Discrimination begins in the family~

As many of you know my job requires that I “council” or emotionally and mentally support others living through trauma or tragedy. Sometimes this can be a challenge. I am learning very quickly how different each one of us can be. What might work for me, may not work for others. Honestly, it can get very tricky trying to find all the right words of wisdom when dealing with certain people.
I have not come across anyone who I haven’t gotten along with, every single client I have had so far we have bonded into a well respected relationship. Having lived this well travelled road of Spinal Cord Injury recovery, life has taught me many un-desired skills some of which could never have been predicted. To some of my newer clients having recently been introduced to this world may not see my advice as clearly or maybe even comprehendible. It’s hard at times, to look at them and say, “Please, just trust me with this”. Especially when it goes against their own morals and idea’s of faith and religion~

One of the first lessons I learned when parenting a young man with a Spinal Cord Injury, in which this was probably the longest taking lesson to learn was he is an individual human being. He is not attached to me, and will have his own ideas of what his life will look like for him.
This goes back to the very beginning. The day we give birth to our brand new, perfect bundle of sweetness. We consume our thoughts with everything wonderful, he will play hockey, he’s going to be kind, well respected and go to church every Sunday. He is going to be a top honor student, have a girl friend, marry his high school sweetheart, succeed in his career an have 2 beautiful children. Life couldn’t possibly be any better. This is possibly the closest to my set of dreams for my son. When your child reaches about the age of sixteen they begin to develop a sense of lets say “freedom and independence.”
They begin to drive, start part time jobs, hang out with friends, girlfriends, parties and planning takes place for future education. The one thing you as parents may not see or witness are things that also begin to change the future of our young men. They become individuals, with likes and dislikes different from your own. They reach out for sexual relationships exploring the world of sexual maturity, all of which is a normal transition into young adulthood. They may seek out new religious groups possibly different from yours. Maybe they don’t feel the need to achieve high marks and want to take up guitar lessons and join a band. Futures are theirs, realistically all we can do is give them all the resources they need to start on their own life journey. Its up to them to find their way, we have no control over that. We can support and educate and hope they find their own way to their definition of happiness.
Accepting that is one of the hardest lesson’s for a parent. Trust me when I say, it took me a very long time to understand this. None of what my son was choosing as some times in his life was what I had potentially had planned for him. Nor was it things I had agreed with. NOW don’t get me wrong my friends everything he was doing was exactly the same sh*t his father and I as well as all our friends were doing at his age. lol
So, being fair to Braden I have to go on to say he has always been a very level headed young man. He finished highshcool, went on too College, continued on with physical therapy, maintained friendships, volunteered with peer supports through SCI association. He was even a member of the City of Cambridge teen council bringing information and accessibility to teens in our community. He was certainly not lacking in future goals, and I was never ever concerned of his life path. There was only one time in which we were worried about his mental health, and as parents we took the appropriate action and by the grace of god he followed through on his own to gain the tools needed to help him through that time.
So lets go back~
I have been meeting with a mom who has a son with C4 Spinal Cord Injury, he is 2.5 years post injury. He is 25 Years old, graduated highschool and was pursuing a decent career. He had many friends and was part of club that provided him with friendships based on the same interests. (Keeping this information very general inorder to protect their identity). They are a happy family with other children, all grown. This is still all so new to them and they have a very positive outlook on this change of course for his life. This mom finds her son to be “her rock” and “her reason for getting up every morning.” He has been keeping her strong, and she is very proud of his positive outlook and personality.
She was very pleased to tell me about their set up at home for him. He has his own “apartment” downstairs. He seems pretty happy with his independence and own space but still is content to have his parents under the same roof. I had then asked her about a separate entrance for his friends or girlfriend?. She said at this time no, there is no separate entrance but will certainly look into that for the future.
She had asked me a bit about Braden’s .weekend routine. We eventually realize that our once carefree weekends turn into attendant care hours. The injury doesn’t disappear on Saturdays just because we deserve a much needed break. This my friends I think is the one thing that most families struggle with. It tends to be a common concern when discussing life after a Spinal Cord Injury. If your child/spouse or friend cannot do a transfer independently then how do they go to bed on a weekend without you having to stay up until they are ready? It doesn’t matter that you are tired or you had a long week, not feeling well or want to just go to bed early. You have to be available, and that can take a toll on anyone.
I shared our ways with her, and some of the things we do on weekends. I told her to teach his friends how to put him into bed or hire privately. She wasn’t comfortable with the idea of friends putting him to bed, but I made it clear that its up too her son and his buddies to figure that out. She really doesn’t need to be concerned. We as mom’s and caregivers tend to take on a lot of what their concerns would be. Things that really are out of our control. That’s the part of being a mom, we want everything to be perfect for them…no struggles~ So instead of just trusting that his friends can get him to bed safely we stay up until 2am just too see them tucked in.
She seemed a bit cool about that, I could tell she wasn’t sure. I had said, well if his friends come over and play video games and have a couple drinks they shouldn’t be going anywhere. I had suggested they have some place for friends to sleep for the night if drinking occurs.
Once Braden turned the age where he and his friends were starting to drink I found it very difficult to be available to him. It was actually Braden who told me too leave him alone, and too stop worrying. He said if his friends put him to bed when he is drinking, if he makes it in the bed without incident then its a good night. But if by chance they are just too intoxicated and he ends up on the floor…then that’s his choice.
This is an example of things that had to be tolerated when every thing in my soul was screaming NO! The reason is simple.
Like I had mentioned up above, when our kids become a certain age they seek out new adventure and in most cases this includes drinking, partying and having a good time. Most parents don’t have to witness this behaviour, its easy for them. If we don’t see it…it isn’t happening. YA RIGHT!
Don’t you think for one moment if you have a teenage son or daughter they are not at least experimenting with alcohol. Look at the course of history, it is something every single generation has done since the beginning of time. Most of us do it, and then become parents and expect our own children not too..lol

