Dad – When is the pause remote gonna be ready?

Posted on by The WillyPock Project

Hey Dad, when is the pause remote going to be finished. Andrew has been working on it for a really long time. I need him to finish. I have things and people that I need to pause – WillyPock – Age 14

Not one of the greatest parenting moments…

5 years ago, WillyPock (then age 9) asked if he could have a pause remote. I innocently asked: “what is a pause remote?” Of course the answer I received from 9 YO Willy Pock was: “you know, like the TV remote but for real life”. Well… because life doesn’t have real devices that pause real life, I gave the first answer that came to my mind: “Why don’t you see if Andrew can work on that for you?”

Andrew, at the time was a college freshman majoring in Mathematics and Physics and was idolized by his 9 YO brother. The pair had recently worked together to make a battery and an electromagnet. What seemed like an innocent suggestion to a 9 YO has turned out to be more than I could have imagined

Poor Andrew. Now a first year PhD candidate in physics, each trip home, each sleep-over he hosts his brother, each facetime chat, each text message with his younger brother is still met with the question “when is the pause remote going to be ready?”

Parenting WillyPock different than parenting his brothers. Flippant answers given at the spur of the moment to 9 YO Andrew or 9 YO Dan were forgotten by age 11. Those flippant answers had moved through the danger zone of child memory and fixation rather quickly. 5 years later and WillyPock is still asking for his pause remote. The need for a pause remote remains vital to WillyPock and the promise of one being built remains front and center in his memory.

Parents often screw-up, we are only human after all. Unfortunately, screw-ups with WillyPock last longer and often involve more members of the family. So we move on – So we hope to do better tomorrow – And maybe, just maybe – one day our older children will break the barriers of the space-time continuum and bail us out. WJP

Dad, Brothers are Cool

Posted on by The WillyPock Project

My brothers are pretty cool – sometimes. I really like the stuff they got me for Christmas. The new nerf gun from Andrew is awesome – I’m gonna win all our nerf battles now. And Danny gave me really neat Crocs to wear outside and listen to my music. Andrew also gave me a book of Disney songs to play on the piano.

Andrew went home on Monday. I missed him a lot already.

Yesterday was awesome, Danny taught me how to do a flip on the diving board – it was totally wicked — Willy Pock – Age 14

Will certainly is lucky to have brothers like he does. With the older boys being 23 and 21 and living outside of our home, the extended stays over Christmas are the best of times and the worst of times. Will misses them so much that he wants to do everything all at once. He just doesn’t have the ability to slow down and take life in stride. His over exuberance is overwhelming for the older boys – and their girlfriends. Cognitive disability bleeds into social disability.

Despite his desire to “do it all” and to “do it right now”, Will’s brothers are really good to him. Yes, the Christmas gifts were great and hit on things that Will really likes. But I think he took as much joy from telling jokes to his brothers, working on projects (like fixing & shooting the potato cannon that Andrew made for him 2 years ago), singing Karaoke together, and making panettone together. WJP

I Need to See Andrew

Posted on by The WillyPock Project

Yesterday we went to see Andrew at his new college.  It was a really long drive and Mom wouldn’t let me play on a phone during the drive because I played too many video games on Saturday.

When we got there, we had to sit around in a big room because Andrew was in a meeting. It took him a really long time but then we got to go and look at his room.  There were so many cool things that I wanted to touch while we were in his room.  I wanted to make coffee but Mom said “no”.  I wanted to push nails into his board but Dad said “no”. I wanted to fill his ice tray with water but Andrew said that I couldn’t go by myself.  I was so bored.

Later we walked a long way to get lunch. It was really crowded.

After lunch I wanted to play at a playground that we saw on our way to lunch.  Mom said that there wasn’t time because we had to go and do some more things in Andrew’s room before we went to some ceremony.  We had to do a lot more walking and there were so many ledges to walk on like a balance beam – Mom and Dad got really mad at me because it was taking too long.

