Friday, November 19, 2010

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.

Sunday, November 14, 2010

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.

Wednesday, November 10, 2010

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.

Tuesday, November 2, 2010


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.

Monday, November 1, 2010

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.