We All Need Support

One thing I have learned from being a parent of an autistic child is that we all need support.  Someday I will write about Philip needing support, but today I will focus on how I need support.  I have mentioned before that autism is the hardest thing I have ever dealt with.  But in a strange way, autism has also blessed me in so many ways.  One way I have been blessed is by the community of support I have found.  It is so true that a shared load makes everything lighter.

Today I met with the ladies in my autism support group.  I literally would not be writing this blog about Philip’s amazing journey (of which I am so privileged to be a part of) without them.  If not for them, I might still be in the state of hopelessness I was in 2 years ago.  I might never have learned of Soma.  I might never have found a bridge for communication between me and Philip.

Our group formed about 2 years ago.  It was during a time I was feeling very sad about Philip’s lack of progress.  The feeling of hopelessness plagued me many days.  I have always had wonderful friends and family support, but even they could not fully relate to my situation.  I decided I needed to go to a support group.  As I looked on-line, I was discouraged to find a lack of groups that I could attend.  They were usually in the evening when I was occupied with my four active kids and my husband getting home from a long work day.  I had met a couple of moms at Philip’s adaptive swim class whom I enjoyed talking to.  I decided to start a group with them and invite the parents of Philip’s classmates at school.  I printed out some flyers to be handed out in Philip’s class with my contact info and the date of our first meeting which would be at my house.

The first autism support group meeting convened in my dining room in the fall of 2011.  There were 6 moms with sons or daughters about the same age from the same school.  We took turns introducing ourselves and who are children were, and talked about both the hardships and joys of raising our kids.  I remember commiserating with them as they talked about the difficulty of visiting at other people’s homes, receiving looks of annoyance or contempt in public when their kids misbehaved or threw a tantrum, and worrying that their kids weren’t getting the services or help they needed.  I also remember agreeing with them about how their autistic child brought their family closer and how some people can surprise you with their kindness.  It was a great feeling to be among people who truly understood because they walked the same path I did.

I also remember one mom, who I am now good friends with, mention she was going to Austin soon to see a woman named Soma.  I didn’t think much of it at the time.  I had never heard of Soma before.  Besides, I thought I was past looking for new things to help my son.  I was into discovering the newest treatments when Philip was 3-5 years, but nothing ever delivered as promised.  Philip had been stuck in neutral for a few years now and I thought it was time to stop chasing the wind and just accept the situation as it was.  I wouldn’t have called it giving up, but I was tired and no longer knew what to do.  I kept the thought of this new “therapy” on the backburner.

Our support group continued to meet once a month and everyone took turns hosting.  Getting together always energized me.  One particular meeting stands out for reigniting my hope for positive change.  We were at my friend LC’s house and she showed us a segment she recorded from the show The Doctors in which they interviewed Carly Fleischman, an autistic teen who doesn’t speak, but writes on a computer so eloquently.  Then we were treated to LB’s update on her trip to Austin with her son M.  She told us of how he learned grade level material like the Pilgrims and he was spelling answers on a letter stencilboard.  She said her son spelled that his favorite color was bIue.  When he was asked which shade of blue, he spelled, “sky.”  I could hardly believe it!  Then she showed us a video of M working with Soma.  It was like a miracle right before my eyes!   

I started to get a little more serious about looking into Soma.  I ordered her book, looked at the HALO website, and even went to Michael’s craft store to buy stencils and try doing it on my own.  But I didn’t really know what I was doing and it didn’t seem to work.  Again I put it on the backburner.  I thought, “What worked for M, probably won’t work for Philip.  He can’t spell.  He won’t understand grade level stuff.  It’s probably too good to be true.”  

Somehow after that, things about Soma kept popping up.  One night I was flipping through the channels and stopped at the 700 Club (which I normally don't watch) because I heard autism come up.  I ended up watching a segment on Elizabeth Bonker, a non-verbal autistic, who wrote the book I Am in Here.  In an interview, her mother talked about getting her start with Soma.  Then the summer of 2012 I met SC and her son MK at a bicycle camp for special needs.  The whole week we chatted while our kids learned to ride a two wheeler.  I learned she also went to Austin to learn RPM from Soma.  Her son went to a regular middle school and wrote intelligent letters to his class to explain how autism affected him and that he thinks normal thoughts except that his mouth won’t listen to his brain to get his words out.  MK typed with an aid and attended regular classes.  Finally I decided it was time to take the plunge.  I registered to see Soma in October.