When we got to Andrew’s building, I wanted to run down a ramp that looked really fun.  Andrew grabbed by arm and said that I couldn’t run.  It hurt.  I yelled at him and said that he was a horrible big brother.  Mom was angry with me.  Dad said that I had to go sit in the van with him while Andrew and Mom went to the ceremony.  Dad let me listen to music in the van but I was still really bored.  After a long time, he said that we could walk to meet Mom at the ceremony.  I wanted to see Andrew again.

Dad and I walked really far.  Finally we found Mom. She was sitting on a chair with lots of other people.  There weren’t any chairs for me and Dad.  I sat on Mom’s lap and played with her phone.  The battery died.  Then I went and played on Dad’s phone but I had to sit on the cement.  Andrew wasn’t with us.

Then Mom and Dad said we had to hurry to go stand in a big line.  We might get to see Andrew.  I stood by Mom behind a rope.  I wanted to take the rope out of the holder but Dad said I couldn’t.  We stood there for a long time.  Lot’s of people walked by.  Andrew walked past us.  I yelled for him and he smiled at me a little but he kept walking.  Mom was crying.  I tried to wipe away Mom’s tears and tell her to cheer up.

Then Mom and Dad said that we were going to walk back to our car.  I wanted to see Andrew again.  I asked Mom and Dad if I could just stay with Andrew in his hotel room and they could go home to Arlington Heights.  They said no.  I think I screamed at that they were really bad and mean and that I didn’t want them as parents anymore and that I wanted to see Andrew — WillyPock – Age 10

Yesterday was Sunday and the second day of Orientation Weekend for the University of Chicago’s class of 2021.  As mentioned by Willy, it was a bittersweet weekend as we watched Andrew get started on the next chapter of his life.  Willy’s limited ability to deal with concepts of time and delayed gratification made the day significantly more difficult – for us, for Andrew, and for Willy.

The day started beautifully in Arlington Heights and the Hyde Park campus of UChicago.  In Arlington Heights, Willy awoke and helped me pack the van with a few items that were left behind on Saturday.  He also recorded a video message for Andrew.  In Chicago, Andrew awoke and rode his bike along the lakeshore to Millenium Park.  The sun rose and the temperatures were still cool.

It ended with an overwhelming sense of missed opportunity.  Our day on campus with Willy was difficult.  His sense of curiosity means that he always wants to touch things – like a coffee maker in a dorm room and thumbtacks for a cork board.  His endearing social encounters create embarrassing flip-sides when he tells female students at our lunch table that he loves them and is going to marry them.  His continued pleas to disrupt walks in order to play video games on phones rattles everyone’s nerves and exasperates Andrew’s already marked unwillingness to pose for photographs.

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Because of his inability to regulate his moods, Willy and I sat in the van while Michel accompanied Andrew on his walk from his dorm in the International House to Rockefeller Chapel for the opening Convocation of the Class of 2021.  She witnessed the charming goodbyes between many siblings as families sent their students into the Chapel.  Willy wasn’t there – it was a missed opportunity.  Michel then had to find her own way to the viewing area for parents in the main quadrangle – a solitary walk.

Willy did manage to compose himself enough for us to join Michel and listen to several of the Convocation speeches (at least I listened while he sat on the ground with my phone).  We did manage to reach the front row of the Procession route as incoming students walked to take a class photo.  We did manage to see Andrew walk close by.  However, the moment was disrupted by maintaining vigilance that Willy didn’t chase after Andrew and by Willy’s incessant need to wipe away our tears of joys.

Following the Procession, conversation on the walk back to the car was dominated by cajoling Willy to continue walking and repeated denials of his request to “stay in Andrew’s hotel room” while Michel and I go back home to Arlington Heights.  During the walk, the news that he wasn’t going to be able to see Andrew every day finally seemed to take hold for Willy.  And he had missed his chance for a final hug.  For a final chance to say goodbye. It was just gone.

