Prior to E falling asleep last night as I was a tucking him in, he looked up at me, blew me a kiss and said "Say 'Bu-Bye'". This was the third time yesterday E used a new word. SAY. He hears me tell him all of the time, "Say 'Hi'", "Say 'Bye'", "What do you say?", "Say 'Thank You.'" Obviously, his intent last night was to tell me, "I am done with you, please leave me alone. I might go to sleep, I might not, but whatever I will do, I don't want you around me anymore."
A little explanation of E bedtime routine might be helpful. After I tuck E in for the night, I usually stay in the room and read. Occasionally, I'll have to jump into action and keep him in bed or in his room. Most of the time I tell him to lay down, put your head on your pillow, and the like, which he complies in doing.
E has often said Bu-Bye to me during his bedtime routine. My usual response is Yes, but go to sleep first. But he has never told me to say, "Bu-Bye". My response to his directive was, "I love you too much to let you fall asleep without me. Nice try; I admire your effort. Good work using your new word." A look of distain and irritation came over his face, which he covered with his favorite blankie. I took my position sitting in the corner of his room with a vantage point that allowed me to see and react to his rascal-like tendencies.
After about ten minutes, I heard the snoring signal of a sleeping son. I adjusted the covers over him and smiled, knowing that he is indeed my son. Despite the challenges imposed upon him, he still projects the impish smirk I still occasionally flash when my own rascal-like tendencies emerge.
I can't fault him. He is genetically predisposed to challenge the authority of others. Both Sandi and I (probably me more than her) seem to have a more than slight proclivity to challenging the status quo. We push envelopes, barriers both professionally and parentally. It is likely the reason where we are and definitely why Eion is where he is.
Say - is the first new word E has spoken in probably three years. Oh, he types new words every day, the fact that he was able to use his mouth and vocal cords to say a new word is, well, .........amazing. I am not sure what to attribute the acquisition and production of his new word. Unlike other words, which are approximations, this was a clear, unambiguous pronunciation. No guess was needed to determine the word he wanted to use. It was just there.
In thinking back on last night, it still makes me smile. His correct word usage and the very manner he used it reminds me of my youth, particularly of an event that still haunts my mom to this day. I was thirteen years old and we were at the dentist for my semi-annual check up and cleaning. The dental hygienist and mom were lecturing me about brushing better and flossing. The hygienist warned that if I didn't I might have to have dentures and no one likes dentures. The same impish smirk probably had appeared on my face. My response to her was well I don't know if I wouldn't like dentures, I've never had them before. To which a now paled faced hygienist rises from her seat and scampers out of the room. I suddenly feel the hairs on my neck rise as I sense my mom getting ready to explode. I turn with the smirk to my mom's red face, bulging eyes, teeth gritted and veins in her neck fully distended.
Will you shut your mouth, she snapped.
Oh boy! I thought. The irony of being told to keep your mouth shut at the dentist's office. I think for a second about informing my mom of the irony, but decide that another word at this moment probably will not be the best of ideas.
The door opens, sure enough, the hygienist has now brought the dentist into the room, who proceeds to give me the same speech about brushing, flossing and dentures.
Common sense would have probably dictated that I not repeat the dentally offending statement. But I am thirteen years old, I have no common sense. Out comes the same declaration of unfamiliarity with dentures or my possible affinity for them.
My mom saves me from myself, grabs me by the back of the shirt and proceeds to bull rush me out of the dentist's office with all of the love and concern of a bulldozer. The 30 minute drive home was one of the longest thirty minutes in my life and wherein I honestly believe that I was going to be sold to gypsies.
I am not sure to this day what is more dismaying to my mom, whether it was the fact that I repeated the statement to the dentist or the fact that my father agreed with declarations regarding dentures.
So, when I say E comes by it honestly, he really does.
I am sure I will be told to Say [blank] in the future by E; I'll smile and politely decline his request and implied message.
Thanks E for being the apple that didn't fall too far from the tree.
Thanks for reading; more to come.
Thursday, January 26, 2012
Monday, January 23, 2012
A trip to the (movie) theater
Yesterday, we decided to go see Alvin and the Chipmunks - Chipwrecked. E had enjoyed the two other Chipmunk movies and we believed this would continue with the Chipmunk's third installment.
A typical movie experience with E is both entertaining and exhausting.
We start our movie watching experience with a trip to the concession stand. No movie experience would be complete without popcorn. Of course, this being a story about E; the enjoyment of popcorn itself is unique. If you ever wanted to enjoy popcorn that was been pre-moisted for easier chewing, one must share popcorn with him. E loves to lick the salt and butter off the popcorn and return the "used" kernel to the community bucket. Obviously, as a family, we continue to enjoy "fresh" and "used" popcorn without any squeamishness. A secondary aspect of sharing popcorn with E is the popcorn being strewn about our general seating area. After a movie, our seats are similar to the feeding of pigeons. I am sure the theater workers are not fans of E's popcorn eating style.
We usually don't see movies on the day or in the month they open. We wait for a quieter time of day far from the release date. Yesterday, there were only three other families enjoying the movie. Less is more. I could be a bit more relaxed (but I rarely am) when there are fewer people in the theater.
Once the trailers start, E settles in and begins watching. There is nothing like a good set of movie trailers. E's iPod is loading with many movie trailers. He is a big, big fan. In fact, one of the two quietest of moments with E during the movie watching experience is the trailers before the movie starts. He will usually identify some aspect of a trailer that he likes. Whether it is the fact that it is a Pixar or Disney production or involves characters from other films he's seen, trailers are mini-movies to be enjoyed.
After the movie begins, it becomes an active movie watching experience. Between holding the popcorn bucket, make sure he isn't bouncing out of his seat like Tigger, handing him his bottle of water, going to the bathroom, giving him his iPod or telling him to whisper, our movie experience is full contact. Yesterday was no exception. In addition to the foregoing activities, E discovered that when he leaned back slightly in his seat it squeaked, which he took great delight in replicating over and over again.
E is what I call a multiprocessor. He can watch a DVD, play a video game, listen to music and multitude of other things at the same time. The cacophony of noise is tolerable by his family, but we try to not subject the public to it. Thankfully, no one has ever complained about E's multiprocessing at a movie theater. About half way through the movie, E tapped his head above his ear, which is E-sign for iPod. I handed him his iPod, while juggling the bucket of popcorn, water bottle, his hands and arms and stopping him for launching himself skyward.
The last couple of movies we have gone to a theater to see haven't been good choices. E has ended up E-signing that he is done as well as shrieking at the top of his lungs. Taking our cue, we have left the movies early. I still don't know how the Smurfs got back to their village or how Puss in Boots' adventure ends. Yesterday, we didn't leave the movie early. We stayed through the end. However, E took advantage of the dark, quiet, comfortable theater and took a nap. Not the cheapest or most expensive nap he has ever taken, but somewhat disappointing given that when he naps he doesn't usually sleep well that night. Normally, I would take advantage and take a little nap myself, but there is no way to sleep with the squeak of chipmunk voices through digital dolby sound.
Sandi and I finished the movie while E napped across three seats, the ends occupied by Sandi and I. She got to deal with his snoring, I got his slightly wet boots. I woke E as the credit begin to roll. This is the second quietest moment of the E movie watching experience. Yes, we are that family that sits through to the very last frame of the movie credits. Here is a pics of E enjoying the credits. I am not sure where his fascination with credits evolved from. My guess is the music combined with the order of the words is the draw. E has even invented a game related to movie credit watching. We compete to find all of the individuals who contributed to the movie production named either Thomas (signified by E pointing up and saying Ta-Ta-Ta) or Arthur (signified by E again pointing up and saying Ar-Ar). Sadly and incredibly, no Thomas or Arthur were found yesterday.
No movie experience would be complete without playing a video game. This theater was no exception to the modern movie experience contained a small arcade. After one driving video game, E was satisfied with his Sunday afternoon. We left the theater with a content, happy and rested E.
