1 in 91

When I first started the autism journey two years ago, the statistics were that 1 in 150 kids were diagnosed with this condition. I thought that was pretty horrifying considering it used to be 1 in 10,000. Then I got my latest TACA (Talk About Curing Austim) Newsletter today and read the current stats: 1 in 91. Is it just me, or is that a pretty dramatic change for only 2 years?

I know the majority of pediatricians - including ours because I haven't found a DAN (Defeat Autism Now) doctor yet - deny that the immunizations have anything to do with causing autism. I personally feel they do and find it incoincidental that 99% of parents with autistic children noticed a change in their kids right around the 18-month mark, after the regularly scheduled MMR vaccination.

With the flu season already off to a really early and bad start, I've been going back and forth in my head about whether or not to give Raquel the H1N1 vaccine. In the TACA Newsletter today, there was a great article about this from Dr. Robert Sears. He explained the 4 vaccines, how they are given, the ingredients, how they are manufactured, etc. But then he said, "I do not recommend any more vaccines, including this one, for any child with autism" and went on to say that his biggest worry about the H1N1 vaccine is that it "requires two doses for kids 9 years and younger. When you add in the regular flu shot, that's 3 doses over a short time. There is no safety research that I know of that demonstrates the safety of 3 doses of a flu shot in one season. Plus, the swine flu product inserts very clearly state that there is NO safety or efficacy research yet."

That didn't give me a very warm feeling - especially considering I have a child with limited communication skills who can't explain any reactions/side effects she may be having. Raquel has a follow-up neurological appointment in mid-January, so I'll discuss this with Dr. Mower and get his input then.

I can't say enough about TACA and the amazing job they do. Check out their website at www.tacanow.org. If you are reading this, you more than likely know someone or a family affected by autism. Join TACA. Sign up for their newsletter. Educate yourself. Donate to the cause if you are able. Sponsor a family in need. Volunteer. Although Raquel is on the low end of the spectrum because of her sensory issues, she is still ON the spectrum. And I have promised myself to get more involved with TACA in 2010.

Okay, off my soap box...

Last Wednesday when I picked Raquel up from school, I overheard her teacher talking to another parent, saying that their kid was sick and shouldn't have been in school. A note came home in Raquel's backpack that day, reiterating the rules about how kids in the special ed class have lower immune systems and are not welcome when ill because another one can easily catch their sickness. Raquel woke up in the middle of the night with a fever. The next morning, the fever was lower but she was sneezing, coughing and had a runny nose - which has gotten progressively worse over the past few days. I am praying that she doesn't get a "hidden" sinus infection. I may be taking her to urgent care in the morning if there's not much improvement.

Hoping she's feeling better in the morning and that we can have a nice family day at home decorating for Christmas!

An End To A Very Long Week

I don't know what it was about this week but it sure seemed long and Friday didn't come soon enough. I am so looking forward to what will hopefully be a restful weekend. Next week is Thanksgiving Break so there's no school. I'm actually looking forward to that, too.

Raquel ended the week on pretty much a good note. The teacher is still challenged by her "attitude", but is making progress. I found out today that the majority of her behaviors occur when she doesn't want to participate in what the class is doing - or, primarily, wanting to stop before the activity is done. The teacher requires Raquel, as she should, to sit there until the activity ends, to stay attended to what the rest of the class is doing. And we're not dealing with a task being a long period of time. Raquel continues to want to do things when she wants, how she wants - PERIOD. I think the only way the teacher is going to get past that is to continue to hold her own.

Last year in the orthopedic class, Raqi could wander around and do what she wanted. If she through a fit, they would take her to the sensory room and she could play in the ball pit. Not the same thing going on here. Now it's about following rules and instructions.

Here's a couple (blurry) pictures of Raquel in her Thanksgiving hat they made at school today. She humored me and kept it on the entire way home. I loved looking at her in my rear view mirror when I had to stop at the red lights.

This week has brought back a bunch of ABA memories for me - when Raquel was seen every day for in-home therapy. Just today when I was picking her up, she started to get aggitated and I said, "Oh, knock it off Raquel. I'm talking to your teacher." She immediately stopped and went off to the other kids. Another parent that was picking up her child said she wished she could do that, but she's just a softy. I told her it was because of the ABA - they taught me how to learn when Raquel was just "working it", and to not reinforce that behavior. I am truly grateful for my ABA Team and I miss them very much.

I've posted a lot before about how music really helps soothe Raquel - especially Jason Mraz and what I call her song - "I'm Yours." Almost a year after the in-home therapy has ended, I still get calls, emails, text messages from her former therapists saying for the most part, "I just heard her song on the radio! How's she doing?"

I have been very fortunate to watch Raqi's song played live many times and not once have I ever not thought of her - or the ABA therapy - when the song starts. It's amazing to see so many people sing every word and having such a good time about a happy song about love. And it's funny because no one would ever know why it's so special to me - what it's gotten us through in therapy and in life. I don't think anyone would believe it unless they have actually seen her reaction to it.

Here's how Raquel's song was played a couple days ago in Brazil - on one of Brazil's biggest talk/variety shows called Faustao, with an average viewing audience of 40 million people!! Sure wish I was at this one. Brazil knows how to put it on! Great job you guys!

"I Fought The Teacher and I Won!"

At least she won today. Her teacher was out sick most of last week and today was her first day back after nearly catching pneumonia. Let's just say that Raquel didn't take it easy on her. When Eva (her teacher) handed her over to me and I asked her as I do every day how she did, she gave me a look, paused, then said, "Great - as long as she was doing something she wanted to do when she wanted to do it." At that point, Raquel cracked up laughing and I asked her what was so funny. Eva replied: "She's saying, Mom, I fought the teacher and I won!" I really hope Eva had a restful lunch before starting her afternoon class. The aide did tell me that most of the kids seemed a bit out of sorts today - probably because of the weekend off.

I know I haven't posted for awhile and that most of you are assuming (or hoping) that things have been moving right along. They're moving - don't get me wrong - but not really in the direction I had hoped. Raquel continues to be her stubborn self and the teachers/aides continue to struggle with what works and what doesn't.

As a parent, this is one of the hardest positions to be in. Dealing with daily therapy in addition to the weekly ones provided me with a lot of tools I can use to handle Raquel. And now that she's just a number in the district, we're back to square one. No one around her knows the signs of her getting aggitated, or how to effectively redirect her. Last Friday when I picked her up, she was carrying on in the parking lot with the substitute teacher, who was really happy to see me.

By no means am I implying that this is an isolated situation geared towards me personally. This is just how the transition works. You go from dealing with all of these wonderful therapists in your home on a daily (and/or weekly) basis, showing you how to manage challenging situations, and then once your child turns three, you are expected to put them on the bus both directions and hope for the best. It's scary to think of all the information I would not have been privy to if I would have done just that. My personal opinion: the transition needs to take place months before their 3rd birthday so everyone is aware of a child's individual needs, teacher's questions can be answered by those that have worked with her and actually know her best, and that everyone can work together to find the most appropriate class placement. Maybe one day it will work that way.

This is pretty much the last opportunity for my district - and they know this. If this class is the best they have to offer, and we continue to take two steps forward and one step back, I'll need to bite the bullet and start over in another district. I will say that because they know that I am at the end of my rope, they are bending over backwards to make this work. Last week, the principal personally worked with Raquel for about an hour one day, and then when Eva got ill, the principal had the district psychologist come and work with her in the classroom to help the substitutes deal with any behaviors that may have occurred.

