I was reading a friend’s blog recently – another parent who has a child Finn’s age with Down syndrome. In this post she recounted how they recently started with a new physical therapist, and this therapist, upon meeting them for the first time, wondered aloud why my friend’s child isn’t walking yet, and thereafter emphasized the importance of “getting him to walk as soon as possible.” I was appalled reading this, and it brought back memories of our own experiences with physical therapy, and how Finn’s therapist was so determined to get him to walk as soon as possible – so determined, in fact, that she would put weights around his ankles, hold him up by his hands, and make him “walk” laps around the living and dining rooms while he cried. It was torture to watch, and every time I expressed concern about this method and about her goals for him, she reiterated to me that if I wanted what was best for Finn, if I wanted him to “reach his potential,” then I had to take a tough approach. Eventually it became too much, and it also became clear that my goals for Finn and her goals for Finn were not in alignment with one another, so we dumped PT altogether. After a lot of reading and soul-searching, I decided that it just didn’t matter to me when Finn walked – that he would walk and do everything else in his own time, and physical therapy wasn’t going to change that.
Still, we did brief stints with speech therapy and occupational therapy after dumping PT. At the time, I was extremely concerned about feeding issues Finn was having (namely, a pretty severe texture aversion, a pronounced gag reflex; because of these issues, at 18+ months old he was still strictly on purees), and yes, his lack of communication skills. And I thought therapy could possibly provide the pieces to these puzzles that I was so obviously missing. It became clear pretty quickly, however, that neither of these therapists were engaging in rocket science; in fact, they really weren’t doing anything at all that we don’t already do with Finn naturally.
So when the State of California, in its current economic crisis, changed accessibility to early intervention services and began mandating that families seek services through their health insurance carriers first, I saw it as the perfect out. Out of early intervention. No more therapy for Finn. Done. Finito.
It’s been a couple of months now since Finn has had any formal therapy, and I have not looked back. He has continued to make gains in all areas – gross motor, fine motor, and communication – despite no longer being the target of therapy.
How is this possible? How is it that he has figured out how to pick up a step stool and carry it around the house, placing it in strategic locations that allow him to climb and retrieve objects he couldn’t otherwise reach? How is it that he puts a toothbrush in his mouth and (rather clumsily) mimics brushing? How is it that he grabs a comb from the bathroom counter (reached by way of said step stool) and tries to comb his hair? How is it that he hears music and is instantly moved to dance? How is it that he places a hat on his head and grins, knowing exactly how amusing he’s being? How is it that he says, “okay” when told to do something (sometimes . . .), or “uh oh” when he drops something? How is it that he tries to do the finger movements to Itsy Bitsy Spider? How is it that he eats a PB&J sandwich like any other kid?
I’ll tell you how: he’s a kid. He learns by observing, like any other kid. He learns by being given opportunities to succeed (or fail).
Therapy is grossly overrated. I know this is a wildly unpopular position to take among parents of kids with Down syndrome, but that’s my take. A whole industry has been built around services and therapy for kids with Down syndrome. They all seem to feed on parents’ deepest fears and hopes for their kids. We, the parents, are told from the time of our tiny babies’ diagnoses that if we want them to reach their full potential, this is the path we must travel. The unspoken message is: if you want to be a good parent, this is what you need to do. And what do we know? We’re shell shocked by the diagnosis. The rug has been yanked from under us; suddenly we have a baby we feel we know nothing about (this certainly isn’t the baby we had hoped or planned for!). And we just want, more than anything, for everything to be okay. We want to feel like we can get a handle on this whole Down syndrome thing. So we listen to the “experts” (very few of whom, by the way, are parents themselves of children with Down syndrome), even when it sometimes means decidedly not following our hearts, and we allow ourselves to get sucked into the whole early intervention way of life.
I call bullshit on it. Therapy for babies? It’s silly. And for anyone who believes in the power of therapy – how do you quantify it? It seems to me that it’s like trying to teach a one-year-old how to ride a bike. You can spend hours and hours, weeks and weeks, months and months, trying to get that baby to ride a bike, but until his body and brain mature to the point where he has the right synapses firing and the right mastery of motor planning, he’s just not going to have the ability to ride that bike. It can’t be taught before the student is ready to process the information and act on it. And eventually, three, four years down the line, that child will, in fact, master the skill of riding a bike. So do you then say, “All the therapy paid off! Look at him go!”?
