The Cottage

By Philip

I had a go at camping in Canada this weekend. I loved it. Peaceful and quiet it was. My Aunt Kit and Uncle Mike made our family feel so welcome at their cottage. I am thankful I got to go. Nature was all around me. I made the most of being out in nature. I marveled at God's creation. I picked wildflowers and passed many plants and trees on our hikes. I smelled the pines. I heard animals chirp, splash, and scurry. The lake was so peaceful. My anxiety melted away looking at the clear and soothing water. I am sane and calm around all of nature and peace abounds in my soul. I wish I could live a more simple life. My perfect life would be in the country. Part of me wanted to stay forever.

At the cottage I tried lots of new things. I have made more daring efforts to try new things. I went on a motorboat. Motorboats are loud but fun.  I am putting up with loud noises more so I can slay my fears away. Action packed was my weekend.  I swam, paddleboated, hiked, fished, and rode on a boat and a canoe. I also saw animals like a heron, hummingbird, loon, and a fox. I tried fishing for the first time. Uncle Mike helped me by showing me what to do.  I didn't catch anything, but it was great to try. Mastering the fear of trying new things makes me satisfied with how well I am living now. Making bolder decisions makes for a more exciting life.  I am glad I went to the cottage. It was so relaxing and fun.

 Paddle boating with Dad

Fishing with Uncle Mike

Thank you Aunt Kit and Uncle Mike for inviting us to your cottage. I really enjoyed it.

Relaxing with the Family

Copyright 2015 Philip Reyes.  All rights reserved.

College Trip

My wish is to follow Ana, not only this week, but to pursue college too someday.  I liked going to help Ana look at schools.  First we went to Chicago to look at Northwestern.  Chicago was cold and it snowed.  I kind of accepted it was like my home in Buffalo.  I mind it some.  Ideally it should be warmer.  Northwestern was teaching engineering in a whole completed way.  They totally get it that one should solve real life problems.  I liked that students were working on a brace for helping someone after having a stroke.  I also liked that someone talked to me about my letterboard.  He was so nice.  He was a student named Alex.  He said he could help make my letterboard electronic.  I was so meaning to tell him how happy I was for him talking to me.  I really liked Northwestern.  I understand I will not be able to be an engineer but I have tons of ideas they can work on.  I want them to give autistics voices.  I understand it will be difficult but kids will be much better off.  I hope he can get it done.  I enjoyed Chicago.  I enjoyed walking to the pizza restaurant.  The food was great.  I liked to wear my warm clothes.  It was so cold.   

   

My time in Baltimore was fun too.  I loved the needed break from the always cold weather.  I liked playing outside to understand the ripeness of spring token to Baltimore.  I played among the pretty trees flowering white blossoms.  I danced along paths of red and grey stones.  I laughed in the sun.  I am happy outside a lot.  I enjoyed learning about Johns Hopkins.  It was a pretty school.  I would not hear about the program because my Dad took me out.  I was being too loud.  Johns Hopkins was mostly tons of students who have no regard for me except one who understood kids like me.  He was the tour kid (guide).  He smiled at me.  The kindly way to make my day is to be understanding and smile kindly.  I had a lovely vacation.    

*Lisa's note:  We had a good week looking at schools for my daughter Ana and exploring Chicago and Baltimore.  Philip really impressed me, especially at Northwestern.  He sat for presentations for about 6 hours and was taking it all in.  At lunch he even talked to Alex, an engineering student, using his letterboard and we presented the idea of making his letterboard into a lightweight keyboard for an ipad that could give voice output.  We are keeping in touch with him and the coordinator of the student design teams to see if they can help us make it a reality.

 

At Johns Hopkins

Birthdays

Today is Philip’s 11^th birthday.  His due date was March 14, the same birth date as his older sister Ana.  But Philip took his time and was born 3 days later on St. Patrick’s Day.  I remember my Auntie, who is now in heaven, imploring us to name him Patrick, but we stuck to our original name picked out: Philip Mark.  Philip is named after Philip the evangelist and Mark the Gospel writer in the Bible.  The story of Philip is found in the book of Acts chapter 8, verses 26-40.  Philip was lead by the Holy Spirit to an Ethiopian official in his chariot studying the book of Isaiah of which he did not understand.  Philip explained the prophecy about Jesus and told him the good news of the Gospel.  The Ethiopian received the Good News with rejoicing and was baptized by Philip.  Philip went on to preach the Gospel throughout the nearby towns.  I always liked that story and envisioned Philip a good namesake for a boy I’d hope would bring the Good News to others someday. 

For most kids, birthdays are a joyous time of celebration with friends and family.  There is anticipation about the new year and what milestones lie ahead as the child grows and becomes more independent.  During the period of time between Philip’s diagnosis of autism and before the advent of his communication, each birthday of Philip’s was a bittersweet occasion.  We would celebrate with family and friends and even have children’s parties at My Gym or in the back yard with a bounce house when we lived in Miami.  We took pictures of our happy family and Philip opening presents and eating cake. But after all the guests went home, I would mourn another year lost.  In my mind, Philip’s window of recovery was shrinking with every passing year.  Every year he fell further and further behind his peers.  Every year he would be less tolerable in public as he grew in size but remained at a static developmental level (so I thought).  And then there was always the thought lurking in the recesses of my mind: what will happen to Philip when he grows to be an adult?  Where will he go when we are too old to take care of him?  It was a thought I mostly tried to shut out because it was too scary and painful to think about.  As Philip grew older, the less I thought his name fit him.  How could he be a herald of good news without a voice?

