6 things I wish I could explain about myself as a "Special Needs Parent"

I read an article today, called 6 Things You Don't Know About A Special Needs Parent. It was a great article. It started me thinking about what things I would like to explain to others about myself to help them understand me and maybe give an insight into why I sometimes react differently than expected. As I thought about it I realised some of my list is the same, and some is different. Here's my list of things that I wish it was easy to explain about myself as a parent of ASD kids.

1. I am always tired and under stress

I read an article recently that cited research that had found parents of ASD kids experience more stress than parents of children with other disabilities. I found this validating and depressing at the same time. I honestly don't feel like I ever really relax. I might look relaxed. But I'm not. When I am with my kids I am always in a state of heightened alert. I am listening for the sound of the front door handle turning in case G is trying to leave the house. I am listening for the change of tone in a child's voice that indicates I need to intervene before someone loses it with a sibling. I am aware of who is in which room with whom so I know where to most concentrate my listening. I am planning when I need to make announcements of upcoming activity change to avoid surprise induced meltdowns. I am noting who has had what time on the computer and tv watching so that I know what stage of sensory arousal each of my ASD kids is likely to be in (they find computer time and short periods watching tv calming so I use it as a method of mood management). I am constantly interrupted by my ASD kids who need to tell me things to see my reaction so they can decide what their reaction will be. I have to explain things to them that most children just understand, like "if your brother/sister says stop you need to stop", and " people don't like it when you touch them on the shoulder 10 times in a row just to see what they will do"even when they are 12 years old and should know by now. And that is just at home. If we are out it is even more complicated. I have to watch for signs of sensory overload so I know if G is likely to run or hide. I have to be careful to place myself in a position that protects her and L from being bumped if we are walking in a populated area. I have to be aware of dangers that they won't perceive and warn them (simple things like move to the side so other people can pass as well as big things like don't step onto the road until we are all ready to cross) even though they are old enough to know. If I am at someones house I need to know where exits are. If I am at a new park, I need to assess how far away they can be from me before they are too far for me to stop them from doing something undesirable, as if they were a newly walking toddler. When I am not with them I am wondering if I left them suitably prepared for my absence and checking my phone in case I missed it ringing. The only time of day I get close to relaxing is when they are all home and all asleep. This is my most mentally productive time of day. Which means I usually stay up very late when I would be wise to be sleeping, but I can't make myself sleep yet because my mind has been so busy on them all day that it needs some time for me.

2. I feel misunderstood and alone

In previous posts I have talked about some of the things I do that may look a bit weird. That is only one aspect of how I feel misunderstood. I'll try and explain. I'm really hoping no one finds this one offensive or upsetting. Here goes. 

We parents like to "compare notes". We tell stories about our kids and the things they do. We ask questions like "how did you survive the school holidays?" Let's talk about that one.....  I prefer the school holidays. L & G are so much more calm during the school holidays. They don't have to conform to other peoples idea of a good routine. They don't have to go places that are loud, bright and crowded everyday. They don't have to wear clothes that are uncomfortable simply because they are expected to. School holidays are a relief for me, and school resuming is a dreaded event. Let's talk next about how we parents tell stories about our kids and the things they do. I've sat in groups of parents and listened to them tell about how they are proud of their child achieving that trophy or that level. Some days I am just proud that my daughter didn't hit anyone. If I said that without explanation it would sound bad, and I really don't have the energy to explain most of the time. So I often don't join in those discussions (unless I am with people who really know me well), which counts out a lot of small talk options in a group of parents. And it leaves me feeling like no one has any idea of what my life is like, because when sit in a group and smile and nod along with everyone else, it is assumed that I have similar experiences.

3. I feel jealous of you

When we parents sit around and tell stories about our kids and how great they are, I feel a bit jealous of you. I feel jealous that you don't have to afford therapy so you can put your kids in sport clubs. I feel jealous that your kid is capable of playing team sport. I feel jealous that you can go and cheer without worrying what your other kid might be doing, or feeling, or melting down about. When you tell me stories about how your child has been throwing these really bad tantrums lately, I wish my kid would throw tantrums like that instead of the intense, overwhelming complete loss of control, self harming meltdowns that my child throws. I recognise that those tantrums are really hard for you to deal with, and I feel compassion for your struggles, but- honestly- I wish they were my struggles too. It's not that I don't care about you, or that I don't want you to talk about the things that happen in your life, I just wish my life wasn't so..... complicated.

