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 1^st 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 30^th. 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!

MOPS Devotional - My story of learning patience and raising a child with autism

So, I was given the opportunity to speak at my MOPS these past two weeks. I had thought of posting my devotional to the blog for people to read but then I thought it would mean more if I actually read it. Probably could have touched up the make-up and worn a more flattering shirt but you know it's late, I'm pregnant and... whatever :)
Obviously, this is from my point of you and while it may seem at certain points when I am talking like I  have low hopes for Leila's future this is just NOT true. Chris and I have every hope and belief that Leila will grow to be an independent, beautiful, smart, confident young woman. Her speech and eye contact continue to improve and she has recently shown great interest in copying and wanting to be with/follow Lucy. Lucy does not know what to make of this exactly and it's been a struggle to explain to Lucy that this is what little sisters do... bug their big sisters. Lucy's response was "Oh, I didn't know that" well she is getting a crash course in it now!! I suggested she call and talk to my older sister Alisha and ask her what it is like and she said that was okay she didn't need to call :)
We are 21 weeks pregnant now with a third girl and everything else is going well. We are looking forward to suprising the girls with a trip to Disney Land next week and enjoying the parks through their eyes.

North Star Foundation Puppy for Leila

Dear Family and Friends,

We write to ask for your support in a very important mission – to sponsor the placement of a service dog in the Patrick Family. Our daughter, Leila (4 years old), has autism and was just recently cleared for the placement of one of the service dogs bred and trained by the North Star Foundation. Her assigned puppy will be born later this spring; however, in order for the placement to occur, it is crucial that we raise the funds necessary ($5,000) in the coming weeks. The high cost of placement is due to the nature of the intensive and specific training each North Star dog receives, along with the considerable follow up services they provide.

North Star Foundation is a nonprofit organization dedicated to helping children with special needs through the use of well-bred and trained assistance dogs.  They have been incorporated for ten years and have made over 100 North Star placements in homes of children who face social, emotional and educational challenges around the country. Over half of the children they serve are on the autism spectrum. Their nonprofit work with children on the autism spectrum was profiled in Autism Spectrum Quarterly’s spring edition (www.asquarterly.com).  You can also learn more about North Star by visiting their website at www.NorthStarDogs.com and/or viewing a video at http://www.youtube.com/profile?user=northstarvids.

Please consider making a donation to support the placement of Leila’s service dog. Your donation to the North Star Foundation can be applied directly to her placement and must be received by May 31st . All donations to North Star are tax deductible (EIN # 06-1589586). Your check or money order should be made out to North Star Foundation and you should put Leila’s name in the memo line on the check so that they will apply your kind donation to support Leila’s placement. You can also make a PayPal donation via the donation link on their website at www.NorthStarDogs.com; there will be a screen to indicate your donation is meant to support Leila, but if you can’t find it simply send a separate email to Patty Dobbs Gross at northstarfoundation@charter.net to inform her of your donation. Please also let us know of your donation so that we can properly thank you for your support.

We are extremely excited about the immeasurable benefits Leila will receive with the placement of a North Star assistance dog in our family and we really appreciate your support to make this happen. We’ll certainly keep you informed of Leila and her puppy’s progress in the coming months! Please feel free to contact us if you have any questions: Chris and Jessica (925) 292-1352. Hope you and yours are doing well and hope to hear from you soon J

Thank you in advance for your support,

Chris, Jessica, Lucy, and Leila                     

Lots of updates...

It’s been awhile since we posted a blog and quite a lot has happened in that time. We are now half way through the school year.  Leila is doing really well and is in ABA therapy Monday through Thursday from 2:30-4:30. I chose not to have therapy on Fridays so that we could have a break. It’s a really long day for Leila so it’s nice to come home on Fridays and not worry about being ready for a therapist to come over. Leila is using her speech more and more (when necessary) and her eye contact has greatly improved. She even uses my name “mommy” from time to time without being prompted. She regularly uses Chris’s name to get him to play with her and occasionally will even say Lucy’s name to get her to play as well.

I called an IEP last month to get Leila more speech at school. So she now has an additional 20 minutes of small group speech therapy to help with her articulation of large words. She was tending to start a word correctly and then not being sure of how to say it made up her own gibberish to finish it. She was also mixing up sounds. I am able to go into her classroom every Friday and observe her in two of her sessions as well as circle time and her first recess. I have seen some things I don’t like and Leila’s teacher is always receptive to my ideas and suggestions. Leila really loves school and runs from the car to school almost everyday. I’ve formed a friendly relationship with her teacher Nikki and really appreciate all she does. Especially since the other LASS class lost their teacher over Christmas and has had subs ever since. I was told they finally hired a teacher and that she has 11 years of experience with special needs but no experience with discreet trail – which is ABA. Why would they put someone with no ABA experience in charge of a Language and Social Skills class?? I don’t know, but I’m glad it’s not Leila’s teacher. If it was I’d be calling an IEP and demanding she be moved to Nikki’s class.

