Friday, December 24, 2010

Great news!!


 Tuesday we had our case manager over for a review of Leila’s case and she gave us the great news that Leila has made status 2!! What this basically means is that Leila will receive services till the age of 6. She will have to be assessed again when she turns 3 and we will find out what exactly she qualifies for. Mostly we are hoping for continued ABA services. She could possibly get 10 hours a week of ABA and they would focus more on social skills rather than learning skills. Status 2 also means we qualify for respite services. We could go through a respite agency but they would only watch Leila and not Lucy. So, if we find someone personally (not a family member and they have to be over 18) we then become a vendor with the Regional Center and they reimburse us up to $10 an hour. So the hunt for a babysitter begins!!

We also recently let go of one of our therapists. I truly did not feel she was a good fit for Leila. She seemed to have lost control of the sessions and was not providing anything instructive for Leila. I also did not like the way she reinforced Leila, I feel she did too much physical reinforcement (tickles) than vocal. She did not have a good balance. So as of right now Leila only has TWTH sessions from 9:30-11:30 and 12:30-2:30. We are taking a break from all services next week so I’m hoping when we come back our ABA supervisor will have filled one of the spots on Monday and Friday. I do feel badly for this therapist but my number one priority is Leila. I want consistency and as little stress as possible for her. My gut tells me not to have the therapist back so I’m going to go with my mommy instincts.

On an awesome note Leila is really making progress in her vocals. She is just really trying to communicate more with us and echos almost everything we say. She even echoed “I love you” last night. Sometimes she does not use words but will physically move me toward what she wants and even points. When she really wants our attention she will make direct eye contact with us and try to tell us; it’s pretty awesome. Even during Leila’s sessions the therapists have all but gotten rid of her PECS binder and now only use Leila’s ability to vocally ask for something to receive what she wants. They are also working on teaching Leila to take turns or to ask for a turn. This is the source of a lot of her tantrums lately but she is doing much better. Chris and I both agree that Leila has made huge strides in the last 2 months. Such little time has gone by but it has made such a huge difference.

I’m reading a book right now called “10 Things every child with autism wants you to know” and it’s almost snapping me out of my whoas me attitude. She says:

“If you are treading quicksand in the swamp of what-might-have-been, you can be pretty sure that’s the message your child is getting. You’re a rare person if being constantly reminded of your shortcomings spurs you to improve. For the rest of us, it’s not a self-esteem-building experience. Time to grab for that overhead vine and realize that there is only a pencil stroke’s difference between “bitter” and “better”.”

I have to focus more on Leila’s potential and possibilities then what could have been. It’s a waist of time basically. I told a friend recently that God made Leila this special way and gave her to us because he thought Chris and I would be the best parents for her. This little thought keeps me going when I get down on myself.

Well, have a Merry Christmas everyone!! Leila has shown some interest in opening presents this year so I am excited to see her reaction on Christmas Day. I’m sure we’ll have lots of pictures and video to share!

Thursday, December 9, 2010

T-shirts, dogs, and more communication

Well, we made it through Thanksgiving and have knocked out almost all our Christmas traditions (train of lights, Deacon Dave’s house) with little incident. Leila has definitely gotten used to being at home most of the time and is most comfortable here. Well, I have gotten used to it to. The more time we spend here the more stressed I become when going to other houses. Here at our house Leila is free to move around and explore without hurting herself or other things. I worry what other people think about Leila. She’s taken to screaming randomly as a self stimulant so that can take people by surprise. I’ve found these little autism awareness cards you can hand out if people stare or make rude comments. Basically saying, my child has autism, your comments/staring are rude, these are the characteristics of autism, educate yourself. Our supervising ABA therapist, Natalie, also suggested that if I am worried some of her clients put their children in an autism awareness shirt and she says this changes how people look at you and your child. So I’ve looked at some shirts and plan to buy soon!

Recently, Leila has taken off on me and other people have had to tell me where she is. We where in Kohl’s and she took off out the double doors. Lucy thankfully ran over yelling, “Emergency, emergency Mommy!! Leila ran out the doors!” I ran outside in the middle of checking out and an older woman was walking Leila back in. Thank goodness Leila followed this woman freely back to the store, I could just see the woman trying to bring her back in and Leila tantruming in the middle of the parking lot. Another time we were picking out our Christmas tree, I thought both Lucy and Leila were following behind me to the car. I turned around and Leila was gone. She had run across the Home Depot parking lot to look at flowers. Thankfully, a man and woman that had been in the tree lot saw me turning frantic and pointed to where Leila was standing. SO… Lucy desperately wants a dog. I think Leila would really benefit from a dog. I thought okay, I will get an older dog, already potty trained, great with kids. Well, I did some more research and found out that no matter if a dog is great with kids if they are not used to the type of tantruming Leila does they could either react aggressively or run away scared. Not really what I want to add to the situation. So I looked around some more and found a ton of sites that train dogs especially for autistic children. Dogs that can track your child if they disappear or are trained to alert you if they start to stray! They are trained to be around screams and crying and not stress about it. These dogs can help autistic children stay calm, create confidence and affection!! So I’m going to start looking seriously into it… if our school district allows it, if Lucy can be equally involved in the care of the dog, do I go with a site were we have to raise money or do we get on a waiting list? Stuff like that.

Otherwise, Leila continues to improve in her communication. She labels things independently now. Meaning, I don’t have to ask her and she’s not repeating something I said. For example, she will watch a movie like Wizard of Oz and point out and say, flowers, water, bubble, and puppy. She constantly is asking to be picked up by saying “want up”. She also uses “look” and “need help” a lot to communicate with us. She can also tell me “drink” when she is thirsty. These have really helped with tantrums. Well, we still have tantrum issues, like tonight trying to put Leila in her pajamas she completely melted down and then promptly passed out when laid down in bed. That girl LOVES to be naked! Haha! I can laugh about it now but when she’s screaming bloody murder and throwing her head back or kicking me it’s not so funny. We are also running into sharing and taking turn problems lately but I think most 2 year olds have this problem! Lucy is very helpful. She’s like a little ABA therapist, constantly forcing Leila to engage and even trying to run some therapy programs with Leila. It’s pretty funny! Lucy tries to play with Leila more and that’s fun to see, they like to both hide in the cabinets under the fish tank. Lucy will knock on the wall and Leila will say “hello!”… it’s really cute.

We have a couple parties this Saturday, pretty much back to back. I am hoping that Leila does well and that I do not stress out. Both parties will have a lot of people there!! Wish us luck!