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.