Isolation

One of the most enduring experiences for me as the mother of an autistic child, is a deep and growing sense of isolation. No, not just a sense, a reality of isolation. There was a time when the reality was devastatingly obvious to anyone who knew me, because I couldn’t talk on the phone or in person or have anyone around the home if my son was around, and my son was almost always around because he was so hard for others to look after. My son would violently attack me or others if I tried to communicate – or at times, even be in the same room – as others. Now, with his autism affecting him less severely, the isolation is just as real, but subtle and so much harder for others to understand, and that inability to make others understand becomes itself further isolating.

I reached a point recently where I gave in, I gave up. Interacting with what few adults were in my life was itself depressing; they talked about places they went and things they did and freedoms they had that were constant reminders of what my life isn’t and maybe never will be now. I realised that whenever it was my turn to become an active participant in a conversation, that everything that came out of my mouth just made people give me piteous or worried stares, so I started trying to avoid having to share my life with others at all, and heavily censored what I did share so it didn’t sound so bad. And then I withdrew even further, trying to back out of any interactions and pulled away from social media.

There came the day I disconnected the internet, turned off my cellphone, pulled the phone jack out of the wall; I figured I might as well truly embrace the isolation instead of fighting it. It was inevitable after all, why spend so much energy trying to overcome it. I accepted that the focus of my life was what it had been anyway for the last many years: my son’s (or sons’) autism. I would interact with what few adults I had to help my sons, but beyond that I would be alone, because it was all too hard.

This sense of isolation had become so much worse when my son shifted from a special school to a mainstream school two years ago, because I was no longer regularly interacting with people who actually understood my life. The autistic and other special children, their families, the access to teachers and therapists on a daily basis who got my son and my life and made me feel normal – all gone. My son used to get invited to many parties a year back when all the kids in his class were like him and the parents saw us as wanted and normal. Now he gets invited to one friend’s party a year by the one friend he has that he only became friends with because they were buddied up by the teacher last year. The friend is lovely and his family is awesome – don’t get me wrong – but that’s all my son has now. We don’t belong to the wider community. The birthday party I threw for my son last year, only one child who had been invited turned up – the one friend. It breaks my heart for my son, and it deepens my personal sense of isolation.

Then something happened on Monday that finally pulled me out of my growing funk. I attended the opening of a new satellite unit at a local school – a satellite unit is a class of high needs special children (with associated high teacher ratios, resources and skilled therapists) placed within a mainstream school. And at this event I saw the principal of my son’s old special school, and I hugged her and we discussed advocacy issues. And I saw my son’s old special class teacher, and we hugged and celebrated how well my son is doing. And I saw my son’s old preschool support worker, and we hugged and rejoiced in her recent success in getting more work as an aide within the school. And I saw a few of the children from my son’s old special class, and just seeing them and their stims and their unique ways, just lit me up from the inside. I caught myself smiling and realised it was a genuine smile, not a forced one. I had human contact, with people who truly understood me and my son, and it was bliss. Brief, but beautiful bliss.

So now here I am blogging again after a hiatus, because I feel like sharing and reconnecting again – I’ve had that little lift I needed to stop feeling sorry for myself and just get on with life again. The cellphone is back on, internet is all go, and back on social media all my lovely online friends were still there for me.

I know there will come a time again that the isolation builds and overwhelms me, and the foreign-ness of my life from those around me starts to hurt, but I’ll know next time to reach out and try to make physical contact with the disability community, a community that celebrates the little things, and fights to make this a better world for people like me and my son, and who “get me.” Because I need to be gotten – I think we all do.

I’d like to think that in a more inclusive society, perhaps I wouldn’t feel so isolated, and there would be more people in everyday life who saw and understood and cared about these different lives we lead. But maybe it would make no difference too – maybe isolation is a part of the parenting experience when your child has autism, and us parents just need better counselling and support to navigate it. Maybe it’s a necessary part of making it through that we become part of the local disability or autism community, and that’s not such a bad thing anyway. Lots of maybes. I think ultimately we have to find what works for us as individuals; for me that seems to include a cascade of heart-felt, much-needed and well-timed hugs.

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36 Responses to Isolation

  1. poodlesoup says:

    Maybe the online community isn’t as effective an antidote to the isolation we all know, and that you describe so well -as always-, but I’d like to give you a virtual hug and welcome you back :). Please keep writing!

  2. Sarah says:

    Wow, I just stumbled upon your blog after googling ‘Autism New Zealand’ when my son was diagnosed 2 months ago and just got notified now about this blog post.

