Last Day of School

Today was Gabby's last day of school. Mike's mom came down to watch Raquel so Gabby and I could have some much needed one-on-one time. Her school reserved a waterpark and we had a great time chasing all of her friends around and talking with teachers. We were gone longer than I planned because I didn't want the fun to end! I took her out for a nice lunch, where she melted a couple waiters' hearts and ended up being completely catered to. Of course, she soaked it up!

The Out-of-Sync Child

Karin didn't come today for OT because she was out of hours, but Wendy showed up at her usual time - to a happy, smiling Raquel. It was apparent how Wendy witnessing Raquel carrying on last week changed her regarding play therapy. Today, she came with an arsenal of sensory processing disorder (SPD) ideas - including the most wonderful book written by Carol Stock Kranowitz, M.A., called The Out-of-Sync Child. I started reading it immediately and after a few minutes felt this book was written specifically for me and describing Raquel. One part that really struck me was a father's writing in a chapter called "Looking at Your Child in a New Light." He says:

"Accepting your child's limitations isn't easy. It's natural to want to deny that your child's difficulties are out of the ordinary. It's natural to feel sad when you understand how hard he must work. It's natural to feel guilty for the times you scolded him or got impatient because of his behavior..."

That really touched home for me because my patience level is at an all time low sometimes, and I do feel really guilty when I find myself being impatient with Raquel - especially when Gabby reminds me by saying, "No, Mom!! Your supposed to say 'hands down' with NO EYE CONTACT!" She's a little sponge and remembers everything all the therapists say and do. Karin jokes about it and says Gabby will have her doctorate by the time she's ten. Elizabeth thinks she'll be a teacher one day.

What is a Sensory Processing Disorder? It is when the central nervous system misinterprets messages from our senses. Remember how I described that Raquel has certain sound sensitivites, such as the start cycle of the dishwasher? Wendy gave me some insight today. After last week, she called a friend - who just happens to be a psychologist and the one that recommended her giving me the book - and she described it in more detail. She said to think of it as the "nails on a chalk board" feeling. Just the sound of that makes us all cringe, but imagine being a little thing like Raquel and playing and having a good time, when out of the blue, the nails on the chalkboard feeling happens because she was startled by something. She said that running faucets can sound like Niagara Falls - it can be that extreme. That's why it is so important for us to tell her we're about to do something that we know is stressful to her, such as saying "water on" before we do it. It allows her to prepare herself for the chalkboard thing.

Wendy's therapy went really well, as usual. Raquel was very cooperative and required no redirection at all. She recommends that we create a "safe haven" for Raquel - a small tent, box, an area with fluffy pillows, etc. - where she, and only she, can go to when she needs to calm herself or where we can put her when we need her to calm down. She wants me to work with Elizabeth on this next week. It's been discussed before but we've never implemented it.

Because of Raquel's allergies, Wendy and I also talked about putting her on the Gluten-Free, Casein-Free diet. It's something I'll be researching further. According to many, it can make a world of difference and has become very popular because of some celebrities swearing by it, such as Jenny McCarthy and Holly Robinson-Peete.

Happy Memorial Day!

I really enjoyed therapy yesterday. The whole day seemed much more calm to me, perhaps because it was a holiday and I didn't have to work at the same time her sessions were taking place. Or maybe it was because Mike was home and kept Gabby entertained. Whatever it was, it was nice.

Elizabeth came in the morning. Raquel was very stubborn and in her throwing mood, so we had to use soft toys. She mostly wanted to stack and knock down soft blocks. We spent a good part of our session discussing the ABA program in more detail. Currently, Elizabeth is one of the behavior therapists in this program but her job position is now transitioning to a more supervisory role, which is why she would not be able to stay with Raquel. She is not taking on any new "cases" and is actually going to be evaluating kids and recommending programs for them.

