Wednesday, April 8, 2015

Meltdowns, Manny Pacquiao and Adam Levine

April is Autism Awareness Month! I'm so sorry that for the past years, I only get to write at this time. I know I always promise to write more but I just can't find time. And maybe because I post updates on my Facebook page anyway. 

The start of this year has been very difficult for us. Patricia got sick a lot. And the meltdowns started..

For more than a month now, Patricia is having screaming fits like we've never witnessed before. In the beginning, we thought that she just wants to go out of the house or ride the car because when we ask her what she wants, she says "slippers" or "car." But the thing is even when we give in to what she wants, she just continues with her meltdowns, maybe even louder. Patricia used to hit herself when she gets frustrated but very seldom. Since she's getting better in communicating what she wants, it even became less. That's why we were so shocked when she started hitting herself again. And now she even hits us too. She never did that before. Not only hitting, but also kicking and banging her head. And she's really strong. We see stars! I got bruises to show. The screamings are just unbearable! She shouts at the the top of her lungs! We're afraid that we might get reported for child abuse. And these last long, it can go from an hour or throughout the whole night. It happens almost every night too. Sometimes, it happens during the day too. It's exhausting and frustrating!

We're trying to figure out what triggers them but it only confuses us more. Could it be that she's hungry? But she can tell us when she wants to eat or drink something. Is it sensory? Could she be experiencing early puberty and hormones are making her behave differently? Is she too tired? Or too idle? She usually starts crying when she gets sleepy. We're wondering if maybe she doesn't want to sleep. Is she having nightmares? Or worse, is she having silent seizures? Is she in pain? Headache? Tummy ache? Is it behavioral? My husband and I are so bothered. We can't sleep, eat well, our work is disrupted, our schedules are messed up. 

We tried various strategies already. The burrito roll (rolled her with a comforter and rolled a vestibular ball on top of her), this worked well but not all the time. I gave her deep pressure massages using scents that should calm her, worked for just a while. I tried distracting her with her favorite videos, this worked for a few nights. We engage her in heavy work, walking, playing in the playground, swimming. This worked in a way that she gets tired easily and just falls asleep. There were nights when she sleeps easily (very few nights) but due to exhaustion I guess. She wakes up in the middle of the night screaming again. We tried restraining her, but it only made it worse. Ignoring her worked sometimes too but is the most difficult thing to do. Then Adam Levine came along, yup, that guy from Maroon 5! =) We don't know what happened but eversince Patricia heard his song "Lost Stars," she just relaxes. She quiets down and soon after she falls asleep. We play it the whole night. It works like magic. It worked for the past week now. She still meltdowns at night but not the whole night. Thank you Adam!

We're still problematic though. Patricia has always been a very happy child, she still is most of the time. But it breaks our heart seeing her hurting herself or us, being so frustrated crying with lots of tears, having a hard time to calm down. It seems like she can't control herself. And she feels sorry for doing it knowing that she's not supposed to. We dread night time, expecting that she'll explode anytime. We shield ourselves for possible hitting. We make sure she's safe. We're afraid that our neighbors will complain. We're scared that she'll hurt herself so much, it could be dangerous. We're just so scared that it won't stop. We pray that this is just a phase. That it will stop and never come back. We're open for suggestions.. and lots of support, love and prayers. 

This is what Autism is for us. A roller coaster ride of emotions. I thought I'd have to share this too, that it's not all good, it's definitely challenging. But we're ready to face them. Our love for Patricia is so big, no meltdown too big we can't face. We might get knocked out, but we'll definitely get up again and win. All heart! =) 

Sunday, May 11, 2014

Being a Mom: I Thought I Knew It All

HAPPY MOTHER'S DAY! This is one day I always look forward to every year, not only because of the annual pampering my husband never fails to give me but the chance to give thanks and honor to all the wonderful moms in our lives. Now I know they truly deserve all these attention and love!

