Great news!!

 

 

 Tuesday we had our case manager over for a review of Leila’s case and she gave us the great news that Leila has made status 2!! What this basically means is that Leila will receive services till the age of 6. She will have to be assessed again when she turns 3 and we will find out what exactly she qualifies for. Mostly we are hoping for continued ABA services. She could possibly get 10 hours a week of ABA and they would focus more on social skills rather than learning skills. Status 2 also means we qualify for respite services. We could go through a respite agency but they would only watch Leila and not Lucy. So, if we find someone personally (not a family member and they have to be over 18) we then become a vendor with the Regional Center and they reimburse us up to $10 an hour. So the hunt for a babysitter begins!!

We also recently let go of one of our therapists. I truly did not feel she was a good fit for Leila. She seemed to have lost control of the sessions and was not providing anything instructive for Leila. I also did not like the way she reinforced Leila, I feel she did too much physical reinforcement (tickles) than vocal. She did not have a good balance. So as of right now Leila only has TWTH sessions from 9:30-11:30 and 12:30-2:30. We are taking a break from all services next week so I’m hoping when we come back our ABA supervisor will have filled one of the spots on Monday and Friday. I do feel badly for this therapist but my number one priority is Leila. I want consistency and as little stress as possible for her. My gut tells me not to have the therapist back so I’m going to go with my mommy instincts.

On an awesome note Leila is really making progress in her vocals. She is just really trying to communicate more with us and echos almost everything we say. She even echoed “I love you” last night. Sometimes she does not use words but will physically move me toward what she wants and even points. When she really wants our attention she will make direct eye contact with us and try to tell us; it’s pretty awesome. Even during Leila’s sessions the therapists have all but gotten rid of her PECS binder and now only use Leila’s ability to vocally ask for something to receive what she wants. They are also working on teaching Leila to take turns or to ask for a turn. This is the source of a lot of her tantrums lately but she is doing much better. Chris and I both agree that Leila has made huge strides in the last 2 months. Such little time has gone by but it has made such a huge difference.

I’m reading a book right now called “10 Things every child with autism wants you to know” and it’s almost snapping me out of my whoas me attitude. She says:

“If you are treading quicksand in the swamp of what-might-have-been, you can be pretty sure that’s the message your child is getting. You’re a rare person if being constantly reminded of your shortcomings spurs you to improve. For the rest of us, it’s not a self-esteem-building experience. Time to grab for that overhead vine and realize that there is only a pencil stroke’s difference between “bitter” and “better”.”

I have to focus more on Leila’s potential and possibilities then what could have been. It’s a waist of time basically. I told a friend recently that God made Leila this special way and gave her to us because he thought Chris and I would be the best parents for her. This little thought keeps me going when I get down on myself.

Well, have a Merry Christmas everyone!! Leila has shown some interest in opening presents this year so I am excited to see her reaction on Christmas Day. I’m sure we’ll have lots of pictures and video to share!

T-shirts, dogs, and more communication

Well, we made it through Thanksgiving and have knocked out almost all our Christmas traditions (train of lights, Deacon Dave’s house) with little incident. Leila has definitely gotten used to being at home most of the time and is most comfortable here. Well, I have gotten used to it to. The more time we spend here the more stressed I become when going to other houses. Here at our house Leila is free to move around and explore without hurting herself or other things. I worry what other people think about Leila. She’s taken to screaming randomly as a self stimulant so that can take people by surprise. I’ve found these little autism awareness cards you can hand out if people stare or make rude comments. Basically saying, my child has autism, your comments/staring are rude, these are the characteristics of autism, educate yourself. Our supervising ABA therapist, Natalie, also suggested that if I am worried some of her clients put their children in an autism awareness shirt and she says this changes how people look at you and your child. So I’ve looked at some shirts and plan to buy soon!

