Tag Archives: expectations

Bubbling fountains of exhaustion…

21 Apr

Plumbing/H2O conservation event

I am exhausted from having to spend time (that I should be spending with my child) defending/explaining myself as a parent to other people and managing unreasonable expectations of other people.

I’m thinking of printing up some wallet cards- on one side they will say “My child has ASD. Your ugly, judgmental expression and attitude is making him scream louder.” On the other side they will have a host of facts… There will probably be some snide comment about Rainman and of course something about Autism being a spectrum. Possibly the definition of  spectrum as it seems to evade the people who latch on to Rainman as the diagnostic criteria.

But it’s not just strangers.***

A great piece I read recently for grandparents with a newly diagnosed grandchild with Asperger Syndrome mentioned how to behave if they don’t believe the diagnosis and how to find more information about Asperger’s. It’s a perfect letter, even in it’s very broadness.  I’m amazed on a frequent basis how many people (friends, family, acquaintances***) tend to ignore the diagnoses and trials we have faced in the past 6 years. It’s a type of denial that from afar seems like the most loving, generous acceptance, but from this perspective is just plain ignorance and refusal to accept the reality.  Every article I have read about special needs parenting and grandparenting speaks of mourning the loss of the dreams one had for their imaginary perfect grandchild.

Blech.

I get that it needs to happen for many people and it’s part of the healing/mourning process. But I also think that lots of parents with a special needs kid don’t get the luxury of going from everything is fine to a diagnosis and having time to process any of it.  We are entirely too booked to spend time doing anything other than supporting our kids and most of us don’t just wake up one day and say “Johnny is sort of ‘off’ compared to his peers”, it’s an ongoing and lengthy process.  It’s also incredibly isolating in so many ways.  Grandparents and other relatives*** adjusting to a diagnosis, if they share the information, receive sympathy and support which is wonderful.  As a parent who has been through the wringer, I wish I didn’t feel like dancing around singing “I told you so! I told you so!” in full operatic blast at the people who called us names and labeled us and suggested we improve our parenting skills rather than pursuing a label and help for the broad and invasive symptoms our son was having. I wanted a piece of paper that has his diagnosis, I wanted it framed and a mini laminated one for my wallet. One that says “See, I’m really an awesome parent to the world’s most amazing little boy who happens to have ASD” (It would also have a little *ASD is a neurological condition and not a result of poor parenting or non-corporal discipline” and possibly a genuine, heartfelt “Na-na-na-na. So there. Pfffft.”)

If I could I would enact a law that would make people apologize for the hurt they bestowed upon the exhausted parents, and the child.

I think one way I can make lemonade out of our scary and horrible 20 week ultrasound (we had a bunch of red flags either for Down Syndrome or genetic disorders incompatible with life, turned out to be due to a scheduling error. Yes, my hair did start going gray on the spot) in that it made me examine the expectations for my child.  Alex’s hydrocephalus and initial kidney reflux made me examine the expectaitons once again.  When he was a year old the early intervention case worker asked what our goals- short term and long term- were for Alex.  Nobody wants to go through any of this special needs stuff, but really, understanding one’s expectations and setting goals for your child and for yourself are crucial.  I understand the need for Kubler-ross’s stages in processing these things, but to be blunt: I don’t have time to hold your hand. My kid needs both of my hands 24/7/365. I can steer you toward sources that can help, but frankly I have been on my feet 24/7/365×6 (except for the few months on bedrest when I was called selfish and uncaring because I did not appear at one birthday party) and the only me time I have is the 15 minutes in the shower where I really just lather up and cry so my kid doesn’t have to ever think that the tears are because he is different in so many ways.  They aren’t. They are because I am exhausted and when I have opened up about our trials and tribulations and our triumphs I am told I am too negative or obsessive or I just talk to much and I go on and on (I do. Guess what? Kids with Asperger’s usually have a parent with many traits. Definitely applies here.)

