Aiden's Journey

One Little Boy's Battle with Dravet Syndrome



Posted by Nicole on May 1, 2011 at 3:02 PM Comments comments (1)

There’s a sliver of space between reality and the world as we perceive it that is so small that you sometimes forget it exists. It can expand, of course, but for most of us it waits in obscurity, swallowing the thoughts you feed it like a black hole, keeping them squirreled away in its cavities until you stumble upon the crack and it trips you, causing you to question on which side reality truly resides.


My thoughts tend to settle on how Aiden is different from other kids his age, no matter how his day has been. I don’t mean for it to happen, and I don’t wallow in them – Half of the time I am pleasantly surprised at how easy it is to celebrate these differences. How precious is the fact that this giant 45 lb creature still thinks he’s a lap dog? He’ll curl his long limbs up underneath him, not noticing how they stick out on all sides of my small lap, nuzzle his cheek to mine, turn the corners of his mouth into a dreamy dazed smile, and settle in, completely oblivious to the fact that our heads are at the same height, I can’t see around him, and my thighs instantly fall asleep under his weight.


He is so excited to see his brothers at the end of the day that he stumbles out of the stroller, clods over in his light-up Spiderman boots (though it is nearly 70 degrees outside), and gives the 9 year old a big bear hug. If the 9 year old’s friend happens to come out of school first, well, he receives the same bear hug and smiles out of surprise while looking around to make sure no one else has taken notice of this embarrassing fiasco.


I love his differences, and they’re fairly easy to spot even without knowing he suffers from seizures. But then that crevice between reality and what I perceive to be reality comes up and I question my own sanity. Obviously he has special needs – I’m not blind. But how significant are those special needs? Do his charm and easy-going nature fool others into thinking he’s not as needy as he truly is? Do they fool me? I observed him during preschool one day with a few other school district team members in preparation for next year, and could see them breathe a sigh of relief at how easy he seemed to be to educate. He skipped along through each activity with a team member’s help, never putting up a fuss, complaining, or needing medical attention. It was too loud to hear him talk, so he honestly looked like any of the other kids in the class, if perhaps a bit less stable.


But then, what are “significant” special needs? Emotional/Oppositional behavior? Inability to relate to others? Medical needs? Severe learning disabilities? I guess I don’t know. My perceived reality is that someone who is dependent on me for every daily function (getting dressed, feeding, breathing sometimes, toileting, even getting in the car) has “significant” special needs. The fact that he, if left to his own devices, would walk around stark naked not because he thought it was funny or more comfortable like any other 5 year old, but because he truly doesn’t understand the necessity of clothes, even in the dead of winter, seems to be significant.


Perhaps I’m with him too much to truly know. Maybe I’ll just step right on top of that sliver of space and force it back into oblivion. Life is a lot less confusing when you convince yourself you’re sane.


Posted by Nicole on March 11, 2011 at 10:38 AM Comments comments (3)

I've got nothing this week. Too many seizures, no answers, and a big old fight from Colorado Medicaid on two fronts (stiripentol and school nursing) have got me beaten into submission for now. I'll be back with some witty story about our crazy new dog or our adventures in explaining to pharmacists (doctors of pharmacy!) how to use and order the emergency meds Aiden needs, but for now I'm just tired of it.


p.s. And to the people who were complaining this week about the "uselessness" and "inappropriateness" of the school district's placement of their children in the special needs inclusion class:  That class you think isn't good enough for your child is the exact one mine can't even get into without my attending alongside him because they can't handle his medical needs. So no, I don't think the district should pay for your child's private school placement - I think they should hire a nurse so mine can even access that classroom you turned your nose up at. There. I said it.


p.p.s. And you, parents who were upset that the teachers mentioned the need for 7th grade shots to the class before you had a chance to calm your anxious child: Seriously? Is that all you have to worry about? I have very little sympathy for your "24 hours of hell" because your child was scared for their shots, and do not agree with you that the teachers should be reprimanded. They're doing their best and have a lot bigger fish to fry - give them a break!