I feel jealous that when it is time for your child to start kindy or high school, you talk about it a bit with them and send them to the few regular orientation activities, and everything goes well, while I have to do months of planning, apply for special funding to make sure the school will be able to meet my child's needs, organise for my child to attend the extra orientation activities for "special" kids, and deal with the prolonged period of anxiety the process induces in my child. 'Now, Michelle', you might be thinking, 'I get nervous when big changes come up for my child, and so do they'. Yes. I know. I feel that for my three "normal" children. I'm telling you- it's different.

 I feel jealous sometimes that you have no idea what I am talking about and that you have the luxury of misunderstanding me. And if you think that sounds unreasonable, as I sometimes do, refer to number 1 in my list.

 I feel jealous that is it perfectly reasonable for you to expect that your child will grow up and move out and not need you anymore, and that for me that is something I have to be prepared to never experience, even though I will do my utmost to make it happen.

4. I worry a lot

Here is the list of things I worried about before 9 am today. 

When I woke up I worried that Hubby may not have locked the front door on his way out to work and they G may have left the house without me noticing. 

I worried that I had been premature in assuming G wanted her toast cut in rectangles and that if she wanted triangles instead I would have a meltdown on my hands before 8am.

I worried that because I had overslept a little G wouldn't have time to choose the exact clothes she wanted and I would have to choose between rushing her and risking  a meltdown or running late to drop I & K to school. 

I worried that I had forgotten to remind L to stand where the bus driver would see him and he might miss the bus again.

I worried that it would rain in the afternoon and G might not be able to bounce on the trampoline to release the stress she would be feeling after we tried a new playgroup. 

I worried that the Occupational Therapy centre might not be able to book us in with the same therapist as before and G wouldn't cope well with someone new. 

I worried that I didn't check L's shirt to make sure he didn't have the top button done up and that he might get teased because of it.

I worried that something would happen to me and my kids would have to figure out how to cope with no mum and my Hubby would  have to raise them on his own. I worry about this most days. 

I worried that I had forgotten to cheek if L had done homework and he may have forgotten something due that day and it would throw his whole day into a state of anxiety. 

I worried about how G would cope at the new playgroup and about whether she would be able to be with new kids without conflict based on misunderstanding non verbal cues. 

I worried about whether the park at the new playgroup would have many places she could hide in.

I worried that once again poor I had received none of my attention all morning because I was too busy getting the others ready, and that I had raised my voice at K for not getting ready quickly because I didn't have time to help her either. I worry about things like this every day too....  and  hope that my "normal" kids are getting what they need from me. 

5. When we are face to face I will do whatever I can to hide all of the above from you so that I seem like any other parent

It's simple- I don't want to talk about my struggles all the time. I feel like if I didn't hide all these things from you I would dominate every conversation and come across as a completely self absorbed, overreacting, neurotic mother. I often feel like one even when I do hide all these things. I want to feel like any other parent. I realise it is possible of course that all parents feel self absorbed, overreacting and neurotic, but I stand by my reasoning nonetheless.

6. I am incredibly proud of all my kids

I don't like the word disability but I use it  because it is the word society uses and understands to describe my kids. I don't see my kids as having a disability. I see them as having different challenges than most. And I am so very proud of them. My kids are all intelligent, funny, tenacious, tolerant and just plain awesome. My kids with ASD work so hard to be what society wants them to be even though it is harder than society will ever understand and it costs them more than society will ever acknowledge. I am proud of my "normal" kids because they are working hard and growing into amazing, strong, accepting and compassionate people even from within this crazy household we exist in. Maybe because of it? I mightn't have glamorous stories of how my kids won this or that, or that they topped their class 5 years in a row, or that they have so many friends, or all their teachers love them. But I know the challenges my kids all face. I know the effort they put in to being a friend to others, looking after people who need looking after, and doing their best even when they feel like giving up. That's enough for me. 

So, there it is. Hopefully my list won't put people off from ever speaking to me again. Hopefully it won't alienate me from people that I honestly do care about. I just want somehow to say that this is what life is like for me. So if I sometimes seem distracted, if I am a bit unreliable, if I forget things that I should remember because they are important, it's not actually because I don't care about what is important to you. It's just because I am parent of kids with ASD. I don't want you to stop telling me stuff. I don't want you to feel sorry for me.  I don't want you to think you can't ask me to do stuff or be part of a project. I just want you to know that my brain is full and busy. As much as I like to think I am a super hero I'm not. I love to do all the stuff you do, but I'll often do it in a way that is a bit different or unconventional. I'm not trying to excuse myself. I'm asking you to understand, be patient, remind me of stuff, and let me be part of your life in a way I can manage. One day I hope I'll have more energy to offer, but for now I'm doing the best I can!