MommyGuilt: Whinings & Joys of a Working Mom

An All-Call for your Input

2008-02-12T18:22:00Z

I want to hear from YOU! I am working on a story and would love to include your thoughts and experiences. Parents with special needs children: YOU need to read this. I need your input to help other parents just like us. I lost this post in the crash of Chicago Parent, but had posted a hardcopy in my son’s OT office. Please take a moment to read and, please, feel free to respond to the email listed here or in a comment on the article.

Repost from 10/22/07

As the mother of a child on the autistic spectrum, I’ve often wondered how everyone else does it. Does every family with a child on the spectrum, or with any other special needs get frustrated? Find moments of joy in the smallest of triumphs? Feel the need to just break down and cry, if for nothing more than a moment of allowing yourself to be vulnerable? Feel the need to escape every once in a while? Do anyone else’s ears perk up, even in the most crowded locale at the sound of someone else, clear across the room, talking about their child, with the same issues as yours? How about moments of guilt, anger, sadness: at yourself, others, teachers, school districts, strangers, family members, those who just don’t get it, government for not helping out more? Do you find yourself getting teary-eyed when you read a little blurb about a child with issues similar to your child’s doing something wonderful – sharing in that parent’s joy? Do you get angry when your child’s teachers just won’t listen and continue to label your child as a behavioral problem when, in fact, they simply do not know how to interact? How do YOU balance the myriad of places, finances, jobs, therapists that are necessary, and all of the time spent dedicated only to your child’s well-being?

What about faith? Does that play a part in how you get through? How about humor? What about the rest of your family?

What do you do to relax & release?

How many times have you sat at the various therapies (as I am now), IEP’s team meetings, interventions, doctor visits, and looked at the other parents there and wondered what exactly it is that they do to keep it together? That is exactly how these questions came to me: as my husband and I sat in the lobby waiting for our son, SmallBoy, as he worked with his OT (as we’re doing now). I see parents all day at my job- some have kids with seer learning disabilities, autism, ADHD. I see parents at our son’s behavioral therapist and occupational therapist and I wonder, “Hmmmm – what is it that THEY do? I know they could tell me volumes about their child and educate me inside out on their child’s disabilities/issues, but what do THEY do for themselves?”

There are so many stories of what our children are like, how delightful they are and the joy they bring to our lives. There are happy stores, and some that are so sad, others that bring hope in the wake of tragedy. I am in the process of researching how we, the parents and family members of these precious angels, get through the day to day. I am focused on US as well, because it’s so important that WE can keep it together when we need to, that we, too, have to “let it all out” from time to time. My hope is to write an article about US that will, perhaps, help other parents like us and, ultimately, help educate those who have just heard the words, “Your child has _______.”

If you are interested in sharing your story with me, please email me at tinanmike@sbcglobal.net, and use “How WE do it,” in your subject line. No need to send me your whole story right away, I’d love to converse with you prior.

As a side note, after sending this same request to my family, my mother-in-law wrote back about an experience she had wile vacationing in Mexico:

“Hi Teen…When I was in Mexico…I was sitting around the pool…and I was mentioning my worry about getting [SmallBoy] mini bongo drums…because noise might be irritating…but I wanted him to feel part of the very musical family….She (a total stranger) slid up on her float and said…,’Why would sound be irritating?’

“…and I said, ‘My grandson has Asperger’s.’
“…and she said, ‘I have a grandson with AS.’

“Then another lady floated up and said, ‘My nephew has AS.’

“Anyway…the fact that I said…’[SmallBoy] has AS,’others came around and bonded with me. I think they liked that I just talked about it.

“My point is, of course, …we come together as a group of people in our caring…and our knowledge of AS…we realize…it is all around us, and we better do something about it now…but that they are the dearest children on earth….”

My husband and I TRY to have a date night where we go out, even if only for an hour, grab a beer and let our frustrations out playing Ms. Pac Man. We pour our emotions into our music, but sometimes that’s just not enough. It’s hard sometimes to keep it all “aside” until you’re out to vent. What do YOU do?

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Same Airport, Different Day (and seriously, what happened to Bob?)

2008-02-01T23:28:00Z

There's no better welcome home to Chicago than a great hot dog from Gene & Jude's, where my husband and I stopped on our way home from my excruciatingly long, non-traveling day at O'Hare. Home we went, met by smiling children, filled with joy and excitement that Mom hadn't really left for a business trip....

No, wait, that was in my dream. Home we went, met by two teenagers,

"Oh, hi Mom," and an irritated SmallBoy,

"MOM! WHY ARE YOU HOME? YOU'RE SUPPOSED TO BE IN CONNECTICUT!!!"

Apparently I interrupted the plans for the week of male bonding. This was all soothed over when I announced that I was not home for good, but going back in the morning to try once again. Within five minutes, my SmallBoy was pleased as punch and having me watch him Wii (did I ever mention that we DID, in fact, get one?).

We all hung out and just did pretty much nothing for the evening. It was absolutely delightful to spend one more night in the routine of my life, with the ones I love the most (except my brother-in-law...just kidding, ET. The curry soup smelled heavenly).

We didn't rush so much on Tuesday morning, especially since my luggage did not need to be checked. The customer service agents had assured me that it would be awaiting my arrival in White Plains; therefore, I only needed to be at the airport 30 minutes before my flight. My husband and I had plenty of time to get the kids off to school and stop at our favorite coffee shop before heading back for Round Two at O'Hare.

I am the type of person who, despite my own best efforts to be late, cannot stand even being on time. For me, on time is late. I factored in the time to get through security and to get from one side of the United Terminal on Planet O'Hare to the other side and made certain that we arrived about 45-50 minutes prior to my flight.

With the knowledge of the layout of Concourse E/F singed into my visual memory, I planned my route and found my way back to my originally scheduled departure gate, with a quick stop at the airport McD's for a biscuit & OJ, and a brief wave at the shoe shine guy from the day before. I made it in record time. I made it a point to keep checking, religiously, the flight boards for the big yellow letters that announced to the entire terminal delays and cancellations. So far, so good. I was going to get out this time.

I spread out my coat on my seat and nestled into my little corner with my biscuit and my sudoku and waited. The flight was on the board, still scheduled to depart at 10:47am. I called my mother and sister, also scheduled to depart that day, on a much bigger plane and to a much warmer destination. We joked about how if my flight was delayed we should hook up for coffee or a bite to eat, depending on delays. I told them not likely since the flights were still going on time.

As I sat in my "nook,” I watched a mom trying to soothe her restless baby and manage baby, luggage, and stroller all at the same time - she did well, I might add. I had to stop and laugh, though, when I turned my head to see this little pair of gym shoes coming down the escalator. As I looked some more, I noticed that the shoes were attached to a little blond boy with spikey hair, wearing his favorite - or at least, well loved - shirt. This cutie boy was riding down the escalator on his derriere. When he reached the bottom, he walked over to the up side and did the same thing. Clearly bored, this little guy found a fun way to entertain himself.

