Friday, February 26, 2010

Patricia's Angels

On my last blog, I mentioned the challenges that we have to face. I also mentioned the blessings and the angels that God has sent us. People say that having a special child is a blessing. That it brings luck to the family. I say it brings more than just luck but commitment, unity, genuine concern and unconditional love. It's overwhelming. It overshadows the challenges we're facing. Our family has become closer and our bond is stronger than ever. We all have a common goal, to make Patricia better. We love her as she is now, we just want to prepare her for much more challenges she'll face when she grows up. We have so many people to thank for, angels who help us along the way.

We would like to thank our Dulay family. Her lolo gov for patiently playing with her and consistently looking for breakthroughs in Autism treatments. Her lola Grace for cooking special meals for her and for taking care of her when we're not around. Her Ninang Hanna and Tito Boyet, who never stopped researching about Pat's condition, and food she can eat. Being doctors, they use all the connections they have to help.And baby Brayden for sharing his toys with her.=)  Her Ninong Sadri and Tita Tina who spoil her with gifts. And for Tito Juls and Tita Nina for not failing to give her attention whenever she's around. Thanks guys. Special mention to our Tita Kathy, Tito Rey, and Lola Feling, even though they're far from us, they support us all the way.They make us feel that we're not alone in this. And to Mama Lola for the love and support. Thank you so much.

To my Alanon family, thanks for all the moral and financial support. Lolo dadad for always putting a smile on Patricia's face just by calling her name. Lola Zeng for always making us feel secure that there will always be a way. For Ninong Allen for always being there when we need help. For Uncle Timmy and Tita Jen for playing songs and videos for her when we visit, and for helping me prepare her birthdays. Her cousins, Ate Stephanie and Kuya Calvin for patiently playing with her even when she's not in the mood. They won't leave her alone. Ninang Tessie and family, thanks so much for the help and especially the prayers. We owe you a lot. To my Titos and Titas, thanks so much for the prayers and words of encouragement.

God also sent us the Protacio Family, Ninong Paolo and Tita Ciara. They offered their help without us asking. Only few people would do that and we are deeply touched. We will forever treasure your friendship. Your help has come a long way, we can't thank you enough.

For the ERES SPED teachers, thank you for sharing your knowledge with me. I believe that God made you an instrument to prepare me for this. Who would've thought that you would play an important role in my family life. You saw me grow up. I was only 13 years old when we gave our first Christmas party for the children.

And for all the parents I meet everyday. I've learned so much from you. To Janet and Kettie, I always look forward to talking to you and comparing notes with you. Thanks for being generous with your knowledge and experiences.

I know that the list can go on forever. I can't thank these people enough. More than anything else, I would like to thank you for the prayers and for giving us hope that everything will be okay. You make life easier for us, especially for Patricia. Thank you from the bottom of our hearts.

Thursday, February 25, 2010

Challenges We have to Face

Raising a child is already hard, raising a child with special needs is much more difficult in so many aspects. But inspite of all the challenges, it can also be very rewarding, challenging and exciting. I'll enumerate some of the challenges we have to face in our daily lives.

1. Family's Roles and Involvements

     I mentioned this because this was actually one of the first problems we had to address. Patricia was diagnosed at a very young age, she was still a baby. Informing the family about her condition was a challenge already. Most of them are in denial. As long as we're in denial, it will be very hard to move on. The key to the success of any intervention is consistency. So we have to be consistent with the program's demands. We have to follow a certain schedule, some rules and behaviors. Ignoring her negative behaviors or manipulating behaviors can be challenging. Like when she's crying or shouting, we have to ignore it so that she won't do it just to get our attention or to manipulate. That can be challenging especially for her grandparents......and dad :)

2. GFCF Diet

     Not giving her food with milk or with wheat is one of the most challenging. We were lucky because soy and eggs are okay with her. And her grandmother can prepare GFCF food really well. It's just so heartbreaking when we are all eating pizza or cake, and she wants it but we can't give her. Any trace of gluten and casein in her food will bring us back to zero. When we go out, we also have to bring her her own food. In school, we have to be very cautious coz she might get food from her classmates. During parties, she can't eat the food prepared, and it's hard to explain to them why. We sometimes feel like giving up. Aside from it becoming hard, it's also very expensive. But we have to do it, anything that can help her, we should at least try. We read so many books and testimonials saying that this diet cured their child. I won't forgive myself if we won't at least try.

