In the Air with Peter

Traveling with Peter always made our life a bit more interesting. When the family was young, we liked to pack them up over spring break, join our friends, and fly someplace warm. Because we liked to scuba dive, those warm places usually ended up to be in the Caribbean. So, off we went, down south. Now, Peter loved to fly and getting Peter to the airport and on the plane was somewhat "uneventful", although everyone in the travel group was "assigned" to keep an eye on Peter so he did not take off in those large airports. In other words, all eyes were on Peter because, Peter, had also developed an uncanny sense of finding elevators. Oh, yes, did I mention that along with flushing toilets and opening garage doors, he could spend hours in front of elevators watching the door open and close. Or, you might find him on an elevator taking a ride. The trick was always figuring out which floor he chose to get off. So panicked moments were spend riding up and down elevators pushing every floor button so he could be found. Again, he was nowhere off for the worse, however, I would have just lost 5 pounds of sweat as I rode up and down trying to find the child who was on the seventh floor or was that the eighth?. So, everyone, made sure he stayed close, because losing Peter at O'Hara or the Miami airport always put a bit of a damper on the trip.

The bigger challenge however, came after the plane landed. You see, once Peter was on the plane, he was very content to sit, sleep, the perfect child, until..the plane landed. At that point, trying to convince him to stay seated until we stop, stand by me so we could leave TOGETHER...he was just not going there. He did learn keep his seat belt on, but as soon as Seat Belt Fasten sign was turned off, and the automatic rise of everyone in the plane to reach into the overhead, that was a signal for Peter to get out of dodge. Remember, now, he is tiny, so off he went, between people's legs, and right up to the front of the plane, smiling and wringing as he waited for the flight attendant to lift that big lever and open the door. For some reason, no one ever stopped him. As soon as that door opened, Peter must have thought he was in the 100 yard dash, down the ramp and into the airport at ninety miles an hour to find an elevator. And he did not stop until one was found..no matter what the distance.

So, where was I during this event? Previous to the flight, I had spent hours trying to convince the Special Needs department that I needed a seat close to the front. Some airlines were most accommodating while others were like..sure lady, everyone wants to sit up in the front. I persisted, called to higher levels, and usually was within a few rows of first class. However, it was those few rows in front of me that appeared as Mount Kilimanjaro, as I could not make a pass. My overhead belongings were already assigned to anyone who could reach, and my job, and only job was to get out of the plane as fast as I could and find Peter. Smaller airports were not an issue, it was those big ones, the ones that you needed to stop at before the islands, that sent waves of panic in us all. Asking politely to please could I get by, you see my son, the one that just went between your legs, you see he is on his way to get lost in the airport. Those words were almost always rewarded with another..yeah right lady, or the body block which implied..."don't think you are going to get passed me". What is it about people leaving planes? What is it that brings out the absolute worst behavior in people in order to be first to baggage claim to stand there for 15 minutes?
Once past the barrier of people, I would run, with no concern that this may look silly. I had my job and I was intent. Behind me was a family, always concerned that this would be the time we would not find Peter. By the time they were out of the plane, I had located the elevator and the child. Life was good, the next time we would land, it would be a small airport and even when he ran through security...it was island life and no one cared.
In all my years of travel, I will admit I have never once observed a bolting child like Peter. However, when I travel, and someone has a need to pass, I let them go. There most likely is a reason, because no one really wants to interfere with the body block and those stares one receives in trying to step out of the plane line.
So, until the next flight with Peter, I will store my special run down the ramp and into the airport as fast as you can shoes.

The Holday Inn

When the children were young, we had a family reunion with the Michigan relatives. Always an event we all anxiously awaited, as the kids could see their cousins once removed, if not by distance, by some perpendicular line drawn on a lineage chart. The half way point was chosen, and off we went to some domed hotel which featured a swimming pool in the center surrounded by rooms. Pack the van, pack the junk food, and off to drive around the south end of the Lake of Michigan as we headed for a fun filled weekend.

I especially liked these events, as I knew I would not be the sole observer of Peter as my parents would be joining us, and my cousin Denise, always offered her services to stay with the kids. A little break, complete with relatives that I had not seen in a year, one could not ask for more. Every year, we enjoyed each others company, covered last years events, and agreed to see each other again in the spring.

Peter loved these events, as he had many hands to keep him entertained and was able to join into the other children's activities. The year he was the age of toilet flushing, just the right height to flush, watch, and wring,he changed the course of events, as we knew it. That year, the weekend progressed with it's usual array of fine activities, if I remember I think there was even an egg hunt, prizes, shopping, swimming, dinners that all added to the perfect weekend. When the time came for us to leave, we packed our bags, and gathered to do the annual hugs and see you next year event. It was a group of around 20ish, so the gathering and the hugging, was done expediently, as we all were in a hurry to return to our abodes, however,it did consume a small chunk of time. Somewhere in that chunk, whether it was one of those assumed moments of "I thought you were watching him" or one of those moments where you just put that pint sized Speedy Gonzales down by your feet and try to entangle him between you knees, he escaped. Gone in a flash, no neighbors to retrieve him here, and he was gone. Gone for an incredibly long period of time. Noting he was missing, the hugs and goodbye session turned into a hunt. Everyone participated, and as the time pass, the search became more fervent. Peter was not to be found in any relatives room, near the pool, near the game room, near an elevator, and most certainly not near a door.
Enlisting the help of housecleaning and security the search continued, and I started to conjure up those "what if thoughts" as we could not find him and time was passing.
We were really running out of places to look. Finally, and I do not know how he connected the dots, but he always was a very smart person, my Uncle Terry found Peter in a room where the occupants had left, standing in the bathroom, yep, you guessed it, calmly flushing toilets and when Terry appeared wondering what was the big deal about him missing anyway??? By that time, the sweat was running down my head, and I would guess the majority of others.

Now if you think of a huge busy hotel chain on a Sunday morning when everyone is leaving, and you think of the large number of empty rooms, and think of those heavy doors to those rooms that automatically, I know I am still amazed that we found Peter. Eventually, he may have been picked up by housekeeping and put in the lost and found, but really, that would have been hours.
The moment of Peter finding is still fresh in my memory, as I can still remember the fear of not finding him, and the absolute relief when we saw him there in the abandoned, unclean room flushing away. Not one bit concerned that now, about 40 to 50 people were seeking his appearance, and soon the police would be involved. When, one finds Peter in these situations, he would just look up at you, give you that smile, like "life is good, it is a good toilet afterall", and those conversations to nowhere about not running away, you might as well save, because to Peter those were a meaningless set of words.

So that weekend Peter gave new meaning to our family reunions. He added the joy of being found, another tale to tell and after that year, he was never left out of any one's site...and the famous "do you know where Peter is" was spoken every two hours.

Never Assume

As Peter was growing up, it was obvious to us that it would take a family to raise Peter and a neighborhood to "pitch in". If asked how many children I had, I would say "three, no make that four, Peter counts as two". When Peter was up, Peter was up and going full force waiting for the perfect opportunity to make an escape or do his "business" as in flushing toilets or exercising the garage door. Sara, being the oldest took on the responsibility without looking back, with no questions asked. Michael, when Peter was born, was still a toddler, not yet three and finding his way. I know, Michael lost some toddler years in there as I sought out help to determine what could be done to "fix" Peter. Can you read the guilt in between the lines? I do remember that Mike never took out any anger or frustration with Peter, and provided him with the rough and tumbly stuff only a brother could add. And, Peter loved it. Peter, would just wait until he could play around with Michael, after all he was his big brother and his favorite brother. Sara, of course, being his favorite sister. That was easy....

When Peter was in his early childhood years, pre-kindergarten, we were invited to a Parent's or Family night at his school. We packed up the van, and headed out to see what Peter was learning. Engrossed in the evening's event, meeting other parents, and keeping track of Peter, we "sort of" lost track of Mike. At that time, Mike was probably in kindergarten or first grade. Mike decided he wanted to check out the other classroom across the hall and started playing with a game in that room. The time came to leave, and the kid's father announced he was leaving. I, assuming, he picked up Mike and took him in his car, gathered up Sara and Peter and we headed home in my van. With three kids, we usually did the divide and conquer, so one would take one child and the other would take two.