Last Friday we were supposed to have an IEP and put together a Behavior Support Plan (BSP), but that was cancelled because the teacher was sick. I'm still waiting for the reschedule date, but am feeling pretty good about it right now. This new panel of people I am fortunately dealing with seem to understand my concerns, and, even seem a bit irritated by how things have been handled thus far. I think that once they get my input for the BSP, things will flow a bit better. I am also planning on having my regular respite worker, Christy, attend class a couple times a week after the Thanksgiving break to show them what works for her when she's taking care of Raquel. I would go in a heartbeat but everyone tells me I'd be too distracting and that she needs to associate school with mom not being there. I understand their point.

The good news is that Raquel really seems to like going to school. Every morning when I ask if she's ready to go, she runs to the back door with a big smile on her face. Once we get there, she stops and greets her previous class, and then walks with her new class to their room without the slightest hesitation. With the exception of last week, she seems perfectly content when I pick her up, grinning from ear to ear when she first spots me at the fence waiting for her. And I think going to school every day is a great thing for her. She needs to get out of the house and be around other kids.

At home, Raquel continues to be a difficult piece of work to figure out. Sometimes I think she's just messing with me. The other day, she said, "What are you doing?" as plain as day, so much that I automatically answered her question before realizing who it came from. When I said, "Are you talking to Mommy?", she smiled and went back to what she was doing. She really does have a mind of her own. I wonder where she gets that from. :-)

Hoping she'll have a better report card tomorrow, but am still feeling optimistic and am pleased that she has a teacher who is up for a challenge.

Liking School - For The Most Part

Last week, Raquel started her new class at Rock Springs. I was pretty much a basket case the night before - not able to sleep and I kept doubting my decision to put her back in school.

What's the big deal about her being in school a few hours a day? Well, I am very protective of my girl(s) and the fact that Raquel cannot tell me about her day and what happened means that I need to have a great deal of trust and confidence in the people surrounding her. That's a tough one for me because I know how difficult she can be and how the slightest things can trigger behaviors. And I also know how simple behaviors can escalate into self-injuring ones if she's not redirected right away.

Mike came with me on her first day for moral support. That's what he said, anyway, but I really think he wanted to go to make sure I actually took her. :-) As soon as we got her out of the car, the bus driver spotted saw her and yelled, "Hey! Raqi!!" and Raquel cracked a big grin and started to laugh. It was very apparent that she knew exactly where she was. She then went over to the orthopedic class, who were waiting for their teacher to come get them, and they all seemed very happy to see Raquel and Raquel definitely recognized them.

The first day, I waited by the phone expecting her new teacher to call me to come get her. She never called. In fact, she hasn't called me once since she started back in school. She told me that she has promised herself not to call me and to, instead, work through the behaviors. Of course, there is a transition period and Raquel is beyond stubborn and wants to do things her way and when she wants to do them. But, her teacher is equally as stubborn and doesn't give in. And I think that is a really good thing. Raquel needs to learn that things can't always be on her terms. That just isn't how life works.

Raquel has now resumed all therapy in a school setting - speech, occupational, and physical therapy (they call it applied physical education now). I have not heard back from Rady Children's about scheduling speech sessions through our private insurance company but think this is still the only way I can honestly sit in front of Raquel's neurologist in January and say that she's had therapy. The new district speech therapist is very new - right out of college, actually - and has no experience working with kids who have special needs.

But, the cup continues to be half full. Raquel is talking more and more, tantrums are less frequent, and she's turning into such a beautiful little girl. I love her more than words can say. I am truly blessed to be her Mom.

Here are a couple of pictures from Halloween:

Gabby & her friend not wanting to pose for my pictures....

... until I told them they couldn't go to the carnival until they did...

... Raquel and her Dad....

... And me and my girl.

Raquel can be such a handful at times, and drains enormous amounts of my energy on a daily basis, but I never lose track of the importance of what I am doing and fighting for. And I refuse to give up. My Mom didn't raise a quitter and I know that she is really proud of me right now. But I'm sure she's telling everyone in Heaven that it's because of her I'm like this. :-)

The Dog Ate Her ... Shoe?

That's the only thing I can come up with at this point. I've searched high and low, inside and outside, under the couch, in the car - everywhere a little toddler size six shoe could possibly be but nothing, nada, zilch, zip.

So what's the big deal about a shoe? Well, a lot actually. Because of Raquel's low muscle tone, she is a very clumbsy walker. All the cute, clunky shoes - that I love and wear - don't work for her because she trips easily. She needs simple stuff. And simple is not always that easy.

For starters, like any shoe, it has to be comfortable. But Raquel can't tell me if her shoe hurts - and because of her sensory issues, she has a pretty high pain threshold - so I only find out if a shoe is not working by seeing blisters or sores on her feet after I've taken off a new pair. The shoe also has to be convenient, meaning velcro and not a bunch of laces because they constantly have to be put back on because she takes them off. The P.E. therapist prefers certain styles, and I've payed a pretty penny on Converse shoes, but those don't work for me on a daily basis. In fact, I would typically pack those in her backpack and tell the teacher to put them on for therapy. Again, I need to pick my battles here and fighting to put shoes on first thing in the morning is definitely not one of them.

I finally got the health form signed by the pediatrician stating that Raquel has nut allergies and needs to have the Epi-Pen at the school nurse's office. Why that took 4 days, no idea. Then her new teacher got sick and then had an IEP and I didn't feel comfortable putting her into her class with an unknown substitute. The teacher didn't like that idea either. So today was going to be her first day back to school ... until the missing shoe came in to play. By the time I was done searching, her class had already started, I was beyond irritated on top of not feeling well in the first place, and Mike just had to get to work.

By no means do I want you to think that my girl is shoe deprived. I would never allow that, being the shoe freak that I am. She has plenty - just ones that aren't suitable to wear to school in a new environment and walking around unfamiliar things. We prefer to have her barefoot to prevent her tripping and we introduce new shoes gradually, but this is not an option in class.

Tomorrow, she will start her new class - in an old pair that I'm not real happy about - and then I will continue to search for some new ones. It's always something, I guess...

A Very Special Wedding

One of the hardest things (for me) in dealing with a child who has special needs is finding enough time - and energy - to effectively parent Gabby. Even though she absolutely cherishes Raquel and probably wouldn't change a thing about her, I often feel that she gets the short end of the stick. I am always trying to think of ways to make her feel not only loved and appreciated, but also ways that she can shine on her own so things aren't "always about Raquel." (Yes, she does say that...)

A couple of months ago, Mike's cousin, Morgan, called and asked Gabby if she would be a flower girl in his upcoming wedding. Besides being honored that he thought of her to do this, I knew this was my golden opportunity to make her feel like a million bucks. Even though she likes to play in the dirt, Gabby is definitely all girl - it's all about the pretty dresses & shoes, hats & purses, glitter & make up, etc., etc. In fact, she can be too girly for me at times. But I promised myself that I would go overboard with the wedding experience and let her enjoy every moment.

I have to say that she definitely enjoyed it, but it wasn't exactly how I had planned. When I took her to David's Bridal to get fitted for her dress, she insisted that Raquel come with us. After not being able to convince her otherwise (over the course of several days, mind you), the three of us went. Gabby had more fun watching Raquel chase after herself in all the mirrors than she did getting pampered by the bridal staff. She cried when we left her at my in-laws to go to the rehearsal dinner because she wanted her to go with us, and she was very sad to leave her behind to go to the wedding because she wanted Raquel to watch her throw the rose petals. I can't tell you how many times she asked me, "How do you think Raquel is doing?" Even when out and having a good time, her thoughts always come back to Raquel. I think that is very sweet, and it also says a lot about their relationship.