When I got pregnant, I thought I was so ready. I'm the type of person who lists all things, organizes everything, learns what needs to be learned and reads all the self-help books. I was 30 years old at that time, took care of so many babies, my nephews and nieces, and they love me to death (I know coz they never fail to tell me..) I was ready for the pain, breastfeeding, late nights (or no-sleep-at all-nights!), multitasking and all. I had a pregnancy journal, monitored my pre-natal meds, milk, vaccines and checkups! When Patricia was born, (after a very long 41 weeks) I was prepared to take on the challenges! My pedia was so surprised when I showed her my own chart, her feeding times (I breastfed exclusively for 1 year), her poopoo time (with description of color and consistency), her sleep time, and when she started eating solids, I have a list of what she ate everyday (her dad has lots of allergies, just watching out for possible triggers) I was like that, then add a mom who has wisdom and patience like no other, and a mother-in-law who's an expert with babies and breastfeeding, how can I go wrong?!

Then, she was diagnosed with AUTISM!

I didn't know what hit me! I wasn't prepared for this! I didn't have any idea what this was! I didn't know where to start! The doctor said she might not be able to speak for the rest of her life, might be very dependent on us, might not tolerate many things and situations, and more. We weren't prepared for the tantrums, stims, self-hitting and strange stares from people that we needed to face. Not to mention the expenses too! We needed to use all the money we were saving up for her schooling and spend it on her therapies and all at the age of 2! How can a parent be ever ready for this! She is perfect! She is a happy baby. She looks like an angel. She IS an angel! And this what made motherhood extra special for me.

I knew I'll be a hands-on mom and luckily, I also have a loving husband who's very hands-on too. I knew I will be a mom who tutors her, prepares her food and clothes, etc. What I didn't know was that God has even a bigger and better plan for me. I will not only be her mother, but her teacher, speech pathologist, occupational therapist, nurse, yaya, hairstylist, labandera, and more! I will be her biggest fan and advocate! I will be everything she'll want me to be, her mascot, her clown, her playmate, her friend! I will be what a mother would be... a person with so much unconditional love to give.

I'll never complain and I'll never get tired! Motherhood is definitely the toughest and most rewarding job ever! I wouldn't trade this to any CEO positions out there! Thanks Patricia for the wonderful experiences you've gifted me. Thanks Robert for the love and support with whatever motherly decisions I make. Thanks Mommy Zeng and Mama Grace for all the parenting wisdom and skills you've given me. I'm a blessed mom! Happy Mother's Day!

Wednesday, April 2, 2014

Today is World Autism Awareness Day

It's been a year since my last post! I've been very busy with so many changes in Patricia's schedules, I can't find time to write, not to mention the changes in her sleeping pattern that changes from sleeping at 4am to sleeping early and waking up at 3am..=) But since it's Autism Awareness Month once again, I'm doing my share, in my own little way.

Patricia is now 7 years old, can you believe that? It's been 5 years since she was diagnosed. It's been a roller-coaster ride with so many ups and downs and trials and errors. We learn to accept and embrace that these are parts of our lives. We are now more at ease, comfortable and relaxed in handling the challenges. One thing we learned is not to expect too much from Patricia, her therapists and teachers. They can't perform miracles (but for me, the small miracles they've made are so many I can't thank them enough) and make Patricia a normal child. We all just want her to be happy. That's our primary goal. Others just follow. And the way Patricia is now, we're so grateful. She may still have tantrums as she still has fears (she's still scared of riding the elevator, hearing Mickey Mouse Hotdog song, and lately of the dark.) at least we already know how to handle her. Other than that, we've really come a long way!

She's completely potty trained, oh, except when we go to the mall! She doesn't like going to the mall's comfort rooms because she fears that she'll be seeing an elevator. She can now go grocery shopping with me without riding the cart. Now, the problem I have is when she hoards everything she wants. 6 pcs of Cheetos, 6 pcs of Lay's, 3 bags of Hershey's Kisses, 6 pcs of Chocolait, etc!! Gosh! We need to be rich daddy! She now knows how to remove her clothes, which means she can remove it by herself and go take a bath in the bathroom by herself too, which happens at around 3-4 times a day!! Waaaahhh! She can also say what food she wants to eat. Her favorite words (which she says very clearly), "Jollibee" "spaghetti" "McDo" "cheese" (for cheeseburger, she only eats the cheese) "french fries" "KFC" "pizza"... no wonder she's now 80 lbs!! The clothes we buy for her are for 16 years olds. She can now borrow clothes from me. Hahaha!