    This is pretty much exactly how I’m feeling at the moment so as strange as this sounds it’s somewhat comforting to know these feelings are probably normal as parent’s of children with disabilities.

    I’ve found my group of friends lessening and my family’s tolerance of my exhaustion and distress lessening and I’ve found solace in online forums where people understand what my life is life day to day. So, thank you.

  3. Catherine says:

    So understand you and am often in that place. It requires energy to reach out and connect with others and often us mums run out of that energy while caring for our special kids. Thanks for sharing, glad you are back online.

  4. Bec says:

    It’s a cycle that’s easy to get caught in, isn’t it? A lack of support makes everything harder and more exhausting, which in turn makes it harder to put yourself out there and explain yourself in the hopes of being understood and supported. I developed a wall to protect myself from feeling hurt by the isolation, which only served to make me even more isolated. I’m glad you’re back to writing, which you do so well as always. A big virtual hug for you!

  5. nostromo says:

    My singular most wretched experiences of the last few years have involved taking my son to other childrens birthday parties. One in particular I can still recall as invoking the greatest sense of loneliness and isolation I think I have ever felt while still being in the presence of others. At another one I just stopped my son lunging at the cake, and the mum told me she would have ‘killed me’ if he’d got his hands on it. I hid out in one of the bedrooms with my son while the normal kids had the party. Fun times.

    We don’t invite other children to my son’s birthday parties as he has no friends. The general thing that happens is family come over and chat to one another inside ignoring my son while he hangs out in the back yard with some little sticks (thats what he is interested in; spinning sticks in front of his eyes).

    Meh, Birthday parties are over-rated.

  6. usethebrainsgodgiveyou says:

    Years ago Bernie Rimland proposed that inclusion isn’t always the best choice. I remember school being so difficult for Ben, so easy for other kids. The true friends we had were like us. Now, he is going on to college, and will be part of a program for kids with intellectual and developmental disabilities. Reading this, I am seeing it is probably a good thing. He will be accepted. See, I always thought he would find a way, but for the first time in his life, he will be among his true peers. Love to you and your son, I know it isn’t easy.

  7. Keep reaching out to your friends in the disability community. We’re here for you.

    It seems like a no-win situation, doesn’t it? Inclusion means more opportunities for a real education, but it can be isolating, so what do you choose? I wish society would change faster so inclusive classes would be less isolating for your son and interacting with their parents and your friends would be less isolating for you. But in the meantime please know you and your son aren’t alone. Hugs.

  8. Kathy R. says:

    ((((Hug))))

  9. Hilary says:

    I hear this. Sending you inclusive and collective solidarity.

  10. Autism Mom says:

    I know an acquaintance across the planet can’t really help a whole lot, but I, too, am here when you need it! And should I find myself in your lovely land, I will invite you out for coffee and we can talk about those things that we “get.” 🙂

  11. Kats in Ireland says:

    Very touching post. I love your blog. It’s why I am so reluctant to mainstream more, I am tired of feeling isolated and the constant apologies for my daughters behaviour that the regular people find hard to understand. I now love specialised activities and never though I’d say that! Think your blog made me understand why!

  12. Mum to a Special little guy says:

    I totally understand where you are coming from. This is why I am in no hurry what so ever to send my 7 year old son to a Mainstream school, and keep him at his Special School. It was tough enough when he was under 5 having him in a regular Kindergarten. I just don’t see the benefits as his social behaviours and communication have improved in the he last 2 years after being in a Special School, than they had in the 4 years of being in Playcentre from 1- 3 then Kindergarten at age 4-5, where as despite what people claim, I don’t think they advance too much more from being around “normal” (for lack of a better word) kids their same age, as even with all the right interventions and progress made, they will always be behind and struggle to keep up, and more often than not, the parents and kids still tend to isolate you and your child because they are different.

    • There’s a lot of truth in that, and my own son also appears to have done his strongest and quickest social and developmental growth whilst attending a special school too. Thanks for sharing your thoughts and experiences.

  13. Aunt Benjy says:

    Oh Jeez…I hear you. My husband and I haven’t been out together at night for 5 years. We have no local family, and friends who have volunteered to baby-sit refuse to do it again. Getting one element of the bedtime ritual wrong always results in a phone call 1/2 an hour into a movie or dinner, and home we go.

    It *is* isolating, but we survive because we have friends who are prepared to visit us. If their tolerance drops, we’ll lose that too.

