Christina and numbers

Wow, it's been a while since I have posted. Busy Mama right here! Chris comes home in 10 days...the excitement in this house cannot be explained!!! We can't wait to reconnect and have our family together again.

The twins are 4 now and had an awesome birthday party. About 23 of their friends came to celebrate with them and had a ton of fun!

So, what's new around here? Well, Christina's biomedical treatments are still in full effect. She had her last labs drawn about a week ago and I will know the results soon. We are simply looking for pieces to the puzzle so that we can put them together. I will say that she has dramatically changed since the last blog post. She is talking a lot more and communicating her needs/wants (she used to scream to communicate), her focus is much better, and her awareness has improved as well. There was a point where I wasn't sure Christina knew what I was saying to her. She wouldn't even acknowledge that anyone was speaking to her.  I can now give her simple 2-3 step directions, and she follows them! I can also ask her a question and she responds in a way that I am certain she understands me. We also have a 24-hour EEG coming up on September 19th-20th to see if Christina's seizure activity is getting better. Crossing my fingers...

Christina is also doing simple math. She is going to be one of those people with Autism who is a number wizard. I didn't think too much of it, but at the park while climbing on the equipment, she counts 1,2,3,4,5...and then looks up and pauses. She then will pick up at 8,9, and end in 10 if there are 3 steps left.  She wants everything to end in 10. So, she is able to do simple math in her head and knows which number to start back on...  AMAZING if you ask me! Not only is she doing this at the park, but she is also doing this at home. She had lined up some toys yesterday, but there weren't 10 of them.  She started her counting, got half way through and looked at the last one, and then started on a number that when she was done counting, ended in 10.  How can she do this??? Her brain is wired differently, that's how. Where she is lacking in one area, she makes up for it a thousand times over in another. I can't wait to see what else she will do with numbers.

She has been spelling lately, too. People with Autism rely on things that are constant and don't change. That is why she is excelling way beyond her brother (and other typical kids for that matter) in these areas. Letters and numbers will always remain the same.I can't wait to see what else she has to show me. She is a smart little girl!

Andrew started school today at Christina's preschool as a typical/role model peer. I am very proud of that kid! He has been around Autism and the behaviors that come with it so he should be proud of himself as well for being chosen to help and be a role model for other children. I was also asked if he could be a role model for another boy with Autism at Christina's speech therapy. The goal is to get the two to play together and converse back and forth. Wow, I really do have two amazing kiddos! So proud of them both!

Autism in July

A few new things going on in our world of Autism...

Biomedical supplements have been in full effect for the past 2 months. I have been giving Christina the B12 shots every 3 nights. At first she didn't even wake up or flinch, but now she's on to me! I soon as I clean the area, she grabs her butt...in her sleep!!! I make the shot quick. I, as well as most of her therapists, have noticed that her focus, awareness, and concentration are starting to improve. She has also started taking fish oil and taurine (which is supposed to help reduce seizure activity). We see Dr. Sears again at the end of July.

Christina had to have 3 different lab kits done. Two were blood labs (which was a complete nightmare) and the other was a stool/urine kit where I had to collect this and place it in the containers myself. Gosh I love being a Mama!!! I never fantasized about digging in my kids poop and placing it in the freezer in different vials. The price we pay for wanting answers...

The labs in Temecula/Murrieta were horrible. I called these places ahead of time to inform them that Christina has Autism and somehow gains superhuman strength when a needle comes towards her. She literally turns into the Incredible Hulk! They assured me that they had the staff and the ability to draw her blood for the kits. WRONG. All they ended up doing was putting Christina and I (and Andrew) through torture. She got the physical torture of the techs digging in her arms with a needle and unable to stick a vein. Me... I was struck with the emotional piece - and so was Andrew. All I kept thinking was "Why am I doing this to her? What are these tests going to prove?" I wanted nothing more than to stick my arm out and have them take it from me. Holding back my anger towards the people hurting my baby girl is impossible at times. Crying all the way home from an unsuccessful lab draw is really no fun, either. After a tech ruining the blood kit and blaming it on my daughter, Mama had to put her foot down. I was told to try somewhere else. Unacceptable! I told them to use their vials and to get the blood and that I was not leaving without it. They already had BOTH of my kids crying their little eyes out. I know that Andrew was scared for his sister. Not being able to comfort him while I was trying to hold Tina down made me feel helpless to say the least.

