A Therapist In The Making

Gabby has been playing therapist for the most part during Raquel's sessions with Jennifer. It is the cutest thing to see. It has become quite apparent that Gabby has learned an enormous amount from the ABA Program, which is really a good thing. It's important that we stay consistent outside of therapy, and with Gabby involved, it's like a therapist is constantly in the house! Not only does she know how to pretty much set up every program, she also has the language down. She is constantly having her "mand" for objects - choosing between two things - but she'll also request that she say the item once chosen and if she doesn't, Gabby will say, "Okay, let's use your pointer." and have her point to the object. It is too funny. Sometimes I feel bad because it seems as though Raquel doesn't get a break!

Here they are doing PECS, where she hands Gabby a picture to get a preferred object...

...choosing "plate" during her Receptive Object Labeling Program - and Gabby giving her the partial prompt by pointing to the plate when Raquel refused to choose it...





...strengthening her fine motor skills by working on the drawing...



...and tapping on the table during Non Verbal Immitations.



It has truly been such a joy to watch my girls participate in therapy this way. Of course, Jennifer has complete control of the session and gives Gabby instructions on how to do things. But it's just nice to watch my girls do it as sort of their own functional play. They truly have a beautiful and special bond.

Final ABA Team Meeting

Today it really felt like we were in the home stretch because we had our final ABA Team Meeting. I've come to know our daily therapists so well, and it will be really weird not having them here on a regular basis. I'd feel much better about all of it if I knew what was going to happen with the transition. But now it's just a waiting game until the IEP in January, and that is just two weeks away.

We started out by talking about the transition - mostly my disappointment with how it is being handled thus far by the district. Janine assured me that someone from the team will be with me every step of the way from this point forward. Jennifer is going to the medical evaluation with me and Cari will be going to the psychological one. All three are attending the IEP, and Janine said she will personally go with me to observe the school(s) and different programs available to Raquel. It will certainly be nice having their support. They are the ones who have worked with Raquel on a daily basis for the past six months, and I am confident that they will be able to identify what program is best suited for her. I know the district will not be pleased about me not going with their initial recommendation, however, my obligation is to do what is best for Raquel, not the district. And I have no problem being the bad guy. Thanks for teaching me that, Mom. I really wish you were here to help me with all of this.

After the brief talk about the transition and upcoming IEP, it was business as usual. We reviewed Raquel's progress and Janine made a few program changes. Mike stopped by with pizza and salad for lunch and was able to stay for a short time.

One of the sensory issues with Raquel is her constant need for oral input. Everything goes in her mouth. We've tried vibrating toothbrushes. We've tried teethers and nooks. We've tried just about everything. Today, Janine recommended that I get one of those coil things that you put your keys on and wear around your wrist. Instead of putting it on Raquel's wrist, I fastened it with a clip to a belt loop on her pants.

When she starts putting toys and stuff in her mouth, I'm supposed to redirect her to the coil and have her chew on that. We're hoping that pretty soon it will become an automatic thing and that she'll reach for the coil when seeking that input instead of what's placed in front of her - especially during the sessions. She doesn't seem bothered by it all and has reached for it - most likely out of curiosity - several times. Hopefully this will work!

ABA Or No ABA - That Is The Question

Yesterday Janine overlapped with Jennifer's session. Raquel had a great session on Tuesday - was so happy and playful - and she did pretty well yesterday, too. Lorraine came to observe the second half of the session, asked me and Janine questions, and filled out more paperwork.

When it was time for her to leave, I again, started asking questions - mostly because I wanted to see if I would be given the same answers that I got from Angela earlier this week, and I also wanted Janine to hear what the district was suggesting they do for Raquel.

Basically Lorraine said the same thing - that they don't feel that the ABA program is suitable for Raquel - that it is "too structured" - and that they want to put her in a class geared towards slow developing motor skills.

Again, I want whatever is best for Raquel. I have spent an enormous amount of time and energy this year dealing with not only her ABA therapy, but speech, occupational & physical therapies as well. My biggest concern is how the district is deciding that the ABA program is not suitable. They haven't discussed it with me - and they certainly haven't discussed it with our ABA Team, who has worked with Raquel on a daily basis for the past six months. They are basing this decision from their extremely brief observations made of Raquel, when she was confined to a small area and all out of sorts.

The class they are recommending is definitely the afternoon class. When I mentioned my concerns about it interfering with her nap and not being a good time for her to be in school, Lorraine said that she would probably sleep on the way home. I don't want Raquel to get a 15 minute power nap. I want her resting comfortably at home, so my entire household will rest comfortably through the night.

Fortunately, my ABA Team will be attending the IEP with me in January and will be able to help me address a bunch of my concerns. Right now, I am planning on observing both ABA and non-ABA classes before enrolling Raquel in either one of them.

Transition Stuff - Very Frustrating

I was under the assumption that all of these school district therapists that we've been meeting with for evaluations were going to be Raquel's new therapy team. Not the case. Turns out they are just the "diagnostic team" - the ones that are going to be part of the IEP in January and putting her goals in place. I also thought that I was going to have several options when it comes to picking her school, but it turns out that that will be pretty slim pickings as well.

