This is a link to 10 Key Things To Do For Your Child With Autism shared by the awesome Ellen Seidman over at Love That Max. It was written by Kerry Peterson, Board Certified Behavior Analyst and Director of the TrainIn Program at Kaufman’s Children’s Center. It’s so easy to get overwhelmed, especially in the beginning, so read this list and take one step at a time.
Monthly Archives: January 2013
The other day after school Bailey jumped in the car squealing with excitement and announced that her class earned a “pajama day”. We discussed the different things they get to do… bring a stuffed animal, read to their stuffed animal, etc… I laid it on pretty thick how jealous I was. So Bailey suggested I dress up in pajamas and pretend to be a new student. I said “yes! I can put my hair in pigtails, put on my pjs, and bring a stuffed animal. I will say I’m a very tall new student!” I then asked if she thought they’d buy it. Her response:
“Well, it depends on how much it costs.”
I love that girl.
Wow, it’s been a long time since I wrote here. I keep hearing that Steve Miller Band song in my head. I sort of expected writing over the summer would be difficult having Bailey home all day long with me. I find that it is extremely difficult for me to sit down and concentrate long enough to write something meaningful when I’m constantly up and down and up and down with her. Besides I try to use that time with her for one-on-one as much as possible. Then school started and I’m sure everyone can relate to it being an extremely hectic time. Then comes IEP planning and meetings and in-between emails and discussions with teachers about this and that. My days somehow have just gotten filled up with busyness. And some days they get filled up with laziness, when THINKING is the last thing I want to do. There are other days when I want to sit down and write but I feel like nothing but negativity would come out and I just don’t want to put all that out there. Maybe I should, maybe it would help… but I just haven’t wanted to dwell in it long enough to sit down and write about it.
Our summer was short and sweet. I tried to plan a fun outing once a week. For the most part I succeeded. A trip to Longwood Gardens, a tour of the Herr’s Snack Factory, a day at the pool, things like that. Bailey really thrives when we do things like that together, just me and her. She loves exploring new places, learning new things by doing, and being in wide open spaces. There were days when Bailey got in my bed in the morning and we snuggled and played computer games together. Days when we didn’t emerge from my bedroom until well after noon. Those were awesome days too.
I was very optimistic about 3rd grade because she had a great couple of months in 2nd grade after we moved here. She was happy to walk through the doors everyday. When I picked her up I heard stories of her great successes throughout the day. She honestly enjoyed school again. But from the time I dropped her off for Back to School camp (a 3 hour camp getting to know the teacher, classmates and classrooms) in August and she would barely acknowledge her new teacher, my optimism slowly started to roll downhill. She has fought me tooth and nail on just about everything that is school related. She has been extremely defiant and disrespectful to her teachers and her aide, she resents the fact that she even has an aide, and she pushes away most attempts by her peers to be friendly. She has become more and more aware of her differences and resents herself for every single one.
Bailey’s self esteem has gone downhill as well. While I may go a week without hearing the negativity, there are very long stretches of “I hate my life” “I hate myself” “Everyone thinks I’m stupid” along with many others. I honestly expected this. But years down the road. Certainly not at 8.
My biggest personal struggle in all this is I feel like we are pretty much in limbo. Again. Bailey isn’t receiving any services outside of school because we were pretty confident that they just weren’t needed. We’re way past the early intervention resources. Don’t get me wrong, I don’t think Bailey would be as far along as she is today had it not been for the intervention specialists working with her in Kindergarten and 1st grade. But we’ve reached a point where new challenges are popping up. She’s changing, her view of herself and the outside world is changing, what she’s experiencing is changing. Her peers are starting to pick off the differences they see in each other. Bailey’s quirks are under the microscope. I’ve determined that right now, at the very least, she needs some sort of therapy to continue teaching her coping strategies. I also need help with teaching her the skills to cope with what comes her way. She still needs constant social coaching. And she definitely needs someone, other than her mother and father, to help her see what a wonderful kid she is. But, we are in limbo. I don’t feel confident enough that we’ll stay put long enough to start a relationship with a therapist due to my husband’s job situation. She’s been uprooted and plopped down so much over the past 4 1/2 years so how can I introduce her to someone, to expect her to develop a trust with, only to say ‘we’re off again!’ Not only that, I want so badly to get her in music lessons. I think she would absolutely thrive with it. But with not being sure what next month will hold I feel like I would be starting something that can’t be finished. At least not here. I’ll either shell out a lot of money that will be nonrefundable, or she’ll have a wonderful instructor who we’ll have to snatch her away from again, or the lapse in ending here and starting up wherever we end up would cause her to lose interest.
Now you know why I haven’t been too keen on getting on here and spilling all this out and dragging you all down with me?
It’s not all bad though. Bailey has days that are a great success. She has short-term and long-term goals that she works towards and is a part of the process in picking her incentives. She helps to decide what “signals” she can use with her aide when she needs some space or a break. She is making great strides in group to build her conversation skills. She had a recent playdate that was a success. She is becoming more aware of other people’s moods depending on their facial expressions (huge!). She has also begun to show genuine empathy when she sees someone is down (again, HUGE!). I have no doubt that she has always felt empathy but knowing just how to show it, as with most aspies, has been a challenge for her. She’s gone from the 5 year old that would blankly stare at me for a moment while I was sobbing then leave the room or laugh hysterically if I accidentally hurt myself, to the 8 year old that sees the distressed face of her aide and asks if she is the cause of her not-so-great day or runs to put her little hand on my back after I’ve slipped down the stairs (again). There was also the other day when I picked her up from school and she proudly announced that she was going to try sitting on the other side of the car. This was a really big deal since the seatbelt goes the “other” way and feels so weird to her. After a little squirming and protesting she settled into it for the 8 minute car ride home. She isn’t interested in trying it again any time in the near future but I have to give her a big round of applause for stepping so bravely out of her comfort zone. So, it’s not all bad or a bunch of “nothing”.
Oh! And on a personal note, I’ve gone back to (online) school! I’m working to get my Human Resources degree, which is the field I was in before Bailey was born. I was good at it and had successfully earned my PHR (Professional in Human Resources) certification. Then I had her and everything else melted away. 😉 I figured it was time to start doing something big for myself.
So there it is. The good, bad and ugly of my absence from my blog. One thing I do know is I do enjoy writing even if I’m not great at it. It helps “get things off my chest”. It helps me stay connected to people who are going through the same things. I promise myself I will do better at setting aside this time for myself and anyone else who wants to listen.