Here is why I am doing this to her and this is where I have to suck it up and finish her lab tests - her one lab kit came back showing an intolerance/allergy to food items such as gluten, wheat, barley, rye, peanuts, walnuts, soy, lobster, bakers yeast etc. Finally, I have some sort of answer on paper. But, PEANUTS?!?! She eats PB&J often. My poor baby...it's hard not to feel guilty that I have been feeding her the very things that are making her feel miserable. I will go ahead and admit that I cry a lot out of guilt. Even though I didn't realize it, it's hard that what I was feeding her may have been causing her outbursts. I was going to "try" the Gluten-free diet just to see what happens, but as of now, simply trying it is not an option. Christina is completely free of those food items in her diet now. I can only imagine that she may regress as her body does its "detox" and I am prepared for that knowing that her little belly is healing. Another kit showed that her stomach secretes abnormally small amounts of what is supposed to be secreted in the stool. I am still trying to wrap my head around this one, as I am not a Doctor. Google is my best friend until we have our appointment at the end of July.

We also saw the neurologist last week and are waiting to have another 24-hour ambulatory EEG scheduled. It is our hope that the seizure activity is minimizing and that her epilepsy medication is doing what it is supposed to. It had been a few months since the neurologist saw Christina and she was impressed with her developing language. Since seizure activity is occurring in the part of her brain that controls language, I am hoping that the activity is decreasing.

Whew! We are a busy family. We still have teachers coming in the home 4-5 times per week, sometimes twice per day. She is still progressing at speech, OT, and PT, too. I have actually seen the most tremendous gains out of PT. Christina used to have depth perception issues and was not able to jump, walk up/down stairs, or even walk down a 2-inch step on the porch. She is now climbing the rock wall as high as her therapist will let her and riding the zip-line! Summer school is ending next week and we will prepare ourselves for the journey of the next school year for her. When I look back a year ago and really reflect on the progress, I am blown away. Andrew was interviewed and selected to be a typical role-model peer at her preschool as well. He makes me so proud and I know he is going to love helping out and setting an example for the other kids. He is amazing.

With all of this, I want everyone to know that I am in no way trying to "cure" my daughter because that is impossible. What I want people to know is that I am a fighter for her. I will stop at nothing to obtain every test and therapy that there is available to Christina. And if it's not available... well, I am going to find a way to make it happen. I am her one and only advocate and I am her voice. The pressure of being directly responsible for her progress is absolutely overwhelming, but truly rewarding at the same time. As her Mother, I accept her for who she is, not what I hope she will be someday. She will always have Autism, but there is so much potential in this little girl.  And as her advocate, I am going to push her because I know she is just as much of a fighter as I am.

What is ABA?

What is ABA? Well, ABA stands for Applied Behavior Analysis and it one of the most widely used treatments for Autism. Studies have shown that behaviors can be taught through a system of rewards and consequences. The behavioral piece is based on scientific principals of behavior and the analysis piece of it is when the progress is measured (usually by data collection) and specific interventions are modified.


Christina has been receiving ABA therapy since she was 2 years old and continues this therapy 4 times per week - usually 2 and 1/2 hours a session. Right now, her skills trainers are working on gaining her compliance. She is expected to follow directions, such as sitting at a table and tending to certain tasks. When Christina does what she is expected to do, she is rewarded with either food items or her favorite toys. She is smart too, if she knows what the reward is and doesn't care for it at that time, she won't work for it. Most of the time though, she shows that she wants to learn and craves the praise she receives! She loves to be told what a great job she is doing. The glow on her sweet little face is indescribable when she knows she has done something well.


It is amazing to see her tending to a task for a long period of time. This little girl LOVES puzzles and the challenge that new ones present to her. 


Here are two clips from her ABA session yesterday. In the first video, you will see Christina focusing on an ABC puzzle, then losing focus on it, and regaining focus. She knows that after finishing it, she gets an M&M, which motivates her...


The second video shows her skills trainer, Jonathan, gaining her compliance. He leads her, then walks away and sits and the table. He tells her "come here", and then rewards her for her compliance. The point of this is to get Christina to listen when I (or anyone) tell her "come here" when she is asked in any given situation.


Most people don't realize how challenging some of the most basic things are for children on the spectrum - like compliance and focus. Raising twins, where one is "typical" and one is on the spectrum, is the most challenging thing I have ever had to face - It is like night and day. For whatever reason that I have been faced with this challenge, I am grateful because I have never been so tough, so patient, and so willing to learn about something. Christina and I are BOTH determined to progress forward because the truth is, we are BOTH learning. We are learning how to get through this together...

