We tend to blog more about the miracles and victories in Ka'ēo Jr's journey with autism, but with the light there are also moments of darkness we are challenged to face as well. The symbol for autism is the puzzle piece. It is a perfect symbol being that this disorder is quite complicated and it's cause and routes to recovery are just as complex and mysterious for each individual affected.
We have spent the past 4.5 years working relentlessly and have spent thousands of dollars trying to find the treatments, therapies and interventions that will hopefully help our son. We have seen miracles unfold indeed...but we have also experienced many, many moments of darkness and had to search really hard to find the light again.
We have heard from veteran parents in the community that as the child gets older, it gets harder. Ka'ēo Jr was diagnosed when he was 2 and tiny. Now he is 6.5 and is as tall as my chest. I'm a short little asian gal so it won't take much longer for my special angel tower over me.
I have also heard about kids with autism being aggressive, violent, destructive. I heard and have seen videos of them being self-injurious and doing things like bang their heads. Ka'ēo Jr didn't do these things when he was little. He was just very incapsulated in his own world. UNREACHABLE. We worked through that with our Son-Rise program where we focused on building a loving relationship with him and now he has a desire to be with people often. He has language and makes eye contact and has a desire to interact with us. All miracles.
In the past several months, however, we have also seen behaviors like punching his head, throwing things, random screaming while taking his clothes off and intense lashing out develop. In those moments, I remind myself that this is an opportunity to work on choosing my inner peace...and to pray even harder. To find the light in the darkness before me.
This morning we had many moments like these. I watched him as he punched his head, take his clothes off, cry out and scream intensely. For a moment I choose to feel helpless. Then I reminded myself that it didn't serve me at all to feel this way....to choose to feel miserable. I then decided to look to God. I heard a voice whisper "Rise Up...I am with you." And so I did.
I drove him to school in tears...again, asking God "why?" God reminded me to TRUST. Don't lose faith...don't lose hope. And guess what? When we got to school, my boy jumped out of the car with a smile and gave me a spontaneous hug and kiss. He held my hand tightly and hugged my arm as I walked him to meet his one-on-one. He said "cheese" and looked at me with a smile when I took this picture of him in the office as we waited for her (something he rarely does). I gave him a kiss and told him I loved him. He looked back at me with an even bigger smile and told me he loved me too. When she came to meet him, he went to her easily. He smiled at me again as he waved goodbye and took her hand as they walked to class. Again, all miracles.
The lesson? God is with us. Choose to see the blessings and not the darkness. My son and his autism give me that opportunity every single day.
Trust.
Love.
Hope.
And believe in miracles.
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Earlier today, I went into Ka'eo Jr's Son-Rise Program Playroom to clean up before our next volunteer came to play with Ka'eo Jr. I noticed Ka'eo Jr had scattered some of his board books in the middle of the floor. I gathered them together and noticed they didn't close tight anymore because he'd bent some of the pages. When I picked up these books, I noticed the books looked like the one in this photo...just another board book that Ka'eo Jr had started to "destroy" bending the pages this way and that. "Oh well...they're his books..." I thought briefly as I put them back up on the shelf. Later today, our volunteer came out of his session with Ka'eo Jr and said, "wow, it's so cool how he bends his books like that!" I looked at him with a puzzled face..."what do you mean?" "I mean the way he bends every page to make that pattern," he said. Then he handed me a Blue's Clues board book and said, "I noticed he bends them, and then looks at them from the side like this." I held up the book and I was blown away by the amazing beauty Ka'eo Jr had created with this simple children's book! It looked like so many beautiful things in the world: a peacock, a Japanese fan, the light reflecting in it looked like a star, even a beautiful palace... I took it to the window to take a picture of it and then I noticed even more beauty coming from its sillouette against the Hawaiian evening sky. Our angel is such a miracle. He sees and experiences our world in such a different than we do. We are so blessed to have him in our lives. I'm grateful that we, and everyone else on Team Ka'eo Jr, has learned to look at him and everything he does through "Son-Rise Eyes" meaning without assumptions or judgements, with open minds and full of love. Thanks to God, Ka'eo Jr is our greatest teacher. This Easter, we remembered that Christ died on the cross for our sins and rose again to join our Father in Heaven. We are so humbled and grateful for God’s blessings in our lives. Ka’eo Jr is truly an angel sent to us to save our family. He’s taught us so many amazing lessons.
For years after he was “supposed to”, Ka’eo Jr didn’t speak a single word…he couldn’t ever sit still…he wouldn’t look into the camera for any length of time…his skin was so sensitive that he couldn’t tolerate wearing anything on his head…he spent 99% of his days aloof, in his own world, disconnected from us in our world… There is no word that describes his journey better than a “MIRACLE”…in this video Ka’eo Jr is present, he’s sitting with us, he’s looking at the camera, he’s wearing bunny ears, he’s responsive to our requests, and he even says “Happy Easter!” Not only have our lives been blessed by Ka’eo’s amazing journey, but God has also given us 2 more angels, Koali’i and Maraya. GOD IS GOOD, ALL THE TIME…and…ALL THE TIME, GOD IS GOOD. Today was filled with small amazing miracles!!! Ka'ēo Jr said "playground" so we went running hand in hand and chased birds TOGETHER! Later he said "walk" to me and we went on a walk TOGETHER and chased geckos...and then EACH OTHER!Three times he looked at me with a smile and said "tickle mommy" as we walked hand in hand on this gorgeous Hawaiian spring day! THREE TIMES!!! He responded to EVERYTHING I said to him. Then...when we went back to the house he immediately pulled me into his playroom and asked me to play hide and seek with him which we played for over 20 minutes! TWENTY MINUTES!!! And get this folks...when I said it was his turn to hide...HE DID IT!!!!