My Little Lab Rat

Posted by Nicole on February 16, 2011 at 10:59 PM Comments comments (3)

In the never-ending experimentation we perform on Aiden daily in regards to meds, treatments, and routine modifications, here's the latest:


To qualify for a Medicaid nurse in CO, which we're working on for school next year, he needs to show dependence on oxygen (desatting below 85% within 15 minutes of removing the O2) or tube feeding necessities, for "shoo-in" private duty nursing qualification. So where does that put me? Sitting on his bed with his O2 turned off, hoping (?!?) he desats within the 15 minute time frame. So far he's gone down to 85% once, but that was 20 minutes after falling asleep.  Damn!


How crazy is it that they won't provide nurses for "monitoring" or "in case of emergency" (which, quite honestly is about one out of every three days he attends school, for the measley hour and a half he's there), but will provide nurses if O2 is required. As if that's a difficult task or requires skilled nursing judgement? 


1. Open tank.

2. Attach tubes to nose.

3. Sit and read a book. 


Why is a nurse necessary for those steps, but not for the administration of emergency medication or for judging whether he's even having a seizure?  Why do they (Medicaid) not consider judging whether a child is having a seizure or not a skilled nursing task?  They can be so subtle, and people without a medical background don't even recognize them, yet they're dangerous!


Shoot - there goes my 2nd 15 minute window, and the lowest he got was 91%.  Guess what, Medicaid:  In the hospital, they'd put him back on O2 for 91%.  Just my two cents.


Thick Skin

Posted by Nicole on January 28, 2011 at 6:43 PM Comments comments (4)

Here's what they don't tell you in mother training: The compliments you'll get as you move through life raising a child with special needs are not what you would have hoped. Oddly, the more you don your mothering hat, the less you'll care. (It's more than a hat for special needs kids, though... More like full body armour complete with a sword and shield that lets more through than one might think.)


Today was Aiden's official IEP meeting for Colorado.  The second one, to be fair, as the first resulted in my realization that this was going to take some time for my requests to sink in.  I was as prepared as I could be for two main fights (and a lot of minor, nit-picky ones): 1. Getting a nurse in the building next year so Aiden could attend kindergarten without his mother, and 2: Ensuring he received speech and/or occupational therapy in a 1:1 setting instead of incorporated into the classroom for at least part of the time each week.


It went well!  No, I haven't signed a thing yet, but we are making progress.  They are not accustomed to providing any type of 1:1 therapies to kids in preschool out here and have touted their "inclusive" and "integrative" settings until my ears were about to fall off.  I fully support both inclusion and integration! It just so happens that he had BOTH integration and 1:1 therapy in Minnesota, and that is the most appropriate way to do it for him. Period. The good news is that they "gave" a little on that front, and I hope they will do so for other kids who will benefit from a mixture in the future.


The nursing for next year is coming along... There is a lot left to figure out, but I was able to get the need for a more appropriate health plan than the present "DCS is not responsible for any medical care while Aiden is in preschool: Mother will accompany him and provide all necessary medical intervention" stated clearly on the IEP. And the county nurse agrees he needs a nurse next year, so that's good.


The meeting was 2 hours long - shorter than some have been in the past regarding Aiden. And I think some of the team members were exhausted by the end. Me? Not a bit. Because even arguing politely for 2 hours is infinitely more relaxing than caring for  seizing child, and that is my fulltime job.


So when the meeting wrapped up in favor of continuing the discussion on Monday, and I apologized for being such a pain in the neck, they said what everyone does: "Don't apologize. You're being his advocate." I really do appreciate their understanding and politeness. But truthfully? I kind of wish I didn't have to "be his advocate," teacher-speak for a parent who's always ready for a fight. That I could be complimented on the sets I helped paint for Owen's 3rd grade performance last night. Or that someone could say, "Alec's mom - she's such a sweetie!" (For the record, I din't lift one finger to help Owen's class performance. And no one in Alec's class even knows who I am because I am always with Smoochie Face, thus not one of the "helpers." I wouldn't even recognize their teachers in a lineup, not to mention the other parents who organize, volunteer, and pitch in to make their schooling a success.)


Mothering a special needs child is fulfilling, but someone should warn you before you start that the thick skin you're inevitably going to grow isn't going to be pretty, or soft, or feminine. He needs me to push past my level of comfort, and I do. It just doesn't always endear me to the few adults with whom I interact.