Which brings me to the 2nd most exhausting thing : having to manage other people’s expectations. Those folks living in semi-denial (they seemingly accept your child by ignoring their differences completely- lovely and sweet but it brings a whole new element of feeling like one is living in the twilight zone as they brush everything off and saddle you with a virtual straight jacket while your child gets himself into dangerous situations and they just smile and tell you to stop being paranoid and overprotective as that’s what all boys do.).  They don’t accept the reality, they cannot form any sort of support whatsoever. They can’t even watch your child safely for an hour so you can go to the gyno without holding a puking an infant during the exam or so you can just let go an nap without worrying about every little noise.  Because they, in their denial (for lack of a better term, I also think of denial in many cases is better described as intentional ignorance) can’t possible babysit for your kid because they don’t really see your child in all his/her real, rawness. They see the child they expected, particularly in the case of kids with invisible differences.  They may comment on your parenting as a potential trigger to the child’s differences. Every minute of everyday of my life, since we were trying to conceive, has been dedicated to my son. I would love a day off, or an hour where I don’t have to divide my senses to accomplish tasks and keep him safe.  The reality is that without the attention we have given him, he wouldn’t be in school. He wouldn’t be communicating with any of the other kids in any positive way. He wouldn’t be able to sit and focus on some of his favorite activities.  Explaining that he is not cured and this is a very real thing that requires this much attention and having to defend our decisions as his parents is so exhausting.   The only thing keeping them from accepting our kid is themselves.  Their intentional ignorance (they have as much access to resources as I do, they can ask if they need guidelines or information, but they never have) is based on their expectations.  We are burdened with their expectations, thankfully we aren’t further weighed down with our own as we know better.

When Alex was born we were burdened with the expectations of a relative who expected Alex’s birth and the following months to follow what she had imagined, but no adjustments were made for actual circumstances (high risk, prematurity, c-section, NICU stay, and weak immune system and RSV/flu season quarantine) and who suffered for it?  The handling of those expectations, the intentional ignorance (it was decided that we were paranoid neurotics because we wouldn’t visit with anyone with a cold, flu, or mono or visit hospitals with our preemie. We were listening to the guidelines given to us, and frankly common sense, and passed the information on to family and friends to protect our premature infant), still does damage to Alex and to me and to my husband(and some people have still not bothered to read a single article that would tell them that we were rational and being good parents, not neurotic germaphobe freaks).

We don’t need this extra stress, we have plenty.

So my advice, if a relative(near or far) or friend has a child diagnosed with anything, ask about it.  Do not pretend it is not there and do not pretend it is the end of the world or make light of it.  Please do not base your opinion of our parenting and our child on some other person’s experience.  If you really want to help, if you really want to continue our relationship in this new leg of our personal journey, then don’t say “if there is anything I can do”, the best thing is to just ask about our child, or this new path we are on. Just ask if there is anything you can read to learn more, so you can understand and help when the parents or child need it, even if the help that is being begged of you is as simple as a receptive ear.  Throw your expectations out the door. Even if you have experienced something firsthand, you have not experienced it from my unique perspective, or that of my husband or child, so put those expectations of all of us far, far away.  It can help each and every one of us. It can make our little world, your world, and the world at large, better a more peaceful and enriching place.

So, if you are a parent of a special needs child, or a special needs parent of a non-special needs child, or if you are a special needs parent of a special needs child please speak up! I’d be curious to hear what you have to think.  I’d also love to hear from extended family members (anyone’s family!) who have had a child diagnosed with a neurological/developmental disability and how you have handled it (for better or for worse, it can only serve ot teach, right?)

Big hugs all around…

xo

Bek

***p.s.  This, by far, doesn’t apply to every family member or friend in our lives. I guess it is those squeaky wheels that get the grease (or the can of whoopass, as the case may be).  If you have never even had the slightest thought along the lines of “I knew this would happen” or “It’s because they are isolated freaks” or  if you have never felt slighted because we did not participate in something that was focused on you or anyone outside of our mini- three person tribe,  then this stuff probably does not apply to you…  And you get an extra special thanks. Wish it were more, but yeah, you probably just read this and well: THANKS.  Big hugs.

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Even scarier than I imagined….

29 Mar

We have had the Monsters Vs Aliens release weekend on the calender since boy and baldguy first mentioned it.  Alex was so very excited and we promised him that as long as everything went smoothly we would take him to see it on Sunday.  Saturday went really well. So this morning, off we went to the 10:45 showing at AMC Merchant’s Crossing in North Fort Myers.