All the hours of our life that we allowed to be intruded upon by therapists during Finn’s babyhood? I wish we had just spent those hours letting him be. I don’t believe any of the therapy he received made an iota of difference in his development. What it did do was cause stress and resentment and guilt and pressure. It didn’t make him sit up or crawl or walk or sing or sign or eat a minute sooner than he would have otherwise, and I am as sure of that as I’ve ever been about anything.
It’s not that I think early intervention is a scam. I know that these therapists really believe in what they do. Most of them are at least fairly passionate about it. But they’ve been conditioned to believe in it, much the same way obstetricians are conditioned to believe that hospitals are the safest places for babies to be born – even if the facts don’t bear that out. Their livelihoods depend on believing in what they do, in the services they provide.
I haven’t studied the history of Down syndrome in a lot of depth, but what I suspect is that at some point, thank goodness, there was a movement whereby it was realized that people with Down syndrome should not spend their lives in institutions, that remaining with the families who loved them would benefit them much more. This must have necessitated people then trying to figure out how to “deal” with Down syndrome, and I’m guessing that’s where early intervention was born. The thinking must have been something like, “With intensive teaching and therapy, we can make them reach their full potential.” It’s certainly easy to see the logic in that.
My belief, though, is that early intervention has played a very, very small part in improving the lives of people with Down syndrome over the last few decades. What, I think, has resulted in the greatest positive impact has been a better understanding of medical conditions often associated with Down syndrome, and therefore better medical treatment, and just plain love and inclusion in regular family life. Opportunities to explore their worlds, and to succeed and even fail (failure and frustration both play a huge part in motivation to attain new skills). These are the things that have turned things around for people with Down syndrome.
I think it’s time for another revolution in thinking about children with Down syndrome. We need to acknowledge, accept, and embrace their differences – yes, they are slower to learn things than typical kids. That’s okay! It doesn’t mean they won’t learn, it just means it’ll take them longer. There is just no need to push a baby with Down syndrome to walk “as soon as possible” or to do anything else. He’ll get there. When he’s ready. Not a moment sooner, not a moment later. Just like any other baby. We need to provide them with the opportunities to explore, to succeed, and to fail. To learn, to grow, to feel valued exactly as they are. We need to have faith in them instead of placing our faith in professionals who can “fix” or “improve” them.
A few days ago Michael announced to me that he had booked an 80-Minute Deluxe Swedish Massage for me at a local day spa with all the amenities. Yeah, he’s a keeper. I was both incredibly grateful (not only did he book it, but the appointment time he chose for me would necessitate my being out of the house during dinner and putting kids to bed – Hallelujah!), and somewhat guilty (did I mention it would mean his having to deal with dinner and bedtime on his own?).
In the end, I threw my cares to the wind, blowing kisses to my offspring as I left the house.
Here’s a recap of my 80-Minute Deluxe Swedish Massage:
Eighty minutes . . . that’s a loooong time. Damn, and that’s a lot of money! Okay, I’m not going to think about that. It’s only money. A week’s worth of groceries. A couple tanks of gas for my truck. Poof, all gone in eighty minutes. Okay, stop thinking about the money!
. . . I wonder how much whining and complaining about dinner I’m missing right about now . . . snicker . . . Ahhhh, okay, get undressed, climb on the table and slip under the sheet. Crap, my underwear are damp from sitting in that puddle next to the jacuzzi! Auuughh! Okay, do I tell the masseur that I sat in water by the jacuzzi, or will that make me seem unnecessarily defensive? Maybe better to not say anything . . . maybe she won’t notice. I mean, it’s not like she’s going to touch my butt. Right?
Oh yeah, and that jacuzzi. That felt so good, just my feet in. Isn’t it weird when you’re in a place like this and some chick comes prancing along all naked? And then it’s like, I don’t want to look, but you can’t help looking because it’s a NAKED person! So you just try to be cool and act like there’s not a naked person in the jacuzzi right in front of you, and they’re all acting like they’re not naked . . . but no naked person today! Thank goodness . . .
Okay, here she is. Smoosh my face into the little donut thing . . . Ahhhh. That feels sooooooo gooooooood . . . . ack, my nose itches. Just ignore it! Oh, look, I can see her shoes through the donut thing! I wonder if she’s making faces up there where I can’t see . . . I bet they do that all the time. God, I wouldn’t want to do this for a living. Imagine some of the people who come in here . . . Stinky, sweaty people. I mean, I’m sure it happens! Can you imagine, you’re just doing your thing, giving a massage, and then the person farts? And then what? You’d just have to go about your business . . .
. . . . Hmmm, I wonder if my legs are stubbly. I should have shaved today instead of yesterday . . . ahhhh, that feels nice. Drifting . . . drifting . . .
