As long as the internet has been alive, I have been a part of online disability groups. I often start my day by flipping though the highlights and reposting what I feel needs to be passed on. A few weeks ago the social media groups were passing around a petition to sign for a young man who had been denied a heart transplant due to the diagnosis of autism. I first learned of this in an email from a friend that read, “OMG, what if this was JOHN!” I quickly opened the email and read the opening first line of the petition. Unlike my swearing at the medical community friend who sent a hot comment and the petition a to me, I did not react with her injustice. I could not in all honestly say I would be screaming at the top of my lungs if this was my son. I couldn’t process the information as she had, rather I wanted to know more, exactly what do you mean by autism?
Do you mean a young man who is a tad bit quirky but other wise gets on with life or do you mean a young man who breaks out windows when he gets upset? Can this young man speak, or is he non-verbal? Can he take care of himself or is he dependent on care 24-7. I guess what got me most, is saying autism is like saying a person with dark hair, it is just way too vague a range, and conjures up visions to each individual as to what they know autism to be. With the high rise in different levels of this neurological disorder, the range is wide and varied. Children and young adults labeled with autism are a unique and different from each other and autism alone is not a fair means for introducing me to the learning issues of an individual. I would rather the post read something to the line of a young man with social learning disabilities has been denied a heart transplant, but no matter that is my own personal eccentricities at work. I did not read past the first line, I needed time to think first.
As I moved on to read another post, my mind when back to her opening line of “what if this was John” and I already knew the answer, nobody would have ever heard he had a failing heart. Nature would have taken the course it did in the days before heart transplants. Why, because at some point, you have to know your limitations.
Here is where some of you will call me cruel, some of you will cuss me and tell me how much better off my son would be with a different mother. A mother that would fight for him not just let nature take is course and you consider that statement vile and mean. Some of you will tell me how much you love your child and would never, ever be as heartless as I am. Some of you are already red hot mad and mentally typing me a hot letter response to that remark, limitations. Not choose a heart transplant for my son, not fighting for his equal rights? Before you do, and say you would gladly take John from me, take a few minutes to see what a day in the life of John is like. Think about his future and a life without me there to care for him.
I am very blessed that John does not have a violent bone in his body. He is a happy young man with a kind nature, killer smile, and weighs in at 150 pounds on his 20 year old body. He also requires care 24-7. Are you willing to step up to the call of being that care giver once I am dead? Because if John outlives me, he will require round the clock day in and day out care. Are you willing to wake up early and take care of your needs before John wakes or will you wake up at 6 am when John tugs on your arm to signal the start of a new day? Will you, with the touch of his hand understand it’s now all about him, not about you or your needs, and will you treat him that way?
Will you help him get to the bathroom and potty if he has not already gone in his Depends and will you run his bath water for him? Will you sit on the floor by the edge of the tub and wash his hair, his body, shave his face and make boat sounds to make him laugh? Will you trim his nails if they need it? Will you help him get out of the tub and dry him off with a towel and help him dress, brush his hair and teeth or will you loose your cool after a few days and tell him he needs to start doing things for himself.
Will you take him into the kitchen and ask him a dozen questions waiting for a tap on your arm for an answer so you know what he wants to eat? Will you cook him a meal, sit down and feed him before you eat? Yes he can hold his own glass of water to drink, but he cannot get down that glass or get water so will you keep water sitting out for him all day and make sure the glass is never empty? He will drop it half the time, as he has tremors that keep him from being able to hold objects well or for any length of time, so when you hear that familiar thud of a glass hitting the floor, get a towel, whatever was in the glass is now on the counter and floor.
Then there are the Depends. You need to change them at least 15 times a day. You will also need to be on guard for leaks and puddles that happen on the floor and on the furniture. Public places are the worse. You will need to be aware of where the public restrooms are at all times and you will need to have a back up plan if the restroom stall is taken. You cannot really strip and change a grown man just anywhere. Oh and always carry a roll of paper towels in your bag to clean up the leaks he has, after all, it’s not the stores responsibly to clean up after John leaks on the floor. Always keep a big thick bath towel on the seat of the car where he sits even for short hops, you just never know when a leak will happen. You will need a sitting towel for things like the movies or any public place where he will be sitting any length of time, just to be safe.
Also you need to be on seizure alert. These are not just little tremors or stumbles but gut wrenching big huge full body attacks that a wise observer once said looks like he is being tased over and over. Be aware that they just happen out of the blue and when they do your life will stop for a few hours until John wakes back up. The worst places so far have been as we crossed a busy intersection and in the kitchen where hot pots and pans lined the top of the stove as a meal cooked. The safer ones occurred while John was sitting on the couch or in his bed.
I sob wondering who else would deal with this, clean up my son with love and care and tell him they are sorry he is wet and cold.