10:00 came and my flight was still scheduled to depart on time. I was so certain that I was getting on this flight that my previously alleviated, small craft jitters began to return and create a small feeling of anxiety within my chest. I could feel my heart pounding and my breathing get a lot more labored. It actually took a while before I figured out exactly WHY I was feeling like this. I thought about the fact, again, that all of these people in the waiting area must have felt like this at one time or another and then, ultimately got over it - even my favorite business traveler, Bob, if he hadn't already rented a car and driven.

We were scheduled to begin boarding at 10:27. At 10:20, the announcement came that our plane was delayed coming in and would be landing momentarily. We were assured that as soon as the passengers had deplaned and the cleaning crew had gone through, that we would be boarding. I called home and let my husband know what was going on, called my mom and sister and told them that I would most likely NOT be meeting them at the airport for coffee or lunch and to have a safe trip. As I hung up, our departure time, due to the delay on the inbound flight, was pushed to 11:30 - ok, no biggie. That would then put our arrival into White Plains at 2:30 and would still allow me plenty of time to get to the office.

FINALLY I was getting somewhere. The boarding call came at 11:10. I was finally going to make that tarmac walk out to the plane. Thankfully, the weather was nice, cooler than the day before, but still in the 40’s. As I stepped on each little tier of the drop down stairs to the plane, I had to chuckle while fighting the urge to turn and Rock Star Wave to an invisible crowd of screaming fans.

I came back to reality, as I had to duck my head while boarding the plane. WOW, this plane was TINY. I was in seat 1D (no First Class on these planes, so row 1 was "regular" seating…LOL). I struggled to place my computer bag in the miniaturized overhead bin that couldn’t have opened more than 8inches. Maneuvering my way back to my seat involved a bit of a struggle as I tried to balance my purse, my coat, and my nerves as I “settled” into the tiny seat without bumping my head on the overhead bin. Unlike a regular plane, there was no extra room for standing upright. I must have hit my head at least 5 times.

Once all 12 of us, if that, were settled on the plane, the flight attendant asked us to please redistribute ourselves around the plane, since we were all in our assigned seats in the first 6 rows, thus causing the plane to be top heavy. At that moment, my stomach flip-flopped as I worried about the airworthiness of this fine flying machine.

I moved to a seat in the exact middle of the plane; at least if the plane went down, it wouldn’t be because I was sitting in the wrong place. I was wishing there was a beverage service on the plane to help settle my nerves. I fly well. I don’t normally get too jittery. Heck, I flew to Italy with my church choir in October of 2001. That was perfectly lovely. I thought back on Bob – would he have been this jittery? Bob? Hmmm, doubt it.

Centering, feng shui, payers prayed and mantras chanted, I was prepared. Bring it on! In two and a half hours, my biggest worry would only be making certain that I didn’t get lost somewhere in Connecticut.

“Ladies and gentlemen, this is your pilot speaking. Thank you for your patience today. Unfortunately, I just received word from the tower that our flight has been cancelled due to the high winds still in the area. Again, we apologize for the inconvenience. Please reenter the terminal and proceed to the customer service counter.”

All I could do was laugh. Laugh and think of Bob who, I imagine, would have been upset to John McEnroe proportions. I didn’t know who to call first, my office, my husband, or my mother and sister who were already at O’Hare waiting for their flight.

As I made the walk to the customer service counter, I dialed my office told them what happened and got the ok to cancel the trip. I called my husband to let him know I’d need a pick up again. I called my mother and sister and arranged to meet at the Starbucks in Concourse B – the one United Airlines concourse I had yet to visit on my “trip.”

It took a bit of chatting, and a bit of my knowledge of corporate travel and dealing with Bob, to convince the counter agent that I was not rebooking on the 1:30 flight that was, in fact, NOT going to get off the ground, as the weather that cancelled my flights for the last 36 hours was only going to get worse as the day dragged on. She reluctantly “de-booked” me from the 1:30 flight and issued me a full refund. I inquired about the status of my baggage which, she, of course, told me I’d need to check with the baggage claim department, as it looked like my baggage had made it to White Plains on the ONE flight that made it out on Monday and had arrived in White Plains at 2:00 in the morning. The irony – even if I had made it on Monday, I would have spent even more hours on the other end just waiting for my luggage.

At Concourse B, I got to meet up with my mother and sister for a few minutes, share some coffee, and send them on their way to sunny Orlando for the trade show they were attending. They laughed at my naiveté about the ease with which I was expecting to retrieve my luggage. I wondered if Bob, in all of his travels, ever had to deal with lost luggage and, if so, how the poor baggage agent dealt with him. I laughed to myself.

I waited in line at the baggage claim counter to find out the status of my suitcase. I knew it was in White Plains, but had no idea what needed to be done for retrieval. I watched the poor man in front of me, fed up with travel woes already, become ever so irritated and angry, that no one had a clue where his luggage ultimately ended up. At least I knew where mine was and only had to deal with getting it returned.

By the time I got to the counter, my clothes were sticking to me from the sweat caused by frustration, warmth from wearing my coat so that it would be one less thing to carry, and from the walk and worry. The baggage lady assured me that my luggage was, in fact, in White Plains (DUH!) and had me fill out a baggage report. She told me that it would arrive back at O’Hare within 24hours and that I could either come to the airport to pick it up or have it delivered C.O.D. to my door. When I weighed the cost of the C.O.D. to the cost of gas and parking and my time waiting for the call, I decided to just pay and have it delivered home.

It finally arrived back at my house at 1:30am Wed night/Thursday morning. That was fun. At least it was home. I know now exactly what to pack in my carry on next time. I tried to get around the whole liquids in the carry on pain, but now realize it might be worth it to just suck it up.

I learned a great deal this week, the main thing being that I made the right decision about leaving the corporate travel industry. The second, that I can now navigate my way through O’Hare blindfolded. Thirdly, that watching stressing over flights just isn’t worth it. I learned that children are great fun to observe as they try to pass the time, shoe shines for women are perfectly acceptable, that puddle jumpers were not built for basketball stars, and that being stuck at the airport for two days could, potentially, cost a pretty penny.

I’m home. It’s Friday. I was supposed to return to Chicago today. I had to laugh this morning when our office closed for a snow day, SmallBoy’s school closed, but the high school that never closes did not fail in maintaining its streak. Had I made it to Connecticut, I would still be there today, sitting, waiting, possibly until tomorrow, for a flight back home, and wasting a perfectly lovely snow day.

Bob – oh him! It turns out that Bob and I, after many years, have now ended up as members of the same church and school community. It funny the first time we ran into each other again, both knew immediately who the other was. I laugh at Bob and rub it in his face that he is the sole reason why I left the travel industry. Boy will he laugh when he reads this! Thanks for the lessons, Bob!!

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Business as Usual? (a Winter Day at O'Hare)

2008-01-30T21:19:00Z

So, seriously what happened to the flight and what is the relevancy of Bob?