Arriving home with Sara and Peter, I again assumed that Mike was taking a shower and was not concerned when I did not see him. You know that saying about "ASSUME', well it is true.

After time passed, I asked a question about Mike only to realize that he had not come home with his dad, which was about the same time the principal of Peter's school was calling to tell us we had left a child behind. Now...that was embarrassing..talk about making a good impression with the principal. After, profusely apologizing and explaining that we really were good parents, I know I broke the speed limit to return to the school, which was located a distance from our house.

I arrived at the school, less a speeding ticket ,and there in the doorway, stood Mike, with a good friend or ours, Sue who noticed he was without parents. Sue, calmly reassuring Mike that his mom really did love him, this happens all the time, and your mom will be here shortly. Once again, saved by a helpful hand, a caring person who understood.

So, today, when I see Mike, I will ask him if he was traumatized by the event. I do not recall that lament, MOOOOOM, when I picked him up. But just to make sure....I will ask 20 years later!

The Security of Doors

Peter actually seems to find security in doors. If you cannot find Peter, he is most likely near a door. Or, if Peter does not feel comfortable in his environment, he will find a door and there he will stay.
At a very early age, Peter had introduced himself to our new neighbors by placing himself inside their door frame. Around that same time, at a family Fourth of July party, in a Wally Cleaver neighborhood, Peter once again went in search of doors. Thinking Peter was once again under the watchful of eyes of the men in the crowd, I calmly sat talking to the female contingency. Then the call came out that Peter was missing. The boatload of children and the males, who really were not watching went on the hunt. Since Peter was not on familiar territory, no one brought him back. After much searching, Peter was found safely squished in between the screen door and front door of an unassuming neighbor. Peter, standing there, patiently waiting to be rescued. At that young age, there must have been something very special and comforting about standing between a screen door and a entry doors.
Peter, can also be found at the door if attending a play, a concert, really any place that requires one to sit and be entertained. There is conversation that takes place on the way to these events, where Peter will convince me that this will be the time he would come in, and remain seated the entire feature, offering me reassurance that this would be the time! At times, Peter may begin sitting, but I would have to say, always bolt at some time and heads for the door, never to return.

During these times, Peter usually becomes new best friends with the Security personnel, ushers, or whoever is closest to the doors. I, running up to the doors, as in the Kohl center in Madison at a Badger Band concert, or at a smaller venue, as in a play at a local high school, would be reassured that Peter is perfectly fine and his new BFF is now in charge. Go back to your seat they say...he is just fine!

One of the best moments that Peter became acquainted to a new best friend was a Christmas program that included members of Cirque de Soliel. Having just spent one and a half hours in the car, holding the "now you will sit with us during this performance" conversation, and anticipating a great evening, I honestly, thought Peter would accommodate my need for him to sit. Why, I even had the Special Needs seats. Unfortunately, we arrived after the performance started, and Peter wanted nothing to do with sitting, but preferred the spot by the door. It was not long until a female usher, came over to inform me that she would watch him and I should enjoy the evening. Occasionally, she would come over to reassure me that Peter was just fine. By the end of the evening, Peter and her were arm and arm singing Silent Night...a major undertaking! When you read about Silent Night...you will understand. Tears running down her face, she told me that this was the best Christmas ever, that she was so moved by Peter. I, of course, joined in the tearful moment, as I could see how Peter had left a special place in her heart.
So, again, a door, a secure place for Peter, but also a place where friends meet, and where others have taken over the responsibility of Peter for a short period of time, giving them a special moment with him and for me, an opportunity to pay attention to what is in front of me.

Peter Slammed-God Opened

I am thinking that during Peter's life he was into major door slamming while God was into major window opening. Remember that mantra of mine, "When God closes a door, he opens a window". When Peter was growing up, often I was asked the following questions, “What will I do in the future, What will you do when Peter is an adult?” One thing I never did was go beyond one day at time. The future was going to happen, no matter what, worrying and fretting over what might be was going to do me "no good". So, I lived, one day at a time, denial has always been my best friend, and any psychologist may say that is unhealthy, however, it worked for me,taking one day at time. The coolest part of not spending time worrying for me, as just when I was always, and really I mean always, on the verge of "oh, what is the next step, How will I handle this?"... a window opened up. Peter has had so many windows in his life, it is really incredible.
One of his earliest windows was our friend Jean, who was a pediatric ophthalmologist who guided us through those early months of blindness. And Jane, the nurse who appeared out of no where that gave me the direction to go the Waismann Center.
But, it was just not people who were windows..it was programs. When Peter was around 18 months, Kenosha began an early childhood program, at that very early age, Peter received help, and met the Kugler twin, Lauren and Leigh, or as Peter called them both LaurenandLeigh. You will hear more about them later. That program continued and Peter attended school at at very early age, three, when I literally had to lift him to the bus, because he was so small.
Inclusion, another window, was just beginning in the school district as Peter entered kindergarten and first grade. He was one of the first students included in the local grade school and what a wonderful experience that was!! Such great and well meaning staff at Southport school. That continued throughout his junior high school and senior high school years, where it ended at Indian Trails, a work to life transition program, complete with great teachers.
When Peter was a bit older, and I went back to work, and was truly at a loss as to how I was going to get him after work, there was no after school care at the junior high and senior levels. That year a wonderful program called TRACS opened up, where kids with Special Needs could attend an afterschool program where he could swim, play, and spend time with kids just like him. That was such an amazing gift, a window,a blessing and it came at the perfect time when I really needed help.
Another window, I also needed help in the morning, the really early morning, and through my hairdresser, I found Heather, who would wake up in the middle of the night and get to my house, so I could go to the hospital and Peter could go to school. Peter loved Heather and her chocolate chip pancakes...another window..a true gift!
And, than, as Peter was getting older and it was Peter and I, 24/7, I really did not know what to do. He would be out of school, I was working, where would he go. I began looking for help for the weekend, just a break for me and Pete. And that is when I found Peter's group home, a phenomenal place where he now lives with LaurenandLeigh, and three other buddies from his high school with an amazing staff. Just like a "frat house".
So you see, just when there was a need, there were windows. Just when I thought there was no hope, magically, there was a window.. a new program, a house, a person.
So as Peter kept slamming, God kept opening. And life fell into place.

Slamming Doors

Peter’s love for doors not only focused on the garage door, but he had a different “love” for other types of doors. He particularly liked heavy metal doors which he engaged when he wanted to and wants to express himself. Peter, a man of few words, does not communicate his needs, concerns, feelings easily. If you ask him “What did you do today?” You will hear a one word“ I dunno know” which comes from a closed mouth. A skill he has developed over the years of speaking with his mouth closed and still being able to convey his message. The “I dunno know” can refer to just about anything. Peter, what did you have dinner? That would be dinner you just ate 5 minute ago…”Idunnoknow”. Mmm, Peter, see it is sitting on the table….oh! That dinner! Referencing what was done during the day, you will definitely receive a "iduunoknow", as that was hours ago and long forgotten.
In order to get Peter to speak when he was younger, more in his teen years, I would pick him up from after school care, begin the 15 minute ride home, and start talking about my day. If I assumed he was having a bad day, I would conjure up stories of my bad day, and how someone really “pithed me off”…I knew he could relate. In this effort, there was hope that randomly a voice would emerge and some short sentence about so and so, or how he did not want to go swimming…or something that made him have a bad day. This could be within minutes of my dialogue or hours…words hopefully would spontaneously just come out of his month and, when I was within hearing distance.
There was a clue to Peter having a bad day. The door slam…evidence to me that Peter was tired, hungry, not feeling well, or something just set him off. Now in our house, the only good door to slam to make a statement was the metal door between the kitchen and the garage. He perfected the talent of slamming that door so hard, I thought the house would fall down. Things would shake on the wall…our own little mini earthquake, right in our home, sometimes on a daily, hourly, basis. Mike or Sara may have picked up Peter for me, and in would first come Peter, and SLAM. I had this way of flying down the steps to begin to slow down the potential catastrophic events that may occur after the slamming. Mike or Sara, having just had the door slammed in their face, with a panic stricken look, would say…we gotta feed him mom. Interestingly, food was almost always the cure for Peter’s bad behavior.
Many hours were spent on the time out chair, and than as Peter aged, he would be “grounded”, all in an effort to decrease the amount of times that door would be slammed. Grounding meant taking away a privilege such as watching TV, or playing on the computer. Of course, you know, grounding always meant as a parent you ground yourself, because now you sit and stare at each other. You cannot do anything, as that would allow escape time, and you know where that is heading!
Peter still has difficulty expressing his needs and still will slam a door when he is upset. The grounding, the hundred and one conversations about just telling me how you feel, has not quite set in. Hopefully, over time, Peter will be able to say he is not feeling well, he is hungry, he needs a hug. Presently, door slamming still remains the key to how he feels.
So, door slamming..in our house has a new meaning. It is a part of a conversation..it is a feeling..it is communication. Think of that next time you shut your door...oh go for..if you are having a bad day...just slam it!

