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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5 Responses to “Bubbling fountains of exhaustion…”

  1. Michele April 22, 2009 at 9:05 am #

    First off- thanks for your comment. I tried to write back, but your email server wrote back and told me I was spam, lol. But yes, the whole cobra experience is maddening.

    As to your entry – I have two special needs kids. The youngest has aortic stenosis with a bicuspid valve and secondary left ventricle hypertrophy. In other words, his aorta’s too small, the valve leaks, and his left ventricle is too big from the workout it gets. He’ll be having open heart surgery in 1-2 years to replace parts with prosthetics every other year until he’s fully grown. My oldest has learning disorders and Disruptive Behavioral Disorder NOS. Which is a fancy term for emotionally unstable. For my son, his main things is we had to physically teach him empathy. He didn’t naturally pick it up like most kids do. His temper/anger is WAY out of line for his age – like 17 year old angst in a 9 year old’s body. Our first clue was when he was 18 months old, he was mad, bit me, and then wouldn’t let go. My husband had to pry his jaws open. I still have the scar. It’s a long process. And I may smack the next person who says, “He just needs a little more discipline at home.” We ARE strict and disciplined. We have to be, or the child wouldn’t have survived until now. Oh, and according to my in-laws, his issues stem from me having been a work-outside-the-home mother who’s career was too important (I was a secretary.) They’re in total denial. My parents are not in denial, however, sometimes they lack understanding into his reasons for doing things – and then I have to back them up and go over the diagnosis again until the lightbulb goes on. Then there’s my best friend. She just accepts. Other than the parents, she’s the only person I trust to babysit them. Ever. And the school… He’s been on an IEP since K. He’s in therapy. We have mental support from the state. And sometimes they still exclaim surprise at his behavior. I want to ask, “Um, have you MET my son?” Sometimes people think he’s on the spectrum, but he’s not. They’ll look me and nod their heads understandingly and say, “Spectrum, huh?” And I’ll say no. Totally different neurological disorder. And suddenly I’m on the “Just needs more discipline train” again.

    Wow. I guess you touched a nerve, huh?

  2. Bek April 22, 2009 at 2:11 pm #

    Thanks for your reply!

    I guess I did touch a nerve- this (and a few other related things) have been stomping on my nerves for 6 years. I finally decided that the only mildly rational thing to do was to blog about it (before I explode. me exploding would not be beneficial to Alex, despite what some people (the engineers & conductors of the “just needs more discipline train!) think.

    Giant hugs!

  3. Heather April 24, 2009 at 8:05 pm #

    I just surfed on via twitter and can I say I want to jump through the computer and give you a high-five/hug combo?

    YES!!! YESSSSSSS.

    Ahem. Carry on.

  4. Suzanne April 27, 2009 at 6:00 am #

    Bek,
    One word…FANTASTIC! You have mirrored my thoughts completely! Would love to show it to all the intentionally ignorant in MY life! I am at the point where I can no longer get involved in emotional battles (there are 8 siblings!) and have to remove myself. When I explain that I really just have too much on my plate to become embroiled, I am labelled selfish and obsessed about Asperger’s. I have been told that rather than spending time doing everything in my power to help my child (as you know, it’s a full time job) I really need to get back out there and start working again (i.e. “get a life”, as though this is all just a life choice I’m making; with the “right” discipline he’d be fine!!). Thank you for your powerful prose.

  5. Fiona May 25, 2009 at 10:42 pm #

    That was so well written Bek, I cannot even think of a single word apt enough to express how I feel. So I’ll use several.

    Awesome, incredible, thought provoking, amazing, fabulous, inspiring, helpful, inciteful, brilliant etc etc etc- you get the picture!

    And btw, when you get those cards printed up……I WANT ONE!!!
    Fiona xxxx

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