Today was a patience testing kind of day. It takes an extraordinary amount of patience to raise a child with autism and I have a lot of it, most of the time…but sometimes, I wonder, do I have enough??
She’s starting to understand more and more what she’s supposed to do and what she’s not, but sometimes the temptations are too much for her and there she goes into everything again, or not stopping to play outside to come in and go potty. She’ll go months and months doing great and then once she does it, seems like she does it over and over and over! She listens well….trick is, as long as I’m patient and firm, together! She can totally tell now when I’m getting frustrated, oh dear!
Abbey has made so much progress communicating and with so many of her really hard behaviors, but why does it seem like when they make great progress in one area, another area gets harder?
It seems like Abbey’s sensory world just gets completely out of control, out of this world crazy sometimes, and we’re seeing it now more than ever! Is it just because she’s so much bigger and older now? She has broken a very long list of things in her house like her window, holes in walls, our couch, her bed, more chairs than I can remember, just to name a few…and none of them when she was mad! She broke all of these things just rocking, bouncing, jumping around in big, huge movements. We have swings inside and out, exercise balls, stuff to chew on, sensory stuff all over our house for her to play with…but it’s just not enough. Will we be able to find something that is enough? I don’t know, but we’re working on it! We’re working on another outside trampoline as her inside one just doesn’t seem to do much for her…but, problem is, she’s so heavy and so rough on things, we need a really good, safe one…yes, expensive, just like everything Abbey needs and breaks! Well, more praying! AND, as we work on these really hard things, we’re just gonna keep on focusing and celebrating the great things that are happening, ’cause that’s what it’s all about!
Yes, Abbey’s loud and does a lot of odd looking things. She’s nonverbal and highly affected by autism. I know the things she does can be really embarrassing for her siblings sometimes. As they get older, I think it gets a bit easier. I’d like to think and I’d hope that her siblings would agree, though, that the Abbey has a lot to teach people. I think she’s taught us all a lot of life lessons and brought a lot of sunshine to our lives!
Ugh, sensory issues are so hard! Just when you think, just maybe, the days of picking tiny pieces of non-edible things out of their mouths is over, it’s not. The need obviously comes and goes, for Abbey anyway. Pica, or chewing on all those non-edible things, has always been a problem for Abbey. We go through so much Spry gum, it’s crazy!
We’re working on getting her a big trampoline again, realizing how much she really does need that outlet and that sensory input. Finding the sensory things that help them, can make such a difference and teaching them to learn to ask for those things is imperative!
Here’s Abbey trying to tell me something! The video of her is a bit hard to hear, sorry, should have turned up the volume on her iPad. I think you should be able to make it out, though.
She’s been doing a lot of talking lately…with her device, which has been very exciting! She uses Proloquo2Go to talk to us. And, she’s bringing it to us, which I explain in the video, is huge!
We used to use a visual schedule for mornings and it worked great, first on her Dynavox, then on her iPad with Proloquo2Go. We haven’t had to use it in years, though, because she knows the routine and will even willingly do things out of order.
Some mornings are a bit hard to get her out of bed, she’ll pull the covers up over her head…but not usually for more than a few minutes, then she’s up. Some mornings, she wakes up at 4 or 5, leaving mom wanting to pull the covers up over her head! But, 99% of the time, she’s happy to get ready, knows just what to do (although still requires my help to do some of it) and is happy to go to school! Long gone are the days that I thought we’d never get out the door…and some mornings, we didn’t!
Click below to see US talking about it, ok, well, I’m doing all the talking, but Abbey obviously is agreeing with me!:)
What a champ Abbey was this morning! Nothing went the way it always does, routine went right out the window, but she went with the flow, no problem!
Of course routines are important for our kids for many reasons, teach them what they need to do and in what order, and to decrease their anxiety by knowing what is going to happen…but days like today happen! It’s important to mix it up sometimes so that when nothing goes as planned, they don’t fall apart!
It so exciting when you find something that motivates your kiddos to communicate!! It doesn’t come easy, but I think, gets easier as they start learning and start realizing how it works for them. Some days, she’s a communicating machine and other days, it’s like pulling teeth. It all depends on her mood and what she wants, how motivating it is for her and how motivated she needs to be that day. Some days she needs some prompting and other days, she just goes and goes…those days make me so happy!
So, this was a pretty good day! She was happy and very motivated by candy! This video shows the progression from the beginning, starting with me showing her what to do, to her figuring it out and going with it! Candy is extremely motivating, as you will see! So cute! I used one of the ‘expressions’ on Proloquo2Go for ‘thank you’, so that’s super cute too…
Click the video below to see her treat or treating, in action!
Yesterday turned out to be a fun day, well most of it! We went to a ‘trunk or treat’ event at our local autism center, The Responding to Autism Center. My oldest son with high functioning autism put on ‘his idea’ of a costume and went to help out with one of the games for the kids, but ended up hanging out with his friends, from social skills classes, that showed up, for most of the time….which was really neat to watch. My oldest kiddo, Maggie, almost 18 now also came and helped out with games. I was so impressed with all the teenagers there, how great they were with the kids. I saw lots of kiddos having a great time and a couple struggling…but a nice safe, understanding place to do it in!
So, Abbey participated in a new way this year, which was very exciting! I added a folder to her Proloquo2Go on her iPad with the buttons, ‘trick or treat’ and ‘thank you.’ She caught on VERY quickly, that she received candy when she did this and had a big smile on her face….stay tuned for a blog post about this, WITH a very cute video! And, yes, my Proloquo2Go peeps, I added the ‘thank you’ with expression, so super duper, extra cute!:)
Click below to see my video diary post for today and hear what I have to say about taking opportunities!!
I get asked all the time, what has helped us, what has helped Abbey?? I tried to delve into some of these things in my other video diaries…but I kept thinking of a few more things that felt too important to me to leave out! So, here it is, I put it all in a LIST! Here are the most important things that I feel could help many others dealing with autism. Helping others along this journey is what keeps me going…so please share, what has helped you? What has helped your child? And, how has my LIST helped you?
Autism can be really hard. Trying to figure out what can help your child can be really hard. Trying to narrow down what to do first can be super hard. Then, trying to fit it all in, on top of everything else, can feel impossible! I get it! It can be so overwhelming that, if you’re like me, the days pass by and you don’t work on the things you want to. It’s so hard to get past that overwhelming feeling and just do it!
I get asked all the time…“How do it do it?” Well, through all my struggles and still always feeling like I need to work on more balance, here’s what I’ve figured out, so far….
abbeysvoice 