GBE2: Simplicity

There are times when I come to sit in this Cave, worn and battle-weary, and all I can muster is to stare shell-shocked at the blank screen of this computer. Although it is quiet in here, my ears ring from the screaming chaos that comes along with special needs. This morning is one of those times.

Our week of February Break is over in New York State. Dear gracious, it about kills me every time. Am I the only mother who can't stand the thought of watching her children? No. I know that I'm not. I know that other special needs parents feel the same dread. And, please, don't think that I don't love my children.

Simplicity.

I sit here today thinking of the topic given to me by my blogging group, and I'm called to the blissful days of pregnancy, before special needs, when the most I considered in life was stocking my shelves with onesies, diapers and crib toys.

In the blink of an eye, onesies were replaced with compression braces and adaptive equipment. Years of doctors, behavioral therapies, medication and surgeries have gone by in a blur. A decade into parenting, the diapers and crib toys are still here.

This one is a favorite.

Simplicity is a life gone by.

"Do you ever resent typical families?" was a question I received from a fellow special needs mom at the start of this break. She had just returned from the hospital with her child. "Our kids seem to face so much in life."

It's true. Our kids do battle life daily, and in the heat of that moment, I don't begrudge that mom the fleeting thought. But, gosh, as a general practice, resentment is not a healthy road to travel. Besides, I'm pretty sure that even if our children were born typically developing, I would still have found something to complain about.

Life is all about perspective.

I'll be honest, sometimes, we special needs moms take an (unfair) jab at the expense of typical moms. After a monster meltdown, seizure, bout of public incontinence or when facing surgery, it isn't uncommon to hear, "Oh, but I'm sure teething is terribly difficult, too."

Frankly, teething is no fun. This is all just a little (still unfair) venting. Typical parenting is not all easy and special needs parenting is not drudgery all the time.

Did I really just admit that? ;)

And, while simplicity might be something we've all left behind as we say goodbye to our single years and forever enter the realm of parenting, there still is nothing quite like the complex and chaotic ferver of life with special needs.

In my house, that chaos takes on a life of its own. My challenge has been to find my own sliver of peace within the chaos.

Oh, gosh, no!

Ew.

Come to Mamamommy!


Thank you Family and Friends.

Thank you Mom Cave.

Thank you February Break for coming to an end. May my fellow special needs parents in New York all be resting.

Windows

I don't remember the exact age our older son started playing with windows, but I know it was before he entered preschool.

It sure didn't take a long time living with this child before I realized that all of the inventors behind the babyproofing devices at the baby supply stores were mere novices. I was positive I could hire out his services. He could beat any child safety lock, and that included window locks.

I can still see his face practically mocking us as we installed our first lock.

I ran a search for the item and can't even find an image for it. If it is no longer in production, perhaps it is for the best. Mounted flush with the window sill, it also had an arm that attached to the lower window. In the middle of the device was a button which regulated how far apart the arm could move from its base. Unfortunately, clearly printed on that button were "locked" and "unlocked" icons.

I know our son was young, but he was no dummy. He knew what these pictures meant, and so unlocking this "child safety lock" proved to be a no-brainer.


Has anyone ever tried this one?

Yeah, that flap breaks off...

I still have a pack of these. It reads, "Slide enables disengagement for periods of non use."

BWAHAHAHAHAHAAAAAA! Foiled before even getting out of the starting gate!

Oh, a lot of this was a game to our son. We entertained him. But, he was also getting the message that we didn't want him to play in the windows. Exactly why we didn't want this, I'm sure he didn't know. He had no danger awareness at the time. So, after showing us that that we were fools to think we could lock him away from his window play, he would back off...for a while.

Window play always returned.

At one point, my husband simply hammered a few nails into the window frames. It was around that time that our son learned how to use the back of a hammer to remove nails from things---most notably from window frames.

LOL! I love that kid!

Yes, we absolutely care about his safety, and we DID get a security system hard-wired into the house. We were waiting for the day that he learned to crack its code--because that WILL happen-- but I don't think that he's too worried about the code.

For, each window is activated by a tiny little box that sits atop of the window sill and tucked away to the side. The one teensy, eensy problem, is that this box, the integral part to the entire alarm system, is stuck to the window sill with a simple 3M adhesive.

Sorry, 3M, your product, while wonderful, will not stop a determined boy who wants to play in windows.

