Dinner Conversation

Five years ago, I wrote some goals for Philip during an RDI workshop.  You can read about it here.

Two nights ago Philip officially accomplished goal #1: To participate in dinnertime conversation with the family.  In fact, he did this in grand fashion!

My father-in-law was making his specialty, Cajun Gumbo.  We decided to have my parents and sister’s family over as well.  A total of 11 of us were sitting in my dining room eating and talking.  In the midst of everyone there, I decided to ask Philip how his day was going.  “I AM HAVING A HYSTERICAL DAY,” he spelled.  It would have been great to have a video camera on us because as Philip was spelling H-Y-S, I must have looked very confused because I thought he was going to spell nonsense.  I asked him several times, “did you mean to use that letter?”  “Y” for yes, he would answer.  As he continued spelling, I started understanding where he was going.  I was really focused on the board that I didn’t notice the facial expressions of Philip or those around me.  According to Kit and Grandpa Mike, Philip had a twinkle in his eye and had an impish smile on his face.  According to Grams, everyone was really enraptured and delighted by his spelling.  I really wanted to show everyone how good Philip was at math so I had my dad ask him a math question.  He started with“What’s 5+5?”  “10,” Philip answered.  My dad was clearly impressed.  I told him to ask something harder.  He asked a few multiplication questions.  I finally had to tell my dad, “That’s easy for him!”  Everyone laughed.  Then he tried a fraction question.  Philip got it right too.  My dad was so excited.  He asked Philip if he knew his first name.  “ROGER,” he spelled.  I had never seen my dad so happy around Philip.  After dinner Grandpa Mike told Philip he was the star of the night and they gave each other high fives.  I could see the confidence in his demeanor.

Philip has been having a breakthrough in social conversation just in the last 2 weeks.  Where once he was only able to spell around me, he is expanding his ability to spell with many people and have back and forth exchanges, though it is still slow.  Today Philip greeted the ladies in my Bible study.  “I excited to see you.  A nice day today.”  With his Grams, he answered questions about school and spelled, “An education interests me.”  When Grams asked what he thought about her and Grandpa Mike, he spelled, “I’d like them to stay.” Philip’s siblings are also bonding with Philip in a way they never had before.  Carlos wants to have a fantasy football team with Philip now that he knows Philip can talk sports.  Once Carlos asked Philip what his favorite team was.  “BILLS” he spelled.  Then he asked Philip which quarterback was the best.  “BRADY” spelled Philip.  Another time Philip chose to talk about “ARSENAL.”  “The pro team or my team?” asked Carlos.  “YOURS,” spelled Philip.  Philip proceeded to amaze us with naming some of Carlos’s teammates and even some of the positions they played. 

It is a very exciting time in our family.  I look forward each day to discovering more and more about my amazing son!         

 Austin Oct. 2012

  

       

Self Advocate

Today we met with Audra, our service coordinator from SKIP of NY.  SKIP is one of several service coordination agencies in our area.  In NY, we are assigned a social worker to help us register for the Medicaid waiver and find out about appropriate programs and services to help our kids.  We meet face to face in our home with our social worker about once every 3 months.  Audra is one of those people who goes above and beyond her call of duty.  She calls me whenever she finds out about a new program, offers to make difficult phone calls, attends IEP meetings, and genuinely listens and cares about what you have to say.  

Usually our meeting is very straight forward.  I talk with Audra while Philip wanders around the house after a quick “hi.” There usually is very little to report and we are done in 20 minutes.  I sign on the line as Philip’s advocate and we’re done.

Today was different.  For the first time, I sat Philip with us at the dining room table.  I had told Audra about Philip’s breakthrough on the phone, but she had not yet seen him communicate.  I held the letter stencil for Philip and told him he will now be his own advocate.  Audra said hi and asked how he was doing.  “GOOD,” Philip spelled.  “IT IS NICE TO SEE YOU.”  Audra was so impressed.  Philip eventually slipped away as Audra and I talked at length about Philip’s progress, about changes happening in service coordination, schools, and other things.  In fact, we were so engrossed in conversation that 2 and a half hours sped by.  Finally, we got back on track about going forward with Philip.  “What activities is Philip interested in?” asked Audra.  I told her I thought he’d be great at track or swimming, but then said, “Let me go get him.  He can answer for himself now.”  I brought Philip back to the table and Audra asked him, “Would you like to do a sport?”  “Y,” pointed Philip.  “Which one?” she asked.  “GYMNASTICS,” he spelled.  A little later we asked Philip what school he wanted to go to.  “NORMAL SCHOOL,” was his response.

At the end of the meeting, Audra asked Philip to sign his individualized service plan (ISP) on the line where it said client and above where I would sign as advocate.  I was touched that she treated him this way, giving him ownership of his plan.  This was the very first time he was asked to sign anything.  I did put my hand over his to give stability to his hand which on his own cannot form letters yet.  I allowed his hand to move under my own.  As he wrote, he spoke out loud, “P-H-I-L-I-P, R-E-Y-E-S.”  I also signed my name as advocate.  I feel so blessed to be his advocate.    