Leila’s ABA had a rough, rough start (as expected) but she has settled into it and likes her 3 therapists for the most part. She is closing a lot of programs and they have established instructional control so we are getting ready to venture out into the public for programs on learning to walk with me in a store, stop when being told, etc. next Tuesday. We are also trying to set up supervised play dates (with therapists) with another boy from the other LASS class who’s Mom I’ve become with friends with on a Saturday hopefully. So that’s really exciting.

I also did some asking around and found out that the girl’s dentist has put children under anesthesia for teeth cleaning and x-rays. Leila had her teeth cleaned almost 6 months ago and it was just awful. She was so scared that she was screaming and choking. They tried their best to clean her teeth but just did not do a good job because of how upset she was. After being told twice by one dentist at the practice to just bring Leila in and have her watch other children get their teeth cleaned (Are you kidding me?!?) I approached the main dentist and told him “I know you’ve put children under so you cannot say no to me when I ask you to do this for me.” He said that normally because Leila is young he would say no but since we have a familial history of really bad cavities (Lucy had 6 at 4 years old and I’ve had cavities all my life) he would do it for me. Unfortunately, we have Kaiser so we cannot use the surgery center located next to the dentist office so we are paying out of pocket for the anesthesia, which is quite expensive. We feel it’s totally worth it though not to put Leila through any more pain and trauma from another teeth cleaning.

Last thing for Leila is that we were recently cleared to start fundraising to get Leila and our family a trained dog. I thought we could just get an older dog but that is just not possible with Leila. She often makes dogs nervous and because she is often unpredictable we need to have a very calm dog that has grown up in our household. I found North Star Foundation on the internet almost a year ago but it just wasn’t the right time for us to commit to a dog. We’re now ready for a dog, especially the girls, and feel the dog will really help Leila to be calm and ease her stimming. I chose North Star because of their philosophy of involving the entire family in the training and transition of bringing the puppy into our house. They also are on the cheaper side and allow children as young as 3 to have a dog. Most foundations require the child to be 5 years of age. So when I say cheaper I don’t mean like $200.00… I mean like $5,000.00. Yep, $5,000.00. That’s a lot of money. However, because of the extensive training and the follow up services (and even flying the puppy from Connecticut to California) our puppy will be worth a lot of money. So we are starting to fundraise and will be sending out a letter to friends and family and posting it on Facebook in the hopes of getting some financial help!

So our most exciting news for this post is that I’m 14 weeks pregnant. This is something that Chris and I have been thinking about since Leila was probably 1 year old. However, Leila was a wild and crazy 1 year old – I mean she started walking at 9 months old (well one week before she turned 10 months). Then when we started noticing problems at 2 years old so we postponed, then she was diagnosed at 2 1/2 so we postponed. Then over the last year and half we kept pushing the idea back waiting to see more and more improvement in Leila. Chris kinda got sick of me talking about it all the time so we made a deal to not talk about it till my 30^th birthday. So on my 30^th birthday I brought up the subject again and we decided that we were ready. There were a few things I wanted to do before getting pregnant and one of those was running in the Nike Women’s Half Marathon in October. So I beat my previous flat course half marathon time by 3 minutes (Nike is notoriously hilly) and that was a pretty good feeling. We found out we were pregnant a couple days before Thanksgiving. We are very excited! We’ve put a lot of thought into this decision and have thought out all the possibilities and what this implies for our family. We are well aware that we will now be outnumbered and that it will be difficult at first but we are up for the challenge. Basically, I could give you a thousand reasons why we should not be pregnant but all I can say is that I wanted one more baby, that I didn’t feel done, and that my heart has room for one more beautiful child. Of course I am scared but I truly believe everything will be okay.

We enrolled in Kaiser and UC Davis’s EARLI Study. This study will follow me through my pregnancy with interviews, blood work, urine tests, a dust test of our house and lots of questionnaires. Like about what I’m eating, my physical activity, my mental health, etc.  They’ll also take Chris and Leila’s blood. Then when the baby is born they will take samples of the cord blood, meconium, and even my breast milk. They will also provide assessments for the baby at 6, 12, 24 and 36 months of age to make sure he/she is hitting all milestones and helps us to notice red flags for autism. Lucy is incredibly excited and hopes to have a brother since “she already has a sister”. Obviously Leila does not understand what is going on but I’m hoping as I get bigger she gets more curious.

That is all for now… I’ll do my best to keep the blog more updated but now that I’m done for the day at 9:30 a lot doesn’t get done J.