Autism Evaluation Set

I just spoke with Regional. They will be performing Raquel's Autism evaluation on Friday, May 16th at 11:30am. This will be done in North County, so I won't have to drive to San Diego like I was previously told. The evaluation is an hour long and is done by a psychologist specializing in Autism. But, again - REGIONAL. Maybe I should bring my own toys...

Great Sessions Today!

I am so encouraged after today. Elizabeth came late so she could overlap with Trish (PT) to make sure another catastrophe didn't occur. Elizabeth was greeted with huge smiles and Raquel did really well being challenged by her. She was obviously frustrated at times but was easily redirected back to where she needed to be. I know I say it all the time but - Elizabeth ROCKS!! - and I was really glad to have her here to help with the PT.

I was very hesitant about Trish coming because of what happened the last time. Today was much better and I have a greater confidence level with her. (SIDE NOTE: She did have issues about Raquel being treated by Dr. D, but once I truly listened to what she was saying - I was so defensive at first - she just wanted to make sure they are on the same page therapy wise). Trish was very happy that Raquel is climbing so much more - even standing on the rocking chair in her room. She really is making great progress. Trish showed me exercises to do on the fitness ball to strengthen her core, and also wants me to do the "wheel barrow thing"-, where she walks on her hands, 3-times per day, but briefly. Raquel actually did pretty well with Trish today. She was really aggitated only once or twice, but I was pleased with how Trish handled the situation this time, and, of course, Elizabeth was a big part of that.

We also discussed Raquel's uncertainty outside of the house - how it takes her a few minutes to warm up to outside environments. We are now going to start "outside therapy" to break her of this. BT, PT & ST are now going to make some portions of therapy (only 10-15 minutes), take place outside. When I see Trish next in two weeks, we are actually going to meet at a park so her entire therapy is going to be outside.

We had a WONDERFUL speech therapy today! Raquel was just in rare form and was playful and teasing me (I'd ask her to bring me the ball and she'd bring me something else with a grin on her face and laughing, laughing, laughing!) Mary was so encouraged. Mary also brought a boom box so we could do a freeze dance to "stop/go". Raquel didn't dance but figured out how to push the stop & play button on her boom box and also eject the cd! It was too cute. She also said, "Where is it?" when looking for the ball, and Mary commented that she has a lot more vocabulary than she's using. What an encouraging day!

First Manual Adjustment

Today Raquel had her first manual adjustment from Dr. David. Dr. D is our family chiropractor that I've been going to for probably 10 years and my husband has gone to for probably 20+ years. There's no one quite like Dr. David - and he is the only man besides Mike that is allowed to touch me! He has helped not only with Mike's back, but with my carpal tunnel, and Gabby's ear infections (pediatrician wanted her to have tubes put in but she hasn't had ONE ear infection since being under Dr. D's care). I've seen him throughout my pregnancies and he's treated both girls since they were born. Whenever a pediatrician makes any kind of recommendation regarding the girls, my standard response is: "Let me check with our chiropractor." If he's in agreement with what they are saying, I do it. If not, my faith lies in Dr. David. He's never steered us wrong - and he's worked with us on more things than I can keep track of these days. We love Dr. D!! :-)

Because of everything going on with Raquel right now, especially all the sensory issues, I've been wanting him to check her out. Today he could tell she was off and adjusted her neck manually instead of using the "clicker", as Gabby refers to it. She was a little unsure at first but when he was done she was all smiles. He recommended that we start giving her flax oil for calming, to reduce the amount of television she watches, and wants to see her again next weekend. He also said he'd pull some info for us regarding Austism, although he's not convinced this is what is going on. I'm really happy he is involved and wish I would have brought her to him once therapy started so he knew what was happening for us. Today I have a sense of relief after seeing him.

The Fitness Ball

One of the items Karin asked me to pick up before our next session was one of those bouncy fitness balls. She wants me to start using it on Raquel to help tone down (hopefully) some of her sensory processing issues.

