Thursday, June 26, 2014

Do I have a choice?

I was reading an article by Australian Comedian, Josh Thomas today about gay pride: Read it here. It really resonated with me. I am quite often praised for parenting two children with special needs, having a job, and studying. Well sometimes I am called crazy as well but that is besides the point. I don't see parenting my special needs children as a choice I made. I mean, yes I decided to have children (sorry if that offends those who believe children are Gods will) but I didn't have much control in the children I got. I often see parents of children with ASD determined not to allow ASD to be used an excuse for their child and many of us spend a great deal of time redirecting our children from manipulating situations because of their ASD (kids will be kids ASD or not), so why would I allow ASD parenting to define, limit, or excuse me for anything. I take on what I know that I can handle and my kids can handle and if I am not meeting those obligations I consider my situation and try to make changes. I have not always done this and I do believe that every now and again it is okay to ask: "WHY ME!?" However, cathartic it might be, you won't get an answer and you certainly won't change your situation. I am determined not to lose myself to ASD parenting and I don't think I would be a wonderful role model for my children if I did that. So now I am about to re-embark on my crazy life, I'm going back to work and starting a PhD but I have allies, support, and the strength to do it. If any one of those three things changes then I will cross that path when I come to it.

Tuesday, May 20, 2014

Different Perspectives


Today I went to watch Lachie receive an award at school. Any one who has read this blog would understand how amazing this is. Unfortunately another parent put a little bit of a dampener on the occasion. I walked into the assembly hall just in time to see Lachie's aide scoot through a pile of seated children and land the ear muffs on his head as the first note of Advance Australia Fair sounded. In an instant the fight went from his body and he stopped rocking on his wiggle cushion. This made me happy, she knows my child well enough to act fast where needed. He wore the ear muffs until the song finished then sat relatively still, with the odd stim for the remainder of the assembly. 

On the other side of the hall there was another scene playing out. There was another boy, he wasn't sitting and he had no ear muffs. He was running up and down the aisle created by the rows of children. He was smiling, flapping, and running as if it were a training drill. There were two aides strategically placed, one blocking his entry to the front of stage and one blocking his exit from the hall. The other kids were watching the assembly, no eye lids were bat, this was his usual routine. Occasionally when his vocal stimming got loud he followed the aide outside where I could see him doing laps of the adventure playground. This was a well oiled machine and it was not hurting any one. 

A father sitting next to me tapped me on the shoulder and said, "Why don't they restrain him? where do crazy kids like that come from?"  I held back a swear word and the temptation to lie and tell him he was my child just to see his reaction. I instead said, "He has special needs."  He asked me to repeat myself and this time I said it more forcefully. He didn't really answer. I was so disappointed that my perspective was so different to his. I hope that one day people see that these teachers were managing the situation in a non-confrontational, non-aggressive, and highly skilled manner. I wish people would sit back and take another perspective before they speak. 

Monday, April 14, 2014

Relax....


How many times in my life as an ASD parent have I been told to relax, look after myself, and been told the old "oxygen mask" analogy? Well, lets just say that if I had a dollar for every time, then I probably could relax a little more. Although I appreciate the sentiment it just isn't always possible. One thing that has become quite apparent to me lately though is that looking after myself doesn't just mean go and do something fun and relaxing. Looking after myself means, not looking after others unless I really have to (i.e., my young children). I recently posed a question about not coping with the issues of others when we have so many of our own from day to day. I think it came out wrong....What I meant is, I think ASD parents have so much experience with the more extreme parenting situations that may only come up for others from time to time. So it is only natural that when they come up, we might be approached to help. Those things I help with readily, if they are bigger issues it is generally more a case of lending an ear with the person we are talking to needing to seek some more "official" help. What I think I get bogged down with are the little things. It is hard for me sometimes to sympathise with people, especially if the issue is something that is not permanent and is maybe not the worst issue they will go through in their lifetime with their children. It's really hard for me to sympathise with a parent upset over something that I might see as a developmental milestone for my kids. The thing is that lately I have realised that it is not others doing this to me, it is me doing it to myself. I jump in to help people, it is a part of who I am. Sometimes I need to take a step back and look after myself.

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Tuesday, April 1, 2014

Just keep climbing: Optimism and resilience

                         
Optimism is not a skill that I really posses. I'd hazard a guess that a lot of Autism parents have somewhat lost their sense of optimism. See, we are almost trained by our children to plan for problems long before they arise. I think that with time we see and expect problems with every situation. This week Lachie understood for the first time ever, through sad circumstances that he is different. The idea of being different broke his heart and when I left him at school, I was very pessimistic about how his day would go. He proved me wrong. He taught me something I'd never considered before, how resilient he is, how resilient we are. We have, like many ASD families, been through a lot but we get through it. I don't know that optimism is something I'll ever be good at but resilience is something I will remember from now on. 