Thanks E for changing movie watching from a passive activity to a full contact sport.
Thanks for reading; more to come
A typical movie experience with E is both entertaining and exhausting.
We start our movie watching experience with a trip to the concession stand. No movie experience would be complete without popcorn. Of course, this being a story about E; the enjoyment of popcorn itself is unique. If you ever wanted to enjoy popcorn that was been pre-moisted for easier chewing, one must share popcorn with him. E loves to lick the salt and butter off the popcorn and return the "used" kernel to the community bucket. Obviously, as a family, we continue to enjoy "fresh" and "used" popcorn without any squeamishness. A secondary aspect of sharing popcorn with E is the popcorn being strewn about our general seating area. After a movie, our seats are similar to the feeding of pigeons. I am sure the theater workers are not fans of E's popcorn eating style.
We usually don't see movies on the day or in the month they open. We wait for a quieter time of day far from the release date. Yesterday, there were only three other families enjoying the movie. Less is more. I could be a bit more relaxed (but I rarely am) when there are fewer people in the theater.
Once the trailers start, E settles in and begins watching. There is nothing like a good set of movie trailers. E's iPod is loading with many movie trailers. He is a big, big fan. In fact, one of the two quietest of moments with E during the movie watching experience is the trailers before the movie starts. He will usually identify some aspect of a trailer that he likes. Whether it is the fact that it is a Pixar or Disney production or involves characters from other films he's seen, trailers are mini-movies to be enjoyed.
After the movie begins, it becomes an active movie watching experience. Between holding the popcorn bucket, make sure he isn't bouncing out of his seat like Tigger, handing him his bottle of water, going to the bathroom, giving him his iPod or telling him to whisper, our movie experience is full contact. Yesterday was no exception. In addition to the foregoing activities, E discovered that when he leaned back slightly in his seat it squeaked, which he took great delight in replicating over and over again.
E is what I call a multiprocessor. He can watch a DVD, play a video game, listen to music and multitude of other things at the same time. The cacophony of noise is tolerable by his family, but we try to not subject the public to it. Thankfully, no one has ever complained about E's multiprocessing at a movie theater. About half way through the movie, E tapped his head above his ear, which is E-sign for iPod. I handed him his iPod, while juggling the bucket of popcorn, water bottle, his hands and arms and stopping him for launching himself skyward.
The last couple of movies we have gone to a theater to see haven't been good choices. E has ended up E-signing that he is done as well as shrieking at the top of his lungs. Taking our cue, we have left the movies early. I still don't know how the Smurfs got back to their village or how Puss in Boots' adventure ends. Yesterday, we didn't leave the movie early. We stayed through the end. However, E took advantage of the dark, quiet, comfortable theater and took a nap. Not the cheapest or most expensive nap he has ever taken, but somewhat disappointing given that when he naps he doesn't usually sleep well that night. Normally, I would take advantage and take a little nap myself, but there is no way to sleep with the squeak of chipmunk voices through digital dolby sound.
Sandi and I finished the movie while E napped across three seats, the ends occupied by Sandi and I. She got to deal with his snoring, I got his slightly wet boots. I woke E as the credit begin to roll. This is the second quietest moment of the E movie watching experience. Yes, we are that family that sits through to the very last frame of the movie credits. Here is a pics of E enjoying the credits. I am not sure where his fascination with credits evolved from. My guess is the music combined with the order of the words is the draw. E has even invented a game related to movie credit watching. We compete to find all of the individuals who contributed to the movie production named either Thomas (signified by E pointing up and saying Ta-Ta-Ta) or Arthur (signified by E again pointing up and saying Ar-Ar). Sadly and incredibly, no Thomas or Arthur were found yesterday.
No movie experience would be complete without playing a video game. This theater was no exception to the modern movie experience contained a small arcade. After one driving video game, E was satisfied with his Sunday afternoon. We left the theater with a content, happy and rested E.
Thanks E for changing movie watching from a passive activity to a full contact sport.
Thanks for reading; more to come
Friday, January 20, 2012
Autism Definition Divide - Time to Rant
Since my last entry was a little heavy, I was going to write about something a little lighter. However, there is something that is brewing within the medical community that I believe I need to write about.
Apparently, the medical community needing to justify the expense and time they committed to educating themselves and obtaining their all-powerful MDs, Ph.Ds, Psych.Ds., the need to review and revise the criteria for autism. With all due respect to these individuals, I think the medical community is missing the point.
I thought the medical community took the Hippocratic Oath wherein a physician pledges to Do No Harm. Given the likely effect of this re-definition, harm will be done. Families and individuals that are currently getting services may lose those services that are vital to them. Losing something that is good or valuable seems harmful to me.
Autism Spectrum Disorders. That is the title given by the medical community. If you title a disorder with the word Spectrum in it, you have already decided that there will be a range of individuals that fit within its definition. Does limiting one end of the Autism Spectrum change the fact that the deficiencies that those higher functioning individuals impacted autism affect their daily living? Do we exclude individuals act typical because they aren't atypical enough. Isn't that merely adding insult to injury? Further, if you change the definition as to who fits within this Spectrum, then parents who advocated and worked with therapists and schools as well as acquired the proper technology to give their child every opportunity and tool to be able to communicate and become part of their community have they done so to their detriment. You end up punishing those who put in the work to maximize their child's potential.
E was originally view as having limited mental capabilities. However, Sandi and I and luckily, a psychologist now with the University of Illinois-Chicago, his first grade teacher and instructional aide looked beyond the curtain and saw a child with a quick mathematical mind and wit. Will the fact that Sandi and I have advocated for E to ensure he continues to get the education he is entitled remove him from a Spectrum diagnosis? I doubt and hope not. Given E's other challenges, I suspect he will remain somewhere on the Spectrum.
I have to be honest. I am not sure what the ultimate effect of the criteria change will have on autism numbers. Will it exclude individuals that are currently diagnosed? Do we change the diagnosis of those "on the bubble" individuals that fell into the previous criteria, but are excluded by the new?
Getting back to my original point, does it matter the extent or amount of impact to an individual's peer relationships, inflexible adherence to a routine, or delays in communication or imaginative play? Whether you lose by one or hundred, you've still lost.
Analogy time: If an individual suffers from a physical disability (say, paralysis in both legs) and with therapy and technology and able to walk, does he get a new diagnosis? Without technology and therapy, he can't walk. But from conventional definitions, a person who can walk may not be paralyzed. If a person is unable to communicate, he is then limited in his ability to develop peer relationships. Given that person a device that allows them to communicate, do we now remove that met criteria and say that he is no longer on the Spectrum?
Moreover, developmental and physical disabilities are not diseases. They are disorders. A flu is a disease. A cold is a disease. Remove/destroy the virus living in your body, you no longer have a cold or a flu. Diseases are definitely more black and white.
Second analogy time: If an alcoholic goes through therapy, rehab, a 12 step program and stays sober, society still calls them an alcoholic. They still are have substance addiction disorder. Society applauds their hard work, but doesn't exclude them with through use of a definition. Additionally, if a person with ADD/ADHD takes an appropriate medication thereby alleviating his systems, the diagnosis of their disorder is not changed because they no longer exhibit the symptoms that were the basis of their diagnosis. Such reasoning is circular and invalid.
[SARCASM ALERT]: Thanks, bulk of the medical community for being so understanding and following the Hippocratic Oath.
Thanks for reading; more to come.
[Sorry for the rant]
Apparently, the medical community needing to justify the expense and time they committed to educating themselves and obtaining their all-powerful MDs, Ph.Ds, Psych.Ds., the need to review and revise the criteria for autism. With all due respect to these individuals, I think the medical community is missing the point.
I thought the medical community took the Hippocratic Oath wherein a physician pledges to Do No Harm. Given the likely effect of this re-definition, harm will be done. Families and individuals that are currently getting services may lose those services that are vital to them. Losing something that is good or valuable seems harmful to me.