It also made me realize something: I've been trying too hard to make Gabby feel like she has a "normal" life, if that makes any sense. This IS our normal life. Raquel IS her reality and by me trying to act like it should be different must be a bit confusing. Gabby knows Raquel is special in her own way and has certain limitations, but it doesn't change the fact that she's her little sister. And she loves her little sister more than anything. Instead of trying to shelter her from the situation, I've decided that I just need to acknowledge the little things more. For instance... She just handed me a note saying that I'm arrested and owe her $1,000. I asked her why she was arresting me and she said it was because I stole a pair of yellow shoes. I said, "Yellow?" and she said - "and they were the wrong size, Mom." LOL But she was beaming while "arresting" me and was happy to be the center of my attention, even if it was only for a short time.

The wedding was absolutely beautiful, and Gabby was definitely pampered. It started with getting her hair styled by Kelly at Kids Kuts - my very favorite place to take her. Kelly is awesome and makes it such a great experience (because she "just loves hair!").



I love watching Gabby's eyes get as big as silver dollars whenever she pulls out the hair glitter. She knew Gabby was getting ready for the wedding and made it extra special for her. Thank you, Kelly! Because of all the gel and goop you put in there, her hair didn't budge one bit and looked just like when we left you, all day, all night - and in the morning, too. :-)

Once we got to the winery for pictures hours before the ceremony, Gabby started to really get into the wedding party mode. She got dressed upstairs with the bride and bridesmaids, drank apple cider from champagne glasses, and was secluded from everyone with the rest of them 30 minutes prior to the big event. I didn't even see her at this point. But once the wedding started and Morgan stood on the platform in front of us, he called to me and said that Gabby was absolutely glowing. I think she redefined the word "glow." I was so proud of her for doing such a great job.







Thank you, Morgan, for giving Gabby such a special role in your wedding. We really appreciate you thinking of her. And thank you, Karin, for allowing her to be a part of the whole experience. It's something that she will cherish and remember always. We wish you much love and happiness in your new life together.





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SIDE NOTE: This morning, Mike & I met with the school district, teachers, and therapists. After 3 hours of discussion, we have agreed to have Raquel resume school at Rock Springs in the regular special education class - with walking and talking kids. Our new Special Ed Program Specialist seemed genuinely concerned about the district not providing services. She also was very understanding as to why I had made the decision to keep her out of school. Two weeks after she starts, we meet again to make adjustments and put together a behavior support plan (BSP). As soon as one form gets completed by her pediatrician, she can start. I'm thinking right now that will probably be Wednesday.

A Post From Mike's Cousin

My name is Sandy and I am Mike's cousin from Buffalo. I asked Nita if I could make an entry on her blog.

From the end of August into the second week in September, my boyfriend, Dennis and I went out West for a vacation. While we were there, we visited quite a bit with Mike, Nita and the girls. I had last seen Raqi when she was 3 months old. She was adorable then and is so much more now. She has a smile that will melt your heart. To be honest, I was leary about going as I didn't want to upset her or throw off her routine.

Well.....when we first pulled up, Mike was holding Raqi outside in the driveway and when she saw us she started bouncing up and down in his arms and clapping. I realized then that my worry was all for naught. Raqi came right to me and gave me lots of hugs and kisses. I would like to think she remembered back to when she was a baby and all the cuddle time the two of us had shared.





It took her a little while to get to where she would curl up with Dennis but she eventually did. We left that evening and went to Las Vegas. While we were there, Dennis won a HUGE ball for Raqi and Gabby. Needless to say, when he gave it to them they just loved it. It was big, bright and bouncy – perfect for Raqi.

We had many fun times during those two weeks even though we were there on and off – we took a cruise and Dennis had a Navy reunion as well, so we were in and out. ….Along with the good times, there were some bad ones, I will admit. I shed many tears watching that sweet little girl get so angry and upset as she was so frustrated because she was trying to communicate a thought or wish to no avail. She tries too hard to get across whatever is on her mind, and when she can't - unfortunately she lets people know, as we all do at times.

But even when she is very angry or frustrated, I see her look at the person she is trying to communicate with: Mike, Nita, Gabby and even myself and Dennis, with true love and tenderness in her expression. Raqi stares you right in the eyes with such conviction and intensity she seems to be apologizing for her temper. She doesn't mean to hurt anyone at all. She is looking to all of us for help and understanding. We have to relay her message for her until she can.

I will admit with her limited vocal skills she can be a handful. I don't know how Mike and especially Nita do it day in and day out. But they are absolutely wonderful with her. Nita is never tiring – juggling work, a home (we all know how time consuming that is in and of itself), making sure Gabby Girl gets her own time, and trying to fight the system to get the help for that sweet innocent child. You have my sincerest admiration and respect, Sweetie. I don't think I would have the strength to do what you do day in and day out. In fact, I know I wouldn't. You are a very special Mom.

You all keep up with the amazing job you are doing. Mike - be strong and keep loving your girls. They need you. Gabby Girl – stay sweet and be the best big sister you can. Raqi – hang in there, baby. You will get the help you need. Mommy and Daddy will see to it. Nita – Don't give up. You keep fighting the system until you get someone to help you. You are her voice; speak it loud and strong. If you need help call me. I'll come and help!!!

You are my Heroes and I love you all very much.

Speech Evaluation Complete

I've said it before and I'm sure I'll say it again - when you are dealing with Rady Children's Hospital, you are dealing with a bunch of great people.

This morning, Raquel had her initial speech evaluation at their Oceanside Speech & Language Center. I didn't know what to expect, and was a bit concerned because Raquel woke up at 5am, but as soon as I was greeted by Danielle, the speech therapist/evaluator, I knew I was in wonderful hands.

Although she has only been at Rady's for a little over a month, she has worked in a similar position in Los Angeles for, I think, eight years, and specializes in treating preschool aged children, primarily dealing with Autism and Apraxia. She's also trained therapists for the ABA Program, so she was extremely familiar with the therapy structure Raquel had, and was able to provide me with her observations, recommendations, and feedback.

The session didn't particularly start out that great. She took us into a tiny room - again, Raquel doesn't like being confined - and it really wasn't a kid friendly place. Toys were definitely present, but Raquel wanted to play with the phone, the computer, the desk drawer, her files - everything she wasn't supposed to get into. This eventually turned into a game with her: she'd reach for something she knew she shouldn't have and look at me with a big smile on her face. Danielle commented on how her teasing nature was very age appropriate, but then moved us to a different room across the hall that didn't have all the distractions.

Once moved, Danielle tried repeatedly to engage Raquel in some play activities, but Raquel kept coming back to me. Once I told Danielle that it takes awhile for Raquel to warm up to someone new, and that too many toys being out are over-stimulating to her, she decided it would be best to observe her interacting with me instead. She watched how Raquel responded to me reading a book to her. I'd tell her to turn the page, and she would, and she really focused on the pictures and then would look up and make eye contact at me, making the activity a shared one. She also started to talk some, and once she got up and started moving around, the speech increased. Danielle said that this signifies that she is at a specific level of speech development - when gross motor and speech are linked together. This typically happens at the year to year and a half age range.

After being there well over an hour and a half, Raquel became tired and obviously wanted to leave. No tantrum or anything, she was just ready to go. As soon as I stood up and grabbed my purse, she got a big smile on her face, high fiving Danielle as we walked out the door.

Since Danielle treats Autistic kids primarily, I had to ask the question that I've asked all the others: "Do you see Raquel as being Autistic?" Without slight hesitation, she said she didn't, that she understood she was given the diagnosis of Mild Pervasive Developmental Disorder, but feels that was primarily due to her sensory issues. Even if PDD is her true diagnosis, she said that it is on the lowest end of the Austistic Spectrum. Her opinion - at this point - is that this is a seizure triggered neurological condition. And she did stress the importance of the fact that their job is not to make a diagnosis, but to treat the condition. We are also going to be resuming the PECS (Picture Exchange Communication System).