Last Friday, we had our second evaluation with the school district. Lorraine, the district psychologist, was present along with Lynne (speech), Tim (applied phys. ed.) and Angela, a special needs teacher. Again, it didn't go very well. They confined her to a small area and then started out by giving her difficult fine motor tests - which immediately frustrated her. Once Coach Tim got there and was able to do his own evaluations - having her walk across wood beams and things of that nature - she snapped out of it. She really seems to take to the coach. They all basically told me that they don't feel that Raquel is autistic and that she appears to be affected by more of a neurological condition. Of course, they aren't allowed to make any kind of diagnosis - it's up to the doctors to do that - but they did suggest that I pursue a referral to a neurologist when I have the medical exam at Regional. But Regional is the one that denied the neurological referral the last time I was there, stating that they just didn't see the need for one.

This morning Lorraine overlapped during Cari's ABA session. She wanted to observe Raquel working in a more familiar environment. But today Raquel did not want to work and didn't score well. I don't think Lorraine got much out of the session. She's going to stop by later this week to observe one of Jennifer's sessions.

This afternoon Angela overlapped with Mary for her speech session. She was able to watch Raquel interact in a playful manner with Mary, and was able to see her in a calm setting. She wasn't very vocal today, but was playing pretty functionally with Mary. Mary was also able to discuss Raquel with Angela and give her some insight as to how she has progressed for her over the course of this last year.

At the end of the session, I started asking questions because I have many unanswered ones. I know that we have the IEP scheduled for January 5th and that this is when my diagnostic team will be providing us with their evaluation reports and putting some goals in place for Raquel. When I started asking about her class, Angela told me that it is pretty much unanimous that Raquel will not be attending the ABA based program, that she will be going to one that specializes more in motor planning delays.

When I asked about the school, I wasn't given names but was told that she didn't know if the class would be a morning one or afternoon one. I already had my hopes set on her going to school in the morning so I could have her home for lunch and naptime. The thought of her having to go to school in the afternoon instead is very upsetting to me, knowing how difficult these hours can be at times. And if she doesn't nap during the day, she wakes up - pretty consistently - at 3am. It completely throws off her sleep patterns and I am not prepared to go backwards in that respect.

I'm also pretty frustrated because if the district doesn't feel the ABA school program is a fit for Raquel, then was this whole ABA therapy a waste of time? And don't even get me started on the gfcf diet. FRUSTRATING. I know that Raquel has made a lot of progress so I'm trying not to do the would have/should have/could have stuff , but it's hard not to.

Today we scheduled Raquel's last two speech sessions. Because of the holidays, Mary is off until January, so her last day will be on Raquel's birthday. It will be really strange not having Mary any more. But she is so optomistic about Raquel going to school. She said that this is when she thinks Raquel will really start to flourish.

A Beautiful Mess

I always think of my situation with Raquel when listening to this song - it may be a mess, but it's certainly a beautiful one.

This was taken a couple days ago in Norway at the Nobel Peace Prize Award Concert. Enjoy.

http://www.youtube.com/watch?v=AKanbidzvUQ

It's Almost Transition Time

And it's starting to feel like it. Not only am I completely exhausted from it all, I can tell that Gabby is ready for a change. We've been having some behavior and discipline issues lately - which I know are directly related to Raquel getting such constant attention. But, one month from today will be Raquel's final ABA session. The following day she will most likely be starting school.

I'd be lying if I said that this last year has been easy. In reality, it has been one of the most difficult and challenging experiences I have ever faced. Coming to terms with having a child with special needs has been hard, but okay for me to accept. Maybe that's because my motherly instict kept telling me to keep pushing for a developmental assessment before she turned two. Reminder: it took five - yes FIVE - pediatricians before I was granted one. I was told over and over again to stop comparing her to Gabby's development, that Gabby is way too dominating and does everything for her, and that Raquel has great eye contact and was too "social" to even be considered for an autistic assessment. Then the fifth doctor who, after giving me all the above comments, asked the golden question: "What does your gut think, Mom?" Finally, my voice counted. And when she couldn't give me a valid reason for Raquel losing previously acquired speech, agreed to the assessment.

And here we are. It's been such a long ordeal, but we've seen great progress.

I don't know what the hardest part for me is. Having to put work on hold is tough - even though that was an obvious choice. Not able to have much "me" time has been difficult, though that sounds very trivial and selfish considering the big picture. Feeling the stress and strain on my marriage has not been easy - they say the divorce rate when you have a child on the spectrum is 80% - and I have to say I understand why. Once Raquel's ABA therapists leave, we're on our own to deal with her the remaining 22 hours of the day. It's impossible to remove yourself. We have to constantly remind each other that we'll get through it and try to focus on why we are together in the first place. Needless to say, that is easier said than done.

And then there's Gabby. This past year has not been easy for this six year old at all. Raquel getting to play with all of these really great toys with these really fun people has brought out a bit of jealousy at times. But I have to say that we have been blessed with two amazing kids. Gabby displays more patience than most adults, and her unconditional love for Raquel is a beautiful thing to see. She tells everyone - I mean, EVERYONE - that she has the best little sister in the world. She also tells them that Raquel has Autism and has a bunch of therapists, but says that makes her even more special.

Reflecting back on this past year - through all the ups and downs there were and will continue to be - I've been asking myself how I might be able to help others in the beginning stages of their first therapy year. It was such an alone feeling at first. Everything was so new, you don't know what to expect, all these strangers are in your house. It feels like your life is literally turned upside down and it is extremely overwhelming.