The simple joy of a garage door?

Peter has given me alot of freebies in my life and like I said, taught me things I could have never learned through any course or seminar or self help book. I guess you could say living it and giving it through and by Peter. Recently, I told you how Peter taught me how to handle embarrassment. It was that rather loud moment in the library when the siren was ringing that I just gave it up..embarrassment that is. At that point, I had either gotten used to the moments, decided I did not really "give a rip" anymore, or just came to grips with it. For whatever reason, embarrassing moments were just opportunities to laugh about the situation.

Another one of Peter's gifts to me is his ability to just enjoy the absolute simple things in life. Peter really does not need much to make him happy, and in that simplicity, I realize all those things that seem so important at times, put in perspective, aren't really necessary.

One of Peter's loves is garage doors. The sheer going up and coming down of garage doors elicits laughter and cries of joy. A garage door. Up and down. If only life was that simple. Now this simple gift of enjoyment did come with a bit of a price. The garage door, has two springs. You see, I am well versed in garage doors as I am the proud owner of many new springs. Those springs can only go up and down so many times. I am also on a first name basis with the garage door company. Why the last time I called, they asked about the family, how has life has been. Not your usual garage door business questions. They like us...you see, I have paid for all their children's college education through garage door repairs. The last time I was told, this garage door can never be fixed again. It is on it's way to garage door heaven, being blessed by Peter regularly.

I know it is in those "autistic like" behaviors that make Peter attached to the garage door. In his escapee days, he was often found playing in someones garage. When the neighbor who he was visiting, heard their door going up and down, they would find Peter and bring him home. Going for walks, Peter had a need to want to shut any open garage door, so conversations centered around how those neighbors really needed that garage door open and no, you cannot shut their door, and if I would have looked away, a beeline would have been made for the door. It was like a magnet pulling Peter to the switch.

Because he loved these doors so much, and we were trying to cut down on garage door repairs, we tried to be creative and found toys with garage doors that opened. Jackpot, we thought we were so smart. Only they too would break. We also developed unwritten garage door rules at our house, that state only Peter is in charge of opening and closing. Often I would hear Mike explaining this to his friends, warning them not to touch the button as they looked on with this somewhat confused look. And Mike, he was serious...do not mess with my brother's garage door, man. To this day, we have garage door conversations with our guests.

So this door,this simple garage door can keep Peter occupied for hours. To Peter, it is entertainment, intriguing, joy, so simple, so rewarding. Really, think about,if only we could find joy in something that simple! As Peter recently told me..there's nothing like a good garage door.

When it wasn't summer

So what did Peter do when it wasn't summer and when he was not playing hide and seek with his family and neighbors. Does it surprise you when I say he had other tricks up his sleeve? Do you remember the story of Peter and I going to UW-Madison and the Waismann Center when he was young. During one of these visits, in addition to his diagnosis of Severely Cognitively Disabled, Peter and I were told that he fell into the gray area of Pervasive Development Disease, also known as Autism Spectrum. Peter did, and does have autistic like behaviors which have changed over time. One of these behaviors is wringing his hands when doors close. Other repetitive behaviors, that I will begin to mention, were those behaviors that caused him to carry out his business. One of his Businesses was to flush toilets.

So replacing running through the neighbor hood at amazing speeds, you could find Peter in one of our four bathrooms. Why I thought four bathrooms was a good idea when we built our house, I will never know. For Peter, four bathrooms was heaven, a place to escape, a place to carry out his business plan for the day. He followed the same routine, mom is busy or distracted, she is not paying attention to me, so off to flush I go. Flush and watch and wring my hands...that's the plan. Flush and flush. Flushing really wasn't a big issue, except for the major increase in the water bill. But WHAT was flushed became the concern. Peter, unbeknownst to the rest of the family, found great joy in flushing items down the toilet. Now, we did not catch on to this, until things would go missing. Soon, we resorted to locking all the bathroom doors and the only entry was by using a paper clip to pop the lock. However, soon the clips were left inside, door was locked, and when you have to go....idea was only SO good.

The flushing continued until one day, our septic system backed up. Not knowing the cause of the problem, the honeywagon man came over, dug deep into the system, and to his joy he found shampoo bottles, many and I mean a congregation of Fisher Price figures, (remember those cutsie little people that fit perfectly down a toilet, well ours all went for a swim in the local spetic pool), toothbrushes, and brushes. If it could be flushed, it was floating. Standing at my sink that day, gazing out to the backyard, I witnessed this man looking as if he just discovered gold. He came pounding on my window..."Look, Look , he called. Look what I found!" begging me to join in his excitement. Obviously, he never had experienced such an event, as the joy radiated from his body. Leaving my post, traveling to the backyard, and viewing the floatees, I was hardpressed to start jumping up and down in glory. Instead, I was shaking my head!! An "Oh my gosh, can you believe this feeling"!! There were the farm friends and the animals from the train all taking a swim. That voice that went PETER, was sounding off in my head.
I am sure Mr. Septic System shared his jubilation with his friends. I know that day, Peter made one man happy. For me, it was just another day with Peter Labanowsky. I reinstated the paper clip locking system with new resolve. And for those farm friends and and animals..they found a new home...down under.

My Moon

Okay, so now I am all about the playlist. It is just so exciting to me. Again, it's the little things. I added the song "I Do Not Want to Live on the Moon" when I was searching for the neighborhood song. I remember that I really liked the moon song when Peter was growing up. Thinking back, I wondered what was it about that song that caught my interest so much? Then I realized why I liked it! There were days, many days, that I really did want to live on the moon. I really did not want to play the game of life anymore...not in a bad way, in case you are getting thoughts that I was majorly depressed. But that "my plate is full feeling", "stop filling my plate", "oh only if life could be"....So, my escape..the moon or probably anywhere else I would rather be, just not in the present. What I liked about the song is it made me think...the grass is always greener somewhere else..or at least in one's mind it is. So going to the greener grass or the moon or being that "astronaut" seemed to be so much easier. But in that very simple song, one can take a make believe trip to the sea or the forest, but just to visit, to get away. And, when I sang it and I went to "the moon and looked down and saw all the things that I loved"...I knew I would miss my life down here! And that is when I realized my moon was here, in Carol Beach, with great neighbors and friends and family. Neighbors who not only understood, but help. It sort of was it took a village to raise Peter theory. And from above, I saw Peter, who would come up with a new trick tomorrow, make me laugh or cry, and I would love my life.

Who really are the people in your Neighborhood.

Now that I have my song to go with my neighborhood...life is good...I will continue to ponder the stories of those wonderful people who populate the "the hood". Last weekend I spent time with my friend Sherry, who happens to be one of the friendly neighbors. Spending time with Sherry, brought back this memory, tale, story..whatever you would like to call it.

Sherry and Jim's son James was Michael's age, so when the kids were younger we would often get together and have family gatherings or picnics. Always fun to do, as you could include the kids and not need to worry about a babysitter. One nice summer weekend day, Sherry had invited the family over for a backyard picnic along with several other mutual friends and her sister's family. It was a perfect day, and since Sherry's house is situated on Lake Michigan, the kids would definitely spend time in that water..after all ,kids do not mind the cold water.

So, as the day progressed, I remember sitting in the kitchen, a cool summer drink in my hand, and carry on an adult conversation with the female entourage. The kids and men were all outside, and I was confident Peter was safely being watched by one of the many children or male adults. Nirvana...I am thinking..peace and quiet with the girls. I knew on thatday, Peter would not escape under so many watchful eyes, and the water would keep him busy.