What's next? Danielle has to put together a report and figure out a game plan. She did tell me that she didn't feel a longer session would be to Raquel's benefit at this point because of her short attention span. I should hear back from Rady Children's in a couple weeks to work out the scheduling. I am hoping Danielle will be able to continue treating her, but feel very confident that if it's someone new, they will be highly qualified.

A Nice Family Day

I absolutely love Sundays - especially when I am able to have a nice, quiet day with the family. Mike has been working every Saturday, so it's really nice when the four of us can hang out, be together and catch up on the simple things.

This morning, Mike surprised me by packing breakfast and a blanket, and taking us to the park for an early picnic. It was a beautiful day and we had so much fun. The girls played - and posed - on the swings...







... went on the slides...





... until Raquel didn't want to slide anymore...



... posed for me in the tunnel...

And I took some cute pictures of the girls with dad.





One side note... Raquel will have a speech session/evaluation tomorrow at Rady Children's in Oceanside. I really don't know what to expect but am told that this particular therapist - although very new to the group - specializes in preschool aged children. I'm assuming this means she'll have toys to entice Raquel with. Mike and I have been noticing more speech coming out of Raquel, so I'm very excited to finally get her back in regular sessions. We see her neurologist again in January and I am going to be pushing for weekly sessions until then. Wish us luck. I'll take pictures if they let me. It's really fascinating to watch the therapy process and see how they are able to extract language from her. But I still wish we had Mary for speech therapy again...



... but I promise to go to tomorrow's session with an open mind. :-)

Respite Care? What Respite Care?

Just when I think I've found another replacement for another replacement, everything backfires on me. What a frustrating few (?) weeks it has been.

My regular respite worker has taken an indefinite leave of absence due to family illness. I completely understand that and wish her the absolute best. When the agency called to notify me of this many, MANY weeks ago, they stressed the importance of finding someone extremely reliable and who was able to deal with a child who has special needs outside of the "austistic" spectrum.

All of the replacements that have shown up appear to be very nice and able to effectively deal with Raquel for 4 hours once per week. At least that is what the agency tells me. All have been very polite and obviously "kid" people, and Raquel has appeared to take to each of them - probably because she's used to her previous therapists coming and going on a daily basis. Each of them seem fine when leaving, telling me how great Raquel is/was during their shift, and then I get the call from the agency saying they won't be back.

Take today for example. I came home to find a sleeping Raquel and what appeared to be a very content respite worker. She took her for a walk, went on the swing, got her to sleep and all was well. She said she wasn't a problem at all, didn't have any issues, etc. and looked forward to seeing us again on Wednesday (I get to have two days this week because I haven't had care for so long). Then I get the call from the agency stating that it's not going to work, that Raquel was too difficult, and that they need to find a better match. I was very surprised - especially considering I asked about her behavior issues and she said she was not a problem. I asked the agency specifically what she found was so difficult and was told that at one point Raquel became aggitated and began kicking her feet on the ground. I know I've been dealing with Raquel's behaviors for a long time, but this is Sensory 101 here. If you are told you are going to be watching a child with sensory issues, you really should know how to redirect the behavior.

I then asked about the other "replacements" and was told we were too far away, the day/time interferes with their school schedules, etc. etc. etc. SO FRUSTRATING. Again, back to square one. And I really don't like having different people in the house all the time. Typically when a new person starts, I make sure Gabby is home to help - and so she can tell me how it really went. But, I have to pay for them watching Gabby so that takes out of the whole respite being a relief. Plus, Gabby is back in school so this is no longer an option.

I also spoke with Regional today. They called to let me know that due to budget cuts, I no longer have my Educational Consultant, Bev, who was a tremendous help to me during the transition from therapy to the school district system.

And speaking of the school district, they still have not returned my call from the first week of August when I asked for a meeting to discuss Raquel's placement prior to the start of school. Of course, I'm not surprised.

Daycare down the street didn't start either since I don't have a respite worker that can attend class with her. Or one that effectively knows how to redirect her for that matter. The whole point of one going with her was to show them how to handle the behaviors, but until I can find someone who can deal with them on their own, there is no sense for me to waste not only money on daycare costs but also use up a day of much needed respite care.

Feeling pretty beat up today, but on a very positive note, had a great first teacher conference with Gabby this morning. Got some great input and advice, and Gabby really made me proud showing off all she's learned over the first 5 weeks of school!

Looking forward to a relaxing night with the family - and promising myself to take things one day at a time.

Starting Daycare

Today, I coincidentally ran into Gabby's old daycare provider at the grocery store. She asked about Raquel (who was with me) and I told her about the struggles I've been having with the school district and asked her if she had any part-time openings. She does and Raquel will be starting her daycare on September 16th. We are taking baby steps at this and she will be going for only 4 hours, once per week until we feel she is ready to add more days. She will also be going with my respite worker at first so she can show them appropriate ways to deal with her special needs. The reason I am having my respite worker do this instead of going myself is because we all feel that I would be too big of a distraction. And attending daycare and school is about being around other kids instead of Mom.

It's definitely a start - and I'm really happy about it. Plus, the daycare is walking distance from our house.

As far as therapy goes, OT is still in the works. Karin is approved under my insurance but for PPOs not HMOs so I'm still dealing with getting that worked out. But Raquel has her first speech session on the 9th, one week from today, with a therapist named Danielle who specializes in preschool kids.

Such a slow process with all of this but slow and steady wins the race, right? That's what I'm going with at least. And we WILL win this race.

Back To School?

Deciding what to do about Raquel's school situation has been a real challenge for me over the summer. I've gone back and forth in my head time and again. It's been one of those things that you wake up at 2am thinking about and can't go back to sleep.

Last week, after having a heartfelt conversation with Gabby about Raquel, I have finally come to a decision: she will not be attending the orthopedic class at Rock Springs - the only class that our school district seems to feel is available to her. And Gabby was definitely the deciding factor. She has such a special bond with her sister and although they don't have a "typical" sister-sister relationship because of Raquel's current limitations, they have a very real connection with each other and I love watching them interact - even when fighting. I keep reminding Gabby about how paybacks work, and Raquel continues to grow and is quickly approaching Gabby's height so I know what's coming...

I was told by my original behavior therapist, Elizabeth, very early on in this journey, that Gabby's perception of things is a lot more realistic to what Raquel's perception is vs. what I think it is. I have never forgotten that and it was one of the greatest pieces of advice I have been given throughout all of this. Whenever Gabby tells me what she thinks her sister needs, wants, or is thinking, I don't take it lightly.

The other day, I sat Gabby down in a pretty adult manner, and told her that I needed her help deciding what to do with Raquel and her school. I presented the options (the ortho class, finding a daycare, keeping her home, etc.) and asked for her input. She listened intently and became very serious, really understanding the importance of this. When I asked her what she thought I should do, she said, "How about this, Mom? Let's keep her out until January when she turns 4." I wasn't expecting that response at all and didn't know where it was coming from, so I asked her to continue. And a lot of really cool stuff came out that I wasn't thinking about. She said that she can't go back to the ortho class, that not only does the neurologist not recommend it, but she reminded me that since she has been out of school over the course of the summer, Raquel no longer makes the moaning sounds that she picked up from the other kids, and she no longer does certain behaviors that were, again, picked up from the class. That's a very valid point. I always looked at the cup as being half full with the sounds/behaviors and was glad that she had the ability to "model" after other kids. But Gabby is 100% correct - she no longer does these things, and now I wonder what she WOULD be doing if she was around typically developing children.