After speaking with Karin last week, I was under the impression that I would have a team of 3 people coming to the house daily. That is not the case. I will have a team of 2 or 3 therapists coming daily, but they rotate days to prevent Raquel from getting tired of them. It's still a one-on-one session. She says it is very intense - that they don't let Raquel get away with anything, and it will be very hard at first watching them put all the demands on her. I will also receive training and be held accountable for keeping things consistent throughout the day. But, she said by doing so, I will see immediate progress.

Raquel has been a little more physical this past week in regards to the hitting and scratching, so I was very happy to see Elizabeth. Again, behavior is communication, so we discussed the different scenarios when she is the most aggressive to see if we could determine causes. Instead of reacting (which is hard NOT to do when you are being hit), she wants me to ask her questions to force Raquel to communicate her needs. Even though she is not being verbal, her actions speak for her. For instance, Elizabeth had her sitting on her lap doing blocks. She started getting really fussy. Elizabeth held up two toys and asked her to choose which one she wanted. She continued to cry. Then Elizabeth asked if she wanted down. She immediately stopped crying. Elizabeth then gave her praises for "answering" and put her down.

Elizabeth's boss meets with the Regional decision maker on Wednesday for some unrelated matter but she is pretty confident Raquel will be discussed and a decision will be made. I personally feel that she has already been accepted into this program or Elizabeth wouldn't have spent so much time preparing me for it. And she just had this look about her yesterday - that she wanted to tell me more and couldn't.

Trish cancelled physical therapy because of the holiday, but we didn't find this out until after we were already at the park waiting for her. We decided to do our own version of "park therapy" and let the girls run loose. Mike was really happy to see how well Raquel is doing walking on unsteady surfaces, and he even went down the slide!

Mary came for speech in the afternoon. Again, Raquel wanted to do her own thing and wasn't very cooperative. She was babbling - a lot - and Mary was very happy about that. Mike came inside towards the end of the session and was able to sort of see how it works. I always tell him that speech therapy is the silly one where we get to sing and dance and be very animated. She never gets Raquel out of her comfort zone so behavior issues seldom occur, which is very refreshing. Mary is also the one that brings 3 bags of goodies and can easily move on to something else, like yesterday, if Raquel seems bored with it all.

All in all, a good day. We even made time to squeeze in a BBQ once Mary left!

Not Feeling Too Well

Raquel seems a little sick today so she wasn't as cooperative as she usually is with therapy. Karin continues to see improvements regarding her fine motor skills and is very encouraged by her many attempts at the demands she places on her. Halfway through her session this morning, she became very quiet and appeared bored with it all. Karin switched gears and brought out these little plastic eggs that you hide candy and stuff in during Easter. It's funny how they use simple things like that for therapy. I thought she was going to have her work on putting them together, but she told me that would be too frustrating for her with her not feeling well and all. Instead, she had Raquel break them open by smashing them with the palm of her hand. That works on her hand-eye coordination and also strengthens the palms of her hands for the wheelbarrel walking she's doing.

Karin ends her sessions by working on Raquel's self-feeding. It's not such a big mess anymore, although she does much better with Karin than she does with me. But, progress is progress and I take whatever I can get!

She was fussing a bit when Wendy first arrived. Her tears immediately stopped and she was all smiles when she realized who was here. They did some pretty functional play for about 20 minutes. Raquel was using a hammer to push balls through holes on one of the games she brought. After that, again, she appeared bored with it all so Wendy had to bring out something new as well. Towards the end of the session, she became VERY irritable and started throwing herself back, pulling my hair out and scratching me. Wendy has never seen her like that and didn't want to leave me! I thought that was really sweet because the only one that helps me with the behaviors is Elizabeth and Raquel started getting pretty physical with Wendy. I showed her the "pillow thing" and after a few more unsuccessful attempts, she settled. Once Wendy left, she went down for her nap almost immediately.

