February 20, 2011 "You're Not My Mom!"

Porter totally called me out for bad behavior last night. I signed the boys up for UFit, an activity program at the U that pairs up kids that have disabilities with an individual volunteer. Last night was the first night and the building we needed to get to is just north of the Hunstman Center.  Upon entering the parking lot I intended to park in, I was greeted by one of four attendants who informed me that there was a gymnastics meet and I needed to be a blah blah blah member or have a blah blah blah pass in order to park there. I quickly explained that I was actually there to attend a program for my kids. He asked if I was just dropping them off, and in hindsight I should have answered yes and then stolen a parking space after they let me in. Instead, I told him that I needed to go in with them to verify registration, complete a parent interview and meet their partners.  “Well, then you’ll have to park in the next lot over.”

Ugh. Really? And then a conversation ensued that went something like, “This is ridiculous. I paid for them to participate in this program and I can’t park here?” “That’s right, only blah blah blah members or a blah blah blah pass will work.” “Tonight is the first night, I wasn’t informed that there would be an event here. I was told I would be able to park here.” “Then I suggest you mention that to the program directors.” “I have a four year old in here. You expect me to walk him across campus?” “Unless you have a blah blah blah pass or are a blah blah blah member, then yes, that’s what you’ll have to do.” By this point I’m not quite yelling, but my voice is raised, I’m frustrated, and obviously not happy.

I take a breath, give up for a moment and let him start giving me directions to another lot.  I’m trying to clarify, because I don’t want to be driving around campus lost. The next thing I know, another of the four attendants approaches my window and says, “Mam’ you need to leave now.” To which I reply sternly, “I’m trying to figure where I’m supposed to park.” “Oh, are you telling her?” he says to the first attendant. So after I get the directions, I leave, heated and in a hurry. That’s the gist of what happened anyway.

Porter says, “Mom, what’s wrong? You never get that mad. Why were you so mad?” “I’m mad because I wasn’t planning on not being able to park there. The building we need is just right there, now we have to go park somewhere else.” “But you never get that mad.” Then Porter started to get upset and continued to be confused by my behavior. By the time we reached the parking lot, he was shouting, “You’re not my mom!” and on the verge of tears. I parked and told him to get out of the car as I grabbed Parker and then we all started walking. “You’re not my mom!” and then he reached up to me, put his hands around my neck and pulled, but my head not detaching wasn’t proof enough. “Where was I born?” “In West Jordan.” “What hospital?” “Jordan Valley.” “You’re my mom, but why were you being such a brat? ‘I have a four year old in here.’ Why did you say that?”

That’s when I felt a huge mix of emotions, a little embarrassed and ashamed that I behaved in a way that upset and disturbed Porter, yet proud that the actions were so out of character with how he really sees me that I must really be a pretty patient, calm and kind person. In fact, viewed by an outsider, I probably did look like a brat, an entitled adult diva throwing a fit and trying to get her way. And I must give credit to the attendant, because he totally kept his cool, even smiling throughout as he repeated my one and only option as he attempted to direct me elsewhere.  If he hadn’t, the conversation would have escalated and then I would have seemed as mean or cruel to others as I did to Porter.

January 2, 2011 "Tough X 10"

1. He not only survived, but flourished after a traumatic birth. (note: From the beginning we were warned of all that Porter might not do – he might not live; he might not talk; he might not walk; and on and on the list went.)

2. He rolled a bowling ball off the couch and onto his foot, didn’t cry (note: Porter was under Meja’s lone supervision for all of 20 or so minutes at the time – I was going out of town for work and Clint was driving me to the airport when it happened.)

3. After finally learning to ride a bike, he rode himself to the point of fatigue and crashed into the pavement in the middle of the street. He lifted his arm and there was a thumbs up, followed by                a jump up and remount. We had to force him to take a break. (note: Porter regularly comes home from playing with bruises, scrapes and blood, as I’m sure many other little boys do, but his have to be pointed out to him.)

4. A few years ago when playing recreational soccer, he was nailed in the head with the ball. Players gathered around his bent over body, and a few seconds later he picked his head up and         there was a big smile on his face followed by a thumbs up and “I’m okay.” (note: We’re not sure whether Porter has a naturally high tolerance for pain, or if it’s a result of his brain injury, or if he inherited from me, but it’s definitely there.)