Yesterday when she arrived, Raquel seemed happy to see her - even though she kept coming back to me for assurance at first. Karin immediately went for the fitness ball. She sat Raquel on it and bounced her up and down for about 30 seconds (she sang the ABC song - so a long as that takes to do). Raquel LOVED the thing. She laughed and laughed and laughed! Karin followed the ball with deep joint compressions. None of us could believe what a difference it made in Raquel's temperament. This morning didn't start out so well and I was a little concerned about how the OT was going to go. This simple thing seemed to calm her significantly, and make her a lot more focused. She would get frustrated at times, but the entire session was done with a smile on her face - even when frustrated. She would get up and take a "break" but come right back. Karin showed me certain ways to hold her arm to help with the hand-over-hand techniques and overall just gave me some fantastic input and ideas to make the little, annoying things I've been dealing with, much easier. She also wants me to do the fitness ball routine followed by the joint compressions 3 times a day and note the changes.

She overlapped briefly today with Wendy and they worked great together. Karin sat back and watched - saying that Wendy knew her best and wanted to observe their play therapy. Wendy commented on how calm Raquel appeared and was very encouraged by the fitness ball. She also showed me some infant massage techniques that I could use after her bath at night.

All in all - a good day. This picture speaks volumes!

The Pillow Thing

After yesterday's OT with Karin, it was pretty apparent that OT is going to be a lot like the PT: putting a bunch of demands on Raquel, which will bring out the behavior. Yesterday was a mild version of the previous Monday when Trish was here.

It wasn't too long into the OT session that Raquel became really frustrated. Karin was trying to help her do a puzzle hand-over-hand and she just couldn't get it on her own and started throwing pieces. Typically the throwing of toys during the other therapies is her signal to say she is all done with the activity. Well, in OT & PT, they kind of have to hold their ground with her because she needs to "work". They let her take breaks and wander off into other rooms of the house, but need to redirect her back relatively quickly so they can continue the session. Raquel started a tantrum, and Karin and Elizabeth did really well trying to calm her.

Then she started throwing herself back - and hard. I was doing my absolute best to ignore the behavior, because acknowledging it reinforces it, but after about the fifth or sixth time, I asked Elizabeth how to make her stop. She said, "Grab a pillow." Gabby quickly fetched one, and I watched her put the pillow behind Raquel over and over again so when she'd throw back, she'd land on the pillow. She did not make eye contact with her, and did not say one single word to her. This started in the living room and went down the hallway, into Raquel's room, and then Gabby's room. You had to move quick because sometimes you'd think she'd go one way and then she'd change directions. Finally, after attempting to throw herself into Gabby's wooden easel to no avail, she got up and walked back in to the living room and Karin was able to continue her session. My assignment from Elizabeth yesterday: follow Raquel throughout the house with the pillow.

Last night, she started up again shortly after Mike got home. He didn't know what to make of the whole pillow thing but stayed in the living room to watch how I was handling it. He is so emotional when it comes to his girls (all three of us) and he completely feels our pain. Unfortunately, this isn't a good thing when it comes to her therapy because she feeds off of it. A good part of my time with Elizabeth is spent learning how to sort of "detach" myself from the situation so, in this particular instance, if she misses the pillow once, I'm okay with it.

Why does she do it, you ask? Karin was trying to explain it to me yesterday but I wasn't digesting everything she was saying so I'll get more info on Thursday when she's here. I do know that it is a sensory processing condition and behavior issues occur when there is too much or too little input. Throwing herself back is sort of her way of oddly calming herself, as weird as that sounds. I kinda shocks her body and releases energy I guess. Certain things can trigger it with Raquel - such as frustration from the therapy - or it can be random things like the start cycle of the dishwasher, a running faucet, separation anxiety, etc. etc. She just has certain sensitivities. This is what makes her so difficult right now - you just don't know when something is going to set her off. For instance, Trader Joe's this morning. I made sure she was fed, changed, had juice, etc. She goes with me there every week so it is a familar place to her. She was fine until check out, and then the hitting, crying, hair pulling started. Nothing could calm her. The only thing I can think of is that she was startled by people entering the store (we were at the register by the front door). Once I got her to the car, she was her happy little self. It's frustrating because we certainly don't want to do something that will trigger her and at the same time, she is not able to tell us what's wrong.

