Goodbye Karin

It's always difficult losing Raquel's therapists - especially when it's someone like Karin who has given me such great advice and guidance. But, sadly, today was her last day.

Cari came for her regular morning ABA session and Karin overlapped for that a bit. She did her assessment report to turn in to Regional and then did some sensory stuff when it was time to do that according to Raquel's schedule. Again, once Raquel gets the whole Visual Schedule concept, I think she'll really like it. She was very talkative today and scored 100% on her intraverbals.

Raquel became very frustrated when working with Karin and ended up having somewhat of a tantrum. I put the music on and she calmed down and was able to continue. Maybe she was upset because she had just finished the ABA session and thought she was done working.

Final thoughts from Karin? She said that she's very happy to see how much Raquel has progressed, although there obviously is room for more improvement. She said to be vocal with the school district - to ask questions and hold them accountable. She said to find out what sensory programs they offer, thoroughly check them out (which is hard because I'm only able to visit the schools one week prior to Raquel's start date), and to find out how much interaction Raquel will have with "typical" developing kids, stressing the importance of this. She also reminded me that no one can tell me if and when Raquel will ever stop improving. I continue to be optimistic. Again, look how far she's come in such a short time.

Final sensory input? When in doubt - go with proprioceptive input. She said that Raquel is so difficult to read at times and I'm literally going to have to play around with it and observe how certain inputs affect her. Some days she may be more tolerant to stronger inputs and some days the stronger inputs may bother her. It's just kind of hit and miss. She wants me to continue with her current sensory schedule and once she starts school, her new OT will make changes.

I think Gabby pretty much summed it up when it was time for Karin to leave. She always helps sterilize her toys after the sessions (if she's not in school) and today she said, "C'mon, let's go so my mom can cry." Which, of course, I immediately did. Fortunately, I took these before then.





Thank you, Karin. You will be missed.

First Parade

I reluctantly took Raquel to her first parade this morning. I wasn't planning on going because I thought it would be too overwhelming for her, but after speaking with Jennifer last Friday, was convinced that I should give it a try. I can't just keep her inside and away from overstimulating things. That's not how life works.

She did really well - that is, until the parade started. But, in all fairness to her, the parade started almost an hour late and she was a trooper waiting and lasted nearly 2 1/2 hours. The last half hour wasn't pretty. She seemed very tired and just over being there. And, I didn't handle it well. One of the things Jennifer told me was to read her cues and act on them. I could tell she was getting irritated but thought that once the parade actually started, she might enjoy it. I should have left when I noticed her becoming aggitated but instead I allowed her to escalate. And escalating is not a good thing.

My sister pushed her in the stroller, screaming and kicking, while I lugged all of the stuff I had taken with me back to the car. Once I put her in the car seat, she stopped. It was as though she just needed a familiar place. She was happy and laughing all the way to my dad's house, where we waited until the parade was over.

The experience didn't turn out as well as I had hoped, but I'm glad I took her. It was nice to hang out with some family, and really good for Gabby to get out and have some fun with her cousins.

I love this picture of Raquel and Steve (my niece, Lauren's, husband). They just moved back from North Carolina and we hadn't seen them since January. Raquel went right to him. She must have felt all of his positive energy! :-)

Visual Schedule Implemented

Since Raquel is starting preschool in January, our ABA Team is trying to help the transition as much as possible by working certain things in to her sessions that will soon be part of her new routine.

Today Cari implemented a "Visual Schedule". It is basically a strip of cardboard with 4 pictures velcroed to it. The pictures represent Raquel working, playing, bouncing, and listening to music. Raquel takes the picture off of the schedule and matches it to the picture velcroed to her work station for that particular task. She'll be using something like this when she starts school. I guess this kind of schedule helps prepare kids for changes in routine. The schedule is only displayed during her therapy sessions and they rotate the order in which they do the activities. This is what it looks like:



This is the "work" station - where it's ABA therapy as usual:



It made the ABA session a lot different - and it went by very fast. Normally we don't listen to music during the session (unless we have to), and we certainly don't take time to go play. Raquel seemed to like the change and I think she'll do really well with it.

