Thursday, September 23, 2010

Patricia @ 3years and 7 months

It's been 7 months since my last post. So many things happened. Some good, some bad, but thank God they're mostly good. Patricia has been having her Speech Therapy once a week, since there's no available additional schedule yet. She's also in her junior nursery class now in Kinderhaus. She's still having her once a week Occupational Therapy sessions. We stopped her GFCF diet 6 months ago. It was accidental and unintentional. We had to stay in the province for 2 months to campaign for her grandfather, and since there's no way that we can get GFCF supplies there, we were forced to give her non-GFCF food. We observed her and nothing has changed except that she became more hyperactive. Maybe it's because she can eat everything she likes and in effect she eats more rice and pasta. She gained weight too. She also became healthier. She never became sick since then. I'm not discouraging parents to try GFCF diet, because it really doesn't work the same on everyone. At least I can say that we at least tried, for 1 year and 3 months. I'm still glad we did it.

Patricia has improved a lot since my last post. Finally, some words!! We were so shocked when on our way home from her speech therapy, she got thirsty. And when we gave her the juice and asked her to show the gesture for "open", she said the word clearly. We were in the car then, my husband and I almost cried. We made her say it several times, she did. It was one of the happiest moments for us. That was 4 months ago. Now she can say few words, like open, blow, mommy, daddy, give, bye. It's still not so clear and consistent. Sometimes we still had to prompt her. Like saying "bar.." and she says "..ney" or "el.." and she says "" She can count, but only numbers 3,4,5,8,9 and 10. And that still depends on her mood. Well, that's good enough for us. Slowly but surely. She also socializes more now. She even hugs her classmates a lot. She plays with them and even holds their hands. She also sits longer now. She still doesn't like to glue but can tolerate it more now. Oh, and how she eats! Her teachers are so amazed because she eats her food with gusto, and with almost no assistance. She also sings and follows the movements better now. Her attention has improved too. According to her teachers and therapists, she's their most improved student, and we couldn't be prouder.

There were still some low times. I think that will always be part of it. She's still scared of the elevators, so we're forced to use the stairs all the time. She freaks out when she sees it, running away or just sits on the floor refusing to move. There was a time that she was also scared of the escalator, which she used to love. We had to go up and down many times to get her used to it again. She's addicted to her Barney videos nowadays. When she wakes up, comes back from school, she wants to watch it right away. And for a time, she loves to press the pause/play button all throughout the video. Good thing that now, she does that only to some parts she doesn't like. She only selects the people that she wants to interact with. She has her favorite persons and for the others, she ignores. But other than that, she's a happy child. She still has tantrums but are now rare. When she's mad or frustrated, she cries or shouts, claps her hands and stomps her feet. I'm thankful that she doesn't hurt herself and others.

There's still a long way to go. We're so proud of our baby. We know that she also gets stressed and tired sometimes but she's trying. We know she's trying really hard. And that makes us really happy. Praise God.

Friday, March 26, 2010

We Love Kinderhaus

Looking for a good school for Patricia was also a challenge. I guess we visited around 15 schools. Some are listed under schools accepting children with special needs. But still, they gave me all the excuses not to accept my little girl. One school said that they only accept children 2 years of age, Patricia was 1 year and 11 months at that time. Isn't that ridiculous? Some said she's too young. Some said she needs to undergo therapy first before they accept her. One would accept her but the tuition fee would kill us. It's like bringing a child to a medical school. That's how expensive that is. It was frustrating. And then God sent me to Kinderhaus.

It was a blessing in disguise when I read an article about a girl with language delays. Her mom mentioned her school and how helpful they have been. I immediately searched for it. And though it's not within our target area, I convinced my husband to at least visit the school. We were amazed at how warm and entertaining they were. They answered all my questions well. For the first time after so many school visits, I felt welcome. They have a big outdoor playground for the kids, SPED room and spacious classrooms. They also offer Occupational Therapy sessions. They also have a waiting area for the nannies and mommies. I knew right away that Patricia will be okay here. And one more bonus, it's a catholic school. My family couldn't ask for more.

We enrolled Patricia in their summer program. It lasted only for a month but Patricia adapted well. She enjoyed everyday. She likes seeing her classmates. She loved the sandbox so much, her teachers had to cover it. She participates during circle time. She enjoys recess..=) And most of all, she loves the playground. She has a shadow teacher who assists her during activities.

Now, Patricia has just finished her toddlers program and will be moving up to junior nursery. It's been a year. Time really flies so fast. There were also some highs and lows in terms of Patricia's behavior in school. But I can proudly say that there are more highs than lows, and I'm already ok with that. Her teachers coordinate with us regularly. They talk to me when they observe something new, or when they have some concerns, either with Patricia or her shadow teacher. I feel so blessed.

Thank you Kinderhaus for being one with us in helping Patricia be better. She has improved a lot since that first day. She has become a happier and a more playful child. Now, we're looking forward to another year with you. See you.

