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

Comments

  1. Linn, thank you for sharing. I'm so sorry that things didn't work out for Uncle Mark to live with you and your precious family. I'm sad to hear that there were so many difficulties and challenges with him in your home. Praying for all of you!!
    ♥ you guys!
    JR

  2. We Are Family says:

    Great post! Very good insight!

  3. Goodness and Mercy Mom says:

    Oh, Linny, thanks for sharing this. It breaks my heart that you have been going through this. You've had such a brave front on your other blog that I had no idea how devastating things had gotten.

    We have a family friend who had a son who was also mentally challenged. I think the mom felt somehow it was her fault that her son was disabled and indulged him as well. Not only was it not healthy for the son, the other children (all now grown) resented her and their brother because he got so much/they got so little of mom's care and attention.

    Your story is not only a great reminder for those of us parenting children with SNs, but for parents in general. We live in an age of wanting to make things too easy for our kids. It's so easy for families to become child-centered, instead of family-centered and God-centered. Catering to our children to the point that we are even afraid to discipline them. They grow up to be adults who are lazy, selfish, anti-God. Sadly I've seen this firsthand with extended family. Your discription of what happened when a child was allowed to be the center of the universe is a sobering reminder for all parents.

    I know you are feeling defeat and disappointment that things didn't work out with Mark. Perhaps this was a hard lesson on the right way to parent your children with SN. (So interesting that you got this lesson shortly after Jubilee came home.) I also think this was an Abraham and Isaac kind of test. You have shown that you are on the mountaintop with it all laid on the altar–your family, your home, your comfort, your future. God sent a ram in the thicket and provided another option for Mark.

    I'm praying for rest and healing for you and your family in the months ahead.

    Much Love,
    Kathie

  4. Stefanie says:

    REALLY well said, Linny. And it's not a pleasant subject to bring up, but SO needs to be addressed! Kids don't stay kids for long and it's OUR responsibility as their parents to help them learn to be Christ-like ~ serving others instead of expecting to be served ;)
    Thank you for sharing from such a difficult personal experience… your perspective is invaluable!

  5. The way I figure it is this. If you assume someone is flawed or unable, you do nothing to encourage them to be that way. If you assume someone is able (within physical capabilities), then they will become so, if they are taught so from the ground up.

    I am so sorry that this long dream turned into a nightmare. I hope that the change will make you able to enjoy some time with him later down the road, in visits, so that things work better. And you are right; so many people need to be reminded of this. Thank you so much for sharing such a personal story.

  6. As a mom to a young adult woman born with Down Syndrome, I agree. We have always expected our daughter to do chores, etc. We had the same behavior expectations for her that we had for our other children. As a result we have a wonderful 23 year old daughter that tries hard and is a sweet young woman that loves Jesus and looks for ways to serve. She can't do some things, but what she can do, she does to the best of her ability! As parents, we should expect and train our children to do the best that they can no matter what their abilities or disabilites may be.

  7. sierrasmom says:

    Oh Linny I know this whole experience has been heartbreaking for you. You will always know that you tried and the circumstances were out of yuor control. Imagine how relieved your littles are that they need not be afraid anymore. My tohgts and prayers are with you!!!
    Hugs
    Kathie

  8. I have always felt that no matter what- children should be treated as equal and responsible members of the family. NO. Matter. What. Everyone has an ability level, everyone can pitch in.
    There are people, who are close to me, in my life who do not agree. These same people are already thinking of ways to treat my son differently when he comes home. He has a cleft palate. Ummm, what "special" treatment does he need? None. He gets treated exactly like my daughter. End of story.
    Thank you for writing this. I know it must have been hard, but you are right, it needs to be said.

  9. Wife of the Pres. says:

    Linny, Thank you for sharing. I am so sorry for what you have been through. And sorry your dream didn't work out. What a profound thought that can be applied to so many areas of our lives.

    I wanted to share in brief that what you say is so true about NOT treating children with different abilities like Mark was … spoiled in a word.

    WE have a cousin who was born with Downs Syndrome. She is now 30 years old. She is a HARD worker, and has always worked to her ability. She was so popular and loved as the greeter at a local Sh*ney's restaurant that the customers were in tears when she had to finally quit since her back is in very bad shape. But she never complains and is always so grateful and the MOST LOVING PERSON I've ever met on this planet.

    Your post speaks volumes about how important our role as parents is … . Thank you again and hugs to you and your family.

  10. a Tonggu Momma says:

    How very insightful. Thank you so much for sharing this, Linny.

  11. Lillie's Mom says:

    Thank you for this great bit of honesty. I have a twin brother (39 yrs) who has CP and is profoundly developmentally delayed. So this strikes a chord with me…growing up my family saw many other families with special needs kids (even mild special needs) allowing their child to hit, bite and pretty much terrorize their homes, schools & neighborhoods. I believe a lot of it is based in a false sense of guilt. Sadly, this leniency can destroy families and can set up the special needs individual for a very hard life after their parents have passed away. When my brother reached around age 11 or 12 he began to rage at the rest of us. He is non-verbal and at that time he had a very hard time controlling his anger due to his changing body and emotions. (He is very routine oriented and dare I say "Rainman-esque"? In other words he is easily angered when he doesn't have his rigid expectations met.) As a family we had to band together to teach him how to handle his frustrations w/o hurting others. Needless to say I am so thankful my parents understood that it would only be to his benefit to teach him how to function in a family- rather than allow him to see the rest of us as people who existed only serve him, pity him and eventually live as his victims. He has also been taught how to do simple chores and is expected to do for himself what he can do. It's not always easy but it's always more loving to teach them what we can and empower them to function to the best of their ability in the community!

  12. Charlene says:

    Oh, Linny, amen, amen, amen! My dad passed away in 2004, mom in 2007. My sister is 33, MMR, vision and hearing impaired, and cp… Mom kept my sister at home (went to a day job at the ARC) and didn't really train her or expect too much out of her. Well, she was expected to be at mom's beck and call, but wasn't taught how to do stuff. We had her living here with us right after mom's death, then moved her back to the "family" home with sitters during the week and here on weekends. We finally had to stop that too. She was often annoyed at the children and had a hard time understanding that they were kids…. She raised her hand several times at my children–ummmm, NO WAY! She really didn't do chores or would act put out. It was a hard and guilt ridden process, but it is now the BEST thing we could have done all the way around. She lives in a subsidized apartment complex for mentally and physically handicapped people. She works at a new ARC. She also has a busy social life now!! LOL She bowls, goes to activities with her home health agency that oversees her caretakers and bills (AMEN!), and goes out to dinner every Friday night with friends. She is happy, the stress is off me, and she seems to enjoy her short visits now. All is good! I think you have done the best thing for your family. Thanks for sharing this message. It is one that really needs telling! God bless!

  13. Linny,
    I follow your other blog, so I know how just how excited you were to have Mark come join your family, and I can imagine how hard this has all been. Thank you for your comments on raising a special needs child with the "long view" in mind! Our son (from China) is deaf, and we work hard to make sure we expect the same things from him that we do from our daughter. You are right, we are not doing our children any favors by "coddling" them, special needs or not! My hope is that our son will grow up to love the Lord and to love others, and I know that we are laying the groundwork for that with each choice we make in parenting.
    My prayers are with you and your family as you walk through this challenging time with Mark.
    In Christ,
    Carla

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