Planning Everyone’s Freedom in Spite of the Hand You Were Dealt.

I remember talking to a fellow “autism mom” a while ago.  We were discussing our ideas or more likely our hope that our children would live independently (with assistance) away from us.  Many parents like us often resign ourselves to the notion that our children will have to live with us forever but when Adam was diagnosed, I made it my mission for him to become as independent as possible because, according to this mom I was speaking with, we didn’t sign up for this. We had babies who seemed okay, who by the time they were 2 had shown enough signs to warrant the diagnosis of autism.

Call me mean, call me cold, call me whatever you want but don’t forget to call me honest. My words are based on my family’s experience with my child because each child with autism, like every child on the planet is different.  My kid is not noise sensitive, does not adhere to rigid patterns or schedules, he can be touched, does not rock back and forth and he eats a variety of food – not just chicken nuggets or couches like so many autistic persons do. In fact, if you just saw him out and about without really scrutinizing him, he would appear to be another lanky, energetic teenager. Adam does a shit load of things and functions in situations that no one(except for me and his father) ever expected him to. We put in the love, the work and the time as did he and he has found his niches in this life and looking from the outside in and the inside out, he has a great life because we always believed if we challenged him in good ways, if we taught him to cope with the world, if we helped him cope with his environment, he would be able to live as full and as independent a life as possible. We never let the strange habits, odd reactions and sensitivities he occasionally displayed prevent us from teaching Adam how to cope with this world and function in it. We learned to work through things together. Taught him not to be afraid or wary of certain noises or things while taking into consideration the extra time he needed to learn to handle the things that were overwhelming to him. I suppose looking back I could say Tom and I took whatever the autism threw at our son and at us and we molded it into something that was manageable.

Two jobs, two elite level competitive sports, and an aptitude for the arts later, we have a well rounded young man in spite of the challenges of autism.  The problem with what we have done to make him as capable and independent as he is, is reflected in the type of person he has evolved into. I suppose we could have chosen to take all the sensitivities and oddities and choose to let them overwhelm him and we could have made the decision to sound proof his room, put headphones on his head, not attempt amusement parks, not put him in competitive sports and let him exist in his solo world, spinning the wheels of toy cars while lying on his side. Maybe if we did that he might be a happy little lump content in his own world. But I did not want him living in some facility, not in touch with the world and not in touch with us.  So I picked him up off his side, sat him on his bottom and showed him an alternative to playing with toy cars and changed his life for what I still believe is for the better.  I reached in, found his little hand and held on to it tightly because I was not losing my child to autism. But maybe wanting him in our lives also bit us in the ass. There is no way to sugar coat this (but I suppose I can be polite) – our son is a jerk. Adam has many normal teenage qualities which I accept. Like most teens, his father and I (mostly I ) are major irritants in his life. He doesn’t like being with us anymore, does not want to do anything with us anymore except if he thinks its fun and he is moody with us 24/7. He hates listening to what we have to say. One minute we were loving and holding this gorgeous, curly haired cherub. We were teaching and helping him and cheering him on as he slowly but surely became capable of so much and now that he treats us like shit, it’s quite the slap in the face. Teenage years are not easy  –  how can they be when you have one foot in childhood and the other in adulthood and you drift in between the two worlds every 15 seconds?  Add a big scoop of autism to that and you have puberty stink, puberty ugly, puberty jerk…whatever you want to call it.

The hard part for us is not so much that he is as teenage as it gets (there are two teens in the house and we get the vibe of the stage of life they are in), it’s Adam’s wretched personality. He seems to have a penchant for deliberately getting under our skin. He has certain things he will do that he knows will be disruptive or annoying to us and try as you might you can never truly ignore him. He won’t let you. There are things you can do, medication you can use that improve focus, reduce anxiety, etc. etc.  but you cannot medicate the asshole-ed-ness out of a person. If our son was not autistic, he would still have the personality he has. He seeks negative attention and pretty much only with us.  I hear his support workers and teachers talk about how even though he has occasional moments that are difficult, he shows great empathy. I hear details of the conversations he is able to have now and how helpful and motivated he is and at first I didn’t believe them but these people don’t know each other so why would 10 different people who don’t know each other, lie? I have also seen video footage of him doing all these great things and showing how nice and well adjusted he is and the minute we come home he often goes right to button pushing. It’s almost like some sick, twisted way of drawing pleasure at our expense.

Our relationship with Adam now is nothing like it used to be and I don’t know if it will ever be warm or close again. I think when he lives semi-independently with like room mates and he will really get a sense of his independence from us he may have a greater appreciation for any time he spends with us. It has been very hard trying to love someone who does not like you or perhaps may not love you. I don’t know how he feels about us and I am not going to assume because he lives with us or that we are his parents that he loves us.That would be naive and even a little arrogant. His condition is based on an inability to understand or display emotion in a usual way. His condition results in a constant social struggle and while we accept these things, it is clear that what he likes to do to bother us is intentional and reserved for us.