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So this is where the problem lies for parents like myself and Paul as well as my new found friends.
We have to see it….its that simple. Sadly, our young adult children are not capable of going off to someone else’s home when the parents aren’t there to drink and party. In most cases their friends homes are not modified or accessible for wheelchairs. This either leaves your son or daughter out in the cold, stuck at home every single Friday/Saturday night. Over the course of time my friends this will cause some serious mental health problems for your child.
My point, it is a natural progression for children to seek out companionship in core group activities who share in the same interests. Its only normal for young adults to want to be with friends and have a good time. Not only is it normal but its also necessary and healthy.
I remember working with a very seasoned psychologist when we were dealing with this issue. For my new client this was something she couldn’t fathom., she just wasn’t able to conceive the notion that her son could be entertaining his friends socially in his new apartment. Even though it was his space she just couldn’t comprehend her son having some drinks in her home.
As parents we forget they are just being normal, happy 25 year old men. The one thing that is very difficult for parents to accept is that even though we may not condone this behaviour in our homes, they have the right to make their own choices. Even if its in your home, because unlike all the other guys who can get to other people’s homes or even clubs the person in the wheelchair may not have access. It may not be an option.

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When we were choosing to look the other way when Braden was under age drinking with friends, the psychologist we were working with reassured us it was going to be ok. He made it very clear that it is something we have to be fair about. If Braden was able bodied he would have found a way to get out with his buddies to have some beers and party. It is a natural progression of growth and maturity.
Blindly going into this we did our best under the circumstances. We allowed his friends in our home on some weekends, they respected our quiet policy the best they could lol. They were always appreciative of Paul and I, and we rarely ever had any problems. They were definitely a good group of kids. I suppose really I should have been thankful they were in my home, at least they were safe, we knew where they were and technically we had control over the situation. Honestly, it was a very trying time for us. We had to give up a lot of our home, space and time to accommodate Braden during those years. Looking back now, I wish I would have known that it wasn’t going to last too long. The phase passed, he did start going out with friends and taxied home. Usually a friend would spend the night and put him into bed. Today he is a well rounded, social, happy young man who managed to experience just as much as the average able bodied person.
It was a sacrifice for Paul and I, it went against everything we believed in as parents. But now we are through that time and happily on the other side and I know we made the right decisions regarding the drinking, friends and partying. If we would have sheltered him, kept him from those experiences I can guarantee you this…he would have been a very angry, bitter depressed young man with absolutely no social skills.

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Balance is the key to growing up healthy, in every single aspect.
What this mother has to recognize now that her son is living in her home, is that he is an individual and before his accident he was more than likely enjoying his life like every other 23 year old man. If she starts to judge him, or try to take away those freedoms he will become angry. Even though she may not agree with it, it is still his life. Very difficult to understand when you are a full time caregiver.
When we touched on the topic of girlfriends, she stated “we haven’t had to deal with that”. This led me too believe he probably kept most of his female relations outside of the home. This mom would have not given it a second thought as too where her son was spending time with his girlfriend. Certainly they would have had their way’s to be together, they are healthy active young adults. Guaranteed they would have had a routine set up to have “quality” time together. This is something parents of “able-bodied” don’t ever have to consider. Once again my friend if you have a breathing, happy, well-adjusted teenager who has a significant other you bet your sweet ass they are exploring one another.

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I asked this mom if she has given any thought to a girlfriend spending the night with him. She responded with “no”, I then explained our first experience with a girlfriend spending the night. How it was seriously one of most terrifying parenting moments of my life. Paul and I had to once again keep our noses out of his business. Well, I mean we did have some rules in the house. Some of which were broken by one of his girl friends.
All I could think of was how this young man was probably wondering exactly how and when he was going to have another night spent beside a young lady.
Let’s be honest here, most young men and woman are sexually active. Now if you do have a child who does not want to have sex before marriage then that is great for you. However sex is not just intercourse, and every single young person is wanting some form of comfort and human connection. Just because this young man is now a quadriplegic, doesn’t mean he isn’t craving connections from the opposite sex.