Everytime Elizabeth would leave, she would always say, "You're not alone. We're a team. You can do this." That is exactly what I needed to hear because I felt alone, that no one understood, and that things would never get any better. I still find myself saying this over and over again in my head when things are trying. And I keep thinking about how many families are out there that just need to hear those words. Again, it's 1 in 150 these days and that equals a lot of people.

So, as my little angel transitions on to school, I'm making a promise to myself to do whatever I can, in whatever capacity, to help families who need this kind of support. I just need to figure out a way to do so.

More Appointments Scheduled

I heard from Regional this morning and they have scheduled another psychological evaluation as well as a medical evaluation. Both will take place the first week in January. The psychological evaluation is to determine whether or not they can give Raquel a diagnosis. If she is given one, then continuing care through Regional will continue. The medical evaluation is to see if they can detect any characteristics of underlying medical causes - I think. When I asked the scheduling lady why they needed to do it, she said it was because they were required to have that information on file. But I vaguely remember someone telling me that she would be seen by a pediatrician specializing in special needs kids and would be able to spot certain characteristics that a regular pediatrician wouldn't be able to. The psychological evaluation is estimated at two hours and the medical one will be approximately one hour.

I also spoke with Jan, Raquel's physical therapist, and we have decided to discontinue further sessions due to scheduling conflicts. Because the holidays are here and I've got appointments with the school district and Regional in addition to her regular therapy, there just isn't enough time. Jan was very encouraging and wished us the best.

Today my mother-in-law came down to watch Raquel so I could take Gabby to our parent/teacher conference. Unfortunately, Raquel started out by biting her in the arm - it was not behavioral, just as though she was seeking oral input - but, regardless, broke skin and left a nasty bruise. Raquel bit me on the face the other day when we were dancing. Just shows how you always need to keep your guard up, even when situations appear fine. Luckily, that was the only aggression she displayed towards her today.

I was just leaving the conference when Jennifer arrived and as soon as Raquel saw her, she started a tantrum. Jennifer doesn't know if it was because I wasn't home yet or because she just didn't want to work. But the music calmed her down, and she was perfectly calm when we got home - just very tired from it all. I didn't think she'd have much of a session, but she actually did pretty well. They even did the Visual Schedule which I really thought wasn't an option when I first got home.

On a very positive side note, Gabby did great at her conference! These aren't typical parent/teacher conferences because I homeschool Gabby, even though she goes to school 4 days per week. This is when our Education Specialist - the person who gives us and coordinates our curriculum - reviews all of the homework she's done and quizzes her on information she should have learned in all subject areas (math, science, history, literature and language arts). She's also required to read books out loud to make sure we're keeping up with it. I just get to sit there and hopefully watch her shine. And that she did. Our ES even emailed me and thanked me for the great conference and to tell Gabby how proud she is of her progress. That was really nice for this Mom to hear!

ABA Outing At The Mall

This afternoon we had Raquel's ABA session at the mall. Since she is transitioning to the school district system so soon, our wonderful ABA Team is helping with this transition by scheduling an outing once per week where they can work with her in daily life experiences. These outings obviously don't involve using "the box" or recording data. They are just helping me learn how to deal with her outside of her home environment.

So why would we choose the mall of all places for a little one with sensory issues and being so timid when outside her comfort zone? Because she's just got to learn how to cope as harsh as that may sound. It was either going to the mall or the park, but since the park is becoming more and more familiar to her, I thought the mall might be the best choice today.

And she did great! I was so proud of her. There were plenty of kids in the play area running around and screaming at the top of their lungs - Gabby being one of them, mind you - and it took Raquel a few minutes to warm up. Cari held her hand and walked around and then pretty soon she was up and walking on her own. She was startled many times but didn't have one meltdown at all. And she enjoyed sitting on the giant turtle. :-)



Today was the first day that she has ever left the play area and wondered off. I was shocked. Once that happened, we decided to go walking in the mall. I pushed the stroller and Cari held Raquel's hand to keep her from getting into stuff and to keep up the pace, and she walked and walked. We went to the family lounge - another familiar place for her - and today was also the first day that she ever left it on her own. At one point, she bolted from me and started going down the very busy food court. I was pleased - not because she bolted from me but because she felt comfortable enough to do so. She has certainly come a long way.

The only downside to the outings is that it allows me to observe other kids her age or younger and to see where she should be, and isn't, developmentally. Sometimes it really hits home, but other times, I just think of how much she has progressed since the start of all of this. That is what I try to focus on the most. Gabby is the one who always sums it up when she says, "Sissy, we're never going to give up on you!" And she's 100% correct.

Raquel's Song

I am very happy to post that Raquel's song - "I'm Yours" by Jason Mraz - was nominated last night for the Grammy's Song of the Year category! We are so happy for Toca & Jason and are so blessed to have this song continue to work such wonders in our daily life. It has gotten us through some really difficult times, and even though we don't have to play it nearly as much in sessions - and when we do, it's usually fun and during music play - hearing it is a constant reminder for us (and probably our ABA Team as well) of Raquel and her accomplishments. The song should win just because of Raquel!