I also heard from Regional today. There was a change in who is handling my file and this new guy wants to come meet with me next Tuesday. I asked him about the Autism screening and he said he'd check on it and let me know. He said it would most likely be a month before she could be screened. Sounds like the paperwork is just beginning.

A Change of Events

Remember earlier how I wrote that the Autism screening was probably ruled out? Well, it was ruled in this morning. Once Elizabeth arrived and observed/played with Raquel, she told me that she would recommend the screening at the end of the month. I told her to do it now - why wait? - and she made the call. I'm hoping to hear from the Regional Center within the next day or two to schedule the screening. And you know how I feel about the Regional Center...

Then I cried. As a pregnant Mom, you do everything right to make sure your baby is fine. Elizabeth kept assuring me that this isn't my fault, that I did nothing wrong. I still struggle with the shots given to her at the 18-month check-up. Could this have triggered something? I just don't know but I'm reading a lot about it and it is a strong possibility. I did notice a change in her around that time.

Today Elizabeth came at 9am. Raquel greeted her with a big smile and then Elizabeth started therapy. Her therapy is different than the others because she deals with the behavior aspect and tries to make Raquel slightly out of her comfort zone to show me how to handle the behavior. Again, Elizabeth ROCKS.

The new occupational therapist came today and overlapped with Elizabeth. Her name is Karin (Kar-rhen) and I was very hesitant about a new OT because I absolutely LOVED Becky. Let me tell you that Karin had some big shoes to fill and she totally filled them. She gave me some great input and Raquel took to her immediately. Elizabeth told her that she submitted the info for the

Autism screen, and Karin said, "Oh, because of this and this and this?" and brought stuff to my attention that I never noticed. Sigh...

Mary came at her regular time for speech, but today Raquel didn't really want to participate much and wasn't very vocal. It was actually the quietest I've ever seen her. She played well, just didn't want a whole lot of new stuff. Mary is still so encouraged by her and brought me a book to read about bringing out communication.

The truth of the matter is this: Raquel is extremely difficult. She goes into serious tantrums without warning and if you aren't prepared to deal with them (like I'm being trained to) then serious harm can happen to her. The last thing we need right now is a concussion. Elizabeth has recommended that she not be alone with anyone if Mike and I aren't present - atleast until the Autistic Screening is done - because of possible harm. I haven't even mentioned the pillow scene today...

The Big Sister

I mentioned on an earlier post how blessed we are that Gabby is so patient and understanding with Raquel. It makes me sad that she is not able to play with her sister in a normal way just yet and that Raquel often leaves her in tears due to the scratching and hair pulling. Gabby never asks me what is wrong with her, how come there are so many people coming to the house to "play" with her, or why she can't do the things that her 2 year old cousin can do. Instead, she just takes it all in stride and could not be more proud. She loves the fact that since I have taken Raquel out of daycare, she is with us when I take Gabby to school and pick her up. She has made sure that all of her friends have met Raquel, and always tells them that she is "the best little sister there is" and that she is "REALLY special."

Because of her patience, it is very easy to forget that Gabby is effected by all of this as well. Raquel often demands a tremendous amount of my time, leaving less of me for Gabby. We do try to do "date night" once every couple months where she and I can go to dinner and the movies alone (Horton Hears A Who is really good, by the way.) But it is the one-on-one time periodically throughout the day that I am promising myself to work on - because this little six year old deserves it.

Therapy Done for the Week

I hate to say it this way, but when Wendy walked out our door today at 1pm, I was relieved to know that the therapy this week had come to an end. Don't get me wrong - I adore Wendy and she is fantastic with both the girls. It is just truly exhausting having all these people come in and out of the house sometimes. I never lose track of why they are here, but sometimes it's kind of like when you have people staying at your house for the weekend. It's just nice to get things back to normal - even if only briefly.

Today I took Raqi for her vision exam at the Regional Center. This was just a routine exam at my request. Since I've worn corrective lenses since age 11, and am technically legally blind without them, I'm always concerned about my girls having the same problem. I have to say that I was pretty much disappointed with how the exam was handled by Regional. We were guided to this room and I was instructed to sit down with Raquel on my lap. I could barely put my purse down on the table next to us, when they turned the lights completely out and started to snap pictures. I was startled and remarked that I was seeing spots. The lady replied, "Oh, I should have told you to look the other way." I was irritated because if I, a grown woman, was startled by it, what must be going through my little one's mind. Needless to say, she was not that cooperative and the lady made many, many, MANY unsuccessful attempts to get the pictures she needed. She didn't even have any toys to distract her. Finally, I told them we'd had enough and although they felt she had no vision problems, could not pass her because they could only capture one eye dilated and they needed both. They said she could be retested in 6 months.

