7 Things About Me You Might Like to Know. Or Not.

17 May

I’m writing this as homage of sorts to some beautiful blog posts I’ve read recently about what it’s really like to raise a child with special needs.

I don’t intend this post in any way to be a mockery of the heart-rending and inspiring truths these writers have exposed. In fact, I am awed by their honesty and validated by their feelings. I feel less alone.

So think of this post as a compliment to those, Modern Messy style – a little bit funny (here’s hoping), a lot self-deprecating, and a tiny bit educational. Keep in mind that the opinions expressed herein are solely my own, and if I say “we,” I mean that in the royal sense, as in “me.” If you agree with me, or especially if you don’t, I hope you’ll leave a comment. What do you wish other parents knew about you?

1) I’m Really Just a “Regular” Parent. Just because I have a kid with Down syndrome – now age 3 ½ — doesn’t make me any more special than you. I don’t want people to think there has to be this “us” and “them” divide – people with a special needs child and those without.

Being a good parent is hard on anyone, and joyous for everyone. I’m happy to hear about your child’s accomplishments. Sure, I may have pangs of envy because my son can’t do the things your child can do, but trust me, I’ll get over it, and it’s nothing to feel sheepish about. After all, I am reminded of his limitations all the time, because he has a typically developing twin sister as well as a terrific big sister. I feel like for the most part, I’ve been able to come to this place where I judge him on his own terms, and I am wildly happy with what he has accomplished, even envy-proof most days. (Just don’t catch me on a bad day!)

I’d love to know how parents of an only child with special needs feel about this – does it bother you when friends talk about their child’s milestones, even when they are doing so in a sensitive fashion? I feel like my girls are my buffer against those pangs of jealousy – between them and my son, I get to see all sides of the development arc, all the highs and lows. If you are the parent of an only child who is special and feel like sharing about this, leave a comment below. If you think I’m a jerk for even mentioning this, you can let me know that too.

2) I Treasure All My Friends, Especially Those Who Don’t Have a Child With Special Needs but Like Hearing About Mine.

 I’ve been blessed with amazing friends and neighbors who not only tell me how adorable and funny my son is (and they’re right, of course), but help me keep him entertained and look out for him. More than that, they don’t seem to mind hearing some of the gorier details about being his mom, and they aren’t afraid to ask questions. I love that. I hope I’ll always be so lucky. It’s what everyone should expect from their friends, but it’s not always what they get.

To return the favor, I offer this piece of advice to parents of children with special challenges, especially the newly born or just diagnosed: Let’s always remember to talk first with our friends about the things we have in common rather than the things we don’t. (See item Number 1 in this article here). If there is going to be a divide created between “us” and “them,” let it not be our emotions that create it. Give people the benefit of the doubt, and if they can’t handle being in your life or hearing about your child, just let them go.

And I’m not saying don’t talk about our kids’ challenges and medical issues, for instance. I’m just saying let’s engage friends and neighbors with conversation we can all participate in. Of course, this doesn’t apply when speaking with other parents who have a special child, which is why we need those friendships so much.

You never know what challenges your “regular” friends might be facing, though. One of my most startling discoveries has been that almost everyone I know has at least one child facing some sort of problem, be it a health issue or a behavioral or social challenge. Vision problems that come with eye patches; a severe allergy; adjustment issues in school; speech delays; hearing problems; coordination and gait problems; attention problems; behavior problems; sleep disturbances that torture the entire family; jealousy issues, the list could go on and on – it’s amazing any of us have made it to adulthood.

What I’m saying is that your friends may need you as much as you need them because they know they’ll have a sympathetic ear. Just because their kids’ problems don’t involve an IEP doesn’t mean they are any less taxing on the family.

3) I Am Unlikely to Finish a Conversation With You Anytime in the Next 5 Years.

This is for all the friendly ladies and gentlemen whom I’ve literally run away from in mid-sentence over these past few years. It’s been nice half-knowing you.