Therapy went very well with Cari today. Raquel was in a very playful mood and did great, even though she had a few more behaviors than yesterday. Tomorrow is our outing day when Cari will meet us at the mall for her therapy session.

First Meeting With School District Therapists

This morning we had our first meeting with the school district therapists. It started out a little rough because I stopped to talk to the district psychologist, Lorraine, and the occupational & speech therapists took her to another part of the room to start their evaluations. I should have took her there and sat with them first but didn't, and soon a tantrum started - and it lasted about 15 minutes. Oh well. It's good for them to see that side of her as well and none of them were freaked out by it at all. And I guess they see it on a regular basis anyway.

Our new speech therapist, Lynn, knows Mary very well and will definitely talk to her since she's worked with Raquel for close to a year. She wants to get Mary's input before putting her program/goals in place. Leigh, the occupational therapist, seems very cool. She was there for just a short time and wasn't really able to do much of an evaluation because of Raquel tantruming in the beginning, but I answered a bunch of questions for them and was given paperwork to fill out. Tim (I think) is the physical education guy. He was able to make some observations but plans to do most of his evaluation next week. I did mention my concerns with her being scared in unfamiliar environments and he said that it's just a matter of "desensitizing" her and that he'd make that one of the first goals.

They all seemed really nice and were great with Raquel. Towards the end, I sat down with Tim and Lynn and they both stressed how they are going to be designing a program geared towards Raquel as an individual and not based on how she scores on assessments. This was great to hear. We meet again on the 12th and this is when I will get more information regarding how the program works, how often they treat her, and more of what to expect.

On a side note, I have decided to go ahead and have Raquel re-evaluated by the Regional Center - even though it isn't required and it went really bad the last time. My reasoning behind it is because if she is given a diagnosis, we would continue to receive services from Regional, and the more services she can get early on, the better it is for her. Watching her progress through the ABA Program these past six months has been very encouraging.

Speaking of ABA... Raquel had a really great session with Jennifer today. No behaviors, very cooperative, very happy throughout. That is a big change from yesterday when seeing the Visual Schedule go up on the wall sent her in orbit. She just didn't want to work. Jennifer couldn't do half of the programs and we spent the first part of the session trying to calm her. I was very relieved today - especially considering she had a rough time this morning at school. And we were there 1 1/2 hours. She fortunately went down for a nap right when we got home and I was giving her lunch with Jennifer arrived. I suppose being rested and fed helped in that regard. Hopefully she'll have another good day with Cari tomorrow.

Sensory 101

I've been reading a really great book by Carol Stock Kranowitz, M.A. called "The Out-of-Sync Child Has Fun - Activities for Kids with Sensory Processing Disorder." In this book, she breaks out activities to do based on developmental age and by what sense the activity helps (proprioceptive, vestibular, tactile). These activities are what she calls "SAFE" - standing for Sensory-motor, Appropriate, Fun, and Easy - and are designed to help develop and organize a child's brain and body, while keeping things safe. SAFE activities encourage the development of sensory systems and physical, cognitive, language, social, and emotional skills.

Before she gets in to the specific activities, she has several chapters on sensory processing basics - and comments and suggestions from other "sensory moms", which I am finding extremely helpful.

She defines sensory processing as "the normal neurological process of organizing sensations for our use in everyday life. Typically, our brains receive sensory information from our bodies and surroundings, interpret these messages, and organize our purposeful responses. As we climb the stairs, our brains sense that we're moving upward, forward, and from side to side. Usually without conscious effort, we make adaptive responses. We flex and extend our legs, alternate our feet, slide our hand along the banister, maintain our balance, keep upright, and watch where we are going. We are probably not even aware that our bodies are making these adjustments."

She goes on to say that "Sensory Processing Disorder is a complex problem. It may affect children's development, behavior, learning, communication, friendships, and play. It may affect one or all of their sensory systems. Children with SPD often do not feel safe. When they attempt to meet ordinary challenges, their responses may be ineffective and clumsy. Try as they might to be careful and to succeed, they frequently fall short. Unfortunately, children do not grow out of SPD; they grow into it, finding compensatory ways to cope with confusing, unpredictable, and threatening sensations. They do what they must to survive, playing it safe as necessary."

A child with SPD may walk into a spider web (the sensory part) and not know what to do in response to it (the motor part). We would brush the web off, but a child with SPD would not be able to respond efficiently and instead become very anxious and upset. This is why it is so hard for me to determine what sets Raquel off. Sometimes it's just impossible to tell - especially if I'm in the other room.

One mother in the book explains SPD to others by referring to a bee saying, "You know that feeling you get when a bee almost lands on you? Your heart races or jumps? That's a fear response. Kids with SPD get that fear response from things we don't - very loud noises, echoes, people sitting too close, visually busy walls, etc. Therapy helps overcome this as it 'teaches' their nervous system."

The author recommends doing the SAFE activities outside whenever possible, stressing the importance of moving and playing outdoors and being able to inhale the fresh air. Fresh air encourages healing and happy chemicals (endorphins). She also says to watch what your child likes to do - that sensory seekers often make it quite clear what their sensory systems need.

It will be interesting to see how these activities effect her.

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!