Despite some rather negative reviews, I was going along with the boys so the whole team could make this a pleasant experience for all involved (nameless strangers, no need to thank us, you shut off your cell phones for the entire showing, and for that I believe we may be even) and based on the assumption that no matter how horrible the movie could possibly be it wouldn’t be some of the stuff that makes me loathe trips to the video store because it’s at eye level and kid will fixate and I’m too tired for that battle (so now we use netflix and it’s a thrill & surprise for him every time and lets him focus a bit more) .   On the drive to the movie theater Alex exclaimed “Oh no! We forgot our 3D glasses” and we explained that it was ok, that we would be getting new 3D glasses at the theater.

Oddly enough, the ticket window lady told us that the theater was only half full. Which was good, because  I bring some neurotic tendencies to the table- I don’t like to go into a dark theater to find a seat and I prefer to keep the ratio of us to the people who could eventually candy ooze and popcorn us and feed us to the local gators at a much wider spread, so we can gain some distance, if necessary, for a running head start.  No, this has never happened. But having a kid with sensory differences that go hand in hand with PDD/ASD, makes us a little cautious.  I’m sure there are folks who would argue that we shouldn’t hide our child or apologize for him, and we don’t hide him, but I was single and childless long ago and as a single ticket holder on planes, trains, busses, and even the occasional theater or restaurant,  I have been frequently seated in that spare seat near the family with a bajillion kids under the age of 5, of course bajillion is an odd number in these scenarios, leaving that extra seat for yours truly.  So while I am not hiding my child, I do try to be considerate as I can pretty much guarantee that people did not pay $10+ for a ticket to the us trying to calm Alex show (or the screaming infant in an R rated movie show either…again in my childless days I know I wouldn’t have even taken a $5 matinee ticket to see that show).

Anyway, immediately upon finding our seats, J & A take off to do the necessary tour of the restroom, or else Alex will obsess the entire film.  They come back with beverages and popcorn, toward the end of the previews.  By the way: I’m so excited about Where the Wild Things Are (the preview made me weepy & gleeful it was so lovely), Cloudy With A Chance of Meatballs (one of my favorite books and it looks like great fun on the big screen), and Up (clever, funny, a wild ride…at least from the preview).

On return Alex mentioned again “but I don’t have any 3D glasses” so Jeff went to investigate. Honestly, I haven’t been so up on the technological advancements of film, so I shyly assumed nobody else has them maybe we don’t need them. I was wrong. How wrong? Wrong wrong wrong wrong wrong. Jeff returned with the news that this theater doesn’t show movies in 3-D.

Blood Curdling...(Or maybe just milk curdling...It's citrus after all)

Blood Curdling...(Or maybe just milk curdling...It's citrus after all)

Yeah.  My thoughts exactly. We’d prepped kid for the movie experience, as usual. But we did not prep him for this. Heck, I could have used a warning.

And why didn’t we know this before deciding to come to this theater? or when buying our tickets?

I took a peek when we got home- moviefone.com specifies Monsters Vs Aliens 3D on some listings, at some theaters.  But not at our theater- it just says Monsters Vs Aliens.   I’m guessing that I’m not the only one that thought it was in 3D the way that the superbowl promos were on TV- available on every color television (theater) and viewable with 3D glasses.  I guess if we knew the finer points of the technology and equipment and specifications required to project such technological awesomeness (according to the hype) for the masses then we would have known that not all theaters will show it in 3D. If we had followed the film magazines maybe we would have been more wary. If the 8 million ads we have seen did not all say in theaters real3D -without explaining that real 3D is special equipment and not available at every theater, then we would have been prepared. So really, if the 3D is being pushed so much in the ads, and there is no voice over saying “in 3D where available” or “in 3D in participating theaters” then guess what?  I’m going to assume it’s in 3D everywhere. So when Jeff searched moviefone.com by zipcode, it didn’t stand out that there were different listings for Monsters Vs Aliens 3D and just plain two-dimensional Monsters Vs Aliens.    Really, if they are going to only promote as a 3D (at least in our market) film but then slip some 2D versions in, couldn’t they at least market it as Monsters Vs Aliens in True 3D, and Monsters Vs Alients NOT in True3D.

I guess, I have experienced IMAX to know it has special requirements and to see it we have to go to a specially outfitted theater, but with the widespread release of Monsters Vs Aliens it never occured to us that “real 3D” required a different outfitting than a regular 2D cinema.