We sat and chatted, and drank our cool drinks, and the men took the kids to the lake to go swimming. The children neatly placed all their shoes on a large rock and then proceeded to waddle and wiggle and splash in the water. All was good. Only shouts of joy and happiness filled the air between the crashing of the waves. The perfect Norman Rockwell painting.

No, Peter did not escape that day, nor did he advance too far in the water, he had other plans. While the men and the children soaked in the sun and enjoyed the water, Peter decided those lovely lined up shoes needed to go to Michigan. So, he sent them, flying in the air, and into the water off of Michigan City, never to be retrieved by one living in Wisconsin. Just like pitching pebbles, but shoes. The shouts of joy turned to shouts of "There goes my shoes"!.

After hearing the news, I remember taking Peter home, saying something about a nap. I also remember I must have walked home barefoot, most likely silently stomping, because I still remember the sharp pains on the bottom of my feet and the tears streaming down my face, thinking could one day just be normal?

I know I took it harder than those who lost their shoes, as only one mom accepted the offer to replace the shoes. The rest just laughed and took it in stride. So, start humming..those are the people in my neighborhood, that people that I get to meet each day....lucky me!!

Adding my Playlist

A week has past since I last sat down and wrote a blog. I was determined this past week to reorganize my blog, as the old posts seemed to disappear, and I wanted to add music, as in a play list. Of course, pushing mouse buttons was not getting me anywhere, so I enlisted the help of a very friendly and positive computer person named Meg. Meg, is one of those persons that when you just click the mouse, she makes you feel like you just won the gold medal in mouse clicking. If there were more people like Meg in the world, there would be a million more smiles. And Kelly, Sara's sister-in-law, whose blog I covet, and want my blog to look like her blog, was also asked to particpate in the reorganization process.

Meg, the very friendly computer person, helped me find my old posts, and gave me the confidence to "just play". I always think.."just play" turns into "just delete"....but throwing caution to the wind, I played all week and became better friends with my blog site.
Unfortunately, my playing could not get me to connect the dots on how to add a play list. You see, on my mission to add a play list, I downloaded I-tunes and paid for songs, and downloaded Podcast..really what is a podcast..I do not know, but it is on my computer now. I tried to drag, click, I called Sara, asked Mike, really anyone passing by, and those songs on my play list, just sat on my play list in the corner of my computer, never to cross over to the blog. It just seemed so simple, but the songs were not going anywhere.
Then, a miracle! Kelly had time to break away from her family and the two hundred other children she watches...really, not that many, and sent me an email on how to do this...so simple, if you just have the directions. Now, Kelly, really needs to get a job in IT....thank you Kelly, you made my day. Of course, I had to make the usual phone calls.."I did it!" sort of thing...so exciting. Really, it is the simple things that just keep me going.

The play list, is actually mostly songs that relate to Peter. The Silent Night Story has yet to be posted. But I thought I would add the song, because, I would not want to do this over again. And, "Proud to be an American" that will also come up in the future. When you read the neighborhood stories, please pick "Who are the People in your Neighborhood"...It just goes with the territory! And "We are the World..you know where that belongs. That is just a good song, anyway. If you do not want to listen to the music, you can turn it off or change the song. "Shout to the North"..I was thinking the "Free High" blog.
So as you blog, sing, hum along...it just gives you the good all over feeling!!! And if I haven't said it before....Have a nice day!

more on neighbors

SO, every neigborhood has a least one of them. Luckily for me, there was only one of them, but unfortunately, them moved in behind us. For some reason, them, thought they were moving to Highland Park not Carol Beach. You see, in Carol Beach...everyone knows your name, no one puts up fences, we are just one big happy family who really had nothing better to do than bring Peter back home. So, shortly after them moved into the house, it was announced that Peter should not step foot on their driveway. With this annoucements, came the thoughts, "are you kidding me...or come on, you cannot be serious." Be serious, them were. So now I am thinking, how do I tell this young person, who really, and I mean really, literallly, does not understand the meaning of no, that he cannot step on them's driveway. I actually conjured up stories in my head of telling him about the nasty witch that lived in the back yard, thinking I could maybe scare him, but the good overcame the bad thoughts, and I just hoped he would walk around...yeah right!!! After the announcement, I informed the kids and the Carneys to make sure Peter was not on their driveway....knowing they might, maybe, no, not a chance take care of that issue. That summer progressed without incident or driveway stepping, and than the unthinkable happened. Peter has this uncanny sense of "getting back" (nicely of course). I did my usual trip to the bathroom, Peter's radar went on, and he was gone. Only this time, no kids, no Carneys, to help me out. I was on my own. So, realizing the escape artist had left I ran to the Town Club, and searched the usual crime scenes. No Peter. Did I mention that calling Peter and thinking he would come was just not something that occured in his life.

Finally, by this time, hands sweating, heart racing, I saw the mailman near them's house, so I asked if he had seen a pint sized child. He pointed to them' house, and front door, which I must tell you, was ajar and it was than I knew. Peter was inside them's house. You cannot imagine the thoughts running through my head at that time. I ran to the door, yelled for him, like he would listen, but could hear a refrigerator door closing, so I knew he was there, probably making lunch at this point!. Now knowing thems were not home, I thought I could get Peter out, before there was any evidence, except them's minature attack dog would not let me in. Quick thinking, gave me the idea to grab some crackers and than throw the crackers so the dog would come out of the house., After retreiving crackers from my house, I threw the crackers in the yard, the dog came out, and you guessed it..out saunders Peter as if these things are a daily occurance, and what is the big deal mom. Now, my only problem was go get the dog back in the house!

Months later, at a neighborhood party, I fessed up to the events....they never knew and were actually very kind about the whole matter. Lesson to be learned...not everyone will understand your story or your life. Pardon them for their ignorance, because maybe someday I won't undersand their life story. And count the hundreds of other who understand as a blessing!

Great Neighbors

So, back to the early years of walking. After waiting patiently for Peter to walk, I did not realize that he really was just waiting to gather the speed, so that when he could walk, he would just run. As I said, he was tiny, quick, and could make it through just about any spot while I needed to run around, jump over, excuse myself, smile in hopes that I would have an outside chance of catching him. I was always a bit behind by the time he took off. Peter had developed an uncanny sense, which he still possesses to this day, like radar which informs him whenever I am busy or distracted. As if he has eyes behind his head, one minute he will be sitting contently, and the next...gone. The radar goes like this...she's on the phone, oh great...she is in the bathroom that gives me even more time to escape, oh look, she's trying to carry on a conversation with someone...revv your motor, she's not looking, going, going gone! And gone he would be. He became extremely adept at this talent in the summer months when the only door between the inside and the outside was the screen door and this door was quite easy for him to maneuver. Since my backyard and the Carney's backyard were almost one, the Carney kids (Shannon, Kelly, and Casey) were usually in the area along with Mike and Sara. So, about once a day, I would go to the bathroom, Peter who would appear as if he was involved with a toy, would patiently wait for the bathroom door to close, and off he went. By the time, I realized he was gone or not in the house, I would head outside, gather up the Carney's and my two and we would start the hunt. No one became very excited as this was a regular occurrence in the neighbor. We all had our posts, one would run to the Town Club, and the rest would scatter. And, as usual, someone either found him or a kind neighbor would bring him back. It was a fairly common event, and the neighbors learned that you did not just bring him home, you played a game of follow the leader and he came back. They led, he followed, appearing as if this is just life, just how it is. Peter was never at all concerned that he was missing. There was never a sign of danger or fear, just a happy smile to see us all again. So, in the case you have a special needs child, a good neighborhood with kind caring folks is a real blessing. I got lucky! I live in this great little area, especially when Peter was growing up, everyone knew him and kept an eye our for him. Thank you wonderful neighbors!!! You know who you are! There will be more tales of good neighbors, but until that time...know there is nothing like a great neighborhood who understand, but most of all, do not judge.