The Transition Meeting

This morning we had Raquel's Transition Meeting. It went really well. Found out that Raquel will most likely qualify for two schools in our area - one being conveniently on the way to Gabby's school. Sounds like she'll be going Monday through Friday from 8am - 11am. And the student/teacher ratio is only 2:1! I was so happy to hear that. She'll basically be getting the same therapy she's getting now, just in a school setting.

For the meeting, Ken (from the Regional Center) pretty much just briefed the District Psychologist, Lorraine, on Raquel's background and gave her Janine's initial report. Lorraine then went into details of the programs offered and prepared me for what was to come. I had to sign a release form authorizing Lorraine to go ahead with her assessments. We scheduled the IEP for Monday, January 5th.

Janine was also present to give her input and Raquel was the happiest, most affectionate girl throughout the meeting. She wouldn't stop giving me kisses and hugs, which they all enjoyed seeing.

My favorite part of Janine's report is her current observations of her: "Raquel is a bright, sweet and affectionate little girl who continues to make great strides in her development." I continue to believe with all my heart and soul that she will do just fine.

Pretty Vocal Today

Raquel was a chatterbox today! It's days like this that make me wonder if she's going to turn in to Gabby #2.

She had a really good ABA session this morning with Cari. And she worked fast. Cari was pretty much done with her session probably an hour and half into it. A few behaviors, but for the most part, very cooperative and talkative. And, Raquel scored 100% on PECS! We've certainly come a long way in this program.

Raquel was very happy, interactive and talkative throughout her entire speech session. Today we played with dolls. :-) We took turns putting them to sleep, modeling "shhhh", and at one point Mary was pretending to sleep and snoring, and I'd ask Raquel to go wake her up. She listened pretty consistently, but one time said, "No" and went over to her toy box instead. After a few moments, Mary said, "Nita, wake me up!" so I did and then we both just cracked up laughing. I told her that I'll really miss the speech therapy. It's the one session a week that I get to act like a little kid, forget all my worries, and basically just play and laugh. I told her that I would be having the transition meeting this week, so she will be dropping off a report before that. She said that once I sign some kind of release form, she'll be able to discuss Raquel's case with the school district psychologist.

One side note to add: Last Saturday was my father-in-laws 80th birthday party (Happy Birthday Dad!). I prepared myself for the worst in dealing with Raquel - it was held at their community golf course clubhouse and had close to 100 people, the vast majority Raquel not even knowing. She did amazing! So great that she even was able to sit in a high chair at our table and have dinner with everyone. She was walking all around the place and wasn't the slightest bit scared. She even took a little nap while we were cutting the cake!

Great Accomplishments With Physical Therapy

This morning was the last physical therapy session for hopefully just a few weeks. The Regional Center assigned Jan a certain amount of hours towards Raquel, and today she used all that were given. Jan will now turn in an evaluation report along with her recommendations to keep Raquel under her care until she turns three. She is hoping to start seeing her every other week instead of weekly, since she's made such progress. Due to the paperwork trail, this may take several weeks before she is authorized to do so and her therapy resumes.

But we had wonderful news this morning. After reviewing the paperwork, Jan noted that Raquel had met - or EXCEEDED - all of the goals assigned to her during her initial evaluation! What wonderful news to hear - especially given the fact that her delay in walking was the one thing that got her assessed in the first place!

Jan was so pleased with how Raquel was today. She was going up and down curbs and hills, climbing on the equipment, walking backwards, sideways, pivoting herself around - just obviously much stronger and able to do more things. She walked all over that place to near exhaustion. I could barely get her home and in clean clothes before she fell fast asleep. Jan showed me some more techniques to use when I'm working with her on the stairs, and asked me to tell the psychologist in our transition meeting that she recommends "Adaptive Physical Education" for Raquel. I guess this is therapy in a group setting. Not exactly sure. But our transition meeting is next Thursday, so I'll get more info then from the psychologist. I should also be given names of schools in the area (probably just a handful) that Raquel will qualify for and that I can hopefully start checking out.

This encouraging PT news was actually bittersweet to me. Earlier this week, one of her therapists made a comment during conversation that she didn't know if Raquel would ever have the ability to do something that I had asked about. It wasn't a specific task, it was just a general thing. So general that I don't even remember my question. It wasn't a huge thing at the time, certainly didn't bother me at the time, and I am 100% confident that it wasn't said in ill regard, but I became very emotional once I started replaying it in my head. And not because I'm being unrealistic about where Raquel is developmentally. I feel that I have a very accurate assessment of her abilities - especially considering I deal with her therapy on a daily basis.

It bothered me because I felt that she was already being labelled. And that part I hated. As a mother, I have never - not once - given up on her, even during her worst times. I've always believed in my heart that Raquel would catch up eventually and have a normal and productive life. I still feel this way. Look how far she has come already! That comment just made me start to not only question myself but also think about how people are going to judge her as she ages, if she continues to have these challenges. I see how she is judged by complete strangers that assume her sometimes distracting behavior is my lack of parenting. The rolling of the eyes, the "MY child would never hit ME" comments, etc. are very annoying, even though they don't bother me as much as they used to, or happen nearly as often. (Side Note: Cari told me that Elizabeth tells parents that the next time they get "the look", to give that person the "mental finger." It really does work!) Next time you see an upset child in a grocery store or mall, please think of me and Raquel. They may be going through the same thing we are. Again, it's 1 in 150 now. That equals a lot of people going through the same thing.