3. Financial Challenges

     This will definitely be one of the top 3, if not the top. It can be very frustrating for us that we can't give her everything that we want for her, or everything we thought she'll need to be okay. I had to resign from work so I can focus on her more. Now that I don't have income aside from gigs and weddings on the side, it was very very difficult. We had to pay for her occupational therapy sessions, P500 per hour, her ABA sessions, P500 per 2 hours, her shadow teacher, P500 per class, her school, P6,000 per month and her special diet. Not to mention her regular visits to her doctor and her regular assessments, which can cost P2,000 each time. We also need to bring her to play areas and expose her to different places. We also don't know how we can survive it but God has his own ways. We're always surprised with the blessings He showers us..and the angels that He gives us.

4. Emotional Stress

     Children with autism are unique and has their own ways. Not all of them are the same. Patricia is a happy child, easy for me to handle. But there are times, that even us parents will be tested. Patricia has unusual fears, like she's afraid of some TV advertisements, some music and going in an elevator. She runs to us, or cries or clings to us. In public places, she cries and really tries to find a way when she wants something. She's very persistent. We're just lucky that we can divert her attention easily. When we go to new places, like a friend's house, sometimes she doesn't like to come in. We had to force her. Children with autism have a hard time adjusting to new surroundings. When she cries in parties when she's supposed to have fun like the other children, it can be embarrassing for us. Some people will look at us as if we didn't raise our daughter well. It will really test your patience, perseverance and faith. Prayers helped a lot. We just need to understand that these children can't express what they feel. If it's hard for us, it's even harder for them. We'll be the one to adjust for them and not the other way around.

God gave Patricia to us for a reason. We are special parents for God has given us a special child. I can't be thankful enough that she was given to us and not to other parents. I'm a stronger person now because of her and I'm ready to face any challenges that come with her. Bring it on...=)

Tuesday, February 23, 2010

Where Shall We Start

The first problem we had to deal after the diagnosis was knowing how and where to start. I had no choice but to resign from my work, teaching english online. I know it will be hard to teach other people when I know that my daughter needs me more. Fortunately, they allowed me to resign right away. I immediately immersed myself in the computer searching for the next big step we need to take. The first thing I wanted was to enroll Patricia in a regular preschool. 10 days after, she was already starting. Thanks to my sister in law for allowing us to enroll even though it's already the middle of the school year. After a month, Patricia started her Occupational Therapy, 3 times a week, 1 hour per session. We also started her with a special diet that is said to help in her development. It's gluten-free and casein-free diet. It means she can't eat anything that has wheat and milk. That's another challenge we had to face. I'll need another blog to discuss it. Anyway, the hardest part for us during this part was leaving her in school and with her therapist, hearing her cry and cry. It was a struggle. They say that she'll be like that for a month. It was torture for the family. She was still a baby, barely 2 years old. They said we had to ignore it since it's her way of manipulating the people around her, by crying. True enough, after a while, she stopped crying and started performing. We're so happy. But we still have to do more. If you'll look in the net, you'll be so confused with so many therapies that you'll find, claiming that they can cure Autism. One of the most accepted is Applied Behavior Analysis. I called up all the therapy centers trying to find one. And after waiting for 2 months, we finally had a slot. My daughter started immediately, twice a week, 2 hours per session. We saw the improvement right away. Although there were still no words yet, she can now express herself better. The following school year, we transferred her to a regular school accepting children with special needs. Her first school was okay but her classmates are older than her, she was only 1 year and 10 months then, but her classmates are already 3-4 years old. In her new school, her classmates are of the same age as hers. She adjusted well. They required a shadow teacher for her. Someone who'll assist and manage her while in class. She's doing well. She still cries once in a while, but most of the time, she enjoys her school. Right now, we're waiting for a slot for her Speech Therapy. It's unbelievable. We've been waiting for 6 months now. That will be our next step and we'll be right on track. Go, go, go, Patricia! Just keep holding on. =) Mommy and daddy will always be here.