People used to call me sweet...

Posted by Nicole on January 7, 2011 at 11:03 PM Comments comments (3)

I try not to be that parent, I really do.  You know the one.  The woman who saunters into your student's conferences 5 minutes late for a 10 minute conference and demands to know why her genius child isn't getting an A in your class.  It can't be because he doesn't do his homework, because you should be teaching everything he needs to know in class and homework is really just for the slow kids to do anyways, right?  Regardless, that parent would like to know what you're going to do to move that D+ up to an A by the end of the semester.  In two weeks.


I succeed in the older boys' cases, I think.  (Let's ignore the little busing situation earlier this year when I argued about the parent drivers for the field trip despite there being no other option and call it even, okay?  Thanks.)  I let them screw up, and explain why their scores maybe weren't as high as they could have been.  I urge them to do their homework but don't complain to the teachers when I think it's busywork or just very poorly designed.  (Did you catch that arrogance?  Wink.)


But I'm afraid when it comes to Smooch I pin my ears back and the claws come out.   This Monday, for example, I apparently reamed the director of international shipments at Fed Ex for an error that was, in fact, not theirs to begin with.  (They definitely screwed up, but the error started with the shipper in France.)  And when I say reamed, I mean yelled at the top of my lungs, "No, Angela, you didn't do your best to deliver the package.  You did a mediocre job, quit trying, and NEVER TRIED TO CONTACT ME.  I need that package in 7 days' time, or my son will be in the hospital seizing constantly because your company failed to deliver a package marked "URGENT - Medical" and sent it back to France.  It'll be on your shoulders."




Did I really say that?  I have it on good authority that I did.  My almost -9- year old recited it back nearly verbatim, and informed me the entire elementary school heard it, too, because I was on my cell phone having walked them to school.  Whoops.  I'm sorry about that, Sweetheart.


I'm going to blame it on stress.  But aren't we all stressed out about something?  I don't see you running around yelling at people on your cell phone.  What is it about this fight that seems so unjust and makes me such an unpleasant person to deal with when things go wrong?  I think it's the rarity of the syndrome.  It's like every piece is new to whomever you're dealing with (the doctors who are surprised that someone with epilepsy needs to be followed by an orthopedic surgeon, or the people at FedEx who don't understand why you can't just run to Walgreens if he's almost out of meds).  They don't seem to get that every single piece of his care is a fight, because so few here have followed the same path. 


To Angela's credit, she did inform me where the package was every day at 8am sharp.  And they must have pulled some serious strings to get it out of French customs, shipped to the US, through US customs, and hand delivered to me today, Friday, at 10:30am, a process that usually takes exactly 22 days.  Sadly, the squeaky wheel does indeed get the oil.


I could say that I'm going to be a better person next week and keep my mouth shut and my claws retracted.  But I'm not.  Because next week is kindergarten registration, and he can't go to kindergarten until there is a nurse present in the building, our next hurdle to cross.  (Did I say hurdle?  This one is going to be more of a high-jump, without the help of a pole.)  Would it suffice to say I'll be calmer, though just as stubborn?  I think that's the best I can do for the foreseeable future!

My Christmas List

Posted by Nicole on November 28, 2010 at 10:44 PM Comments comments (1)

It’s your lucky day! Had you seen my original entry today, you’d have been down, depressed, feeling like there’s no hope… you get the picture. But fear not, gentle reader, I am back to being positive tonight. You know how sometimes you open your mouth in what seems like pure honesty, and then just a few hours (or minutes) later you wish you could suck those words right back in? Today I actually had the will power to put the computer down and not say things I’d certainly regret tonight.


Let’s keep it to this: My Christmas list. Infer from it what you may, and imagine the 1200 words I had written on items 1-5 earlier today.


1. Bedtime. All of my children in bed (to stay!) at a reasonable hour (8:00? 9:00? I’d even take 9:30.)


2. An angel to potty train Aiden. I tried again the other week to no avail. Obviously not blog-worthy, since success was not to be had.


3. Preschool. You know, the normal 2 hour break moms of young children aspire to, “one day,” when their youngest finally makes it there. Not the breaks our family members give – those are great but always make me feel guilty – the honest, deserved preschool break.


