Friday, August 28, 2009

A confession

When I first started this blog, I wrestled with the question of how honest to be. Well, today I am going to make an all out confession. A couple of confessions actually.

Confession No. 1: I am doing an absolutely SHITE job as a parent.

The evidence for this comes from Confessions Number 2 & 3.

Confession No. 2: Sometimes I hate having a child with a disability.

Confession No. 3: I had more tantrums today than my children - and that is saying something! Today should have been renamed 'Interntaional Day of the Tantrum (IDOTT)' - everyone in our house had a turn, and another turn, and get the picture.

So, obviously the most shocking of my confessions is number 2. Now don't worry, you don't need to go out and call DOCS, I love Ashlea and 99% of the time I love her just as she is and don't want to change her. But other days, that other 1% of the she tests my patience.

Today we went to the park after preschool. I have been trying to make a bit more time for fun with the children lately. I feel that we have fallen into a rut of just staying home because it is easier and because we are tired from all our other running around. So I have decided that once a week after preschool we will either go to the park or out for afternoon tea, and because it was a beautiful day today (25 degrees and sunny in the middle of winter - yay for the return of El Nino) I decided we would spend some time outside. We walked to our closest park and Emma and Audrey got straight into playing and having a great time.

What did Miss Ashlea do you ask?
Sit in her pram and chat or sing a song?
Sit in her pram and whinge after awhile because she got bored?
Sit in her pram and scream blue murder from the minute we got there? YES, that would be the one.

SO FRUSTRATING! This is the part about disability that drives me crazy - the sensory issues. Any strange noise, place, smell - anything unfamiliar - can set her off screaming. And there is no reasoning with her. At least with the others I could resort to threats or bribery but none of that works with her. I either have to hold her the entire time or we have to leave. Today I decided that we were NOT leaving. I tried holidng her but that didn't work - she still screamed and it prevented me from playing with Emma and Audrey. In the end I let her scream it out in the pram while we played for awhile. I feel a bit guilty (well I feel like I should feel guilty), but I am sick of having to leave places early because she freaks out.

So there we were at the park - Emma very hesitantly trying out the equipment (she has inherited my anxiety to do with anything more than a foot off the ground), kamikaze Audrey climbing up every piece of equipment with absolutely no fear, and Ashlea...screaming... Fortunately there was no one else at the park so I didn't have to deal with other parents stares or comments about why we just carried on and ignored her.

This is why we don't often go out as a family - not because of the logistics of a child with a disability (although that is an issue) - rather because we can pretty much be guaranteed of an Ashlea meltdown. If anyone has any ideas on how to deal with this PLEASE leave a comment! She is getting too big to be carried around all the time when she freaks out - I need a strategy that will work as she gets bigger. Any advice gratefully accepted!

Hopefully a good night's sleep will mean less tantrums tomorrow - from all of us. All the kids are in bed. I'm going to have a cup of tea and chill on the couch. And tomorrow as Scarlet O'Hara says, is another day...


ferfischer said...

Oh - if you read my blog you know I am FAR too honest. And you know that I struggle with your #2 ALL the time. And just because you hate having a child with a disability doesn't mean you hate the child! I'm not sure anyone would wish for a child with disabilities, and if I could "take them all away" from Cici I probably would. But, since I can't, I guess we will eventually be at peace with her disabilities, or maybe know how deal with them better. Oh, and as for sensory stuff, Cici had a LOT of sensory stuff when we came home - we did the brushing therapy (Wilbarger) and that really helped a lot. Also, weighted blankets have helped too (maybe a weighted vest?) Those have all helped with the sensory, and we can usually take Cici out with the rest of us without her getting too stressed out(she doesn't scream at all yet though). Good luck, and let me know if you want any details on that stuff if you don't do it already!

Lacey said...

You are not crazy. Sometimes I really hate having a disabled child. We have every right to feel that way. Its hard work.
Find something that comforts her that she can take with her. With Tanner, we found that when it storms and he freaks out, we bought him a cheap MP3 player, downloaded his favorite music, and whenever he freaks out, he listens to his music and forgets the rest of the world.

Sarah said... are NOT doing a shite job at being a parent!

I can understand your frustrations at times having a child with disabilities, but you have done such an amazing job with all 3 of your girls from what I can see.

Sorry no advice on the sensory, hope the others can help. Violet has trouble with loud noises but like you do, we generally don't go to places that will be having them.

n0thingbuteverything said...

Oh Alison! Big hug coming your way!!!

For a start, you are so NOT doing a shite job!!! Look at those gorgeous, happy girls! And look at all the wonderful things you do with and for them. Definitely, you are doing an AMAZING job.

Secondly, I also have days like that. For sure. Sometimes it would be just be so much easier if it much easier ;-).

Thirdly, I second the brushing technique and might also suggest you look into Second Skin suits or Theratogs - they are said to have some benefit for some kids with sensorial issues and when I look back, I realise that S's big problems with loud noises and new places definitely decreased around the time he got his second skin suit.

And have you tried using Compic cards - eg showing her pictures of a park, birds, playground equipment etc to try and prepare her a little for what sounds/sights etc she might face? It MIGHT help...

I wish I had more answers, but don't really other than to suggest you google 'sensory integration disorder' - I am not suggesting that Ashlea has this, but there still might be some ideas there that could work for her.

Sending a huge hug your way and applauding your honesty.


Big brother, Little sister. said...

Alison, I really hope there were less tantrums over the weekend. I understand your frustrations, parenting is very hard work, parenting a child with a disability is often really really testing on everyone especially the main caregiver. I am really glad you stayed at the park for E and A's sake, and hopefully in time A will get used to it all and actually enjoy it. Can you take her walker there for a more positive experience? ( naturally you would need another adult) and then maybe they could take her home when she is done and the therefore the park has been fun and maybe next time she will remember her positive visit? have you got a sling you could pop her in? so she feels safe and close but you have your arms free? ( might be a bit hard on the back thou!) hope you get to the park again really soon, great to get out in a different environment for you especially xx Bron