Continuing from part one of my post, “Working Mama Becomes Ultimate Business Traveler Mama – (and Who is Bob)”, I had now sat through two flight delays, and, ultimately, cancellations, while trying to get out to White Plains, NY on a business trip to Darien, CT. The reasons for the delays came from the Chicago weather and the winds making take-off and landing for our small crafts dangerously impossible. I watched passengers become increasingly irritated and frustrated at the delays and cancellations, ultimately, blowing up and letting off steam at the gate agents, their secretaries or travel agents, or, as I was doing, sucking it up and accepting it by plopping down on the floor – in my case half on carpet and half on tile propped up against a post. Truly, there was nothing that any of us could have done but to kick back and relax.

My Bob, because he is MY Bob, the reason that I quit arranging corporate travel, would have been on the phone with me, from the airport, very much disgruntled at my inability to speak some weather incantation to make the winds cease, the planes magically appear, and have them ready for take off as soon as he settled into is aisle seat – with the placard,

“THIS FIRST CLASS AISLE SEAT IS RESERVED FOR BOB. TAKE IT AND SUFFER THE CONSEQUENCES.”

The delays, if you will, gave me ample opportunity to people watch, a pastime I quite enjoy. I saw business travelers, leisure travelers, those bolting to meet connections – foolishly wearing high heels…silly, those trying to appease their impatient and completely bored children, and plenty of military.

As I followed up with my grumbling tummy, waiting for rebooked flight #3, I had the pleasure of sitting next to Warren, a soldier on his way home to Traverse City, MI for a 2 week leave from Afghanistan. He had already been traveling for 22hours on multiple planes through too many cities. The final leg of his flight had also been delayed.

Warren had been overseas for 8months or so, away from his wife and 4 children; three girls, one boy, and another girl set to arrive on or around February 6. We talked about what he does in the infantry, about our children, the weather in Afghanistan compared to the weather in Chicago, airports, more about our kids, and his remaining 2 months of his tour. It was an absolutely exhilarating conversation. There was no political talk, no talk of views on the war, just two parents trying to get somewhere and talking about being separated from their children.

He finished his lunch and wished ME luck on MY travels (boy was THAT backwards?). I wished him luck with his flight and his new daughter. I suppose he was probably more anxious than I to get on his flight. Me, well, I was heading out for work, he was heading home to a family and his kiddos that he hadn’t seen for the better part of a year. Godspeed, Warren!

By 3:00, when I should have already been on the ground from my originally scheduled flight, gotten my rental car, retrieved my luggage, gotten lost and then found my way to our CT office, I remained seated waiting for the 4:10 flight, which was then scheduled to 5:30. I couldn’t do any more sudoku, something I thought impossible, because my brain was fried that even the super easy levels were too challenging. I had been at O’Hare airport for almost a complete workday, had seen two different parts of the United Terminal, watched the weather change from balmy and 50 to rainy, windy, and yuck. My eyes were confused and didn’t know if they should be complaining that it was too early to be open or screaming because my contacts were dry and wanted out.

At 5:45, our flight was cancelled. We were all sent back to the customer service counter to get rebooked on the next available flight (seeing a pattern yet?). Flights to multiple cities were also cancelled. By the time I reached the customer service counter, it was flooded with every, now, “resident,” of Concourse E/F trying to change their flights, get their money back, or, at the least, get lodging for the night. I called home. “Honey, I’m getting no where tonight. Can you please come and get me? I have no idea how long this is going to take, I’m about ¾ of a mile into this line.” At long last, I got to talk to the customer service agent because I screwed up using the automated system and had to get back into the now 2mile long line at the end. Ok, so it wasn’t 2miles, maybe only a mile and a half. It was now just about 7:15pm, 90 minutes after my flight had gotten cancelled.

“Ma’am,” (cringe), “when your flight is cancelled you’re automatically…” “…rebooked on the next available flight,” I finished her sentence from the memory of my previous encounters.

“Listen, there’s no way I’m getting out tonight and, since I live in Chicago, I’m going home. Please, if you will, rebook me on a flight tomorrow morning and cancel the one I’ve been automatically rebooked on.”

“But ma’am, you’re automatically…”

“Yes, I know. That flight, I’m sure, will also be cancelled. I’m going to bed. Just tell me what I need to do about my luggage.”

“Well, ma’am, your luggage will be put through on the next available flight and will be in White Plains when you arrive.”

“Great. Can you please confirm me on a morning flight?”

She set me up, put me in seat 1D, printed me up a new boarding pass, and I headed out from Concourse E/F, waved a fond farewell and bid adieu to the travelers with whom I’d spent my entire day, and, would likely see the next day, and got in line for the tarmac shuttle back to Concourse C, to wait for my hubby. On my stroll back, I had time to reminisce about some of the things I’d seen and done that day: I’d gone and sat at a “bar” by myself and talked to total strangers. I had a gate agent who looked, sounded like, and I SWORE was Chris Rock, especially since he’s supposed to be in town at the Allstate Arena soon. I saw a man walking through the concourse who could easily have been Lex Luthor – the “Smallville” version, not the Gene Hackman version. I saw another man from my town walk by (though, by the time it dawned on me WHY he looked familiar, he was long gone). I also saw people doing the full on O.J., sprinting for their connections.

I also got my shoes shined. THAT was cool. I’d seen the men up there all day, on my many walks up and down, back and forth on the concourses, and toyed with the idea of having my salty and dirty shoes shined. Finally, I hopped up next to a young gentleman, probably 30 years old, who was – wait for it – stuck at O’Hare waiting for his connection to take off. At this point, it was 3 or 4:00. He was supposed to be in Oklahoma City for a 6:00 interview. Hmmmm…..not happening. Fortunately for him, the company he was interviewing with was very up to date on the weather in Chicago and scheduled him for the next day. It was really a neat feeling to be up in that shoe shine chair. I watched the little girls walk past with their families and look up at me like I was a princess sitting up on my throne, having my servant shine my shoes. I could almost picture the scene in my head by watching their faces. On the flipside, I watched the befuddled faces of the men walking by, shocked that their man-turf had been invaded by a woman. One man and his wife were walking by while I was up there and remarking on the words out of most mouths that day:

“Stuck at O’Hare. The three most common words heard. Stuck at O’Hare. Might as well have it tattooed on your (fill in expletive of choice) forehead.”

Bob. What about Bob? I laughed. Bob would have ~~probably rented~~ had me rent a car a car and driven himself by this point.

I met my husband back up at departures, climbed in and kissed him hello, just as quickly as I had kissed him goodbye since we were, once again, being glared at by the TSA for picking up on the upper level (sorry boys). On the way home, my dear sweet husband stopped at Gene & Judes Red Hots for some delicious Vienna beef topped with the best darn home fries EVER! Home. My own bed. Ready to go back the next morning.

Wanna know what happened? I still haven’t told you if I made it to Connecticut or not, nor anything else about Bob. Stick around. I’ll finish the story next time.

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Working Mama Becomes Ultimate Business Traveler Mama - (and Who is Bob?)