4. An insurance company who’ll listen to the patient and not hide like cowardly sniveling rats behind their “policy.”


5. An angel to handle the medical bills. Not just to pay them (that’d be great!), but to go through them with a fine toothed comb and figure out which ones are our responsibility, which ones were misprocessed, which ones should have been paid by insurance and were not, which ones apply to our current out of pocket maximum, and which ones apply to our old insurance’s out of pocket maximum.


6. A day without seizures, big or small. (A longshot, but it’s worth a try, right?)


I will fight the good fight, both with insurance and with school tomorrow, and Andy put Christmas lights on our fence in the backyard like I had hoped, so all is good… now. Let’s give a toast to the old rule of “counting to 10 before you say something you might regret,” and be thankful for the life we have.   

When you feel the need to sweep...

Posted by Nicole on November 9, 2010 at 11:39 AM Comments comments (2)

I’m often surprised by things I shouldn’t be, knowing Aiden. He is such a creature of habit, clinging to familiar situations and phrases that have been repeated over and over because his mind is not exactly present all of the time, and often misses things if they’re stated just once. Yet his mannerisms are so odd they’re almost predictable – the random kick in the shins to Andy, the Iron Man laser blasting of Home Depot workers as he rides down the aisle in the cart, and the well-placed “Dirty Hoe” just when you thought he wasn’t listening.


I expect them, for the most part, but then he’ll do something that just solidifies all of the craziness that’s going on in that storm of a brain of his, and I remember he’s not dealing with the same deck of cards we are. His deck is more like 7 decks jumbled together, jokers and all, constantly in a state of shuffle, and you never know which card you’re going to see… though it’s often either the Joker or the Jack of Hearts.


We were taking a tour of another potential preschool the other day, and as the teacher called the group of kids over to her to work on the letter H, Aiden stayed in his free play corner. The other children were so excited to shout out words that begin with the “h” sound – “Horse!” “House!” “Hospital!” (Though I’m fairly certain whoever shouted that out is not nearly as familiar with the interiors of hospitals as Aiden is.)


The coordinator, Lexie, and I stood in the corner by the door watching 12 children gather around the teachers, making sure to clean up their toys as they went. Aiden, however, was not interested in group time, and continued making the same pot of coffee over and over as everyone else honed their alphabet skills, which was not a problem in and of itself. Untill he started sweeping. The wall. As in, with a broom. He proceeded to sweep the wall, up near his head, for the next 5 minutes.


I didn’t want to glance at the coordinator’s expression, though I’m sure it was something of a puzzled look – even mine was, and I expect things like this from him. He shows such promise, such common sense, such maturity at times…. And then you get a glimpse of those shuffling cards up there and the joker peeks out, and you realize how many impulses he must fight off just to appear relatively normal.


I love that he’ll make me coffee every time he sees a pot, even though I’ve never had a cup of coffee in my adult life. I love that he calls people dirty hoes and they have no idea what he’s said. And I love the effort he puts in to life – so much harder for him than for 95% of the children we encounter.

Blue Skies

Posted by Nicole on October 1, 2010 at 11:50 AM Comments comments (1)

We’ve officially been Colorado residents for 7 days now, and I think we’re adjusting pretty well. As expected, there are bonuses and drawbacks, but we’re just glad to be experiencing something new. I feel more alive than I have in years.



Blue skies... every day, framed by Aspens


The two greatest bonuses so far seem to be the weather and the views. Thanks to the never ending deep-blue-not-a-cloud-in-the-sky days, I get to walk Owen and Alec to and from school each day. (Aiden’s photosensitivity rears its ugly head most on cloudy, white-lit days, which there seem to be very few of here!) I never thought I’d be able to walk the boys to school after the first few days last year in Minnesota, when even taking him to the bus stop in the morning landed him in the hospital with nonconvulsive status eptilepticus. It is such a blessing to listen to them pour their hearts out on the way home instead of watching them come bounding off the bus at our driveway, headed straight to the kitchen for a snack.


Photobucket    Photobucket

This is what we see as we walk to school



Which brings us to the other greatest bonus: The views. I wake up, put Aiden in the stroller, and experience this awesome scenery as we stroll to school. I can’t think of a better way to start the day. (Ask me again this winter, when it’s cold and snowy, and there is no bus service for our neighborhood thanks to extremely low taxes, and I may want to retract that statement.)