Janine overlapped with Cari for the afternoon ABA session. Raquel did really well - and was very happy throughout. We discussed how to integrate the sensory input into the session as well as developing her motor planning. Seems like we still need to play around with this a bit. Janine wants me to find out from Karin next week how she recommends transitioning a sensory child into a preschool setting. She also said that starting next week, we are going to be doing weekly outings, replacing one in-home session, to help with the transition.

Sensory Motor Planning

Jennifer had an early session today so she could overlap with Karin. One of the things discussed in our last Team Meeting was Raquel's limited motor planning and how the ABA Team could help develop this during their sessions. Motor planning is part of occupational therapy, so they needed Karin's input.

To help with her motor planning, Karin recommended that they do a few things during their sessions:

• Increase the proprioceptive input by doing the jumps, crashes, crawling out of the beanbag, etc.
• Increase vestibular input to help strengthen Raquel's muscle tone by primarily doing the fitness ball bouncing, but to only do this AFTER giving her the proprioceptive input. The timing is important.

A few other general recommendations from Karin were:

• PECS. She wants the ABA Team to help develop Raquel visually cross midline. So, if Raquel picks up the PECS with her right hand (which she is consistently doing), Karin wants their hand to be on the left so she'll have to reach over to the left. I guess this whole "crossing midline" thing doesn't fully develop until age 3. This is when a hand dominance typically takes effect. Even though Raquel is behind - I try to think of her as a year younger developmentally - it's not a critical thing to have this develop by her 3rd birthday. However, based on Karin's observations, she feels that certain tasks are becoming just a learned pattern and not a hand preference. Raquel consistently - and accurately, mind you! - throws with her left. If she has something in her right hand, I am never on the defense about getting hit because I know she doesn't throw right handed. But, she eats, drinks, and brushes her teeth with her right hand. She draws with her left. PECS, as mentioned, is a right handed thing.
• Keep Sensory Items - Sensory: Lately, the ABA Team have been using the ball bounces at times for both her interverbals and verbal immitation programs. They bounce her while singing a song that they want her to fill in with words or to make immitations of sounds they are demontrating. Karin recommended that they keep sensory related items strictly sensory, and not associate it with the working part of the session. She said to try to give her the sensory input first, then target all the verbals afterwards. We'll have to see how it goes.
• Less Time For Stimulating Items: I've posted many times about how Raquel loves the spinning tops. It's one of her biggest reinforcers. Today, she was having table time and playing with them, and Karin asked Jennifer to take them away because she noticed she was getting really wound up. The same thing happened a little later with the play phone. It appeared that the longer she was allowed to play with these items, the more overstimulated she would get.
• The "Song": If the song is needed during a session, Karin suggested that it be Raquel's break from therapy. She said that Raquel has associated the song to her self-calming, and to try to force her to work while the song is playing will only bring out behaviors. I could sense that today. Karin asked me to play the song at one point and Jennifer continued with her session. Raquel was arching her back and doing everything she could to get away from her. Once she was allowed to escape, she walked over to the radio and sat and listened. When the song was over, she came back and joined us.

Another fascinating day in regards to the sensory thing. I'm always so amazed at how well Karin is able to read Raquel.

Fun At The Pumpkin Patch

We took the girls to the Pumpkin Patch at Bate's this morning. Of course, we had to take pictures.

Raquel didn't know what to make of those things at first. And there sure were a lot of them!




But after a few short minutes, she was walking all over the place enjoying herself and having fun with all the hay!

Social Group At The Park

Instead of our regular ABA session today, we had a social group at the park. What a great idea! This not only allowed Raquel to interact with kids her age also having learning challenges, but also allowed me to interact with families going through the same thing. It also showed Gabby that other families have kids like Raquel. And it was a very comfortable atmosphere. I didn't have to explain my circumstance to any of them since they are going through the same thing. And I didn't get the "look" from judgemental strangers like I get at the grocery store, mall, etc. on a regular basis.

Raquel seemed to really enjoy herself! She had to warm up to walking unassisted, but after about 5 minutes was really all over the place. They provided fruit, juice, and all GFCF diet snacks - which was wonderful. It is really hard for her to watch us eat anything that she can't have. We also received a bunch of information on some resources available as well as a listing of restaurants that have GFCF menu selections.

Here is Raquel and Janine - the supervisor for her ABA Program:



And Raquel and Jennifer (aka, J-Lo):



She had fun playing with the parachutes...


...as well as smearing the shaving cream...


...although it did get quite messy! Here's Raquel & Cari:



What a nice way to end our therapy week!

Sensory vs. Behavioral Tantrums

Today during Raquel's OT session, I was able to get some insight from the Queen of Sensory (Karin) on how to determine whether or not one of Raquel's tantrums is sensory related or simply behavior provoked. Either way, they are hard to watch, but today I learned quite a bit from Karin - as usual.



Raquel was in a very playful mood this morning and greeted Karin at the door like she always does. It started out to be just another typical OT session but then a tantrum started for what I thought came out of no where. We both tried unsuccessfully to redirect her, so I picked her up, put the song on, and in a few minutes, we were back to work. Karin then asked me why I did that. My immediate response was that it was a sensory tantrum, and I didn't want her to get hurt. Karin disagreed. She said that it was definitely behavioral and that I should have gotten a pillow in case she threw herself back. She said that what I did was bail her out of a frustrating situation, completely reinforcing the behavior. GREAT. Now our occupational therapist is turning in to a behavior one...