Gabby also told me that we keep noticing more and more improvements with her being on the medication, that she's not going to have a consistent school schedule anyways because the holidays are coming up (YIKES!) and she'll have a lot of time off, and it will be January very soon. She said that I need to keep her on the medication, get speech therapy going as soon as possible because Dr. Mower says that is really important right now, and then see what he says when we see him again in early January. Gabby thinks that if we continue to work hard with Raquel, she will be ready for a more suitable program when she turns 4.

That was a lot to take in from a 7-year old, but she's right. She doesn't belong in that class and it's not fair to her to put her there just because I want her around other kids, or because I need a break. I need to be selective about the kids she's around for her own benefit. I need to think about what is best for Raquel instead of what is best for everyone else.

So, I've decided that she won't start on Monday as planned. And I'm getting closer to starting up therapy. Since her pediatrician wouldn't sign the authorization form and it had to come from a specialist, her file needs to be re-evaluated by Rady Children's to verify services are in need. More and more paperwork, but I'm getting pretty good at staying on top of it and getting my calls returned. Karin has already agreed to resume occupational therapy and since she has treated Raquel before, does not need to do any evaluations, so once I get the go-ahead from my insurance company, it should be a pretty easy process. My goal for next week is finding a speech therapist that specializes in preschool children and getting the process going - PERIOD. A lot of wasted time this summer that I wasn't planning on, but that's how it goes. I'm just doing the best I can and taking it one day at a time, and not looking back with regrets.

Neurological Follow-Up Complete

This morning Raquel saw Dr. Mower for her neurological follow-up appointment. He continues to be optimistic about how things are progressing. He was a little irritated about the lack of therapy she has been receiving by the school district and gave me a Doctor's Orders note to give them which basically states that "Raquel REQUIRES speech and OT therapy as mandated by her IEP" and to provide for these services. He also told us that this is a legal matter, that they are obligated to provide therapy and can be taken to court for failing to do so.

The reason for his displeasure with her not receiving therapy is that he was not able to effectively track her progress. Depakote and speech therapy work hand in hand and he wanted to observe Raquel for 6 months on the medication with regular therapy to see if he feels it is working. If after the 6 months she continues to be non-verbal, he'd begin to start modifying her treatment.

I also gave him the phone number to my HMO Group so he can sign the paperwork authorizing services outside of the district setting. I want to get these going as soon as possible. And my reality about the district therapy is this: how will I ever know it's being done? Raquel can't tell me, I'm not allowed to be there when it takes place, and the only reason I even found out it wasn't being done in the first place was by drilling the teachers and bus drivers and asking tons and tons of questions. By doing therapy through my own private insurance, I will be allowed to screen them and find one that I feel is a good match. Speech therapy right now is critical and we need to have a therapist who is up for a challenge and will work at developing a special connection with Raquel and not just showing up for "work". It's also very important that I find one that deals primarily with preschool kids and not middle school ones.

Dr. Mower wants to see Raquel again in another 6 months and at that point we'll discuss possibly adding another medication if her speech has not improved. No 24-hour EEG for at least another 6-9 months. He gave us the blood work request so he can check not only the Depakote levels but also her liver functioning. I'll do this later this week.

Understanding Words

This morning, I heard Raquel starting to wake up in her room. I love when everyone is still sleeping and I'm able to be with Raquel alone when things are nice and quiet. I was laying there with her, giving her little kisses and said, "I love you." She gave me a slight smile, and I asked her if she knew what it meant when I said that to her. She nodded her head yes and gave me a big grin. Then I said, "And you love Mommy, right?" She continued to smile and then began lightly stroking my face. I am convinced that she understands words and the time I had with her this morning was very rewarding.

We have our next neurological follow-up tomorrow. I'm really looking forward to getting Dr. Mower's input. I've also spoken with our insurance company and they have confirmed that they will accept a therapy authorization from him instead of Raquel's primary pediatrician (since she refused to sign the paperwork.) Once they get his authorization, I will receive a list of local speech and occupational therapists that I can choose from, and then it's as simple as calling them and scheduling the appointment. I'm hoping to have her in weekly speech sessions and then OT every other week. I've also left a message with Regional to see how I go about getting my copayments reinbursed because those will add up pretty quickly.

I still haven't decided what to do with her regarding school. I know Dr. Mower won't recommend keeping her in the orthopedic class tomorrow when we see him, but it's so hard to find a "place" for her. This morning I was talking to Mike about it and mentioned putting her in the daycare down the street. He quickly reminded me that I can't even handle her at times and that she needs a special kind of place with special kind of people working there. If anyone knows of such a place, or where I can find one, please let me know.

Raquel continues to be the most difficult at the 10:30am time slot. I still think it might be a blood sugar thing and am curious as to what her neurologist will have to say about it. This past weekend wasn't the best and I had a really hard time redirecting her. And the hitting and scratching and biting was back. I should own stock in makeup concealer by now. :-) But she continues to grow and progress and overall, I'm very pleased with the results of the medication. We'll see what recommendations Dr. Mower has tomorrow. Wish us luck!

A Really Nice Day

I'm starting to think that a good portion of Raquel's mood swings are food related. My girl, not being at all overweight for her age, absolutely LOVES to eat. I've been experimenting with giving her meals and snacks at different times throughout the day, and I've started to see a very familiar pattern. She definitely does not prefer to have a few big meals. She loves to graze throughout the day. And by using the word "graze", I'm not implying that she eats like a bird. Instead, she has an insatiable appetite - another possible side effect to the medication. It can either make you really hungry, or not hungry at all.

As far as snacks and meals went today, I gave them to her before I usually do. She was happy and content all morning until around 9am (very typical) when she wanted to leave and go do something. Once we came home from a few errands, she continued to be the happiest, most playful thing for the rest of the afternoon, even taking a 2 1/2 hour nap! Today I was able to do my workout with her in the room - something that NEVER happens. She hates when I do it - don't know if it's the loud Turbo music & sirens going off or her just knowing I'm going to be somewhat unavailable for awhile. But today she did great and was all smiles. At one point, when I asked her to get out of the way, she went up to the tv and acted like she was going to turn it off, and when I said, "No!", she cracked up. I've got to say that she was genuinely messing with me at that point, and I couldn't be happier about it.

Another change is that she is really turning into a "Daddy's Girl." The hubby has been putting in long hours and works the majority of the weekends so both girls (well, the 3 of us) are typically starved for his attention once he makes it home. Raquel now wants Dad to get her to sleep at night - not me - and when she wakes in the morning, runs to HIM instead of ME! What?!! So not liking that part but at the same time, the break is kind of nice and it gives me a chance to relax and have some alone time with Gabby.

I still haven't had the blood work done, but at this point, we see Dr. Mower in a week so figure I'll just do it then. Again, he didn't stress an urgency (and because I'll use any excuse to get out of anyone's blood work), and since I've been noticing her adjusting to the medications better (I think), I'm feeling a lot more optimistic these days than when I first called him voicing my concerns. But I am really looking forward to getting his input on Tuesday morning.

Appears To Be Adjusting To The Medication

Raquel has been really great these past few days. It seems as though she is finally adjusting to the Depakote. Her balance is improving and she's not nearly as clumsy. And she continues to babble more and more. Today, I swear she was singing along to Bob Marley...

One thing I've been doing differently is giving her the morning dose a couple hours later than I was typically giving it to her. This allows her to have more food in her stomach - breakfast plus a snack - and she hasn't been "crashing" as much, or as severe. It's really important that she has more solid food in her tummy before taking the medicine.

