An email was written to my husband this week asking for advice for someone in his church who had asked for help. This person is disabled and is trying to raise her children. She is finding it very difficult to manage her children because of her disability. I certainly understand her plight!
Can we rewind about 9 years? I was newly paralyzed. I couldn’t even take care of myself, let alone take care of my 6 children who ranged from newborn to 10 years old. I will never forget the day my sweet little Macey, who was barely 2 years old, was being very naughty. I told her to come to me and so she ran the other way!! I wheeled myself to find her and she had squeezed her little body between the wall and the refrigerator. I could NOT reach her!! My arms weren’t long enough and I couldn’t stand or get in any other position to reach her. I thought right then….”THIS is going to get interesting!”
My family about 4 months after I was paralyzed in 2009
One thing that was extremely emotional for me in the early days, was that I just wasn’t going to be able to be a good Mom anymore. A good talking to by my hubby one day got my head on straight. He told me that the greatest thing a mother can give their children is love and that my disability did not break my ability to love. He was right. Once I got my head around the fact that I could still be a good Momma to my crew, I decided that no one else was ever going to take my place – not my hubby, not family members, not church family, and not caregivers. I was their Momma and they needed me…disability or not. All of these people help me, but no one replaces me.
Since we were written for advice, I thought I would just make it a blog post in case there are any others out there who may want my two cents about it.
- Your Word Must Have Final Authority
When you are limited physically, your word has got to carry power. I would have this vision in my head of rolling along a sidewalk, unable to hold my child’s hand (because I need my hands to wheel myself) and my child would break away from me and run towards the street. In my vision, I could see myself rolling as quickly as I could to catch them, but then what? How could I steer myself or stop myself or control my chair with my hands if I was grabbing at my child? How could I stop my child and not myself? How could I grab my child and not fall out of my wheelchair? ALL these horrifying visions made me determined that if I told my child to stop, that they would obey me immediately.
I took that vision to heart and I would seriously sit on my front porch with my younger ones and tell them not to get off the porch. I would sit near the porch entrance and pretend I was reading a magazine. If they got one little toe off that porch, I would sternly correct them on the spot. Again, I would pretend I wasn’t watching, and they would test me to see what I would do. Every single time their disobedience was dealt with immediately. There was not an ounce of inconsistency. I needed them to know that when Momma spoke, she meant it. I needed to know that when I spoke, they would be safe.
My word had to have absolute power because my body was no longer capable of rescuing them.
I don’t think I can stress this first point enough. Thankfully, we have always believed in being obeyed promptly by our children and so I was already of that persuasion. However, it is REALLY easy to get lazy and inconsistent with children because you are outnumbered and it gets really weary day after day to be a consistent disciplinarian.
My disability no longer awarded me the luxury of being lax in the discipline of my children. Truly, their life could have easily depended on my consistency in this area and I very much took that to heart.
You may be asking what enjoying your children has to do with discipline? EVERYTHING!
I would definitely say that I am a firm disciplinarian. I don’t take much lip, disrespect or attitude from my children. I am Mom and I will be respected. However, I have seen SO many firm disciplinarians that seem to truly dislike their children. They act like their kids get on their last nerve, they are hateful and grumpy, they are forever pointing out all of their faults and talking to other people about them, they can’t wait till they “finally go back to school”, and they discipline their children in front of everyone! It always hurts my heart when I see these things.
I have also heard people say that you cannot be friends with your children. They say you must be parents and not friends. If they mean to never be a voice of authority, I guess I can see what they mean, but I wish they would just clarify that instead of saying you cannot be friends with them.
My children are my dearest friends. They make me laugh. They help me. They love me. They forgive me…oh how often they forgive me! They worry over me. They fuss over me. They are SO funny! They are kind. They are compassionate. They are smart. They are witty. They love Jesus. They compel me to be a better person.Why in the world would I NOT want to be their friend? They are amazing individuals and I am SO blessed to be able to not only be their friend, but to call them my children!