What A Difference A Day Makes

Today's session with Jennifer was the complete opposite of yesterday. She was happy, engaged in all trials, scored very well - and I don't think even displayed any behaviors. She really seemed to enjoy working today, and had a smile on her face throughout the entire session.

After the session, we had our monthly Team Meeting. It, again, went really well. It always starts out with them asking me what concerns I have before we review her data and discuss program modifications and changes. Today, my only real issue was with her starting to somewhat tantrum a bit again, so we discussed this for some time.

She actually had a tantrum during the Team Meeting so Janine was able to observe how they are now compared to earlier months and make suggestions. I don't know what provoked the tantrum tonight but my gut tells me she was just tired from the ABA session and was mad about not get 100% of my undivided attention. Janine recommended that, because the tantrums are so much more mild and that Raquel is not doing such self-injuring behaviors, that we put a little tent in her bedroom and fill it with pillows. When the tantrum is in the very earliest stages, she wants us to immediately put her in it and keep her there until she calms down. Janine said that it might be a couple rough days at first, that the tantrums will most likely escalate once we put her there, but it will definitely get better.

Tonight's mini-tantrum was attention seeking. Although I wouldn't make eye contact while she was upset, Janine said Raquel kept looking at me, trying to get my attention. I'd move away and she'd get up and come to me, even saying, "Mama! Mama!" but since she wasn't calming down, I didn't pick her up or really acknowledge her. Janine eventually took her in the bedroom and played "I'm Yours" and she completely calmed down and was fine for the rest of the night.

We also talked about her GFCF diet and how supplements play a role in this. I've been so fortunate to be given such wonderful advice from our Herbalist/Iridologist, Chiropractor, Therapists, other Moms, and even strangers reading this blog, going through the same or similar things we are. It's just so overwhelming because you can't do everything everyone is telling us to do. I told Janine that I'm trying to find a "DAN" doctor (DAN stands for Defeat Autism Now), and she just happens to know someone here that has one. I'm not saying that I don't like Raquel & Gabby's regular Pediatrician, it's just that DAN Doctors are more in tune to the whole diet/supplement thing, which is where I need a lot of support because the diet part is a huge component with Raquel.

I'm confident tomorrow will be another great day therapy wise.

Not Wanting To Work

Because Gabby and I have been so sick with the flu, Raquel did not have sessions last Thursday or Friday - giving her more than a weekend off.

Yesterday, my mother-in-law watched her while I went to the office. Cari came for the morning ABA session and she had a pretty off day. Cari didn't know if it was because I wasn't there (this was the first ABA session I've ever missed), or because she hadn't had a session in several days. Regardless, she didn't score very well. And speech was pretty much the same. She was very clingy to me and wanted to be held. She didn't want to talk to Mary much, and was just somewhat engaged in the activities.

She had a great morning with me today - very happy and laughing. I fed her before Jennifer came and had her all ready to go. We were listening to music and having a good time when she came. Soon after Jennifer arrived, she started to tantrum. It wasn't a severe tantrum, but seemed like she was doing it to protest the session. She wasn't seeking my attention - she wanted down if I held her. Jennifer said that because she would start then calm then start back up and calm again showed that it was definitely behavior provoked. But, if you think about it, her ABA sessions are 5 days a week. Even though that routine is good for her, it certainly must take its toll on her at some point and I guess today was the day.

Hopefully she'll be more cooperative tomorrow when Janine overlaps with Jennifer. After the session, we have our next team meeting.

A Happy Girl Today

Raquel was in such a great mood today. She had a good session this morning with Cari, but didn't feel like working for the most part, though she did score well and was pretty vocal. It seemed like she needed a lot more breaks today than usual.