I've also been reading up on the side effects of Depakote, the main ones being constipation, headaches, dizziness, nausea, and drowsiness. Good times. So I've been trying to be a bit more proactive during her difficult moments. Does she have a headache? Is she tired or does she just need to lay down for a few minutes and rest? She'll now tell me - eventually - if she has a headache by either saying "yes" when I ask the question or she says "headache!" when I ask what is wrong. Both of the girls have been eating tons of watermelon, which is a great way to keep fluids in check, especially during the heatwave(s) we've been having out here.

Yesterday, we had a really great time at the beach. We haven't taken Raquel for many, many months because of it being a flipping nightmare the last time we took her. But Gabby has been begging and pleading so we finally agreed, with the deal being we'd only go for a short while. The waves were pretty big so Gabby couldn't go out as far as she'd like, but besides that drama, we had a lot of fun. Raquel absolutely LOVED the ocean this time. We jumped her over waves, and during the break between sets, she'd sit on the sand and just splash and splash around until the tide came back up. She was not even the slightest bit afraid, even when the water would go back down and make you feel a little wobbly on your feet.

After playing for over an hour, Mike took her to the shower to get her rinsed off, and once I changed her into some clean clothes, she became really content and mellow and it was at that point that I wished we would have come prepared to stay longer. But there's always next time.

Looking forward to the start of a positive week!

Two Steps Forward, One Step Back

That's how I've been feeling these days. Even though I definitely feel that the medication is having a positive effect on Raquel, things can still be very challenging to say the least.

One step back...

This morning, Raquel had a tantrum that caught me off guard because it brought back so many memories of how things used to be. I'm surprised at how easy it is to forget, but the flashbacks were loud and clear.

The day started out fine. She slept very well, had breakfast, and was just a happy little camper. We headed to the grocery store early to beat the heat, and she had a great time shopping with me, even playing with the balloons they were given by the checkout clerks. (SIDE NOTE: I hate those balloons! I'm convinced that the checkout people handing them out have no children of their own because who would wish that car ride home on anyone?). Anyway, on the way home, I rolled the windows down in the car so she could feel the wind in her face - she LOVES to feel her hair blowing, even with a loud blow dryer - and she was all smiles when we pulled up to the house.

I have to say that I have absolutely no idea what set her off. We came inside, I put on the television so she could watch Noggin while I carried in the groceries, like I always do, but I couldn't even make it to the door before she threw herself back and started hitting her head. I immediately thought she may be hungry, so grabbed some snacks and that made her even more upset. After about 30-minutes of being unable to calm her - and visualizing my groceries still sitting in the car - asked her if she wanted to go into the bath. She got up and ran to the bathroom door, and watched intently while I ran the water. But today, the water didn't work. She started to tantrum IN the bathtub, and I have to say that panic pretty much set in because I was very confident injury was just moments away. And getting a slippery 35+ pound girl having a tantrum out of a tub was a very hard thing to do.

Finally, I called for Gabby - who was playing in her room with a friend - to help me. I know it sounds sad that I had to call in a 7-year old for backup, but don't forget that Gabby witnessed over a year of in-home therapy, not to mention 6 months of the daily sessions, just like I did. She's wise beyond her age and I am fortunate that she doesn't get freaked out by it all and truly seems to understand the circumstance. Gabby layed down with Raquel on her bed, softly talking to her and rubbing her head, and Raquel slowly started to calm. I put on the music (music didn't work earlier either), and she began to calm even more and became much more manageable.

Gabby went back to playing with her friend, and I slowly began giving Raquel little snacks to see if she was ready to have lunch. Once she was fed and had some juice, she was almost back to her normal self again. But it took over 2 1/2 hours to get her there.

She was playing in her room when Mike came home for lunch, moments after she finally calmed down. He took one look at me, the house, groceries unpacked in the kitchen and asked what was going on. When I told him what happened - as he could hear Raquel laughing and playing in her room in the background - I knew he thought I was losing my mind. But Gabby backed my story. :-) Then he took the girls out for ice cream to give me a break.

Two steps forward...

Mike sent me this picture from Petco when they were out.



It may not seem like a big deal to you, but it reminded me of Coach, her Applied P.E. therapist. One of the biggest things I asked him to work on with Raquel was getting her comfortable walking outside of her own element. And look at her go! She cruised around the whole store - running into her Uncle Skip at one point - and just having a good ol' time. She also now walks up to the top of our cul-de-sac, which is a hill, then all the way back down. It's great exercise for her and helps strengthen her legs.

Overall, I'm noticing a lot more positive changes than negative ones. A lot of her behaviors at this point are age appropriate, but the lack of verbal communication continues to remain the hardest part. I will be resuming the PECS so she can at least tell me with pictures what she wants or needs, until she can be more vocal.

Staying Optimistic

I am very happy to report that Raquel has gone back to her somewhat normal sleeping patterns. Besides staying up a bit later, she's sleeping pretty sound again and has stopped giving me - knock on wood - my 3:30am wake up call.

She's still just really out of sorts and I don't know what to make of it all - except hearing that mother tell me that things can go backwards at any given time. Maybe that is what happened this last week or so. We did not do the bloodwork last Friday because it was such a rough morning, so I'm planning on taking her this Friday instead.

Raquel is still very much about routine, but it seems as though her routine is constantly changing, if that can even make sense to anyone but me. She no longer enjoys going on walks - perhaps it's just the stroller she's not liking anymore - but she can't tell me what the problem is. Halfway up the street she starts freaking out and we have to come home. Gabby thinks the sun in her eyes is bothering her, which is definitely a possibility with her sensory issues, and she doesn't seem to mind being pushed around the mall, so that's where we go sometimes before the stores open for our morning walk.

She does seem to be talking more - especially in the morning when she wakes up. Some of it I understand, some I don't. She may have developed her own language of sorts. She gets really animated and her pitch changes as well as her facial expressions. I definitely feel she is talking to me and trying to communicate, and I just answer her back, acknowledging the words like I was taught to do.

There are two things that have never changed: Raquel's love for (1) music, and (2) water. Both are secret weapons that snap her out of her tantrums almost immediately and I am constantly rotating between the two. The water can be a bit tricky at times because if she's not ready to get out, it can get pretty ugly. And you definitely cannot say, "water", "bath", "pool", or "wa-wa" without following through. Music works great - especially when we are out and about. I have her favorite songs on my cell phone that can be easily played in elevators, grocery stores, parks, etc. and make trips back to the car much more pleasant.

Actually, there is a third secret weapon - the Moose & Zee characters on Noggin. If she is playing in her room and Gabby is watching tv, she'll yell, "Raquel! It's Moose!" and Raqi comes running down the hall to watch. (NOTE: I have been unsuccessful at locating a Moose stuffed animal or blanket. If anyone knows where I can find one, please let me know. They are not sold on Noggin, as far as I can tell.)

I'm still in the process of getting Raquel's therapy resumed. Her pediatrician refused to sign the form stating therapy was a necessity, so now it goes to her neurologist. I'm sure he won't have an issue signing the form, especially with LKS in the picture. I thought I should have started with him in the first place but was obeying the chain of command I was given. Again, more valuable time wasted. When will I start listening to my gut?

I also spoke recently with Bev, my education consultant. She continues to be such a wealth of information. I don't know what I'd do without her input and guidance. And she makes herself so available to me - days, weekends, evenings. Anyone with a special needs child should definitely have a Bev in their corner providing accurate information. When I asked about her thoughts of putting Raquel in a "typical" daycare setting instead of a school one, she made a really great point about how the school is supposed to be working on potty training and self-care issues, and to make sure a typical daycare would be focusing on that as well. Just more to think about in the next month or two.