If we are at a party or public gathering spot together, chances are you will see the back of me more than the front. For I will have to chase my son, who thinks it’s hilarious to just start running for the first open space he sees, especially if there is a street with cars nearby. Or, if he is safely enclosed, he will probably be trying to eat off someone else’s plate, drink someone else’s drink, touch something hot, put something totally inappropriate in his mouth, lick a dog, or push or hug a small child a bit TOO hard (it is done with much love but little awareness of his own strength).

If you are speaking to me on the telephone, I will have to stop before being able to complete any thought because he (or his sisters) will be busy with what I like the call the Behavior Trifecta, or Triple D: something that is either dangerous, disgusting or destructive. At any given point in time, one of my children is doing something/some things from this delightful category. It’s not always him, but quite often he is the worst offender.

4) My Car is a Holy Mess. You try keeping your car clean when you have a child who thinks “put that down” means “fling it hard upon the floor,” where the object can roll out of reach, spill, break, become twisted in the car door, disintegrate, etc. Over the three short years of his life, he has also managed to perfect the art of removing his shoes, socks, and braces while we drive. (The braces are ankle-high supports that prevent his flat feet from pronating inward.)

Now he can do all that and fling each item in a different direction in less than one minute. He’s tricky though – he fools you into thinking he won’t do it every time, lulling you into this false sense of security and making you think you can actually put on his shoes and socks before leaving the house. Just when you think you’ve got it down, you arrive at school dropoff about 45 seconds before the doors close, and look back to see 10 little piggy toes wiggling happily at you. There are no socks in sight, of course. Why would he make anything easy for you?

Not to mention he is also a holy mess when it comes to eating – goldfish crackers and raisins fit very well into that little space in the car seat where the buckle between the legs begins (he still needs a five-point harness in his carseat, the squirmy thing). They also crumble nicely and line the seams of the car seat quite easily.

And for all of you out there – yes you, Captain Obvious – who say, well, just don’t feed them in the car, I have only one thing to say: you must live on a commune because here in the suburbs, our cars are our second homes. Isn’t that why mine is full of unmatched socks, empty coffee mugs, and The New Yorker magazines I never finish reading?  (Please refer to Number 3 above and note that I am also unlikely to finish a book or magazine article or see an entire movie anytime in the next five years either. So, you probably wouldn’t have had much of a conversation with me anyway.)

Oh, and the last reason my car is a mess? (It has nothing to do with my lack of organizational skills, of course.) He is like the Cookie Monster, but with books. I will sit him happily in his car seat, reading a book. One minute later, he will be “finished” reading it, and I’ll hear it clomp onto the floor. He’ll then say “Book, book, book,” getting higher and higher pitched until I give him another book. This process will repeat until I literally run out of books to hand over to him. One time we must have gone through 20. We were only in the car 10 minutes. I have since gotten things more under control. But he still loves to throw or kick books upon the floor when he is finished with them.

5) My Diaper Disasters Are Worse Than Yours. Really. Don’t even try to complain about how your kid is not potty training well at age 2 ½ or how your precious little baby loves to remove his stinky diaper in his crib. Wait until you’ve got a nearly 40-pound, nearly 4-year-old who loves to eat yet is still eons away from being potty trained.

Yeah, there’s a reason we get kids out of diapers before they (and their insides) get too big.

6) I Have a Great House for Playdates. I love it when parents of new friends come over and sheepishly apologize in advance for the havoc their kid might create. “Oh, and if little Johnny accidentally pees his pants, just call me.” Or: “If Maggie starts not wanting to share, please let me know and I’ll talk to her.” Seriously, people, this is all you’ve got, pee-pee pants and trouble sharing? Pshaw, been there, done that. Try me with biting, clonking on the head, throwing sand in eyes, screaming at top of lungs (3 children at a time), swinging from a curtain, covering a crib in poop, messing with so much paint there are paint footprints all over the floor, short-circuiting an electrical outlet and cutting off half their own hair.