Karin then described what she felt happened: They were working with these big, snap on beads. Raquel was sitting between Karin's legs, and Karin was having Raquel push in and pull off the beads. Raquel became frustrated because she couldn't do it without Karin's help, then walked away from it. Karin and I started having a conversation - not giving Raquel any of our attention - and the tantrum started, gradually escalating.

Then she asked me to describe the tantrums yesterday during Jennifer's session. I told her how Gabby was wound up from being at school, I was irritated at her not calming down and instead running through the house, and that Raquel just got way overstimulated - one time at the table when Gabby was sitting across from her and messing with her toys. Karin said that would be considered a sensory tantrum, a tantrum provoked by energy changes. She also reminded me how much Raquel feeds off my energy source and that I need to constantly remind myself to stay calm.

We were talking about all of this as Karin was working with Raquel. She took the visual over-stimulation one step further by showing me something. Karin was giving Raquel the plastic eggs to crack open one by one. Raquel was having a great time, being very successful, and had a huge smile on her face. Karin said, "Watch this" and dumped the whole bag of plastic eggs in front of Raquel. Her temperament completely changed. The smile vanished. She got extremely overwhelmed by it, and instead of picking them up one by one, she was just aggressively touching all of them with no kind of play action. Karin then put them away and got Raquel back to where she needed to be, but it was AMAZING to see the difference in her by such a simple thing. Karin wants me to notice what we are doing during the ABA sessions that is causing her to be the most frustrated, that it could be a visual thing with simply too much stuff being out at once. Me witnessing this was HUGE and makes me much more aware of how such sudden changes can really affect her.

She had a great session with Jennifer this afternoon. I tried to keep Gabby preoccupied for the most part and we didn't have one tantrum. After the session, we had our ABA Team Meeting. Again, very encouraging and we all seem to be on the same page. My biggest concerns right now are Raquel having the tantrums again (although they are much more mild), and Gabby interfering during the sessions she's here for. Janine put a "Gabby Plan" in place tonight, which I think will really help. It will allow Gabby to feel like she is a critical part of Raquel's therapy, but at the same time, confine her to the kitchen area or office to do special arts and crafts "needed" for the sessions.

The Transition Phase

I've always known that it was just a matter of time until we would lose all of our wonderful therapists we've grown so close to and would have to move Raquel on to her next therapy chapter. And here we are.

Last week when Janine overlapped with Cari, she asked me if I had talked to the Regional Center. I said no because why would I and they certainly don't call me. She said that Raquel is only 3 months out before she will be leaving her current ABA program at age three and that a "transition phase" is supposed to be happening now. This is when my social worker, Ken, sets up a meeting with me and our School District so they can start their own evaluation process on Raquel. Her current therapists are invited to this meeting, however, due to scheduling conflicts, may just send them a report with their feedback. Raquel will be assessed by all new therapists from the school district. She will have another evaluation (possibly) from the Regional Center psychologist in January to see if she can be given a diagnosis. They will also be doing an IEP (Individualized Education Program) at this point as well. This is when they detail specific goals for her to help her succeed in school.

According to Ken, this Transition Meeting does a few things:

• Introduces me and Raquel into our School District.
• Introduces me and Raquel to the School Psychologist named Lorraine. Mary, our current speech therapist, works for the district and speaks very highly of Lorraine and says we will be in great hands. Great news! (Side note: Even though Mary works for our school district, she will no longer treat Raquel. Through the district, she only works with children who have Apraxia or who are hearing impaired.)
• Lorraine will review Raquel's abilities from the initial assessments and compare her to where she's at now. She will then assemble Raquel's new "Team" of therapists.
• I will have a chance to voice any concerns and ask questions.

Raquel's next assessment with the Regional Center Psychologist can take place anytime between the transition meeting and when the IEP is done. Ken also said I wasn't required to have her re-evaluated if I didn't feel it was necessary. I'll need to talk to our current therapists regarding this. I was extremely disappointed with how her original assessment at Regional was handled and a good part of me doesn't want her subjected to any more stress than necessary. Ken did state that the school district will be doing their own evaluations and could simply report their findings back to the Regional Center in order to continue their services.

So how do they transition her to all new therapists? Cold turkey! Since her 3rd birthday is on a Monday, she'll have her last ABA session the previous Friday. The therapists she meets with weekly will have their last sessions the week before her birthday as well. And then what? Well, we're not supposed to be in contact with any of them anymore and Raquel just moves on to her new program in the school district. It's kind of weird. You would think they would transition gradually - for everyone's sake. To have Raquel go from pretty intense, in-home, daily sessions to a school setting seems difficult - especially for a child so demanding of routine. But, maybe switching everything all at once makes it easier on her. We'll have to see.

I have mixed emotions about it all. On one hand, I'm concerned about not having the daily support I've become accustomed to. Every day I have a trained therapist (or two) in-house that I can ask questions, get feedback, learn techniques from, etc. And I take advantage of this a lot. On the other hand, I am looking forward to getting my life back to somewhat normalcy, if there is such a thing now, where therapy will take place outside the home so I will be able to dive back in to my work and have a break from it all. But thinking that way always makes me feel and sound so selfish.