Autism Spectrum Disorders. That is the title given by the medical community. If you title a disorder with the word Spectrum in it, you have already decided that there will be a range of individuals that fit within its definition. Does limiting one end of the Autism Spectrum change the fact that the deficiencies that those higher functioning individuals impacted autism affect their daily living? Do we exclude individuals act typical because they aren't atypical enough. Isn't that merely adding insult to injury? Further, if you change the definition as to who fits within this Spectrum, then parents who advocated and worked with therapists and schools as well as acquired the proper technology to give their child every opportunity and tool to be able to communicate and become part of their community have they done so to their detriment. You end up punishing those who put in the work to maximize their child's potential.
E was originally view as having limited mental capabilities. However, Sandi and I and luckily, a psychologist now with the University of Illinois-Chicago, his first grade teacher and instructional aide looked beyond the curtain and saw a child with a quick mathematical mind and wit. Will the fact that Sandi and I have advocated for E to ensure he continues to get the education he is entitled remove him from a Spectrum diagnosis? I doubt and hope not. Given E's other challenges, I suspect he will remain somewhere on the Spectrum.
I have to be honest. I am not sure what the ultimate effect of the criteria change will have on autism numbers. Will it exclude individuals that are currently diagnosed? Do we change the diagnosis of those "on the bubble" individuals that fell into the previous criteria, but are excluded by the new?
Getting back to my original point, does it matter the extent or amount of impact to an individual's peer relationships, inflexible adherence to a routine, or delays in communication or imaginative play? Whether you lose by one or hundred, you've still lost.
Analogy time: If an individual suffers from a physical disability (say, paralysis in both legs) and with therapy and technology and able to walk, does he get a new diagnosis? Without technology and therapy, he can't walk. But from conventional definitions, a person who can walk may not be paralyzed. If a person is unable to communicate, he is then limited in his ability to develop peer relationships. Given that person a device that allows them to communicate, do we now remove that met criteria and say that he is no longer on the Spectrum?
Moreover, developmental and physical disabilities are not diseases. They are disorders. A flu is a disease. A cold is a disease. Remove/destroy the virus living in your body, you no longer have a cold or a flu. Diseases are definitely more black and white.
Second analogy time: If an alcoholic goes through therapy, rehab, a 12 step program and stays sober, society still calls them an alcoholic. They still are have substance addiction disorder. Society applauds their hard work, but doesn't exclude them with through use of a definition. Additionally, if a person with ADD/ADHD takes an appropriate medication thereby alleviating his systems, the diagnosis of their disorder is not changed because they no longer exhibit the symptoms that were the basis of their diagnosis. Such reasoning is circular and invalid.
[SARCASM ALERT]: Thanks, bulk of the medical community for being so understanding and following the Hippocratic Oath.
Thanks for reading; more to come.
[Sorry for the rant]
Wednesday, January 18, 2012
Marathon of life
I personally have never run a 26.2 miles nor do I have any intention of doing so. I have been told that in running a marathon you discover the person you are. I know the person I am without such a run as every day for E, Sandi and I is a marathon. While I do admire people who attempt to run and finish, their efforts are limited at most a six hour run on a particular Sunday and the daily training runs leading up to the event. Our family exerts that effort every day without training, without the benefit of being able to quite and without the benefit of a medal being presented.
Sandi has run marathons. I have never asked her thoughts about this next assertion, but I am pretty sure that she would agree: our every day life as more intense, more tiring and requires more effort that any of the marathons she has participated.
I don't begrudge runners or others' athletic endeavors. They should feel proud of their accomplishments, but understand that such achievements are limited in the reach and effect in the lives' of others. A marathon runner may inspire others to run, but do they inspire others to live? Does running give others motivation to become independent? Does running give others skills to become employed? Does it give others the ability to learn and communicate? Obviously, the answers to these questions are NO.
Similarly, I don't begrudge parents with neuro-typical children. They have their struggles and challenges albeit from a different scale and degree. They have similar worries, just a difference in the matter of degree.
Parenting is a tough job, regardless of the child. It is a job that you are not compensated for financially. The benefit is the result and seeing your child(ren) grow to an independent adult is the compensation. This compensation is all the more sweeter when you child has special needs. We celebrate the mundane and ordinary. We don't celebrate pee-wee football victories. We celebrate when E has a good day at school. We don't celebrate being my child being named to an all-star team. We celebrate when E has gotten dressed by himself before school. We celebrate things that others may take for granted where no task is too small, no achievement too minuscule. For us, it is all a matter of perspective. We celebrate the path our journey takes, but we still keep an eye on the destination.
If I did do a marathon, first, hell has frozen over, and second, I would live in the moments between the start gun and the finish line (mostly because I would be afforded that opportunity, because I probably would be walking most of it). It is the moments between start and finish that I would maybe for a split second understand challenges that special needs children face.
The playing field of life is not equal or level. That is an incontrovertible fact. However, it is the determination of the participants to live life and equal the field of play through sweat and tears that makes all of the difference in their lives.
Thanks to all who enjoy the journey over the destination.
Thanks for reading; more to come.
Tuesday, January 17, 2012
Life between Disney visits/Winter Blues
E is in a funk. Last week, E took a bit of a woe is me attitude. Sandi and I, and school especially, Miss Sharon, his communication therapist, asked him why was he so blue. Apparently, there is little in life to be excited about until his next adventure (presumably to a Disney Park).
About a week after returning home from our West Coast adventure, E was already asking to jet away via his favorite airline, United. I counted the number of days we were away, 11 days and compared those with the number of days we had been home, 6 days. I explained that we were probably staying home for a while and his next adventure would have to wait. Suffice to say, he was unhappy with me, my analysis and my statement. E signaled his disapproval with a fist slam and grunt.
Returning to school after winter break is hard for all students, especially those in the Midwest (and more so when impacted by autism). It is cold, sometimes snowy. Going outside requires being bundled up with layers of thinsulate, scarves, hats etc.... Night falls around 5:00 and mornings don't break until after 6:00. Winter blues weigh heavily on all of us, but probably none more than students.
I remember as a kid E's age that life until the next break (winter, spring, summer) was slow, excruciating day by day crawl. I waited with bated breath for the next long weekend and maybe for the possibility of a snow day for a break from the monotony of school. The period from January to spring break was an exhaustive period of time, just waiting for the weather to break when winter coats, hats, mittens/gloves could be shed and we were a little closer to spring break.
As a kid we never went any where during breaks. I think I can count only a handful of vacations my brother and parents took. Most trips were day trips when my dad could get coverage for the hospital. I think my perception of vacations was framed by my classmates' excite more than my own. Breaks from school were spent at home, causing damage or mayhem to our home and the neighborhood with our fair share of water balloon fights, baseball and basketball games and food fights (in the kitchen) [Note: Food fights are not particularly enjoyed by my parents, especially, when there is a pizza stuck the kitchen ceiling].
For E, we have often traveled for each break. At 12, I had only been to five states and never outside the country. E attained that level of travel by age 4. I can see why his expectation is that he should be traveling as he has done so most of his life. E has been out of the country twice and visited 19 states. The only reason I can say that I match his travel profile is because I took him to all of these places. I know that E would gladly trade all of this travel in to go to Disney or as he says.....Dis-N.
Our recent adventure to Disneyland was born from our spending Thanksgiving with my parents. E walked up to my mom, with a Disney movie in his hand, leaned his head onto hers and said Dis-N. My parents love these exchanges for two reasons: 1) There is no thing they wouldn't do for E. 2) The neuro-typicalliness of exchange know that E is a schemer like I was. [I am reformed now].