5. He swallows medicine and rolls up his sleeve and takes his immunizations like a woman! (note: We used to have to chase him around and hold him down. And of course afterwards he would realize that it wasn’t that bad AT ALL!)

6. He recently asked 13 girls to be his girlfriend in one day, rejected by all (note: Porter’s been a ladies man since kindergarten when he proposed to two of his classmates in the lunchroom, same day, then stood between them and held both their hands in the recess line.)

7. This morning, after being tired of it bothering him the last couple days, he pulled out his own molar. (note: Porter says he’s going to put this one under his pillow and if he does it will be a first. He doesn’t like the idea of someone creeping into his room at night. I know, not so tough.)

8. Porter has the opposite effect on the “toughness” of others. He turns people into softies by using his charm and personality to put smiles on their faces and warmth in their hearts. (note: I’ve seen him do this to Harley riding manly men as well as many other men who believe themselves to be pretty bad ass.)

9. He’s been working hard to overcome the anxiety he’s been suffering from since a toddler. With the help of his “worry” doctors (psychiatrist and psychologist) he’s been understanding his need for medication and learning coping strategies as well. (note: It has been tough as a parent to watch how Porter is affected by anxiety and the last year has been the toughest. There have been more times than I care to admit that I’ve felt not tough enough to fight this fight. So, along with good vibes, I’d like everyone to send a little strength my way as well.)  

10. This spot is reserved for a situation, event, or story that serves as your example of Porter’s toughness. If you choose to share, great! If not, that’s okay too, because I know you will carry that memory with you anyway.

October 24, 2010 "Horrible or Humorous"

Though it might sound like it, this is not a post about the upcoming Halloween Holiday. It’s about Porter’s first visit to the psychologist and how I didn’t know whether to laugh or cry at various times during the appointment. We are still on our quest to find answers to help Porter with his “condition,” a condition we’re not even sure about. If he doesn’t have cerebral palsy does he have dystonia? And how does the anxiety/OCD behaviors fit in? Though starting him on medication last Spring was definitely helpful, more than helpful, some behaviors are ramping up again.

When I picked Porter up from school last Thursday, his special education teacher caught me in the hallway, wanting to quickly relate a concern. She told me that Porter has been randomly standing at attention in class, for just a few seconds at a time, and seems to be focused and mumbling. Thankfully, I already knew this so I neither laughed nor cried. He has been doing the same thing at home, at the store, at Scouts, playing outside, at restaurants, etc…. I explained to the teacher that we were actually headed to see a psychologist to try and figure stuff out.
The appointment started out with me explaining some of my concerns to the doctor. Porter still has an obsession with the moon, looking out his window several times before he falls asleep. Then I explained how Porter feels the need to make sure I’m really his mom by regularly attempting to remove my head from my body when he’s giving me a hug (horrible). I also explained his latest compulsive behavior of standing at attention at seemingly random times (which he demonstrated throughout the appointment). And the list goes on and on.
The doctor began telling Porter how he’s in charge of what he does and how they were going to work on getting that “thing” under control. He said, “It’s like a monster.” Porter said, “Monsters are fake.” Doctor “Okay, maybe like a dragon.” Porter “Dragons aren’t real.” (humorous) The doctor tried to explain how the monster or dragon was just a symbol and it could really be anything, and Porter should draw a picture of it. “I can’t do that.” “Why not?” “Because if I draw a picture of God, it might not look right.” (horrible)
So Porter thinks it’s God telling him to stand at attention, or what have you, because if he does it, the people in his life will be safe. The doctor looks over at me and tells me as an aside that preoccupation with God is totally typical for kids of Porter’s age. But Porter is not a typical kid. He’s extraordinary. I told the doctor how it was hard to understand how an overly social, outgoing kid, uninhibited by his disability, could also be so paralyzed and controlled by fear and anxiety. How a kid that can manipulate a computer, spout off sport’s statistics, and problem solve his way in or out of anything feels so defeated and dumb when it comes to school work.
But that’s Porter, a study in opposites, which brings out the same in me. I regularly vacillate between laughing and crying when it comes to Porter, sometimes laughing because he’s humorous, sometimes laughing to keep me from crying at the “horrible” things that he does, the things that make me worried for him, for his future. Other times crying from laughing so hard at things like, “Mom, today I asked 13 girls to be my girlfriend and they all said no.” Really? 13? I’m not sure I would have made it past 2 or 3 and he went all the way to 13? Like I said, extraordinary.