Anyway, frustration aside, Alex didn’t freak. He did request another visit to the restrooms, so I took him so we could talk.

He was so bummed that it wasn’t in 3D, I was bummed that another movie outting would have to happen to have the 3D experience. (Can you tell I don’t get out much?  these days it’s hard to go anywhere, I really had to summon all of my strength for today, so the idea of going to see anything in the near future is bleak) Or that I would be subjected to another movie viewing today so Alex can get his 3D fix (shark boy vs lava girl is a favorite lately).

He did fidget, blow bubbles, and at one point hummed Ode to Joy rather loudly as we came back from the bathroom (where we saw a cockroach, which Alex talked about loudly enough that the other folks in the bathroom were quite hesitant to even move…As was the cockroach).  But he did ok, considering the build up to this experience and the let down.  He wasn’t more fidgety or chatty than the kids sitting behind us, so I take that as a good sign.

He did remind me that we forgot the 3D glasses, after the movie, so I think he thinks we screwed up completely. And we kind of did, but now we know, and he was fairly cool about it, which to me is a huge sign as to how much progress he has made.

I am though wondering if some of the other folks in the theater thought it was in 3D as at least in the previews the animation and the projection were so crisp that things did feel 3D-ish….

Anyway, strategy for next time:  triple check the availability of 3D.  Avoid AMC Merchant’s Crossing completely (the popcorn is always insanely salty and somewhat stale, not to be a picky freak, but I like good movie theater popcorn. Ask Jeff, we once had to drive by a movie theater just for popcorn when I was pregnant.). Bring the weighted vest and quiet fidgets for Alex to put on when he starts getting a little stir crazy and so he can keep his hands busy and enjoy the rest of the show.  Bring a plastic cup with lid from home (water bottles are not our friend). and arrive 10 minutes early for the trip to the bathroom, the snacks, and finding a good seat, far from the maddening crowd, for their sanity and ours.

As far as the movie goes- it was ok. The usual fare…Not as engrossing as some, but the characters were kind of neat and there were definitely a few laughs.  It really was a quick and not too shabby ride. Even in 2D. Not as horrible and empty as some have made it out to be, and clearly it stands on it’s own in 2D, but I did keep thinking, after certain angles and movements: gee that flying/punching/bubbling/exploding thing would have been great in 3D.

Our experience here is a perfect example of setting customer expectations appropriately and how that relates to a customer’s actual experience with a product. As my expectations were not set appropriately or accurately by the advertisements/marketing of this product, I was allowed to make my own expectations without adequate guidance. The human mind is a vast and powerful thing, we use information to guide our forming of expectations about everything, when we are misled, it leaves us feeling cheated, perhaps angry even, it sours us to repeating an experience or even a related experience.  So how are you setting customer expectations? or even non-business interpersonal ones?   I’ll discuss this further in the upcoming week.

Also, if ayone wants to share any tips for taking sensory sensitive kids, kids with ASD/PDD/Asperger’s to the movies or any other sensory intensive experience, please comment, I’m sure we can all learn something!

I love you with all of my…

22 Jan

I always wanted to make sure my child would know that I love all of him.  There are no conditions on my love for him.

I did not have that sense when I was growing up and I was told more than once that the parental love I was receiving was completely and utterly conditional. This is not an assumption, on my part, but a spoken fact. “My love for you is not unconditional”.

Anyway, I love my little boy unconditionally.

When I was pregnant with Alex, we had an ultrasound that indicated almost every marker for various chromosomal abnormalities, some of which are incompatible with life.

While we waited the three long weeks for the results of the amnio we sat and we thought. I cried. I think that almost six years later I am still a little dehydrated from those three weeks.  I couldn’t speak to anyone, not even my husband, Alex’s dad.  I did speak to my mother before the fear and sadness really sunk into my bones, and while I explained and broke down, I was called stupid and told that the only option was to terminate the pregnancy and that I shouldn’t be cruel, I should do it immediately and not wait for the amnio results. She ordered me to stop crying because the chromosomal abnormalities were my fault (unconfirmed abnormalities at this point, unrelated to any available family history or parental health conditions) and that I should accept my role as parent and terminate rather than make this child suffer further.