Then, with eyes watering, Audra broke the news that she would no longer be our service coordinator.  She was promoted to a new position in a completely new branch of the agency.  I was crestfallen.  I told her how much I appreciated her and how I completely understood why they would promote her.  She was so kind and always gave her best.  She expressed gratitude for having gotten to know us and see Philip’s progress.  She told us she would continue to let people know about RPM and we could always stop by her office to say hi.  

We’ll miss you Audra.

Niawanda State Park- Memorial Day 2013

Math Whiz

Over the weekend my mom gave me an article from the newspaper entitled “Autistic kids with math abilities show different brain patterns.”  You can read it online here.  In addition, in the documentary A Mother’s Courage, there was a professor interviewed who made the comment that the vast majority of autistic individuals have ancestors who are engineers.  These revelations are very intriguing to me.  Among the discoveries I have made about Philip since we met Soma is that Philip loves math!  He has told both his friends Michael and Nelson that his favorite subject is math.  He even told me one day he wants to become a math teacher!  This shouldn’t surprise me too much.  After all, he comes from a family of math whizzes.  My husband Sam got a dual engineering degree at Johns Hopkins in biomedical engineering and electrical engineering.  On Sam’s mother’s side there are many engineers.  Sam’s grandfather and several grand uncles were engineers.  His mom’s brother is a nuclear engineer in Los Alamos.  Of the kids of that uncle (Sam’s cousins), one is an environmental engineer and the other a math teacher.  On Sam’s father’s side, he has an uncle who is a civil engineer.  Sam’s father might have been an engineer, but he became a mechanic first and then worked his way up in sales and then administration in Ford Motor Company.  My side is not as mathematically oriented, but my parents are both doctors, so certainly no dummies!  My 4 kids are all math oriented.  Ana and Carlos were both placed on the gifted track in Miami, mostly based on their superiority in math.  My oldest daughter Ana is now looking at colleges with engineering programs.  

Tonight was fun working on math with Philip and Sam.  We like using an iPad app called Brain Pop to teach Philip math concepts.  In fact Brain Pop is great at teaching all subjects.  There are hundreds of 2-6 minute video lessons on many subjects in science, math, reading, social studies, arts, and technology.  Then there are 10 question quizzes on each lesson.  I have been teaching Philip about fractions now that he is proficient in the basic operations in math.  Today we got into multiplying and dividing fractions.  I actually needed some help in figuring out the answers to some of the quiz questions so Sam stepped in to teach.  It was great.  Philip was really into what Sam was teaching.  He wasn’t antsy or fidgety, but really focused.  Philip was blowing us away with how fast he was picking everything up.  He was reducing fractions, changing mixed numbers to improper fractions, doing inverse operations, and solving multi-step problems.  A lot of it he was doing in his head too.  When we finished the night, Philip had gotten 90% on his quiz (the one he got wrong, Sam got wrong too!).  Sam actually got teary eyed.  I think it was one of the first times he really bonded with Philip over something they both love.   

I am truly excited for Philip.  I have always wanted to know what he liked or what he’d be good at so we can help him channel his energy in a certain path.  I think we may now have found it in math!

One of Philip's favorite activities when he was younger was lining up his flashcards in a beautiful fanshape pattern.

Miracles and Answers to Prayer

I cannot recall a day without a struggle or frustration of some sort.  Most days, they are not too bad, but some days they can be so overwhelming and seem so insurmountable all you can do is cry.  I’ve had days I’ve broken down to the ladies in my Bible study so overcome with grief about Philip never improving, frustration that he’d never be toilet trained, and many other things.  I’d wonder if God would ever answer my prayers.  When you are in the midst of a struggle, it is hard to see an end.  It is hard to see how any good can come of it. 

I’ve learned to just pray.  I can’t say I understand the mechanism behind it or how God chooses to answer or what His time frame is, but I can say I HAVE SEEN GOD ANSWER PRAYER AND I HAVE SEEN HIS MIRACLES.  This doesn’t mean that life is now problem free.  But when I am facing another challenge or struggle, I can be encouraged by looking back at how God has carried me through in the past and blessed me over and over again. 

Today my friend Ellie and her son Nelson came over again.  Philip and Nelson played a couple games of UNO and Philip even spelled “CONGRATS” to Nelson after he won.  They chatted a little and then went outside to join Carlos on the trampoline and play soccer.  Ellie told me she was doing some back-to-school shopping and we got on the topic of schooling.  She told me she spent much time praying about where she should send the kids and how Christian Central Academy kept entering her mind daily as well as the scripture, “You do not have because you do not ask.”  When they finally met with the school and asked for help so their three children could attend, they were granted it- a prayer answered!