Tuesday, March 9, 2010

My Support Group

Besides my family and closest friends, there are still other people who walk with me through this journey. They are my support group. They are the other parents who are in the same situation as me. Not really the same because as I said, no two cases are truly the same. The same in the sense that we're going through similar challenges everyday. The roller coaster ride of emotions. Joy, guilt, anger, frustrations, celebrations, and lots of other things a mom can feel. Name it, we feel it. It helps a lot to know that we're not alone in this world. It helps to have other people you can talk to who knows exactly what you're going through. That's why I love going to Patricia's school and therapies. I love talking to other moms. Conversing without inhibitions, hesitations and guilt feeling. In this blog, I will give special mention to 2 exceptional moms I know.

Kettie is AJ's mom. And mom of Patricia's classmate Anna. I learned a lot from her. She shares everything she knows. She's studying SPED which makes her a great adviser when it comes to teaching our child. She also shares to us good books that can help us along the way and therapy centers that we might need. It's from her that I learned about IEP (Individualized Education Plan). It's through her own experiences that I learn that there will be more challenges in the future, that it's going to be a continuing process. Because of that, I'm preparing myself. That's a big help.

Janet is Keandre's mom. I admire her a lot. She's a cool mom. When you see her, she seems to be so happy and in control. But among the three of us, she's the emotional one. When she starts telling stories, we can't help but cry with her. She tells her stories with such passion. She's actually the first mom that I talked to after Patricia's diagnosis. We met in one of the therapy centers where our children are having sessions. After that, I never stopped texting her. We share everything. The latest researches, therapy centers, schools, teachers and even food. It's as if we're together in every step that we take.She tries everything and does everything for her child. She's a strong woman with a soft and kind heart. Truly admirable.

When the three of us are together, we share never ending stories of our experiences and undying love for our children. We can go on and on and on. Even when we talk about the same things almost everyday, it gives us strength and hope and joy. As we see our children coming out of their classrooms, the smiles that they bring to our faces, it's priceless. We wouldn't trade it for anything. And I wouldn't trade this friendship that I have with this two exceptional moms. =)

Monday, March 8, 2010

Patricia Today - March 8, 2010

Patricia turned 3 years and 1 month old last Friday, March 5. They say that children can absorb and pick up new information faster and better from 0-3 years old, and slows down as they grow older. That worries me. Patricia has been undergoing lots of therapies but not yet enough. I got a call this morning from Speech Clinic, informing us that they already have a slot for Patricia. Thank God, after 6 months of waiting, finally! She'll have her assessment tomorrow.

Patricia is still a happy child, still manageable. She has her tantrums but not too much. We can still handle them. However, now that she's older, she has also become stronger and more persistent. It also seems that she wants to express herself more which also frustrates her more. When she gets frustrated, she shouts or cries or stomps her feet. Good thing she doesn't have violent tendencies, she doesn't hurt us or herself. It can only be frustrating for us too when we can't figure out what she wants. It takes lots of patience and analysis.=)
She has few words now. She can say "mama" or "mom", "papa" or "da", "wow" when she gets excited, "yumyum" when she likes the food, "boo" for blue and "red" when she sees colors, even if it doesn't match, "wa" for one "woo" for two and "ey" for eight, everytime she sees numbers. When she sees Dora and when we say "swiper no swiping", she says "oh man!" It's super cute! She also says "yehey!" while clapping. Only few words but it makes us happy already.

She's also independent. When she likes milk, she gives her bottle and can of milk. When she's already hungry, she pulls her chair and sits on her own, or tiptoes to check if we already have food on the table. She eats on her own, using her hands most of the time, since she easily gets frustrated when she can't get enough on her spoon. She drinks on her own too. When she sees something that she likes, she tries to get it on her own, only comes to us when she realizes she can't do it.

She also plays appropriately now. She loves playing in playgrounds, even when there are lots of children. She likes climbing and jumping and running. She likes slides and see saws and swings. She also likes balls. She seems normal around other kids. The only thing you'll notice is that she doesn't speak to them. She smiles or holds their hands but with no words.

Oh, how she likes music! She sings all the time and she's in tune. You'll know what song she's singing eventhough it has different lyrics. She also has good imitation. She imitates the actions well. We get surprised sometimes, because she's very observant, she will just look first. The next time you sing with her, she can do the actions on her own.

The mall is her favorite place in the world. She jumps with excitement everytime we enter one. May it be Trinoma or Ever Gotesco, it doesn't matter. That's her reward when she's good in school. She also likes the beach. She can stay in the water for hours and not complain. She complains only when we try to get her out of the water.

These are just little things but they make us happy already. Parents with normal kids might say that their child can do more that that. It's just normal for them. But for us, these are big deals. We celebrate them. We cry with happiness when we discover something new. No matter how small. We appreciate small things. That's our reward for being parents to such special angels.

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.