Thursday, May 3, 2012

Saying Goodbye and other updates...

Saying Goodbye

This has taken me awhile to write. My dang pregnancy hormones are making it extra hard to get through…

 Two weeks ago I got the bad news that our ABA supervisor Natalie was leaving PCFA. Natalie found a job closer to home with less hours and more money so she could not pass up the opportunity. I was devastated when I got her email. Natalie had been with us since Leila was 2 1/2. She saw our house when Chris and I were sleeping on an air mattress in the front room during our addition/remodel. She helped me to get through all the initial feelings of guilt and sadness that came when Leila was first diagnosed. Natalie and I had some times where we butted heads but ultimately she was a great support to me when I needed someone who would understand the frustrations of raising a child with autism. She listened to me when I would doubt myself over everything from how many hours of therapy Leila should have, to what I should feed Leila, to what I should do when Lucy was acting out. I miss her. Natalie leaving really doesn’t have that much of an effect on Leila. Leila’s therapists will stay the same and that is really all that matters. Natalie never ran a daily session with Leila she just oversaw her program and visited with me once a week while she updated Leila’s binder. I really looked forward to her visits and often times when Leila was in early intervention, and I was stuck in the house for over half the day, she was one of the few adult conversations I had. I gave up a lot when Leila went into early intervention. We lost the playgroup opportunities and play dates with friends that stay at home mom’s depend on for social interaction. It was a tuff transition and Natalie helped to get me through it. I will miss seeing her weekly and I will miss our chats. She did give me her personal information though and I hope we stay in contact.

Last week I received an even more devastating blow. Leila’s teacher, Nikki, informed me that she is moving back to Texas at the end of the school year. Nikki and I have recently formed a friendship outside of school. I was so excited to finally be making a friend of my own that I hadn’t met through someone else. It was nice to have a friend that truly understood what having a child like Leila means but then also have other things in common too. It’s been hard for me to make new friends since Leila’s diagnosis. I find it hard to trust people and feel comfortable enough with to bring Leila to someone’s house. I didn’t have to worry about this with Nikki. Nikki’s husband is moving back to Texas for his job but she has agreed to stay till the end of the school year. I know this is quite a sacrifice to be separated from her husband and take care of her 3 children by herself. So I’m just sad lately, sad to be losing my new friend and sad for Leila to lose this great person in her life as well. Because Leila has also formed an attachment to Nikki too... she loves Nikki very much, gives her hugs all the time, calls her by her name (probably more then she says mine), and has some separation anxiety from her. You could say Nikki is like a second Mom to her since she spends the most time with her besides me. I feel bad that Leila will lose this relationship and hope and pray that her next teacher is just as awesome. I know everything happens for a reason and I’m very thankful to have had Nikki in our lives for this brief period of time. I will really miss her.

Otherwise Leila is doing great. Her in home ABA therapy is finally going really well, her new supervisor works really, really well with her. In fact, she is probably a better fit for were we are at now in Leila’s therapy. Leila is interacting more and more with Lucy and their new thing is fighting over sharing the ipad… like a normal sibling interaction! It’s annoying to have to break up but nice to see them actually acting like typical sisters. We have about one more month of school left before summer vacation and I don’t plan to enroll Leila in summer school this year. Even though the other LASS class teacher is teaching this summer I cannot trust the aides they hire to work with her. They are not the normal aides… basically hired babysitters for the summer. I cannot risk having Leila regress again like she did last year. So Leila will just have ABA therapy over the summer before she goes back to school again in August.

Which brings me to a new battle in keeping Leila’s therapy coverage on track. Recently, California passed a law requiring that health insurance fund ABA therapy. As of July 1st your insurance must work with you to fund therapy or it’s basically against the law. I think this is great, no, I think it’s awesome! I think a lot of people will really benefit from this. However, this has become a HUGE pain in my butt. Our ABA coverage, which for 6 months costs upward of $30,000 is currently funded by the Regional Center of the East Bay. Well… now the Regional Center is telling me that Leila will only be covered until June 30th. After that they are not legally responsible to fund Leila’s therapy – this will be our health insurance’s (Kaiser’s) responsibility. What this means is that there will more than likely be a large gap this summer in Leila’s therapy. Currently, our ABA provider, PCFA, is not a vendor of Kaiser. So, unless they beat feet to become one (and I don’t how that works) we will have to start all over with another ABA company doing all new assessments. Since I am not enrolling Leila in summer school she potentially will have a 2 month break in any kind of therapy… which is not good. Leila thrives off of a solid routine and ABA therapy. So we must either float her ABA therapy through July (which would be quite expensive) while hopefully Kaiser approves our funding and we start our new assessments or I must fight with the Regional Center to keep her ABA covered through July. I am okay with Leila having the month of August off. She will be okay with a basically 3 week break before school starts again. Either way I am not really appreciating this new law right now it’s only causing me stress.

 We are still trying to fundraise for our North Star Dog… read our previous blogs to learn more about it. Thanks and I will try to update the blog again soon!