When we were leaving the room, they mentioned that a pediatric dentist was also on call that could do a check-up. Since Raquel was already irritated, I went for it. The dentist was really great with her and said she has a beautiful set of teeth. Both girls left with new Shamu toothbrushes and toothpaste. When we left the building, we passed through a packed lobby. We were the first appointment of the morning. I understand that Regional deals with many cases on a regular basis, but I think that they are losing a bit of sensitivity because of the numbers involved, and that is really sad.

Wendy came at her usual 12pm. She had a great session with Raquel and remarked at how well she is progressing. Here are some of the weekly assignments we've been given:

Behavior: Ah, where to begin.
Physical: Walk her on unsteady surfaces such as sand, grass, pillows, etc. to continue building confidence. Encourage climbing by having her push off on my legs when I'm sitting on the floor.
Speech: Continue repeating words we think she is saying in conversation. Play "Who am I?" with pictures (Mary took pictures of me, Gabby, Raquel & Mary and we have her choose pictures by name). Work on throwing balls in to one big container such as a laundry basket. Continue the "I got it!" and "Look!" games.
Wendy: Do handstands & rolls, playdough (carefully - just mostly squishing), and do the "Up & Down" games.
Occupational (per Elizabeth): Continue the hand over hand techniques to work on fine motor skills. She also recommended that Mike set aside one toy, such as the Piggy Bank, that only he can work on with her daily.

Morning Sessions, Not So Hot...

It all started around 8:45am when Elizabeth showed up at her new time for BT. Raquel wasn't very cooperative - appeared very tired and easily aggitated. I mentioned how we were at the beach all day Sunday and she thought it was just going to be a somewhat "off" day for her because she had such a big day at the beach. Elizabeth continued to work with her for the next 45 minutes until Tricia showed up to do the physical. PT is not the fun stuff - it's demanding on Raquel and doesn't involve a bunch of cool toys like she's used to dealing with with everyone else. She is definitely out of her comfort zone and needs to constantly be redirected back to the therapy, which is why Elizabeth was overlapping sessions today.

The session started out very quickly and I have to say that I had this sick feeling right after we started that something just wasn't going to be okay. Last time, Trish was working with her on climbing so I wanted to show her how she's able to climb on to the couch unassisted now by using her little mattress as sort of a step (our couch is a little higher). She immediately moved the mattress away from the couch and wanted her to do it from the floor, saying that she's tall enough now. This is when things just started to spiral downhill. After a few more attempts at other physical challenges, I witnessed the most horrific "tantrum" that I've ever seen her go through. Not only was she hitting, scratching, and pulling hair towards me, she went after both therapists. Elizabeth handled it really well and even showed me a couple new ways to restrain her without making her feel like she is being restrained. I learned a lot from her being able to stay 100% calm but I could tell Trish was shocked by what was occuring. The only thing I got out of the entire PT session was to have her start walking on unstable surfaces - like sand at the beach, on air mattresses, etc. Elizabeth was determined to have her calm before Trish had to leave, but nothing would work to redirect her - not music, our dog, NOTHING. She was a little calmer when Trish left, but it wasn't until after she left that I was able to completely calm her in our rocking chair. She fell asleep in my arms out of pure exhaustion and slept for about 20 minutes. When she woke, although tired, she was very cooperative and Elizabeth was able to continue on with her session. She even cried a little when Elizabeth had to leave.

The whole thing was very disturbing to watch. Looking back, I should have stepped in sooner to prevent it from escalating, but at the same time, it was an awkward situation for me - these are the people that are supposed to be helping me learn how to deal with my daughter. But, when I had that feeling, I should have done something.