These accomplishments may seem small to most...but they are huge to me because they come from a child who was soooooo UNREACHABLE a few years ago. A child who appeared deaf and blind and stuck in his own world. A child who pushed people away and could not say a single word. And now...wow. I am speechless. Thank you Jesus for every small miracle I witnessed with my special angel today. For what seemed like forever Ka'ēo Jr had the hardest time naming the people around him. People with autism are described as being "being in their own world" and seeking predictability and sameness. They are drawn to objects rather than people because objects are controllable and people are not. My son could communicate his wants and label objects and things in a book easily. He just could not label people. We tried making posters and albums and photo cards in the past but he just could not get the concept that people had names.
I finally let go of being attached to him doing this. I never let go of my want for this but decided it was okay if he never did it...that I knew he loved me and knew that I was his mommy even if he never called me "mommy." I believe in him and held on to the dream that someday...when he was ready...he'd do it. Yesterday my dream came true! He asked for me 3 times yesterday!!!! THREE TIMES!!!His Auntie Anna, Uncle Danny and his Daddy all told me he asked for me by saying "Mommy" on his own!!! Then when I went in his playroom to say goodnight he looked at me and said "Mommy" all on his own!!!! No prompting or requesting! I then brought down some pictures and taped them to the wall and he named every person!!! "Anna, Daddy, Koa, Mommy, Kathleen ("Katy"), Danny ("Annie" - lol)" and then smiled at me...I pointed to my face and he said "MOMMY!!!" then ran into my arms giggling!! I cheered and gave him a zillion kisses!!!! Wow. He did it!!! Sigh... THANK. YOU. GOD!!! Ka'ēo Jr has come a long way when it comes to his awareness of the people around him. When his little brother Koa was born he was so aloof that he didn't even acknowledge his baby brother's existence! It wasn't until Koa was 20 months old that Ka'ēo Jr began to "see" him. Now fast forward to today...here he is kissing his baby sister Maraya, helping me change her diaper (he hands me a diaper from the drawer and opens it up...and even identifies the Sesame Street characters on them)...and then when asked - he identifies his eyes and her nose too! So sweet...
I know...I know...my son is gonna be so mad at mommy someday when he's older and finds out I posted a picture of him on sitting on the potty...but this HUGE HUGE HUGE folks!!!! Autism parents out there understand how challenging it can be to teach simple basic things like encouraging their child to look at them and talk...so you can imagine how challenging it can be to potty train a child with autism! Last night Ka'ēo Jr SELF-INITIATED going poop in potty!!! Then he did it again this morning!!! Not only am I overjoyed at how often he is pooping (ASD parents again understand what a HUGE deal that in itself is!!!) but I mean WOW --- He looked me in the eyes, said "potty...poo poo", pulled my hand to go with him to the bathroom, reached for his mickey mouse seat, pulled his bottoms off, sat on it and went!!! I was absolutely amazed!!! Hallelujah...THANK YOU LORD!!! And not only that...but the morning was flooded with miracle after miracle with tons of meaningful looks, smiles, spontaneous language, imitation, flexibility and his receptive language and audio processing has soared!!! He even gave Koa 4 kisses this morning!!! All this from a child who once was completely UNREACHABLE, appeared blind and deaf when you tried to interact with him, often pushed people away, would tantrum or react as if in pain to certain stimuli like the sound of the toilet flushing or the garage door opening. I am beyond amazed at how far he has come. We've still got a steep mountain to climb but I know with God..all things are possible....and He is leading us on this journey...so I know our angel is going live up to his name: Ka'ēo - "The Victorious One" So today started off rough for me and I found myself sitting around the house crying. I knew I was choosing this yet in the moment I was unable to bring myself out of my discomfort. Then my little miracle boy comes from behind me, gives me hug and sits in my lap. He looked at me with a smile and noticed my tears. He gently wiped them away and then smothered me
with kisses. And that was just the beginning!!! It was miracle after miracle today for Ka'ēo Jr!!! Koa was home from school today so I did my best to encourage interactive play in the playroom. We made castles with our brick blocks, counted and hung up easter egg cut outs together, and then he even played our bunny hop game with us! We then went on an awesome nature walk together (again he held my hand the whole time, wore his slippers, did not get stuck on anything and listened to me the ENTIRE time...amazing!) He only ism'ed about 10% of the day and the rest of the day he was WITH us. He went everywhere we went and participated in everything we did! He also only had one small short meltdown the entire day (gigantic progress from the many huge long controllable tantrums he once had). When daddy came home from work, he spontaneously ran to the garage door and waited for him to come in the house to greet him with a kiss! At night he helped me clean up his playroom and helped his daddy get the beds ready for "sleepy time" by helping collect the pillows. Incredible! It's like he's finally aware of us and can handle the stimulation of being around us now. He once appeared deaf and blind. He pushed away and ran away from contact but now...WOW. It's like he can hear us and see us now...and clearly wants