2008-01-30T04:27:00Z

My “day off” at O’Hare began as a regular day, just with a longer commute to work. My husband and I dropped the kids off at school and followed the usual morning routine, slowing down only to wave a fond hello to my office as we drove past.

My flight to White Plains, NY, ultimately ending at our Connecticut office, was scheduled to leave at 10:47am Monday morning. I was more than a little hesitant bout flying on a 12 ½ row plane, but had come to terms with it and was relatively ok.

The weather on this late January morn was partly sunny and a balmy 48 compared to the sub-zero temps of only a few days ago (can you believe there are still people who don’t believe there’s global warming?). I kissed my husband a quick goodbye at the curb to stave off the always suspicious glares of the TSA who only allow for a rolling drop off of passengers, checked my bag and entered the terminal.

I’ve become quite familiar with the United Airlines terminal at O’Hare, and navigated my way through my usual entrance and usual security booth only to find that I was at the opposite end of the world of O’Hare from where I needed to be. No problem, though, since I had adhered to the, now, standard guidelines and arrived 2hrs prior to my flight.

As I walked down concourse E/F, I encountered the first of many surprises and changes for the day – the arrow pointing down the stairwell, to the tarmac, where my gate was located. This really should not have thrown me, since I knew I was traveling on a small plane, but it did. I quickly came around, though, and became comfortable with it as I looked around at tall of the other people, all ages, and from all walks of life, also waiting for their walk down the tarmac, probably regulars on these routes.

The morning seemed to be flying, pardon the pun, as one flight after the next boarded and departed. Finally it was boarding time for the flight just prior to mine when the announcement came in letting those passengers know that their flight had been oversold and asking for volunteers to give up their seats. As a former corporate travel consultant, I expected a lot of grumbles and under-the-breath cursing. None was heard. I attributed this to my theory of repeat travelers who have become extremely familiar with these kinds of minor obstacles, if you will.

I phoned my husband to chat, check in, express my boredom and get in one last “I love you,” before my tarmac walk to the itty bitty metal bucket scheduled to transport me safely to my destination. No sooner had I hung up and packed my cell phone snugly into my purse did my itinerary change on me. With one little announcement, I officially became a REAL business traveler.

    “Passengers scheduled to White Plains: the flight has been cancelled. Please proceed to the customer service counter.”

In an instant, I flashed back to Bob – the reason I ended my career in corporate travel. Bob would call me, irate that his flight had been cancelled, demanding that I find him a new flight - NOW – that would not disrupt anything on his arrival end – oh yes, and that I make sure he had his aisle seat as well.

Once I snapped out of it and returned to the present, I made myself a promise that I would not become Bob., a promise I needed to make several times. I proceeded to customer service and accepted my fate. As long as my luggage and I ultimately ended up in the same place, and as long as I would be asleep in a snuggly bed, then not much else could throw me. I was re-booked on a flight scheduled to leave 2 ½ hrs after my original flight, with the departure gate back near the other end of the World of O’Hare where I first entered. Fortunately, there was a great little shuttle that cruised the tarmac from Concourse F to Concourse C.

I called home to let my husband know of my change and called my Connecticut office to let them know that I probably wouldn’t get to the office since my flight wasn’t scheduled to arrive until about 4:45pm. I then called my office here to let them know about the change, and to sweetly ask my fabulous assistant, EB, to contact our corporate travel department to let them know so that they could make the necessary modifications to the my delayed arrival; working with Bob all those years taught me many things, including how to make sure those small, yet amazingly important details are attended to.

I shuttled over to my next gate and snuggled up doing sudoku to pass the two or three hours until my next scheduled attempt at boarding. I had begun to memorize the constant flow of announcements that trickle into the airport subconscious:

      “For the health and safety of our passengers, smoking is not permitted in the airport or on the roadway in the departures area. Smoking is permitted on the lower level at arrivals.”

        “Airport transportation can be found at the transportation kiosks or at the arrivals level of the airport. It is illegal for transportation providers to solicit on the upper level.”

Blah blah blah. Once I recognized that the deep guttural grumblings that were interrupting into these announcements were actually my stomach trying to send me a message, I went in search of sustenance. I passed a flight info screen on the way to satisfy my hunger. It said my flight had been cancelled and to proceed to the customer service counter. As I stood in line, I watched passenger after passenger become more and more irritated, and I reflected further on Bob and how he would have handled this same situation.

They told us that the reason for the delay stemmed from the Chicago weather – NOT snow this time, but wind gusts on the balmy spring-like day that were topping 35mph. Those gusts were causing major delays in arrivals and departures. The airport had to close all but two of the small craft runways, one for arrivals and one for departures. Those closures, in turn, backed up the incoming flights which then backed up the outgoing flights.

After the cancellation of flight number two, which had been scheduled to leave at 1:30, I waited on a flight set for a 4:10 departure. At 3:30, that flight still had not left from its origin, a 30 minute flight away due to the weather in Chicago.

Want to know what happened? Did I get out? Am I back home in my bed? And what the heck happens with this whole Bob thing? Stay tuned for the further adventures of this working mom who would much rather be a SAHM.

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It's the Little Things

2008-01-16T17:24:00Z

It’s the Little Things that remind me of how absolutely fortunate I am. The Little Things show themselves in Little Ways, under the radar.

I will not say that I have fortune in the form of wealth or fame or material possessions. I have fortune in my family and those who come along on the journey of our life, and those who just happen across our path.

I have been stressing a great deal lately about the school and the way they continually perceive my son as difficult, though it is truly through their own lack of education on the subject of Asperger’s syndrome that keeps them that way and does not allow for them to see and know the SmallBoy that everyone else in the world knows. We had a meeting before the holiday break to determine if a District evaluation was needed for him and, though having a paper trail laid out might be helpful down the road of academia, neither my husband nor I believe that it’s necessary; his grades are wonderful and he’s improving in every area that Asperger’s typically hinders.

Tomorrow SmallBoy will have the aforementioned evaluation, assessing academic strengths and weaknesses, IQ, social skills, vision/hearing, etc. He is prepared to show them that he is fabulous and is doing absolutely swimmingly, and that the only thing he needs from the schools is a little bit more understanding for them to see the same boy that the rest of us see.

I’m not going to bore you with more chat about my feelings on the subject, nor any deeper background, because I’m certain you’d never make it to the bottom of the page.

I am going to tell you about the Little Things and why they show me my great fortune:

Conversation w/his therapist: “So SmallBoy, how are you feeling this week, as we approach the return to school from your break?”

“I feel great. I feel like a normal kid.”

HUGE Thing- definitely more than Little. I almost sobbed in the office as I listened to my child, who has struggled with his idea of how others, particularly his teachers, perceive him, who has done so much to try to educate others on how he really IS a normal kid, who has fought his own inner turmoil about feeling different, make this proclamation of self.

Blurb from communication notebook: “Wow! We’ve been having a great week back at school. Perhaps you should consider continuing your challenge.”