Talking

Around two-ish, Peter did start walking or running, however talking was a different story. Peter had developed the fine art of high pitched grunting and pointing for his basic needs, and being the third child, we were not really concerned. He was surrounded by four other individuals who were always ready to jump to meet his grunts. When we decided he really needed to verbalize instead of grunt, we did the usual, "No, you will not get this until you say the word", but only higher and louder grunts expelled from his mouth. Sherry, a good friend, and also a Speech Therapist, how convenient is that, offered her services and we started teaching Peter sign language. Now, if you have ever tried to learn sign language, that is not an easy task! I have great respect for those individuals who can move their hands faster than a speeding bullet in an effort to translate the spoken word. Through Sherry, Peter and I learned some basic signs, and made very slow progress. At that time, I was hesitant to start Speech Therapy at a clinic , as I really thought Peter would talk, and our insurance did not cover it. After awhile, it was quite clear, that Peter had no intention of using any intelligible words, so off he went twice a week to Speech Therapy. When I look back on that time period, I remember being extremely frustrated with the health care system, and part of that frustration, I now believe, most likely related to a bit of denial and "this is not fair" feelings that were still floating around my head. However, the frustration was outweighed by the benefits. By going to Speech Therapy, we were introduced to a very special person named Ginny Brydges. The name, Ginny Byrdges to this day, conjures up feelings of greatness!

When Peter first met Ginny Brydges, after an initial evaluation, she told me there was a good chance Peter would never talk. Of course, Miss Denial here, just looked at her and thought...yeah right! After weeks, no months, maybe even years, I am thinking around the age of four, Peter started talking. In this high pitched tiny little voice, words began to form. Phone calls were made, tape recordings were sent to those far away, and Ginny Brydges was declared a saint. How she ever, got Peter to talk, I do not know. But she did. I still hold the memory of Peters' 6th birthday party at MacDonald's. In walks Ginny Brydges, and you would think God walked in. The excitement in Peter seeing her and shouting "Ginny Brydges Ginny Brydges" still brings tears to my eyes.
In his early years of talking, Peter always remained a man or child of few words. His sentences were only made up of one or two words. Until one day, as clear as a bell, he loudly proclaimed..."Mike, you really pith me off, you really pith me off". Normally, this sentence may conjure up at least a rasied eyebrow. But not in our house! We looked at each, big smiles crossed our faces, and we celebrated. Calls were again made and jubilation abound in our house.

So, once again, God placed special people in our life's, who helped us walk the path. Maybe not as fast as we wanted to walk, but always there to assist along the way. Peter continued on with Speech Therapy all through his grade school and high school years, either with Ginny or with a school Speech Therapist guiding the way. just said!!!

Shelving Matters

I have been told by a very wise person that I am extremely good at putting parts of my life on "shelves" and that is how I deal when life becomes overwhelming. I really think the definition for shelving would be denial...but whatever, it works for me. Looking back at Peter's younger years, I know I was major shelving when it came to acceptance of the disease or syndrome or whatever you would like to call it. I guess the shelving allowed my to continue to think that one day Peter would wake up, he would be cured, or there was some special medicine to make this all go away.

During those early years, and after the Children's Hospital fiasco, I and Peter became BFF's with those people who worked at the Waismann Center in Madison. Peter and I spent many long days there having him tested, having him be a part of a study group, and trying new medication. I remember leaving early in the morning and returning late at night. Sara, already in grade school, was really not affected by my long absence. Mike, however, was always left in the care of a very caring friend, usually Sue Riordan. And although the stay at the Riordans, included a trip to Kmart to buy a toy, I always felt the guilt of leaving Mike, who was still finding his way as a toddler. So guilt and denial in my bag, I drove to Madison in search of a cure.

These drives were usually rewarding, as the visits provided hope. However, after driving through one of the worst snow storms, with only two tire tracks, all the way to Madison, and finding out that no one from the clinic was coming to work as the weather was too bad. I started thinking...what am I doing? Why do I have such a need to be here? Why did I have the need to put Peter and my life in danger? I guess, I was in search of a cure, an answer, and I was going to do the best to try and get that answer. I was going to do no matter what it takes to get this "fixed". So several years past, as we looked for the cure.

One day, after driving two hours, leaving Michael behind, I was put into a room with a large mirror on one end. Sitting there with a psychologist, who was asking me how I felt about my son being mentally retarded, (remember over 20 years ago, that was an okay phrase to use). I knew behind that mirror, was a classroom of students "learning" from my behavior. It was that day, that moment, that even though I am an educator myself and I am all about learning, I made a decision to stop the search. Stop looking for the miracle drug. So, answering the questions that in my mind were textbook perfect...I did get an A in Psychology 101, and hoping the students had learned something that day, I made the decision that this would be my last trip in "search". I would come annually, but no more of these one month trips.

What caused that great revelation, I do not know. It may have just been the tip of the iceberg, and I crashed, I reached my limit, but I knew it was time. Time to move on, time to accept what it is. I would think everyone in this type of situation reaches a point where they go from shelving to accepting. Each in our own way. As my mother would say...only time will tell. And time was what I needed to come to grips. I still remember fondly all those individuals at the Waismann center who listened, and researched, and provided the bridge for me to accept.

Going, going going gone!

It happened again last night as I was shutting down Peter's computer, which seemed to be taking a bit of time. As it was slowly closing down, I, for some unknown reason, thought "going, going, going...gone " and, although you may find this hard to believe, I thought of my mother's funeral and a smile, perhaps a giggle crossed my face. The sad memories have now past, and only the "good things" come to mind. This was the "good thing" that came from a very sad time. So, here is the story.

Grandma or my mom died 14 years ago of a heart attack, which left all of us in a state of shock and grief. Sara was in the ninth grade at the time, Mike in sixth, and Peter would have been in second grade and eight years old. Remember, although Peter was eight, he looked like a four year old and acted like one also. I remember he sat on my lap through the service..so size wise... small.
Peter, however, was the one that just when your heart was breaking added that light in the dark, that was so needed at such a sad time. At the very tiny funeral home in Beaver Dam, pint sized Peter with his very high pitched voice greeted those in attendance at the door and, as I was told, said, "Are you here to see my Grandma...she went to heaven" Very unassuming, yet so powerful!

The next day, if you can imagine an extremely large cathedral like church with amazing stained glass, is where we were holding the funeral services. Wrapping up the last part of the wake, previous to the service, my brothers, sister and I were standing in the front near my mom's casket. Dennis. my very astute cousin, noticed Peter had been missing for awhile, and came up and asked the question..has anyone seen Peter? (Common question during Peter's childhood). We agreed, he had been gone for awhile. At that point, we all simultaneously looked towards the balcony. With sunlight streaming through the breathtaking stained glass window located in the balcony, was a little boy skipping across it's width. We gasped, we looked at each other, and you know that laughter that replaces the heartache...all of us broke out into a silent roar, we were in church after all. We quite never knew what the folks gathered in the pews were thinking...I do not think we cared. It was just what we needed to keep on going.

Gathering up Peter, we than had to partake in what I believe is a somewhat barbaric experience, and that is the closing of the casket. We were ushered to the back of the church, the doors were closed so we could not see, and we stood there in utter silence. Until Peter smashed that tiny little face of his into the crack of the door and watched the whole thing. And what we heard, was going, going, going, GONE! Again, tears running down our cheeks, we could not help but find the humor in this little event. Even the very somber minister, was holding back the laughter.

My mom left us with many, so many good memories. And when it came to helping with Peter, she was a saint. Somehow, I know she was watching down, laughing with us, for it was Peter during those dark days that brought us the laughter through the tears.

