Thursday, July 28, 2011

Leila's One Year Anniversary

One year ago today we received Leila’s preliminary diagnosis of Autism Spectrum Disorder. One year ago today I was just devastated.  In some ways I still am. I still look at my beautiful, curly haired Leila and think, “why her?” and I still just can’t help but think what I could have done differently or where I could have been wrong. It’s hard, really hard. I have told some of my friends that I do best when I live my life day by day. So 90% of the time I focus on the here and now and do not think about Leila’s future. However, 10% of the time I am either forced or I let myself fall into thinking about her future and the struggles she will face as a teenager and adult. These 10% days are bad days for me, I get very depressed, cry, overeat – it’s not good. But, it doesn’t happen that often so I let myself have these days without too much guilt, and I think that’s okay.
 I think it’s safe to say it has taken me a year to make it through the 5 stages of grief and I’m pretty sure I’ve made it through relatively well. Gained a couple pounds, lost a couple pounds, got a lot more gray hair, got highlights to hide the new gray hair, but we made it to a year and the difference between Leila a year ago and Leila now is astounding. She went from no speech and tantruming every 5 minutes to being able to say so many words (most echoed still) and having a better hold, and maybe even a better understanding of her tantrum behaviors. I was pretty beat down when we started ABA a year ago. I really didn’t think it would work and starting it was horrible. Having to listen to Leila scream and cry in the other room and not barge in was hard. It took me a long time to realize that she wasn’t being hurt she just couldn’t express her frustrations in words. Staying in the house everyday was hard.  We lost a lot of mommy/kid interaction that we would have gotten in a playgroup setting, I couldn’t co-op in Lucy’s class, and I had to drag the kids shopping in the middle of the afternoon, not a good time. But we made it through 6 months of ABA therapy and I don’t regret all that I sacrificed to have Leila in it. ABA made a huge difference in Leila’s life and opened the gateways for Leila’s speech abilities now.
When Leila started school in March it was hard, again. Not many stay at home mommy’s let go of their 3 year olds for 5 ½ hours every day willing. I watched Leila scream and cry for that first week of drop off and every day I cried my way back to the car. I went from being stuck in the house for basically 5 hours a day to just letting go of her and trusting her in a school setting where I was not allowed (at first). But if I thought ABA did wonders for Leila, being in a speech classroom and ABA classroom did even more. Leila blossomed in school. Her speech tripled and she started using 2-3 word sentences. She started listening more, singing more clearly, and following directions better. We were amazed and still are. I credit Leila’s speech teacher, Sue Putnam, for a lot of this. She was just wonderful and a huge support and source of information for me. Unfortunately, they are changing the program this year and Leila will not have Sue again and I’m really sad and disappointed about that.
Lucy has been awesome. She is such a great big sister to Leila. She is like our own mini therapist constantly forcing Leila to engage and play with her. I’ve seen their relationship grown in leaps and bounds over the past month and it brings me such happiness to see them engaging each other and playing and laughing in the house. Sometimes I am sad for Lucy though. To Lucy, Leila is Leila, this is what a sister relationship is for her. But I know the relationship I have with my sister and when I found out that I was having another girl the first thing I thought of was I hoped Lucy and Leila would be as close as Alisha and I are. Perhaps they will and maybe they won’t, I can only hope for the best and try to foster a relationship between the two of them that will last a lifetime.
I think the only feeling and “issue” I have left to still learn to deal with is jealousy. I find myself jealous of a lot of things, maybe they are trivial or silly but I can’t help it. I’m jealous of other 3 year olds. I’m jealous of sibling relationships that my girls don’t have. I’m jealous of Mom’s who get to work in their child’s classroom. I’m jealous of people who can take their 3 year old to a movie. It’s silly, I know. But I’m working on it and slowly learning to accept still. I realize I sound very “poor me”, but this is my blog and this is what I feel on a daily basis. I pray a lot for patience, for understanding, to be a better mommy and wife and I think I am a better Mom then I was a year ago. I’ve done a lot to work on bettering myself this year including taking a 12 week Dialectal Behavior Therapy clinic, or as I fondly referred to it as my “crazy clinic”. After 12 weeks of therapy I am a more calm and rational person with Chris and most of the time with the girls ;), I found a hobby in baking that makes me really happy, and I’m still running and getting ready to train for my 2nd half marathon in October. Life is better than it was a year ago, our family, and my marriage is in a much better place.
After pulling Leila out of a horrible summer school program this past month she has 4 weeks off and then starts school August 23rd. We have also started the process for ABA therapy once again and she will more than likely have 10 hours a week of ABA starting in September as well. I transferred Lucy to the same school as Leila so both girls will be in school Monday-Friday from 8:30-1:30. Yes, I’m very excited to have the time to myself, and I think I deserve it!! Despite regressing in some behaviors (due to the summer school) Leila is doing great, she is really using her words to try and communicate, and we are getting ready to potty train next week. Cross your fingers!! Life is good for us right now, really good. We have much to be thankful for. There is a reason God gave us Leila and I thank him every day for giving me a beautiful, healthy, smart little girl.