Hardware locks/keyed lock/things not meant to be locks but worked in a moment of crisis. We've tried just about everything. This child is just GOOD.

Not too long ago, most of the second-floor windows were shut permanently with screws that my husband drilled into the frames in a moment of fear and disgust. Yet, as with the hammer, this child suddenly grew an interest in screwdrivers. I'll take some of the blame for this. I didn't tumble to the reason for the interest. I even agreed when school asked if they could provide opportunities for him to take things apart with a screwdriver...

...you know, to HONE THE SKILL.

Not long after that, I was in my kitchen. It was the middle of the afternoon, and the boys were seemingly occupied. Our younger son was chatting away to me, and I had the video monitor on our older son. I could hear his babbling.

But, something wasn't right. That babbling, it wasn't coming through the monitor. I walked into the room adjacent to the kitchen and did a quick robo-sweep of that side of the house with my mommy senses ( parents, you know what I mean by this!). He wasn't there. But, truly, his voice was close---closer than it would be if he were upstairs and the sound was coming to me through a monitor.

I don't know what made me do it, but something told me to turn around and take a step toward the kitchen door. Just look outside, the voice inside my head suggested.

When I did, I discovered with horror that our son had unscrewed the screws securing a second story window. He managed to open that window and also the old fashioned storm windows behind it. There he was, leaning waaaaayyyyy out of the window from his waist, ever-so-casually, peeling the paint off of the siding to our home.

Stop.

I can't go on with this story another moment. Anything any of you are thinking as you read this, believe me, I thought it as well. He's okay, and once I secured that fact, I didn't know if I should hug him or spank him.

One thing I learned that day:

One thing I felt that day:

One final thought on the future of windows in this house:

GBE2: Do-Over

Well, what do you know? This morning I actually fit into those pants that were too tight for me a couple months ago! What a relief!!

But, please and thank you, no congratulations are warranted. I don't even want to discuss the amount weight I put on in the past year. Let's just quietly aknowledge and move on. It bothered me, but I didn't know what to do about it.

It was so disheartening. Each day as I got dressed, I lowered my daily standards from what looked cute to what hid the most. And, I started to question if this was what I could expect from life.

Gasp! Was this what I could expect from being middle aged??!!

This time last year, I was in my skinny jeans, and within a few short months from that point I really didn't know if wearing them would ever again be a realistic expectation for me. Thankfully, the tides have turned.

"I have no idea how I got off track," I said to my husband the other night, "or why it was so hard for me to get back ON track."


He looked at me as though I'd lost my marbles. So he helped me take stock of the past year:

-Pull younger son out of an ill-fitting educational environment.

-Homeschool him for the remainder of the school year.

-Arrange private psychological and developmental evaluations on said son.

-Receive his autism diagnosis as well as four other developmental diagnoses.

-Try not to go insane with constant barrage of chat chat from chatty child
absolutely all day long.

-Research placements for younger son for following school year.

-Negotiate an IEP for our younger son for the following school year.

-Med trials. Yuck.

-Introduce 100 ladybugs to our household to teach our kids about lifecycles and
then realize that lifecycles include sex--lots and lots of sex.

-Meet increased anxiety of older son by driving him in car 4-6 hours straight
every night for an uncomfortably long stretch this summer.

-Learn that, somehow, our family dog has become the Boogie Monster and must be
out of the house/away from older son at all times. Poor pooch.

-Negotiate IEP for older son for the following school year.

-Introduce three bullfrog tadpoles to our household to teach our kids about
lifecycles and learn that young frogs eat one another.

-Hold younger son's hands as he battles depression and anxiety attacks after
Christmas break, sometimes not able to face the day at school.

-So...that last bullfrog in the tank. Is it dead? Or, hybernating? Dead?
Hybernating? Or...dead?

Aside from those things, it has been our usual bed wetting, dirt eating, marker licking, non-stop screaming/talking/night waking life. Huh. I guess I was so busy working with my nose to the floor that I didn't take a step back to breathe.

Life is just busy. And, please, let's not even enterain the idea of a "do-over". NO THANK YOU! Knowing this family, if we were given the past year to do over again, we'd probably do it over in a more hectic fashion than we already have. I'd say if a few extra pounds is all I have to show for surviving the hurdles placed before me this past year, then I am doing quite well!

After all, life can be a lot harder. My children could have terminal illness. We could be homeless. My marriage could be in shambles. I can live with the level of mental disorders that are in our lives. There are countless scenarios other than mine that could be much worse than the crazy little life we have going on in our crazy little house.