Friday, March 14, 2014

You Feel Exposed

Today I got a little hot under the collar after reading a blog post by someone I admire. The author did nothing but support me and explain his post and why he posted it. The crazy thing is that it wasn't so much the intent or his thoughts that upset me, it was the feeling of being exposed and vulnerable. I think it is similar to the way you feel as a new parent, you don't really know if you are doing everything right and you tend to pick up on what other people are doing and feel like you are maybe failing at some aspects of parenting because your child doesn't: sleep like that, breast feed successfully, has not toilet trained or taken their first steps. The thing is, when you parent children on the spectrum you have information, advice, ideas, and research shoved at you 24-7. It makes you feel exposed. It takes a long time to not feel like you are doing it wrong because you have never put your child on a gluten-casein-blah-blah diet. No you haven't tried the new snake oils, sensory technique, therapy, or read the latest blog opinion piece. I liken it to having a baby with a sleep problem, but it is permanent. That is the kicker! I think it was a line that started with "parents need to...." sure there were other meaningful words there, I'm sure there was, he is a great writer, he is a kind man, but I couldn't really read on with any objectivity. Sometimes all we need is for someone to say, "How are you" and follow it up with "You are doing a great job". Everyone weighing in with their opinion stings at times, regardless of the intent. Spectrum or not, every parent that manages to love, nurture, and support their child is doing a great job.

Wednesday, March 12, 2014

Choosing Which Blogs to Follow: Support Found in all Kinds of Places

So everyone is different but there are a few blogs and their accompanying Facebook pages that you might like to consider following if you have an child with Autism (apart from my own of course). Before I list them and my reason for loving them I want to describe my experiences with internet support groups. Many years ago when GI Joe was diagnosed there wasn't as much internet social networking as there is today. I joined the local Asperger's network as it was the closest one to us and was made up of a lot of very experienced and lovely men and women who had children in their teens. I wanted to get advice from those who had been through the early years and gain insight into possible future challenges. The internet grew and a bulletin board was created. I struggled with the board but I stuck around because of the people that I truly knew. I have joined a few online groups since then but for risk of being a little controversial, I found that some (possibly un-diagnosed) individuals often initiated fierce and upsetting debate that defeated my purposes for being there. More recently I have enjoyed reading some more light hearted blogs. These writers are brilliant in that they manage to entertain but offer real support and make you feel like you are not alone. There is one maybe more serious (plus a shameless family plug) in the group of my favourite blogs but she is there because I can relate to her and I just feel a sense of fierceness in her writing, a fierceness that is all about love.

So here's my list:
Mostly True Stuff
Lexi "sweatpants" Magnusson introduced me to the sweet relief of humorous and supportive blog reading. She is funny but sprinkles her blog with the odd serious, profound, and thought provoking post. She gives parents permission to feel the way they feel, and that is priceless.

Autism With a Side of Fries
Funny, she's so funny. She just seems to pluck witty thoughts out of thin air and turn them into posts and memes than any ASD parent can appreciate. Serious stuff that you ponder on and worry about, in a way that is not crass or disrespectful. She laughs at herself and  her situation and that is a skill many ASD parents need to get by. She also posts questions for parents.

Another Effin Autism Blog
What started out as a blog to vent on, has turned into a relatable and hilarious account of autism parenting.

My Ausome Son
A little bit more serious but her school battles and homeschooling adventures remind me of my own experiences and she is incredibly kind and sharing. She is the fierce one!

Autism Daddy
Gives an often funny and relatable dad's POV. He says it as it is and I like that.

Miss Molly and Asperger's
This is my lovely cousin. She gives insight into her experiences as a girl with Asperger's which is always valuable for parents.



Sunday, March 9, 2014

The ASD Market

There are so many great products and therapy tools on the market that can help children with Autism. I came to a sad realisation today that many people have caught on to the benefits of certain things, slapped a therapy tag on it and upped the price to beyond reasonable. Not only do we need these things for our kids, we often need a lot of them. A Labrador like our gorgeous Luna could easily take $35000 to train, a simple, tiny little chewable pendant could cost $20 and need replacing multiple times. I was even shocked at the cost of some simple weighted products. I have no worries when parents make and sell these necessary items to raise money for their own child's therapy but there are some tips I would like to pass on. 

1. Although a therapy pet, properly trained is highly valuable, a well trained pet of any kind has benefits. We have three beloved dogs and I think at times they give us all an ear and a cuddle. I don't buy in to the lack of empathy debate with ASD but they can teach loyalty and give much needed companionship and love. Our dogs love and are fiercely protective of all our kids. 

2. $2 shops and National Geographic, sensory tools can be found in many places. I've bought the most expensive tools and have found that they last no longer than the cheap stuff. Stress balls in particular need to be replaced often here and chewy stuff. I have purchased some food grade silicone and will start making my own soon. 

3. Weighted products can be achieved with cheap materials, rice and fishing weights. If you don't sew, a pillow with a quick unpick in the corner, a bit of stuffing pulled out and some rice and weights is said to be just as effective.

4. A laminator, free clipart from Microsoft Word, some cheap cardboard, and a printer can make routine cards. Rolls of magnetic tape or Velcro can make them stick to things. A cheap manilla folder, with contact on it and magnets or Velcro can make it portable. 

I'm sure there are plenty more do it yourself products out there. I find a lot of inspiration from Pinterest and if anyone has more ideas, feel free to share belowin the comments. I'm sure there are some clever parents who have come up with ways to tackle the never ending cost of obsessions too.