This was an “OH MY GOD” moment! We communicate with SmallBoy’s teachers each day about his behaviors, tests, homework, just the general day-to-day. Usually his notebook contains complaints like, “SmallBoy needs to always have tissues. Can you make sure that he has some on him at all times?” OR “SmallBoy REFUSED to take notes in class because he said it was boring.” (okay???????) As 2007 drew to a close, we issued him a challenge to be meltdown free until Christmas Break. We took that large goal and broke it down weekly, and then daily. He received 10 points for each day that he didn’t melt. At the end of each week he would tally them up. The number of points he had at the end of the month determined the reward. We had never set a specific “prize,” he just wanted the motivation. He succeeded and was immensely pleased with himself.

SmallBoy, my husband, and I all decided that we would ultimately continue this goal through the end of school – with a cumulative point total for June, and then again, broken down into much smaller, more achievable goals in the short term. We almost fell out of our seats when we read the note from the teacher. Apparently they finally noticed that he is a GREAT kiddo and just needs a little bit of a pat on the back every once in a while.

In conversation with a potential client at my job: “Wonderful bracelet. Do you know someone with autism?”

“Yes, my son,”

“I bet he’s wonderful.”

“Yes, he is, thank you.”

This harried looking mother walked into my office with her son, the same age as SmallBoy, to find out more information about what our program can do to help her son. Her child was clearly much farther down the spectrum than SmallBoy. As she looked at my autism awareness charm bracelet, I saw in her tired eyes, as she apologized for their late arrival, the same light and love that I have for my child; the love that you see in a parent for their child. I saw the unconditional love that she has for her child regardless of what anyone else sees in him. I saw that she, too, without even meeting SmallBoy, but just hearing that he has autism, knew that he was a wonderful child.

Those are the Little Things that keep me going. My family, people who “get it,” the strength and courage of my child, breakthrough moments with the school, those around me, and those who just walk through the crosswalk on our highway of life, We’re always going down that highway, and we’ll keep traveling no matter how steep the gas prices, despite the countless obstacles, potholes and detours, seeing the Little Things along the way that keep us from getting lost. Those Little Things are my fortune and they will never steer me wrong.

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Working on Christmas Eve??? UGH.. or is it?

2007-12-24T18:36:00Z

I found myself whining about the fact that I had to work today, until I realized that these 8 hours are the only time there will be calm in my life for the next 48 hours.

We started our “Christmas-ing” yesterday and we will carry on through January 6. It’s just these first few days of Christmas that are crazy. This morning, my children were nestled, snug in their beds, while I donned my coat, my scarf and hat on my head and trudged off to the office and PC went out to finish up the last minute, “Oh My GOD! I forgot ________,” shopping. It is a rather quiet day at the office and though I’m bored off my rocker, I’m relishing the calm and quiet.

The chaos and lack of structure of the holiday hopping (hopping from one relative on one side of the family to the next on the other side), is rough on us all, but when you throw in a child on the autism spectrum, it’s even rougher on them. SmallBoy, though we’ve only done one Christmas gathering, was having a difficult time yesterday, but only for a short while. The anticipation, practicing patience, not having a tight schedule to follow is a lot to ask, even of our fantabulous SmallBoy.

Stressing and being on the constant watch for a difficult situation on the rise, plus running around, trying to plan the kid transfer at the right time, amusing bored teenagers (no offense family, they’re teenagers, they get bored as a general rule), staying up til 2am after attending Midnight Mass to finish the gift wrapping… Wow! I’m so exhausted from writing that sentence that I can’t remember where I was going with it.

Back to work at 7:30 on Wednesday morning, though sadly too early, may very well be just what the Sanity Fairy ordered. Sure, it means getting up, exhausted from the day before, ripping my body from the snuggly warm comfort of my bed and throwing it into the cold air that is my old drafty house, but that’s no different than any other day, right? There’s coffee at the office. I may need to indulge in more than one cup, though.

Happy Holidays!

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Experience With School Districts & IEPS...?

2007-12-19T15:34:00Z

Then I need YOU! Educating people about autism and Asperger’s Syndrome is one of my goals in life. Up until this school year, I thought I had done a pretty good job. We met with SmallBoy’s teachers prior to the start of the school year, talked about different things to expect, strategies, what we can do as a whole – working together as a team. The teachers, and a few staff members, had even attended a conference on autism and Asperger’s Syndrome over the summer. We had a really great outlook on this year.

The school year started. SmallBoy was having a fantastic year. His number of meltdowns had decreased tremendously, they were much fewer and much farther between, and he had even improved at managing them himself. He had spent 4 weeks doing intensive learning therapy to help him with the sensory-cognitive skills involved in reading comprehension, and has gained tremendous self-confidence, which helped to bring up his self-esteem. He began the year as a different child.

As soon as he had his first hard time, the teachers freaked. When he had his second one, three months later, they were just at a loss. When I went in for his parent-teacher conference, I was ambushed. I am always strong and hold myself together when talking to teachers and staff about my son, but I was a bundle of mush and tears. The Mama Bear had been wounded. His main teacher told me that SmallBoy was a problem child and difficult to deal with. Thankfully another teacher, who has experience with children on the spectrum and also has experience dealing with “difficult” children after teaching at a very “rough” nearby high school, jumped in to SmallBoy’s defense pointing out that he had only had 2 major meltdowns thus far with three months between. Last school year, these were recurring – weekly, he would need to be removed from the classroom. This year, he was self-managing and doing amazing things. His therapist was praising him, his OT was praising him, everyone we know was praising him for the tremendous gains he has made. Everyone, that is, except for the teacher.

SmallBoy’s therapist went to school and observed for a bit, met with the teachers and gave them the same strategies to use that we told them to use. They did for a bit and then said they didn’t work. Well, OK…He also told them, as did we, that not everything will work ALL the time. Nope. Didn’t listen.

Now they are asking us to have him re-evaluated by the school district to see if he qualifies for services. He was evaluated initially, pre-diagnosis, between pre-school and kindergarten (he’s in 5th grade now), and all they gave him was 30minutes of speech per week for the school year to work on the /th/ sound. Alrighty…he was in kindergarten and had no teeth, of course he couldn’t say /th/.

He is working privately with an occupational therapist who, I might add, used to work for the school district, and with his psychologist (where he uses the aforementioned Wii). He is flourishing. His social skills are improving, his self-management is improving, he is doing better on tests and his grades are amazing.

Last week, SmallBoy’s OT and psychologist (Dr. Wii) met with the school staff without my husband and I present. I asked for it to be held this way hoping that perhaps the teachers would be more open when speaking, and listening. The conversation, apparently, was very productive, and we haven’t had any more issues. It was almost as if the staff listened to the therapists tell them the exact same things we told them and come up with similar plans that we did because we’re “just the parents,” and they have letters after their names signifying that they know what they’re talking about.

Tomorrow we meet with the district and the school staff to determine if he is eligible for an evaluation. I don’t think he needs one at all, but since we’re asking the school to make accommodations for us, we’re going to try to do the same for them.