DID I JUST HEAR MYSELF SNORE?! Okay, no more drifting. She must have heard that. She’s definitely making faces now. I would be! . . . I hope the kids aren’t giving Michael too hard a time at home . . . snicker, snicker . . .
Ugh, that weird bump on my shin . . . maybe she doesn’t notice it. She definitely notices it. I’m just going to lie very, very still and not think about it . . . my stomach is rumbling. It’s that leftover meatloaf I scarfed down before I came over here. Sheesh. Shut up already! So embarrassing . . . Hmmmm . . . that wall fountain is making me feel like I need to pee . . . focus on the massage. You don’t need to pee, you don’t need to pee . . . uh oh, she’s working her way up towards my butt . . . I wonder if my underwear are dry yet . . . Just lie very still and don’t think about it . . .
I wonder how many pornos have been made with a massage-room theme. Because you just know this setting screams PORNO. I mean, if they can make pornos about doctor’s offices and pool guys, of course there’ve been pornos made about someone going to get a massage . . . Okay, stop thinking about pornos already! Geez.
. . . now the arms . . . ahhh . . . so niiiiiicccceeee . . .
Now her stomach is rumbling! I wonder what she ate . . . I wonder if she’s embarassed . . .
Ahhhh . . .
Shoulders . . . ohhhh, that feels soooo good . . . mmmmmm . . .
Oh my gosh . . . my scalp? Ohh . . . wow . . . that . . . feels . . . sooooooooo . . . gooooooooood . . . Oh my gosh . . . maybe there is a god . . . ohhhhhh . . . chills . . . yes . . . yes . . . YES . . . YES!!!
Ahhhhhhh . . . eighty minutes? That sure went fast.
If you missed the radio interview in which Kevin participated last night, you can still listen to it by going to choicesradio.com. On the right side of the home page, there is a box labeled “Recent Shows;” click on the show entitled “The R-word” dated January 20.
Kevin and Nic (eldest son of Monica of Monkey Musings) did a fabulous job with the interview, talking about their own personal experiences having a sibling with Down syndrome, how that has impacted them and how they see the world, and how it has made them very conscious of the concept of tolerance. I’m very, very proud of both boys. It takes a lot of chutzpah for anyone to speak out and stand up for what they believe in – let alone to do so and be an adolescent, risking alienation and ridicule by one’s peers.
It is extremely disheartening how prevalent words like “retard” and “retarded” still are, despite the current movement to do away with such language. And while it might not be so surprising to hear epithets like these on the playground and in the halls of middle- and high-schools, it’s worth noting that these words fly thoughtlessly from the mouths of adults as well. Parents. Educated, professional people. Politicians. Teachers. Even early intervention therapists. It’s just so easy to slap the label of “retarded” onto anything viewed as substandard, annoying, ridiculous, or distasteful. What people who use this language don’t seem to get, though, is that in so using such labels, they are in effect comparing things, events, people, or ideas which they personally find to be substandard, annoying, ridiculous, or distasteful to a whole class of people who are different by mere virtue of a medical diagnosis and differing abilities. They are, in effect, calling these people – real, actual, living, feeling people! – substandard, annoying, ridiculous, or distasteful. And it hurts – it hurts the people with differing abilities, and it hurts the people who love them.
It’s not just “retard” and “retarded” though. There are so many words the fly around that disparage whole groups of people. Gay. Lame. Idiot. Moron. Those are just a few very common, very popular ones. Words that even a lot of people who despise and speak out against the R-word think nothing of. Maybe I’m just too sensitive, too aware, I don’t know. I just know that I want my kids to grow up in a world where nobody is put down and marginalized because of race, philosophical orientation, sexual orientation, or ability level. A world where every human being, no matter size, shape, or color, is valued. If people as a whole are valued, truly valued, the language will follow. That’s what I think.
Kudos to Kevin and Nic for standing up and speaking out.
A friend asked me last night at Bunco how my blood pressure is. It always makes me laugh (and cringe a little) when I am confronted with the fact that people know things about me solely through my blog. Blogging, it’s a funny thing . . .
Anyhoo, so here’s the skinny –
(If you’re new here, which you’re probably not – you almost certainly followed me over here from over there – but if you are, just a quick recap: I was informed a couple months ago during a routine lady’s checkup (to put it delicately, heheh) that my blood pressure was through the proverbial roof. I was ordered to follow up with my regular doc ASAP, and by way of doing that, it became clear that it wasn’t just a fluke, I actually have . . . duhn duhn DUHN . . . chronic hypertension. Blah. My doctor wrote me a prescription, and upon researching it I found it to be incompatible with breastfeeding, so I requested a different, breastfeeding-friendly medication. And that’s where we left off.)