She also had her vision and hearing tests. Her hearing is fine but they couldn't pass her on the vision part because she was too distracted. For the hearing, she sat on my lap and the nurse stood behind us with these noisy toys and would randomly make them go off to see if Raquel would turn her head in that direction. She didn't miss one - and they were in random intensities and she'd hold them in different directions. For the vision, the nurse would drop these balls from across the room and see if Raquel would watch them drop. The balls were pretty small to start with and the smallest was probably the size of pearl bead. She was watching them at first, and then got too distracted with them being on the floor and wanted to go play. The nurse then got out blocks of different colors and would ask Raquel to pick the color. Since I wasn't confident that Raquel knew "purple" when asked, I made it kind of like the matching trial in her ABA sessions and asked her to "match" or "put with same." She did this a few times, but, again, became very distracted and wanted down to play. The nurse basically told me that I know she can see and hear and that getting a pass on vision for a child this young is extremely difficult. And, once she starts school in January, her teacher and therapists will be assessing her on a regular basis.

Speech was funny! Mary brought one bag of toys - THE most desired bag, mind you - along with a pillowcase full of toys. Raquel saw her pull up through Gabby's window and came to greet her at the door. Mary could not even get the door closed behind her before Raquel noticed the bag. She sat down on the floor and looked at it, and then would look up at Mary. I didn't know what to expect!

Although Raquel was pretty quiet during speech, she was very engaged in all of the activities and seemed to really enjoy herself - even clapping for herself when she'd do something Mary would ask of her. Today Mary brought these drawers with an object on the outside. Mary would ask her to pick the ball or the car on the outside of the drawer and open the drawer. She did this a few times and pulled out the plastic ball inside. Mary then asked her to put the ball in these magnetic cups she affixed to a cookie sheet.

She also had this magnetic doll house where we would affix little pictures inside to the room it needed to go in. Although her fine motor made this difficult to do, she did her best and was praised for her efforts. We also played with actual doll house furniture. It allowed Raquel to manipulate smaller sized items and she did really well. She also had fun putting the little people in and out of the bus.

Then she got out this little red fan. Mary would turn it on and we'd watch it spin, and then Mary would say, "Stop!" and turn it off. She asked Raquel to turn it back on by saying, "Go!" and Raquel instead said, "Do it!" so she did. The next time, Mary asked her to say, "Do it!" and Raquel said, "Go!" She's so stubborn. But Mary really likes to see this side of her. She's excited for Raquel to start school and says it will be great for her and she's curious as to how her being out of her comfort zone will play into her learning.

A great start to our therapy week!

School District Assessment Tests Scheduled

I spoke with the School District Psychologist, Lorraine, this morning. She called to schedule Raquel's assessment tests. This is when she will be evaluated by therapists from the school district, as well as a teacher (hopefully hers), and they can determine what programs she needs and set goals for her. These assessments will be done on December 3rd, 12th and 17th at 11am. Lorraine says it will take approximately 1 1/2 hours. The reason we need to have so many is because of scheduling conflicts with the individual therapists.

Cari was off today but Jennifer was able to fill in with a quick session in between her other appointments. She did really well, except got very tired towards the end and fell fast asleep while Jennifer was completing her paperwork. I'm looking forward to a restful weekend. It's been a really long week!

Changes In Sensory Input

Again, more input from Karin regarding Raquel's sensory processing. She actually showed up at the perfect time. Raquel was just starting to get really wound up - was very happy and smiling, but bouncing off the walls a bit like she has been these past couple of days. Karin immediately got the rock filled pushing toy and had her push that thing across the room a couple of times. She calmed right down. Karin said that she appeared to be growing, which is throwing her system off and making her unable to self-regulate.