The view from our backyard - we didn't know it when we bought the house and were pleasantly surprised on move-in day!


We’re going to climb a real mountain tomorrow – a little 3 mile hike do-able for kids (and parents with 45 lb Smooches on their backs), which will undoubtedly bring more inspiring views.


Of course, there are some surprises and drawbacks, too. We love the low taxes…. But can clearly see where our money went in Eden Prairie! As mentioned, there are 4 buses for the entire elementary school. Our neighborhood is not offered service. At all. And when they head to middle school, their bus stop will likely be 2 miles from home. (Seriously? At that point, I might as well drive them all the way.)


Aiden’s preschool is nowhere near as comprehensive as it was in EP. I am nervous about him starting and have some advocating to do before that happens, since there’s no nurse on site, he doesn’t have a 1:1 aide, and there are no extra rooms he can go to when he’s overstimulated and his eyes flutter. They say they’re experienced with seizures, and I’m sure they are.  But we’re in the business of seizure prevention here – not seizure response.




No alert on this seizure... But still a perfect response, complete with kisses :)


And, of course, some things never change. He had his first big seizure in CO on Monday. It was a nice stretch there, being able to say, “He’s never had a big one in this house! Or even this state!” for 5 days. Oh, well. If you have to deal with seizures anyways, you may as well enjoy the view and relax in the amazing sunshine while he recovers, right?  8)

The Blizzard

Posted by Nicole on February 5, 2010 at 10:59 AM Comments comments (1)

While perspective is a wonderful thing and sometimes we are granted instances of clarity and can appreciate it, I spend most of my time lost in a blizzard not knowing up from down. Seizure meds are not like blood pressure meds or antibiotics, which give a clear answer as to whether they work or not. And Dravet Syndrome is not like other diseases or disorders that run a “typical” course. It’s rare and a recent discovery, so there is no “typical” course. I feel like I’m still a scientist running one great big experiment on my child, desperately manipulating variables trying to make sense of the situation, trying to create some semblance of a future for him.


A literal blizzard, and Aiden, King of the Hill.  His brothers are such good sports. 


Aiden had a particularly bad day recently – one that would have been entirely ordinary a few months ago, but given his recent advances was considered a setback. (That feels good to write!) Andy mentioned he gave him a cup of orange juice the night before with his meds – did it cause his stomach to be too acidic and the meds broke down and didn’t keep the seizures at bay the next day? Who the heck knows? So, naturally, after a couple of “good” days again (and no orange juice), there I was at the blender trying to make him a cup of O.J. at bedtime to test the theory. My always-rational husband turned to me and said, “Honey, what on EARTH are you doing? Put down the oranges,” and only then did I open my eyes and try to see beyond the white haze in which I live. There’s always something we’re experimenting with, and the answer is never clear. It reminds me of my days in the laboratory.


People imagine research and development as this series of experiments, each of which produced some “result” that got us closer to the product… But it wasn’t like that at all. Most of our experiments were inconclusive, and it took running a similar one 15 times and statistically analyzing the results to see that, sure enough, 10 out of 15 times there was a slight trend worth noting that wasn’t even obvious as we ran the experiments. What happened to those other 5? I have no idea. It may seem like there are only 4-5 variables to mess with, but in reality there are a million: air pressure, humidity, manufacturers’ variations in test materials, etc. (Sure, he’s only on 3-4 anti convulsant medications, but think of the millions of other variables in his environment, immune system, diet, age, etc.)


Then again, occasionally the blizzard lightens and we see the world in which we’ve been living and are shocked at its heavy blanket of snow that seems to have appeared all at once. The county health nurse came and assessed Aiden for home care services yesterday to determine how much help the state thinks we need to keep him at home and out of an institution. (Don’t worry – there’s no chance of that happening – it’s just the benchmark they use to assess disabled children and offer support for the people raising them.)