Of course yesterday was Andrew’s day.  It isn’t about Willy.  But then again, everything in our lives seems to have some element about Willy.  He missed his chance to say goodbye.  And unfortunately, I don’t expect that it will have any educational or experiential benefit for him.  I’d like to think that this experience will help him make the most of an opportunity of closure with Danny when he leaves for school in a couple of years – but I’m not that optimistic.

For now – I’ll just have to take solace in the fact that Andrew is a great big brother to Willy and that Danny will fill some of the void in Willy’s life (unfortunately, that means even more pressure on Danny) -WJP

Things that Are Beautiful

Posted on by The WillyPock Project

I had a journal writing project about what things are beautiful (I don’t think I spelled butiful right).

I wrote that flowers and Miss Courtney (my teacher) are beautiful. WillyPock

Willy certainly did have a journal post that indicated that Miss Courtney and flowers are beautiful.

Willy certainly can ingratiate himself to those with whom he comes in contact. He wants to marry just about every pretty female he meets (of course this creates much embarrassment for his brothers).

 But I think his desire to “marry” someone is is attempt to relate and recreate what he knows. His life revolves around family. Every female in his life is fair game with whom he can recreate his own personal version of what he witnesses everyday. WJP

Danny – Record Me! Record Me!

Posted on by The WillyPock Project

Dad made me go upstairs early the other night. He wanted me to read. Danny was doing homework – so I got him to record me reading one of the stories that they gave me at school.

I wanted to read the story really funny – by changing some of the words. Dad made me read it the RIGHT way first. Then he let me change the names. WillyPock

Willy didn’t do the greatest job reading “the old car” – but I learned something. We can get Willy to do just about anything if put it on video. He really likes to see himself on video – especially if he gets to do something that makes someone laugh.

We had another lesson about how much Willy is just like the other kids – just behind the development curve based on chronological age. His favorite movie – perhaps because it is my favorite animated movie – is the original Disney production of The Jungle Book. As part of the reward for appropriate behavior, Willy’s new school was planning a trip to see the new production of The Jungle Book.

Every review of the new production I’ve read suggests that this is a great movie that is visually stunning. Unfortunately, those same reviews suggest that many of the scenes are very intense.

For kids like Willy, who have a high degree of empathy for characters but who have not developed the capacity to different between fantasy and reality, watching the new Jungle Book would most likely lead to repeated nightmares.

We had to tell Willy that he couldn’t go with his classmates to watch the movie. The teachers and administrators at the new school were quite surprised by our decision to have Willy skip this school reward. “All the other kids in the class have already seen the movie” was the reply that we got.

In many emotional aspects, Willy is like a 4 or 5 year-old. For kids with development delays, its so important to different their academic work and the emotional supports provided to them. WJP

I’m Frustrated

Posted on by The WillyPock Project

Dad was really mad at me yesterday. I was playing with Moms phone and Dad wanted me to get ready for Church. I told him that I wasn’t going and that I was just going to keep playing Mom’s phone. Then I went under the blanket on my bed so that he couldn’t see that I was still playing with Mom’s phone.

A little later, Dad came back into my room and he yelled at me. He said that we were going to be late for Church because he had to stop getting ready to come take Mom’s phone. I told him that he was making me frustrated and that I didn’t want to go to Church and that I didn’t have to give Mom’s phone to anybody by Mom.

When Mom came into my room, she said that I needed to give back her phone and get dressed. I didn’t want to, but I did. I was glad we went to Church. We sang Gloria and Dad held me up so I could see the music lady. I got to carry the money basket to Father Tom. And Grandpa sang too! WillyPock – Age 9

Frustration – one more way that children with special needs are just like the rest of us. I’m sure that Willy was frustrated with us yesterday. I know that I was frustrated with him. I expect that there are few individuals who NEVER experience frustration with the individuals around them – including and especially those that they love.

Yesterday’s sermon was about Jesus’ commandment to love one another. Father Tom asked “what does it mean to love?” It was one of the first times that I had contemplated such a meaning.