September 20, 2010 "Buddy Walk"

Parker’s Buddy Walk was yesterday. On Monday, I found out that this year there would also be a 5K, so Lexi and I made a last minute decision and signed up. We thought it would be good practice, and a good experience to learn from before we ran our 10K in October. It was not the experience we thought we’d have, but still fun. We did finish in the top 10 (out of a dozen or so people) and we didn’t run a full 5K (the route was about ½ a mile short). But I did run around a 12 minute mile, which surprised me. I knew tand hat I wanted to step it up for the race, but wasn’t quite sure how to keep myself running faster than my normal very slow rate (15 minute mile), and not too fast (interval running) as to burn out. The answer was Cadence, an app for my iTouch. I am not a techie person, but this app is amazing. It took all of the music on my iTouch and arranged it in order by bpm (beats per minute). So I just set it at the bpm I thought would work, and off I went, jogging to the cadence of songs that kept me going and going and going. We finished the race, Lexi before me, and were happy with our efforts. We’re looking forward to our next race!The walk was fun, as always. Seeing so many cute kids, families having fun, and all of the support was great. Parker especially liked the inflatable slide and obstacle course. We could only get him away from those when he saw the train “zoom” by. It was great to see the performance of Rachel Coleman from Signing Time. Parker was following along in his own way, throwing up his arms, waving his hands, and singing. The walk was short and something Parker wasn’t too interested in, but we made him do it anyway. He survived, but was pretty much done after that. It was a beautiful but hot day, he had been going non-stop for a few hours, and after we ate, he was a crabby and stubborn little guy. Clint took the boys home and Lexi and I stayed for the raffle. Parker did get his name drawn and we got a big bowl full of movie treats. All in all it was a great day. Next year, we’re going to organize a team and do some major fundraising to celebrate Parker turning five. Stay tuned!

September 20, 2010 "Back to School"

We’re all back in school to varying degrees. I’ve been back to work going on seven weeks now. The highlight of the school year so far, going to my first Quincenera for a former student. This year I’m back in the classroom full time teaching health, and love being with the puberty ridden adolescents I teach. Other than that I don’t want to make an exhausting and challenging situation worse so I won’t do a lot of complaining, other than to say it really bites that it’s the norm for me to leave the house before anyone’s up and get home after the boys are in bed. Though it’s once or twice a week, it is happening with more frequency than any other time in my career, and I really don’t care for it. I have always usually been able to do either the morning routine and get the kids off to school, or do the after school pick up routine. Unfortunately I am able to do neither this year because of a grant our school received. Fortunately our nanny is back from last year and my niece who lives with us is also able to fill in. I just can’t imagine what I would do without my village. (Both the nanny and the niece are 18 years old yet constantly mistaken for Parker’s mother. I am old enough to be the nanny and niece’s mom!)

This is Porter’s fifth week at school. He’s in fifth grade and I’m trying to stay focused on the here and now because imagining him in junior high two years from now is enough to make me ask for the doctor to up my meds. Porter is definitely a character, very much his own person. He’s still unbelievably social and curious. He still loves to play outside and would probably live outside if we let him. And he’s more technologically advanced than I am. Since he doesn’t have a cell phone, he figured out how to text our phones using his email account. One night I tried it, and after a half hour of not being able to figure it out (we all know how precious time is) I called for Porter to show me how to do it. I still can’t figure out how he did it out in the first place. I think technology will be his saving grace.

For Parker it’s just his third week of school. He attends a Montessori preschool 3 mornings a week and a public school preschool 4 afternoons a week. He’s still small, but growing. He thinks he’s four going on forty. He will often decide to leave the house, through the front door, with car keys in hand (I still haven’t found mine from yesterday). He will attempt to get into a vehicle. He manages to do this under the supervision of 1-3 adults, depending on the day and time. This either says something about our supervisory skills (each one thinks he’s with someone else) or it says something about Parker’s determination and stealth. I just hope he’s not trying to pull these stunts at school.

As a teacher it’s quite amazing to think that parents give their most precious possessions to us for the day. As a parent it can be a very scary thing to do, especially when communication is an issue as it is with my boys. I’m just thankful that their teachers and the staff members at their schools have taken the time to get to know them. Though I do worry about their academic progress, more than anything I want to know my children are loved and cared for while at school.

August 8, 2101 "Did you date my mom?"