From the "diagnosis" to present day

Since Christina first saw the neurologist in September 2010, until now, she has made some AMAZING progress. That day in September marked a new beginning for our family. Autism, Landau-Kleffner Syndome, or whatever it is...it doesn't matter because Christina is showing me that she wants to grow, she wants to learn, and she wants to be like "normal" children. The drive in such a small child gives me so much inspiration. It really makes you stop and think of all of the things that "normal" people take for granted...like talking and being perfectly capable of expressing our needs and wants. When Christina wants something, I can see it on her face that she knows exactly what it is, but she cannot tell me most times and that is when she becomes frustrated. I sat and thought about this for a while, and remembered when I spent three years in Japan. I did not know Japanese and I remember feeling completely helpless trying to communicate with the locals. I often think of my time spent in Japan and the frustration that I felt when it came to communication with human beings and I have to say, I know exactly how she feels. 


Anyway, I want to share with everyone what we have been through medically with Christina. 


First, she was tested for certain genetic disorders such as Fragile X and Angelmans Syndrome, which all came back negative. Since there is not a specific blood test for Autism, the neurologist wanted to have an EEG test done on her. The point of this test was to see if Christina was having seizures, specifically found in Landau-Kleffner Syndrome. This test measures Christina's brain waves over a 24-hour period. Basically, we go into the hospital and about 20 probes are glued to her head, which have a long dangling cord attached to a device that reads the brain waves in a back-pack type pouch. We are then sent home and she is to go about her business for 24-hours. To date she has had 2 of these tests at home and one in the hospital. After the results of her very first EEG came back, to my surprise, Christina has VERY ABNORMAL brain waves which occur mostly during sleep. When her head hits the pillow at night, her brain goes crazy, which breaks my heart each and every night when I put her to bed. To date, she is still having these seizures. They occur on the front-right part of her brain, which is a direct result of her inability to communicate effectively. We are currently waiting insurance approval for another EEG.

 Christina during a 24-hour video EEG at Rady Children's Hospital

 "Someone let me out of here!"

A therapy dog came to see her and she was saying goodbye :)

After we were told that Christina was having seizures, we tried a couple of medications. One of the medications we tried was steroids. She was on them for 5 months and it was a complete nightmare - not just for her, but for our family. The only change I saw in what was once a sweet little girl was RAGE. Yep, Christina had "roid rage". She developed the typical "moon face" of someone on long-term steroids and had a bulging belly. She gained 17 pounds in just a matter of 3 months, which is a lot on a two year old's body. It was very difficult to find clothes to fit her. I want to say that putting her on that medication was a mistake, but I do feel that after all of that torture, she gained some receptive language. Receptive language is the ability to understand what is being said. She was taken off of the steroids due to high blood pressure, but when she was taken off I noticed the improvement that the steroids had on her. She is now on a medication called Trileptal, which has prevented worse things from happening I suppose. 

The following photos are what a two-year old looks like on steroids. I am sobbing as I post them - the guilt I feel for giving her this medication is indescribable...It causes me great pain to look back on these pictures of her.

Christina trasformed so much physically that she did not look like the same kid. To me, she was still beautiful. She is an amazing kid for still showing me that she truly loves me after I have given her this medication and put her through so much.  She has been off of the steroid for a little over a year and is back to her slender self. She is as smart as she is beautiful...

Christina, Spring 2012

So after numerous labs, medications, therapies, you name it...here we are. My baby girl is requesting things on her own by saying "I want..." and attempting to tell me what she wants. She knows her ABC's, counts to 23, knows all of her shapes and colors, and spontaneously names what she sees. She also loves animals and can name harder animals like rhino, hippo, and knows the difference between whales, dolphins, and sharks. Christina willingly goes through 40 hours a week of therapy (including special ED preschool) and shows me that miracles CAN happen. Her good days, and even her bad days (hey, everyone has them!) give me the drive to continue to fight for what she needs. She has taught me patience and understanding and I thank her for that. She has also made me want to make other people aware of what Autism is and what it is like to live with...I want to tell the world because there are so many people that look at her and assume that she is a misbehaved child or a brat. She is neither of those. She is a sweet, loving little girl who is struggling with communication and sensory issues.

 And with all of this, her twin brother has been nothing short of amazing. He is the most patient and understanding brother to her...I couldn't ask for more out of him. He sits through all of her weekly appointments and has even been trying to help her lately. 