Both Karin & Wendy were very curious as to how things went with the evaluation, although I did leave Wendy a voicemail filling her in when we left Regional. Karin seems to think that the ABA program is a great way to go. She says I would have a team of 3 behavior therapists come for two hours each day and I'd still have all of her current therapists - with the exception of Elizabeth & Wendy. So that is how the monthly hours add up to 50-60. Karin said that it is a very intensive program but, because Raquel is so young, thinks that she'll show tremendous progress. It will be me (and Raquel) getting used to everyone in the house and not having a break during the week that will take some getting used to. Karin works with many autistic kids in the ABA program and said that the behavior teams are absolutely wonderful. She couldn't stress that enough so that's encouraging.

And then I told Wendy that Regional may be leaning towards the ABA. She said that it was a really great program and then, a few moments later, said, "But then you won't have me!" I told her I knew that and she just hugged Raquel. It was apparent today that the Wendy/Raquel bond is very mutual.

It's nice to be done for the week. Monday, Mike will be able to participate or observe in three therapies: behavior, physical, and speech. I know it's a holiday but I chose to take advantage of the services being offered and try to keep her on a routine. My job now is to get her feeling 100% by then!

The Waiting Game

I just spoke with my service coordinator at Regional. I called because I hadn't heard from anyone regarding Raquel's evaluation last Friday. I know it hasn't been a week but planned on leaving a voicemail just so they knew I was going to be persistent. To my surprise, I got transferred directly to Ken. He said that her file has not been received at the main center yet. Once it is received and then reviewed, it will be forwarded back to him at the San Marcos location. He has no idea how long that will take, but we won't know anything until then. I'll be calling weekly until I have answers.

Ken did voice his opinion that because she is so young, they will most likely switch her to the ABA program because it is the most structured. Until then, her therapy schedule stays as is.

A New Week

Most of my session with Elizabeth yesterday was spent discussing Friday's evaluation, and how both of us were so disappointed in the lack of direction I was given. I truly feel that it was not a fair evaluation of Raquel. All others were done at home, where she could be observed in a familiar environment. For Regional to assess her by confining her to one small room and giving her a couple boring toys was not right. But, again, it's Regional - where I am just a case number and the sensitivity is long gone.

Elizabeth is out of therapy hours and was only supposed to come by for 30 minutes. Instead, she ended up staying nearly two. She and I have a special bond that started the minute she called me to schedule Raquel's first session. She has two kids the same ages as mine and we relate on so many different levels. She even has a black lab! She was really concerned with how Mike and I digested everything over the weekend and wanted to make sure we were doing okay.

For me, I have come to terms with the fact that I've got a beautiful little girl with some form of a disorder or disability. That's hard to deal with, but it is what it is. My focus now is doing everything in my power to get her well, to keep her happy, and to follow what my heart feels is the right thing to do. I'm hoping that Raquel will be given additional therapy hours with her current therapists, however, if the ABA program is offered, I will take it.

Raquel had a great speech session. Mary gave us nursery rhyme cards to sing with, which she loved playing with. She was very engaged throughout the entire session - holding up items to show me, teasing us, laughing and basically just having a really good time. Mary showed me how the PECS (Picture Exchange Communication System) works, but is not convinced this is the right program for Raquel. PECS is a program that brings out communication by using pictures. Raquel would be given a chart with pictures on them and then is trained to hand me the pictures of what she is wanting until she is able to say the word or phrase. I personally feel that it would add confusion since she is telling me some things. Mary said that we would hold off on it for now, still pretty confident that Raquel has a much more functional vocabulary than she is using.

Screening Over - Still Waiting For Answers

Yesterday I was very encouraged about the screening once they called to confirm the appointment. The lady confirming it told me that I would have answers as to what direction we'd be going in with Raquel. Not the case.

Elizabeth and I met with the psychologist who had just a couple boring toys and asked me a million questions. We were enclosed in a very small room, and I could tell quickly that Raquel was getting aggitated by being confined (which is the main reason I wanted Elizabeth there - to help when the behaviors started to come out). The psychologist made her observations and occasionally asked Elizabeth to elaborate on my answers. Elizabeth was instructed in the very beginning that she was not able to answer questions for me and that if she wanted her input, she'd ask for it. I could tell they were irritated she was there but I wasn't. Several times, she took her out of the room to calm her down so I could continue answering questions. The evaluation took a little over a hour.

