Tag Archives: preemie

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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Now I Lay Me Down To Sleep…

6 Mar
3 days old, first time I was allowed to hold him....

3 days old, first time I was allowed to hold him....

(I chose these image from the NICU… They don’t quite feel like a fit for the post but they kept hollering at me..)

I can only imagine how it feels to lose a baby.  Even during our ten days in the NICU, the deaths of the tiny patients were not spoken of, for us outside that baby’s family, it was marked by the absense of an isolet or incubator that was crowded with doctors and loved ones only hours before.  We knew, all the parents knew, that we were fortunate as it wasn’t our baby. But it could be. In the NICU the emotional stew that you live in is a lifetime of emotion and stress in a matter of weeks or months…It’s a lifetime compacted into a tiny room and a tiny plastic box with portholes, wires, tubes, and distressing alarms.

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

But we were lucky.  I don’t think I will ever forget how lucky we were that Alex was ok. My mother was annoyed when I mentioned other babies in the NICU, who were there before Alex and stayed long after he came home, or who “disappeared” overnight-focus on happiness, she would tell me.  I truly believe that the stark contrast of what we had, and what could have been- what was a reality for many people, makes me appreciate Alex’s survival much more.

Since Alex’s birth and many changes in the life of our family, I have, in my journey, seen friends and family lose children at all stages of development, at all ages.

I can only imagine the loss of a child. I am grateful that I can only imagine it.  Perhaps I am not imagining it accurately, but I know my love for my son, and how the possibility of losing him has felt, and the helpless, drowning sensation that his distress, prematurity,and neuro issues, and the two miscarriages before my pregnancy with him, have impacted me on so many levels…  I can only extrapolate and the place where I wind up is stifling, hot and humid, very dimly lit…I imagine it to be like a vat of a viscous substance- like molasses- drowning, muscles aching as they try to move, there are no words, but by some cruelty you can still breathe, even if it’s hard and physically hurts….I can only imagine that the reality is much more terrible that what I can imagine. My heart goes out to anyone who has experienced the loss of a child, their baby, at any age or stage.

My cousins Aimee and Julie, just introduced me to an amazing organization that helps parents who are facing the death of their baby remember their child.  The site for Now I Lay Me Down To Sleep has much more detail about the program.  Here’s a paste from their about me:

“This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.”

I checked out the site and I really wanted to help, to honor the families that I know that have lost a baby, which is why I’m trying to help spread the word…

They are currently running a fundraiser to support the NILMDTS mission. Our cousin Jaime  is participating in a national model competition that benefits NILMDTS.   Please consider visiting the image gallery and voting for our lovely Miss Jaime while supporting a wonderful cause.

You can see Jaime’s picture and vote for her by visiting:

National Charity Model Search benefitting NILMDTS

Every vote cost $1.00 and every dollar goes to a charity group close to our hearts, Now I Lay Me Down to Sleep (www.nilmdts.org). Jaime also has the opportunity to have a photo shoot with a renowned photographer if she is in the top vote count by March 15th, 2009. Please be generous and vote by then if you can! You can continue to vote until April 2nd, 2009 to give Jaime the chance to be the National winner!!
Thanks a bunch….

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Semi-break….

2 Mar

For those of you that don’t know, I am taking a brief break from making custom pieces… My shop is still open, I’m still shipping, but I needed some much needed meditation time… It’s hard. I want to make stuff. I need to make stuff. But I’m pulled elsewhere.  Perhaps all of this time away will refuel my creative tank and I’ll be able to play again… Lots of things are going on in clever-land…  The occupant of much of my brain and heart-space is, of course, my little guy… Tomorrow we head to the new neurologist, as recommended by his occupational therapist, to discuss some of the flags she has seen, and of course, that we have seen.  When she first mentioned the idea of making an appointment she also suggested writing down all of the “quirks” that our guy has.  So for the past month and a half, while waiting for our appointment to come up, I have been looking at my kiddo, and myself, with a magnifying glass that is perhaps too strong.   I spent this past week crying every time he did something that isn’t typical of a regular kid.   I am realizing, with every magnified step that if there was doubt that he is different (and I’m not talking different as in wonderful different- I’m talking about the kind of different where it is hard for him to function in the world just as he is -different)  that doubt has vanished. Part of me dug my heels in today about going to the initial consultation tomorrow.   It’s like folks who dwell in denial- if you don’t go to the doctor than nothing is wrong.  Of course we are going.  Of course going tomorrow doesn’t change anything for the negative.  Going tomorrow is not going to make my little guy different (for lack of a better word). It’s not going to brand him with an affliction.  The only thing that can happen is that we will learn something and be given a giant spotlight instead of the miniature magnifying glass to help us find the tools that can help all of us.   I’m also reminded of when the early intervention folks came for the evaluation almost 3.5 years ago, for his gross motor delays – his pediatrician and neurologist and stay in the hospital and testing had all asked about the things that he didn’t/couldn’t do.  The early intervention social worker asked me “What is he good at?”  and I was floored.  Surely he was good at many things. But we had already been trained to look at the solid negative evidence in front of us and not see the sun breaking free of the clouds.  I’ve kept that lesson- to see the light even when being told to describe only the darkness- because you can, with so many variables have one without the other if you forget to see it all. Anyway, tomorrow we will go and hopefully it will be the beginning of a journey for our family where we will all have the tools to have more good days together.So this is what I’m focusing on… Well, this and reorganizing every bit of anything in our home and my studio so that there will be less distraction for all of us and we can work on having a bit more structure.   My kiddo tends to be pretty black and white about everything and hubby and I tend to be more grey-area, less structured, more artistic….We are trying to find a happy medium…. Hugs all around.  And for the love of pete if someone could tell me why none of my formatting is keeping please please please let me know… :-)

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