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.

Watch the video and an update on Leila

The video above has a very powerful message so if you haven’t watched it already; I encourage you to watch it, right now. If you want to know what it’s like, if you want to know what a parent of an autistic child goes through and deals with he pretty much nails it.

Leila started school this week and her transition into a new classroom, with a new teacher, has gone really well. She had a rough time Tuesday when we dropped her off but her teacher said she was fine after about 10 minutes. She has two returning aides and two new aides. I really like her teacher, Ms. Nikki, so far. She is very protective of Leila and has said she “just loves her”. Who wouldn’t? J I’ve already seen small improvements in Leila’s eye contact and use of speech. But also seen the return of two old stims… taking a kitchen utensil (or anything she likes at that moment) and waving it in front of her face and taking sharp intakes of breath. So I plan to ask her teacher and our new ABA supervisor what I should do to discourage these old “new” behaviors.

This brings me to ABA therapy. Two weeks ago we completed all our assessments and met our new supervisor, Patrick. I like him a lot too. I let him know that I would not stand or hesitate to call him for therapists that do not call to tell me they are late or not coming. I also said I would not hesitate to call him if I thought a therapist didn’t “fit” right with Leila; that I would give them two weeks and if I still didn’t think they were right for Leila I would request they not come back to our home. He agreed with everything, told me to call him for whatever and whenever. I think we’ll get along just fine. J I finished all the paperwork (23 pages of paperwork, ugh!) and now we are in the waiting phase. Waiting for Patrick to write his final report and waiting for the Regional Center’s approval. Leila will most likely start therapy again in the middle of September/early October. Her day will be as follows: 8:30-1:30 school, maybe a 1 hour break, then ABA therapy from 2:30-4:30. That’s a long day for a 3 year old, but ABA works so we are doing it. I won’t be putting Leila in any other activities like speech or occupational therapy because she gets OT twice a week at school and I’ve been told by Leila’s previous speech teacher and Patrick (ABA supervisor) that speech therapy won’t exactly help Leila. Meaning, when Leila echoes or initiates speech her words are very clear. She does not need help annunciating or forming words. She needs help unlocking them from her brain. A speech therapist can’t really help with this.

I’ve been forcing Leila to use my name when asking for things lately in the hopes one day she’ll actually use it on her own. The day that happens I will update the blog with a simple “she finally said it”. I will be very happy the day that happens!!



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 2^nd 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 23^rd. 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.

Leila's first IEP

We had Leila's first IEP this past Friday. I was pretty scared walking into it. I had convinced myself that I was walking into a room of people who didn't have Leila's best interest at heart and that I would have to fight for the services she deserved. I was so stressed out the night before that Chris literally had to take the piece of bread out of my hand to stop me from stress eating!!

 

So we walked into a room with 8 people in total, Chris and I, the school psychologist, the adaptive PE teacher, the speech teacher, the ABA teacher, our Regional Center Case Manager, and our ABA supervisor. They started the meeting with the adaptive PE teacher reading us her assessment and her recommendations. Leila was assessed to be between the age of 2 to 2.6 for her gross motor skills like balance, walk-backwards, run and jump. She was recommended to have two pull-out sessions a week for 25 minutes of adaptive PE. Next, we heard from our ABA supervisor on Leila's progress over the last 6 months. Leila has met all but a few of her goals. She made great progress and we can definitely see a difference in her. My best friend Danielle said today that she notices a big change in Leila's speech ability, that she was talking a lot more! We then heard from the school psychologist and she basically spent a lot of time telling us what Leila can't do compared to what a typical child her age can do (a 3 year old). We heard a lot of Leila can't do this and Leila can't do that.  Here is what Leila test results were:

 

Cognitive Skills (Based on the Bayley Scales of Infant and Toddler Development):

 

Cognitive - 26 months

Fine-Motor - 29 months

 

Adaptive and Social-Emotional Skills (Based on the Vineland-II Adaptive Behavior Scales)

 

Communication

Receptive 1-11

Expressive 1-4

 

Daily Living Skills

Personal 1-7

Domestic 2-2

Community 2-2

 

Socialization

Interpersonal Relationships 0-7

Play and Leisure Time 1-1

Coping Skills 1-11

 

Autism Rating (Gilliam Autism Rating Scale)

 

Stereotyped Behaviors - Very Likely

Communication - Very Likely

Social Interaction - Very Likely

Autism Index - 50th percentile, Very Likely

 

So after confirming that Leila was autistic (duh, I know) she briefly went over Leila's strengths. Leila has great fine motor skills like using a pincer grasp to color on paper, stack blocks and string beads. She also has strong daily living skills like feeding herself, drinking from an open cup and helping to put things away.

 

Then the speech therapist reviewed Leila's report and her recommendations for goals this year. Leila was assessed according to the preschool language scale:

 

Auditory Comprehension - 1 year 9 months

Expressive Comprehension - 1 year 10 months

Total Language Score - 1 year 8 months

 

Leila has 13 Goals for the next year to work towards. Just to give you an example, two would be: 1) Leila will demonstrate understanding of concepts big and little as demonstrated by her ability to point to the correct object/picture when named. 2) Leila will follow two-step related requests/directions involving herself, objects, and actions during a classroom activity, and she will turn and attend when her name is called in the classroom, without an adult verbal or physical prompt. Sounds simple enough right? Not really!!!