I am not going to write about our amazing, life-altering week with Soma now, but I will stop to say many people brought us to that place: LB, SC, my Bible study and many others who prayed for us.  When I look back, I cannot help but see how this was God's answer to my prayers all these years.  God orchestrated all these people to enter my life to get us to where we are now.  To everyone who has ever supported us or prayed for us, I cannot thank you enough!

Another wonderful thing about being in a support group is what you receive, you can also give!  When I got back from Austin, I could not contain my excitement about what happened with Philip.  I encouraged the rest of my friends in the group to give it a try.  At one meeting, LC finally said, “If we are all planning to go to Austin, maybe it would be worth it to ask Soma to come to Buffalo.”  This statement began yet another landmark moment for many families which I will have to detail in a future post about Soma’s visit to Buffalo in May.

Today’s support group meeting reflected a passing on of a wonderful blessing: the gift of communication.  The group is no longer just moms of kids the same age from the same school, though it is our core.  We now have new parents in the fold.  Their kids range from 8-27, go to different schools, and are at varying stages of developing communication.  The blessing is all encompassing.  We notice our kids are happier and we as parents are happier too.  I no longer feel the crushing weight of the burden I carried 2 years ago.  I stand with my group, my friends.  Together we have strength to share our loads and it is no longer too heavy.  

    

                                     

The "Core Four" (with Sam and Philip) with Soma and Tito at the Buffalo Soma-RPM Conference

The Greatest Teacher

Today I was treated to a comprehensive lesson plan given by the greatest teacher of them all: God.  I know God teaches me everyday, but today He got my full attention.  The lesson involved instruction from His textbook, the Bible, as well as supplemental teaching from a child whom few would count as a teacher, and plenty of opportunities for practical application.

This morning I met with my beloved Ladies’ Bible study group.  Sometime, I will have to devote a post solely to them as they have been a lifeline and support to me in so many ways.  We have been going through the workbook called The Essential Commandment by Greg Ogden and studying in depth what it means to love God with all your heart, soul, mind, and strength and to love your neighbor as yourself (Mark 12:29-31).  Today I caught up with the ladies on how my vacation went, spent time in prayer, and then looked at Matthew 9:9-13.  In these verses, Jesus is seen having dinner at the tax collector Matthew’s house with a motley crew of “sinners”.  When the Pharisees, the upstanding religious leaders of the day, saw this, they indignantly asked the disciples why Jesus allows himself to be associated with such a crowd. 

On hearing this, Jesus said, “It is not the healthy who need a doctor, but the sick.  But go and learn what this means: ‘I desire mercy, not sacrifice.’  For I have not come to call the righteous, but sinners.” (Matthew 9:12-13)

Just these 4 verses sparked so much great conversation.  Connie, the wisest of our group and a great-grandmother, got us going by wondering, “Who would be in the group Jesus ate with today?” We started thinking of the people you'd stereotypically think church-goers would avoid: homosexuals, addicts, abortionists, criminals.  Then it started getting personally convicting for me.  What other barriers might I have consciously or unconsciously put up to hinder loving my neighbor as myself?  Often I tend to gravitate to people I feel more comfortable with.  It may be based on similarities in my age, age of my kids, or just a click in our personalities.  There is a man at my church a little older than me who has a very debilitating constant tremor.  He lives with his parents and comes to church with them each week.  Somehow, in the process of us moving to the back of the church since Philip has been having problems at the service, we managed to find a new permanent seat behind them.  I still have yet to talk to Z, other than saying hi.  I started thinking about the irony of this.  Here I am, a mom with a special needs child, still feeling uncomfortable about speaking to an adult with special needs.  I shared this thought with my Bible study and Connie reassured me, “God has moved you there on purpose.  I’ll be praying you make a connection with that family.” 