Because of this, Karin made some changes to how I've been giving her the sensory input. For starters, no bouncing on the fitness ball until I see her again next week. She said that Raquel needs heavy and predictable proprioceptive input right now that works both her upper and lower body. Pushing the weighted toy works primarily upper body, so she also wants me to do jumps with her to engage her lower body. No spinning, no swinging, no twirling, no crashing - absolutely nothing unpredictable. This is going to be tough because everything I've become accustomed to doing, I can't. And I'm already having trouble identifying what is and isn't considered predictable.

I also asked about the best way to transition her to a school setting since Raquel is so sensory. Karin said that her classroom should have a sensory area where they can work with her as needed. She said that I need to get involved as much as possible, ask tons of questions, and make sure that they are handling ALL of her needs. Karin used to work for a school district and tried to somewhat prepare me for the transition, saying that her first two weeks will probably be pretty horrible and that she will be way out of sorts until she adapts to the new routine. But, then again, I prepared myself for the worst as far as the ABA therapy goes, and Raquel did an amazing job adapting to that.

Unfortunately, Karin has given notice so I am losing another therapist. This is going to be really hard since she helps me so much with all the sensory stuff. And it's going to be unfair to Raquel. Since we are approaching the holidays and she is so close to her transition, the likelihood of her receiving a replacement OT is pretty slim. Karin's last day is in two weeks.

Janine overlapped with Jennifer for the afternoon ABA session. Raquel was extremely vocal and pretty much talked the entire time, which Janine was happy to see. She made a couple program changes and also took pictures to make something called a "visual schedule", which is what she will be using in school. She took pictures of Raquel sitting at her table getting ready to work, playing with dolls in Gabby's room, as well as listening to her music. These will then be affixed to a designated wall by velcro (just like the PECS) and she will need to match the pictures to what activity she is doing.

I also received a call today from the school district nurse. She scheduled a routine hearing & vision test for Raquel this coming Monday, after her morning session with Cari.

More Sensory Seeking

Besides her doing really well with Lori on Friday night, Raquel overall had a great weekend. She had a great ABA session with Cari yesterday morning and was very vocal. She was displaying some behaviors that seemed sensory related - hitting, scratching, biting, pulling hair - but wasn't upset when she was doing it. It was like she was trying to get some kind of input in that respect. I'll need to talk to Karin about it tomorrow. One thing I have noticed is if I let her fingernails grow out a bit, the scratching definitely increases. She must be able to feel that they are longer or something.

Speech was another story. I've experienced some pretty interesting speech sessions, but this was really out of the ordinary. Mary continues to bring her pillow cases filled with toys instead of her bags, and Raquel finally leaves them alone (for the most part). Yesterday, we played trains briefly and then Raquel started jumping. Mary was happy to see her do this and was encouraging it and Raquel was repeating "Jump!" to Mary while she was laughing and jumping. But she refused to stop - to the point where she wouldn't participate in any activities no matter how animated Mary and I got. Her jumping became stronger and stronger. I don't think it started out to be sensory related, but it definitely turned in to that. I finally had to put the music on so she would calm down, but even after she calmed, she wanted nothing to do with her session, which was very odd for her.

Raquel not participating did give Mary and I a chance to talk. She reviewed Raquel's scores from the Rosetti Assessment that she did at the start of her speech therapy in February, and then again in mid-October. She's showing some definite progress! In February, she was scoring about a year behind her age. Last month, she scored about 6 months behind. Mary will be turning in a report to the School District to help with the assembly of her new therapy team.

Mary and I also talked about how Raquel has what they refer to as "splinter skills", where she'll be functioning at one particular age level and then have these abilities to do other things at higher age levels. Elizabeth used to talk about that a lot when Raquel started saying the "Me mad!" stuff. Her being able to label her emotion was considered a splinter skill.

Mary feels the same way I do - that Raquel has all the words up there and just needs to figure out how to express them. I am convinced that she is going to start talking one day and then will never stop. She continues to take me off guard by words she says and by using her 3-word sentences. Last weekend she said, "Where you going?" after I told her I'd be right back. She also said, "Don't worry" when she fell down a couple times and I asked her if she was okay. My favorite is when she calls, "Mom! Come play!" from her bedroom. As limited as it is, it's nice to have some kind of conversation with her - even if it's only a few words. That's definitely a start!

