Friday, April 13, 2012
I haven't posted in forever. I am not even going to promise that I will post more often. Life has been a bit... chaotic.
Good news are that we are alive and doing fairly well.
As some of you may know, we started Janai in daycare last year for a bit of socialization and to address the delays and issues that Dr. Williamson and us noticed in her 2 yr evaluation. He felt Janai was showing some signs of Pervasive Developmental Disorder. I was in denial for a short period of time and thought that maybe Janai was struggling due to being a stay at home baby. So, we started her in toddler daycare program in a local preschool.
Janai struggled so much to adapt to the daycare/school. We started her 5 days a week to get her accustomed to it and switched her to 2 days per week when things seemed a bit better. It was almost 6 months before we were able to drop Janai off without her being in tears. As I kept waiting for her to start "talking" and hearing people tell me that "she will talk soon", I started to get the feeling that something was in fact off. Janai could speak (knew numbers, letters, colors, recited her books and repeated what we said), but she would not use her words to communicate a need or respond to a question unless it was an abstract concept like naming colors or objects or saying the sound animals made.
A psychologist said we needed to start speech therapy and as I looked for a therapist, many of the websites and clinics mentioned treating kids with autism and sensory processing disorders. Speech therapy started in September. Meanwhile, I researched sensory processing disorder (SPD) and most of the symptoms fit with Janai's behavior. Since Occupational Therapy is very helpful for SPD, I set off to find an therapist for that too. Janai began receiving occupational therapy in October. By the end of the year something inside me told me that Janai was not progressing as I thougth she would in the daycare/school. Janai was having a lot of meltdowns and she seemed increasingly frustrated at not being able to tell us what she wanted and us not being able to guess her need quickly enough. She never even really looked excited about going to little school
Our Speech and Language Pathologist (SLP) said she thought Janai would benefit from going to a special ed school before participating in a regular classroom. So, I set off to find a special ed school and scheduled another eval with Dr Williamson. I could tell something was not right so I started to "prepare" myself to hear her formal diagnosis. I told Adrian that he needed to prepare himself for hearing what he so much refused to see. He felt Janai's behavior was a consequence of being too spoiled and clingy. Nevertheless, I figured it was better to address any issues now as opposed to waiting 3 or 4 years and regret wasting time. I can't remember how many times I would hear from friends and family "you just need to wait and give her time and she'll talk" and "she's just fine because I have a friend with 3 preemies and they are all ok". Ocassionally, I did question myself but I decided I had to follow my instinct and continue to advocate for my little girl.
By the time we went to Dr Williamson's appt for an eval, we had applied to Parish school and Janai was rejected due to her poor regulation. She freaked out when she found herself alone with the SLP that was evaluating her for admission and it took a long while for me to get her to calm down. Janai's stranger anxiety was exacerbated after the Parish admissions evaluation. At Dr. Williamson's appt in February 2012, Janai cried/screamed/shrieked for over an hour because she wanted us to walk out. During a small pause in her crying, a simple look from Dr Williamson was enough to set her off again. Eventually, she distracted herself watching her own videos on Adrian's iPhone and she calmed enough to participate in the evaluation. During the appt, based on the results of the questionaires and behaviors we described, Dr Williamson broke the confirmation to us: Janai is on the autism spectrum with Pervasive Developmental Disorder. Her delay gap between her actual age and development age has widened since her last eval which is more concerning as the gap may be get too big if it continues that trend. We suspect her austim is due to her being a preemie, but the Dr suggested some genetic testing to find other reasons - the diagnosis would not change though.
We received Dr Williamson's formal evaluation report two months ago and when I read the report is when the news "formally" sinked in. My little girl is autistic. Why? How? Why her? Why me? It didnt matter how much I thought I had prepared myself to hear it, I hated to hear that. I sobbed, and still do ocassionally, mourning her health and future.
The report the daycare/school to Dr Williamson was disheartening. According to them, Janai did not know numbers or letter and did not ride their tricycles. But at home, Janai has known the ABC since 2 yrs old, recognized all upper case letters, counted to 50 on her own and knew primary colors and shapes. Her favorite activity at home for the past year has been riding the tricycle. Yet, she would never do any of this at the little school. I regret not getting her out sooner. The daycare/school staff were wonderful but they were not trained to help Janai and they had too many children to give her the attention she required.
