Welcome to our blog about Leila! I have attached the first two e-mails I sent out when Leila was originally diagnosed:
Hi friends and family,
Most of you are aware of the process we have been going through to get Leila into speech therapy. We finally have made great progress with the Regional Center. On Tuesday we had a speech therapist come to the house to assess Leila. This was our 3rd speech evaluation and the most informative. The speech therapist assessed Leila to be at a 12-13 month communicative level, a significant delay. In order to receive services from the Regional Center her delay had to be 33% in two areas or 50% in one, obviously Leila was 50% delayed so once we fax our insurance's denial letter of therapy coverage we can start Leila in speech therapy. Today we saw two developmental psychologists. After about 2 1/2 hours of different testing and a parent interview the two psychologists gave us their opinions. Not a diagnosis, but what their suspicions are. They both agreed that Leila's development has taken an "atypical" path and agreed that she is mildy autistic. They used the term PDD http://www.autism-society.org/
site/PageServer?pagename= about_whatis_PDD . Leila will have to have further testing to determine where on the scale she lies and to get a "specific" diagnosis. The autism evaluation will take place in the next week or so and in between we have been asked to take Leila in for a check-up and for genetic testing. They would like to see if there is a cause for the autisim and the genetic testing may be able to pin point that for us. We would like for it to not be genetic so we are keeping our fingers crossed. That appointment is on Monday. As for now, she does qualify for free speech services and developmental services.
The Regional Center has been awesome. We have been assigned a case manager and she is very helpful. Should Leila be officially diagnosed through the Regional Center programs and family support will be open to us at no charge. She will have many opportunities for growth and development with the Regional Center's help in these next few months.
Obviously, I am upset. I cannot help but feel like a failure to my child. It is in my nature to be easily guilted so you could imagine the guilt I have right now. I keep running through my head things I could have done wrong during the pregnancy and during her first year, I just cannot help it. My sister said it was okay to cry and that I am allowed to have a type of "mourning" period for Leila. Bottom line, and this sounds childish, I don't think it's fair- not at all. I'm sending out an email because I've already cried a lot this week and I don't want to be on the phone all afternoon crying some more. Sorry... :)
We will be sure to update everyone on Leila's progress and once we get our official diagnosis.
Thanks everyone for your support.
The second email I sent out:
Hi family and friends,
A lot has happened since my last email about Leila. We have had Leila assessed for ABA (Applied Behavior Analysis) therapy (http://www.
pacificchildandfamily.com/ index.php/programs/autism-and- related-disorders/) and she starts next week. Her schedule will be Monday through Friday 9:30 to 11:30 then a one hour break and continue from 12:30 to 2:30. This will all be done at our house with a morning and afternoon therapist. Leila has also started her speech lessons, two half hour sessions each week at the School of Imagination's Happy Talker Program (http://www.happytalkers.com/ index.html) on Mondays at 3:30 and Thursdays at 3 over in Dublin. We had originally had a speech therapist come to our house but it was not a good fit. The Regional Center sent us a woman that had no experience working with autistic children. After our first speech session I requested a transfer to the Happy Talkers Program and we have been very happy with them. This Thursday Leila has her "official" autism assessment. This will be her longest assessment - it will last 3 1/2 hours not including breaks. I have been told that it is quite intense and that the parent interview is extensive. At this assessment we will learn were Leila is on the autism spectrum and receive a diagnosis. Meaning, an actual paper report detailing the severity of her autism. I have been dragging my feet, for various reasons, to get Leila's genetic testing done so I don't have any results for that.
We are doing better emotionally. I would say that Chris is happy that we have a plan of action for Leila and that helps him. I still struggle, especially when we hang out with other two year olds. Then the differences between Leila and other children becomes more apparent and it becomes especially hard for me. I am fully aware that it does Leila and I no good to compare her, but I do. I am happy to have a plan for Leila and anxious to start her ABA therapy. Leila babbles all the time and has many words so I am ready to be able to understand her and for her to use her labels as forms of communication. On a good note, Leila has taken a renewed interest in Lucy. She copies her a lot and follows her around. Leila still needs her alone time but she is engaging with Lucy more and more. One night in Lowe's we saw Leila run up and give her sister a hug. A huge and very special step for her.
I will send out another email after Leila's appointment this Thursday with more details of her diagnosis. I am nervous for the appointment and hope it goes well.
Since this last email Leila has started ABA therapy and has adjusted well to her busy schedule. She has four total therapists. Two morning and two afternoon. I like them all :) Leila was officially diagnosed with Autism Spectrum Disorder about 2 1/2 weeks ago. Unfortunately, there is no scale for where a child lies on the spectrum. So we cannot say officially that Leila is mildly autistic... etc.
The ABA was hard for me at first. I struggled with Leila crying a lot throughout her sessions, she would leave the room to look for me and I would have to usher her back to the playroom to continue with her therapy. I did not want to compromise what the therapists were trying to teach her but at the same time was falling apart at not being able to comfort my child. I've since become more aware that when Leila is upset she is not hurt, they are not hurting her, she just cannot communicate that she doesn't want to do something. I still hurt when I hear her crying though. What the therapists are teaching Leila are ways to communicate her wants and needs. They use a system called PECS http://www.polyxo.com/visualsupport/pecs.html to help Leila communicate. They are also helping Leila to respond to her name, give eye contact, sit cross legged, match animals... etc. Anyway, it is late and I could go on and on. That's why we started this blog after all!