That was Porter’s question to every guy I introduced him to. Porter would extend his arm, grip the guy in a handshake and then ask, “Did you date my mom?” I have to admit that it took me by surprise the first time he asked, but it really shouldn’t have considering Porter’s interest in all things “love.” He’s already proposed marriage, to two girls at once. In kindergarten he got down on bended knee in the lunch room and asked Evie and Maria if they would marry him then held both their hands while waiting in line to go to recess. Though I don’t know if he’s made any other such proposals since then, I do know there have been numerous professions of love. Porter wears his heart on his sleeve, actually more like on his forehead in blazing neon.

So back to his interest in me, “Did you date my mom?” “No, we didn’t date.” “No, we were just friends,” and on and on it went throughout the afternoon at the family picnic. Then we walked up to Forrest, and instead of surprising me I was about to surprise Porter. First of all, I have to say that I didn’t recognize Forrest. I saw him when I first arrived, across the lawn, and wondered, “Who is that big, burly guy?” but didn’t have a chance to follow up as Parker was off and running for playground equipment. Over an hour later when talking to one of Forrest’s good high school friends I asked, “Where’s Forrest? I haven’t seen him yet.” To which I was told that he was the guy with the beard. So I actually had already seen him not knowing it was him. I immediately headed over with Porter. I couldn’t believe it! Forrest looked like a mountain man. We started talking, I met his beautiful oldest daughter, and I introduced him to Porter who had been staring intently since we had walked up. Porter shook Forrest’s hand and continued to stare.

Then it hit me and I said, “Porter, Forrest and I went on a date. He took me to a dance.” If I remember right it was homecoming of our senior year. Porter looked from me back to Forrest in stunned silence. He began to rub his chin, and then finally asked, “Did you have a beard in high school?” No. Forrest’s daughter was enjoying the conversation and contributed a story about how Forrest, when going through airport security, immediately gets sent over for the additional screening procedures. One of the last things Forrest said before I walked away was that he was going to shave for the dinner later that evening. And he did.

July 19, 2010 "High School Reunion"

I just had a great time catching up with old friends. Some I’ve known since elementary school, others I met in junior high. There were those I didn’t get to know until my senior year in high school, and a few I got to know better at my ten year high school reunion. There was even someone I didn’t know I went to school with that I met over the weekend. I’m sure it’s not hard to figure out that I was at my high school reunion, the 20 year to be exact. A lot of disbelief surrounds the event. The most obvious being that we cannot seriously be 20 years older already. But here we find ourselves, 20 years later, a group of people once bound together by our birthdates, addresses and high school continuing to connect with one another in old and new ways. I saw many former classmates I was hoping to see, but there were many more I would have also loved to catch up with. What a fantastic group of people we shared our childhood with. What varied and fascinating lives we have led over the past 20 years. What amazing perspectives we have to offer one another. How easily we picked up where we left off to enjoy our friendships once again. So does that really mean that the more things change the more they stay the same?

Change is an interesting thing. There were those with noticeable physical changes and those with seemingly none (Nikki who I’m sure could enroll in high school today and nobody would bat an eye, as well as our own Dick Clark, Chris Wright). Physical changes are sometimes hard to take, whether it is a more soft or doughy body, weight gain, scars from injuries or surgeries, wrinkles around the eyes, lack of hair, hair color, the effects of disease, the list could go on and on. There are also changes that are less obvious but impact our lives none the less: occupational changes; living arrangements and locations; births and untimely deaths of spouses, children, even parents; marriages, divorces, remarriages; and again, another list that could go on and on as well. Things are changing all the time, yet many are resistant to or afraid of it. Well, we’ve definitely changed since high school, and we have all definitely survived it.
I made a decision not to long ago to do more than accept change but to embrace it. For me it’s really the only thing that I can count on which sounds a little like an oxymoron, counting on something is in a continual state of flux. In a way I guess that means that I also don’t count on anything, at least not to the extent that my life will be “ruined” if a situation doesn’t turn out how I thought it would. There is a lot in my life I didn’t expect to happen to me like having children with disabilities or getting cancer at 34 years old. I saw many classmates who also didn’t expect things to happen to them like divorce, disease, unemployment, and loss of loved ones. But more than the challenges, I saw the resilience. It fed my soul to know I was not alone in experiencing some of the more difficult things life has to dish out, but also that I am not alone in choosing to learn from and enrich my life with those experiences. I felt the positive energy of people all around, living the life unfolding in front of them, making the best of some not so great situations. Thank you all for your incredible examples!