For me, the first idea that came to mind was to selflessly provide for the needs of someone in our lives – or at least to attempt to do so. Knowing the needs of someone else is not an easy task. It requires a relationship between the two parties. Often, it means seeing below the superficial manifestation of need. If a person is malnourished, is it because they lack food, or the ability to cook, or the knowledge of a proper diet. If they have no food, is it because they lack the skills to earn a living, or transportation to a market. We can only understand these root causes through a relationship.

For children with special needs, understanding their unique needs sometimes feels impossible. Even for a child like Will, who is articulate, charming, witty and perceptive, I’m often befuddled by what makes him tick. For me the straight line between refusing to give the phone back and losing the chance to play Wii is direct and clearly visible. I get frustrated when he doesn’t see that line or just refused to make the connection. WJP

I Got This Dad; Willy – I Get It

Posted on by The WillyPock Project

On Saturday, I got really mad at Danny. He let me hit baseballs into his new net for a little while. Then it was time to stop. I didn’t want to stop. Danny went in the house and then I messed with his hitting net. I guess I broke it. WillyPock – Age 9

I don’t think I have ever been more proud of Danny than I was on Saturday afternoon. It might have been the greatest display of brotherly love and compassion that I have ever witnessed.

Danny had a really rough day on Saturday.

He had two very poor baseball games – poor for both him and his team. He managed to put on a good show of being “okay” when he got home, but it was obvious that he was down on himself.

When he got home, Andrew helped him finish setting up a “hitting” net that he had been building for several weeks. Last weekend, Danny managed to complete the frame and was looking for Andrew to help him attach the legs/supports to the frame. He also needed to finish attaching the netting. They finished – and for a few moments Danny was less melancholy. I expect that he was experiencing that sense of accomplishment from completing a project from the fruit of one’s labor. The pride was all over his face. Unfortunately – it didn’t last that long. After allowing Willy to hit a bucket of balls into the net, Danny took a turn hitting. The third ball that he hit, tore through the netting and sailed into the neighbor’s yard – which brought an immediate “you’re through!” from me. The sense of satisfaction and accomplishment faded as Danny realized that he was going to need to wait several more days for an opportunity to purchase better ties to secure the netting to the frame. Incredibly dejected, he brought his baseball gear to the garage.

While gone, Willy was alone the backyard. Danny returned to find that a gaping hole in the middle of the netting. Willy had pulled and torn the netting and torn it even more from the frame. As Danny and I returned to the backyard at the same time, my reaction was to send Willy to his bedroom. Danny turned to me and said, “Dad – I got this”. Then he turned to Willy and tenderly asked for a hug. While holding his little brother, Danny merely said “Willy, it’s okay. I understand the OCD and that you just couldn’t help it.”  The words were uttered softly. There was no hidden or disguised frustration in Danny’s voice. I cried as I watched the two brothers with their arms wrapped around each other for several long minutes. I don’t recall hearing the birds singing and whistling for these minutes. I just remember the silence of that brotherly embrace. I was left with an overwhelming sense of relief that Willy is never going to be alone. WJP

Dad – It was really hard

Posted on by The WillyPock Project

Yesterday was a really tough day at my new school. We were working on math that I hadn’t done before – subtraction with really big numbers. I didn’t have my counting line that they gave me at my old school. I got really frustrated. I didn’t get very many points on the work I was doing. I didn’t want to do any more. I get in trouble at the new school when I don’t want to do any more work. They take points away and then I don’t get to have social lunch. When I got in the car, I told my dad that the work was really hard and that I didn’t want to go back to school. WillyPock

Willy did have math work far more difficult than anything he had previously seen. He was working on subtraction with numbers of 2 digits. With this being only his second week at the new school, we expected a “feeling” out process for the new teachers to independently assess where he is at – but I didn’t expect that he would see work so far outside the bounds of what he has done before.

We are also waiting to see if the stretched envelope is a deliberate attempt to push him to frustration levels in order to assess how he reacts from a behavioral stand point. After seeing the results of his math work (8 out of 21 points) I was really surprised to see that Willy had one of his best days on the behavior side.