Since then, Janai has started attending The Westview School, a school specifically for autistic children. With the help of her wonderful Speech Therapist (Judy Boshart), Occupational Therapists (Sabrina Sosa Madriguali and Pam Paguio), her school Teacher (Ashlee Mataway) and Teacher Assistant (Rocio) plus many other wonderful staff members at the Westview School, Janai has made great progress. She is still not talking conversationally, but does say a few words on cue to request things and she seems very willing and interested in interacting with the kids. Westview staff knew of her extreme separation anxiety, but we were so surprised to see that in a matter of a couple of weeks Janai acclimated quite well. Currently, when I say "we're going to school", she gets off the bed and goes downstairs excited to leave and has a huge smile coming home. She welcomes me home with a hug, which was hard to get before. Out of the blue, she mentiones her teacher's name or a classmate's name which lets me know she is thinking of school, comes home singing their songs, etc. The teacher has sent me videos which show how much Janai is enjoying herself.
Janai's meltdowns at home are somewhat better. If the meltdown is not very bad, I can calm her down with tricks that Janai's Teacher Assistant Rocio taught me. If the meltdown is bad, Janai has started to swing her arms/hands at us. Of course people stare, but I have had to grow thicker skin. I am hoping that with the help of the behavioral therapist, we will be able to control the meltdowns when they happen as well as Janai gaining ability to not go into meltdowns as often.
Before starting with Westview, we had applied at The Monarch School. We were thrilled to find out that Janai was accepted! We are waiting to find out if we quality for financial assistance as that is the only way we could send Janai to their school. We know Monarch has a wonderful program that includes DIR/Floortime therapy, their class day is longer and the therapies are included in the tuition. The credentials of all their staff members are amazing and some of the success stories bring me to tears. If for some reason, we do not get financial assistance to switch to Monarch, however, I am confident that Westview will be great for Janai based on the amazing progress we have seen in two months with Janai.
I continue to research and read of anything else that I can educate me to help Janai or find out any other treatments that may be helpful for her. These days, I am reading about neurofeedback and biomedicine to treat autism. I am soon going to buy Janai an iPad since I have read great things about their apps helping special needs children to communicate. If you have any tips on therapies or ideas that have helped you, please share!
Seeing your dreams for your child sort of disappear and be replaced with the overwhelming (and costly) challenge ahead with an unknown future really shook me to the core for a while in addition to other family matters that were really draining the little bit of energy I could muster. These days, I feel a lot more positive. The bad vibes have moved away and the future seems brigther. I am confident that, with the proper help, my little girl will be independent, and I am eagerly looking forward to the day when I will ask her "how was school today?" and she will actually answer.
P.S. It was great to finally type this post! I hope everyone is doing well! Here is one of the most recent pictures I have of Janai and myself from about 3 wks ago. She is into my makeup now and let me put blush, eye shadow and lipstick on her. If I can get her to not eat the lipstick, I probably would consider lending her my makeup bag for a few minutes! My camera got wet and died, but I hope to get a new camera soon so that I can take more videos and photos again.
P.S. #2. For those of you who know Adrian, we have decided to separate and get a divorce and he has moved out of the house as of two weeks ago. We are amicable (as much as possible :-D) for the sake of Janai and her progress. While this is not the happy ending I dreamed of, I am sure this is in the best interest of everyone involved. My parents continue to be my rock of support as they have always been as well as a few friends who know the details and have lend me their shoulder, and Janai is my driving force to move forward.
Wednesday, September 22, 2010
We bought her first trycicle and Adrian put it together on Monday, so I can't wait to see her try it. We did a small trial in the kitchen, and she seemed ok with it, but she was more interested in pushing it than riding on it. My little girl caught her first stomach virus this week, so she is NOT in the mood for trying out new things right now. We hope it passes soon.
We came back from vacation to visit my brother and his wife last week and we had a blast. I will post some pictures from our trip soon.
Wednesday, June 2, 2010
For those of you familiar with Mexico City, we were actually in the Estado de Mexico, but I dont want to write a geography lesson, so Mexico City is enough location information for our purposes.