Between the tears, and the long naps, and the anger, I did some research.  This time period really defined me- the mom.  Everyone hopes and everyone dreams and most prepare for a healthy, perfect baby.  We all know that doesn’t always happen.  We all know that the best laid plans are frequently rerouted, rewritten, torn up completely and replaced by newer dreams that are sometimes shinier in very hidden, and very arduous ways.  This was when I learned that love doesn’t mean caring for someone in health only, which is a lesson I had learned first-hand years before, but it took this to understand the enormity of become a parent, the hopefully never-ending-ness of it.  And I learned that from both sides of the loved one and caregiver relationship during those few months, and since, in sometimes joyful and occasionally heart-smashing ways. I have learned to pick up the smashed pieces and reconnect them in new ways, a crazed mosaic of hopes, dreams, and love.

I realized that my parents were the one who could not accept damaged goods, damaged people.  I realized that my ability to love was not destroyed by the love that was conditionally given and taken during my 27 years (at that time).  It was then that the tears dried up (briefly, I am an emotional gal) , I pulled on my fleece slippers (my ankles were swollen, I couldn’t wear my combat boots or my ass kicking heels), and we figured out our plans. We figured out our formulas, our conditions, for how we would handle the information that the amnio would return to us.  It had everything to do with unconditional love and respect.

In a few months that revelation will reach it’s 6th anniversary.  The scare, the waiting, the distress, the crash course in everything from DNA to femur length to a parent’s love for their child, was an accident.  It was a terrible accident, due entirely to a scheduling error, as the test that set off the need for the amnio, and the horrible waiting, was scheduled too early.   I am grateful, though, that we were forced to define the why of our desire to become parents.  That ‘why’ still guides me when trying to determine our next step in helping Alex and helping our family, it is my personal mission statement, my grand goal for my parenting of Alex (which I will share in another entry, at another time).

Everyone says, before they have kids, that they will parent differently… I’ll never this, and I’ll never do that… The errors of my parents, so clear in my current year, are grand and horrible and shocking. I know I will and have already made mistakes that perhaps Alex will remember or only notice when he is in his thirties. But my hope is that he will know that I am human, and flawed, but that everything I did, I did with unconditional love for him, all of him.  I will never allow a day to pass without letting my kid know that I love him. No matter what.  I will never judge him based on what he cannot do, or punish him for his quirks, or demand that he behave more like so-and-so’s child (who is not Alex, not in any physical, cognitive, or emotional way).  I will provide the encouragement and support that he will try without fearing failure to such a paralyzing extent that he cannot try, so that he will have opportunity to succeed (can’t have one without the potential for the other).

Ok, onto the picture of the day…. With his PDD/Asperger’s, Alex is fairly inflexible regarding many things- word usage is a big one.

I have always told him, “I love you with all of my heart, all of my soul, and all of my brains too”. He giggles at this and replies “Brains!” in a way that is a little unnerving in a darkened bedtime room, coming from a kid who has never even seen anything zombie related (although we do have the Zombie Survival Guide, which was one of the funniest and coolest baby gifts from a dear friend. Thanks Ig!).  A little over a year ago I started replacing “brains” with other words, I do this sometimes to see if he is paying attention, and also to show him that a little flexibility can be funny and sweet and not distressing.  It’s best to do this sort of thing when he’s all blissed out on bedtime stories, lullabies, and good night kisses.

“….and all of my cranes too”

“…and all of my trains too”

“…and all of my drains too”

And he has always corrected me.

After school today, he played with his old Brio trains for a long time (so long that I went to check on him and his dad, as in our home “don’t worry unless you don’t hear anything” is part of our parental code)…

I had retired to the bedroom with my laptop and some tea and was typing away when I saw him at the door.

Trains

He had an armful of trains.

I put the laptop aside and he dropped a pile of trains on the bed with me.

“Mama,” he said “I love you with all of my trains.”

He was so proud and so happy. He is so literal and wonderful.  I was trying to help him and really he found a way to meet me in my goofiness.  In my heart I know he is still protesting my playful use of incorrect words and terminology, but that he ran with it, for just a moment, and put his own special signature on it.  And that gives me hope and strength and a warm, happy heart.

At the end of the day, it’s not about what we don’t have or about a loss of dreams.

It’s about the heart, the soul, the brains, and most definitely trains.

xo

Bek

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