My mom trying to decipher the context looked at me. I said "Disney movie", which she then said to E. E shook his head NO. I then said "Disneyland", which my mom repeated to E. A smile came across E's face. My mom continued and asked E, "Do you want to go to Disneyland?" E smiled even bigger and responded with "Puh-eessss". There are very few motivating points to get E to use his limited word approximations, but asking E if he wants to go to Disneyland will ALWAYS provoke a PLEASE. My mom hugged E, turned her head in my direction and commanded that E was to go to Disneyland.
No problem; I'll just fold my arms, blink my eyes and magically transport so to Disneyland. What my mom should have commanded was that E was to go to Disneyland on his next break. E takes some things literally. Saying E could go to Disneyland without the next break qualifier was the equivalent to saying to E, go get your shoes on, we are going to Disneyland, right now.
After clarifying when he would be actually going, the eventual tantrum regarding the delay and recovery, E had something we realize he needed, but often forget to put in place: a reason or motivation to continue to work.
E has to physically work hard to accomplish what a typical 12 year old accomplishes. He has to type just about everything he wants to communicate. E has a shorthand vocabulary that allows him some shortcuts in communication, but more often than not, he has to type. He is not a typical kid even under the broad sense of the term, but that doesn't mean he won't respond to typical motivators. Have we used a trip to Disneyland/DisneyWorld as a motivator? Absolutely. Trips to Toys R Us, GameStop or Best Buy? Yup. Positive reinforcement is a great tool for conditioning behavior and we use it A LOT.
E has been to Disneyland/DisneyWorld or both every year he has lived. Yes, he is a bit spoiled, but it is hard to deny that for E, life between Disney visits is all about work and overcoming his challenges. He lives for that long weekend or week, where he can enjoy being a kid, seeing the characters, enjoying the attractions and room service. I think that E will always love his trips to Dis-N and given the ear to ear smile to brings to his face, Sandi and I will too.
Thanks E for working so hard 48+ weeks a year and earning those trips to Disney; don't worry, one is right around the corner!
Thanks for reading; more to come.
Sunday, January 15, 2012
Why Can't Kids........
E will often start questions with those three words, usually as part of his argument to justify some inappropriate behavior.
As part of the curriculum of E's school, the students go swimming two times a week. The first day at swimming last week, E decided that he would shed his trunks. His attempt was cut short and had to sit out the rest of the swim period.
After such situations, Sandi or I will talk about why he thought that was appropriate. As part of this conversation, E asked Why can't kids swim naked? Sandi responded that kids can't swim without trunks and that no one really needs to see that.
This got me thinking as to other questions E has asked.
Why can't kids live at Disney?
Why can't kids play the Star Wars games at the casino?
Why can't kids skip breakfast and go right to the Magic Kingdom?
Why can't kids stay up all night on a school night?
Why can't kids........ I like the fact that E challenges the status quo. He may question authority and advocates, but he does in a unique way. His questions asks Why Can't Kids, not Why Can't I. He advocates for everyone, not just himself. I don't know the origin of this style of advocacy. He has heard me make arguments advocating for this position or that position, but I don't think I have ever advocated quite like he does nor as often.
The prevailing thought is that individuals impacted by autism don't understand the world around them and don't often consider the other people around him. Like E's drive to challenge authority, he challenges that notion constantly. It is that innate need to question and challenge that makes him unique and so difficult at the same time. Often he will ask a question that Sandi and I have to take a minute or two to come up with an answer. I hate saying "because" or "because I said so". They were irritating to me as a child and I promised myself I would never use them with my kids. Sandi and I don't soften or dumb things down when discussing matters or issues with E. We speak with him as any parent would speak to their twelve year old. I don't think it's an understatement to say he knows more than we think he knows.
In a world of stereotypes, I like the fact that E shatters the typical notions of autism. Yes, he is good at math, but is that because of the typical stereotype of being impacted autism or because of the typical stereotype of being asian. He loves motion, roller coasters and speed. Is that because of autism or because he is almost 13 years old. He is unable to talk, but speaks volumes. E is an atypical autistic. He challenges as much as he is challenged. He acknowledges his difference, but still lives the life of a typical 12 year old. We rarely deny him the opportunity to live, for fear I will hear a question beginning with those three words............
Why Can't Kids.........
When E asks Why kid's can't........, I smile knowing that kids, especially E, can.
Thanks E for showing everyone that there are differences to everyone (disabled or not).
Thanks for reading; more to come.
As part of the curriculum of E's school, the students go swimming two times a week. The first day at swimming last week, E decided that he would shed his trunks. His attempt was cut short and had to sit out the rest of the swim period.
After such situations, Sandi or I will talk about why he thought that was appropriate. As part of this conversation, E asked Why can't kids swim naked? Sandi responded that kids can't swim without trunks and that no one really needs to see that.
This got me thinking as to other questions E has asked.
Why can't kids live at Disney?
Why can't kids play the Star Wars games at the casino?
Why can't kids skip breakfast and go right to the Magic Kingdom?
Why can't kids stay up all night on a school night?
Why can't kids........ I like the fact that E challenges the status quo. He may question authority and advocates, but he does in a unique way. His questions asks Why Can't Kids, not Why Can't I. He advocates for everyone, not just himself. I don't know the origin of this style of advocacy. He has heard me make arguments advocating for this position or that position, but I don't think I have ever advocated quite like he does nor as often.
The prevailing thought is that individuals impacted by autism don't understand the world around them and don't often consider the other people around him. Like E's drive to challenge authority, he challenges that notion constantly. It is that innate need to question and challenge that makes him unique and so difficult at the same time. Often he will ask a question that Sandi and I have to take a minute or two to come up with an answer. I hate saying "because" or "because I said so". They were irritating to me as a child and I promised myself I would never use them with my kids. Sandi and I don't soften or dumb things down when discussing matters or issues with E. We speak with him as any parent would speak to their twelve year old. I don't think it's an understatement to say he knows more than we think he knows.
In a world of stereotypes, I like the fact that E shatters the typical notions of autism. Yes, he is good at math, but is that because of the typical stereotype of being impacted autism or because of the typical stereotype of being asian. He loves motion, roller coasters and speed. Is that because of autism or because he is almost 13 years old. He is unable to talk, but speaks volumes. E is an atypical autistic. He challenges as much as he is challenged. He acknowledges his difference, but still lives the life of a typical 12 year old. We rarely deny him the opportunity to live, for fear I will hear a question beginning with those three words............
Why Can't Kids.........
When E asks Why kid's can't........, I smile knowing that kids, especially E, can.
Thanks E for showing everyone that there are differences to everyone (disabled or not).
Thanks for reading; more to come.
Wednesday, January 11, 2012
Inspire the people in your life
Words and action inspire. I am not sure where the internal inspiration to begin this blog sprang from (the external inspiration came from Sandi and Kinsey (a good friend that works for the Foundation that operates the school E attends). However, I know where the inspiration to continue to write does. Thank you to you who have encouraged me to continue to write. I am flattered by your kind words. I received a Facebook message from a high school classmate, who recently contacted me after reading this blog. She related to me that she had been enjoying it and had shared it with her 10 year old daughter. Kalia, inspired by a book, Out of My Mind by Sharon M. Draper, volunteers in a special education classroom at the school she attends. According to Kalia, Out of My Mind is about an 11 year old girl named Melody, who has cerebral palsy. Melody does walk or talk, but is very smart and no one recognizes it. I have never read the book, but I will. I see some parallels between Out of My Mind and E. E doesn't speak and is very smart. However, where Melody is not recognized as being smart, we were lucky that his first grade teacher saw a unique, mathematically inclined mind and began cultivating it.
But back to Kalia's story....
At 10 years old, I am impressed by her volunteerism. I am an inquisitive person and always interested in what motivates a person. I contacted her mom/my classmate and asked if I could ask Kalia some questions. In interviewing Kalia, I found a bright, insightful person who has an understanding of people far beyond her years. She has a view of the world that others would be wise to adopt. When she sees someone with a disability she does not assume anything about them, because she understands that is usually more there than meets the eye. Yet another view of the world that others should adopt.