Recently, Leila has taken off on me and other people have had to tell me where she is. We where in Kohl’s and she took off out the double doors. Lucy thankfully ran over yelling, “Emergency, emergency Mommy!! Leila ran out the doors!” I ran outside in the middle of checking out and an older woman was walking Leila back in. Thank goodness Leila followed this woman freely back to the store, I could just see the woman trying to bring her back in and Leila tantruming in the middle of the parking lot. Another time we were picking out our Christmas tree, I thought both Lucy and Leila were following behind me to the car. I turned around and Leila was gone. She had run across the Home Depot parking lot to look at flowers. Thankfully, a man and woman that had been in the tree lot saw me turning frantic and pointed to where Leila was standing. SO… Lucy desperately wants a dog. I think Leila would really benefit from a dog. I thought okay, I will get an older dog, already potty trained, great with kids. Well, I did some more research and found out that no matter if a dog is great with kids if they are not used to the type of tantruming Leila does they could either react aggressively or run away scared. Not really what I want to add to the situation. So I looked around some more and found a ton of sites that train dogs especially for autistic children. Dogs that can track your child if they disappear or are trained to alert you if they start to stray! They are trained to be around screams and crying and not stress about it. These dogs can help autistic children stay calm, create confidence and affection!! So I’m going to start looking seriously into it… if our school district allows it, if Lucy can be equally involved in the care of the dog, do I go with a site were we have to raise money or do we get on a waiting list? Stuff like that.

Otherwise, Leila continues to improve in her communication. She labels things independently now. Meaning, I don’t have to ask her and she’s not repeating something I said. For example, she will watch a movie like Wizard of Oz and point out and say, flowers, water, bubble, and puppy. She constantly is asking to be picked up by saying “want up”. She also uses “look” and “need help” a lot to communicate with us. She can also tell me “drink” when she is thirsty. These have really helped with tantrums. Well, we still have tantrum issues, like tonight trying to put Leila in her pajamas she completely melted down and then promptly passed out when laid down in bed. That girl LOVES to be naked! Haha! I can laugh about it now but when she’s screaming bloody murder and throwing her head back or kicking me it’s not so funny. We are also running into sharing and taking turn problems lately but I think most 2 year olds have this problem! Lucy is very helpful. She’s like a little ABA therapist, constantly forcing Leila to engage and even trying to run some therapy programs with Leila. It’s pretty funny! Lucy tries to play with Leila more and that’s fun to see, they like to both hide in the cabinets under the fish tank. Lucy will knock on the wall and Leila will say “hello!”… it’s really cute.

We have a couple parties this Saturday, pretty much back to back. I am hoping that Leila does well and that I do not stress out. Both parties will have a lot of people there!! Wish us luck!

Support Groups and Progress

Well Chris and I went to our first support groups over the past week. We went to a family support group through Cornerstone church this past Sunday and met 3 other families with children living on the spectrum. Two of the families have older children both successfully mainstreamed into regular classrooms. Chris and I were very excited and encouraged to see these older kids (age 6 and 10 I think) and it gave us a little more hope for Leila and what she could be capable of. I went to a support group tonight on my own. The Livermore Moms club I belong to has a sub-club for special needs/learning disabled children. It was so NICE to meet with other mom's in the same situation as me. We talked about our kids, shared resources, cried a little, laughed a little. It was awesome. I'm looking forward to the next meeting!!

Leila had a great week. After the stress and trauma from last week I think she is (and I'm probably jinxing this) okay with therapy again. I think she started to associate going into the playroom with what happened last week. Natalie, Leila's ABA supervising therapist, and I discussed getting all 3 therapists on the same page. Natalie will observe all 3 therapists and then have them overlap each other. They say that exposing her to different styles of running programs, different therapists, etc. is good for Leila. Too much of the same thing over and over again can be bad for Leila too I guess.

On another note Leila is repeating so many words!!! She has made huge progress here. When she first started her therapy over a month ago she had maybe 6 words now she has over 25 in any session! She still cannot use most of them to communicate but we are working on it. Leila's speech therapist really emphasized with me narrarating everything I do and she does. Like, "I'm making breakfast", "you're having oatmeal", "you're sitting down", etc... it's kinda annoying to talk that much but her speech therapist says the more I talk the more I expose her to new words.

We also had a dinner training the other night with Natalie. The training did not go very well. We are trying to get Leila to have at least one bite of everything on her plate and sit down during the whole meal. So to begin we are trying the eating thing because that's more important then sitting. I tried to make a meal that I knew had things she liked and things she didn't. I don't think she really ate anything that night. It was very stressful. You know what she wants, you know why she is so upset, but she can't tell me. She gets so angry she bites what is near her. Like a doll or a foam letter. Thankfully not us yet.

