Dirty Shoes

Join us with our journey through Autism Spectrum Disorder

November 21, 2012 November 21, 2012

I know, I know. You don’t have to say it and neither do I. Let’s just say that procrastination + a super over-flowing plate = blogging getting pushed to be a back burner activity. Let me try to play catch up while I have a chance to. I will probably rant a bit and talk about this and that and make a ginormous post. So take a minute, go to the bathroom, get a drink, maybe a snack and then come back. We’ll be here.

Where did we leave off? Oh yes, Halloween! Lately, when we are going to be having a lot of changes in schedule, I try to get her full attention and explain to her what the day will be like, what we will be doing and what order we’re doing it in. I’m not sure if it has been effective yet, but I will continue to do that for her! ASD or not, I think every child should be informed and not just toted around mindlessly. This Christmas break should be interesting for her and hopefully we will get through it smoothly.

A quick thing about her meds, she is on them full time, 3x a day and when we miss a dose, we can tell! Also, I tried to start weening her off them by cutting 1 dose in half once a day and it was bad. I don’t think she’s ready to be cut back on them, which is a bit upsetting because I’d love for her to not be on them! However, I am thankful she has them, because the things we are experiencing now with her behaviors would be much, much worse. I have hope that with time and growth she will be able to cut back on them, I just don’t think that right now is a good time, especially since we’re heading into the holiday season.

Halloween went great, she got herself ready and came walking down the hallway with her costume on, her broom between her legs, holding her lantern and her cauldron and her kitty purse and then realized that she didn’t have enough hands to effectively hold everything! I hooked her pumpkin lantern to the end of her broom and we were ready to go!  I got a bunch of glow sticks so we could wear them like necklaces and she really enjoyed hers because they gave us all magical powers. We had a good run going with the trick or treating and we got to the last road in our little neighborhood and it was the most alive one yet! Lights, music, people carrying on, tons of decorations! Me and Daddy were excited to go down a not so drab street like the others…but Selena would have no part of it. She was done and wanted to go home and since we were going out for her, it was time to go home. For her it isn’t about the candy or going out late. It’s about Selena getting to dress up and go into a fantasy world where she is a good witch that spreads her magic and says hello to everyone.

*****Super side note! I love her echolalia at times! Especially when we are hanging out with Erin and Gareth, because Gareth is British! She blatantly tries to repeat how he says things, it is just too cute. It all started with Harry Potter – magical things, cool accents, and the general awesomeness of it all. It went from repeating simple Harry Potter lines, to using the accent with everyday conversations and I won’t lie, I helped perpetuate it because I get a bar-wenchy kind of accent when I try and it’s just fun. So back to Gareth. We were helping them bottle up some beer one evening and Selena was in full swing, just carrying on and repeating anything he’d have to say. It was a riot!!! She did pretty good too. Having behaviors and quirks that are brought on by the autism is not always a bad thing! Try to take these things and turn them into a positive behavior. Granted, not all of the behaviors associated with autism can be manipulated into a positive light, but some of them can and you should take every opportunity to show your child that they may have something going on with them, but they are still amazing and unique. Gosh I’m just ranting today, here goes another rant.

Disciplining a child with Autism is so absolutely confusing and frustrating (for both parties). When do you discipline them? When do you give them support, love and encouragement instead of a spanking or time-out? How do you know if it’s getting through to them? How do you know if they are acting out because they want to or if it’s just a result of a sensory overload? I have went over a few instances in the past, where disciplining was so ineffective but I didn’t realize that until much later. Now when she has bad days and does things wrong, I try to get her to communicate with me, which is usually a dead end and only because if I ask her how she was feeling, all she says is that her heart started beating really fast and it was going crazy. Anxiety attack maybe? We’ll keep working with her and hopefully we’ll find something that works for Selena. Her behavioral pediatrician said that when she does all these things at school: the meltdowns, lashing out, being disruptive, not doing her work; that we should support her when she gets home, be there for her and ‘gentle’, soothing, and promote a relaxing environment because she is so emotionally drained from a rough day at school. You can visibly see that she’s had a rough day, her eyes are a bit swollen or a bit sunk in and she has dark circles around her eyes and she looks like she had been up for days. I can agree with the pediatrician to an extent. If she’s have genuine meltdowns then yes, we should be supportive and not be rough with her. However, if she is consistently being disruptive, trying to cause physical harm to anyone, or anything along those lines, I will try to at least give her a good talking to and try to get through to her. If you have any suggestions or have experienced this and know of a way to effectively get through to her, please please please let me know!! 

Alright so back on track with what we’ve been up to. Halloween – check. Oh Girl Scouts!! Selena is really enjoying her time as a Girl Scout and she got invited to her very first birthday party!! I remember times when I have cried because she still hadn’t been invited! We are doing crafts, bonding and having a blast! We are about to start making some homemade ornaments so we can deliver them to a local nursing home. Selena has earned her light blue petal, for being honest and fair; her dark blue promise center, for gaining the basic concept of the Girl Scout Promise; her violet petal, for being a sister to every Girl Scout and we’re working on her orange petal, being responsible for what I say and do.