If I ONLY ever wear the “I am the Mom – your boss, critic, guide, disciplinarian” hat, my children would have a very hard time not resenting me or being bitter towards me. Who likes people who only correct you?
One of the blessings of my disability is that because I use a wheelchair all the time, my lap has been available most of the time. Especially when my children were little, it was always available for a quick sit, or cuddle or hug. Another thing that my disability has brought me, is that I have times when I must rest. Those rest times have proved to be wonderful times to watch cartoons, read stories, lay and giggle together, or even cuddle up and take a nap. I learned to embrace those opportunities with my children instead of getting frustrated at my inability to be up and getting things done.
The point of this point, is that many times, the frustrating parts of our disabilities can often be the very thing that can give us more time to bond and love on our children which blooms into precious friendships.
My children are now between the ages of 8-18 and I promise you that those years of much time spent together because of my LACK of ability, have been so rewarding. They are growing into fine children and I am crazy about them. I am pretty sure they are about me too.
I mentioned this a little above, but want to make sure it isn’t missed. I worried early on at the lack of physical things I wouldn’t be able to do with my family anymore. We LOVED hiking and state parks and creeks and trails and playgrounds and historical homes. All of those things are very much NOT wheelchair accessible. I loved everything active – volleyball, bike riding, basketball, trampolines, tree climbing….stuff I thought was over forever.
How would I ever be able to be involved with those things?
Have you ever just sat and watched children play? Have you every counted how many times they say “Hey Mom!!! Watch this!!” I realized that my kids needed my presence more than they needed my involvement in that activity. They needed me to be cheering them on, asking them to do it again, challenging them to something just a little bit “riskier” or acting like I was scared to death. They needed my quality attention and they needed my quantity of attention. That is what they needed MORE than they needed my actual involvement.
Don’t get me wrong, there have been plenty of things that I have tried because I wanted to try to be involved, and there have been times I would have rather been home in bed, but they needed my attention. There have been times when I wanted to try something, and they begged me NOT to, and there have been new things we have learned to love to do as a family that we never did before. There are some things we truly cannot do much of anymore because I can’t be out in the heat or cold that long, or because there is physically no way to get my wheelchair to certain locations. There are some things I BEG them to please go and do without me and I will wait (like to hike on down to that waterfall), and there are other times they all refuse to go and do unless I can do it with them.
The point? Our kids need our presence and plenty of it. Our disability does NOT stop that and shame on us if we let it.
Now that the philosophy is behind us, what are some practical tips? I am a full-time wheelchair user so my tips may look different from those with different disabilities.
- Keeping Them Safe With You
Help Push You
With my little ones, I used to ask them to “help push Mommy” to keep them hanging on to my wheelchair without them always realizing they were staying with me. Children LOVE pushing wheelchairs, and my kids have always had no issue staying with me when they are “pushing Mommy.” Sneaky right? Having said that, I always had someone else with me (other adult or older sibling) when out in dangerous areas like parking lots or near roads. I never wanted to risk their chance of disobedience. But…I also didn’t want them to know I had that backup because I wanted MY word to stay with me to have weight.
Use A Child Safety Leash
In safer places, like a mall or indoor area, I had a child leash that I would put on them and attach it to my chair so they could feel they were a little more free but I knew they wouldn’t get away from me. It enabled me to use my hands to wheel myself, and keep them in my sight.
Use A Therapy Belt
The little ones also rode on my lap quite often and I would use a therapy belt to help strap them to me. This kept them from sliding off of my lap while going down ramps or over bumps and it also kept them sort of restrained from constantly fidgeting away from me. A power chair was easier to keep them on my lap than a manual chair as I could keep one arm around them in a power chair. If you have limited arm strength, then a belt helps keep them in place.