The good news: speech went really well. I almost cancelled it because of the morning ordeal, but she had a good lunch and her usual nap so I thought I should at least try. Mary is very encouraged by Raquel's continued word approximations and is convinced that she has more vocabulary than she is using. At one point, she rolled back and bumped her head on a toy. She cried and came to me and said, "I hit my head" while rubbing the spot she bumped. Mary was very excited to hear that and is encouraging us to listen for more words and to repeat them back to her in conversation so she will begin to add them to her regular vocabulary.

The other good news: I heard from the new occupational therapist and she starts next Monday.

Beach Pictures

Even though I had a million things to do around the house and Mike still wasn't feeling particularly well, we decided to pack it up and head to the beach yesterday. We only planned on staying for a little while, but some of my nieces & nephews ended up meeting us down there and we made a day out of it. Raquel did great! She loves being outside, and I think the ocean sound was calming for her. She even managed to take an 1 1/2 hour nap!

What a Difference a Day Makes!

I have absolutely NO IDEA what changed between yesterday and today. Today I had the most wonderful time with Raquel - no tantrums (maybe one or two but extremely mild). She even went to work with me so I was able to sit in on our brief production meeting. I miss being at work - a lot.

Last night, after telling Mike about my day, he gave me some really great advice. Mike is the best when it comes to redirecting Raquel during her difficult times - just by changing the scenery, playing music, bringing her outside or to see our dog, etc. Raquel is definitely "Daddy's Girl". He has a game plan when it comes to her outbursts. I'm learning a lot from that and am working on developing my own.

Not the Best of Days

Today was pretty difficult to say the least. Raquel was in rare form behavior wise. The hitting, scratching, hair pulling was pretty much unbearable. If that wasn't enough, she was constantly crying. I kept hearing Elizabeth's voice in my head saying, "Behavior is communication - she's trying to tell you something." but today was really hit or miss with her. The only thing that seemed to help was walking and car rides - and I certainly can't spend all day doing that.

Wendy came at lunch, as she does every Thursday. She is the infant coordinator, the one that does play therapy and tracks her progress. I mentioned to her that I wasn't happy not hearing from the new occupational therapist, and she called the program manager immediately and asked her to get right on it. It's been 3 weeks with no OT, and she wasn't pleased with that. Raquel did really well with Wendy - even whined a bit when she had to go. Wendy is the one that brings the really cool stuff. She was somewhat in agreement with Elizabeth & Mary regarding the autism, however, she said the screening might be a good idea for determining what type of spectrum disorder she may have. She said she'd discuss everything with them towards the end of the month. In the meantime, she is having a vision test done next Thursday. I'm told that it is a very simple procedure - that she'll be sitting on my lap the whole time and they take pictures of her eyes. Right after that, I'll be able to meet with the doctor to see what his findings are.

Another reason Elizabeth is my favorite: She never minds when I call her - and I call her a lot and usually in tears, like this afternoon for instance. She could hear Raquel carrying on in the background, and she kept reminding me that I can do this, that I will get through this, and that I'm a great mom. When I replied, "If I was a great mom, I'd know what she wanted.", she said to me, "No, most mom's would have given up by now. That's why I know you are a great mom." By this she is not implying that I am "Super Mom". What she meant was that I have taken Raquel out of full-time daycare for one month (at their suggestion to accommodate therapy), that I have taken a cut in my salary because I cannot be there full-time, and it would have been much easier to just go back to how things were. That, of course, didn't help with the crying but overall it did help the outcome. After our 30 minute conversation, I was much calmer, much more focused, and able to start trying to piece together what Raquel wanted. I never was able to figure it out. Hopefully tomorrow will be a better day.

My Husband

I failed to mention my husband of ten+ years in my previous posts. I don't want to leave him out, since he is just as huge of a part of this . Although I am the one primarily dealing with the doctors and therapists, he is the one that unfortunately deals with a stressed out wife most of the time. But he is a real trooper. For instance, this is just what happened during his lunch hour:

Mike has been very sick for over a week with a respiratory infection, ear infection, sinus infection, etc. He came home for lunch today (as he usually does) hoping to get some food and rest before going back to bodywork some cars this afternoon. A few minutes after he gets home, I arrive with Raquel. She gets really fussy and we don't know what she wants. He says she looks tired so I attempt to get her to sleep. He, noticing that I'm not getting anywhere, inhales his food and takes her in the other room to get her to sleep. Twenty minutes later, he comes back out with her wide awake, and then he had to leave. So much for a peaceful lunch - but he just wanted to give me the only 20 minutes that he had. Thank you, Mike. I really appreciate all that you do and try to do for me & the girls. You are the best & we love you.