In the meantime, while we were in MEX, we hired a contractor to do some home improvement to the house while we were gone. The project included refloating all the walls to make them smooth and repaint... the ENTIRE house. I could not stand the splatter texture and bland wall colors any longer! We decided this was the best time to go on vacation so half the house would be finished and livable by the time we came back. I'll have to post about that later, but redecoration and reorganizing has been one BIG project.
So, back to our trip, yeah?....
The trip was WONDERFUL! I loved seeing and hanging out with everyone. Naturally, when we were about to leave, it felt like it wasn't enough time. Janai loved everyone and everyone loved her! WARNING: Bragging begins here: Janai is a hit almost everywhere we go; she's so talkative, playful and friendly that it's easy for people to fall in love with her; and of course, she loves the attention. End of bragging.
The platter of choice was tamales. We ate tamales EVERY day, and some days, twice in the same day. Adrian probably had more tamales that week than he had his whole life. Of course, we had sopes and huaraches and other things in between, but eating my Tia Raquel's tamales is beyond this world. You would have to taste them to know, but take my word. And my Tia Hermila's tamales our out of this world too. They both make different kinds of tamales, corn leaves vs banana leaves and they are equally delicious in their own right.
Tia Raquel and Tio Fernando hosted a party at their house in our honor, and they hired a Trio to come sing at the party. My parents and aunts/uncles were thrilled because the Trio had an original member of a band that was very popular in their day called Dandys (sp). Afterwards, we danced our hearts away. They served dinner at the beginning of the party and late dinner towards the end of the party. It was great to catch up with Tia Hermila, Araceli (and meet his very cool boyfriend), Claudia and her husband, Sebastian, Elvia, Hector, Paola Sofia, Armando, Maricela, Tio Efren, Roberto and his very nice wife and two kids. Roberto's wife really wants to learn English so was thrilled to hear Adrian and I talk to Janai. Of course, my cousin Lulu, with whom I grew up, and her husband Abel were there too - it was great to see their daughters Abi, who was a toddler the last time I saw her, and Pam who is now married! How time flies! Oh, and my niece Karla, who I mostly remember from she started walking was at the party too with her husband and their baby boy. These young nieces are what make me realize I'm getting old!!! LOL
Adrian was the acclaimed dance partner of all the women at the party. You can easily say they were all waiting their turn to take him out to dance. One of the many things that I love about Adrian is that he loves to dance...doesn't matter what kind of music it is or if he knows how to dance it.
One of the missions I had while I was there was to continue redecorating my Mom's house and start redecorating my Tia Raquel's house. My Mom's house just needs a few more touches to be done, and redecorating the living room and dining room for my Tia R was a success! Everyone is still complementing her home with the changes. I can't take the credit alone... my Dad helped to drill new holes, Adrian helped hold the frames for my Mom, my Tia and myself to decide if we liked it there. Then, Adrian and I refinished a wooden china display to a color that matched better. I'm glad that my Tia allowed me to play with a few ideas in restaging the rooms and that she allowed us to refinish the wooden display because that has set me on a roll to do a lot of projects for the house here in Houston.
I also got to meet Brenda, Marco's significant other, and her Mom and sisters. Brenda is a great gal, and her kids are adorable! Janai was infatuated with her oldest boy, Diego! Janai also clicked really well with the son of one of my childhood friends, Gilberto. Gilberto and his wife Lea have a little boy, Becker, who was so sweet to Janai. Lea showed Janai a song that is possibly the cutest song ever and Janai and I love singing it together. I'll have to share video later.
We also got to hang out with Arita and Herme and Tio Daza, whom have been friends of the family for a looooong time, so they feel like family to us. Well, Arita is family now because, her daughter, Tania is my dear sister in law.
And of course, I can't close without mentioning that it is always so GREAT to catch up with my old best friend, Keren. How I wish we could talk and see each other more frequently. I love her and miss her every day since we moved to the US.