I asked Kalia what she likes about volunteering and her favorite activity she does when she is volunteering. Kalia loves seeing the
smiles on the children’s faces when she enters the classroom. I have seen similar smiles from E as well as his classmates when the gym teacher enters his school. Kalia's favorite activities are helping with math and doing yoga. Kalia understands her special needs classmates get frustrated quicker than others and tries to help them through those times.
Kalia has inspired two of her close friends to volunteer as well. These two friends have also developed a love for volunteering. Kalia loves making these kids smile. Making any child smile is the best thing anyone can do. She and her friend make Holiday Cards for the kids and took great joy in the smiles on their faces.
After reading her answers, I thought back, 31 years, to when I was 10 years old and what altruistic acts I may have done. I couldn't come up with one. Not one. And I went to Catholic elementary school. Sure, I was an altar boy, but that really doesn't count as altruistic since it was a way of getting out of class every once in a while. I played basketball, video games and on a computer. I watched TV, stayed up late and was the bane of my brother's existence. I was a pain in my parents' butts (and probably still am). Of all these things, I am sure.
Thankfully, there are kids like Kalia who are more thoughtful than I was at their age. They provide more inspiration to make the world a better place. A little better today than yesterday.
Her last statement to me is as inspiring as any statement I have ever read: Keep writing your blog. You have a gift for writing, I would use it!
Thanks Kalia for your efforts and for being an inspiration to those you help, to their parents, to your parents and ....... to me.
Thanks for reading, more to come.
Sunday, January 8, 2012
Birthday Party
It is rare that I will ever do this, but I have to tell you about our evening.
Sandi, E and I were invited evening for a birthday party for Ariela and Shoshanna. In episodes to come, this family is comprised of father Saul, mother Julie and 5 girls, Rebecca, Alyssa, Shoshanna, Ariela and Shira and will figure quite prominently.
I guess a little background may be necessary.
Alyssa was a camp counselor to E at a summer day camp about 5 years ago. E chose her to be his camp counselor after his original counselor was let go only after a couple of days into camp. The camp manager told E to pick his new counselor out of a group of teens that were standing nearby. E walked up to Alyssa, having never met her before, grabbed her hand and led her to the camp manager, who asked if he was sure. To which he replied, ya, ya. After the camp ended, she offered to watch E for us so we could enjoy a rare evening out. We took advantage of this. In following years, Alyssa and Ariela were E's camp counselor at various summer day camps.
During Alyssa's senior year, we became quite close with her family, and have more or less been adopted into their family as we do not have any immediate family with a 20 minute drive of our home. Four of the five girls have either traveled with us on vacation or have watched E for us. E has spent the night at their house as well. He is their little brother and even with their busy schedules still make time for him.
Anyway, this Wednesday, Ariela and Shoshanna turn 21. In advance of this momentous birthday, Julie decided to throw a party for family and of course we were invited.
There are always a lot of people that attend a party at Julie's house. Grandparents, aunts and uncles, cousins and friends. There were more than 20 people at tonight's party. That many people on the same floor of a home does tend to make a lot of noise. Believe me, there was some noise.
In parties of the past, E would tend to get over-stimulated by the noise level and begin to shutdown socially and emotionally. We typically excuse ourselves so E doesn't spoil anyone else's enjoyment and we end up staying an hour at the most. Saul, Julie and the girls understand and will often walk E to the car so he doesn't feel bad about leaving.
Tonight, E did a good job keeping himself in a good emotional state and did not shutdown socially or emotional. In fact, he was interactive, interested in what the girls, cousins and their friends were doing, giggling and laughing. At one point, he was entertaining a room with his uncontrollable laughter over a YouTube video. There's just something about that certain video that makes him crack up.
Any social encounter is met with much trepidation by Sandi and I since we are never one-hundred percent sure how it will go. However, we refuse to limit what we introduce E to just because of what could occur. Had we not decided to go to the broadway production of the Lion King, we would have never known of his love of plays and shows. Sandi and I do not shy away from giving E an opportunity to live life. That is why regardless of prior experiences with birthday parties of which there have been many, we always go and see what happens. We always know at Julie's house if we have to go, there's no stigma attached to our having to leave early.
E did so well that as we were leaving he said good bye to Sandi, grabbed Ariela's hand and started to walk out the door. Sandi stood there dumbfounded that she could be cast aside so quickly and trying to figure out if a trade had been made.
There are many reasons for tonight's success, which I will write about in coming posts. I just really wanted everyone to know how successful E was tonight.
Thank you Saul, Julie, Rebecca, Alyssa, Shoshanna, Ariela and Shira for opening your home and hearts to E.
Thanks for reading; more to come.
Sandi, E and I were invited evening for a birthday party for Ariela and Shoshanna. In episodes to come, this family is comprised of father Saul, mother Julie and 5 girls, Rebecca, Alyssa, Shoshanna, Ariela and Shira and will figure quite prominently.
I guess a little background may be necessary.
Alyssa was a camp counselor to E at a summer day camp about 5 years ago. E chose her to be his camp counselor after his original counselor was let go only after a couple of days into camp. The camp manager told E to pick his new counselor out of a group of teens that were standing nearby. E walked up to Alyssa, having never met her before, grabbed her hand and led her to the camp manager, who asked if he was sure. To which he replied, ya, ya. After the camp ended, she offered to watch E for us so we could enjoy a rare evening out. We took advantage of this. In following years, Alyssa and Ariela were E's camp counselor at various summer day camps.
During Alyssa's senior year, we became quite close with her family, and have more or less been adopted into their family as we do not have any immediate family with a 20 minute drive of our home. Four of the five girls have either traveled with us on vacation or have watched E for us. E has spent the night at their house as well. He is their little brother and even with their busy schedules still make time for him.
Anyway, this Wednesday, Ariela and Shoshanna turn 21. In advance of this momentous birthday, Julie decided to throw a party for family and of course we were invited.
There are always a lot of people that attend a party at Julie's house. Grandparents, aunts and uncles, cousins and friends. There were more than 20 people at tonight's party. That many people on the same floor of a home does tend to make a lot of noise. Believe me, there was some noise.
In parties of the past, E would tend to get over-stimulated by the noise level and begin to shutdown socially and emotionally. We typically excuse ourselves so E doesn't spoil anyone else's enjoyment and we end up staying an hour at the most. Saul, Julie and the girls understand and will often walk E to the car so he doesn't feel bad about leaving.
Tonight, E did a good job keeping himself in a good emotional state and did not shutdown socially or emotional. In fact, he was interactive, interested in what the girls, cousins and their friends were doing, giggling and laughing. At one point, he was entertaining a room with his uncontrollable laughter over a YouTube video. There's just something about that certain video that makes him crack up.
Any social encounter is met with much trepidation by Sandi and I since we are never one-hundred percent sure how it will go. However, we refuse to limit what we introduce E to just because of what could occur. Had we not decided to go to the broadway production of the Lion King, we would have never known of his love of plays and shows. Sandi and I do not shy away from giving E an opportunity to live life. That is why regardless of prior experiences with birthday parties of which there have been many, we always go and see what happens. We always know at Julie's house if we have to go, there's no stigma attached to our having to leave early.
E did so well that as we were leaving he said good bye to Sandi, grabbed Ariela's hand and started to walk out the door. Sandi stood there dumbfounded that she could be cast aside so quickly and trying to figure out if a trade had been made.
There are many reasons for tonight's success, which I will write about in coming posts. I just really wanted everyone to know how successful E was tonight.
Thank you Saul, Julie, Rebecca, Alyssa, Shoshanna, Ariela and Shira for opening your home and hearts to E.
Thanks for reading; more to come.
When it's time to go to bed
Tomorrow it's back to school for E. After a LLLLLLOOONNNNGGGGGG break, I am certain E is looking forward to a change of scenery, mainly not having to see or hear me all day long. I completely agree and could use a little away time. As the saying goes, absence makes the heart grow fonder.