We have worked hard to help him become (as did he) the whole person that he is today. Adam is very successful and while he completely rejects us, it is not the rejection that is the difficult part – it’s the pleasure he seeks by trying to make us upset. It is the disrespect and the shitty thing is, in spite of the struggle of recognizing emotions etc., Adam knows when he and others are being disrespectful. His teachers can testify to that. It has put a bitter taste in our mouths when it comes to dealing with him. There are some days when we go through the motions to get to the end of the day with him and we are so counting down the days to when he takes over living in our current home and we move out.

Before you pass judgement note that we are going to have to buy a new place for us to live without having the luxury of selling our current home in order to have a down payment for a new one. We are letting our son continue his life in the home he had since he was 7 because it makes his living situation easier for him. He will be close to transportation, his work and the places where he practices for his sports.  It is in close proximity to grocery stores, the mall, our church, the movies and restaurants and everyone in the neighbourhood knows him.  We have taught him how to walk to and from many of the places he needs to be and we have done all we could to do what ever parent of any child hopes to do which is simply to raise happy, respectful, kind and independent children. We are not perfect parents by any means but we did the best with the hand we were dealt because he was brought into this world out of love and was raised cloaked in love and as hard as it is for us to warm to him lately, he is very much loved and cared for. But puberty was not kind to him and certainly not kind to the family and most days we just want to scrape him off of our skin because as much as every day is a new day and a new opportunity and a new day to hope – this child, at least one time in every day intentionally does something disruptive (and he will tell you it is his intent to be disruptive and disrespectful) and we are tired of that. Yes, he is special, he has in many ways been a blessing and he has taught us a lot about ourselves, himself and our capabilities and strengths as people and as a family but man oh man, has he ever tested our patience and love. I understand he has many things he struggles with or copes with to get through a day. We have made our home and the places we go and the things we do as easy and as tolerable for him as possible. We have observed him, listened to him and respected his needs and we are very proud of him but we just don’t like living with him. We are good people.  We are not to blame for his autism although as a mother somewhere deep inside of me I will carry unjustified guilt about this child’s autism right to my grave.  We didn’t sign up for this and we don’t deserve to parent him right through to our death either. I cannot wait for the day we part ways because he will finally get what he wants – to be free of us and we will finally have part of the life sentence dropped. The life sentence of being the parents of a child with autism whose “thing” is to seek negative attention every day. We plan to go on a long vacation the day we leave our son in our home with room mates and support. He will adjust to his new life the same way he adjusted to travelling with his Special Olympics teams without us and his Co-Op at school and getting about with his support workers without Mummy and Daddy.

I suppose I could say I should have been careful about what I wished for – I got an independent kid who is capable of handling his life but his father and I also ended up with a kid who realizes this about himself and who now sees us as irritants and obstacles whom he dislikes yet in some bizarre way he likes it a lot when he succeeds in making us mad. He says he is sorry but he never is as in the very next breath he sets out to push buttons over and over again.  We do a lot of ignoring, re-directing and walking away in order to squash his attempt at pissing us off. He walks away defeated most times when we are able to see our plan through but in spite of the love his father, brother and I carry for him in our hearts, we look forward to the day we walk away because just maybe that will be the avenue we can use to re-build our relationship with Adam.

Like I said before, I don’t care if anyone passes judgement on me or my family because we know the life we have lived.  We know the sacrifices the three of us have made because we love Adam. We also know we did it on our own mostly with the help of strangers we had to trust. Strangers, we have come to know and love, all the way from Alberta to Ontario. Strangers who also helped Adam achieved all that he has. I cannot speak of other persons with special needs, but living with Adam’s autism, for all the goals and milestones he’s reached, for all the pride it has filled us with, for all the good, I fear there have been more difficult times – times where we have been sad, times where we have struggled, times when we felt utter despair.  We have never been able to just put him in the car and go anywhere with him…to this day, there always has to be a plan and a plan B and C. In the midst of the autism, we managed to raise another little boy as normally as we could – giving him the attention he needed and the guidance and time he deserved while having to ask him to understand that he had to learn to wait… a lot.  Our second son could have rebelled, could have resented us and he could have gone astray but instead, he waited, learned to be quite self-sufficient at too young an age and still found time to help us out with his brother. He has been the best support worker Adam has ever had and he has helped him fit into this world in a way we could not teach him. Logan taught Adam how to be a kid, how to act “cool”  and how to, as he ever so sweetly puts it “blend in” and he has stood up for his brother in ways no younger brother should have known how to do.  He taught Adam how to bike to their favourite restaurants and taught him how to use his bike lock and how to work the combination. He taught him how to use money and how to use a cell phone just as well as any teenager. He took over escorting him to the bathroom and showing him how to go in, do what he had to do in the washroom and getting out. When he is with me and Adam he is the one who takes on what Tom would ordinarily do in the public washroom with Adam. Logan is the one who reminds him to keep his stims at bay and not draw attention to himself which can make him vulnerable.  He took over doing that at age 9 because he knew Adam was too tall to come into the ladies room with me at 11. I remember the day he told me,”I can do this Momma. I’ll do it because you don’t have boy parts”.  Logan didn’t sign up for this either but he has such love, acceptance, patience and respect for his older brother and wants to help Tom and me with him any time that he can. That kid put up wit all that Adam threw at him and still, he continues to persevere through the best and worst of what is thrown his way. Logan needs space from Adam as well. He has to go off and find and be his own Logan because, you see, he was given a life sentence too and he deserves to not have to worry about or look out for Adam the way that he does on his own volition.