Without further ado, here are some pictures of the party:
Tuesday, June 1, 2010
You might not know this, but Adrian does not sing. The only thing he has ever sang to me is the ABC. Period. He says he cannot sing, but I could not testify to that because I had never been grazed with his singing efforts. Well... you'll have to judge for yourself on the below video. Adrian and Tomas were singing Billie Jean by Michael Jackson and both of them stroke some MJ moves!
My parents got down too! At first, they were all shy, but soon after, you had to fight to get the microphone away from them! You can meet Vikki, Luis and Valeria here:
Janai was part of the choreography for the Billie Jean song. My nosy girl wants to be in everything....just like her Momma!
Fortunately, the camera ran out of battery and we could not record when Aidee and I, and also when my Mom and I, sang songs. But I can assure you that our songs were GRREATTT!!!! Shakira would be ashamed of herself if she heard us sing! LOL!
Unfortunately, Amanda is not featured on these videos b/c she was taking a nap.
Monday, March 15, 2010
While we looked around, I picked up this little guitar just to keep her busy. She LOVES musical toys much more than balls, teddy bears, dolls, etc. If it plays music, she' game for it. She loved this little guitar so much, that she would not let the cashier take the box to scan it. So much that Grandpa put her in the carseat and took her out of the carseat while she continued to hold the box and play with the guitar. So much that we could not take the guitar out of the box until we distracted her long enough after we got home. So much that she just had to lick it!
We are sure enjoying the sunny days!
Tuesday, February 16, 2010
Anyways, here are some recent videos, as I promised:
Her first 3 steps in early November. Excuse my excitement, but I was just so happy.
Children's Festival Nov/14/2009. Janai's first concert: Barney, nonetheless! <= Adrian's favorite!!! LOL
Counting to 10 and more:
Wearing Grandma's (aka Tita and Tati) sandals:
Some words and sounds, part 1:
Some words and sounds, part 2:
Friday, February 12, 2010
Janai is now 19 months old, 16 adjusted. Size wise, she's a big 19 month old. Development-wise, she's somewhere in between. When people ask her age, I just say she's around 1.5 years (saves the explanation!) She's starting to interact with kids and really seems to enjoy it. She started walking late November; she's still kind of clumsy but getting better. She loves running around. We're kind of tired of this weather because she wants to go outside so bad. She is a talker (that's how you know she's my daughter!) and the little queen of the house! She's already thrown a few tantrums, but she's also blowing kisses and waving buh-bye, calling the sounds of some animals, and counts to 10.
Still loves her Sing Along Stage...and anything else with a mirror:
She's still trying to chase me when she sees me with a camera:
I get her to pose while I hide the camera, as soon as she sees the camera, she runs for it...like here:
She managed to delete like 1000 pictures from an SD card when she got a hold of the camera and started pressing buttons and accidentally hit "format card" :-( (sighs!)
Her new thing, dragging purses:
First baseball game. She fell asleep just as we parked and continued asleep for about 30 minutes into the game:
Thursday, February 11, 2010
This above looks different now because the bookcase is where the nightstand used to be located, and the rocking chair is the right by the closet. In all this time, you'd think there'd be more pictures, but I dont have any other pics that show the nursery for now.
Wednesday, July 1, 2009
Friday, June 26, 2009
I got home from work and she woke up from a nap in a very cranky mood. Mom said she was cranky all day. Adrian went to the pharmacy for some oragel and I also gave her some homeopathic teething tablets. After about 15 minutes, she was a different baby. She was even willing to eat bananas! Eating solids for the last two weeks has not been her favorite thing; she's gotten pickier about the texture of the food, probably due to feeling cranky because of the teething pain. We can "hear" the teeth when she bits on a metallic spoon, but we can't see them yet.
Anyway, after Janai got in a better mood and after having some yummy bananas, I asked "Do you want more?". She didn't look like she wanted more, so I shook my head and said "nooooooo?". In reply, she shook her head back at me! Ok, ok... she probably doesnt know she's saying No, but the point is that she's imitating the movement. I was so happy, and I thought it was so cute, so I called Adrian and my parents over to enjoy the view too! I tried to show her how to say "Si", but she said No! LOL!