Perhaps it will create a paper trail if he is denied services, but needs them down the road. Maybe they will be able to make some sort of accommodations for something – allowing him to bring squishy balls and sour gummy candy into class to stay focused. Maybe they’ll finally do an IQ test and he’ll qualify for gifted labels…who knows?

My husband and I are both dreading this meeting, though, because we know that it’s going to turn into SmallBoy bashing by his teacher and, I just don’t know if I’ll be able to keep my cool. Does anyone have any suggestions on how to do that? He really is a great kid, and when the Mama Bear Defense kicks in because someone refuses to understand my child, it really upsets me.

Perhaps I should just go into this with an open mind. Maybe the school district will find something that the teacher can do to make HER feel better about Asperger’s which will, in turn, relax her a bit more when she’s with SmallBoy and allow her to get to know him and not be afraid that he might have a meltdown.

Parents who have dealt with this before, I appeal to you for your wisdom. Any suggestions on keeping cool or, even, for how to state my case would be delightful.

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Why We Keep on Keepin' On

2007-12-18T04:03:00Z

I had one of those "Light Bulb" moments today, call it an epiphany,if you will, in the spirit of the season. Today I had a realization of why, despite all of the obstacles, we keep pushing forward for our SmallBoy - why any parent fights for their child.

After weighing the pros and cons of letting SmallBoy join the 5th grade basketball team, we decided that we'd go for it. The coaches have coached Girl in the past, and their 5th grade boys are SmallBoy's classmates, so they are extremely familiar with his Asperger's. My husband and I figured that, at the least, SmallBoy would get some social skills practice in a different setting, some hands-on OT, and perhaps, build some self-confidence while learning not to fear getting hit with the ball (like his mom!), and, at most, he might find something at which he can excel, other than video games and technology, something that might make him feel more like he can "fit in" better.

We began by attending each practice and staying there just in case the coaches might need our assistance. The first few times, yeah, our help was needed. After that, the coach asked us, point blank, how best to approach SmallBoy: treat him like everyone else on that court, or treat him special. Well - that was a no-brainer for us. We told him to treat him like any other boy out there - praise him when he deserves praise, critique him when he needs to practice or spend a little more time learning something, and make him run when the rest of the team has to run. Coach said ok, we began to spend a bit more time hanging back, delaying our arrival at practice.

We held our breath during the first few games, wondering what an "unjust" call, a steal, an injury (large or small), or a loss might bring on. As a whole, the team has only won one or two games, and that's been just fine..they're fifth graders. We prepped him on how the ref is "the law," and, even if you don't agree and all the parents and coaches are arguing and saying how unfair it is, that the ref has the final word. Period. We talked about how getting hurt in a game is just part of the game and reminded him of how much skin from knees and elbows that Girl had left on the many basketball courts in our leagues. We took the religious "WWJD" and it became WW"G"D (What Would [Girl] Do?). They lost, he got the ball stolen, missed some baskets, missed some passes, made some bad passes (all of this just like the rest of the team), but it was when he fell for the first time - and he fell hard - that my heart stopped.

No, I wasn't worried about serious injury, I was worried about the reaction that might follow. We'd not entered this realm of getting hurt at a game. He winced, sucked it up, and got right back up. EXHALE.

This weekend, the boys had a close game and a "pummeling." Both games were well played with exuberant boys, and SmallBoy cheering all the way whenever he was on the bench or even after great plays by his team mates when he was on the court. He got a rebound, an assist and a jump ball, even though possession was going the other way. He practically floated back down the court cheering, with his hands victorious over his head. Yeah, he knew we were still losing, but he was excited.

He is in his element when he's on the court. He feels like one of the guys. Sure he isn't as good at basketball as some of the boys, but he's better than some, too. He's out there with is buds.

I was so excited, when, this morning, I received an email from one of SmallBoy's coaches with a link to this video about Jason MacElwain from Rochester, NY. I'm sure you heard his story on the news back in February. He was diagnosed with high functioning autism at age 2, and was the team manager for his high school's varsity team as he didn't have the height to make the team. The last 4 minutes of the team's final home game as seniors, the coach put him in. Jason (or J-Mac), hit 20 points, 6 of 10 were three pointers. It's a truly inspirational story.

Yes, I've seen the story a thousand times, but this time, when I sat there in my office being handed tissue after tissue after tissue, I was moved moreso than usual because this came from someone who understood, someone who adores my child and has reaped the benefits of our attempts to educate everyone.

I know, now, that we're reaching people, even if it is just someone in our community: That's still one person who will, more than likely, share the story with someone else - about J-Mac and about SmallBoy - and about autism, about comraderie, about people who don't fear others who are different, nor their reactions to anything. It's about life. People are getting the message and slowly they will all get it.

Thank you Coach!

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Dear Santa: I Want a Wii for Christmas ...

2007-12-14T02:30:00Z

...and I want insurance to cover it. Anyone have any ideas?

My SmallBoy has THE world's BEST therapist. He's very cool, totally un-stuffy, is phenomenal with SmallBoy and his teachers, AND, uses the Wii in session for therapy.

They take turns playing Wii Bowling, Zelda, Mario something or other, and lots of other games I don't know anything about (because I don't have a Wii). By using this tool, they work together on several therapeutic aspects key to dealing with some of the behaviors that go along with the autism spectrum:

frustration tolerance

recovering from frustration

following directions

taking turns

coordination

switching from one activity to another

Frustration Tolerance: Have you ever observed even the most mild-mannered person become so totally involved in a video game that they get upset, angry, or, at the very least, incredibly frustrated at a video game? Children on the spectrum become all that and more when caught up in video land.

Working with the game in therapy helps SmallBoy to become very self-aware of his own body and emotional state as he escalates in any situation, real life or video life. Under the careful guidance of his therapist, he has learned to sense an impending melt-down based on his own system and how he has reacted in video land. He uses that to process what is going on before proceeding on to -

Frustration Recovery: In his sessions, SmallBoy's therapist uses the Wii and the games to bring his frustration up. As I stated before, this helps him to be aware of what his body is telling him. When he feels like SmallBoy is at melting point, or, depending on how they are working that day, just below melting point, they will stop and work on the process to get himself pulled together and grounded in himself again.

Part of learning to be independent and live with any disorder or disability is learning how to manage it without help. Self-management is not the easiest task for those on the spectrum. What SmallBoy has learned to do through the frustration recovery process has helped him in the classroom and in life, in general, to bring himself "around," to chill out, to catch himself before the melt gets to the point of no return.

Following Directions: Oral or written, direction following is incredibly difficult for children who have a difficult time processing. Multi-step directions are the equivalent of scaling Mt. Everest with no gear. Now, I will grant that many video games, Wii and otherwise, have very simple games that don't involve lots of reading or following directions. There are some, though, that do involve reading and then comprehending the directions in order to achieve each goal, with the end result of conquering the game.

