Archive | April, 2009

Label Making.

23 Apr

labels

Labels.

Originally uploaded by CleverIndie

Awhile ago, before we really understood what was going on with Alex, I blogged about my label maker…

I really have stopped using it (yeah, not so much disorganized as trying to get rid of the unnecessary things and not commit to keeping them by putting them in a box and labeling them, but not totally committed to….let’s just say my brain is elsewhere… and at this rate I don’t know if I could find it if I needed to)

Before Alex started pre-school he was obsessing over my label maker.
As a reward for doing his best (with anything really) I would let him use my dymo handheld label maker to print one label.

I figured he might type his name, maybe the alphabet A-Z, perhaps some numbers…He took to typing things out in the way one might use a speak & spell…

This image consists of all of the labels he made over the course of a couple of weeks.

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.

Dr. Literal, Mad Scientist

4 Apr

Raaaaaaaar!

Originally uploaded by CleverIndie

We are so used to Alex taking everything so extremely literal, or having a rather drawn out reaction (he’s a worrier) to things that are even slightly out of place that we really do what most folks would call “overthink” when it comes to daily activities, gifts, even clothes.

I’m guessing that most parents with kids with ASD or Asperger’s or anything under the PDD header go through this as well. I hear complaints about it and how it’s “abnormal” from my mother (her word not mine) but really, we don’t have much of a choice. It’s not that we spoil him so he always gets his way. We do take preventative measures with some things- we brief him before we do anything new.

I’m sure any parents of non-ASD kids make sure they have batteries for the toy they are giving their child as a gift, or else there could be some serious fallout (especially on Christmas morning, or if there is a sizable quantity of sugar involved).

We are that prepared for everything. It’s getting easier, as we have been working our behinds off with Alex, trying to improve his flexibility, self-soothing skills, and creative problem solving. He has come so very far- we can now crack the occasional joke and he will laugh or even if its not funny (joke delivery is not one of my well developed skills, I confess) he won’t break down into a full on freak out that takes over an hour to calm him.

Recently, he became the proud owner of an Easy Bake Oven (for use only with us, of course) -the image clearly shows a digital clock on the box- so I read every mm of that box for the words “simulated digital clock” or something similar. When we got home and unpacked it we found out it is a simulated clock, we braced ourselves, but Alex announced he could use my little kitchen timer instead. Phew. Big sign of relief. This is a kid who has been carrying around my old, broken cell phone for 2 years and until recently would not play telephone with it, but would follow me around trying to calmly explain that all it needed was to be charged up and as the grownup it was my job to plug it in, in complete denial that it was completely busted, and then would have a meltdown when we took it off the charger and it still didn’t work.  Recently though he started clipping it to his pants and paces around talking to various people on it. He is pretending, this is huge. He’s really into it- to the point where  he’ll say “shhh, I’m on the phone” with his hand over the mouth piece, if we are repeat offenders we get nasty looks and occasionally the suggestion that we will get a time out if this interrupting continues.  I’m so proud of how far he has come….

Just when I was thinking that we are out of the woods on maybe one little thing, we had another literal interpretation incident though that really drove home the recognition of what a strange place the world is, as a sum of all of it’s parts -particularly those with marketing and advertising people behind them.

From the bathroom I hear (Alex is an announcer. He narrates every moment of every day, repeating much of it a few times until someone acknowledges what he said by repeating it to him, at which point he will correct them or act angry as though we can no longer discuss the topic at hand.)

“I’m using the water to make the bubbles go away, but it keeps making more in my mouth”

Then he comes around the corner and he’s wiping out the inside of his mouth with a hand towel.

He announces “Oatmeal and Butter, I didn’t taste the butter, I don’t think there was butter in there. Is there butter in there?”

Our child, who approaches even edibles with great suspicion, apparently saw the new soap pump next to the basin and his brain interpreted the soap to also be a snack- one of “oatmeal & butter” which are two things that he really likes, so he squirted a bunch of the “oatmeal & shea butter liquid hand soap” in his mouth.

Yes, I realize we are very lucky that it wasn’t something toxic. He has been making great strides in reading and he is very rules based and a very cautious guy. We have had other tasty sounding soaps (milk & honey, almond, grapefruit, etc) that he never would have thought of tasting, so what made this one different? On the bottle it has a photo of a bowl of shea butter (all whipped up, could easily be seen as regular culinary butter) with a pile of dry oatmeal sprinkled around it. The other soaps we have had, that had culinary inspired fragrances, only had the names not the images- Alex reads very well, but as a kid who usually needs a visual reinforcement, the snacktime liquid soap from today really had him thinking he was in for a tasty treat that he could not resists (other household cleaning products don’t interest him at all- never had, they are locked away, of course… He has his own small spray bottle of water, vinegar, and lavender oil that he cleans his desk, snack tray thing, and step stools with).

By the way he said the soap didn’t taste so bad. Good to know.

From now on we will be using a refillable dispenser, and when shopping I now know to avoid anything non-edible with an image of foodstuffs!  Oddly enough, when I was very little I was threatened with having my mouth washed out with soap around the same time I learned the term “acquired taste”, so I would eat Ivory soap (and occasionally dove, depending on where I was in the house) a little fingernail sliver at a time.  I think I assumed that if my parents swore so much that I would someday speak like that as well, and I wanted to be prepared.  Imagine the horror on my mother’s face when she said she was actually going to wash my mouth out with soap and my response was to grab the bar and take a large bite out of it without flinching.

Anyway, hugs all around!

There are a few new pieces in my Etsy shop… Still on my crazy medical journey…And still getting the new blog just right so I can have a good and proper blog-warming!

xo

Bek

Autism Awareness.

1 Apr

Operators are standing by!

Originally uploaded by CleverIndie

April 2nd is World Autism Awareness Day. In light of this, many articles about autism around the world are beginning to circulate on the web.

I just read an article on reuters.com (here: http://www.ninds.nih.gov/disorders/autism/detail_autism.htm ) about Autism in China, that talks about how it has only been recognized as a disability since 2006 and parents struggle to find answers and the methods to help their children thrive.

I was expecting shocking news in this article, but these same stories happen here in the United States every day.

From all of the visibility Autism seems to get in the media, one would think awareness here in the US is much more prevalent than anywhere else, and maybe it is, but it isn’t enough.

Until parents are heard by the medical community instead of being rudely dismissed, until medical professionals actually pause and read the diagnostic criteria, until kids are raised to respect differences, and adults who should know better start thinking before they speak & judge and start listening, then the little awareness that we have in this world is nowhere near enough.

April is Autism Awareness month, in support of this I will be writing more frequently about some of our family experiences, personal experiences, and things that have helped us along the way.

Until later, please google… If you are not directly involved in raising a child with ASD, and are curious about what some of us face every day, I definitely suggest google, reading local news articles- including the comments…The comments on most online articles, from major news services, are most telling about what families and children experience and how much more awareness is needed.

Hugs all around,

Bek

ps. there’s a tag could on the right side of this blog where you can click on a tag to bring up all of my blog entries…

(ie… blog entries relating to ASD)

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