This is when I tried to get her to nod "Si":
Tuesday, June 16, 2009
We had the EEG test done and everything was great! No epilepsy. She hasn't had any more of those "shaking" events either, so it might have been something related to her inmature nervous system. Boooyy!! Was she mad when they were putting the cables for the EEG!!!! She cried the entire time that the technician was setting them up like if she was being tortured. It was so hard. My Mom had to walk out, and I almost wanted to cry and get us out of there. She was supposed to fall asleep for the test, which I thought would be hard, but after all that crying, she did fall asleep. It took her a little while b/c she still cried for another 15 minutes after the technician stepped out to let me get her to fall asleep. I was exhausted after that appointment, and so was she!
We had a stomach ultrasound on Friday to check on the kidney and liver stones. The kidneys are clear, woohoo! The liver stone might take years to complete vanish. There's a cyst that they had seen in the first ultrasound that is significantly reduced in size. When the doctor came in to re-take some images, we talked about Janai's future Endo appointment, so she took a quick view at Janai's ovaries. She found the left ovary, but couldnt find the right one...at least not in the correct place. She thinks that ovary might be further out than it should be because it might have been the one that contained the cyst. It's all preliminary, but I'm praying to God that it's nothing bad.
Last, we also had another appointment on Friday with Dr Coats. He is so nice, and Janai seemed to love the test. I thought it would be a test like those they did at the NICU for ROP, and I was dreading it, but there were actually no tears involved. She checked out with perfect vision. No more visits to the Eye doctor unless something comes up!!! Woohooo!
The rash on her skin hasn't cleared up. I took her to the Pedi again and she said that it might be a rash due to crawling and the fact that she's rubbing off the natural oils on her skin on the floor. She said to put lotion 6-8 times per day, plus Aquafor ointment at night. We've done it for one week, and it's not better. I'm taking her directly to Texas Childrens to have an actual Derm check it out. Sigh! I just want to go one month with no doctor appointments!!! :-)
And here are more pictures:
This is Janai being a big girl during her ultrasound! You can see Daddy's arm next to her, who went with us to Friday's appointment. It was nice for him to see what goes on during a Doctor's day.
Ready for the meeting:
and she went for the camera again!
Janai just loves her new toy. She sees herself in the mirror and it's laughter non-stop (thanks for the name of the toy Brinson and Lisa!)
Thursday, June 4, 2009
I thought her rash was an allergy to the carpet since she's on the floor a lot more now, but the Pedi thought it was a virus that she caught, and the virus' secretion of toxins gave her a rash. She said that the rash will clear up on its own. I've heard it can take a while for the little bumps to go away. If they dont clear in another week, I guess we're going back to see the doc. :-( I tell ya, we all got sick on Memorial Day weekend. Adrian, my Dad and I got a bad cold, and my Mom had bad stomach pain due to her gastritis. I'm glad we're all recovering. My Mom is still struggling with stomach problems, but I hope they resolve soon.
Tuesday, June 2, 2009
We thought she was crawling in pursuit of one of her favorite toys (an empty Ozarka bottle with a few beans inside...who needs expensive toys, right?), but she was actually in pursuit of the camera. As you can see, her legs can go faster than her arms, but she's getting the hang of it.
Monday, June 1, 2009
Janai was taking a nap when Alvaro arrived to the house to set everything up. Her nap was over about the time that Alvaro got done, so I dressed her and we took pics for about one hour. She was happy the entire time in her own familiar surroundings with all the people she loves, which made the smiles come more abundantly.
Towards the end of the session, we did have a steal a trick from Brinson's Mommy, Lisa, because Janai was getting a bit tired of laughing for us, so I said "asparagus!", and it worked! Janai cracked up every time I said it. Thank you Brinson and Lisa!!!!!
Here's a link to the photos:
Today is 6/1/2009 (2 months after the photo session), and we have yet to decide which will be our print outs, but Adrian and I have finally settled on nine poses. We're making progress! :-)
In other news, Janai officially CRAWLED yesterday! She's not quite a pro at it yet, but she finally did it... just like that...out of the blues! That's the way kids do everything, right? When you least expect it; when you dont have batteries in the iFlip; and when you can't find the camera. Sighs! Well, I eventually found the camera and we were able to brive Janai into doing it again. I will post that video this evening or tomorrow.
Happy June everyone!