expected to be until he died.


I quickly realized what a monster had been created by my indulging mother-in-law. Surprisingly, she had not done this with her other three boys. She had actually largely ignored them. But Mark was the “special” one and I’m guessing she felt that since he was mentally handicapped life “owed” him an easy ride.

Mark soon wanted to go home. We explained that he would not be going “home” cause there is nothing to go home to, but that he would be going home to a group home or an institution. He wouldn’t believe us. {My mother-in-law is in a neighboring town about ½ hour away in a nursing home.} As the days passed, Mark would argue and complain {loudly} about anything that didn’t go his way. He would lie often. It was exhausting. I told Dw that at 51 and 55, “It would be easier to adopt quintuplets then to care for Mark!” {I wasn’t kidding.}

The whole point of this post is to challenge anyone with special needs kids not to allow them to believe that because they have special needs they are “owed” a life free from responsibilities or accountability. My intent is not to bash my mother-in-law for how she raised her son, but to be honest about the consequences of our parenting – they are lifelong!


We are convinced that had my mother-in-law held Mark accountable and required him to have chores {even chores he didn’t think were fun} she would have been better preparing him for life without her. If she had held him responsible for his lying she would have been making him a responsible adult. As it was Mark was allowed for 70 years to believe that he was at the center of the universe. What a shocking blow for him to find out otherwise and what a shock it will be when he goes to live in an institution or group home.


Mark eventually got aggressive and almost what would be considered violent toward our little ones - I was completely shocked!! A 70 year old man, mentally handicapped or not, knows all about hurting others and that he would purposely inflict pain on a little one - deplorable!


Dw came home from work and said, “That’s it. He’s gone.” I was thankful and relieved. It took awhile to get all the details worked out and over the ensuing weeks there were two times where I had to tell Mark that if he didn’t knock it off I was going to call the police. It has been a very difficult time, needless to say.


My husband, Dw, left for Africa in the wee hours of this past Wednesday morning. He took Emma {16} and Graham {15} with him. Mark was scheduled to leave on Friday. That left just all day Wednesday and all day Thursday with me alone with Mark and the little ones. It was two of the longest days of my life. He, again, got violent toward one of our little ones – because they sat on the end of “his” couch while he was watching TV. I had to keep them away from him - completely. He was belligerent.


Yesterday morning Mark left for good. Dw and I both have had to struggle with what all of this meant. We had dreamed of this for almost 30 years - but often dreams aren’t reality – in fact they can be nightmares!! We have had long talks. I had to realize just how frustrated I have been at my mother-in-law for her parenting choices. It has been a time of soul-searching and praying that I can be a parent who raises responsible adults that when presented with circumstances that don’t go their way, they respond with grace, integrity, humility and thankfulness. I pray that our painful experience will allow all who read this to look at their parenting choices as well.


Sincerely,
Linny @ A Place Called Simplicity