Besides a rough morning, Raquel had a really great day (so far) and I'm optimistic that things will get back on track a bit this week.

Why Respite Care Is So Important

Today, I was very fortunate to have Jennifer come and watch Raquel so I could briefly go to work, take Gabby to lunch, and then sit in on her summer literature class. I've said it before that one-on-one time with Gabby is very much a necessity right now, and today was another perfect example of that.

This morning wasn't the best. I mentioned yesterday that Raquel has been waking up earlier and earlier these days, and today was not an exception. We started our morning at 3:30am. I tried everything to get her back to sleep and finally said, "Screw it!" and made coffee. She had breakfast at 4:30am, watched a little television, and then Mike heard us shortly after 5:30am and asked what was going on. I told him that I was just about out of patience - AGAIN - and he said to go take a break while he dealt with her. About 20 minutes later, she was fast asleep. I guess she wanted her dad.

And then it was Groundhog's Day. She woke up around 8am, and we did the exact same routine: breakfast, a little tv, listened to music. I really didn't know what to make of it all but once I saw the enormous smile on Raquel's face when she saw Jennifer walk through the door, I had really high hopes for the day and looked forward to the alone time I was about to have with Gabby.

I really shouldn't have text messaged Jennifer at lunch to see how it was going but couldn't resist. I was hoping for a good report, but apparently Raquel was carrying on with her just like she has been with me and Jennifer wrote back: "Not a good day", which is really surprising because she's always very easy for Jenn to take care of, or at least to redirect. Today, it was hit or miss with her. Finally, she fell asleep and slept for about 1 1/2 hours.

Even though I knew Raquel was being difficult, I knew she was in good hands and was able to really enjoy my time with Gabby. She was an absolute doll the entire day, from being with me at work, to lunch, to watching her in class. I had so much fun seeing her have so much fun in a literature class!! There are only about 10 kids in it and everyone took turns reading out loud, doing skits about the stories they read, and playing a really cool tic-tac-toe game played with word endings. I'll definitely be doing that with her at home. What a great way to get them excited about creating words! And Gabby was so proud to have me in class. She kept looking towards me, giving me the thumbs up when she answered questions, and was just beaming the whole time.

So why is respite so important to me? Because when you are with a special child all the time, you need a break from it all. When you are with ANY child, you need a break from it all. But at least if you have a "typical" kid, they are much easier to hand over to others. Jennifer knows that Mike works 6 days a week and has limited time around here to help and that the responsibility of it all is pretty much on me and, sadly, Gabby. And she feels bad that she can't help more. I'm just thankful for the 4 hours a week I get and that she works to give other families 4+ hours a week so they can have their break. Most respite workers are highly qualified to deal with special needs children & adults, the elderly, and are certified in CPR, but make very little money in doing so. I think that is a really sad thing.

Today when I came home and saw my little curly locks - and knew at any given time she would, and did, start up - I had patience and was ready be a Mom again. And that is what really is important.

The Bookstore - Not Such A Great Idea

Raquel has been a bit out of sorts these days. I am very curious as to what adjustments (if any) her neurologist will make with her medication once her bloodwork is complete. One of the things I've learned from the mother I've been communicating with is to be prepared for regression at any given time. She said that sometimes her son will have great days, weeks, or months, and then will slip and have a couple of bad days, weeks, or months. I guess it can be a day-to-day thing at times. And patience is a virtue, right?

I don't know how to describe her "moods" except to say she has these difficult phases throughout the day that can start up at any given time. She's getting mad a lot more, and when she's mad, she'll hit her head and kick her feet until I can break her from doing it. Sometimes that can take me 30 seconds, other times 30 minutes. She's still napping very well during the day - between 1 1/2 - 2 hours - but I've definitely noticed a change in her night-time sleep patterns. She's tossing and turning a lot more. When I check on her, I find her in different positions with the blanket usually kicked off, and she's waking up earlier and earlier in the morning, which I'm really not thrilled about.

One thing she absolutely hates - and will trigger the behaviors - is me following her around in places outside our home. Here, cabinets and doors are locked, she can play quietly in her room, and roam around the house as she pleases. That's not true elsewhere. I have to constantly stay on my guard with her, which really takes the fun out of going places for the most part. For instance, our outing to the local bookstore...

I had to make a very quick stop to pick up a book for Gabby's summer literature class. Since I knew exactly what I needed and thought the timing was good, I decided to take Raquel with us instead of waiting until Mike came home from work. Everything was fine at first - both girls were playing on the little stage and having fun - until Raquel spotted some really enticing sound books on the bottom shelf and started pushing the buttons to hear the noises. Since there were only a few people in the store, I didn't make an issue out of it. After all, a little girl is entitled to have some fun at the bookstore! But then she got up and bolted from me, taking out as many books as possible along the way. I ran after her, picking them up as quickly as possible, trying to neatly put them back while preventing her from doing more damage. When I was finally able to grab her, the lady working there quickly asked what I needed and immediately went and fetched the book for me. She then showed me where to check out. I'm thinking story time at the library is probably not in our near future.

I do realize that a lot of her behaviors are age appropriate, which is truly a good thing. But when you factor in her inability to effectively communicate or express herself, it can make a bad situation even worse. But I continue to learn and am getting better at reading her. And I'm noticing that certain times of the day are most behavior provoking: around 8:30am, 10:30am, & 3:30pm.

Next up is her bloodwork, which is happening on Friday morning. After that, I'll talk to her neurologist early next week and see what he recommends.

A Very Encouraged Neurologist

I spoke with Dr. Mower, Raquel's neurologist, a little while ago regarding my concerns about her clumbsy walking and the bruising. He said that Depakote is known to affect both of those areas and put in the order for blood work (sigh) to test her platelet levels. Even though she is on a pretty low dose, it may need to be lowered a bit more. The blood test needs to be done before I give her the morning Depakote dose, which is usually between 8:30am - 9:00am.

When he asked me if I've noticed any changes in her and I said yes, he immediately wanted to know more. When I described the changes is in her sleep patterns - particularly at night - he was very excited and said that showed the medication is definitely doing its job and altering the abnormal brain discharges. I also told him about how she doesn't hit herself in the head, unless very tired or distressed, that she no longer is constantly moving, and that her teachers reported she is able to stay focused in activities for longer durations. He said those are behavior changes, and another really great thing. I believe the last comment he said to me was, "This is awesome!"

So, now I need to go to Children's Hospital and have the blood test done. He said there is no urgency in doing so, but, of course, the sooner the better. Once that is complete, I call his office the next day and review the results with him and go from there. It was nice to hear him sounding so encouraged. :-)

Not Wanting To Call The Neurologist

This afternoon, Raquel fell asleep at naptime as I was holding her. I've gotten so used to giving her a kiss, telling her "night-night" and putting her in bed that I'd forgotten how wonderful it is to share that special closeness we had when she was a baby. Instead of carrying her right to bed, I just held her and watched her sleep. She looked so peaceful, I didn't want to move her. Of course, I eventually did.

I'm told by some that they don't know how I do what I do in regards to Raquel. Sometimes I don't know either. She exhausts nearly all of my energy on a daily basis. And that can be really hard - especially considering I'm not just a mom to her, but also a very active and demanding 7-year old, not to mention being a wife first. I'm fortunate to have a husband who understands that if he comes home to me in sweats, my hair in a ponytail, with no makeup on, it's nothing directed at him. Either I (1) forgot and hadn't looked at myself all day or (2) just had one of those "Raquel" days.