I continue to have mini panic/anxiety attacks every time I think about Leila's future and schooling. Especially after attending the Mom's Club support group. The struggles and hoops you have to jump through for a special needs child seems overwhelming. The fear of the unknown and letting go of control over Leila while she attends school is hard too. I want to be able to keep her in my safe little bubble where no kid/adult gets frustrated with her or is mean to her. I know this is part of growing up and figuring life out but I have such bad "mama bear" syndrome with her it's going to be difficult. Both Natalie and Shannon, (our case manager) agreed that it would be hard for me but have tried to reassure me that this is what will be best for Leila and the services provided to her will be outstanding. So I keep trying to remind myself of this every time I start to stress about letting go of my baby.

Great Article to share

Chris and I have gotten a lot of friendly advice since Leila has been diagnosed. I have learned that many people have such a stereotyped view of autism. I admit I used to too. When I say Leila is autistic I often get, "Really? She doesn't seem autistic to me." Ughh. I have learned that autism is not just the kid in the corner flapping their hands or Rain Man. Autism is soooo broad and covers such a large spectrum of children you cannot fit them into neat categories.

So, with that being said, a lot of the advice, questions and suggestions we have gotten have to do with Leila's diet and immunizations. Chris and I stand by our decision to have our children immunized. We believe in protecting our children from harmful diseases. We choose not to put Leila on the gluten free/casein free diet. We do not believe that Leila is a candidate nor would she benefit from this diet. I have done a lot of research on these two topics and have talked with our ABA supervisor and a developmental psychologist about our decisions and feel confident in the choices we have made. My sister sent me this article from the Scientific American and I think it summarizes perfectly why Chris and I are not seeking alternative treatments for Leila. Please read it if you have the time. I think everyone could stand to be a little more informed about autism. There is so much to know.

http://www.scientificamerican.com/article.cfm?id=desperate-for-an-autism-cure

Leila's ABA therapy

Leila’s ABA Therapies

Leila’s first therapist shows up at 9:30 in the morning. Right now she only has a T/W/TH morning therapist. Her M/F mornings have not been filled since two weeks ago. Apparently ABA therapy has a high turnover with a lot of “just out of college” people filling the positions. I would think it takes a very special person to have the patience and tolerance to work with autistic children and stick with it for a long time.

So the therapist shows up and then goes through Leila’s binder to see the previous therapist’s notes. Throughout the session the therapists keep notes on what Leila says, how many times she says it, what reinforcers worked, what type of behaviors and how frequent, how many tantrums… etc. This takes anywhere from 10-15 minutes because they also decide what programs they will run and prepare their sheets to fill out during the session. So the therapist will take Leila into the playroom and that way they can use our toys/books and then some bring their own toys/books. Leila also has a special box of toys that are only used during her sessions as “reinforcers”. Meaning she has to do something in order play with them (yes, this is a cause of a lot of tantrums during her sessions). A few of the programs they are doing right now are a matching program, an echoics program, and a motor skills program (like stand up, sit down, one arm up). They then take the last 15 minutes of the session to fill out any more forms in the binder and record any data in their charts.

Leila’s morning therapist is Sonja; she is also the lead therapist on Leila’s case. She has been with the PFCA for the longest. She is strict with Leila. This morning Leila did NOT want to go into the playroom with Sonja. She became so upset that she started choking, causing herself to throw up. During this I am standing in the kitchen not sure of what to do. Should I interrupt? Would that compromise the therapy? Back and forth, back and forth. Crying myself. Finally, Sonja called me in after Leila threw up. Automatically I comforted her. Leila kept telling me “color, color, color” because at the end of every session she comes out and colors. I had to tell her “Leila you are okay, you cannot color right now”. My heart was just breaking. The thing that gets me too is the therapist said when I walked in “I think she might be sick”. So I said “No. She is not sick. She is so upset she is choking.” Stupid. So Sonja asked at that point if she did things differently then the other therapists. I gave her a look and said “Well, yeah. You do.” We then had a conversation about what she was doing differently and what could be done. I also called the supervising therapist and left her a message with my concerns.

At a certain point you have to ask what’s too much? I will not let Leila get to that point again. I will walk in next time to calm her down. I don’t care if it compromises the therapy. I don’t care if it reinforces her tantrum. I won’t let her feel that way again.