Raquel has had decent ABA sessions so far this week. Unfortunately, Gabby triggered two sensory tantrums this afternoon so she may no longer be able to participate in Raquel's therapy - at least in the capacity she has been. Tomorrow night we have our next Team Meeting after her regular session.

A Funny Speech Session

This afternoon's speech session with Mary was the funniest session I've ever observed.

Even though Mary brought her three bags of goods last week, she still had a couple challenges with Raquel trying to dive right in to them - especially the bright yellow one. Today, Mary showed up with three PILLOW CASES instead! Raquel saw her pull up in the driveway and immediately ran to the door to greet her. As soon as Mary walked in with the pillow cases, Raquel cracked a big smile and started laughing. She totally knew why she brought them!

Once we sat down to start her session, Mary brought out these big animal puppets. One was a purple bird that made squawking noises. Raquel really took to that thing and must have played with it for 30 minutes. At first, she was startled by the noises. Raquel would go up to it and try to bite its nose and Mary would make it say, "SQUAAAAWWWK!!" really loud. Raquel jumped a couple times but then started doing it on purpose just to hear it scream at her. She was laughing and laughing and totally carrying on. And not just her typical laughing - we are talking about full on belly laughs where she was rolling on the floor and could hardly contain herself! It became contagious and pretty soon all three of us were laughing uncontrollably. Mary was so happy to see her demonstrate such an incredible sense of humor.

Mary also had these really cool magnetic animals. She had a cow, dog, horse & cat and this magnet stick that would lift them up. The animals (one by one) couldn't go back down until Raquel told them to do so, which she did. She was also choosing the animals by name. Mary did a couple tests for her Rosetti Assessment report that she has to turn in. One of them was Raquel picking out random items in a field of five. In the ABA sessions, she is required to pick the same item over again in a field of three. Today she had no problem identifying random items in a higher field. Mary also tested her on verb photos. She would show Raquel pictures of someone crying, eating, swinging, sleeping, etc. and ask her to choose what she was asking for. And she did great!

How were her vocals? Pretty limited due to all the laughing, although she was using functional speech when she was using it. Again, Mary is more encouraged to hear my list of words she uses in daily use instead of what she says during the speech sessions. I'm finally not offended when Raquel isn't vocal during speech. And it's only taken me 8 months to get to this point. :-)

Great Input From OT

Yesterday's session with Jennifer was definitely not typical. It started out well but soon in to it, a tantrum started, which Jennifer thought seemed sensory related instead of behavioral. Once she calmed down, she was able to continue the session as long as I was out of the room, which was really weird. Even if I distracted her by walking slowly in the kitchen, it would set her off. So I pretty much spent the last half of her session hiding out in the kitchen and being as quiet as possible.

I was really looking forward to Raquel's occupational therapy this morning. She hasn't seen Karin in two weeks and since she has been so "sensory" this past week, I knew Karin would be able to shed some insight. And, of course, she did.

As soon as Karin sat down to start her session, Raquel began wondering around the room aimlessly. She was very happy and laughing, but just seemed a little overstimulated. Karin immediately said that she needed some vestibular input and got out the fitness ball. Instead of bouncing her on it, she showed me how to do "crashes", where I roll her off the ball and on to the bean bag. This sudden impact gives her strong vestibular input. She did this about five times, then sat back and watched. In about 15 seconds, Raquel sat down in front of her ready to play.

A little while later, Karin sensed that Raquel was about to start escalating and asked me to get a bed sheet. She folded it in half and layed it on the floor. She put Raquel down on the edge and rolled her up. Once she got to the end, she grabbed the other edge, and while Karin standed, unrolled Raquel. This is a way to give stronger input as well. She also spinned her in my office chair - not very fast - and just five times. One thing she did tell me today is to monitor what direction I am spinning and Raquel's reaction to that. She said it is very possible that she may like spinning left to right, but could become aggitated if I spin her from right to left. Weird how all of that works. She said to think of the ear follicles like blades of grass in the wind. The wind blows one direction and they go that way. Then the wind blows the other direction, and they go the other way. That's what I'm doing to her by the spinning. If I spin her to the right a few times then go to the left, I'm not giving her the input she needs - I'm actually even contradicting it in a way.

My assignments from Karin in order to get the sensory issues back under control:

• Start bouncing her more consistently on the fitness ball - the same times every day and for the same length of time (singing the ABC song for instance, so she knows at the end of the song, the bouncing stops).
• Implement stronger vestibular input activities slowly, keeping track of the times I've done them, her reactions, as well as her delayed reactions. She said that some reactions could often take hours and that the only way I'll know this is by consistently keeping track of what I'm doing and when I'm doing it to see if a pattern develops.
• Continue having her push around her weighted push toy. This gives her the proprioceptive input she seeks.

So why are we having sensory issues again? Karin is convinced that it is because there was a change in routine - the biggest one being my husband going back to work and being gone all day. She said that all it takes is something slight to throw her off, and this was a pretty big thing. She also said that when he lost his job and was home, it happened then as well. Looking at probably a couple challenging weeks but am confident that I'll be able to get her back on track.