We have started doing chores around the house and for every chore that gets done, she gets $0.10 per chore done once a day. We have a rotating ‘chore schedule’ that varies week to week with some basic chores that are done every week and a few that get rotated between the girls. They are really enjoying it. Let’s see how long it lasts! I have a banking notebook all set up with their Savings Account balances, their Allowance balance and our Family Fun Account balance. When they get paid, they get to keep all of it in their allowance jar, but as soon as they want to ‘cash it out’ then the mathematics begin! 10% goes into their savings and 10% goes into the family fun account and they get 80% to do with what they want. It was so cute, Emma had about $7 in her hand and she was counting it all as Mahja asked her what she was saving her money for and she said, so I can buy something at the Dollar Tree. Oh how cute, if she only knew she could already buy 7 things there. I love their innocence. I know that right now Hope likes to do chores because she gets sticker stars, Emma feels like a big girl and Selena like the stickers too, but I am hoping that as time goes on they really gain a concept of saving money and being responsible for what they do, how they take care of themselves and their things.

Our garden has begun! 4 pumpkin plants, a tomato plant (going to get a few more), green pepper plant, 8 green bean plants, 8 broccoli plants, 8 pea plants, 3 healthy basil plants, 2 cayenne pepper plants (one has a super nice pepper on it), 2 cilantro (waiting for the other seeds to perk up), and trying to grow some chives. Selena loves to water the plants and help take care of them! I can’t wait for her to be able to go out and pick some fresh stuff off! Taking care of the plants are part of their chores, not like they need any incentive to help with the garden, they love it!

Thanksgiving is coming up, tomorrow actually and the girls are going to make some decorations for the tables, help make some homemade butter and be great little helpers in the kitchen. Selena is handling this well I think, I am going to go over everything with her tonight so she won’t be so in the dark. She is at Grammy and Papa’s today, hopefully she’s having fun! I’m sure she is. Grammy said something about shopping!! She went over there last night to spend the night so I didn’t have to rush around all crazy in the morning before work, which actually turned out well because Daddy proposed to me!!!! The girls have all agreed to it and Selena said she wanted to have Daddy’s last name and to be a ring girl or a flower girl. How adorable!!

One last thing while I can think of this, remember last year around this time Selena was chewing on her fingers and fingernails, and she almost had to have 3 nails removed and 2 fell off and all that jazz? Well…she’s back at it again and I am trying to do everything to stop her from chewing her nails!! Her therapist at horses gave her some hand play toys to try to keep her hands occupied. However, I can’t let her bring them to school so that leaves the whole bus ride to her disposal. I might have to get the gloves back out again before it gets worse. This year she isn’t chewing her nails, she is picking and chewing the skin by where her cuticles are at the base of her nails. My goodness. This girl just has such a low pain tolerance. Like last night, I get home and she has a HUGE mark over her right eye and a note saying that she ran into another pole or door coming out of the bathroom. I am thinking she hit one of the poles in the bathroom that makes up the stalls. So regardless, she is going to have a black eye for Thanksgiving. She didn’t complain about it at all or anything. So as we’re going to walk out the front door, she walks backward for some reason and smacks the doorknob right into the back of her head. Selena just starts to walk away, I grab her and ask if she’s ok and she told me that she was fine since she wasn’t crying. Daddy got the ice pack and I had her come close to me to check her head out. I told her that she can feel pain and be hurt even if she doesn’t cry. That makes me worried a bit. Because I know she runs into things often and can be clumsy sometimes, I wonder how many times she has actually been hurt, but since she didn’t cry she didn’t think she was hurt. How many times has she suffered through the pain, not realizing that we could’ve helped her?

I promise, I promise, I promise I will try to write more often than once a month. I will make time for you!!

Have a great Thanksgiving and I hope you get to spend it with your friends and family!!

J

Oh and Amy, you are so kind, thank you for power reading our journey and the wonderful things you have said, if you have any insight or have any suggestions, please let me know 🙂 Also, feel free to use our experiences, I’m delighted that our story has helped at least one person!

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One Response to “November 21, 2012”

  1. Amy Says:

    Hello! 🙂 I was actually just visiting your site to get the information I needed to cite your blog in my paper! I was excited to see a new entry since I read the rest the other day. Selena sounds like she has so many typical behaviors associated with ASD, but I really enjoyed and learned a lot from your personal account of having a child with ASD. I found the tunnel vision very interesting, as I didn’t really see anything about that as I did my research! You bet I included that in my paper. I will be back to check in on Selena! Keep those posts coming! 🙂 Thanks for inviting me in to your family’s world…


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