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!!!!