May 17, 2020 at 8:13 pm #8781
I am a happily married man with two beautiful and healthy children, a 14 year old daughter and an 11 year old son. We enjoy a very harmonious home life and our kids are both very loving and affectionate. The problem we have is what goes on outside our home and, in a nutshell, we are being treated like outcasts by our so-called ‘community’, so, needless to say, social distancing has not been the same big deal for us like it’s been for most other people.
Myself and my wife, like every other young couple, settled down with the dream of having a family and all the wonderful things that come with it. We knew it wasn’t going to be a picnic ride but we certainly weren’t expecting the coldness and total lack of empathy that we’ve received from other parents and most school teachers.
Both our kids were diagnosed with ASD and both suffer the double whammy of struggling both socially and academically. As the years have progressed the gap between them and their peers has grown wider and wider, thus making for a more and more difficult and lonely life for them.
I am writing this mail as a call for help as we are both at the end of our tether in trying to figure out how to make life more pleasant for our kids. We don’t expect anyone to wave a magic wand and fix our problems for us but it would help a great deal to at least connect with other parents who are, or have been, in a similar boat to ourselves and can give us some kind of moral support because we are in a very lonely and scary place right now.
We have gone down the road of early intervention and while that has helped somewhat, mainly in terms of improving our kids’ speech and language skills, it has not given us the kind of support that we really need i.e. having our kids accepted into an inclusive society. We’ve even tried counselling for our daughter but found the therapist in question very patronising with myself and my wife and she also made our daughter feel uncomfortable in those sessions so she was not worth the money she was charging us.
This last 15 years has been a roller-coaster ride for us with lots of highs but many many lows as well. While the basic parenting has got easier it’s got more and more difficult as far as school, and generally preparing our kids for life, is concerned. As heartbreaking as it was, we weren’t really surprised when our kids were dropped by their peers (including a next-door neighbour) as we wouldn’t expect children to have any understanding or cop on when it comes to disabilities like autism. However, we were never expecting other so-called ‘adults’, especially teachers, to be so cold and, boy, does that feel like a massive kick in our stomachs. It’s very clear too that the horrible isolation of our kids from their peers has been encouraged by their parents who obviously don’t want their kids to hang out with ‘losers’.
Both myself and my wife have had our own personal struggles with self-esteem since childhood but somehow we both managed to dig deep enough from within to push ourselves and, even though it was hard work at times, it did pay off in terms of achieving academic qualifications and making friends. But, we feel that the world has got so much more competitive and judgemental now than it was when we were growing up thus making it more difficult for our kids to build up their own motivation to push themselves.
The challenges brought on by raising autistic children have been particularly hard on my wife as she came from a very dysfunctional family and hence has no family support to fall back on, and her friends have completely abandoned her because these parental challenges have made it more and more difficult for her to keep in touch with her friends. Also, in this horrible Post-Celtic Tiger Ireland of keeping up with the Joneses, my wife has received no support at all from any of the other school mothers who, instead, have rejected her because she doesn’t tick the boxes of a modern day yummy mummy (e.g. doesn’t live in a show house, live a glamorous spa lifestyle etc). It’s desperately soul-destroying for her. She does attend a local mental health support group every week but there is only so much good she is getting out of that and it’s certainly not giving her the social life which she so badly needs.
Myself – I’m that bit luckier in that I grew up in a loving family but, due to many years of relentless bullying, it took me well into my 20s (I’m 50 now) before I built up enough confidence to make friends and ask girls out. I attend a local Mindfulness Meditation group weekly which I find very helpful but I haven’t met anyone in that group who is in a similar boat to me and it is not the kind of environment in which people open up about personal things – it’s more of a practice group than a support group.
My wife and I were lucky to grow up when we did but there clearly is no room in this world now for autistic people and it’s a very lonely and depressing place to be if you’re not fortunate enough to be born with confidence and good social skills. Life on Earth really is a survival of the fittest.
I write this mail out of despair because we are facing disastrous end of school year results for our daughter at the end of this month with her 1st Year Assessment marks. We as parents have helped her as much as we can with her homework and, lately, her homeschooling but it’s very clear that she is completely out of her depth in her schoolwork. My wife and I feel like the blind leading the blind as neither of us are qualified teachers (like so many other parents, we’ve had to juggle our work with this over the last couple of months) and we really don’t know what to do now as the vice principal, who is our main point of contact in our daughter’s school, is totally unsupportive and very dismissive of us as parents. We have considered changing schools but we reckon that this probably wouldn’t make any difference and it might actually cause our daughter more upset due to the upheaval that would come with it.
Neither of us expect our kids to become high-achievers in education or the job world but we feel that both of them should at least be facilitated in such a way that they can get through school, especially secondary school, as smoothly as possible in a way that they are receiving encouragement rather than having their self-confidence eroded. We feel they both have potential in terms of careers – our daughter in childcare as she is very good around much younger kids and our son possibly in visual/audio production of some sort as he loves making movies with his tablet and he is very creative and good at editing. My daughter has also expressed a desire to have her own children some day given her love for babies and young kids but we feel unsure about encouraging her to do this as we don’t want her to risk going through the heartache that we’ve been through if she has autistic kids herself.
While there’s been alot of attention, rightly so, brought to building a fairer society for minorities such as the LBGT community, travellers, immigrants, non-white people, women in the workplace, people with mental health issues etc, autistic people are still being largely overlooked and while great work is being done by the likes of As.I.am in promoting more awareness of autism there is still alot of ignorance about autism, so we still have a very long way to go in society before autistic people are treated with the same respect that every citizen deserves. At the moment they are being treated like lepers and this is just not acceptable, particularly in the hugely advanced world of 2020.
Nobody chooses to be born autistic but it sure feels like everyone who is born with it is being punished for life unless you’re lucky enough to have some kind of great gift or ability for something (e.g. Greta Thunberg) but if, like our two kids, you’re struggling both socially and academically then God help you!
One sentiment that’s being expressed alot these days with this pandemic is “We’re all in this together!” but it sure doesn’t feel that way for families like ourselves in general.
Sorry for the very long mail, I wasn’t intending for it to be this long, but I needed to get as much in here as possible to give you a good enough insight into what we are up against in our day to day life.
I look forward to getting some kind of feedback, particularly other mothers who might be able to offer some kind of moral support to my wife as she really needs it. We would also be interested in getting involved in some kind of activism for autism along with other parents as we feel that doing something positive would be alot more constructive than continuing to feel sorry for ourselves.
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