to be with us. So much so that he is choosing to step out of his autism where he feels safe and climb a very steep mountain to be where we are. I once couldn't sing a single note in our house without him yelling and covering his ears. Now I can sing all day long and he stays by side and even sings with me! There once was a time where his own daddy and brother didn't even seem to exist to him...now he is copying his brother and cuddles in his daddy's arms to fall asleep. I mean look at this video...he is watching his brother drum and copying him!!! It's just incredible!! My heart overflows with joy and gratitude for the miracles I see happening before my very eyes. We have worked so hard to get here and we still have more mountains to climb...but that's what it's all about anyway. It's all about the climb. Thank you to the Son-Rise Program and PRAISE GOD for helping us see our son and our situation as a BLESSING and not a curse. Our special angel is indeed heaven sent... One of the biggest gifts of running our Son-Rise Program for Ka'eo Jr has been the amazing family we've created around our little angel. The Son-Rise Program teaches us that, in order to be the most effective we can be in the playroom, we must focus on our attitude and beleifs about ourselves and any outside stimulus we might come accross. If we want Ka'eo Jr to move mountains to change, we must first model that we are willing to fearlessly dig deep within ourselves and change. Because of this we and our volunteers gain so so SO much more from this experience than we ever dreamed. One of our most loving, most enthusiastic, and most dedicated volunteers is our dear sweet Anna. Recently, she wrote this amazing letter to us as a recomendation for anyone else considering the opportunity to be part of Team Ka'eo Jr...our family: "Joining Ka'eo Jrs. son-rise team has been absolutely life changing for me. When I first emailed the ASD climber foundation I was interested and wanted to learn more about the program but wasn't expecting too much from it. I thought it would be interesting to learn more about autism and it would also be a great way for me to earn volunteer hours for high school. It started out as a project but from the first time Ka'eo emailed me I felt a pull to the program that hadn't existed before. I could see, without having to meet them, how much they loved their son and would do anything in their power to help him out of his autism. It became more personal after that, I wanted to help these parents, that were so devoted, to reach their goal. When I first sat down with Jackie to learn more about the program I immediately was at ease and any nervousness I had disappeared. She has such a loving way of talking to and looking at other people that I couldn't help but feel warm and safe, after her explaining for a while Ka'eo came home and started to play with his son. As they were together it was hard for me to focus on what Jackie was saying because I couldn't look away from the pure love I was seeing from Ka'eo to his son. After I left that day I couldn't wait to come back, to play with Ka'eo Jr., to speak with Jackie, to learn from Ka'eo, and hopefully to begin to understand where their happiness and love came from. Joining the program started out as a project to learn about autism, but quickly turned into a life style that I yearned for. To be happy, to be loving and accepting no matter what, to be given the power of choice. Such simple things that turned my life into something so much better then it was. Since being in this program I find myself waking up with a smile on my face more often, I find that I'm not upset easily, and I feel that I finally have a purpose. When I talk to people about Ka'eo Jrs. son-rise program they look at me in shock and say 'you're changing that boys life' and all I can do is smile and shake my head as I tell them that he's changing mine. To be able to enter Ka'eo Jrs. world is the greatest blessing I've ever been given. Through the steps to be in his world, I have learned so much about mine. I don't regret my decision, and don't want the day to come where I have to leave the program. I would recommend the program to anyone who is thinking about it." Koa had no preschool today so I decided to take the boys to the mall and indoor play area. We have kept Ka'ēo Jr from overstimulating environments because we noticed he was not able to handle them...but I wanted to test it out today to see...... how he would do since he has made so much progess. I was a little unsure when I saw at least 20 wild children running around the play area wondering if I had made a mistake. I wished there were less children playing and almost turned the stroller around and left....but instead I took a deep breath and went for it. To my pleasure...he did incredible! He ran around the crazy overstimulating play area with his little brother like any other child in there...climbed the mountain, slid on the slides, observed the other kids around him, looked at me with smiles and ran to give me hugs & kisses every time I called him ...and even left without a fuss. Then he went on all the ride on coin operated machines too!!! This was another HUGE one...in the past he refused to step foot in these rides but today he went in as happy as can be and even pulled me into the little bus with him so he could sit on my lap while Koa was our "London Bus Driver" ;) I was overjoyed! Thank you, thank you, thank you Jesus! |
AuthorsJackie and Ka'eo Griffin Sr. are the authors of this blog. We want to recourd our journey with our first born son, Ka'eo Jr, as we work together towards his recovery from autism. Mahalo for reading. Please share your thoughts with us! Archives
September 2014
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