I’ve answered the same questions a million times before: “Is Aiden toilet trained?” “No, although he was last year.” Her face falls as I explain what happened. “Can Aiden brush his teeth?” “No, but he can suck the toothpaste off the toothbrush like a champ. And he can smear it on the sink – some of his toothpaste artwork is upstairs as we speak, in fact.” The answers don’t seem that bad to me – the blizzard has at least dulled my senses, and I see these as pretty normal things. I can even picture some kids I know doing the same thing… Until I realize I’m thinking of 1 and 2 year olds, not the kids his age getting ready for kindergarten next year. It turns out if you evaluate him as if he were a 1 ½ to 2 year old, he is pretty normal. It’s just when you lay those difficult tasks 4 ½ year olds are supposed to be doing on the table that his mental disability rears its ugly head. “Aiden, what’s your name?” “Aaiiiyyy.” “So can he communicate with strangers?” Well, not exactly. “Does he have any safety related concerns aside from the seizures, which require medical attention?” To which I reply, “Is this the category into which something like trying to eat a burning lightbulb would fit?” She got a puzzled look on her face – she sees and hears of a lot of behaviors, but I think this may have been a new one.


So after she “interviewed” him and pulled out the calculator to tell me how much home care we should be receiving, you can imagine my shock as she said, “10.5 hours.” That was close to what I had figured per week, until she said, “per day.” 10.5 hours per DAY?? How can that be? This is my job – I am his mother. How could I need help 10.5 hours out of every day? I wouldn’t even know what to do with myself for 2 hours a day, not to mention 10 hours.


She was very nice and explained that I should see it as a compliment, since I’ve been doing this on my own (with a lot of help from Andy and grandmas!) up until this point. She talked about how the other children need me, too, and laid the figure of how much it would cost the state to care for him if something happened to Andy and me. That thought almost had me in tears, because I know that people who love him would take him in and learn to care for him just as we have (it’s not rocket science after all), but my heart breaks thinking of him going through all of the experiments we’ve run on him, AGAIN.



The view when the snow lets up for a minute and we see how entirely encased in white confusion we are.  p.s.  Thank you to whoever snowblowed (blew?) our driveway this morning!


So I was granted a bird’s eye view of this snowstorm for a minute yesterday. It turns out we are, indeed, headed in the right direction, and we may be getting a little help in the future, but there is still no consensus on where exactly we’re going. Our destination isn’t clear – It could be Holland, could be Russia, or the North Pole. For now, my head is bent down again and I’m just trying to keep us going in a straight line. I may try to write some of our findings down, though, so someone following this journey at least has a bread crumb trail for a map, even if it is buried in the snow!

ABCs, 123s

Posted by Nicole on January 29, 2010 at 2:13 PM Comments comments (0)

Do you have any idea how many letters are in the alphabet? If you guessed 26, you’re way off. There are 52. Why on Earth do we have to have a DIFFERENT letter for the uppercase and lowercase version? I mean, really, can’t we just write the first letter of the sentence a little bigger than the rest and call it good? I think there’s even a font you can choose to do this on the computer, so it’d be no problem. Whoever invented the whole uppercase/lowercase thing should be strapped to a chair and spoonfed cold, gelatinized Spam.


You know, teaching a child his letters before school does is a huge undertaking. For Owen it involved hours of dump trucks, car transporters, and wooden letters from the alphabet puzzle. The trucks had missions: “Green Cement Truck, Can you please deliver letter “D” to his home?” “Car Transporter, we need a pickup of Letter “S.” Alec played along, too, but did the numbers at first. Once Owen had moved on to the lowercase letters, Alec was ready for the uppercase ones. It was pretty rewarding, and they played along well.


As you can guess, it’s a whole different ballgame with Smooch. We’ve been working on letter A for about 2 years now. Seriously. 2 years. And don’t get me started on the lowercase version, which looks nothing like the capital A. I’ve sort of given up on colors for a while, since they’re: a. really not that useful to know anyway, and b. apparently too difficult for him to distinguish right now. Letters - That’s where it’s at.


You’d think it’d be easy – A is always the first in line, there are plenty of examples, and it’s rather striking looking, resembling a tent. But things are never easy for him. I’ve resorted to saying, “Up, down, Letter A for Aiden” every time I see one or draw one. His teachers are going to hate me when they try to teach him to write, starting at the top, since he only knows it from the bottom up.