Do The Opposite
I always ask myself “what are they trying to accomplish by not being good right now” and then I would try to find ways to do just the opposite so that they would never gain or be rewarded by that negative behavior. For example, if they were not wanting to stay with me when I said, they now had to sit on my lap and could not get up at all. If they were asked to do a simple chore and had a bad attitude about it, they now had to do two chores. If they are argumentative and can’t get along with anyone when asked to, they can now go to their room and be alone. If they can’t play well together, they can now just take a nap. If they break something that belonged to someone because they were mad, they can help do chores for that person to pay them back. See the idea? Instead of getting what they were trying to accomplish, they got just the opposite. This takes some creativity sometimes. Of course, this doesn’t always work, but for the most part, it has been pretty effective.
Take Away Their Favorite
Whether spanking is your thing or not (not abuse, but a spanking), not everything needs a spanking. We do believe spanking has its place, but we think it ought to be for the most serious offences of all and used very wisely and calmly and not when angry. We refuse to bully our children and many times spanking is nothing more than an adult bullying a child in anger. I think that is disgusting. Spanking should only be a part of loving discipline for the times when every other discipline is not working. That is my opinion and this is my blog so….:)
I learned that many times, taking away something they loved hurt worse than a spanking. If they loved TV time, they lost it. If they loved video games, they didn’t get to play for a time I chose. If they loved their phones and texting their friends, they lost that. If they wanted to go somewhere, they stayed home. If they cried over candy, they didn’t get anything sweet that day. If they were hard to get along with all day, they went to bed early before anyone else. Actually, there have been times our kids have asked if we would PLEASE give them a spanking instead of one of these things!
I am convinced that information + application = transformation. I think the book of Proverbs in the Bible (which is the book of wisdom) is saying this when it often talks about knowledge and understanding equaling wisdom. I don’t want my children to do just DO what I say (although prompt obedience is important). I want them to also understand why I am saying it so they can apply that to their hearts. This will help them their whole lives and not just that moment.
Now, my children will tell you that I talk WAY too much (and I know I do); but I would rather be guilty of that than just barking orders at them “because I said so.” My friend, Brian, who is also paralyzed told me that he believes that the less we are able to do physically, the more we need to teach. I think he is right.
Teach through positive things our children do
“I LOVE the way you took time to help with your little brother. Did you know you are going to make a great dad some day being patient like that?”
Teach through negative things our children do
“How would it make you feel if your friend didn’t want to play with you? Would that make you happy or sad? Isn’t the golden rule to treat others like we want to be treated? Do you want to make your friend sad? How would Jesus treat your friend right now?”
Teach through their heart-breaks
“I know you are hurting. It hurts me to see you hurt. I can’t take your pain, but I am here for you and will always be here for you no matter how old you will ever be! It is wonderful and very important that you do right – even when you don’t feel like it.”
Teach through their joys
“I am SO proud of you!! You have done a great job! God has given you such a gift and talent to accomplish that so let’s thank Him for using you to bring Him glory.”
Teach to ask forgiveness
“Kids, I am trying to be a good Momma, but I am learning how to do that just like you are learning how to be good kids. I mess up and so do you. Will you forgive me for messing up today when I __________________________?” We don’t say “I’m sorry.” We say “Will you forgive me?” This is biblical. We must lead by example. Trust me, they know we aren’t perfect and mess up so we might as well admit it to them and ask them to forgive us.
Having a disability brings SO many insecurities and parenting is just one more. Children do not see or understand our insecurities. They won’t even know we have them unless we tell them. If we become a victim or martyr about everything, they will too. If we think less of ourselves, they will think less of themselves. If we talk bad about our bodies and disabilities, they will look for all their flaws also. If we constantly say “I can’t”, just give it time and you will be hearing that from them all the time. If you use your disability as an excuse in life, they will find something to use as theirs.
Our children follow our lead. We must lead them to become responsible, independent, productive citizens in this world. Our disabilities are a platform to teach them that no matter what they face in this world, they can handle it with confidence and creativity.
In conclusion, parenting with a disability can feel overwhelming and impossible if you only think about it from the physical standpoint. But the physical side of parenting is so minimal compared to all the rest! My children are the only treasure I possess that I can take with me into eternity. You are the only Momma or Daddy that child has, and that is what you will always be to them. Be the best there is!
You’ve got this!
My family this past Christmas – 2017