Friday, August 15, 2014

Julianna, Part 13: We're all caught up!

So in the last post I talked about how Julianna got a 1:1 aide written into her IEP. This was a huge milestone as far as what I have been able to accomplish for her in the school setting. I can't say enough good things about 1:1 aides, and especially the one she was assigned to, and still has now. Her aide has been hard-working, motivating, patient, reliable, responsible, informative, helpful, I could go on and on. Without that aide, Julianna would not be able to attend public school and reap the benefits of being around regular peers who model appropriate social behaviors for her. It also takes a lot of the worry away from me. The first couple of years, I worried about how she would do on her own at school. She doesn't always know where to line up, or follow procedures, or stand up for herself if she were bullied (or something even worse). Having an aide be her "shadow" means someone is always there to stand up for her in those situations, and to give Julianna the tools to improve socially and academically. I feel very fortunate that Julianna is starting her third school year with the same aide who has become such a support to her. She has made great progress in school and because I have things set up for her there, I don't have to worry anymore. I can send her off to school, confident that she will be in good hands. A huge burden lifted for sure.

Now this aide isn't the only person who has been supporting her the last few years. We also have a wonderful respite worker who is provided by the regional center who has been helping me in the home, 30 hours a month, for almost 3 years. What we know about Julianna is she will behave very well in school, and then come home and unleash all that pent up frustration and anxiety on the family, usually in the form of major temper tantrums. This means we have been living with temper tantrums for almost 9 years (she started around 2 years old). I have other demands on my time and cannot always spend that one on one time that she desparately needs and thrives on. Our respite worker can be there for her in that way to engage her in activities to keep her focused and happy. The tantrums still come, and we are working on it, but it is such a relief to know that I also have someone in the home to help as well for 30 hours a month.

And I can't stop there, either. We also just began ABA therapy again a few weeks ago. She will be receiving 9 hours a week, MWF from 2-5, where someone works one on one with her during that time, teaching her life skills, social skills, coping skills, and whatever else she needs. Through this program, I also receive parent training on how to cope with the tantrums and behaviors that are never seen by the therapist because Julianna is so good at hiding them. Just yesterday, a therapist came over to talk with just me about what has been going on in the last few weeks with her, and we were able to come up with great ideas on how to approach these problem behaviors. And her new therapist that works one on one is just wonderful! She is positive, outgoing, and fun, something that Julianna really loves. She always has great toys and games and crafts that she is bringing over to keep Julianna engaged. Again, a huge stress relief for me, because she gets even more 1:1 time.

We are also seeing a psychologist a few times a month, and she is helping us figure out how to approach the problem behaviors as well. She introduced us to the 1,2,3 Magic behavior program, which is so simple to implement, and just started using officially on Wednesday. When my older kids talk back, or fight, or hit, or whine, etc, I say, "That's 1." If they persist, "That's 2." And if it still doesn't stop, "That's 3, time out" (1 minute for each year of life.) We have been doing the 1,2,3 for her tantrums and hand biting, and so far, it is working. But I know it will not be easy. The biggest part of this program is to not show emotion when you are disciplining, and that is really hard for me. Because of the struggles I have with the kids, I often feel angry and bitter, something I need to work on as well. Those emotions are always at the surface, waiting to boil over to the family. When I am faced with tantrum after tantrum (and if you don't have a child with autism, you don't know how bad tantrums can be) my patience is pretty much gone most of the time. But showing anger doesn't solve anything. So I am trying to be strong and in control right now!

We are also making a chart for her to reward her when she asks for help instead of biting and tantruming. Whenever she can't do something, she will automatically resort to a tantrum. So not only are we doing the 1,2,3, we are encouraging her to use her words and tell us what she needs first, and she will be rewarded with stickers on a chart. This will not be easy for her, but I have gone long enough with these behaviors in our home. So I am going to stick to this plan try my best to help her stop these behaviors once and for all!

She is also still doing the GFCF diet and doing so well on it. At her age, she totally understands what she can and can't have, and has never really complained either. Last night, we went with our respite worker to McDonald's for a treat after Julianna's horseback riding lessons (which she is getting really good at, by the way,) and even though everyone else got ice cream, she was content with her french fries, and when we got home, I made her some chocolate almond milk. We have made the diet work just fine even though the rest of us are not on it. Our goal is to get to her 11th birthday in December, which will be 6 months. If we think she has improved enough to continue the diet indefinitely, we will do that.

What I have learned since being her mom is that each new phase presents challenges. Once I get through something difficult, another problem presents itself. It is typical of any child, actually, and in many ways, it is a blessing, because it is helping me learn new skills and tools that I can share with other moms who might be struggling. I treat Julianna just like our other kids and include her in everything we do as a family. She is going to learn what she will learn in school, and in the home, and we will take her as far as we possibly can. I don't know what the future holds, but I keep holding on to the hope that she will be able to have the same opportunities as anyone else. And if not, that's okay too. We will be there for her, no matter what.

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