Since break started and without the structured regimen provided by school, E's sleeping has been a bit erratic. He tries to go to bed early, then is up in the middle of the night and sleeps to 8 or 9 in the morning. He is 12, almost a teenager. I don't expect him to have my sleeping habits which is usually 4 to 5 hours a night unless I am sick then it is more. E has his mother's sleeping habits, he needs a good 10 hours and he is good to go. Those 10 however, do not need to be consecutive, unlike his mother's sleep needs.
Needless to say, this break has been a little sleep depriving, even for me.
I am currently fighting off a cold. Not a bad one, but enough that I tried to go to bed at 7:30 last night. The last time I tried to go to bed that early I had pneumonia. I went to bed after taking a couple of Benadryls. It is 8:30 and I began to hear the following: E, what are you doing?, E, where are you going? E, go to your room and other questions and commands of a similar nature. I finally arose to an exasperated mom/wife asking me to see what I could do.
There is a definite hierarchy in the discipline/control function within our home. I have the luxury having my authority respected by E, while my wife unfortunately struggles to exert her parental control. To me, it's all a matter of perspective for E, E knows I will carry out every one of my ultimatums, while my wife is good for maybe, one of ten. She is getting better, previous, it was one of hundred.
This is a fundamental difference in our perspective of E. I believe he is my pre-teen boy who just happens to be non-verbal, impacted by autism and other health impairments. My wife treats him as a son, whose is a medically fragile, has autism and gives him a huge benefit of the doubt. We love him in our own way. I have been told by my wife that I expect too much; I tell her she doesn't demand enough. But I digress from this tangent and back to the story.
I walked over to E where he was jumping and bouncing off the couch, asked him to go to his room and get into bed. E looked at me, seeing my less than enthusiastic demeanor, got up and ran to his room. He climbed into bed, pulled the covers up to his ears and closed his eyes. What I couldn't see, but suspected was there, was an impish grin waiting for me to leave.
I stood in his room for about 5 minutes and waited. My wife looking up at me said, I got this. OOOOKKKKK, back to bed for Typhoid Me.
I look at the clock reading 8:40 and climbed back into bed and listened for a bit. I didn't hear anything. A good sign, but until I would hear E begin to snore I had a feeling that I shouldn't go back to sleep.
Sure enough, I began to hear my wife shushing E and telling him to lay down. It's 9:30. Suddenly, there are footsteps and my wife yelling, GET BACK HERE!
I go out to the loft, grab E's hand and lead him back to bed. He gets in giggling and smiling. I tell him it's time for bed. Instead of leaving, I lay down next to E and shush him with every squeak, sound or movement he makes. In a matter of 15 minutes, I hear the dulcet snores of my son. I arise from his bed and return to my own. Now it's 9:45, E's asleep and I know in a matter of minutes my wife will be asleep, exhausted from two hours of trying to get E to sleep. Now, I am awake, unable to fall asleep, nose congested, head throbbing and cycles of feverishness causing me to uncover and recover myself for the better part of the next three hours. After watching a movie, a couple episodes of Two and a Half Men and part of some comedian's standup performance on Comedy Central, I drifted off to sleep somewhere around 12:30.
Little did I know, until 2:00, when my wife came into our room and asked me if we had any Melatonin nearby. Melatonin is a natural sleep aid and the best friend of a parent with a child impacted by autism. Melatonin takes a little longer to work than say four shots of Bourbon, but it is natural, legal and safe.
After finding a tablet of Melatonin in my emergency supplies, my wife shuffles off to E's room, resolving to try to get him back to sleep by herself so that I can get some rest. I drift back to sleep knowing that soon, the Melatonin will take effect and he will be asleep for at least the next 5 hours.
I wake at 8:30 feeling much better than the day before, wondering what a full 11 hours of sleep would have done for me, but resigned in the fact that I still got more sleep than my wife. E is still sleeping unaware that it will be a long day ahead for his parents.
Thanks to Melatonin for being a safe natural sleep aid.
Thanks for reading; more to come.
Since break started and without the structured regimen provided by school, E's sleeping has been a bit erratic. He tries to go to bed early, then is up in the middle of the night and sleeps to 8 or 9 in the morning. He is 12, almost a teenager. I don't expect him to have my sleeping habits which is usually 4 to 5 hours a night unless I am sick then it is more. E has his mother's sleeping habits, he needs a good 10 hours and he is good to go. Those 10 however, do not need to be consecutive, unlike his mother's sleep needs.
Needless to say, this break has been a little sleep depriving, even for me.
I am currently fighting off a cold. Not a bad one, but enough that I tried to go to bed at 7:30 last night. The last time I tried to go to bed that early I had pneumonia. I went to bed after taking a couple of Benadryls. It is 8:30 and I began to hear the following: E, what are you doing?, E, where are you going? E, go to your room and other questions and commands of a similar nature. I finally arose to an exasperated mom/wife asking me to see what I could do.
There is a definite hierarchy in the discipline/control function within our home. I have the luxury having my authority respected by E, while my wife unfortunately struggles to exert her parental control. To me, it's all a matter of perspective for E, E knows I will carry out every one of my ultimatums, while my wife is good for maybe, one of ten. She is getting better, previous, it was one of hundred.
This is a fundamental difference in our perspective of E. I believe he is my pre-teen boy who just happens to be non-verbal, impacted by autism and other health impairments. My wife treats him as a son, whose is a medically fragile, has autism and gives him a huge benefit of the doubt. We love him in our own way. I have been told by my wife that I expect too much; I tell her she doesn't demand enough. But I digress from this tangent and back to the story.
I walked over to E where he was jumping and bouncing off the couch, asked him to go to his room and get into bed. E looked at me, seeing my less than enthusiastic demeanor, got up and ran to his room. He climbed into bed, pulled the covers up to his ears and closed his eyes. What I couldn't see, but suspected was there, was an impish grin waiting for me to leave.
I stood in his room for about 5 minutes and waited. My wife looking up at me said, I got this. OOOOKKKKK, back to bed for Typhoid Me.
I look at the clock reading 8:40 and climbed back into bed and listened for a bit. I didn't hear anything. A good sign, but until I would hear E begin to snore I had a feeling that I shouldn't go back to sleep.
Sure enough, I began to hear my wife shushing E and telling him to lay down. It's 9:30. Suddenly, there are footsteps and my wife yelling, GET BACK HERE!
I go out to the loft, grab E's hand and lead him back to bed. He gets in giggling and smiling. I tell him it's time for bed. Instead of leaving, I lay down next to E and shush him with every squeak, sound or movement he makes. In a matter of 15 minutes, I hear the dulcet snores of my son. I arise from his bed and return to my own. Now it's 9:45, E's asleep and I know in a matter of minutes my wife will be asleep, exhausted from two hours of trying to get E to sleep. Now, I am awake, unable to fall asleep, nose congested, head throbbing and cycles of feverishness causing me to uncover and recover myself for the better part of the next three hours. After watching a movie, a couple episodes of Two and a Half Men and part of some comedian's standup performance on Comedy Central, I drifted off to sleep somewhere around 12:30.
Little did I know, until 2:00, when my wife came into our room and asked me if we had any Melatonin nearby. Melatonin is a natural sleep aid and the best friend of a parent with a child impacted by autism. Melatonin takes a little longer to work than say four shots of Bourbon, but it is natural, legal and safe.
After finding a tablet of Melatonin in my emergency supplies, my wife shuffles off to E's room, resolving to try to get him back to sleep by herself so that I can get some rest. I drift back to sleep knowing that soon, the Melatonin will take effect and he will be asleep for at least the next 5 hours.
I wake at 8:30 feeling much better than the day before, wondering what a full 11 hours of sleep would have done for me, but resigned in the fact that I still got more sleep than my wife. E is still sleeping unaware that it will be a long day ahead for his parents.