Aside from preschool, Christina has an in-home therapist 4 times a week and goes to speech, occupational therapy, and physical therapy 2 times a week. She and I have also been attending a 12 week parent/child training at the Rady Children's Autism Institute once a week in San Diego. I am learning a lot!

The most recent treatment for her besides therapy, is biomedical treatment (Diet change and supplements). I sure hope we see more progress. And if we don't, well then I wont have to wonder if this approach would have worked if we didn't try it... Any avenue I see for her, I will try. Her former pediatrician once told me that "Behind every successful child is a Mother who never gave up" - and I am that Mother. I will never give up on her, not even on her worst days. 

Dr. Sears visit, a biomedical approach for Autism

Christina had her appointment with Dr. Sears on Monday, and oh am I in for it! That doesn't matter though because I would do anything for that little girl. Easy or hard- I will do anything.


Why did I decide to try the biomedical route? Well, simply because other than intense therapy, her symptoms/behaviors have not changed much. I certainly don't expect for her to wake up one day after a couple weeks of this approach and seem completely "healed". I am hopeful for some positive changes though, because stuffing her with risperidal is just not the answer. I hate that medication...I cringe when I have to give it to her actually.


Dr. Sears recommended that we start her on a few supplements (fish oil, taurine, and B12 injections). So far, I have given 3 doses of the fish oil and the very first B12 injection was given about 30 minutes ago! I was to give this to her while she is asleep. She flinched and let out the cutest little sigh. It was so easy! Not sure what I was worked up about. I thought maybe I'd spend the next 2 hours in her room comforting and soothing her back to sleep...nope! Still sleeping away!


We are waiting on some lab kits to come in the mail now. After the labs are completed, then we will start the casein free diet. This may not go too pretty because dairy is Christina's all time fav! Two weeks after going Casein free, we are to go gluten free. 


While all of this seems time consuming and strict, as a Mother to Christina- I have to try this approach. No regrets! She shows me in ways of her own that let me know there is a bright kid in there. She just has trouble getting most of it out.


So that was the visit with Dr. Sears - very kind and compassionate Doctor. Christina even tried signing to him (itsy bitsy spider) and told him "Hi dare". We will see him in about a month when all of her labs are back.  Until then...supplements and diet changes here we come! 

Sidewalk surfin? LOVE HER!!!

Little Miracles

The smallest little miracles, the meaning of Christina's words - I notice them now like I never did before. To know in my heart that she is in tune with the world around her is a miracle within itself. Some days I am not quite sure that she is understanding much of what is being said to her. Listening to her babble like an infant most of the time makes me wonder... She does however, say a lot of things that have TRUE meaning. Of course everything she says has meaning to her, but I am talking about the things that myself and others can understand. She is such a miracle. Every single word is like a melody...that little girl gives it her all and tries SO hard.


Tonight after her bath, Chris was trying to get her dressed while all she could do was kick her legs and scream. It ended up being a huge tantrum. She kept saying "Aye-yull! Aye-yull!".As I am trying to help Chris figure out what she wants (took me 10 minutes), it clicked- She just wanted her Ariel pajamas! I pulled them out of her dresser and after I put them on, she was a happy little mermaid girl :) 


She had difficulty calming down and falling asleep. So, as I laid with her in bed, I sang this song... I can't help but wonder if she knows how proud I am of her. I'm pretty sure she makes herself proud! She gives me so much hope, so much joy, so much love. My miracle girl... <3

An unexpected deployment

Well, a couple of days ago, Chris was told that he will be going on a deployment with the USS Mercy (a hospital ship). All I am told is that this is a humanitarian mission. Not sure if that's true or not... It came as a shock because he leaves in a week and is on shore-duty, not stationed on a ship. I appreciate all of the support from my friends and family. But, for those who say "well he's in the Navy", I really don't need to hear that. I know what branch he is in and I have known that ever since I have known him. I realize that he is needed, it was just so unexpected and hit me like a ton of bricks. I think I would have been able to swallow it better if he were stationed on a ship. We have been scrambling to take care of things around here and spend as much family time together as we can. 

The ship actually leaves today, but he will be leaving next Tuesday to fly out and meet the ship. I thought it was hard when he deployed while the twins were babies, but I know this is going to be one of the hardest ones. I have a lot on my plate right now, so I do ask that friends and family support me emotionally. I didn't expect to go through this for another two years. 


We went to the aquarium over the weekend...here are some pics :)