Difficulty with reading comprehension often accompanies spectrum disorders. For kids who are aware of this difficulty, skimming the directions and listening or looking for only key words can lead to disappointment in the outcome of the game (bringing on more frustration). In several of the Wii games, though, it is important to get all of the directions - to understand how to use the controller in relation to the body and the object of the game, what steps are required to complete the next level, etc.

I've been completely amazed by how much this has not only helped with SmallBoy's comprehension (in addition to some intensive learning therapy over the summer), but helped him with things in daily life. His level of comprehension, not to mention self-confidence, has shot through the roof. I will not credit simply the use of the Wii for this, but I give complete credit to SmallBoy's therapist for knowing how to utilize this to help my son.

Taking Turns: Most children experience problems taking turns. The autism spectrum is a common place to find issues with turn taking, as many children cannot process the concept involved, “Ok, I’m done now. It’s your turn to play. I’ll play again when you’re done.” This is a common concept worked on in behavioral therapy for many children, so why not bring in something that kids LOVE to do to help teach them how to take turns. Gee, what better way than the hottest new video game on the market?!?!

SmallBoy and his therapist play both games where they have to take individual turns, and games where they compete as a team. Learning this concept teaches how to be a winner, how to lose, how to STOP, how to let someone else go and accept what happens in their turn…wow, things that are applicable to life situations that they will encounter in the real world.

Coordination: The Wii is now being used in senior citizen communities to get the residents up and moving, it’s being heralded as a work out. This is a very physical game; a friend of ours broke her living room chandelier playing Wii Tennis (or was it baseball?). In order to play some of the sport games, the player must go through the actual motions of the game: swinging a bat, winging a bowling ball, swinging a bat or a golf club.

Many children on the spectrum have motor issues – gross and fine. Hmmm….can you see where I’m going with this?

Switching From One Activity to Another: There’s no knocking how much talk is out there about children doing nothing other than playing video games for hours on end. Some children on the spectrum have perseverations with video games, others with dinosaurs, space, 4 different colored silly-looking guys who play with a sunshine baby, movies, comics. Attempting to get them to move on to something else can occasionally be as much fun as ripping your teeth out a la Tom Hanks in Castaway.

SmallBoy’s therapist takes the intensity with the Wii games and teaches him how to stop playing, even at very key moments in the game, such as mid-battle, in order to move on to another exercise. This is helping him to build his transition skills so that changing from activity to activity in class, a disruption in the school routine for an assembly or mass, or even a change in the plans at home doesn’t seem so overwhelming.

There are so many other things that I’ve seen changed and improved since he’s begun working with this therapist. I love his methods and, I might add, love his relationship with my son.

My children, combined, have multiple video game systems and I really and truly do not want another one – especially one that I know I will find myself drawn into. When I look at the big picture, however, I can see the improvements in SmallBoy. I can see what impact the skills he learns from playing this system have on his life.

Santa, Dear, won’t you please bring me a Wii? I can’t seem to find one anywhere. If you can locate one, can you include instructions on how to get insurance to cover it as a therapy tool? I’ve been a good girl this year and I promise to be good all year next year.

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THIS is Why I Don't Cook

2007-12-11T01:31:00Z

Every once in a while, I have to cook. My children conveniently make plans to be elsewhere.

That should say it all. There should be no further need to explain with a posting, right? Oh NO NO NO NO!

When I was a single mom, we at a lot of Hamburger Helper, one form of pasta with red sauce or garlic & butter, or another, hot dogs, mac-n-cheese, take out - you know, easy stuff. When I married PC, however, he took over the cooking because, well, he's much better at it than I, and, frankly, he enjoys it. He has increased our overly bland palettes and taught us not to pick the "icky things" out of our food.

Tonight was an exceptionally busy night for us. SmallBoy had basketball practice, Girl had softball practice, and there was grocery shopping to be done in advance of the looming ice storm. PC does a large amount of the housework, as we work opposite schedules on most days. Tonight, we split the chores. My choices were grocery shopping or making dinner (Oh WOE is ME!). I despise grocery shopping, and, PC is a much better (read efficient and cost-conscious) shopper than I. Dinner was just a mish-mosh of chicken & rice, something I would make in my previous life. After weighing the options carefully (as he was ~~shoving me out of~~ encouraging me to make a decision to either stay in the car and shop or get out and begin dinner), I chose the latter.

Without doing more in the area of changing from Working Mom to After Work Mom than taking off my killer boots and hanging up my coat, I threw the partially defrosted chicken in the microwave, guessed at the weight, hit start and walked away. I was on task, though. I found the baking dish, sprayed it with cooking spray, and started the oven. I found the seasonings that I wanted and waited for the "beep beep beep" of the microwave to indicate it was time to check the progress of the defrosting poultry. At about 7.5 minutes in, it dawned on me that I'd heard nothing, and I bolted in to try and stop the process before the microwave defrosting pre-cook began. I was not successful. I did, however manage to yank the meat, throw it in the dish, season it a little and pop it in the oven (doesn't that sound just SO Donna Reed? I just "popped it in the oven.").

Chicken defrosted and in the oven! Mission accomplished. Time to relax and chat with the kids about their days. A few minutes passed and the thought of the chicken passed through my head. Yeah, passed straight through without stopping at "Go" and collecting $200. At some point, though I did realize that perhaps it would be a good idea to start the rice, because, boy, wouldn't that be awful if the chicken was done and I hadn't even started the rice. EEK. Rice started. Chicken progress checked. PLENTY of time.

LargeBoy came into the kitchen and, as most hungry 17 year old boys do, asked when it would be dinner time. I had no clue.

"Mom - what do you mean?"

"Well, I just started the water for the rice and the chicken's not ready yet."

"So, half hour? 45 minutes?"

As he questioned me further, I picked up the phone, feeling shameful, not because of any notions of women knowing how to cook or being better in the kitchen than men, but because I JUST can't cook, and called my husband.

"Mom! You're kidding, right? You're calling PC to find out how long dinner is going to be based on where dinner is in the cooking process?"

"Well, yes."

Thankfully, my husband was just pulling up to the house when I called. HOORAY! My knight in shining armor! My Prince Charming (hence the "PC") come to save me from the evil overlord, Sir Supper. I could relax.

He checked on the progress of dinner and told me to go ahead and add the rice to the water. I did. I put it in. I stirred. I covered. I walked away.

Now, I know you're all out there shaking your heads. THIS was the result:

Yup. Burnt the rice. Thankfully, this was taken when someone else burnt the rice and 'fessed up, but this is pretty much what my pan looked like.

I can bake. Oh YES, I can bake! Pies, cookies, cakes - anything that is baking, but so NOT cooking!

The family reached the conclusion tonight after salvaging what we did (which was most), that when I cook and not my husband, they will make sure to not be hungry or to eat at a friend's house.

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Come Children, Sing!