That new medication sat in my bathroom cabinet for awhile. I couldn’t bring myself to jump off that bridge and commit myself to surrendering to being dependent on prescription medication for the rest of my life – despite my vow to “put on my big girl panties” and get over it already. Would some minor lifestyle tweaks make a difference? What about supplements?
So I began walking regularly. And not just strolling, but putting on my athletic sneakers and “power walking,” working up a sweat and getting the ol’ heartrate up. I committed to eating healthier. I combed the aisles at my local whole foods store looking for anything that proclaimed itself to be beneficial to blood pressure and/or cardiovascular health. I even began eating celery – a lot of it – every day because someone sent me this article.
Sadly, it made no difference. I continued to monitor my blood pressure every day, and it was always high – usually frighteningly high. And in the end, I realized this wasn’t looking good, so I caved and started taking the prescription medication with a heavy heart, so to speak. And that first day, my blood pressure went from 155/95 to 137/74. The proof is in the pudding, my friends.
It’s a little embarrassing to look at that picture and see the desperation in it. And it’s ironic, too, that I was so resistant to being dependent on a prescription medication but for some odd reason, it seemed perfectly okay to be dependent on . . . other stuff. And the other stuff wasn’t cheap! The prescription costs me ten bucks a month. And no side effects! I feel perfectly fine. I guess it was just an exercise I had to undertake to prove to myself that there was no other way.
I’ve continued with the walking – at least four or five mornings a week, and it does me a world of good. It gets the endorphins pumping, and it feels good just to be out and about in the fresh air, alone with my thoughts. And I’ve lost seven pounds!! That is a definite bonus, and one I wasn’t even aiming for. I wasn’t overweight, but I was at the heaviest non-pregnant weight I’ve ever been, and I’ve been stuck there since Finn was born, so I have just been trying for the longest time to accept and make peace with it, and having a bitch of a time. And now suddenly I’m where I was before I got pregnant with the twins seven years ago! My fantasies of a tummy tuck are dissolving as I shrink inside my clothes. And for the first time in a looooooong time, I am not feeling this desperate need to hide in baggy shirts. It feels good.
I had a follow-up appointment with my doctor this morning. My bp was 134/76. He said he’d see me in six months. It’s a deal.
Tomorrow evening, January 20, Kevin will be taking part in a radio interview concerning his experiences and perspective having a sibling with special needs. I hope anyone reading this will tune in and listen to what he has to say. The show can be heard live beginning at 7:00 p.m. PST by going to choicesradio.com.
The host of the show, Teen Talk, is Nicole O’Dell, a woman I got to know when I was active on a large families message board on pregnancy.org. At the time that she and I became acquainted, I was pregnant with Finn, and she was pregnant with triplets. She, as well as many other women from pregnancy.org, witnessed the online account of Finn’s birth and the aftermath, during which we found out he has Down syndrome. Over time, my involvement on pregnancy.org evaporated as blogging and Facebook gradually replaced message boards for me, but several moms I got to know through pregnancy.org have continued to follow me and Finn through Facebook and blogging. It always gives me the warm fuzzies when I realize that any of those women still take an interest in my family and how Finn has changed us all. Nicole is one of those women, and here’s what she wrote about our family on her website concerning tomorrow’s show: The R-Word.
Nicole is a busy mom of six herself (including the triplets, who are now two years old), as well as being a YA author and a radio talk show host. She had Kevin on her program one other time several months ago during a segment on bullying, so this will be Kevin’s second time participating in her radio show.
Kevin has always been outspoken about his feelings towards Finn and how Finn has impacted him and our family. I hope you’ll tune in to the show tomorrow evening! If you miss it, the podcast will be available for download Friday morning.
The Mirriam-Webster Dictionary defines forgive as “to cease to feel resentment against (an offender).”
Can there be real forgiveness on the part of the offended in the absence of remorse or regret on the part of the offender? This is a fundamental question I struggle with in the context of certain relationships.
How can there be forgiveness – or trust for that matter – if someone behaves in a manner that causes very real hurt, stress, and anger, but that person refuses or is incapable of seeing and acknowledging that their behavior negatively impacts someone else? If there is no remorse, then there is also no assurance that the offender will not continue to behave obnoxiously, insensitively, rudely, and hurtfully. How does one move on from there?