At the end, Mike came to sit in on her analysis. Basically, she told us that she is not going to give Raquel a diagnosis until they do an additional evaluation at age 3. She said that she is definitely showing some signs of autism as well as an attention deficit disorder and a sensory processing disorder. Because one does not stand out more than the other, she said that she was "in the mix." She is writing up a report to be submitted to the main person at Regional, who is conveniently out of town. This person will then decide what changes are going to be made with Raquel's therapy (if any). I was told to call my service coordinator at Regional in a week if I haven't heard anything.

I did speak with Elizabeth afterwards regarding it all. She recommends that Raquel go in to the Applied Behavior Analysis (ABA) program, but she isn't the one that makes the call. This is a pretty intense program but she thinks she will get the farthest on it. This would mean that therapy hours would increase from 20 per month to 50-60 per month. I would lose Elizabeth as a therapist as well as Wendy. I would still keep the same occupational, speech & physical therapists, but I'd be assigned 3 new behavior therapists. Hopefully I'll know what is going on very soon.

Therapy at the Park - It's A Good Thing

Today we had our physical therapy session at a local park called Kit Carson Park. I was a little reluctant to even go - picturing tantrums and head banging on the park equipment and all. As soon as Raquel spotted Trish, the crying started so I began preparing myself for another catastrophe with the PT.

Trish asked that I sit at a bench in front of the play area so I could observe the session. Again, I was hesitant but agreed. Just a few minutes into it, I realized that outside therapy is what Trish knows best. She started out by walking her to the playground with both Trish and Gabby holding Raquel's hands. Then she had Gabby let go and then Trish let go and just had her hand on Raquel's shoulder and then not at all. Whenever Raquel would stop and become insecure about her surroundings, she'd put her hand back down on her shoulder. Before I knew it, Raquel was walking all around on her own. Trish had her going up and down the steps on the playground, pulling herself up and on to the slide. She even went down the slide a few times alone (with big sister catching her at the bottom, of course.) And she laughed and laughed and laughed. We agreed that all further PT sessions should be done outside the house. Raquel walked from the little playground to the big one - going up and down curbs and hills and on varying surfaces. Trish was very pleased. She showed me ways to help ease her in to uncertain environments, which I'll work on with Mike over the next week.

Mary (speech) and Elizabeth overlapped today. Elizabeth is already over her assigned monthly hours and is basically volunteering her time at this point. They had great sessions with Raquel. Although she wasn't very vocal, she was playful and cooperative and was demonstrating a lot of effort. They discussed picture therapy to bring out her vocals but Mary is not convinced this is the way to go just yet and will think about it more over the week. Mike was there towards the end of the session and was able to talk to them both, ask questions, and give them his own feedback.

Elizabeth is still going to her evaluation on Friday - again, off the clock - and said it will most likely take a couple hours. She is calling this the "let's rule out autism" screening. I'm trying to be optimistic but also preparing myself at the same time. It will be interesting to see how the evaluation goes.

H.A.L.T.

Yesterday during our behavior session with Elizabeth, I mentioned how frustrating it can be trying to figure out what Raquel is trying to tell me. She will cry unconsolably throughout the house at times, and I have to piece together what I think she wants. Elizabeth introduced me to a concept called H.A.L.T. - which stands for Hungry, Angry, Lonely, Tired - and suggested I use this with Raquel. Once I determine what she is upset about, I can break it down further by category.