He wants nothing to do with the missions and dump trucks of days gone by. At school I try to act like the other parents and ask him to find his name on his locker. Except I have to stand in front of one locker with my arm awkwardly reaching over to another locker, since a few of the kids' names near his also start with letter A. Do you think they’d notice if I just relocated them to the other side of the hallway one day? There’s just no way he’s going to get that for it to be “Aiden,” there has to be an i (LOWERCASE, too!) after the A. This is just ridiculously complicated, in my opinion.


Seriously, the thought of teaching him all 52 letters makes me want to reach for a glass of wine, and it’s not even noon. Thank Heavens for school! At this pace Aiden will know his ABC’s by the year… 2114. Then we’ll try those elusive colors again :)

The wooden chair

Posted by Nicole on January 5, 2010 at 10:45 PM Comments comments (2)

As we look ahead to the new year and I think about what we’ll learn next year, I can’t help but think about how far we’ve all come. Andy will probably agree that we both used to judge a lot more based on appearance than we do now. Take Smooch this morning, for example. If you saw him when he woke up this morning, you may question our parenting abilities or wonder what exactly we did to him.




This is what I awoke to – his burned lips had broken open in the night and dirtied his bedding and face. (For the full story, see “Medical Updates.” Or just know that it involved trying to eat a lightbulb. While it was still in the lamp. And was on. And had been for hours.)  Where do you start cleaning this kid up?  His Vaseline-ridden hair, the mismatched jams he insisted on wearing, or the obvious face issue?   I don’t know exactly how Aiden ended up here - I can’t quite pinpoint when he slipped off the “typical” pathway and onto the “special” one.


All I know is that I woke up one day a couple of weeks ago, dressed us, took him to speech therapy, and it hit me like a ton of bricks. (Why does this surprise me? It happens more than I think it should.) The speech therapist walked us back to the room (or more precisely, followed Aiden with arms stretched out to catch him as he stumbled to the room like a drunken sailor). She turned off the fluorescent lights, turned on the little lamp she has in there specifically for him, and pulled up his usual chair. That’s when I did a double take. You see, his “usual” chair is this odd looking padded wooden and metal contraption with a huge table that locks into place and thick industrial strength belts to strap him down. Upon first glance, it resembles some sort of medieval torture device. (I’m thinking the Princess Bride here…;)


When he first started therapy there, he was 2 years old and really not entirely different from other children. He wore glasses and required the lights to be off, but other than that he was fairly typical. He sat at the little table with his small legs swinging below him on the regular chair, played games with her, did flashcards, etc. His attention span was pretty good, and 30 minutes went by quickly. I admit it: I noticed the wooden torture device in the corner of the room and was horrified at the thought of its use. What children needed that awful looking thing? I figured it must have been for those who couldn’t sit up by themselves and needed the full back support, the locking table, the straps, and the pads because they had no control of their bodies. Maybe it was just leftover from when the room was used for feeding therapy. Or maybe it was for the children who were so behaviorally challenged that they kicked and screamed when it was time for speech therapy. Regardless, I was grateful for my sweet child playing Bingo at the regular table.


I think Aiden actually decided to sit in that chair one day on his own, and we just didn’t argue, figuring it was merely a curiosity thing. Otherwise that day would likely be seared in my memory as “the day we forced him into the chair.” But he decided to sit in that chair every day thereafter, and on the day a few weeks ago that I mentioned, I suddenly realized he’d been in it for almost a year, and it had become entirely necessary. I secretly love that chair and have contemplated buying one for our house. What would guests think?


It still looks like a torture device. But you know what? When he’s sitting in it, his back and sides are completely supported, his legs are kept still, and he doesn’t have to worry about trying to balance himself. Can you imagine having that be a concern every day, all day long? I wonder if he felt immediate relief when he plopped his little body down in that chair for the first time, or if he just gradually got worse all year. He has so much more on his mind than I give him credit for – just trying to keep himself upright is stressful, not to mention trying to do that and concentrate on speaking (his hardest task) or eating or – gasp – walking.


I wouldn’t dream of just sitting him down on the mini-sized regular chair at the table in the room anymore. He’d be so overloaded sensory wise that we would get nowhere with his speech. Not to mention the fact that I’d likely have to sit next to him to keep him from falling (or more accurately, launching himself) off the side.