I also came across an interesting discussion of luck yesterday. The author of a book about the correlation of success and luck was being interviewed. During the interview a discussion of “headwinds” arose. The author made the following comment:

Tom Gilovich has actually written about this: he talks about the distinction between headwinds and tailwinds–he uses that metaphor. So, go do a Google search on the term ‘headwinds’ and you’ll see all sorts of vivid images pop up: people try to keep their umbrellas from blowing over in strong winds, people on boat decks leaning at 45 degrees to keep from being blown overboard. The idea of headwinds is a very simple psychological concept. And when you are riding into a wind on a bike or running into a wind on a road race, you just are very aware of the fact that you are working against a handicap. Once the course turns around and you’ve got the wind at your back–oh, that’s great.

It occurred to me that this is an appropriate metaphor for living with a disability. Persons with a disability don’t have the “luck” of the “course turns around” – they continually struggle into those headwinds. We who are attempting to improve their ability to react to their environment and interact with their community, must create a “tacking” efforts to minimize the negative effects of the headwind and maximize the positive effects that can be achieved  by traveling with the wind at their side. Of course, it takes years of practice to become an accomplished sailor. Developing an optimal path between points A and B and recognizing the precise moments at which to tack and come-about are difficult skills to attain  WJP

Just Like the Other Kids

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It’s still my goal that one day WillyPock will write and edit this blog by himself – or at least with minimal assistance. I think he will be able to do it.

To that end, the other day I asked Will what he would tell other people about himself if he could. The response was “I like video games”. Of course we were in the car driving to his new school and he had just been playing a game on my iphone. My first reaction was to ask for another answer (I was hoping for something more profound). But his answer reminded me just how much he is like most other kids. He may not play the same video games as his peers, but he loves video games as much as any other 9 year old. WJP

A Little Rough… But I Turned it Around

Posted on by The WillyPock Project

Yesterday was my first day at the new school. I was really nervous. Dad walked me in the front door. We sat in the lobby and waited for my teacher to be ready to start the day. After a while, the lady at the front desk walked me down to my classroom.

In the middle of the day, I went to the nurse’s office. I had a headache. She let me sit in her office for a little bit. She gave me a glass of juice and a snack.

At the end of the day, the classroom aide walked me out to the front desk where my dad was waiting. I told him that I had a bit of a rough day. After school, Dad took me to the library. I wanted to get The Incredibles movie. They didn’t have it, so we got a Narnia movie instead and a couple of books for me to read.

Dad got a call from my new teacher while we were at the library. Dad got really upset because I wanted to press the elevator buttons while he was talking to my teacher. When we got home, he told me that I couldn’t play any electronics for that day. I was sad. WillyPock

Yesterday was Willy’s first day at his new school. I don’t know who was more nervous. It was a big change. We had to leave the house nearly an hour earlier than before. We had to walk into a new environment. I was – and continue to be – really nervous that he won’t understand the “token” economy the school uses to achieve behavior modification.

As I waited for him at the end of the day, I could hear him laughing and giggling before I saw him. He greeted me with his usual captivating smile and the typical refrain of “I had a bit of a rough start, but I turned it around.” That is usually what I would hear when seeing him after his days at Windsor School. Hopefully, we will get to a point where an entire day can be “turned around”.

Because he tried to “elope” from the classroom on a couple of occasions yesterday, Willy will not be able to take “social” lunch in the lunchroom today. He will eat in his classroom. I’m not sure that he quite understands the connection yet.

His homework was also much more challenging than anything he has received from Windsor School. He will have weekly spelling tests at the new school. Yesterday, he was given a pre-test on 5 words. We practiced spelling those words out loud when we got home yesterday afternoon. Michel worked on writing them with him in the evening after dinner. I don’t know if he is going to be able to spell any of them during Friday’s test.

During the call with his teacher yesterday afternoon, it was clear that the new school is going to be much more matter-of-fact about the expectations and his abilities. Maybe this is what he needs. Maybe it will be too high a bar for Will to clear. WJP