Life, dear friends, is all about perspective.

No need for do-overs. Let's just keep on doing.

GBE2 Challenge: Upset

I'll tell you one thing that just does not sit well with me, and that is when our older son is upset.

I'm definitely not playing favorites. I don't like our younger son to be upset, either. But, when he is, I am at least able to have some form of conversation with Little Brother--even if it is very basic. With that child, I know, somehow, I can work my mommy magic and usually make things ok in the end.

Mommy magic doesn't always work on our older son.

In fact, mommy magic was sketchy at best from the very start. In the newborn days, I did everything I was "supposed" to do: I fed. I burped. I swaddled. I rocked. I held him close. I put my skin to his, cheek to cheek, so that he would learn the feel of his mama and be comforted by me.

What I didn't know what that everything I fed him was upsetting a gastric system that was intolerant of what was going into it. When my fingers patted his back in an effort to burp him, his disregulated sensory system felt pain with my touch. When I swaddled him, he felt trapped instead of comforted. Instead of feeling soothed by rocking, he felt sick. He didn't want to be close to me. People scared him. Touch hurt him.

Everything I was "supposed" to do was wrong. Everything I did upset this child.

It took me years to understand why he didn't trust the world. It took me years to understand him. Even after his autism diagnosis at two years old, we didn't fully understand that just about everything in his world offended him, this child who could not even tolerate more than two adults in the room with him at a time.

Sights, sounds, touch. His food. Our demands. The unpredictable. These are the things in life that upset my spectrum child. They propelled him to walk at an early age, and, before we knew it, he was running--running in full blown flight mode away from life.

"He's spirited," we were told as I dashed in and out of rooms after our bolting child.

"That boy is a genius! His brain never quits," others would say as I attempted to quiet our proverbial bull in the china shop.

"The most active children lead to the most productive adults," still more would explain while they all sat politely with their polite little babies, and I was a sweaty exhausted mess running after our Energizer Bunny.

How I wish I had known that his over-activity was actually anxiety, a cry for help when he had no language to tell me otherwise.

Oh, he tried to tell me. He cried. He cried and he cried and he cried. The child was simply never happy. Ever. There was no language. No pointing. No level of engagement to explain the crying. There was simply CRYING.

A newborn crying...

...turned into a young baby crying...

...who then became a toddler crying...

...who grew into a crying preschooler.

Showing that he was "upset" seemed to be his best form of communication, and that fact tied my stomach up in knots. For, as our nonverbal infant grew, his cries became less about his sensory pain or his gastric pain and more about the emotional pain of a grade schooler unable to express his feelings.

I simply had no idea. My mommy magic was completely defunct.

"It gets easier," I was told by more experienced moms. "Give him a chance to grow."

But I was not convinced: not our kid. Known for being one of the more challenging cases in our area, he just didn't seem to develop the way anyone had told us he would. I didn't hold my breath.

Instead, I just aimed my nose to the floor and trudged forward. Challenge after challenge, crisis after crisis, we chipped away at whatever obtacle lie before us. And, if I stop to think about it, I suspect that is what he had been doing all along.

Life works so much better when you feel as though you are part of a team.

Today, he is ten years old, and, yes, it is a bit easier. Time has afforded us both maturity and skill. But, even still, his desires have developed well beyond his language, and sometimes, he bursts into a mournful cry over something we both know I will not be able to understand right now.

Oh, how I hope for greater things in his future!

Anxiety

Blog? What blog? Who here has a blog?

Lol. Oh, yeah. I guess I do! And, I haven't written here nearly as much as I have in months past. For the most part, trust me, I'm doing you all a favor. My thoughts aren't all that coherent.

Anxiety is ruling this household. If I'm not managing symptoms of it in one son, it's pouring out of another. Both seem to come unglued when they get home from school--what a bewitching hour that has become!

Retreating from the world, one son burroughs his head inside his hoodie as he plants his nose into his iPad and watches various Dirt Devil vacuums on YouTube.

"Walk, please," he says. "I want DOWNSTAIRS," he commands to me. Translation: get away from me mom. I want to be left alone. So, I leave him alone.

If only Alone Time was enough. It never is. By early evening, he is pacing fervently and vacuuming with his own collection of vacuums like a mad man, refusing food, demanding that his dad arrive from work and take him to the mall for a carousel ride--or six or seven.

