Friday, August 5, 2011

Everything's Falling Into Place

God really has a plan and reason for everything. We waited and saved for Pat's assessment with Dr. Dizon and finally had a chance to do it last month. 3 weeks after, we had a conference wherein they will discuss the results of the assessment and their recommendations for intervention too. All of my therapists and her shadow teacher were there too.

Patricia is 4.5 years old already. See below her developmental age on different areas based on the assessment.

Fine-motor area (visual-perceptual-motor, practical and paper pencil tasks): 2.6

Gross-motor area: 4.3

Perceptuo-cognitive area: 2.1

Language Communication area: 1.5

Self-help, Psychomotor, Socialization and Communication: 2.6

I know that there are still lots of delays, still a lot of work to do, but we're happy. We started without knowing what to do or which area to focus on. Now, we have a clear and definite program to follow. I was glad that "my TEAM" was there too. I have a great team. During the conference, they were proactively asking questions, clarifications, and suggestions. I saw in them the genuine concern, care and love for Patricia and their determination to help her maximize her potential. I feel so happy and thankful.

Based on the results, we need to focus on her language and fine motor skills. But of course, bahavior management plays a very important role too. We need to focus on this since she needs to improve her attention span and seating time so she can learn more. Since my Occupational Therapist, Speech Therapist and Shadow teacher are all there, we discussed what to do. Finding a good ABA Therapist is also on my list.

2 days after the conference, I also had an IEP (Individualized Education Program) conference with Pat's School's Head of SPED, Main Classroom Teacher and her Shadow teacher. The timing is just perfect. We discussed the assessment and how we can implement it in the classroom. We had a detailed discussion about it. Now, we have guidelines to follow in school, in her therapies and at home. We have to be consistent and firm. I also plan to meet with "My Team" more often now.

I'm happy with how the things are going. Still a long way to go but at least now, we know what road to follow. No more uncertainties, hesitations and doubts. We're all excited and fired up to do anything and everything for our angel's development. There's no way now, but up. Up you go, our little princess. =)

Finally Seeing the Light

After years of not knowing where to start, what to focus on, how to organize everything, what therapies to try, we finally see the light and it's shining so bright on us. Patricia's diagnosis came when she was 1 year and 9 months, that was almost 3 years ago. She's 4 years and 5 months now. We've tried a lot of approaches, GFCF Diet, Son Rise, ABA, mainstreaming and of course, Speech Therapy and Occupational Therapy.

Now, we finally had her assessed by a psychoeducator and SPED Diagnostician. We've waited for so long for this, saved for so long too. She had her assessment last month. It was a thorough assessment. We were there from 9am until 2pm. She was asked to do table top tasks for about 2 hours. More on fine motor activities like lacing, scooping, blocks, coins, scribbling, zipping, buttoning, puzzles, etc. I was really surprised that she was able to do a lot of things. After 1 hour and a half, she became uneasy already, so we transferred to the playroom, so her gross motor skills can be observed too. She did a marvelous job, jumping, balancing, playing with the ball and drums. After 45 minutes of playing, we returned to the cubicle to try more table top tasks, but she doesn't want to participate anymore and wants to leave. So for the 2 hour interview, we stayed in the playroom. We were interviewed while Patricia played. The interview was also so detailed, no questions or concerns left unturned. Dr. Dizon and Teacher Penny of Child Find did a great job getting all the information from us.

During the interview, we were enlightened by so many positive characteristics of Patricia that were observed by them. The way she shows affection, kissing and hugging me, being able to play with different toys appropriately and also the way she smiles all the time. She's like an angel, that's what they said. They were also surprised when we told them that she loves playgrounds and parties with lots of children. They said that it's unusual for kids like them. At the end of the interview, we felt exhausted, tired, overloaded by information but also blessed and thankful to God for giving Patricia to us.

The time, the wait and the money..they are all worth it. Please read my next blog for the results of the assessment. I hope that parents who'll read this will have an overview of what to expect. Dr. Edilberto Dizon really did a great job with our daughter and we can't wait to implement the year long program already. =)

Saturday, May 28, 2011

New Books I Recommend

I'm here again to share some resources that I think will help moms and other families out there. I've just read three books in one month's time. I just can't stop.

Reading books about autism, families experiencing it..or recovering from it, and experts who have witnessed them themselves, has been one of my passions. I can stay up all night reading them, taking down notes and analyzing our own journey. Here are the books I want to share with you..

Let Me Hear Your Voice, A Family's Triumph Over Autism

This is a very interesting book. The author, has 2 kids in the spectrum who both recovered. Now, who would put down the book after learning this. It made me wonder how they did it, that I ordered the book from Amazon and waited for it for weeks. It was worth it. Now you might be wondering too..

They used Applied Behavior Analysis. The book was written in the 90s and the kids were diagnosed in the 80s, when there were very few interventions they can choose from. ABA was popular then but still very controversial. They combined it with Speech Therapy and Mainstreaming.

It's a very informative book. It can make you cry, smile, worry, and hope. It will inspire you to do more for your child and not stop doing it.

What You Can Do Right Now to Help Your Child with Autism

Here is a different approach, written by Jonathan Levy who had lots of experience working one-on-one with over 800 kids with autism. He used the Son-Rise Program by the Kaufmans.

He has given lots of tips on how to handle your child, what will work and what won't. It also advises us to work with our child in a non distracting environment and to work with enthusiasm. This made me so excited because this is exactly my style. I'm so animated with her that I can get her full attention and make her imitate me. It's an amazing program, but different from ABA.