Then it happened during our session. All was fine and then she started crying for no apparent reason. I would ask her what she wanted, but all she would do was cry. Since it was mid-morning, I thought it might be a hunger or thirst thing so I proceeded to ask her to choose a cup of juice or yogurt. She wanted the yogurt. Halfway through the yogurt, she started the crying again and wouldn't eat anymore. The tantrum started to build - nothing would redirect her, not even the music. Elizabeth had me put her on her bed and give her a stuffed animal to try to get her to calm herself for several minutes but she would eventually come back out to me for comfort. I repeated this about five times to no avail and then, beyond frustrated, threw my hands up in the air and said, "Now what?" She told me to keep doing it, but I couldn't. I picked her up, held her tight so she couldn't hurt me and started rocking her in the rocking chair. After a few minutes, she started calming down. Fifteen minutes later, she was fine.

Although Elizabeth says that I know my child best and to follow my instincts, she said that doing what I did completely reinforced the behavior. I told her how hard it is for me to not know what she wants. She understood but also reminded me that one of the main things Karin wanted me to work on this week was teaching Raquel self-calming techniques. Right now we are attempting to find transitional items that she can go to when stressed. Nothing in her bedroom worked yesterday, so we'll need to find something else. This is definitely going to be a challenge.

She also noticed a couple more red flags that she wasn't previously doing. Now Raquel will turn certain items upside down - such as toy cars and chairs, and she's also doing the hand stemming with her shadow. Elizabeth will be going with me to the autism screening on the 16th and, since she worked at Regional for so long, is pretty certain she will be able to go in with me during the screening, which will be wonderful.

Mary didn't come yesterday for speech therapy because she had a sick daughter, but next Monday she is overlapping with Elizabeth and we will have a longer session.

Showing More Progress

Even though Raquel was easily frustrated during occupational therapy yesterday, she is showing steady progress. I am very happy to have Karin on a weekly basis now. It was apparent that Raquel recognized her, but this is the third time she has come - with the other two visits being at different times and overlapping with other therapists. Karin is really looking forward to getting a routine going with Raquel and thinks she will be much more tolerant once she is used to her being there at consistent times and is familiar with the toys she will be using.

Again, great feedback from her. I mentioned to her that whenever she started to get fussy, I would bounce her on the exercise ball. She said not to do that - that it could reinforce the behavior if that is what she is seeking - and to increase bouncing her on it from 3 times per day to 6 times per day. She is hoping that will give her enough sensory input to help her throughout the day. How all the sensory stuff works is still really fascinating to me and I don't do it much justice in my explanations. The good news is that her throwing her head back is now an isolated event and I can usually predict when it will take place so I can block it.

Karin is using a cork board with pegs that Raquel pulls off. She holds it at different heights and angles to not only strengthen her hand-eye coordination but to also strengthen her core. At one point, she had her sitting on the ball and stretching way up to pull off the pegs, going from her right side to her left. She seemed to like it okay - the main thing is to keep the activity brief, give her a break when needed, and go right back to it. She also had her put poker chips into a tiny slot. She had difficulty pushing them in, but did fine taking them out. It's easier for her to pull things out right now than to push in. Karin said that Raquel displays a lot of effort, that even though she can't always complete the task, she makes many attempts at it, which is a wonderful thing.

Raquel did become frustrated on several occasions. She started crying and it was really hard to redirect her. Karin wants me to work with Elizabeth on this next week. The goal is for Raquel to find ways to calm herself instead of us having to do it for her.

Karin also works on Raquel's self-feeding with utensils. That is still very much a work in progress, but it is improving. It's just one big mess of applesauce, though. Yesterday Raquel repeated, "No mouth" when we were playing with the pegs and is making solid choices.

Wendy came at her regular time and I don't think Raquel has ever been so happy to see her. She watched her pull in the driveway from Gabby's room and immediately started laughing and jumping up and down and hitting the window. When Wendy started to walk up the driveway, Raquel went to the door to greet her. She is by far the most attached to Wendy.

Wendy brought her usual toys and Raquel was playing much more functional - pushing the balls through the holes instead of rolling them and playing catch. She also put a lid on a container, which is the first time she has done this. She was very affectionate with Wendy - giving her hugs and wanting to sit on her lap. We've come a long way from her first visit with us when she was attached to my body and would do nothing but throw whatever was put in front of her. Although it is moving slowly - it IS progress.