We are the World

Every morning I wake up and think about what I am going to write today. Sometimes, I follow my plan, and than other times I get distracted by something I see on TV which leads me in another direction. That is what happened this morning. The early morning show was telling the story of the"We are the World" remake and how that song, 25 years ago changed the world and, how that song changed "famous people" into becoming more activists, and these "famous people" and many more, are still activists to this day. So from that news blurb, I thought of how Peter, about 25 year ago, was one of the first students in the school district to be included in the classroom. If you are wondering how I made that analogy, it is one of those free thinking, loose connections moments. Ever had one?
Back to the story. Previous to inclusion, children with a special need were not allowed in a regular classroom, but rather were sent off to some special school, not mixed with the normal or average child, and really kept out of the public eye. If you think back to your own schooling, I know I never saw any child with special needs, as if they did not exist. And the one or two that were allowed in, were treated as a burden...a person who was dragging the class down.
So, thank you God for inclusion...remember the window that gets open just when you need it. Since the beginning of his schooling which included Early Childhood, Peter was always in a "regular" classroom armed with an Educator Assistant, an Occupational Therapist, a Physical Therapist, a Speech Therapist, a Vision Therapist, and a very loving teacher. Together, they worked and prodded Peter to get him to speak, read, look, participate, whatever they could to make him progress. Peter, however, always looked like he could do it, just would not do it.....makes me again wonder what was going on in his head. Everything was a big effort to him and every milestone was a huge accomplishment. Every effort put in by those individuals have contributed to the Peter we all know and love. In turn, we felt part of a system, a good system that was working. So for me and Peter, inclusion, it may not be perfect...but I put it on my list of "Good Things".
Personally, I think the best part of inclusion is not just meeting Peter's needs, but it is the other kids who are now growing up with the special kids as part of their educational experience. In the younger generation I see a much better understanding of kid's with special needs and also the acceptance, yes, less prejudice, patience that life is not perfect. Often during Peter's school years, some kind, caring parent would include Peter in a birthday party or even invite him over for an afternoon. Those were the really special parents of children in that classroom. And those really special parents always made me feel a joy that went so deep into my heart, it really is hard to describe. Think about the recent cheering of those special kids that get to play one night on a real basketball team. Think about the absolute exhilaration on the face of the parents. How cool is that? Every time I see that, the tears stream down my face. So exciting!! Inclusion....a window filled with opportunity and love for us.

Peter and his eyes

In my introduction I did mention that we were told that Peter would be blind. We lived about a year, not really knowing if he could see. Day after day I did the "follow my fingers" move, but really could not assess if he could see. So we just waited and hoped. Interestingly, Peter loved laying upside down, to the point that he struggled on my lap to position himself so his head was hanging upside down. And there he stayed for extremely long periods, content. Later, we learned it was probably related to his vision as he could see much better in that position.
About the age of one years old, we knew he could see, just not how much. Happy though, that he could see some things. At first, the doctors felt he could see shadows, but not really sure how much or what. Later, it was determined that he could see straight ahead, but did not have a visual field above or below. That became quite clear when I had the cutting board open one day and he ran smack into it as if it was never there. So. knowing this, we tried to keep his visual fields safe. As he grew, still not sure what was going on with his eyes, he wore glasses. actually very large glasses! After time, we decided he could see "well enough" without the glasses and keeping track of the glasses was always an issue. Today, if you met him, you would never know that we thought he would not be able to see. Actually, he defies all odds as no ophthalmologist has ever found an optic nerve in either eye as it is obliterated by his colobomas. As defined by Wikipedia "coloboma (also part of the rare Cat Eye syndrome) is a hole in one of the structures of the eye, such as the lens, eyelid, iris, retina, choroid or optic disc. The hole is present from birth and can be caused when a gap called the choroid fissure between two structures in the eye, which is present early in development in the uterus, fails to close up completely before a child is born. A coloboma can occur in one or both eyes". And if you looked into Peter's eyes, he looks as if he does have cat's eyes. But who cares...he can see and that is all that matters. I do wish, I could get inside his head and see what he sees, just to understand...but I can't and he has adjusted so well!
As usual there is always a special person who took the time and patience to treat Peter. Growing up, he had a vision therapist throughout most of his schooling, and an extremely patient ophthalmologist. A thank you to the doctors who treated him by patiently encouraging him to look into the machines, taking longer than normal just to do an exam, and to Linda who kept tracked of him during his school age years, she was like a school angel. Thank you for your patience, you have a special place in our hearts.

THE GPS

Driving home from the dentist today, I looked down at that tangled mess of cords which lie beneath my right arm. I had to smile, as in that mess was my GPS. For some reason, oh that would be a Peter reason, things take on new meanings in our household. Items, such as a GPS, used to give directions, is one of Peter's favorite "toys". The GPS was given to me by Sara and Mike several years ago to save their extremely directionally challenged mother from landing in a cornfield in Iowa at 200 AM in in the morning. Although, very grateful for the gift, when I learned about my friend whose car was broken into to retrieve her GPS, I decided the best place for my GPS was to hide it well under my seat. So there is stays, unless Peter is driving with me. As soon as I pick him up, his first question "Where is it?" and then he lands face first, feet sticking outside the car to retrieve his friend, the GPS. Peter than loads some unknown address, and we drive, whether it is minutes or hours, we listened to our friend tell us, turn around, you missed your turn, turn right, no turn left..and Peter laughs. She never gets upset, she just keeps reminding us we are going the wrong way. After all, we really do not need her, that is why you stop and ask people for directions, isn't it?
We, of course, know we do not need directions, we just want to be entertained. The best one is "you have reached your destination" and there we are in the middle of nowhere...and we laugh! One of Peter's outstanding features is how it takes so little to be entertained, and how the laughter in that entertainment, just feels so good! So think of us next time you use your GPS...have you reached your destination?

Embarressment

Like I said, we carried this pint sized child around until he was 5 or 6 years, maybe even older. When Peter eventually learned to walked, he seemed not to just walk, but he learned to just run, rather quickly. And because he was so tiny, he could get into the smallest places, and between the most narrowest walls that I could not possibly squeeze past, so he would be gone before you knew it. These facts will play into later stories about the neighborhood, but right now I want to tell you about the embarrassment one suffers when others deem she is not handling her child appropriately.
Peter not only ran, he squirmed and squirmed until he was free. If that did not meet his needs, loud wailing in his tiny little voice ensued. So taking him, let's say, to the grocery store was always an major undertaking. Even those cuties little tie things which by now have probably been banned, worked to no avail. Those stressful grocery store visits almost always elicited supposedly well meaning advice from a fellow shopper or cold calculating stares that brought tears to my ears. I learned early on never, ever to be judgmental about those two year olds having a coronary that they could not have a candy bar, because, I knew the parent is preferring that child was also not having that coronary, and would really like to not be standing in the grocery line.
After years of those ungracious stares , what could be pages of free advice, and many trips leaving a store with tears running down my cheeks, thinking if only they knew...maybe if I put a sign on Peter they would understand, I finally "got over it" It was a defining, cathartic moment in my life which I, Sara and Mike will never forget. They also suffered from these moments, and hopefully, through them have learned.
One day Sara really needed to go to the library. Yes, I did not take my children to the library, felt the guilt because every good mother takes her kids to the library, but now with the addition of Peter, library trips would be considered catastrophic. However, Sara had an assignment due, and the library was the only solution to meeting that assignment. So off we went, all three kids in tow, to the library.
Once we arrived, Peter squirmed and tried to get down throughout the entire experience, and I was doing well with Houdini until Sara desperately needed my help at the card catalog.....remember those now archaic mechanisms used to find books? With doubt in my mind, I put Peter down and thought I had him pinned between my legs and the table. I do not know how long it takes for an individual to leave the card catalog table and run to the doors that say DO NOT OPEN, EMERGENCY EXIT, but I think it was seconds~ Do you know how loud a fire siren is in the library....LOUD! And yes, eventually everyone knew who was the culprit and worse yet, the culprit's mother, but something new had taken over my body....I did not care that everyone was staring at me, I laughed, the horrified look on Sara and Mike's face left, and they laughed. Why it was just Peter, being Peter, and you know how he loves doors...and I was doing the best I could under the circumstance. So I laughed, Sara and Mike laughed, the library lady laughed and all was good. Of course we apologized and explained, but this time the tears were those happy tears that come from laughing so hard.
And so, from that day on, the tears were less and the laughter more. Luckily, because that was only the tip of the iceberg in regards to "Peter Events" and teary eyes from laughter was the best answer.