Ten Things Every Child With Autism Wishes You Knew

This one's written by a mom. A very emotional book but very educational. You'll learn to understand what's going on with your child. What he's experiencing, thinking and feeling. It made me cry knowing that my daughter's having a difficult time and can't tell us. It's the kind of book you want people around your child to read, so they'll understand her even more.

You can see here in my blog that I've attached a video about this. You can watch it too, to have a glimpse of what this book is all about.

There you have it. I hope that you'll have a chance to read those books too. I learned a lot. I'm implementing them now. Just remember that you know your child better than anyone else, you'll know what approach will work for him and what won't.

Try everything..and choose the best. =)

Friday, April 8, 2011

Potty Trained in 7 Days

Patricia is completely potty trained!! I was surprised on how fast she understood the concept. I only started April 1st. Decided to do it again after trying for 3 times already. I was so scared that we'll have a stressful and difficult time with it. But it was actually fun. It was a good decision to wait until she's ready. That she can already sit longer, and that we have all the time to do it at home, consistently since she finished school already. Since the first day, she never had an accident. We started by bringing her to her potty chair every 30 minutes, until she pees successfully. Once she does, we let her see it and asked her to say goodbye. We adjusted it to every 1 hour. And now, she just goes to her chair, put down her undies and make weewee and poopoo on her own. We still need to assist her since the potty chair is not steady enough. Although she still can't communicate when she wants to go, she just goes and sit on her own. That's good enough for us. We're just so amazed. Another milestone for us. Thank God! =)

Sunday, February 27, 2011

Patricia turns 4...and Got My Biggest Nightmare!

Patricia turned 4 years old on February 5, 2011. We had a simple family gathering here at home. She knows that it's her birthday. She was happy and excited the whole day. She blew her candle with the help of her cousins. We sung the birthday song 3 times, since she wants to blow the candles and sing again and again. Our families and relatives show their support, brought food, gifts and most especially positive reinforcements and encouragement. They said that Patricia showed a lot of improvement already. She's a aware of what's happening and the people around her. She even danced in front of them, giving them a show. She wants to be in the middle of the party, she goes where the people are. She had a blast!

The following day, she had a high fever with dry cough. She just wanted to lie down the whole day. We got worried because she still has her birthday party in school. The following day, she's still sick but still went to school just to celebrate. She blew her candle, gave away her loot bags, and received gifts.  She even vomited inside the classroom. We left right away.

We had to give her paracetamol every 4 hours. She hated it. We tried different brands, hoping that she'll like it better but to no avail. Biogesic for Kids worked better compared to others. She can tolerate it better, although it's still a struggle giving it to her. Her dad holds her hands and feet while I give the medicine, several times since she throws it up and refuses to swallow it. We also needed to nebulize her every 6 hours. Now, that was her nightmare. She's so scared of the nebulizer, maybe the sound of the machine or the smoke coming out of it. We tried giving it to her while she's sleeping but she still wakes up, and when she does, it's like a wrestling match. It was a very stressful time for her and for us. We were all so tired every time.

And then, she gave me my biggest nightmare. A week after her birthday, she was still sick. We were still giving her medicine. I had to leave for a lunch meeting. The whole time, her dad didn't give her medicine. They waited for me. As soon as I arrived home, we gave her medicine. She fell asleep. And when she woke up, she didn't like me anymore. She didn't like me near her, touch her, give her milk, and even just the sight of me freaks her out. She only likes her dad. She pushes me out the room. She doesn't want me on the bed. I had to sleep in her play room for a week. It made me cry every night. We analyzed the situation and thought that maybe, she associates me with forcing her to drink medicine and nebulize. So one night, her dad went out with his friends. We were left together, hoping that since she has no choice but me, she'll like me again. But we were so wrong. She had a full blown tantrum. Jumping, crying, slapping herself, banging the door, shouting for her dad, for 3 hours straight. I tried everything, singing, dancing, playing her favorite videos, giving her food, but nothing worked. When she got tired, she lied down the bed, drunk her milk, but I had to be out of her sight. She'd rather be alone than to be with me. It broke my heart. I cried so hard when her dad came. She hates me.

2 days after, her dad needed to attend a wedding. She'd be with me again. I was nervous not knowing what to expect. We went to the mall with her grandma, aunt and cousin. She was okay at first, but after a while, she started looking for her dad. We went outside, she cried, lied down on the floor, kicking and shouting. People were looking at us. We waited for them to come out and went straight to the car. Went to a nice park, thinking that she'd like it better there. She got excited when she saw the fountains, but only for a few minutes, and started crying again. We decided to just leave and go to my parents' place, which is just 5 minutes away. She still cried there looking for her dad. It seems like she doesn't even know me. We waited for her dad there. She was okay when he arrived.

I was so scared that it will go on like that forever. It was a very difficult situation. Her dad can't work because she wants him to be beside her all the time. I can't take care of her because she didn't want to see me. I can't even clean the room. Can't assist her when she vomits. Can't sleep well since she didn't want me on the bed. Her dad can't go anywhere. Her tantrums are like we've never seen before.

But little by little, she improved. First she allowed me on the bed, but not beside her. I stay on the other end of the bed. But just yesterday, she transferred between her dad and me, finally sleeping beside me. I missed her so much. She now plays with me again, laughing, singing and dancing with me again. And we even notice that she responds better now. She talks when we ask her to say something. Her eye contact is even better. I look at it as the rainbow after the storm. She's back. She loves me again. God just gave me a glimpse of what others are experiencing. He gave my husband a chance to feel how I feel sometimes too, hopeless and helpless. The experience made us appreciate each other better, appreciate every moment, and love our daughter even more, when we thought that there's no more left to give. Made us realize that our hearts are over-flowing with love for her, and that it will never be enough nor too much. Our love for her is forever and will never change.