He overcomes so much more than even I realize each day. I suppose it’s like diapers: this is another thing that, though I cringed at the appearance at first, helps him and his daily, sometimes underappreciated struggles. I guess appearances just don’t matter like they used to.  Thank Heavens for that on days like today!


Like I said, I can’t pinpoint exactly when he slipped off that typical path… But we’re here now, and it’s actually kind of pretty. The things that look like weeds and thorns at first along this path (the wooden torture chair) have turned out to be flowers in this strange new world, if we just look closely enough. I wonder what else I’ve written off based solely on appearance. I’m sure I’ll find out in time – this is quite the journey, for all of us, and we’re ready for another year.

"Well-Child" Visits

Posted by Nicole on November 22, 2009 at 10:12 PM Comments comments (0)

It seems like forever ago. I used to plan for them far ahead – made sure I had extra diapers for after the weigh in, toys for the wait, Tylenol for the shots, etc. I mean “well-child” appointments, of course. The one time when the doctor was there to make sure nothing was wrong, compliment you on your beautiful baby/toddler/smart preschooler, chart his growth, etc. When we got there I would spend a few minutes filling out the developmental checklist, which was really just a sheet of paper reinforcing how advanced my children were. I mean really, What 12 month old can’t roll over, for Heaven’s sake? Are there honestly 4 year olds who can’t feed themselves with a fork? Who WERE these children that made average seem so far behind my genius children?


Ahh, how the tables turn. For a while it wasn’t so bad at Aiden’s “well child” appointments. (I realize now what an ironic statement that can be. The doctors must have figured it out, too, because I notice they call them “preventive medicine visits” now. There should have been a memo on that one.) He missed a few milestones here and there, but nothing too worrisome. We knew his speech was behind, but he had two older brothers talking for him – why bother speaking himself?


So I got to Aiden’s 4 year appointment on Friday morning and started filling out the developmental checklist. The receptionist is kind enough to highlight the appropriate age to start at based on your child’s age (and she graciously starts about 6 months behind just in case you have one of the… late bloomers). She draws a neat yellow arrow up to indicate you should check off all boxes for things your child can do, moving on to the next age as appropriate. Owen and Alec always measured at least a year ahead of those so-called averages.


I started at the yellow line: 4 years. I did not check off one box. “Okay,” I told myself, ”No problem. We knew he had a tough year and is developmentally delayed.” I moved below the yellow line: 3 yrs, 6 months. No boxes. “That can’t be. Are 3 ½ year olds really supposed to be able to dress themselves with help?” I moved to 3 yrs. No boxes. And down to 2 ½ yrs. Here I was able to check one box (One! Out of 7!) It was for pedaling a tricycle.


At this point I figured they must have changed the paperwork since I had been there last. The things they were expecting 2 ½ year olds to do seemed ridiculously advanced. Surely my older children couldn’t stand on one foot for 2 seconds at age 2 ½. Could they? Or draw an “L?” I’m certain they learned that in kindergarten. I can’t quite remember when they learned to button buttons, or put their own socks on, but it seems like it was yesterday. And I definitely don’t remember showing them how to do it more than once. Where have those little creatures gone?


In addition to the checklist was a questionnaire. “What are your child’s strengths” (Answer: Affection.) “What are his/her weaknesses?” (Answer: Sour Patch Kids and mmm-gulp. (See “Dad’s Take.”;) “How are you doing as a parent?” (Answer: Very well today, thank you!) The nurse laughed at my comments. What else can you do? We spent the next hour with the pediatrician explaining his complicated year and why he can’t find the black market imported meds Aiden’s on in his computer. As in, they’re not there. Period.


I’m not sure why I was surprised by the visit. I know he functions at an 18 month to 2 ½ year old level. But seeing it on paper was tough – as if he was being graded on his skills. I can only imagine how parents with more severely delayed children feel. And now I completely understand why the average always seemed so low for Owen and Alec. It is just that: an average, and I have 3 exceptional children. They just happen to be on different ends of the spectrum. How blessed am I that I get to experience both sides? Perspective is an amazing gift. I have been blessed!