The isolation of Autism is getting me down today. Not the kind that the person living with Autism chooses and often enjoys. The kind that comes with having a young child with Autism. And more specifically the kind that comes from choosing a perspective on Autism that seems so different to almost every other mum and dad you encounter. This issue is magnified by several factors.
Firstly I live in an isolated and relatively small city ( I think its the second most isolated after Honolulu?). So there doesnt seem to be a well established Autism community here. Ive come across a couple of parent support groups, and an Autism Information/support centre, and let me add finding these was not easy. The numbers of people accessing these services seem quite low. Either that, or the so called 'epidemic' has bypassed Perth. And although it has been nice to meet some other mums and their children, apart from Autism we really have nothing in common. On top of this Harri's therapists think his social skills warrant him mixing with NT children. Which means not going to play groups for children on the spectrum where I have the best opportunity to meet mums who understand what living with Harri is like.
There is a nice online community at a national level on a Federal Gov. parenting site. And some of the parents commenting there are also in Perth. We even got close once to making a time to meet. But as most reading this know, therapy and school drops offs, and medical appoinments, day time naps and so on, tend to get in the way. And to be perfectly honest as more time goes on and I become more entrenched into my own perspectives on Autism, it is with trepidation that I meet other parents nowadays. I am highly tuned in to terms that others may use that signal to me we are not coming from the same place in how we approach and think about ASD. The sinking disappointment when I find myself sitting with a group of mums discussing some new treatment, what their DAN Dr said, or the evils of ABA. For me, part of the drive to connect with other parents is not to bitch about Autism and how shit our lives are because of it. And how are we going to recover our lost children? I want to meet mums and dads with whom I can talk about and question the latest research, who I can celebrate with when our kids achieve something, anything. Parents who are able to see the strengths in their children as much as the struggles. Parents I can have a laugh with as much as a cry on a hard day. And even if we don't agree on a certain topic, at least give an intelligent thought out reason for why you think the way you do and I will respect that. Don't trot out crap about learning from google and youtube, that really shits me.
Anyway. I know my own strong beliefs are part of the issue here. If I could simply be happy for the company of other parents without engaging in the more complex discussions about Autism, or at least accept others ideas without judgement, then it would all be fine. But I can't. So I rely on the internet to keep me plugged in to like minded souls. Reading the Thinking Persons Guide To Autism and leftbrainrightbrain religiously. Well as religiously as an athiest can. And reading as many book as I can, reminds me there are parents who think like me, and the existence of the blogs I mentioned above is evidence that the authors may have struggled with these same issues, providing the impetus for their sites. So I suppose this is just another part of the process. Finding your community within the ASD community.
Firstly I live in an isolated and relatively small city ( I think its the second most isolated after Honolulu?). So there doesnt seem to be a well established Autism community here. Ive come across a couple of parent support groups, and an Autism Information/support centre, and let me add finding these was not easy. The numbers of people accessing these services seem quite low. Either that, or the so called 'epidemic' has bypassed Perth. And although it has been nice to meet some other mums and their children, apart from Autism we really have nothing in common. On top of this Harri's therapists think his social skills warrant him mixing with NT children. Which means not going to play groups for children on the spectrum where I have the best opportunity to meet mums who understand what living with Harri is like.
There is a nice online community at a national level on a Federal Gov. parenting site. And some of the parents commenting there are also in Perth. We even got close once to making a time to meet. But as most reading this know, therapy and school drops offs, and medical appoinments, day time naps and so on, tend to get in the way. And to be perfectly honest as more time goes on and I become more entrenched into my own perspectives on Autism, it is with trepidation that I meet other parents nowadays. I am highly tuned in to terms that others may use that signal to me we are not coming from the same place in how we approach and think about ASD. The sinking disappointment when I find myself sitting with a group of mums discussing some new treatment, what their DAN Dr said, or the evils of ABA. For me, part of the drive to connect with other parents is not to bitch about Autism and how shit our lives are because of it. And how are we going to recover our lost children? I want to meet mums and dads with whom I can talk about and question the latest research, who I can celebrate with when our kids achieve something, anything. Parents who are able to see the strengths in their children as much as the struggles. Parents I can have a laugh with as much as a cry on a hard day. And even if we don't agree on a certain topic, at least give an intelligent thought out reason for why you think the way you do and I will respect that. Don't trot out crap about learning from google and youtube, that really shits me.