Regrouping

In an effort to become more organized about blogging, and considering I may be called a blogging virgin....if there is such a thing...I decided I needed time to get organized, seek out advice, and learn more about my blog. So, I did my usual advice seeking in regards to technology and called Sara and Mike. Thank goodness for Generation X or is that Y. Doesn't really matter what letter they are as long as they have the information. Of course, I thought I could figure out the scanning photos part, after all you just push the button. I read the book that comes with the printer and convinced myself, I could do this! After two hours, luckily Mike walked in the door and within literally 15 seconds he passed along the information I was so desperately trying to find over the past hours. Okay, so where is the fairness in that? A master's degree and I cannot figure this out? The good news...I now can scan!!
With that new knowledge tucked neatly in my brain (hopefully) I decided to go through photo albums and old pictures to find ones that might fit a blog. You know, those old boxes of pictures you have in your basement that you are going to put in an album ...I think it is a New Year's resolution that I have every year. I dusted off the box, sat down, and sifted through countless pictures. Going through these pictures I realized that this tiny pint sized child, who we carried around like a toddler until he was five or six, was an extremely happy child. Why, he was just living his life as Peter, not knowing he really did not see above or below, not realizing he was falling behind, no, Peter was just slowly making his way in the world with a big smile on his face. I also realized that his sister Sara seemed to be always carrying him around like a sack of potatoes and his brother Mike was loving his little brother. Looking at all those family members and friends who were there to help and treat him as just one of us, was heart warming and quite fulfilling. I was also reminded of all his great teachers, OT's, PT's, Speech Therapists. Teaching Assitants that contributed to his growth. Great pictures and fond memories.
So, if you have a few hours, even if you do not, take some time, make a fire, grab a glass of wine, scatter those albums and pictures around you and enjoy!! It's cheap, it's entertaining....yep..free high!

A Free High

So today, I decided to zoom into the present as yesterday, I got a "free" high from Peter. I picked up Peter, who now lives in a group home...more on that later, to go to his favorite church. Peter was brought up in a very traditional quiet, did I say quiet, yes quiet which Peter had this need to change, church. Every Sunday Peter went to church and we sang the same songs, and said the same words, and Peter just never could catch on, even though I did the finger pointing thing at the words, and sang loudly into his ear...just did not get it. Instead he seem to have a need to go to the bathroom, fall asleep, and when it was all over, be the first one out so he could slam the large heavy oak door very loudly, ensuring that everyone in church knew he had left. Needless to say, we sat in the very back, and I tried extremely hard to leave during a loud song or as soon as I could. Really, church became a stressful event until one day a colleague told me about her church where the music was contemporary and, listen to this, you could even drink coffee and eat during church. Now how could that be, I asked. So we checked it out and Peter fell in love with church. The difference was amazing! He could sing the songs, clap, be noisy, and now he did not stand out, he was just part of the group.
So, on Sundays, Peter and I and anyone else that wishes go to church, show up, and we sing, we clap, we raise our hands, and we fill really good when we are done. Although the worship experience is quite fulfilling in itself, watching Peter is the "freebie" that no matter how you start the day, you cannot leave without feeling like something good has taken place. It is that feeling that only Peter seems to give that "what is really important in life feeling" that what are my priority feeling, that warm fuzzy, life is good and God is great feeling. As his sister Sara will say, "There is nothing like going to church with Peter". And she is right....a free high!
Yesterday, I have to admit, I was not the best example for a positive, caring, happy, thankful person. But, after one hour, there is was, I got it back, thanks to Peter and God, of course. If I could invite you all to see, I am thinking you would feel the same!

Counting my Blessings

When one spends time in a Children's Hospital, one realizes how fortunate they are. If you have never had the opportunity to spend sometime in a Children's Hospital, a Specialty hospital, or a clinic, talk a walk, look around. If you want to feel sorry for yourself, check out the environment, the ill children, cancer, missing pieces, so many things. I learned early on, that just about when I really wanted to feel bad about not having a "normal" child, I just needed to look around and count my blessings. Just when you think you got it bad...there is someone else who has it much worse. So, it's that get a grip moment. A stop feeling sorry for yourself moment. A thank you God moment. Somehow, I think those same people were probably looking around saying the same thing, because every child is special. They may even been looking at me and saying the same thing...gosh, I am lucky I am not them. I am sure we have all learned from what we have been given and along with everyone else, realize, we are the lucky ones.

The Pincher Grasp

I have to admit I never gave the Pincer grasp much respect. The grasp defined "as the grasping an object between the thumb and forefinger. The ability to perform this task is a milestone of fine motor development in infants, usually occurring from 9 to 12 months of age" . Did you know that a pincer grasp is a major developmental stage in your child's life?
Walking, talking all very important in the development of your infant, but the pincer grasp? I thought every child had the ability to pick up those Cheerio's, wasn't that a part of growing up? Did it just happen? Peter never had, never developed, and still does not have a pincer grasp. He did manage the Cheerio thing, but it was more like mauling a group of Cheerios on the high chair table and than somehow smashing them into his month. When I realized the importance of the grasp and the lack of Peter's ability to develop one, I remember looking at amazement at other babies grabbing the Cheerios,thinking how fortunate you are (the parent) that your child can pick up Cheerios...such a small task, one which is easily goes unnoticed, yet such a big event! I was envious of those babies with their tiny little hands, pincing up the Cheerios.
My point today,if you are having a bad day,if your child is a bit on the cranky side, teenage son driving you nuts.....think about..he or she most likely gracely ate the cheerios at a young age....rejoice!! What a gift! It's the little things in life after all....

Floppy Baby

Yes, Floppy Baby. That is the name of this blog, funny sounding, but true. Peter was a very floppy baby. He was 8 pounds and 9 0ounces, so a nice size, but oh so floppy. He did not sit up for the longest time. Whenever, he had his monthly pictures, you know the pictures you do for your kids. The ones that you do for the first one, so now, you do it for the second and for heaven's sake, need to do it for the third, because we must be fair. Actually, by the third child, Peter was more on the every other month plan. At those pictures, we would prop and hide and hold him up. And there he sat, a year old, with this happy grin, only seconds away from flopping over. Peter eventually sat up, but when he did, he would often lay his head of the high chair, as if it was just too much work to hold it up. He smiled and did his "OT" exercises with his head down. At eighteen months he was attending Early Childhood classes and would spend and hour or so working on strengthening and playing. Shortly before the age of two, Peter began to walk. Looking back, I never thought he would not sit, or walk, or even talk. Talking, however, is for another day. I guess I just thought Peter would be who he was, but always thought he would continue to grow. I really do not think I thought much beyond the present. I did not play the what if game, but more the it is what is game. Although, in the early stages, I still felt there would be a cure or Peter would just snap out of it. I guess you could define that as hope. But that hope, and the idea of taking one day at a time worked for me. And with each baby step, really little baby steps, Peter made progress. He grew stronger, could hold up that head, and eventually his whole body. Now how cool was that!

Eating

Eating...now this is something that logically follows mantras and guilt. But if you have a child, and that child or infant at the time will not eat, it is a bit unnerving. Peter could sleep for hours on end, so needed to be woken to be fed. Once awake, he would have preferred to sleep, so all those little tricks, letting his feet get cold, tickling his feet, just did not work. When breast feeding did not work we tried all the formulas known to mankind and he still did not want to eat. You would think feeding should be natural, after all who doesn't want to eat. My older two children, couldn't eat enough and now here was there brother who had absolutely no interest in food. So, we plodded along, and Peter's weight fell off the growth charts. That's how he ended up at the children's hospital. Everyone scratched their head, but he just ate the minimal amount. To this day, Peter only eats until he gets full (sort wish I had that gift) and stands only 5'3" and weighs 112 pounds. The good is he still wears children's clothing and I can still order the Land's Ends pants with elastic as he is not into buttoning which he recently demonstrated at his cousin's wedding when he became hot during the ceremony and decided to do some Herculean thing by ripping off his dress shirt only to reveal the t-shirt he had put on which said "This is not my costume".. Who dressed him for the wedding anyway?
So, back to eating...by the time Peter could chew, we had discovered McDonald Fries. Many days were spent around the city while Peter ate a bag of Fries. He ate, I drove. He gained some weight...everyone was happy. Life was good!
Until recently, Peter's diet consisted of about five items: pancakes, macaroni and cheese, grilled cheese, French Fries, Peanut butter sandwiches. It was the "no thought' diet when it came to feeding Peter. About one month while eating with his sister and me, I placed his usual fare in front of him and we ate our chili. Peter told us that he ate chili. We looked at him and said "No way" , he proved it, we called the neighbors and anyone else interested as this was a very big event at our house. That is one of Peter's gifts, the little things that make you get all excited and want to celebrate. Who would have thought...chili!