His nervous energy is tangible. He paces and paces and paces. He is uncomfortable in his own skin. And, that energy spills into the nighttime hours, when he walks the floor of his bedroom, playing with toys, looking for something he's lost--doing anything but sleeping.

Does your spectrum child have trouble sleeping at night? Consider anxiety as a possible source.

Our younger son's anxiety about his school day mounts as the evening develops. By the time he is in the tub at the end of the day, he is usually in tears about what has happened during the day at school and what MIGHT happen during the next day at school. Then, he decides that his sleep is going to be terrible, and he considers all of the reasons WHY his sleep is going to be terrible. He'll toss and he'll turn, falling asleep very late and sometimes not staying asleep.

Getting this child to school the next day is not an easy task. I don't blame him. I remember thinking school lasted an unforgiving amount of time when I was his age.

How do you survive two anxiety-ridden children? Beats me! Lol. I know that blogging hasn't factored into my crisis plan. :) However, I have had to strip down to a few basics to make life more manageable.

1. Ditch the bad habits. Late night TV? Staying up too late? Late snacking or cocktail or anything that leads to disrupted sleep? FORGET IT! And, if that's a little hard to take, then consider it temporary. But, listen my friends, where is the logic in depriving yourself of what sleep you can get when you know that your children are also going to deprive you of sleep in a few more hours? Put down that remote and GO TO BED!

2. Relax your standards. I'm going back to the newborn days. I'm cleaning only the basics. I'm cooking only the basics. I'm not taking on any more projects than I need. At any given moment, life with kids is about to explode and deplete what energy I have. Again, I see no logic in depleting my reserves on non-pressing matters such as cleaning the hall closet.

Oh, and THIS time, when my husband has sworn off my home cooking for the big-bag-of-salad-diet? Well, I'm going to take him at his word. It's a win-win situation, right?

In no way am I insinuating that this is my husband.

3. Don't let it get you down. This, too, shall pass. No stage along the road of special needs is permanent. Find some way to brighten your days until the storm has lifted.

I'm going to take my own advice right now. It's been far too long since I've popped on a pair of my Mom Cave Shoes. I'm missing my blog and my Mojo! Just thinking about them is putting a spring back into my fingertips!

Signing off for now and heading upstairs to grab my best Sex and the City shoes! Perhaps I shall meet the bus wearing them!

Monitors

My last blog got me thinking of all of the failed products we have used in this house to try to contain the activities of our older son, our bundle of energy, that boy with the brain that just won't quit.

Audio monitors did not last long in this house. This kid meant business, and we needed more sophisticated equipment! And, that's just the kind of situation that my adorable geek of a spouse loves. He quickly purchased a camera with a hard-wire system that was installed in our attic and dropped down into our munchin's room, ultimately mounted on the wall above his crib.

This isn't the actual camera, but you get the idea...


The plan was that our little sprite's every move was then going to be caught on a tv montior that said spouse had rigged up in our bedroom, a.k.a., Spy Central. In short, that kid was toast. No more catching us off guard. No more feces smearing. No more pealing the wallpaper and eating it. NO MORE!

Also not the monitor, but it looked very similar...


Did I mention that our son started walking at ten months of age?

"No more" lasted about three months before it began its descent into demise. I remember our child toddling into our room and looking at that television screen, seeing the layout of his bedroom before him, and then looking at me as though he'd just outted an undercover agent.

Into his room he went. He walked in circles. Into our room he went. He studied the screen. Into his room. Circles. Until...AHA! He spotted the camera! He then walked into our bedroom and turned off the tv. Lol.

Turning it off turned into unplugging, which turned into disconnecting. You see, disabling the monitor was all he could do since he couldn't reach the camera. What a pain! I got tired of the cat and mouse routine, and, besides, I needed a monitor to travel with me, so I convinced my spouse that his technology was dated--the ultimate insult to a geek. We dumped that system and purchased a portable video monitor.

Look how tiny and portable this one is! I positioned the camera just so that I could see our son's bed in the screen. :) This monitor gave me warm fuzzies...

...until our son walked by and snapped off the antenna.

Not to worry. Husband is a geek, remember? He rigged up some sort of some eye sore thing that made it functional---frustrating, yet functional. We were back in business for a few more months.

You know, the trouble with portable monitors, is that they are, well, portable. Our son started hiding it.