We then talked about what Jesus meant when He said, “It is not the healthy who need a doctor, but the sick.”  I can relate to this analogy very well.  I am a terrible patient.  I do not get my annual physical.  I think, “What’s the point?  I’m healthy.  I don’t need to use up a day at the doctor’s office when I’m fine.”  The thing is, a lot of things can get discovered at the doctor’s when you get checked up regularly.  You can’t feel the cholesterol in your blood or readily see a lump that may be starting to grow in your breast.  It is a fact that nobody’s body keeps going on perfectly while on earth.  In the same way, we all have a spiritual need for God.  Whether we recognize it, is the issue.  Once we see our own need, Jesus can fill it.

Finally, we aimed to understand Jesus’s statement, “Go and learn what this means: ‘I desire mercy, not sacrifice.’”  What is mercy?, we asked.   Compassion, kindness, active concern for someone else’s well-being.  Mercy has its focus being on our neighbor rather than ourselves.  I think sacrifice is a way of seeing the same charitable acts we do with a self-focus.  “Look what I did for you.  Look what I had to give up for you,” says sacrifice.

This lesson is very applicable to me daily.  I still have days I feel sorry for myself for not having the life I imagined it would be.  If you read my last post about our vacation, you can see how I took a stance of sacrifice and it turned into a woe is me.  I wanted Philip to go to the beach with me because I wanted to enjoy what I like.  I had to give up my preferences to be with him at the pool.  Instead, I should have practiced mercy from the get-go.  Understanding how much the sound of the waves hurt Philip’s ears should have made me more tenderhearted and concerned for Philip to the point that easing his discomfort would be a higher and more satisfying priority than doing what pleased myself.  This will be a lesson repeated over and over.  Thank God  I not only have the teachings of Jesus to help, but His example, as well as His great mercy on me for when I mess up again and again.

Now I have to tell you how Philip wrapped up my lesson for the day.  Philip and I were having our talk time with his letterboard in the dining room.  I decided we would talk about the places we visited.  The first place we went to was Philadelphia.  Before the trip, I had taught Philip about colonial times and Independence Day.  Besides visiting U Penn we also visited Independence Hall where the Declaration of Independence was signed.  Here’s how our conversation went:

Me: Tell me something about Philadelphia.

Philip: I like saying Declaration of Independence was designed to say no one in USA is unequal.

Wouldn’t that neatly sum up Jesus’s words for me today?  Now expand it to the world. 

We had dinner at an old colonial meeting house for mechanics.

Vacation

My family just got back from a great 2 week long vacation.  The first week was spent looking at colleges for my oldest daughter Ana on our way down to the Outer Banks of North Carolina where we spent our second week at a beach house with family from Chicago and Virginia Beach.  

For me, there is always some trepidation when it comes to vacationing with Philip.  Vacation means daily schedules are thrown out the window and brand new places and experiences are encountered.  For most people, this is what makes vacation fun and adventurous.  But with Philip, you never know what to expect except that it will most likely not go the way it “should” go.

During our first week of vacation we visited U Penn in Philadelphia, Johns Hopkins (my husband’s and my alma mater) in Baltimore, and Duke and UNC-Chapel Hill in North Carolina.  We also did some site-seeing which corresponded with some of the lessons I gave Philip before we went on our trip.  The college visits involved an information session in a big auditorium and then a campus tour given by a student.  We hoped we could take Philip along, but that proved to be too difficult between Philip’s inability to keep quiet and keep still.  Sam and I ended up trading places as to who would accompany Ana and the other kids and who would watch Philip.  

On our second week of vacation, we rented a big beach house in Nags Head with my sister Kit and her family and 6 of my cousins and their families.  We had 15 adults and 16 kids total!  The house had 10 rooms, a pool, and 2 hot tubs.  It also had a little boardwalk bridge over a sand dune in the backyard which lead right to the beach.  It was a beautiful getaway!  The company was even more wonderful.  We adult cousins and spouses got to catch up with one another and run the show for once (our first “reunion” as the oldest generation).  My kids each had cousins their age to play with.  Ana and Carlos went surfing and played pool with their teenage cousins.  Lia and the other girls made plays and song and dance videos.  Everyday everyone swam and played in the sand at the beach….everyone, except Philip.  