Guilt

When one is blessed with a child with specials needs, the blessings is not so clear in the beginning. Guilt becomes a big issue, as one thinks if she had not had that drink before she knew she was pregnant, or ate that food, or was exposed to whatever...it really does not matter, as guilt raises it ugly head over your mind and tells you it must have been something you did. And when guilt is not there to bug you, then there are those individuals who must have been born to some evil person, who add to the guilt. Such as a local pediatrician who told me his version of why Peter was not growing. That would be I had three children, I probably really did not want a third child, and I play tennis. Obviously, he failed the class in Social Interaction 101 in Med School. There is some justice as this doctor is no longer practicing pediatrics and I have forgiven him for his lack of insight or diarrhea of the month. The guilt was also fostered by the team of doctors at a local Children's Hospital that could not find their way into Peter's room after he was tagged as "Failure to Thrive". Did you know that "Failure to Thrive" in the 80"s meant "bad mother who cannot feed her kid". I could hear the residence standing outside the door, one after one, excuing themselfs from this case. We sat, no one came, I begged, no one came. Like the open window I mentioned earlier, at discharge in walks a nurse who was walking in my shoes, and sent Peter and I in the right direction, down the road to Madison and the Waismann Center. Her name was Jane, and I will never forget her, for if it wasn't for her, the week stay at the hospital would have been for naught and the guilt factor would have become unbearable. So thank you Jane...you were like an angel that day. I guess that is why I have a special place in my heart for nurses. Afterall, nurses, are the ones who really know!
So, life and guilt continued for quite awhile until a test confirmed that Peter had some funky genetic disorder and was placed in a study group of children like him. Guilt, I carried it with me for a long time. The guilt subsided, as the acceptance of this special gift tookover. Peter was not something I created by a mistake, but God created as a gift. Just took me awhile to figure it out.

More on Philosophies-Get Real!

After writing this morning about my mantras that provide a framework for dealing with life and Peter, I than realized I forgot Pity Parties. How I could forget Pity Parties, I will not know! Pity Parties are great and definitely essential in maintaining one's sanity. What is so great about Pity Parties is that you are in charge. You can invite whomever you would like. I always invite no one as I am my own entertainment at my Pity Party, so really I do not need anyone else. I can either schedule my own Pity Party or at times, I have had a spontaneous, I need a Pity Party now moment. I personally like to have my party in a quiet area, a bedroom, the shower. The shower works great as the tears blend in with the water, and cold water helps with the swollen eyes. Night time also works, I like the dark, and then you have the entire night to get rid of the redness. Just to let you know, there is nothing like a good Pity Party. A good "It's not fair" Why me", " I cannot handle this" party. Yes, I know I previously said I used my mantras, but let's face it, there are times that life just stinks, so the best way to deal is to plan an all out Pity Party. Definitely a soul cleanser. I highly recommend it when you feel the need.
As I tell you my Peter stories, I know there were a few of these parties thrown after the fact. Not just a few, depending on the day, there were probably many..all worth the effort of throwing the party and cleansing the soul.

Philosophies

One of my Mantras that I keep in my back pocket is "God will only give you what you can handle" and trust me, I have had many discussions with God about my limit. Obviously, I am still here, better off with the various...... what is the word..."Loads I was given...Gifts I was given", and He does seem to know, although I know a day will come and I will again have that discussion..."Isn't enough, enough"? Actually, I can now look back and say all the difficult times have made me a better and stronger person, all part of life's puzzle which gives meaning.
During the early years of my life with Peter, I often wondered "why me"? Yes, I looked around at all my friends and not one of them had a child with special needs. Why, they all got healthy kids. Just didn't seem fair. I have also come to the realization that "Life is not fair" and if for one minute I think it is...wrong. There are families that appear to have it amazingly good and those that do not. And that is just "how it is." So another one of my life's motto's...Each person in life is given "things" or a plan or whatever, and in life, one is to use what is given and do the best the person can do. So, using an bad cliche...I am to deal with my plate..full, not so full, and in the end, it is all about how I ate my plate. Does that make sense? To me, God says "Here is your plate or life plan, now do the best you can".
It seems I am on a mantra theme today, so here is the other motto I like to keep in my back pocket. When God closes a door, he opens a window. Again, discussion with God sounded like this. "Please do not close that door, Where is the window...when will the window be open"? There has always been a window, maybe not my window or the window I would have picked, but there is a window. Sometimes that window is just staring you in the face, and other times that window is hidden and takes a bit more searching. But it is there, maybe not open as soon as I want it open, but it opens, sometimes quietly, and sometimes the wind just blows in and smacks you in the face. I know, that no matter how dark a situation can seem, there is a window somewhere in that tunnel of darkness, that will open. I think the other word for that window is hope, and without hope, life could be quite scary.
So these are my mantras, my framework, that has given me direction in life that has helped me walk the walk with my life with Peter Labanowsky. Hope, trust, and most of all, a very good sense of humor and the realization that most everything can be fixed. If I may borrow my friend's Betsy's saying "Was anyone hurt? Did anyone die? Than it is no big deal and life goes on!" And believe, me I used that one quite abit and than called the repairman.
So onto today and what life will bring!

The Beginning

Almost did not find my way back. That is scary...make a blog...can't find the blog. But I am here, whew!
So, beginning or present....beginning. Just seems to make sense to start from the beginning and how my life with Peter Labanowsky began. So you see, Peter is the third child, the uncomplicated pregnancy, no eclampsia, no placenta previa, perfect pregnancy. And at 6 AM in the morning, Peter literally slid into the world, quietly. And there he was, declared a perfectly normal little boy. Which of course he is, because who defines normal anyway. Only to discover that his eyes were not normal, they look like cat's eyes. Only to be told by a friend who is an pediatric ophthalmologist that he would most likely be blind as she could not find an optic nerve. So, to this day, I remember driving home in that Cranberry Town and Country, tears streaming down my face, vowing that Peter would lead a normal life just like Mike Riordan. Mike is the son of Dan and Sue Riordan who had cancer as a child, but lived until he was 22 years old with complications from the Radiation Therapy. He lived a very full life, even going to college until the time of his death. You could say, Mike got his bang for his buck out of life. So, Mike was going to be our role model, no matter what the obstacle....normal, and that was that.
Months later, we discovered that Peter actually could see...as if he was looking through a periscope, but he can see and has learned to compensate well...you would never know. And the ophthalmologists still can't find that optic nerve!! Makes you wonder!
However, before that time, Peter ran into other problems. He just couldn't grow and he was a bit floppy, and he did not progress. So the beginning of doctor's visits to clinic, and hospitals, and children's hopsitals and special clinics began. And Peter continued not to grow, the medical professional scratched their heads, and said something about a defective gene in the Respiratory chain of his muscle tissue. Nothing medicine could fix.
After about fours years of searching and trying to find an answer, I decided it was time. I thought...This is Peter, there are no drugs that will cure, there will be help for progress, and I was finished. No more trips to Madison or Milwaukee, just the usual kid's stuff. So, after fours years, I probably came to the acceptance and realization that Peter was special....only I did not know at that time how really special he was!

My Life with Peter Labanowsky

Finally, I am here. Years have past and friends have said....you need to write a book. And I smile and agree, yes, I need to write a book. But time has been an issue, and really, getting started has been the bigger issue. Three cassette players later, and several computers which kept my previously started documents regarding my life with Peter, "the book" remains just a thought, a smile, of what should be. But now, I admit, after just watching the movie "Julia and Julie", I thought, I could handle that. I could do a blog, I can write something everyday. I think this can work. I will try and stay committed, I will try and write once a day, and I will tell the story. The story that began almost 22 years ago. A story that has changed my life. A story that brought tears..that would be many tears , but more than tears, joy, and the realization about what is really important in life. So, today, I begin, with a basic blog site (if that is what it is called) and a opportunity to tell about the life I have experienced with my son, Peter. So, tonight, I will decided, do I start from the beginning or do I start from the present and the half of gallon of Crisco which lies in my sink. I will think, maybe both ends work, some present, some not so present. The meaning is the same as there has never been a dull moment in my life with Peter Labanowsky