Anyway. I know my own strong beliefs are part of the issue here. If I could simply be happy for the company of other parents without engaging in the more complex discussions about Autism, or at least accept others ideas without judgement, then it would all be fine. But I can't. So I rely on the internet to keep me plugged in to like minded souls. Reading the Thinking Persons Guide To Autism and leftbrainrightbrain religiously. Well as religiously as an athiest can. And reading as many book as I can, reminds me there are parents who think like me, and the existence of the blogs I mentioned above is evidence that the authors may have struggled with these same issues, providing the impetus for their sites. So I suppose this is just another part of the process. Finding your community within the ASD community.
I Love your blog, sharon...I hear you. I know EXACTLY what you mean about how sometimes autism is like a competition amongst the parents and sometimes they can be even worse than the regular parents at playgroups etc. How can one mum of an autistic child make a judgement on another? i was thinking this exact thing today and talking it over with a disability support worker who was visiting us. Its bad enough when other friends say hurtful things but its an even lower blow when it comes from someone in the autism "family", if you know what i mean. Seriously, why does it have to be a competition?! these mums need to get a life. They need to focus on their own families and stop interferring in others lives. Ive noticed that alot of people will become obsessed with what they think your child needs yet they ignore the stuff going on in their own backyard. I said to the support worker today that id rather have a much smaller network of real friends than people who walk all over you or have no respect for you. Stand tall, you are a great mum who knows far better than anyone else what you and your family need. Life is not a competition, its a journey.
ReplyDeleteLove Katrina (Kat 1973)
Great points indeed. I don't like the fad treatments and I don't like to sit around and dwell on the misery of it. It's better to try and have a good attitude and just learn and absorb as much as you can to help your child and your family.
ReplyDeleteThanks Kat and C.
ReplyDeleteFor me its like finding out an Actor I like is a Scientologist *checks over shoulder*
ReplyDeleteWhen DAN and recovery and anything that de-humanises who my children are NOW comes up I try to fugg up the screen I see that parent through but it is really difficult.
Its why I made such a terrible moderator of the Irish Autism Action FB group. I just wanted to swear at all the wackos with their theories (did sometimes when they rang me)
But sometimes I did some good. When a parent asked about Plinky Plonk Listening therapy because they were considering paying an agency to provide it at €5,000 for the course I said
"That's a load of shit"
She met me in a coffee shop a few weeks later and thanked me. She was just making her self feel guilty for not buying into it and I helped her relax and look for something evidence based.
The stem cell lady was not so pleased....
Ha ha ha, I feel the same way about Scientology. It's a passionate dislike of mine. I find it difficult to bit my tongue on ASD parent websi tes. I offended some women just this week by running down the whole DAN model conference thing. For fucks sake if your kid is allergic to something dont give it to them but dont assume their ASD is going to disappear.
ReplyDeleteHaha, aw. It's an odds game, tho, you know. There are only so many people who are going to have a) children with autism, b) excellent critical thinking skills, and c) a nearby location. But I wish you the best of luck!
ReplyDeleteMy heart goes out to you my friend. Even with living in a nice size city and having many friends w/ kids on the spectrum (my oldest was in a pilot pre-school program for high functioning autism which helped meet others in the same situation--but again, we were all very different in personalities) the isolation still existed. I found many of my NT mom friends didn’t “get” it and really didn’t WANT to “get” it. As hard as it was, I let them go and felt much better for it. Each child is different (I have 2 on the spectrum) and will react differently to treatments but we have had some great success from some of the vitamin supplements and diet (Not talking, screaming/head banging all day as a 3 year old to being completely mainstreamed in kindergarten). Do what you believe is right for your child. Know you do not walk alone although many days you feel like that. There IS hope for a better life but without trying you are guaranteed to stay in the same place forever. Feel free to email me on those dark days. I’ve been there and know how you feel. (tamnix@hotmail.com)
ReplyDeleteSunshine, you are spot on. It is an odds game.
ReplyDeleteMommy Princess, thanks for dropping in, and thankyou so much for your kind offer of support. BTW your kids look adorable.