This past September marked 15 years since Adam’s diagnosis of autism.  He will be 18 in January.  The worst years were between ages 3 and 4 years and between age 14 and now. There were 9 years where things were decent, maybe I could say more in control, happier, manageable perhaps is another word I could use … but it was never easy or simple and I know life is not simple or easy but I feel with autism, if you don’t look for your breaks, take your breaks and work towards breaking away from your child …this frigging puzzling condition will break your entire family.  I’ll be damned if I let that happen. I love my son but I love my other son and my husband too and I love myself and I will not let myself be sorry for Adam because he has autism. I am not going to try and blame his personality on his autism either because we all have a personality and at the end of the day we are who we are. The love in this family is what has kept us whole and it is with the strength of this love I will let Adam and the rest of us be free knowing we have done a fantastic job in getting him to adulthood by recognizing what needed to be done for his well being in the long run.  We could have given up and thrown our hands in the air when things were hard. We could have felt  sorry for ourselves. We could have wallowed in helplessness – but we didn’t. When people said he couldn’t we helped Adam become a person who could and while he is a whole lot better in the way he behaves at home, the things he says and does to intentionally irk the 3 of us … the way he treats us is unfair and that is why more than ever the plan is in motion to set him free and give him the space he wants and the space we need.

I hope for other parents with kids with autism, my honesty will set you free as well. Some people can smile and find everything their autistic child does is beautiful and wonderful and they when they talk they have such empathy for their child when the “raw autism” days take place. They live in an autism central atmosphere and the autism defines them.  My family is different.  We will not pretend that we are okay with what Adam does sometimes, especially since we have learned to separate asshole behavior from autistic behavior. We will not pretend that living the way we have had to was easy or cool. We will not sob on your shoulder but know our shoulders are broad and we have managed our lives without disrupting anyone else’s. I hope my honesty will let parents know that it is okay to feel anger, sadness, resentment etc because they are very normal and real feelings and reactions and if you feel them and not smother them, if you talk about them, you can move on with a clear head and heart the next day. No one signs up for this. No one deserves the life you have when you have to deal with the issues of these children/ teens/ adults. I think if you feel pissed off, get it off your chest with a therapist or a friend or in a group and to hell with the people who may judge you.  I’d like to see them live 20 minutes of the lives we have.  It’s okay to feel however you feel but do have an outlet so that you can keep it together when your child has a day that can push you over the edge. It’s okay to leave your child with a sitter and go out for 3 hours, 10 hours or for a day or 2 and not call every hour to check in. If something goes wrong, someone will let you know but most importantly, it is imperative to have an adult living plan for your child because he is not going to be a child forever and like any other child he may damn well want his independence from you.  If that is crystal clear to you as it has been to us…let him or her go.

I have done a lot to enhance my son – I remember running alongside his bike bent at my waist while pushing his feet onto the pedals for weeks until he figured out what his body was supposed to do on a bike. The day he did he happily and proudly rode off on his own.

I remember pre-ordering our food for months at a restaurant when he was little and sensitive to everything outside of our house. After 7 months he was able to go to a restaurant and wait to be served and could tolerate the ambiance. My husband taught him to skate in hockey skates instead of the double bladed skates everyone thought would be easier for him.  Today, Adam is a highly decorated speed skater, skating on long sharp blades at high speed. His father figured running would be an outlet for him to use up all that excessive energy he constantly has.  Adam has trouble keeping still so Tom taught him to run in marathons so well that he left his bather behind in his dust and today he is a decorated track athlete. We have done our best to make him successful  – not because he wins events but because all these things have made him happy.  Adam skates and runs and drums and sings with a big smile on his face. He is done with us now. We get that.  Have no fear son, you will be living your dream very soon and we will, God willing be living ours because none of us, especially you, ever signed up for this.

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