Today when she slept, I couldn't help but think about what the future holds for us. I so desperately want to know what she is thinking and feeling. That is what eats me up inside - not knowing. I do know that she uses the majority of her words when I am present. She also saves her worst behavior for me (such as hitting me in the eye with a water bottle at close range), but can also be the most loving and affectionate little girl on the planet - when she chooses to do so.

Unfortunately, since increasing the Depakote doseage at night, I'm noticing that Raquel is becoming more and more unstable on her feet. She's very wobbly and is constantly walking into things and falling down. And, she's bruising easily. Not good. I know I need to call her neurologist but know that he'll want to do blood work and I don't want to go back to the "testing" stage. I promised her we were all done with tests for awhile, and realize now that I wanted to think that the most.

And guess who I heard from today? The school district. The program specialist returned my phone calls from about a month ago. I'm still amazed at how they portray themselves as having Raquel's best interests at heart. She told me that she spoke with Raquel's teacher and he thought everything was fine and didn't know why I'd be calling. Um, hello??? When I said that she wasn't getting the therapy she needed, she became very defensive - until I gave her some specifics. She asked if I was "told" this or "knew" this, and once I said that I "witnessed" it, and was thinking about getting an inter-district transfer, the tone drastically changed. But she said she was the only one there over the course of the summer (not true) and that we couldn't meet until after school starts back up in fall (again, not true). But, I don't really care and I didn't force the issues. I'm going to continue to push therapy in other options over the summer. Again, not convinced this school setting is the most appropriate for my girl. As it stands right now, she will resume school in mid-August in the ortho class she was in before.

I have also been communicating with a parent of a 7-year old boy diagnosed with LKS. We are in the very early stages of this, but it's really nice talking to someone sort of going through the same thing and able give me advice. I'll continue to seek out additional support groups.

Trying To Find A LKS Support Group

I was pretty excited today to learn of a Landau-Kleffner Syndrome support group. Turns out, there are only 5 members. I know it's a rare disorder, but c'mon people! There's got to be something going on out there!! But at least it is a starting point.

But then it made me wonder. What if there's not? What if there are people going through the same thing as me without anywhere to turn for advice, reassurance, and most importantly - support and encouragement? It makes you kind of start to put things in perspective and realize why you may have been given a specific deck of cards in the first place. Is this the point where I need to step up to the plate and instead of searching for something, actually DO something that can help other people? And if so, how and in what capacity?

I do know that if I knew then what I know now, a lot of things would be different and I need to figure out a way to let parents know how to force the system to work. I've said it before that you have to push-push-push, and I don't mean lightly.

Unfortunately, my request for additional respite hours (I get 4 hours per week) was denied due to budget cuts. I was really looking forward to another 4 hours added - as I was told would happen earlier this year - but I guess need to be happy with what I have. My case worker today told me that hours have been reduced for many, which makes me very sad. Respite is key to keeping your sanity. At least for me. When you are dealing with a special needs child - and a very demanding one - you really do need a chance to remove yourself and recharge. They will re-evaluate again on her 4th birthday and hopefully I'll get an increase in hours then.

I was also given the contact info for another school district so we can do an inter-district transfer. Hopefully they will be more responsive than what I've been dealing with in ours. I've also spoken with my insurance company and found out that they cover both occupation and speech therapy if she's not getting her needs met through the district. Looks like she may be seeing Karin (her previous OT) in the very near future...

Learning Some Lessons

On Father's Day, I realized the importance of being prepared when it comes to Raquel's allergies. Although she did have allergy testing done several months ago and was prescribed the EpiPen because digesting cashews could make her go into anaphylactic shock, I guess I've been pretty laid back about it. I've simply made sure that she stays away from nuts. That should work, right? Yes, if she's only allergic to the nuts. But the allergy test did not test for every single thing out there. Most environmental stuff was ruled out, as well as our beautiful Annie Dog, but Sunday was a different story.

She was a happy little girl all Sunday morning, and was playing and laughing the entire 45-minute drive to my in-law's house. In fact, the girls were carrying on so much that I suggested we play the silent game to see how long we could all go without making a sound. That game, unfortunately, never lasts very long in this family. Especially when you put Gabby into the picture. She really thinks she was given her name because she talks so much. :-)

As soon as we arrived at Mike's parent's, he immediately started giving her some snacks, one being smoked salmon, which she absolutely loved. But it was really close to her nap time and she started to get pretty fussy right away, so he gave her to me to get to sleep while he left with his dad and Gabby to go visit neighbors. Right when they were leaving, I asked Mike if she hit her lip because the corner of it appeared to be swollen. He said no, that she was fine, and off they went. Then a few minutes later, I asked my mother-in-law if her mouth looked swollen. She said no, but I was still really concerned. And then it happened: her face started to swell - mostly her mouth and cheeks - her eyes got all red, and then some hives appeared. When she asked me if I had her EpiPen - and I didn't - I also realized I didn't have any Benadryl on me either. Really not a good thing at all.

I didn't particularly freak out because this appeared much different than the cashew incident, but once I noticed the hives developing on her arms, I headed to the closest drug store for some Benadryl, and she immediately started looking better once I gave it to her. Unfortunately, she remained very irritable for the rest of the day and was just really out of sorts. So... I've stopped taking the allergy thing lightly and now carry the Epi-Pen wherever I go - along with some Benadryl. Just the thought of possibly ending up in ER last Sunday is horrifying.

I've also learned the importance of having some one-on-one time with Gabby. She and I have been constantly butting heads lately and I've been thinking it was just her being 7. That's probably part of it, but today Mike came home at lunch to watch Raquel so Gabby and I could go to Toys-R-Us. She was a completely different child. She wanted to hold my hand and stayed close by my side throughout the store. It was really nice. I didn't realize how starved for my undivided attention she was until today. We will definitely be resuming our "date night" very soon.

And finally, today I realized why I had more "boy" friends than "girl" friends growing up: Girls are mean to each other and I can't believe how early it starts! The groups, the "clicks", the "You're wearing THAT?" stuff is truly unbelievable. To see how these neighborhood girls are to each other and how they treat Gabby is really a bummer. I'm always calling the parents and sound like a broken record saying, "If they can't be kind to each other then they shouldn't play." I think it's going to be a long summer!

And Just A Couple More...

Today, Jennifer had fun playing dress up with Raquel. She has finally learned the trick to keeping things in her hair: ignore them. As soon as you say, "Look how cute!" or make any kind of acknowledgment, Raquel will immediately take them out. Gabby took these pictures earlier, and I just had to add them.







Happy Friday!

Had To Add Some Pictures

This morning, I briefly stopped by work, and when my friend and helper, Terri, met us at the car, she immediately said, "Oh my gosh! Look at her hair!" as soon as she saw Raquel. I glanced at the back seat - still not able to completely shake that final 24-hour EEG image - and thought she had done something unknown to me during our short ride to work. What Terri was referring to was how much her hair has grown out and how big she is getting.

Earlier this morning, I had that same realization: I was getting her dressed, grabbed a pair of hot pink stretch pants, and was puzzled watching her walk around the living room shortly after. The pants just seemed loose on her for some reason. A few minutes later, I looked at the tag and discovered that I had put Gabby's hot pink stretch pants (hey, every girl's gotta have a pair or two, right?) mistakenly in Raquel's drawer and she was wearing them instead! And they pretty much fit! Gabby is only about a head taller than her now. She really has grown a lot.

So, I thought it was time for me to put some new pictures on her blog. This is how most of you probably still picture her looking. These were taken by Cari during her final ABA session on her third birthday in mid-January:





And these were taken last night before bedtime in front of our friend's house.







She's definitely got some curls going - and LOVES to have her hair brushed. I'm sure her Samoan cousins are proud. :-)