Saturday, February 20, 2010

Patricia before Autism

Patricia was born via caesarian section on February 5, 2007. She was a healthy 7 lb. bouncing baby girl. She was very easy to take care of. I didn't have a hard time even though I haven't recovered from my operation yet. I only had a hard time breastfeeding her since she didn't know how to suck correctly yet. It was frustrating. She had reflux, she vomits everything she eats when she cries, coughs a little or even for no reason at all, which makes it even more frustrating. At 1 month old, she was given Motilium for her reflux. It helped but only a little. Other than that, she was healthy. I breastfed her for almost a year, exclusively for 6 months. Her weight and height is above average, always at 95 percentile. She reached her milestones on time. She took all her vaccinations as scheduled. We had no worries. Our pediatrician said that she was perfectly healthy. One time, she even said that she's advanced for her age when Patricia waved goodbye to her at 6 months. She can do lots of tricks. She can swing her legs, sing "Twinkle, Twinkle" with actions, she can imitate Kris Aquino's "Deal or NoDeal" and the "Singing Bee" gestures, she can do "Hep Hep Hooray", she can sing in tune, "close-open" her hands, she dances, she makes poses in front of the mirror, and she can say "mama" and "papa". And then at 1 year and 5 months, they're all gone. It's as if a switch was turned off. She wasn't looking when we call her name, especially when she's doing something. At first my sister in law who's a doctor thought that there was something wrong with her hearing. But we were sure that it's ok. She knew that Patricia should have words already at that age. But then, she's still a baby, it can come later. We thought that maybe, she just didn't want to do her tricks anymore. But those were our only concerns. Other than that, she was okay. She was still a happy baby. What happened to her? Was it triggered by something? Did she just forget everything that I taught her? Was it really because of the vaccines? She had 24 shots already when she was diagnosed. Maybe, but that's not proven yet. This is why autism is a very mysterious disorder. I feel like it stole my baby girl away. But I won't stop until I crush the autism out of her.. I will never stop...

Friday, February 19, 2010

Dealing with the Truth

It was difficult to know that your child has an illness, what more a lifelong disorder that they say has no cure. It was devastating. What is more difficult for us is not knowing what caused it. They say it can be genetics, but even that is not proven yet. It can be caused by some vaccines, they say that a baby's body can't tolerate such a big amount of chemicals, thus, causing the brain to develop slower. It can also be caused by too much TV exposure. No one can tell. It's doubly hard for us parents since we don't know if it's because of something we did or didn't do. Was it because of the few alcoholic drinks that I had when I wasn't aware of my pregnancy yet? Didn't I take enough pre-natal vitamins when I was pregnant? Was it because we bought her lots of educational videos thinking that it will make her smarter? What we felt was a combination of guilt, anger and fear. Surprisingly, when I heard the diagnosis straight from our doctor, I didn't cry. I was fired up to know everything I need to know, what to do to help, where to start, and find the cure. I remember crying just once, when I told my mom about it, because I know she understands how I feel. I know I need to be strong for my husband, for the entire family and especially for Patricia. I wasted no time. I'm thankful to God for giving me strength during that time. I could've stayed inside my room and cried all day, but He didn't allow me to do that. I was on my feet right away. Praise God. My family and my husband's family also helped us a lot during this dark time. All the grandparents was in denial at first, saying that there's nothing wrong with their granddaughter. She's just delayed like most of her cousins, but they accepted it eventually. Now all of us is in a quest to find the best therapy and cure for our little princess. And we know it will come. In God's perfect time, we know it will happen.

Wednesday, February 17, 2010

My Daughter has Autism

She was 1 year and 9 months old when she was diagnosed with autism. October 28, 2008 to be exact. We brought her to a Developmental Pediatrician 3 days after somebody told us that he noticed that Patricia has signs of autism.
We attended a Holloween party. We were invited by my sister in law, she owns a preschool. Patricia was very excited when she entered the place, but got uneasy when the other children entered. We only stayed there for less than an hour. That's why we were furious when someone from the party said that Patricia might have autism. How can she say that when we were there for such a short time only? And we have no idea what autism is. But we were bothered and furious, and so we consulted the web about the signs and symptoms. She has some but not all. She flaps, she doesn't respond when we call her name, and she has fleeting eye contact. Other than that, we thought everything's just fine. Only when we consulted the doctor that we realized that there were some signs that we overlooked. One of which is her lack of language. We thought she's just a little delayed like her cousins, but we were wrong. She's afraid of some advertisements on TV. She likes looking at spinning things. She grabs our hands when she wants something. She doesn't point. We were shocked.
But the good thing is, the earlier the intervention, the bigger chance that the child can cope. We're still lucky. God is still good. We thank our sister in law for having the courage to tell us. It saved us a lot of time. It's been more than a year now, since that day.We've come a long way, but it's a continuous process, there's more to come. It is truly a journey, not only for our little angel, but for all of us. I want to share it to all the moms and families out there. Join us as we continue our journey.
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