The last 13 years have been a rollercoaster. Parenting a child on the autism spectrum has been quite a challenge, more than half of those years I did it on my own, then there was step parenting added to the mix and more siblings. There have been times when things start to go smoothly for a while and you think you've found what works, until all of a sudden it just doesn't work anymore. You deal with everyone else's opinions, criticsims and judgements and always feel completely misunderstood. You constantly second guess whther your decisions are right and feel inadequate for the task of parenting this child pretty much all the time. I wondered if it was just me who felt like this, until I found an autism discussion site on facebook today and read this:
"How can a little child make everyone feel so incompetent!

In all my years in the helping profession I have never seen emotions so intense as I experience when helping children’s and families on the spectrum. Whether it be fighting among parents and caregivers, battling between families and schools, struggles with professionals, or battles with government agencies and insurance providers, the frustrations for all parties become strong and emotions high.. People point fingers, throw names and accusations around, and threaten action against each other.

What I realized quiet early, is nothing makes parents, professionals, and teachers feel more incompetent than a challenging child with autism. These children often do not respond as favorably to the typical parenting, teaching, and treatment strategies that work so well with other children. Their behaviors are so often difficult to read, and their needs are often hidden and inconsistent. They process information differently than us, so their judgment and reasoning does not match ours. They respond well to one strategy this week, to fight against it the next. Just when they begin to show progress, they suddenly regress and fall backwards. They can be excited with glee one minute, and screaming for their life the next. They can be so unpredictable, that the best of minds become flustered in confusion. Nothing makes us adults feel more vulnerable than (1) not being in control, (2) not knowing what to do, and (3) having others demanding that we change.

Whether it be parents who feel the stares, the negative comments, and accusations that the child’s behavior is the result of their poor parenting, or the teacher who has to somehow provide strong individual accommodations for one child, while trying to meet the needs of the total classroom (especially when no one may know what the problems are), or the professional who exhausts all the common therapy tricks in their tool boxes, we all have to admit, that no one can make us feel more vulnerable and inadequate than children on the spectrum. They are so consistently inconsistent, and fluctuate from what they need from one minute to the next. We all have a great need to feel “safe, accepted, and competent”, and the challenging child on the spectrum threatens that need all the time.

The principle often spoken by Dr. Ross Greene, that all children “do the best that they can, given the demands that they are under, and their ability to effectively deal with them” applies to all of us. If someone (parent, teacher, professional) is frustrated, angry, and acting inappropriately, we should immediately assume that they do not feel competent in dealing with the demands they are currently dealing with. Just like we do not want everyone to do with our children (demand, scold, punish), we do with each other. We demand, direct, and pressure others into doing something that they do not know how to provide. They feel inadequate and threaten, then they fight back (just like our children). This is a natural reaction as human beings, rather they be adults or children, on or off the spectrum. When we are faced with uncertainty and anxiety, we feel vulnerable and want to escape and avoid. When pressured, our “fight or flight” response kicks in and emotions fly.

We all need to remember that this vulnerability effects all of us, and we need to take a deep breath, assume that others are feeling just as frustrated and inadequate as us, and validate and support each other. Focus on what each other is doing right, and foster our strengths. Find a common ground and facilitate the positive. Understand and validate, before we demand change. Acknowledge that we do not have the answers, and that is ok! If we collaborate together in understanding the child, we will eventually find the path to help. Assume that the journey will be filled with hills and valleys, triumphs and backslides, and that no matter how competent you are, they can always bring you to your knees. This is the life of children on the spectrum, as well as for all of us that love them so much. Let’s look behind all the negative actions to understand the vulnerabilities in all of us. In order for us to effectively collaborate we need to be working partners with each other."
 
I cried reading that because it made so much sense of my life. I am finding Jaden to be a whole new challenge as a teenager and have never felt so incomptetent or lost as a parent. I have had many well meaning comments from other parents of teens saying they understand but i'm gonna be brutally honest here, throw polictical correctness out the window and say straight up that i'm sorry but if your teen is not on the spectrum then  please don't tell me you understand because you don't. Watching a teenager have a meltdown like a 2 year old is scary, it's not a tantrum, he's not being naughty, he is just overwhelmed and not coping, but calming that down is so much harder with added hormone agro now. And the things that cause meltdowns have changed. It's not as sensory related as it used to be, it's him feeling overwhelmed with things expected of him at this age, like the amount of schoolwork for example or being told that the way he has interpreted an assignment question is not actually what it is saying. And so often I am guilty of causing him frustration because I expect him to 'act his age' or behave a certain way because he is 13 and forget that his brain is on a different planet to mine and his emotional understanding will never be what I want it to be and no amount of me yelling at him will change that, in fact it just makes it worse!!! 
 
I know that people say it's normal for teenagers to struggle to get out of bed and ready for school in the morning, but it's not normal for those teenagers to sit on the bed in their pyjamas for half an hour because they simply can't remember the next step is to get dressed even though it's been the same routine every day for years. I know that people say it's normal for teenagers to not want to do their homework, but it's not normal for those teenagers to read an assignment question, fixate on 1 word and decide to do an assignment on that even though it's not the actual task and then be so immovable that what they have in their head isn't right that they meltdown and then cannot be coaxed to touch the assignment again. Do you see the difference??? Normal strategies that used to work in helping Jaden deal with frustrations just aren't doing the trick anymore as he is finding a whole new hormone charged emotional side and the world just seems all too hard for him right now and consequently for me too.
 
I have questioned whether he really can cope with school and have had to readjust my expectations of what his future might look like. He lives so much in his own world that I have no idea how he will ever have a job or live an adult life out in the big world unless he is with people who understand that he is simply wired differently. I know that is a few years away but I am beginning to truly grasp that I have never really understood him for who he is but rather hoped he would change as he got older and become someone who fitted better in the world. Every parent wants their child to be accepted and happy and I am realising that deep down I always just hoped he would one day figure out how to fit in. I have gotten to the end of myself so many times simply because I expected something that is just not reality.
 
And now I face decisions about his life that I feel inadequate to make. Logistically he will probably have to change schols next year because I just can't be in 2 places at once and Bethany is starting prep at the local school and so I am juggling the needs of different children trying to figure out what's best for everyone and it's hard. I have moments of being tempted to home school him again but am really not sure i'm up to the challenge, but is that just because I was focussing too much on academic stuff when really what he needs is life skills??!! I can't simply make him into who he needs to be to fit in the world and I am seeing that now. I heard so many times from people criticising home schooling that he was too sheltered and needed to learn to cope out in the world, but guess what, he is who he is and no amount of schooling is going to make him fit any better in the world.
 
I am tired of pople's opinions and judgements, tired of well meaning comments, and just wish I could figure out how to help my son navigate life without it being so scary for him all the time. I am the exhausted, confused and overwhelmed mother of a teenager on the autism spectrum and I need to be able to honestly share how i'm feeling, so please just listen, pray, hug, but do not assume you have all the answers for me. The quote above talked of kids on the spectrum bringing us to our knees and that's where I am, but it's a good place to be to seek the one who created my Son and so it's where I will stay for now as I learn to ride the rollercoaster of the teen years with this child and know that i'm not alone!