She was, again, pretty sensory during Jennifer's session. Working at the table is not typically an issue, but the past couple of days it has been. Today, all she wanted to do was push the table when seated. Jennifer asked me to get the walking toy that Karin filled with rocks and said that it appeared she was seeking that kind of input. I basically need to talk to the Sensory Queen tomorrow and figure out what to do. Jennifer did say that it could be something as simple as the time change that threw her sensory processing off. We'll see what tomorrow brings.

Happy Halloween!

Last night we had an opportunity to watch a truly amazing performer - Jason Mraz - play in front of thousands of people. Although we were very excited about going, I did have reservations with (1) taking Gabby to her first concert at age six, and (2) leaving Raquel behind.

My friend, neighbor and co-worker, Lori, was the brave soul who volunteered to watch Raquel. She hasn't watched her since she was a baby, but has followed our blog and is very much aware of what is going on because of our regular conversations. I took Raquel to work with me one day this week so she could "play" with Lori and get familiar with her. I spoke with her ABA therapists this week about leaving her, and they were all in agreement that I should. After all, I am entitled to get out and have a little fun. I do have to admit that I literally had my cell phone in my hand the entire night - just waiting for Lori's call saying she was having problems and I needed to come home. But, she never called.

The concert was fantastic. I have never experienced a more uplifting, positive, make you feel good concert - and I've been to many! It was all about singing, dancing, good energy and just having a great time. Gabby couldn't believe all the people there. Of course she had to dress up. Please don't call her a cat - she was a "cheetah." (See my cell phone? I wasn't joking, Lori!)





Gabby doesn't quite understand the celebrity part of it and kept asking me why there were so many people, which made it even more enjoyable watching her reactions to strangers screaming to them onstage - especially Toca. She truly is his biggest fan. And he did amazing. We are so proud of you, Toca!!! xoxo. Here we are backstage before they went on. My girl knows how to work that pink hat.



Besides being just over the top entertaining, one of the coolest things they do is creating a stage backdrop where you can email/text pictures to a website and have them randomly displayed throughout the show. Of course, I had to send a few. And guess what happened? During the very start of "I'm Yours" - Raquel's therapy song that I've posted so much about - she was displayed right on the big screen. Mike, Gabby and I screamed, "Raqi!!" at the top of our lungs, and it literally brought tears to my eyes, especially considering they had reserved a ticket for her as well and I was sitting next to her empty seat. They showed her picture three times during her song. It was very touching.

The concert went longer than I had expected and I was, again, clinching my cell phone and dealing with major anxiety all the way home - even though Mike kept reminding me that Lori would have called if there was a problem. When we pulled up to the house - after 1am - the lights were on and my heart sank. I ran in to the house to find Raquel greeting me at the door. I feared the worst, that she's been beyond difficult and Lori, being the kind hearted person she is, just wanted to deal with it so I could have a fun night. Turns out that Raquel had a great time with Lori! She slept twice for an hour each time, but I think she realized I wasn't home and couldn't get herself settled. Once we got home, she went right to bed for the rest of the night. Lori said she was not a problem at all. Hopefully Monday she won't tell me different. :-)

As far as Jason goes ... I have to say that he is one of the most genuine people you can ever meet. He knows about Raquel and how his music is part of her therapy. She was was one of the first things he asked about when he saw us. And he never hesitated to do this with Gabby - even though he needed to be other places.

This is the drum head he signed for her. He made it look like a pumpkin, thanked her for spending Halloween with him, and asked her to color it orange...

...which was the first thing she did this morning when she woke up.

Here is how "I'm Yours" sounded last night. It's actually taken right above where we were sitting! Enjoy!