I then told Ellie some prayers God answered for me- and now I will tell them to you.  These are just a few of the many…

When we were in Miami, during the first year of Philip’s diagnosis, we had a home ABA (Applied Behavioral Analysis) Program.  We had a staff of students trained by a licensed behaviorist named Andrea Holladay.  There were 2 students from the University of Miami and 3 from Miami Springs High School.  The kids took turns coming to our house teaching Philip the basics of learning- sitting at a table, answering to his name, colors, shapes, letters, numbers, imitating, identifying objects and actions, categorizing, the beginnings of speech.  They worked tirelessly with Philip 6 days a week.  Philip learned a lot, but at times it was exhausting managing and training that many people.  At the end of the first year, all my students were graduating and moving on.  I couldn’t bear to think of finding another group of kids, training them again, and starting over.  I prayed and asked God what we should do next.  This is what His answer was:

At the end of the year, not only were my students graduating, but Andrea, our behaviorist, was moving to Lakeland, a town in central Florida.  She told me her friend Juliana Hunt who was also a BCBA (licensed behaviorist) was starting a school.  She gave me Juliana’s card, we hugged, said our goodbyes, and never saw each other again.  Then I dialed Juliana’s number.  It turned out she was starting her school called ISMILE (Institute of Special Minds Interacting in a Learning Environment) at Poinciana United Methodist Church in Miami Springs.  This church was located exactly next door to our house!  We literally would walk 50 ft from our front door and there we were!   Not only that, but the school was affordable and had trained BCBAs as teachers.  Philip had a great 3 years at ISMILE.

Our next miracle took longer in the making.  Who understands God’s timing?  In the Bible God brought about His promise of a son to Abraham many years after he and his wife were of childbearing age.  Abraham was more than 100 years old.  I wonder how agonizing that must have been to have to wait that long.  Yet, in another instance, God answered the prayer of Abraham’s servant to find Isaac a wife even before he finished praying!  

I remember immediately after Philip was diagnosed I told Pastor Van in Miami to please pray for Philip.  He did right then.   During Sunday services, he would often remember to pray for Philip and our family, among other requests, in front of our church body.  I also sent my church in Buffalo a request for Philip to be on the prayer chain.  I included a video that showed what autism was like so they could get a feel of what to pray for.     

It took many years of praying by many people before we got our next miracle- one I had never thought we’d ever get.  My Aunt Maricel is a true prayer warrior.  She has probably prayed even more fervently than me and with stronger faith than me.  She told me she was praying for Philip daily and knew God would heal him.  I would say things like “maybe God is using Philip to teach me patience and maybe he is choosing to answer no to somehow bring me closer to God.”   “No,” Maricel would say, “God will bring Philip good too.  You will see.”

I have had others who have specially prayed for us.  My friend Jean and I have a habit of emailing each other on a regular basis to exchange prayer requests and praises.  At one lunch meeting she told me that as much as she can pray and empathize, perhaps I need to find a support group with other parents going through the same thing.  Her advice, given in love, is what spurred me on to start my current autism support group.  

My Wednesday morning ladies’ Bible study has been instrumental in lifting us up in prayer.  Nichole, Deb, Connie, Paula, and Maricel have been my front line of prayer.  Kit, Lena, Jen, Janette, Amanda, Eun Kyoung, Betty, Kim, and Leigh have also prayed for us.  Our Bible study meets and prays every week.  There are so many requests we have brought to God and seen remarkable answers.  We have prayed people through cancer, job searches, adoption, tragedies, deaths in the family, and for God’s peace, among many other things.  We’ve seen God answer over and over in ways He is glorified by His amazing grace and goodness to us.  I believe the many prayers for Philip is what lead us on our path to Soma.  During the time of waiting God was teaching me many things: trusting in Him, patience, perseverance, mercy, and compassion.  He was also building a large support network for us and training me to eventually help others like Philip and our family.  

I have mentioned before how instrumental my autism support group has been in helping me discover Soma.  You can read about it here.  In the days leading up to our trip to Austin to see Soma for the first time, I emailed as many people as I knew, who knew about Philip, to pray for us.  I sent them a video link of Soma's segment on 60 Minutes and asked for prayer that Philip would respond to this method.  I myself was so nervous it wouldn’t work, but hopeful that it would.  Even though I felt doubt that it would work, I knew in my whole being that God could do as He pleased.  He could help Philip through Soma.  So I, along with countless others, prayed and prayed.  I know my Bible study met the Wednesday without me and spent a long time praying for us while we were in Austin.  I literally could feel their prayers as Philip went from tantrumming the previous day (Tuesday), his first time with Soma, to sitting through his lessons and amazing us with his knowledge that was tucked away from us all these years and just now releasing itself for the first time.  I came away with tears of joy each day.  

As you know, our lives have been changed for the better through God’s answers to prayer.  In the next few days I will post our letters of prayer and praise during our first trip to see Soma.

    Philip and his teachers from ISMILE