On a different note we had Leila’s transition meeting for when she turns three and gets turned over from the Regional Center to the school district. We met with the Croce elementary school therapist. She explained the whole assessment process and what Leila could qualify for. Leila has two assessments, one in January and one in February. She could potentially start school at Croce the last week of March after she turns 3. She will go everyday and it could be a half day or a whole day (8:30-2:15). Half the day would be ABA therapy and half preschool. That’s more school then Lucy has. Croce has their own wing for their special needs program. It is fenced off from the regular elementary and has 5 classrooms (3 mild to moderate classes, 1 severe, and 1 for speech only) and their own playground. I have heard nothing but good things about the program. All of their employees are ABA trained!! I am excited for Leila to start but I am hoping she will only need the half day program. They said I cannot co-op. I cannot imagine letting go of her for a whole day. I know it would be what is best for her but I can’t stand to think about it yet. That’s a long time to be away from me.

Affection

I don’t know if I should get this personal in this blog but I’m hoping that typing my thoughts down will help me to relax and be more positive about Leila. Sometimes I worry that Leila will stop being affectionate. She’s already selective with hugs and kisses and it seems lately that she is even more so with me. I made her angry last night because I kept giving her kisses in her bed. She fussed and then turned her back to me. Sometimes it’s really hard to accept this about Leila. That she will always be careful about affection.

She’s been this way since she was a baby. She was awake all the time and preferred to be in her swing than in my arms to be rocked to sleep. I should say that within the past year Leila has become increasingly affectionate. For awhile she’d let me rock her to sleep before we gave up naptime. She will sometimes just come up and give me a hug or a kiss, she does let me soothe her, and she does prefer me over others. I take advantage of these times when she is spontaneously affectionate. Natalie, our ABA supervisor said they have exercises they can do to help Leila be more comfortable with affection. They take brushes and run them all over the child’s arms, legs, and face and they relax. I hope that Leila will one day be able to freely cuddle with me and I hope to hear her say that she loves me. It’s hard to not think that I created this. Was I not affectionate enough with her? Did I pay too much attention to Lucy? Should I have held her instead of putting her in the swing? I run through the same questions every day.  I try to remain positive about Leila. But sometimes my thoughts just bog me down. I should be happy that my child is happy and healthy. She is not dying, she is not sick. I guess I am just still mourning the loss of that “normal” child. It’s still incredibly hard to accept right now. Since Leila was born I’ve always said in 3 months it’s going to get better… I’m still saying it.

Leila is starting to communicate

Over the past two weeks Leila has shown significant improvement in her communication with us. Now, when Leila wants something she points to it and says "look". So, for example, at dinner tonight Leila wanted to sit in Chris's lap. When Leila got into his lap she then pointed to her plate across the table and said "look" so we handed it to her and she was happy. So, we'll take it! She also communicated "open" last night while trick-or-treating. She kept handing me her lolly pop and saying "pen" I finally figured out that she was saying "open" just pronouncing the "o" very quietly. I guess it's because of the way I say it to her... I tend to emphasize the end of words I guess. The last word she's communicating is "more" she shows us the sign for "more" and sometimes says it. Her favorite book right now is Good Night Dinosaur so when I told her we were all done she signed "more" to get the book back. So, of course I gave it to her :)I am trying my best to emphasize using sign language with Leila. Every word I say I use a sign if I can. Like: "more", "up", "all done", "help", "open", "food", "drink", "please", "thank you".

What would seem minor to some people these are HUGE steps forward for us. You know, the best example I can give of a HUGE step happened last Thursday when we were at MOPS (Mothers of Preschoolers... put on by a church here in Livermore and the Mom's go into one room and are fed breakfast, have a speaker, and then either a craft or discussion while the kids are in childcare - it's really awesome) we dropped Lucy off at her class and Leila got upset and didn't understand that she was going to a separate classroom. I managed to get her over there and once she calmed down she walked into her classroom, waved and said "hi". So awesome, I almost cried (well I got teary eyed). That was the first time she has ever done something like that.

We had a great Halloween. Lucy's preschool had a carnival Friday that Leila got to go to and she went nuts running around the building. Saturday Chris and I had an adult party to go to and Sunday night we had a kid party to go to. Lucy is of course a pro at trick or treating and once Leila figured out that she got a treat every time she walked up to a house she got the hang of it. Who can resist a little clown just standing there staring at you?? There were a lot of other two year-olds at the party too so it was good for Leila to be exposed to kids her age. It's amazing the differences. These kids are speaking in sentences and I'm happy about Leila saying "hi". I really hope that Leila can soon speak to me the same way the other two year-olds where talking to their Moms. You never realize how important communication or just speech is until your child can't do it. I think I totally took advantage of how articulate Lucy was at this age! It makes me appreciate and cherish all the little ways Leila is growing and improving.

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!