My Girls!

Sorry but my blog was is some desperate need of pictures so here are a couple of my girls!

Another Day of Therapy

Yesterday wasn't really our typical day of therapy. We didn't have physical due to a scheduling problem. I was sort of relieved about it because I haven't been working with her going up and down the step stool like I should have been doing. I am given so many assignments each week, I sometimes need to pick and choose which ones I think are the most important. Since Raquel is walking more and more - and now starting to run! - PT was my last priority this week. Sorry Trish. :-(

We had our two hour behavior therapy this morning as usual. This is with Elizabeth and she is my favorite. Every week I ask her if she wants keys to the house so she can just come and go as she pleases. Elizabeth has a 2 year old and 6 year old just like I do and I personally feel that she has done the most so far if I evaluate Raquel's progress. When we first started the therapy program, Raquel was extremely difficult. She would hit, scratch, pull hair, throw anything put in front of her. She would have tantrums where she would throw herself backwards and hit her head. These days I am pleased to have a much calmer daughter. It's still a work in progress, don't get me wrong, but atleast now I am able to sense when she is getting frustrated.

Yesterday Elizabeth showed up not feeling particularly well so she didn't bring her usual bag of goods (toys) to play with. She spent a good portion of our session watching Raquel play and making observations. Raquel is doing something called "stemming" where she walks around and sort of twirls her hands. This is one of the flags of autism, but this alone is not enough to request an autism screening. Elizabeth has requested that I give her through the month of April for further evaluations - along with meetings with her speech therapist & infant coordinator - and the 3 of them will jointly make a decision whether or not she needs to be referred for the screening. Right now, it's not looking like she will need this. Elizabeth also introduced "social stories" to help with anxiety. She also worked a great deal with Gabby. With Gabby you ask? Yes. When I met with Elizabeth for the first time, she prepared me for the changes that would occur in Gabby now that Raquel would be the center of attention for 5 new people in our home. Yesterday she reinforced "inside vs outside" voices and also helped her learn how to properly ask for attention. When it comes to her sister, Gabby is showing enormous amounts of patience - more than I have at times - and this is truly a blessing because I know it is not always easy.

Around 4:30pm, Mary came for speech therapy. Speech and behavior therapy work hand in hand because once speech increases, the behavior decreases. Mary & Elizabeth overlap their sessions every couple weeks to make sure they are on the same page. Sometimes I'll be given instructions by Mary that Elizabeth will then overule, and then they need to come to some sort of agreement. It's interesting when that happens but fortunately it doesn't happen too much. Mary was very pleased with Raquel's progress yesterday and was in total agreement with Elizabeth regarding the autism screen. She seems to think that she is way to social to be autistic. She, too, did a few tests of her own, and for the second time of the day I was told, "I just don't see it." Since a good portion of their kids are autistic, I found this to be very encouraging. I'm hopeful that we will keep moving in such a positive direction.

A New Blog!

So here I am creating my very first blog. I decided to start this for a few reasons:

1) to keep track of my daughter's progress through therapy
2) to keep family and friends informed - often times it is easier to write it out than to repeat it to several people and
3) to help me keep my mind clear since I am realizing having a level head is one of the requirements to dealing with therapy

Thank you for listening to our journey.

So here is a little background:

I've got this beautiful 2 year old daughter named Raquel. She is a little behind developmentally. Although major medical causes have thankfully been ruled out, she is still receiving therapy to get her to where she needs to be. This consists of weekly behavior and speech therapy and physical and occupational therapy every other week. She also has an infant coordinator that comes once per week to do play therapy. It has been challenging having 5 people visit the house on a regular basis. I've had to adjust my work schedule to work from home 95% of the time. I've also had to take Raquel out of daycare to accommodate therapy. Therapy started at the beginning of March and she has made some definite progress, though she still has a way to go. More to come...