No, you cannot stay home because John has seizures and is incontinent. John loves and I mean loves to go and do. He is a social butterfly. If you get caught by a seizure in a department store, better call over the store manager and make some plans because short of an ambulance ride out, you aren’t leaving anytime soon. Just make the best of it, and carry a huge purse we refer to as the adult diaper bag with you wherever you go, keep it loaded with a complete change of clothing, Depends, snack food, bottled water, paper towels a lined plastic tote for discretely placing wet clothing or a wet towel in and the normal girl supply of purse things. It makes a great pillow when John is laying out sleeping off a seizure in the middle of the floor in a public place.
Going out is hard because it cost to do fun things. I can’t make John understand that I don’t always have the cash for fun. The cost of basic supplies for John runs something like two to three hundred a month for supplements that help keep him in his top form. I try to buy them on sale and stock up. Depends runs three hundred. Because John needs help and full time care everything we do is twice the expense. I can’t send him to the movies alone so that is 18 bucks a pop rather than nine, the go cart ride that last only a few minutes is 30 bucks a pop rather than 15, you get the idea.
Night is the hardest. I sleep half awake to listen for John. I have recently added a MinPin dog into the mix to help wake me up if he senses something is wrong with John. So far he is the best at alerting me to wet beds. John has accidents in his sleep, sometimes night after night, sometimes twice a night. He will soak the sheets, mattress pad, comforter, and himself up to his neck. I get him up, strip him, wash him down redress him and help him get back to sleep in the extra twin bed in his room. I haul the sheets, mattress pad, and comforter off into the floor and wash the plastic protective sheet over the mattress, replacing the mattress pad and sheets in case we need it in a few hours. Then I pick up the dripping wet bed clothing as well as John’s PJ’s and head for the washing machine as urine drips from my elbows. I sob wondering who else would deal with this, clean up my son with love and care and tell him they are sorry he is wet and cold. If you are up to the task, then I’ll rest in peace knowing I can die and someone is willing to take on this job.
Remember John will be your shadow. Careful if you suddenly need to stop walking or turn around, as you might step on him or trip over him. Please have patience as you try to cook or do laundry or take out the trash and he is hovering so tight you cannot freely move. He does not understand he is blocking the door, or that he moves slowly or that his constant walking on your heels gets old. All he knows is if you aren’t there, he has no care or help. Oh also he cannot move to the side, you know step sideways, you need to grow used to this because in public he can’t step out of someone’s way and if you don’t move him fast enough, sometimes people get very nasty with you or him or both. People don’t get it, it’s so simple, but yet something he cannot do. Can you take my place and deal with this? Will you adopt my shadow and breathe each breath with him and for him as I do? The job is hard, but very rewarding. His smile will light your day and brighten the way. His joy in simple pleasures will open your eyes to the value of everyday living. His passion for life will renew your strength and give you the courage to carry on.
For the first 16 years that John was disabled I was in full mode of fight and recovery. It did not matter to me how many credit cards I took out and charged to the max, it did not matter to me how in debt we went until the day we came close to loosing our once paid for home. Reality is a cold hard slap in the face. I also had to face that fact that yes, John had made great strides, yes, John did shake off and loose that beast called autism, but he was still disabled. He still required life time care. After going so deep in debt, it was time I faced reality and went from amassing debt, to paying off debt and planning for John’s long term care needs. This has been a hard blow, it means giving up the recovery dream and it means not trying that one more thing you want so bad you will go back in debt just to see if it was worth it or not. I think this hurts me the deepest, not having the money to go down both roads at the same time.
In a perfect scenario John and I would live a long fun filled life together and die hand in hand. In reality I know that’s not going to be my luck. I live in fear of what will happen to my son when I am not there to care for him. I know our limitations. I know his and I know mine, I don’t have the money for a one on one life time care giver for John, so it’s better if we didn’t extend his life with a new heart if the one he has starts to fail.
As for the petition, yes, I did sign it. It’s not my place to question this Mom’s understanding of her son’s needs or what a new heart will mean to him. I just know that would not be what I would choose for John. Sorry to my irate email buddy who thought I would jump to get John a new heart, thanks for thinking so highly of both John and I.
Just how far should the parents of a special needs child push for medical intervention? Just as far as they can, as long as the resources are there, and medical science is there for the necessary intervention, it’s then up to the parents to know whether or not the child has the ability and means for self support. Self support can very well mean the child has a trust fund and life time caregiver in place. It is just not my place to judge or my call to make.
As for John and I, I work for the best outcome, enjoy each day with him and try to take the future in stride as I plan for it as well. Can a Mom ask for anything more than to enjoy each day of her disabled child’s life to the fullest and close her eyes knowing she has done what is best for him with the time she has and the money she can spend. No, I think not, which is why I am at peace with my life, choices and most of all, my very special and sweet young adult son, limitations and all.