Philip would not go to the beach.  I do not know why things sometimes change with Philip because he used to go when we lived in Miami.  On the first day we all excitedly ran across the boardwalk bridge to get to the beach.  Philip ran across too.  But when he got to the other side, he immediately ran back.  We tried to hold his hand to come with us, but the more he pulled away and cried.  Another day we drove to the public beach where the waves were known to be good for surfing.  We thought maybe a different entry to the beach would work, but it didn’t.  Sam ended up driving him to 7-11 for a Slurpee to sweeten the deal, but after still having no luck getting him back to the beach, he drove him back to the house where Philip jumped into the pool.  The next day, Sam and I woke up at 5:30am to watch the sunrise and bring Philip to the beach while he was still sleepy.  Perhaps a quiet beach without lots of people would be more appealing to Philip.  When Philip realized where he was, he became anxious and fidgety, only walking with us with fear in his eyes.  Sam couldn’t take seeing Philip so miserable so he brought him back to the house while I took in the beautiful sunrise.  After that day, we no longer forced the issue of getting Philip to the beach.  Again, Sam and I took turns between watching Philip at the pool and going to the beach with the rest of the family.

Our vacation was wonderful, enjoyable, and full of great memories, but for me there was also a tinge of sadness.  Sadness because of unmet expectations that we would enjoy all these things together as a family.  In my mind I envisioned Philip would share the same joy I had of splashing in the ocean, building sandcastles, and discovering new things such as seashells and sandcrabs.  I wanted it so much for him, for me.  Sam is so much better than me about these things.  Sam would say, “Let him be.  He is so happy at the pool.”  I know I will have to let these things go and get used to a different “normal.”  Be happy just because he is happy. 

Just when I thought Philip would never go to the beach the whole trip, he surprised me.  On Thursday, I was watching Philip swim in the pool by himself.  It was about 5pm and everyone else was inside resting or getting ready for dinner.  Philip began venturing out of the gate to run across the bridge and back.  He did this often and I wasn’t concerned because he always came back, being afraid of the beach.  But this time he was gone a few minutes.  I decided to follow behind to see what he was up to.  I crept across slowly as to not startle him.  There I saw Philip, clearly on the beach, still far from the water, but playing in the sand.  He was rolling in the soft sand which was no longer scorching hot by this time of the day.  He scooped sand onto his legs and arms.  He was enjoying the pure sensation of it all.  When he saw me, he took off running toward the water.  He didn’t quite reach it before turning back, but it was the closest he got to ocean all week long.  I thought how interesting it was that Philip did make it to the beach after all- but on his own terms.

The next morning, I asked Philip why it was so hard for him to go to the beach.  This is what he spelled:

I do not advise it because it is d-e-f-a-i-n-g (misspell)

Me: Do you mean defeating?  Like the waves might overtake you?   

Philip: N

Me: Can you spell it again?  You do not advise going into the ocean because it is ___

Philip: d-e-f-e-n-i-n-g

Me: Deafening?  Like it hurts your ears?

Philip: Y

So that’s what it was all along.  The Saturday we left for home, Sam and I got up at dawn to see the sunrise and walk to the pier for the last time.  There was no one out but us, so I listened closely to the waves.  When there is nothing else to distract your attention such as people, pelicans flying overhead, airplanes with their ads to come eat at such and such, and even the concept of having a fun time at the beach, you can hear the sheer power of the waves as they pound the shore.  Sometimes a wave crashes in a fanning motion and when it does, it sounds like a rapid fire machine gun- no joke.  Somehow, Philip is tuned into things we are not automatically tuned into, or are easily distracted from.  I wonder what else Philip senses that we don’t.

Today I asked Philip of all the places we visited, which was his favorite.  “North Carolina,” he spelled.  “Why?” I asked.  “My cousins,” he spelled.  Just like anyone else.  Isn’t it the people that make life so enjoyable?

                                        Independence Hall in Philadelphia

                                    Getting the cheesesteak named after Philly

                                                    All our kids at the pool

                                      Our house and the bridge to the beach

                                                Finding Philip on the other side

                                                    Philip running to the beach!