Thanks to Melatonin for being a safe natural sleep aid.
Thanks for reading; more to come.
Thursday, January 5, 2012
Winter Break
Hello all.
I know its been a couple of days since my last post but there are only so many hours of the day that I can write especially when E is off of school and at home.
As I previously wrote, we just got back from our west coast excursion to Vegas and Disneyland (the happiest places for adults and children, respectively). We were gone for 10 days and there is still 8 more days left in this winter break.
Being out of town afforded me several benefits specifically, my parents taking care of dinner, checks and buying this, that or the other things E, my wife or I might want. Thanks Nan and Kuya. There is also another benefit in that there are two other sets of adults to engage and/or watch E. This gives me and my wife several, randomly occurring ten minute breaks from our parental responsibilities. Those random breaks are like gold when we are free to sit and watch E engage his Aunt Annette or Uncle Ed or my parents. E will do a number of things to interject myself into a person's activity.
For instance, one night we were sitting around the dinner table eating pizza. E sat right next to his Aunt Annette, pointed to her piece of pizza and started eating it. Mind you she had already finished about a third of it. E then proceeded to take a big old tag from her water glass. My wife sat and laughed because this is a frequent event when she dines. Aunt Annette, shrugging her shoulders, grabbed another piece of pizza and asked Uncle Ed to get her a glass of water. After eating a third of that piece of pizza, she handed off to E. E smiled and finished the two "slices". All the while enjoying his time with Aunt Annette. My wife and I were also smiling and continued to enjoy our untampered, mangled or usurped slices of pizza.
This is not to say that Uncle Ed did not get his fair share of E time. My brother is a larger fellow, 6'4" and stocky. E takes the opportunity to climb, jump, swing and hang from his Jungle Ed set. Essentially, this routine starts with a full speed collision by E into Ed, who then lifts, holds, wrestles, tickles, contorts et al. E, who giggles throughout the course of this encounter. I take these moments to watch, relax and just enjoy Ed's uncle time with E.
Because of E's extremely limited of verbal expression, he relies on my wife and I to interpret for him or technology to speak for him. He is rather adept of incorporating technology to serve his communication goals. My wife and I are adept at understanding his limited verbal express and unique gestures and translating them for my family. My family is getting better at deciphering E speak, but sometimes they have a tendency to speak louder to E as you would observe a conversation between two people who don't speak the same language. Again, it is another opportunity for me to laugh and joke.
Time with my family always comes to an end too soon and we are back home prior to the end of winter break. We can't spend the entire time on vacation for many reasons. Often we take the remaining winter break to schedule doctor's appointments. Given the medical plan that E is on, E typically has to see his physicians of which there are six every six months. So I try to follow a January/July schedule. Like everything in life, sometimes it works, sometimes it doesn't. This week we saw a smaller group of doctors, who have pronounced him in good health, but it still leaves a lot of free time.
While I do enjoy my alone time with E, there is a lot of time to fill during the day. Given that the average temperature in Illinois in January is in the forties, there isn't much opportunity to plan outdoor activities. So, the search is on for indoor activities. There are a couple of options, such as arcades, malls, pools, visiting friends or museums, but these activities can't swallow up a whole day. Well, at least they never have for us. This week we have gone swimming, played at Gameworks and walked through Legoland. I still have tomorrow to plan before our weekend regimen begins and I have no idea what we will do.
This next statement may sound counter-intuitive to you parents with neuro-typical children: E misses school. He misses the structure. He misses his classmates. He misses the hour drive to school. He misses the teachers and the IBIs (aides). School gives him an opportunity to be with kids who are like him and adults who understand him. Even though I understand him, it isn't the same because I am his dad and that in his mind is part of my job. On the last day of school prior to winter break, the IBIs gave all the students countdown calendars until school would start again. All of his classmates were sad that school was going to be out of session for over two weeks. I know the parents felt the same way, but for a different reason. In the special needs community, every family member looks forward to school starting, the parents and the children. If I asked E if he wanted to go to school tomorrow morning, he would immediately go, get his shoes and ask me or my wife in his special way to help him put them on and get off to school.
It will be a bittersweet day this coming Monday when E goes back to school. While I love my time with E, I also enjoy (with a little guilt) my time away from him.
Thanks to all the hardworking special education teachers, aides and therapist that provide a safe, fun, educationally challenging place for children impacted with developmental disabilities to learn and become part of a community.
Thanks for reading; more to come.
I know its been a couple of days since my last post but there are only so many hours of the day that I can write especially when E is off of school and at home.
As I previously wrote, we just got back from our west coast excursion to Vegas and Disneyland (the happiest places for adults and children, respectively). We were gone for 10 days and there is still 8 more days left in this winter break.
Being out of town afforded me several benefits specifically, my parents taking care of dinner, checks and buying this, that or the other things E, my wife or I might want. Thanks Nan and Kuya. There is also another benefit in that there are two other sets of adults to engage and/or watch E. This gives me and my wife several, randomly occurring ten minute breaks from our parental responsibilities. Those random breaks are like gold when we are free to sit and watch E engage his Aunt Annette or Uncle Ed or my parents. E will do a number of things to interject myself into a person's activity.
For instance, one night we were sitting around the dinner table eating pizza. E sat right next to his Aunt Annette, pointed to her piece of pizza and started eating it. Mind you she had already finished about a third of it. E then proceeded to take a big old tag from her water glass. My wife sat and laughed because this is a frequent event when she dines. Aunt Annette, shrugging her shoulders, grabbed another piece of pizza and asked Uncle Ed to get her a glass of water. After eating a third of that piece of pizza, she handed off to E. E smiled and finished the two "slices". All the while enjoying his time with Aunt Annette. My wife and I were also smiling and continued to enjoy our untampered, mangled or usurped slices of pizza.
This is not to say that Uncle Ed did not get his fair share of E time. My brother is a larger fellow, 6'4" and stocky. E takes the opportunity to climb, jump, swing and hang from his Jungle Ed set. Essentially, this routine starts with a full speed collision by E into Ed, who then lifts, holds, wrestles, tickles, contorts et al. E, who giggles throughout the course of this encounter. I take these moments to watch, relax and just enjoy Ed's uncle time with E.
Because of E's extremely limited of verbal expression, he relies on my wife and I to interpret for him or technology to speak for him. He is rather adept of incorporating technology to serve his communication goals. My wife and I are adept at understanding his limited verbal express and unique gestures and translating them for my family. My family is getting better at deciphering E speak, but sometimes they have a tendency to speak louder to E as you would observe a conversation between two people who don't speak the same language. Again, it is another opportunity for me to laugh and joke.
Time with my family always comes to an end too soon and we are back home prior to the end of winter break. We can't spend the entire time on vacation for many reasons. Often we take the remaining winter break to schedule doctor's appointments. Given the medical plan that E is on, E typically has to see his physicians of which there are six every six months. So I try to follow a January/July schedule. Like everything in life, sometimes it works, sometimes it doesn't. This week we saw a smaller group of doctors, who have pronounced him in good health, but it still leaves a lot of free time.
While I do enjoy my alone time with E, there is a lot of time to fill during the day. Given that the average temperature in Illinois in January is in the forties, there isn't much opportunity to plan outdoor activities. So, the search is on for indoor activities. There are a couple of options, such as arcades, malls, pools, visiting friends or museums, but these activities can't swallow up a whole day. Well, at least they never have for us. This week we have gone swimming, played at Gameworks and walked through Legoland. I still have tomorrow to plan before our weekend regimen begins and I have no idea what we will do.
This next statement may sound counter-intuitive to you parents with neuro-typical children: E misses school. He misses the structure. He misses his classmates. He misses the hour drive to school. He misses the teachers and the IBIs (aides). School gives him an opportunity to be with kids who are like him and adults who understand him. Even though I understand him, it isn't the same because I am his dad and that in his mind is part of my job. On the last day of school prior to winter break, the IBIs gave all the students countdown calendars until school would start again. All of his classmates were sad that school was going to be out of session for over two weeks. I know the parents felt the same way, but for a different reason. In the special needs community, every family member looks forward to school starting, the parents and the children. If I asked E if he wanted to go to school tomorrow morning, he would immediately go, get his shoes and ask me or my wife in his special way to help him put them on and get off to school.