 

The whole IEP took about 2 1/2 hours. Chris and I walked out feeling confident with the goals set for Leila and that her needs would be met. I have a feeling she will have a hard time adjusting to her morning speech class so Leila's first week of school I will be bringing Leila in for only a half hour to 45 minutes at a time to ease her into her new schedule. She will attend her afternoon ABA classroom like normal though. I feel she'll do great there as it is so similar to what she is doing at home now. Well, I think she'll transition well there.

 

I've said this to a couple people, and I feel like a bad mom saying this, but I am grateful I will not be there for this new transition period. I think every mother HATES to hear their babies cry, no matter how old they are. Having to be home these past 6 months and listen to Leila cry almost on a daily basis through her sessions has been really hard. Really HARD. It's very stressful and rips me apart. So I am grateful that I won't be in the next room over having to listen to Leila struggle. I'm grateful that there will be trained professionals helping her to work through her frustrations and help her to express what she wants and needs. But I'm sad I won't be there to help her, and I'm sad I won't be there to comfort her when she is upset. I'm SAD to let go of my baby. I've been with Leila since she was born, I've been a stay at home mom with her the whole time. It's hard to give that control to someone else. She will be fine, I know she will be. It's just really hard to let go.

Frustration

The past couple months have had a few bumps in the road. PCFA (our ABA services company) has struggled since December to fill Leila's therapy hours. Two weeks ago between unfilled hours and therapists calling in sick Leila received only 7 hours. At that point I got very mad and started making phone calls. I've said before that Leila's therapists are very young and it's starting to show in their work ethic. The tiniest bit sick and they call saying they can't make it. VERY frustrating. So I called our case manager at the Regional Center and asked what my options were as far as switching providers. She was able to get me in touch with another company that agreed to take on Leila with her existing assessments. After I made Natalie (our supervising ABA therapist), and Sonja (our lead therapist), aware of this they told me the reason Leila's hours hadn't been filled was because I was requesting experienced therapists. So I told them to just fill the hours!!! So viola! Her hours were filled. I really like her new Monday/Wednesday morning therapist very much. Leila's afternoon therapist I'm not so fond of. Leila has had her for a week and still continues to struggle and tantrum with her. I emailed Natalie this morning to let her know my concerns. She sent me a rather cold, generalized email back. I am counting down the days till I don't have to deal with PCFA. None of these therapists have children. None of them know what it's like to listen to your child scream and become so upset that they choke themselves (yes, I stopped the session this time). Not one of them understands how painful it is to hear your child struggle. I will NOT be using them again for Leila's social skills hours.

Leila had her school district assessment this past Friday at Croce Elementary here in Livermore. They have an entire special education program, kind of like a school within a school. Leila was assessed by 4 different people, a therapist, adaptive P.E. specialist, speech therapist, and nurse. She was assessed in 6 different areas, academic/pre-academic achievement, social/adaptive behavior, psycho-motor development, communication development, intellectual development, and medical health history. Part of the assessment was the exact same test Leila did in October for the Regional Center's official diagnosis. I actually saw a huge improvement in some of the areas they tested her on so that was awesome to see. The therapist told me she would call me back by Friday with their recommendations but she called today! They are recommending Leila have a full program. Which means on Mondays she would go 11:45-2:15 and Tuesday thru Friday she will go 8:30-2:15. Her day will go like this:

8:30-11:00 Speech program. A class with 6 other children 1 teacher and 2 aides.
11:00-11:45 - Lunch/recess
11:45-2:15 - ABA based program. A class of up to 10 kids with 1 teacher and 6 aides.

So... I knew this was a possibility but I just didn't think they'd do the all day program. Now that they are, I'm sad and a little overwhelmed. There will be no transition period, she turns 3 on a Saturday and starts school that Monday. I've gotten so used to being with her at home it is going to be extremely hard to let go so suddenly. I don't even know how to prepare for this. I mean, Lucy only goes to school 3 days a week for 3 hours!! I know to be thankful for these opportunities for Leila and receiving these awesome services and I know the progress we will see but I'm just so damn protective of Leila and I won't even be allowed to co-op in her classroom. I've kept Leila in my bubble for a long time now and to not be able to be with her watching her every move will be difficult. She shows the most affection to me, and I think I understand her efforts at communication best. However, she can barely communicate with me, how will she make it in a classroom all day?? Anyway, I have a lot of mixed feelings right now. On the 25th I have the opportunity to go observe the classes that Leila will be in so I think this will help ease my worries, or at least I hope.

Otherwise, Leila is doing great. Her little personality is finally starting to emerge and I'm finding that she has a very eager to please disposition. For example, she is very hard on herself when she doesn't get something right the first time. She loves, loves to read and sing songs! We recently put up a play structure in the backyard with swings and she could spend hours out there just swinging. She loves it! AND we have more progress in the potty department. Now, instead of practing sitting in on the little potty she prefers to practice sitting on the regular toilet with ring! That's a step in the right direction!!!!