At this point in our lives, we want nothing more than to give her a happy, enjoyable, comfortable and healthy life. A positive environment without too much pressure on her to act normal. Where she can be herself, enjoy life and feel loved. In my first posts when she was first diagnosed, I said I'll squeeze the autism out of her in any way I can, now what I want is just to give her overflowing love embracing her and her autism. And we won't stop until our last breath.

Happy Autism Awareness Month!

Tuesday, April 23, 2013

It's Autism Awareness Month! We'll be on TV!

Today, we had an opportunity to share our journey to more people as SolarTV has invited us to be featured on their show "MedTalk" in celebration of the Autism Awareness Month. We are so excited when we received the call yesterday as this has always been our family's advocacy. It's amazing how they were able to contact us as they only saw this blog and was inspired and had to reach us. They called my husband, Robert's previous office in DTI to have our contact information. I was a bit nervous at first and wasn't sure if I can do this. But as I talked to them, I knew that this will be a great opportunity for us. This is for Patricia, for other angels and for fellow parents. We were excited. The world will see how proud we are of our angel and that her diagnosis is not the end of the world but just a beginning of a challenging and rewarding journey.

Please don't mind our messy house, we didn't have time to clean as we were just told the day before. I hope I was able to answer the questions well, we weren't given the questions beforehand and was asked impromptu. They also followed Patricia in her Speech Therapy.

I hope that we'll reach out to more people through this and inspire more parents. Just believe that there's a light at the end of the dark tunnel. Don't ever give up.

Watch us in MedTalk in SolarTv, April 23, 10-10:30pm.

Friday, January 25, 2013

Gymboree's Answer to Our Letter

Dear Mr. and Mrs. Dulay,

We received your letter today about your experience yesterday at Gymboree Magnolia.
We were saddened to hear that this incident bothered your family.  At Gymboree, we hold children in the highest regard and the mere thought of disappointing a child is very sad for us.

We are in agreement about the Gymboree philosophy and understand that we provide a positive environment for all young children that we always strive to achieve in our centers.  We train our teachers and staff and have the highest standards of behavior for everyone associated with our brand. It appears that we missed the mark this day, and for that I can only sincerely apologize for the experience that your family had at our site.

The Gymboree playscape is meant only for little children and for the safety of all children, we do try to cap the age of our playscape at the maximum of 60 months, whether a child has disability or not, since our playscape is not designed for kids above this age.  We usually (and as you mentioned did) offer the ArtsPlay experience in our classrooms which is an alternative we do offer for kids 5 and above.

We also sincerely apologize for the misunderstanding of our website regarding the age range of 0-5 year old for the playfloor which is actually up to 60 months old, and not beyond.  We will take immediate steps to ensure this is more clearly stated.

Once again, we are very sorry for the experience and we, ourselves, wish we could allow older children, too. We cannot take away her disappointment so please accept our small token of apology for your daughter and also as a token of thanks for bringing your child to Gymboree from an early age.  Our Bubble oodles will hopefully help her continue to experience Gymboree at your home.  Please let us know where we can deliver this for Patricia.

Please forgive us and know that we are moving forward to ensure that we show more compassion and empathy for disappointed children, and your child’s happiness is all that I can hope for.   Thank you for taking the time in providing prompt feedback.

Gymboree Philippines Management

This was sent to us by Ann Tan at 8:26pm tonight. We are glad that they read our letter and replied. We forgive them, but that's not enough. We just want them to re-train their staff and discuss Autism and what they'll do if this happens again. This doesn't happen everyday anyway.

This week is coincidentally the National Autism Awareness Week, and I hope that establishments especially those catering to kids be aware of the condition and be trained to be compassionate and understanding to kids with special needs and their families. That's all we were asking, nothing more.
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