It will be a bittersweet day this coming Monday when E goes back to school. While I love my time with E, I also enjoy (with a little guilt) my time away from him.
Thanks to all the hardworking special education teachers, aides and therapist that provide a safe, fun, educationally challenging place for children impacted with developmental disabilities to learn and become part of a community.
Thanks for reading; more to come.
Monday, January 2, 2012
TSA
Out of all of the alphabet soup agencies that exist in the world, the TSA does the best job in dealing with my son. I repeat: The TSA does the best job.
Now I admit my opinion is based solely our interaction with the TSA. I have not looked or observed how the TSA does with other impacted individuals. My son, wife and I fly about four times a year. Thus, at a minimum, we have to pass through security at an airport at least eight times. This sample size isn't great, but for this analysis it must suffice.
Now why do I say the TSA does a good job. Well, most every TSA agent sees us coming from a mile away and gives us a wide berth. It isn't hard to notice us as we are one of the few with a pre-teen son that:
1. Isn't running his mouth off
2. Has his eyes glued to a smartphone watching YouTube videos of elevators, movie credits or theme park rides
3. Isn't texting on said smartphone
4. Is carrying and sniffing his blankie
5. Lets out a little shriek of happiness at being at the airport
6. Doesn't mind being with his parents
7. Is flapping his arms or pointing up
and probably countless other observations that I may be oblivious to noticing.
In the past, the ID and boarding pass inspector used to try and get E to say his name and age. Today, they simply check off his boarding pass and send us onto the next hurdle of security: Metal detectors and x-ray machines.
Upon entering this line, one of two things occur. Either a TSA agent will pull us from the line and move us to the front of a line or other passengers immediately choose whatever line we are not in. I always laugh because given the amount of electronics and other items we carry, we are faster than most groups of three or more. The only difficult part of this process is making sure my son does not run his hands along the inside of the metal detector. However, most TSA agents see his challenges, smile and usher him to my wife who has already passed through the detector first.
After everyone has passed through the detectors and we have collected our electronics and other assorted items, we regroup and head off to the gate.
On our recent trip we had the opportunity to encounter a TSA agent at the Long Beach Airport. From my perspective this is a perfect airport for our traveling needs. Why? The ticketing area is small. Just two airlines fly into Long Beach. There are five gates which are all part of the same side of the airport. From ticketing to gates is all of about 100 feet, perfect for my son, whose hypotonia causes his muscles to fatigue quite quickly.
Back to the TSA agent in Long Beach. We had just passed through the metal detectors and were collecting our electronics and other items, when the TSA agent walked up to me and said, "I'll take your son's shoes over to him." Now, this isn't the typical statement you expect to hear from a TSA agent. I handed her his shoes and said, "Thank you". I collected the rest of our stuff and went and sat down next to my wife and son to regroup. She said her son was on the spectrum and understood what it takes to travel. We asked her more about her son; she asked about ours. She wished us well and we headed for the gates.
Long Beach Airport isn't for everyone. As we sat by the gates, most people were complaining, sleeping, grumbling or otherwise unhappy with the experience. It's a no frills airport and for us, it works.
As I said we travel quite a bit, as E likes to go, go, go (on United). Not once (knock, knock on wood) have we had a TSA Agent act in any type of manner which singled us out or singled E out because of his autism. All of been very respectful of E and have gone to great lengths to make sure he is comfortable throughout the whole screening process.
In fact, once when going through security an adult passenger traveling with his older mom slammed his tray into my hand pinching it between his tray and the one my hand was pushing. I pulled my hand out, shaking off the pinch. The passenger offered no apology for the pinch. A TSA agent asked me what was wrong and why I was shaking my hand; I explained the pinch. The agent pulled the mom out of line and informed her that she was picked for a more intensive screening. The passenger began to protest and was told that if he didn't sit down, wait and stop interfering that he would be subject to an even more invasive screening. I am not sure if it was solely to the passenger's poor manners or due to the challenges we are presented with when we travel that was the cause of the more intense screening. However, that agent put a smile on my face as I walked about from security. As I walked away, I turned a gave a quick wave to the agent, who gave me a quick nod, as she was instructing the passenger's mom, to hold her arm's out, palms up.
Thank you to the TSA for understanding E when we travel.
Thanks for reading; more to come.
Sunday, January 1, 2012
A New Year, A New Endeavor
Today is 1/1/12. I have decided to embark on a new endeavor. This project will be to write this blog about autism awareness, events, my family, my perspective or whatever really comes to mind.
Over the past 10 days, my wife, son and I were traveling for the Holidays. For the first week of vacation, the three of us spent it in Vegas with my parents, brother and sister-in-law. The time spent with the parents, brother and sister-in-law is always fun as well as challenging. Balancing my time between my son and wife and my parents, brother and sister-in-law can be a little nerve fraying. However, I believe we escaped otherwise unscathed and left for three days at Disneyland.
We arrived in Long Beach after a 40 minute flight. It took nearly as long to rent a car. Suffice to say, that while the trainee at the Avis counter was a pleasant and friendly as a customer service representative could be speed is not yet an attribute she has attained. Finally, on the road, we made the drive from the airport to Disneyland in under a half hour. Yes, it also took longer to rent a car than drive 27 miles, but I digress.
We arrive at Disneyland, check in and head out to California Adventure Park. This park has three of my son's favorite rides: Soarin' over California, Mike and Sully to the rescue and Toy Story Mania. To be honest I like two of the three rides too. We called it an early evening and decided to get out to the parks early the next day.
A little Disney knowledge may be necessary. Disney has a system in place to assist guess who require a bit more assistance due to a developmental or physical disability. This system is a godsend to families with children impacted by autism. It makes the trip easier for the parents and allows an expedite trip through the theme parks.
Both DisneyWorld and Disneyland provide this accommodation to guests. My family is a frequent traveler to both Disney resorts. We have put this accommodation to good use to provide our son an opportunity to enjoy a visit to the theme parks. It is a good system but not without abuse. To put it bluntly, DisneyWorld guests abuse this accommodation significantly less than Disneyland guests. The number of individuals that visit Disneyland that I saw who circumvent the rules to access this system is staggering. In my opinion these individuals further insult individuals impacted by development or physical disabilities and their families. These individuals already stare, mock, or otherwise engage in boorish behavior towards those who struggle to overcome their disabilities. While Disney provides the facilities to provide a setting for the Happiest Place on Earth, these individuals take away the one equalizing system that makes a trip magical. For those individuals who have questions or complains about this system, I can only speak for myself, but ask me about why we are in line, about my son and how this makes him feel like every other 12 year old.
I can deal with the noise, the heat, the cold, the wait, the staring, pointing, laughing et al. What I cannot deal with is when individuals subvert a system designed to bring a little more joy to the lives of those impacted by disabilities.
The smiles, laughs and joy that I see on my son's face when we are at any one of the parks is priceless and a moment of pure happiness that cannot be replicated.
However, our trip was not all about being upset with a few individuals. We met several families with impacted with autism. A parent of a child impacted by autism can always put another family. On Space Mountain and It's a Small World, we encountered other families impacted by autism enjoying Disneyland Park. In short conversations during or after each of these rides, we were able to provide and received advice, encouragement and laughs as well as a few stories regarding our experiences in the theme parks. It was these opportunities in community that made that boorish behavior of others dissolve into the smiles, laughs and happiness.
Thank you to the other families impacted by disabilities that put themselves out in the world and live life for reminding me why we do what we do.
Thanks for reading; more to come.
Subscribe to:
Posts (Atom)