There is no choice but to accept the person as they are, with no expectation that they will change to suit you. This means accepting that they are unwilling and/or unable to see past their own feelings, and this will very likely result in continued behavior that is offensive and hurtful to the people around them.
With every relationship, there must be a cost-benefit analysis. Does this relationship benefit me more than it harms me? Does it enrich my life more than it costs me? Does it bring me more positivity than negativity?
We are all, as adults with all of our faculties intact, responsible for our own happiness. Part of being responsible for our own happiness is choosing to involve ourselves in healthy relationships that are based on mutual respect, honesty, straightforward dealing, trust, kindness, and mutual valuing of one another’s personhood and feelings. Involving ourselves in relationships that don’t have those elements is akin to choosing to be victims.
I refuse to be a victim.
Here is a clip of Kevin teaching Finn Teenspeak. Finn seems to be very receptive to this.
Seriously, who needs speech therapy with such willing teachers as siblings?
This week we had two “maintenance” appointments for Finn: one with the ENT to check the status of the tubes he had put in his ears about a year and a half ago, and the other, today, with a pediatric opthamologist for a regular annual checkup of the ol’ peepers.
I have been suspecting lately that Finn’s tubes have come out, because he’s starting to have one cold after another, like he did before he got tubes, and which getting tubes largely did away with. He just finished a round of antibiotics for an ear infection before Christmas, and here he is again, congested and snotty. So the visit to the ENT was actually timed very well. No ear infection this time, but he does have a sinus infection. Also, it appears that one of his tubes is gone. The other is still there, but undetermined if it’s still functioning or not. So Finn is on another round of antibiotics (the ENT prefers Augmentin over Amoxicillan; “Amoxicillan no good!” he says sharply), and I have to say that after just two doses, he already is showing vast improvement. It also looks like he’ll be getting more tubes put in before too terribly long.
Today’s appointment with the opthamologist was looooong. A lot of waiting. Waiting to be seen initially, then more waiting for the eye drops to dilate his pupils. His vision appears to be fine at this point. However, the doctor did note that the optic nerve in his left eye appears to be smaller than normal. This is not new; the first pediatric opthamologist Finn saw at seven months old noted the same thing (see here). The doctor today, however, (a different doctor; the old guy retired) is requesting a referral to an endocrinologist, and she mentioned a possible brain MRI! A brain MRI? This was alarming! She said that oftentimes, a smaller-than-normal optic nerve is related to pituitary abnormalities.
I’m not going to let myself get all worked up about this. We’ll just have to wait and see what happens and take it from there.
We are still waiting to get a solid date for his sedated echo which will reveal, once and for all, the status of the ASD he was born with. It’s been rescheduled more times than I can count now, which is frustrating. As of now, we do not have a date.
Finn is oblivious to all of this. Ears? Eyes? Heart? Whatever! He’s just busy tearing up the joint. And I have to say that I’ve never been more sure that we did the right thing in quitting therapy. He’s making gains by leaps and bounds, and it’s a sight to behold.
Dear Guy With the Monster Truck,
You should know that when I parked my SUV in that parking structure this morning (you know the one), I carefully chose a parking spot with plenty of room on either side of it. See, I am aware that I need this room in order to get my children in and out, which requires me to climb in the back and buckle them into and out of their carseats. Now you may not care that I have children, and you may even disdain that I have children (I have to assume that you do not use your Bulldozer Hybrid to transport tiny spawn; with a vehicle like that, I just really doubt you’re a stroller-pushing, little butt-wiping, hand-holding, story-reading dad). But I did try to give you fair warning that I do have children, and several of them at that. Did you not see the rather large family of stick figures parading across the back window of my humble vehicle? Not sure how you could miss it. That, sir, is your cue to give me room if you insist on parking next to me.
Perhaps owning such a glorious specimen of automobile as you own infuses one with the feeling that one is taking charge of things! Taking charge of the road, by God! Taking charge of all parking spaces! Let’s hear it for Taking Charge!
Let me just take this opportunity to set you straight. You may own a grotesquely gargantuan vehicle, but you do NOT own the road, nor are you the King of All Parking Spaces. If you are going to park so close to me that I have to suck in all my breath and mold the natural shapes of my children in order to squeeze all of us into my smaller, reasonable, humble truck, then chances are really good – excellent, in fact – that the paint on your shiny truck will sustain some type of blemish. And under those circumstances, I’m not likely to leave you a note of apology with my contact information should you feel the need to pursue the person who left a ding on your truck and demand restitution.
Have a nice day.
PS: Best of luck with that smaller-than-average penis!