  14. Reblogged this on Exceptional Delaware and commented:
    I know many parents who feel like this. It’s a sad part of life when you have a child with high functioning autism. The best thing I can recommend to any parent is to remember you have to take care of yourself. This is one of the most important things I learned from a support group I attend for special needs parents. Because if you aren’t in good shape, how can you be at your best for your child? I don’t think ANY parent can be there at 100%, all the time. For a brief time, I knew exactly what this parent was going through, and it is a very dark place to be. I pray that all parents going through this can find a semblance of hope in the darkness and learn to see how beautiful life can be.

  15. vscpatricial900 says:

    My son did not have autism but he had emotional problems that prevented him form keeping up with his peers in a mainstream school. In kindergarten he would break out in tears when the teacher would tell the children to put away their projects and he had just gotten started. He was tested for a learning disability and none were found. Finally, in the second grade, I put him in a private school that allowed him to work at his own pace. He did well there but in his Jr. year of high school he decided to return to public school and did alright in all but English where he had a bad teacher who told me that when he came to her class she thought he was the all American boy only to discover he was too slow for her class. She treated him badly and gave him low grades on papers I had helped him with and I knew she was not grading him correctly. When he went to the final exam, she told him there was no need for him to take the test. He was a failure! He went back to private school and graduated with his class. Now he is grown and in college and his greatest loves reading, writing, Philosophy, and Literature. His knowledge is amazing. His intelligence is obvious. I experienced a great deal of empathy and heartache for my son while he was growing up. I also felt isolated from other parents because I blamed myself for my son’s problems. I have read a great deal about children with disabilities and I have been quite interest in autism and its causes. I have read books about specific children with autism. They are all different and yet the same in basic symptoms. For some reason I especially identify with these children and I most definitely know what it must be like for you as a parent.—the isolation, the loneliness, and the heartache and pain you must suffer. These children do get better usually as they get older. I want you to know that I am with you and I support you and I do offer you my hugs!

    .

  16. VinnysVoice says:

    I can really relate you your writing and although I am only very new to the journey with autism, I think the isolation starts long before diagnosis. I found myself avoiding public situations more and more because it was just too hard and the looks of judgement from others were just too painful.

    You may be interested in a lobby group that my partner and I have set up recently called Autism Action NZ. Currently we are just on facebook but are looking at getting a website up and running. You have a large following and it would be great to have you on board if you are interested.

    • Hi VinnysVoice, I’m always interested in groups that want to fight for the rights and voices of those living with autism. I’ll have a look at your group on Facebook, and do let me know if I can help you in some way. Thanks for commenting on my post and sharing your own experience with isolation, thank you too for your interest in lobbying for our families 🙂

  17. Cakeysmom says:

    I totally understand the party thing. My son is now 18 and I don’t think he has ever been invited to a birthday party, except my daughter who has children of her own asked us to bring him too since we can’t leave him home alone. He did not get potty trained until age 11. We are still rejoicing about that . He still does not read or write or talk. He can type his name and a few numbers on the computer that’s it. He does have his own parties in his room all by himself tho. He is the only person that I know that can have a party with only one person attending. We hear him whooping it up in his room or the front room sometimes all night long . Rest assured if anyone else ever showed up at one of his parties, the party would be over. He does not care for people , which really is an understatement. We don’t trust him around cakes, he loves cake, (hence the name Cakeysmom, ). Yes I have felt isolated, but never so bad as when we went to relative’s house for the holidays. He never wants to be around people and so while everyone else is having a great time, I have to take him away somewhere and be alone… again. They don’t call or ask how we are doing or why we are gone, ….again… it really hurts.

    • nostromo says:

      Our son has one person parties too. He will be in his room for a few hours with a twig or straw. He will be looking at the twig and bending it slightly to new and interesting shapes, and spinning it slowly to observe the different angles and shapes. This is HUGELY entertaining for him, and he will run back and forth and leap off the bed and giggle and whoop it up and yahoo and jump up and down. He seems very happy!

  18. T says:

    Thanks for this post. I have two sons who we suspect to be autistic. It’s not “severe” in the sense of many others on here but this sense of isolation and perpetual stress and “best foot forward” in public is a gruelling battle. I too have nothing else to add in a social arena other than how exhausted I am as a full time Mum of two autistic boys because of the extra work I do with them to try and keep them on an even keel e.g. unpicking silly sayings they’ve heard and hang onto and repeat whereas “NT” children know not to say them in front of teachers etc, or working with my boys on motor skills or social stories. Thank goodness for specialist services within mainstream schooling.

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