2007-12-10T03:13:00Z

Looking for that perfect gift for someone who seems to have no time to go out with their darling wee one because they're chained to the house, the weather's too terrible, because there are guests coming for the holidays, because there just are NOT enough hours in the day? I recently received an email from Mary Ellen Pinzino, the Director of the Come Children, Sing Institute, which is offering online music classes for infants, babies, toddlers, and children with special needs. This will help to provide quality parent-child time AND music learning these delightful children, while in your own home, which, in this delightful Chicago weather is a HUGE bonus.

Below is the information about the program and all of the contact information. I encourage everyone with a child to contact the Come Children, Sing Institute for further information and gift certificates for their classes.

Come Children, Sing! Launches Online Music Classes for Infants, Babies and Toddlers

The Come Children Sing Institute announces the debut of Come Children, Sing! Online Music Classes for infants, babies and toddlers. Parents can now engage with their little ones in music classes online, in their own homes and on their own schedules, whatever their musical background. MP3 files, music activities, and parent tips are all provided online, with tailored blogs and podcasts to inform parents about their child’s music development. Parents can further make Come Children, Sing! portable with an iPod or CD.

Come Children, Sing! is a developmental music program that makes learning music as natural as learning language. Babies across the country are thriving musically on Come Children, Sing!, surprising parents with their focused attention to rhythm and tonal activities, play songs and art songs written for the young child’s music development. Parents are discovering the power of Come Children, Sing! with their little ones and the joy of making music part of everyday life. Many find the music development activities helpful in filling the long days with their little ones and in comforting a fussy baby. Stay-at-home moms, stay-at-home dads, working moms, and working dads all appreciate the convenience of computer “laptop activities” that provide for quality time with their young children. Parents are learning to parent music, tailoring activities to meet their family’s lifestyle and their child’s temperament. Gone are the days of having to cart baby, diaper bag, stroller, and toddler to a live class in inclement weather, during naptime, fussy times, or on weekends, or miss classes for illness or travel. Distance learning has now reached the youngest of children, with all the benefits of online education.

Mary Ellen Pinzino, founder/director of the Come Children Sing Institute, says, “Come Children, Sing! engages parent and child together in the wonder of the young child’s music development, nurturing parent-child interaction as well as music learning. It guides parents in the process of their child’s music learning during the most important time in life for music development.”

Come Children, Sing! is based on more than twenty years of research at the Come Children Sing Institute, a center for research and development in music learning. The online program has been in development with children for over two years. The Come Children Sing Institute pioneered live music classes for little children and parents more than twenty years ago, and is now leveraging technology to reach many more children in the home environment, guiding and celebrating the young child’s music development and coaching parents in the process. Each Come Children, Sing! Online Music Class offers one new lesson each week for ten weeks, with successive classes providing for music instruction throughout early childhood. Gift certificates to Come Children, Sing! offer educational gifts for new babies, holidays, birthdays, and baby showers, without the risk of lead paint or videos for babies.

For further information and to view free sample lessons of Come Children, Sing! Online Music Classes for infants, babies and toddlers, go to www.comechildrensing.com

Contact: Mary Ellen Pinzino, Director, Come Children Sing Institute

Come Children Sing Institute
P.O. Box 1202
Homewood, IL 60430
Tel: 708/957-SING!
Fax: 708/957-7464

www.comechildrensing.com

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I Need YOUR Input

2007-11-30T00:52:00Z

Parents with special needs children: YOU need to read this. I need your input to help other parents just like us. I lost this post in the crash of Chicago Parent, but had posted a hardcopy in my son’s OT office. Please take a moment to read and, please, feel free to respond to the email listed here or in a comment on the article.

Repost from 10/22/07

As the mother of a child on the autistic spectrum, I’ve often wondered how everyone else does it. Does every family with a child on the spectrum, or with any other special needs get frustrated? Find moments of joy in the smallest of triumphs? Feel the need to just break down and cry, if for nothing more than a moment of allowing yourself to be vulnerable? Feel the need to escape every once in a while? Do anyone else’s ears perk up, even in the most crowded locale at the sound of someone else, clear across the room, talking about their child, with the same issues as yours? How about moments of guilt, anger, sadness: at yourself, others, teachers, school districts, strangers, family members, those who just don’t get it, government for not helping out more? Do you find yourself getting teary-eyed when you read a little blurb about a child with issues similar to your child’s doing something wonderful – sharing in that parent’s joy? Do you get angry when your child’s teachers just won’t listen and continue to label your child as a behavioral problem when, in fact, they simply do not know how to interact? How do YOU balance the myriad of places, finances, jobs, therapists that are necessary, and all of the time spent dedicated only to your child’s well-being?

What about faith? Does that play a part in how you get through? How about humor? What about the rest of your family?

What do you do to relax & release?

How many times have you sat at the various therapies (as I am now), IEP’s team meetings, interventions, doctor visits, and looked at the other parents there and wondered what exactly it is that they do to keep it together? That is exactly how these questions came to me: as my husband and I sat in the lobby waiting for our son, SmallBoy, as he worked with his OT (as we’re doing now). I see parents all day at my job- some have kids with seer learning disabilities, autism, ADHD. I see parents at our son’s behavioral therapist and occupational therapist and I wonder, “Hmmmm – what is it that THEY do? I know they could tell me volumes about their child and educate me inside out on their child’s disabilities/issues, but what do THEY do for themselves?”

There are so many stories of what our children are like, how delightful they are and the joy they bring to our lives. There are happy stores, and some that are so sad, others that bring hope in the wake of tragedy. I am in the process of researching how we, the parents and family members of these precious angels, get through the day to day. I am focused on US as well, because it’s so important that WE can keep it together when we need to, that we, too, have to “let it all out” from time to time. My hope is to write an article about US that will, perhaps, help other parents like us and, ultimately, help educate those who have just heard the words, “Your child has _______.”

If you are interested in sharing your story with me, please email me at tinanmike@sbcglobal.net, and use “How WE do it,” in your subject line. No need to send me your whole story right away, I’d love to converse with you prior.

As a side note, after sending this same request to my family, my mother-in-law wrote back about an experience she had wile vacationing in Mexico:

“Hi Teen…When I was in Mexico…I was sitting around the pool…and I was mentioning my worry about getting [SmallBoy] mini bongo drums…because noise might be irritating…but I wanted him to feel part of the very musical family….She (a total stranger) slid up on her float and said…,’Why would sound be irritating?’

“…and I said, ‘My grandson has Asperger’s.’
“…and she said, ‘I have a grandson with AS.’

“Then another lady floated up and said, ‘My nephew has AS.’

“Anyway…the fact that I said…’[SmallBoy] has AS,’others came around and bonded with me. I think they liked that I just talked about it.

“My point is, of course, …we come together as a group of people in our caring…and our knowledge of AS…we realize…it is all around us, and we better do something about it now…but that they are the dearest children on earth….”

My husband and I TRY to have a date night where we go out, even if only for an hour, grab a beer and let our frustrations out playing Ms. Pac Man. We pour our emotions into our music, but sometimes that’s just not enough. It’s hard sometimes to keep it all “aside” until you’re out to vent. What do YOU do?

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