                                                              The cousins

                                    The whole crew (minus Philip who is hiding)

So Hard

Philip’s newfound ability to communicate with his letterboard has been nothing short of a miracle to us, but it doesn’t mean it has been easy for Philip.  One thing that has been occurring more frequently is Philip has been banging his head.  Sometimes it is against the table or floor and sometimes he hits his head repeatedly with his palm.  It is clearly a sign of frustration and is very upsetting to watch.  I try my best to block him and he eventually settles down.  When I look at the past, Philip has exhibited this behavior during times of rapid learning or drastic change.  When Philip was around 3, he began a therapy called ABA which helped him start to speak to identify objects and make requests for favored things such as candy or chips.  The learning seemed to occur so rapidly in the beginning, but it never translated to using speech for real communication other than simple requests.  I do believe though that ABA gave Philip a great foundation of skills for learning, even though we could not readily see the evidence of it until just recently.  During that time, we saw Philip have tantrums for the first time, some with frightening intensity.  He was being stretched for the first time and it was so hard.  When we moved back to Buffalo from Miami in the summer of 2009, Philip seemed to have a hard time adjusting and once he banged his head so hard on our kitchen bay window that he cracked the glass. 

A couple nights ago Philip was crying at bedtime and I couldn’t understand why.  We had had a nice day at church and then a party with all of the soccer families from my 13 year old son Carlos’ team.  I asked Philip how he was feeling.  Philip slowly spelled, “I am awkward.”  I asked Philip what he meant by that.  “I can do nothing,” he spelled.  It was sad for me to hear that, but I encouraged him, “That’s not true.  You can do a lot of things.  You can read, spell.  You know how to swim.  You are doing so well communicating now and you will only get better.”  Philip seemed to settle down as I said prayers for us, and after I kissed him good night, the thought of Philip’s words lingered.

How hard it must be for Philip.  For years Philip had lived mostly an internal thought life.  I never knew what he thought.  I didn’t know how to access it and he didn’t know how to reach us so there was a great divide and in many ways we lived in separate realms.  Philip used stims to pass the time- pacing a path in the backyard mapped in his mind, twirling a leaf, drumming on the wall, or banging two blocks together.  What this all meant to him, I may never know.  

But things have changed drastically since we met Soma and learned Philip could spell and could communicate his own thoughts on a letterboard.  A bridge was built to link our worlds and it has been the most amazing thing to see Philip’s words and understand him for the first time.   But it is still hard, so hard.  For one, it takes a lot of energy out of Philip to communicate.  For us normal people, we can spew out paragraphs of words in a minute.  For Philip, he must painstakingly spell each word, letter by letter.  He must hear the question.  Come up with an answer.  Translate it in his mind to written language.  Coordinate his finger to point to the letter and keep track of his thought as he scans the board for the next letter.  It takes time, a lot of time.  One sentence can take up to five minutes sometimes.  It takes patience to finish spelling his thought and to trust the person on the receiving end will stay with him till the end.  Philip sometimes makes mistakes in spelling, loses focus, or has a need to take a break.  Sometimes he hits his head.  I will often ask if he wants to stop.  Sometimes he does, but more times than not, he wants to keep going.  As hard as it is, he wants badly to communicate. 

 

I admire Philip so much.  He is stronger and braver than me in so many ways.  Going out with his letter board to communicate with others is in many ways like trying out a foreign language in another country.  I myself am terrible with foreign languages.  I don’t try hard to learn them.  My parents speak Tagalog and Ilocano, languages of their native Philippines, and I lived in predominantly Spanish-speaking Miami for 5 years.  I had many opportunities to learn many languages, but I didn’t.  I wish I could have because it would have opened up the world to me.   Instead, when people start speaking a language other than my own English, I space out, leave, or ask people to translate.  I guess I am autistic when it comes to foreign languages.  My brain just doesn’t seem wired for them!  

So I tell Philip how proud I am of him.  His work is ten times harder than mine.   His mind is not wired for this world, but he works so hard to get through to us that he wants to join us.  I pray it will be easier for him in time.  I will do all I can to help him.  

                            Philip with Soma at the HALO Clinic in Austin, TX- Oct. 2012