That all changed October 23-26, 2013 when we took our first leap of faith into trying RPM for the first time.  In Soma’s HALO Clinic in Austin, TX, we got our first glimpse into Philip’s potential as he learned to listen to Soma’s grade level lessons and demonstrate his comprehension by choosing from written choices and then spelling.  He even answered some open ended questions.  Many of these stories have been written about in previous blog entries such as here, here, and here.  Philip’s voice did not develop overnight and it did not develop in the way I envisioned.  There was no magic pill and Philip’s transformation was not overnight.  He did not become less autistic in appearance, yet his maladaptive behaviors did improve.  He is in every way autistic and wonderful.  Yesterday I reviewed the videos I had taken 7 months into RPM, then 1 year, then a year and a half.  How encouraging it was to see the gradual progress!  And through all those years I had waited for spoken words, I never had envisioned the joy I would feel in seeing his words emerge letter by letter on a letterboard.  They are more precious than gold to me.  It was the reason I started to blog so I would never forget them.  Of course I still would love to hear Philip speak with his physical voice and hopefully one day he will, but I am beyond grateful to finally know what Philip thinks and I will take his words however I get them!

Even though today is Philip’s birthday, we celebrated yesterday.  It was the first time Philip gave input to what he wanted for his birthday.  We gave Philip a choice between a party with close family at a restaurant or a kids’ party at a playplace.  He chose a restaurant.  He wanted to go to his Dad’s favorite restaurant called Tempo.  It was kind of cute because he had never been there, but he recalled a time he conversed with his Dad about restaurants and they looked up the menu on his Dad’s iPhone and talked about what they would order.  Tempo happens to be one of the most expensive and upscale restaurants in our city, so we bargained him down to a more reasonable venue, a Greek family diner called Spilios.  Philip sat at the head of the table with 15 of our closest family:  Lolo and Lola (grandparents), his cousins, and aunts and uncles.  Philip ordered and spelled for the waitress what he wanted: sprite, fries, eggs over medium, and bacon.  We had homemade chocolate gluten-free birthday cake and everyone in the restaurant joined in to sing Happy Birthday.  Philip looked so happy.

This is the first birthday since his very first birthday, that I have not felt sadness.  I anticipate Philip’s growth like I do my other children now.  Philip’s future is so bright!  It is a clichéd saying that God works in mysterious ways, but He does!  He likes to use people in the most surprising ways.  In the Bible, we see Moses, a prince in Egypt, become the liberator of the Hebrew slaves.  We see Peter who denied Jesus 3 times in the face of fear, become the bold powerful leader of the early church who died a martyr.  It makes me rejoice with awe to see how God has upheld Philip’s namesake in the most paradoxical way.  A boy who cannot talk is indeed bearing good news to the world made manifest in his writing.  Philip’s mission is to change perceptions of autism and give a voice to autistics who cannot speak.  He is accomplishing his mission of hope daily through his blog.  As of today, readers from 39 countries have read his words.  He has encouraged children around the world like himself through exchanged emails.  He has inspired parents to seek alternative communication methods for their kids and help them persevere.  He has explained autism from his insider view to allow people to understand and know how to act with respect and kindness towards autistics.  Philip has many dreams and is actively pursuing them.  He is on his way to mainstreaming in school and is setting his sights on becoming a writer among other things.  Who would have ever thought?

This 11^th birthday is indeed a most happy occasion.  Happy Birthday Philip!  May you reach for the stars! 

                

Niagara Falls Aquarium

This week we have been going on outings for the kids’ mid-winter break from school.  Philip requested the Aquarium this morning.  We had never been there before so it would be a new adventure for all of us.  However, when we finally got there, upon hearing the water from the outdoor seal fountain, Philip became anxious and ran back to the car.  We tried to coax him to go back so we could go inside but the more he cried.  We did finally make it in.  Here is Philip’s account of our outing.

I enjoyed the aquarium.  At first I listed the reasons I didn’t want to go.  They were crowds, yelling, the waterfall outside was terrifyingly loud.  I was afraid of making others stare at me.  I am of age of being more independent but I need tons of redirecting.  I was each day timing an interest to when there would be less people to annoy.  I am not trying to be one to bother people but end up not being able to help it.  My body has a mind of its own.  I wish I could control it better.  I am getting better intelligence in public places.  I am each day anxious about lots of things.  It is each day hard to flee things that cause anxiety.  I think of ways to calm myself so I can have fun too.  Today I was having a hard time getting down from the car to go to the aquarium.  I was crying a lot because I was tense and petulant (mom wasn’t sure what that word meant so I substituted ‘stubborn.’  Petulant is actually a better fit because it means unreasonably irritable or ill-tempered).  Came so far to see aquarium and I understood Lia would be disappointed.  My mom helped by not getting mad because it would have made it worse.  She responded by playing Beatles to calm me.  Then we ate at McDonald’s.  I felt better so we went back.  Each day I want to conquer my fears like I did today.  Each day I want to enjoy everything to learn because there are tons of cool ideas to think.  I enjoyed the aquarium.  I liked the seals the best.  They swam so peacefully, gliding like planes underwater.  I like the anemone too.  It is pretty.  I liked the penguins.  They are cute.  I think the needed thing missing is a walrus.  Each day I like the people too.  I pretend to be a normal kid at public places.  It is good practice.  I am having more fun out in the world.  You are a good mom for bringing me places.  Thank you.  

*Mom’s note-  I am proud of Philip this week for being able to go on all our outings this week.  Philip has been desiring more and more to do things like typical kids.  Though he has many challenges, he is taking his own initiative to cope and adapt so he can participate.  I am also proud of myself for learning to handle Philip’s challenges better now.  In the past I would have yelled and tried to force Philip to go in screaming.  Or I would have given up too soon, driving home steaming mad about a wasted trip.  I am finding that a combination of patience, kindness, and understanding is the best for everyone.