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I told his mom exactly how trying it was to know that a girlfriend was spending the night, and how we had to “look away”. I understand if you are having trouble envisioning this, I mean it wasn’t easy for us either. Once again we found ourselves justifying a behaviour we didn’t necessarily believe in. We also had a younger teenage daughter in the home who was witness to the flexibility of rules. Communication was the most important coping mechanism available to our family.
I’m not sure how things would be different in our home if Braden wouldn’t have been paralyzed. In my home growing up my dad was very strict, there was no way in hell I would ever had been allowed to have Paul sleep over in my bed. But…..nothing stopped me from going over to his house and sleeping in his bed. Now to be honest, I’m not sure I would have been completely comfortable sleeping in my childhood bedroom with Paul when I was 18 years old. So it probably wouldn’t have been an issue for my parents anyways, I was just that kind of girl.

Going back to my conversation with the other mom, sometimes I feel my job also entitles education. If you think of the natural progression of human development then in most cases teenagers will be developing into sexual beings. Most parents just don’t have to see it, like stated above if they want to have sex then they will find a place and time to do just that. But when you have a young man/woman with a Spinal Cord Injury or anyone using mobility devises like a wheelchair, then that makes it 100 times harder to get out of the house and into a place where sex can be hidden and secret. In most cases that’s not going to happen, so that leaves you with a very unhappy, depressed and sexually stonewalled young adult. Seriously, something so normal and needed in life is taken away along with the ability to walk, run, dance and move freely without the use of aids.
We worried about that. What would that do to him psychologically, emotionally and mentally. He is a young man, just because he can’t walk doesn’t mean he won’t have needs.
With lots of advice and guidance we once again found ourselves turning a blind eye. Reminding ourselves its his life, his choices and his relationships. We have no say in any of that. Uncomfortable conversations were had, things discussed that you would never imagine discussing with your 18 year old son. This was OUR normal, it might not be the same as your family dynamics but its ours. The most important thing in the world to Paul and I is our children’s happiness. We had to learn to take our morals and beliefs and put them aside inorder for our son to find his own way. Of course we gave him all the information, and we did raise him to be a respectful young man. He never once dishonored our “new” rules, he never disobeyed our boundaries. Even though we were allowing somethings to take place in our home, its still our home.
When I was speaking to this mom about the prospect of her son having female visitor’s her response was “Oh my husband is strict Catholic, he won’t tolerate any of that”, “This is our home, he won’t disrespect us like that.” In her defence she has no idea just yet what life is going to hit her with in the very near future. Paul and I have been living this life a very long time, and we have acquired much knowledge throughout the years.
You see when recovering from a trauma, it takes quite some time to become accustomed to this new world. You meet so many wonderful people, transitions are made, therapists become family, homes are renovated, doctor appointments become weekly visits, health teaching is daily and you are in a whirlwind of busyness. What you don’t see coming is the quiet. When it all disappears~
Eventually, you settle into your new normal, people go back to work, therapists visit less, doctor appointments are needed less and then you are hit with reality. So once the reality sets in for this young man and he realizes his friends are working, going to school, getting married and having children. Moving past and moving on in life, he’s going to figure out pretty quickly “what’s my next move”. Where are my relationships with friends, he is going to miss flirting, dates and sex. If her son can’t leave the house to find another accessible bedroom, or someone to help him make a transfer into “her” bed….how the hell is he going to grow and become an independent sexual man?
I understand this is not something is capable of thinking about. All the things discussed above are pretty difficult too apprehend as a parent. In the beginning, for me my own desire was too provide my son with “the best quality of life.” This is something that I vowed to forever make possible for Braden. That included sacrifice, something these parents were about to get a crash course in.

We can encourage our children to make good choices, we can influence them to be spiritual or religious followers and we can certainly ignite passion for positive living. But at the end of the day, the roads they choose, the morals they develop and what they want to hold close to their own hearts is their choice.
Even though we shed some tears over those teenage years, moments of uncertainty. Wondering all along if we were making the right parenting choices I have to say we ended up doing a pretty damn good job. Today I can say we are sitting on the other side and I am very content with how things turned out. Braden did not suffer from any lack of experience, we did not hinder his growth and maturity by ramming our morals and beliefs down his throat. We allowed him to find his own path, he made his own mistakes and he learned from them. That is exactly how life works, just because he cannot walk doesn’t mean he shouldn’t have the same experiences other young men are having.
I will continue to work with this mom, I do understand her hesitance. It is not easy turning your back on things that you once found morally unacceptable. I have to say it was one of the hardest parenting problems we faced.
Although it may have been a challenge, we always managed to maintain harmony in this house. Respect for all parties was the most important, communication was also high on priority. We can let our adult children build themselves, they need the freedom to do so. Whether they are able bodied or not, even when they are reliant on you the most precious gift you can give them is independence.
Well my lovelies, Until next time good night and god bless~

 

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