And then, one day, he walked purposefully into the room and stared it down. He studied its picture with intent. Then, with that same intent he marched out of the kitchen and back to his bedroom. He looked at the camera. I watched it all on the monitor like a B-rated movie. His brow furrowed. His eyes squinted.

Then, he left his room and came back to the monitor and studied it again. The next day, when he woke, instead of playing in his toddler bed as he usually did, he deftly moved onto the floor beside his bed, which just so happened to be outside of the camera angle.

From that moment on, our lovely portable video monitor with the broken antenna only caught our darling when he was asleep.

This is the face of the little boy that now has TWO cameras in his bedroom working two DIFFERENT angles in the event that he should be holding a part to the toilet or a tv or something else he shouldn't be dismantling.

And, frankly, we need a camera in EVERY room in our small upstairs to really keep up with him, but that's simply too much for the world of baby monitors to withstand.

I tried audio monitors in the other rooms.

He unplugs them.

Maybe I should somehow rig him with a spy pen...on his vaccuum. Now THERE'S an idea!! Just you wait, my little man. Mommy has not yet made her last move!

GBE2 Challenge: A Product Review

We affectionately call our older son "Houdini" because he is a master escape artist. He thinks like an engineer, and from an early age, he could find design faults in just about any product we put in place to try to tame his activity level.

It would be funny if it didn't get in the way of my parenting him.

For example, I recall the time he realized that he could beat all of the child seatbelt locks provided on the shelves at our local baby supply stores. That skill took us off guard. One day, life in the van was calm. The next day, he was roaming free, often stripping his clothes until he was naked. Why? I suppose because he learned that he could.

"YOU GET BACK IN YOUR SEAT NOW OR YOU WILL GO DIRECTLY TO YOUR ROOM WHEN WE GET HOME MISTER!" We would threaten.

Pssshhh. Yeah. Like that worked.

I can still see his face staring back at me in the rearview mirror with a huge, taunting smile. This habit was an annoyance. We'd have to pull to the side of the road. Dress him. Rebuckle. Start again. It could more than double the length of time for our trips.

But, then came the day when he realized he could jump from his seat in order to exercise his opinion about where we were going---by grabbing the steering wheel. And, what about the day that he very slyly flipped the switch on his door to de-activate the child safety lock as he hopped into the van. That little maneuver allowed him to open his door from the inside any time he wanted--which was when he unbuckled his seatbelt while the van was still moving.

That made the game change very quickly. We realized that we had to somehow restrain him until he learned to sit quietly. My husband's belt cinched around his waist and bucked in the back of the seat?

Nah. He could slide right under it and onto the floor.

Cabinet locks on the buckel? Not bad, but it only slowed him down.

Once he worked on his fine motor skills, he had that down.


One day, EUREKA! We found it! The EZ-on Vest. A restraint system for cars, handy for children who roamed in vehicles and also for children with low muscle tone who needed support while being transported. We were so excited to put it on him! He sat back in his seat and eyed it critically. There were so many parts to it, I handed it over to my husband so that he could put his engineer skills to work. It took us thirty minutes to get it on him. And, it took him less than one to slip out of it. He found the one flaw in the design as soon as we hooked him in place.

The EZ-On Vest: Easy-Off. No-so-easy-on.


By this point, he was smart to our desire to restrain him, but he was also smart to the fact that we were losing the battle. We started turning the car around and bringing him home any time he got out of his seat. It angered him, but not enough to stop frollicing around the van.

My last-ditch effort was a safety harness system created by a dedicated designer who even used a padlock system for clever escapees.

Forget it. Too many clasps. Too hard to get onto the child without a struggle. Bottom line, this wasn't happening without WWIII.

I was at the end of my rope. I even began WWIII. But, then I saw how much our son did NOT want to be restrained. Some children accept it willingly. Some children need it due to muscle tone issues. In our case, restraining him was restricting his liberty, and he was fighting with all of his might to keep it. I understood his raw desire. As his mother, I felt compelled to respect it.


However, this child also needed to understand that we couldn't take him in the car if he was a safety risk. There was no good answer. For a long time, we restricted our activity. I didn't leave the house with him--and certainly not with both boys-- for fear that I was putting us all at risk.

Thank goodness for time and maturity. Today, he no longer dances around the van naked. I guess he decided it was no longer fun.

If only we could find something to keep him from opening the windows that doesn't involve plexiglass...