Initiative: Raising A Son With Special Needs

Willie called me last night. I couldn't understand why I was giggling during the phone call. I felt all warm inside after we hung up, also not knowing exactly why. With a good night of sleep, I have figured it out. Willie asked to call me, as Tuesday is not his regular call home night, because he wanted something!

What? You are thinking, you are giddy and euphoric because your 21 year old son, who attends a Residential School, called to ask you something? Well let me paint the whole picture...

Willie lacks initiative. Sure, he can and does make his needs and desires known. I want that cookie. I do not want that shower. I want to stay up later. These are basic needs/wants. And asking for toys, books, costumes and guitars are easy too for Willie...sometimes a little too easy.  However, I am grateful he can make these desires known. But something like a phone call home is out of his realm of asking. Sure, Willie could call home every night if he wanted, but he would have to ask.  For someone who is so sophisticated verbally, it is baffling that the simple act of asking to call home is non-existent. We have spent many years trying to teach Willie certain types of initiation skills, a complicated task. But last night Willie initiated successfully!

The conversation part of the call was just as awesome. Willie was in a fabulous mood. His voice was playful but very direct, as he had a purpose. He wanted me to send him his Gameboy DS and two games. Not just any Gameboy and not just any games. Very particular ones with quite detailed descriptions of which of many Gameboys and games I was to send. By then I was just plain laughing which caused Willie to repeat his requests. His voice was proud and strong, asking for something that would make him happy. Initiating our dialogue in a polite appropriate, skillful manner. My happiness made him happy. And our conversation remained upbeat throughout the rest of the phone call. A rare occurrence.

A joyful one indeed. Go Willie!

A Tricky Job Indeed: Raising A Son With Special Needs

Willie does best with a regular, steady, predictable routine. Same time everyday to wake, eat, go to school, work, eat, and go to sleep. He is not alone as most kiddos with Special Needs thrive and require this routine.

But Willie craves to go out to dinner, to go on adventures, to join us on our family vacations. After 21 years of parenting him, I am still torn as the shrapnel of such experiences tears my heart apart. But as parents, we must allow him to venture out of his sameness, his routine, his predictability. It is our job to prepare him for the triggers that may just set him over the edge. It is our job to absorb the fallout of his lost emotional control. It is our job to take his hand and lead him through this scary yet exciting path of adventure. It is quite a tricky role to fulfill: parenting the Special Needs kiddo/adult.

On our most recent family vacation, Willie embraced all the dinners out, all the shopping trips, all the wilderness jaunts, but of course had his dark moments as well.  He suffered from the "after-remorse" that accompanies each temper tantrum. He is emotionally intelligent enough to know he has acted like a jerk. He feels guilty for all the names spoken, the yelling, the punches thrown. He absorbs these behaviors into his self-esteem and ends up feeling badly about himself in a deep way.

And of course, these darker episodes resonate and remain with our whole family.  All 5 of us have developed ways to cope, to continue, to normalize a very abnormal situation. But we all wear our scars. As parents, this is our job. But what about the siblings? How OK is it to continually expose them to Willie's meltdowns with all their implications?

So we continue to weigh each routine divergence, whether it be a dinner out or a family vacation. This is a heavy and complicated decision. The trickiest part is that the further you are away from a recent meltdown, the more positive and possible another one of these adventures seems.  And of course, when you have your other kids' well-beings in mind, it is an impossible decision.

For now, the May family trip for the cousin's Bar Mitzvah does not include Willie. We all sigh a breath of relief. Except, of course me and my husband, who after the breath, contemplate all the opportunities lost for Willie. A tricky job indeed.

Always Connected: Always Protected: Raising a Son With Special Needs

Willie had his first seizure at 3 months. It was a doozy: over 2 hours long. There were many more. Monitoring Willie's seizures has become a hobby,  the positive spin: an obsession, the negative.

For years we carried pagers and the newest of cell phones to be reached if Willie had one of his Status Epilepticus Seizures: the ones that do not end without intervention. Back in those days, you had to go to the hospital and get Intravenous Valium to calm down your brain to stop the seizure. There was always at least a one-night stay in the hospital afterward. Talk about DRAMA.

Every night until he was at least 13, we slept with the Baby Monitor on, to hopefully hear if Willie' s brain decided to go haywire once again. One night we forgot to turn it on, Willie's seizures slowed:  we purposefully didn't turn that monitor on most nights anymore. You had to accept a safety: a complacency that Willie was OK. The Grand Illusion.

But on our recent visit to Willie's Fabulous Neurologist, it seems that seizure monitoring has changed. At the end of the appointment, the Doctor said "never let Willie take a bath alone!"  After 21 years of loving baths, no one has ever said this to us. Yes, it was implied when he was young, but my Man-Boy still loves those baths BUT requires privacy.

After I pulled myself together, I said to the Doctor, "um, what? How do you manage that with a 21 year old?."  It was then he handed me the brochure for The SmartWatch, the newest Seizure Monitoring device.  The outside of the brochure says "Always Connected. Always Protected." Another Grand Illusion? Perhaps, but something that can make us constantly vigilant Moms hopefully sigh a breathe of relief. The perfect panacea.

So I slept on this decision and slept on it and then some more. And in the end, I have decided to skip The SmartWatch. I don't want to be "Always Connected; Always Protected," for I know that can never be true. If the seizures, those big, bad scary ones that do not end, start again, I will discover them: Hopefully. Willie's last one was in the Ocean and thankfully, his teen caretaker figured something was wrong after Willie didn't get up out of that Ocean.

In the meantime, I check Willie more than most Mothers of 21 year olds. The Phone ringing sets off my adrenaline every time, wondering if Willie has had another seizure. If Willie sleeps later than usual, I go in his bedroom and check him. Check, check, check, I am "Always Connected" by my Maternal Heartstrings but "Never Protected," for that is the life of seizures.

Breath In, Breath Out: Raising A Son With Special Needs

Willie is home for Christmas Vacation. His Vacation from School lasts 14 days to be exact. I could probably even tell you the minutes and seconds. You see, although I adore Willie, he is impossible to be with when he is home for extended vacations.

I thought I would continue to write this blog during these 2 weeks, as Willie's presence would give me oodles to chat about. Instead his presence is too loud and heavy to even hear, see, or do much of anything but wait for him to go back to school.

Oh I admitted the taboo of parenthood: My child drives me crazy: This parenting thing is just too hard for me! That taboo is even bigger in the world of Special Needs Parenting. But it is true. Willie's meltdowns are relentless, unpredictable, and exhausting. His negativity is all-encompassing, creating a stagnant, stale, and stuck atmosphere. Navigating Vacation with no schedule and 3 other siblings is like driving a leaking ship though an iceberg in the middle of a blizzard. Who can even think in-between the planning, reacting, fixing, negotiating, with constant meal preparation, cleaning, and chores in-between. I cannot find the mental energy, creativity, and motivation to write about the eccentricities, the stories, the lessons Willie teaches.  I am only trying to keep my ship from sinking. I can only concentrate on breathing. Breath in. Breath out.

Willie leaves in 4 days. Oh how many new anecdotes I have to share on this blog. Not now tho. For now I can only breath in and breathe out.

Stay tuned...And try to keep afloat!