Now, you may not want to come over my house after reading all that, but if you still do, here are a few tips. I have three kids. One has Down syndrome and thinks he’s outrageously funny. Two of them (including him) are preschool-age twins and act like little gremlins when they are together, creating new mischief every day. The oldest is 6 ½, so I’ve been doing this for a few years now. I am certified in CPR and First Aid. I grew up babysitting children, including a family of 6 kids, a family of triplets, and a child with severe mental and emotional problems. I will not say I’ve seen it all, for certainly I have not, but I’ve seen enough to know that your kid’s sensory diet or hatred of Barbie dolls is not going to ruin my day.

So don’t worry! We will figure out how to have a great time no matter what; I will adapt to whatever they need. Gee, in another lifetime I would have been a great special education teacher. You know, a lifetime where God remembered to give me some patience, insert a port for a caffeine IV and made me deaf in one ear so as to blunt the effect of whining.

7) I Am Neither Mary *!*!ing Poppins nor Martha $*$*ing Stewart.

For all you new readers out there, I am not one of those new-wave mommy bloggers who are both technologically savvy and domestic goddesses – in fact, I am neither. I will not be taking any museum-quality pictures of the food I am about to consume. I will never knit, purl, stitch, mend or even iron. I am not crafty, and though I do own a glue gun I still am not sure what to do with it. So stand down, all you beautiful modern ladies who have come so far through all the waves of feminism that you can run a corporate webinar, help your children build a totally cool tree fort AND make homemade jam in the same weekend. You win, really. I cannot compete.

I’m just a Generation Xer who spent most of her life NOT learning how to cook and clean because you know, I was not going to have to do those things. Who did I think would? They were supposed to do themselves, or my husband was supposed to do it. I will say, I got lucky in that my husband is not only a good cook, but enjoys cooking (and if it were a contest, he’d win). But you know, he has a fulltime job, and sometimes he’s tired, and the weekend is only two days long and so I have to figure out how to feed everyone on those other five days.

All this is a long way of saying that even though I love being a mom, sometimes I just get worn down by the endless cycle of it all and I don’t feel like being cheery or keeping the house nice and cooking a homemade meal. I just want to yell at the kids and then call someone to deliver food to the house. I do the yelling a lot less than I used to as my kids are getting older and our life lessons are finally sinking in. The laziness about dinner has been harder to conquer; it’s just a really rough time of day. Sound familiar?

I wrote a post a while back about how when you have a child with special needs, you have to do things the hard way and sometimes become the things you dread, like a winsome and undaunted nanny or an organizational wizard around the house, just so your child can succeed better in life. Children with special needs really thrive on order and routine, and they need lots of visual cues to learn where things go and what to do next. So a big mess is not very helpful. Nor is grumpiness, because what they really love is for you to speak in sing-songs. Yay.

I think that’s all been good for me, because it’s definitely brought me out of my comfort zone. But just in case you see me gritting my teeth when I’m out walking with my kids, you’ll know why.

Oh, and if you are a PTA mom, please try not to assign me the craft projects. I love to help out, but cannot draw a straight line to save my life. Don’t try to force me to decide between card stock and construction paper, or I may finally figure out a use for that glue gun.

8) I’ve Been Exhausted for Almost Four Years.  I know, there weren’t supposed to be eight of these, but after I wrote the rest I thought it sounded a little too cheerful. And you know how I hate that. Basically, I’ve been getting by on the absolute bare minimum of sleep each night since the twins arrived about 3 ½ years ago. And all my kids are good sleepers, so it’s not technically their fault.

But I just cannot seem to accomplish everything I need to in a day without staying up until at least midnight or 1 a.m. Clearly, I need to get my act together. Then I am up at 6:30 a.m. to pack lunches and prepare clothes and breakfast. All three kids go to a different school with no buses, so there is lots of driving around. But more than that, I just get tired of the constant disciplining, the repeating myself, the frustration at my son’s habits – like hitting, banging and licking – that seem unbreakable. His twin sis is no picnic in the behavior department either.

I am stressed out, as is my husband I’m sure, thinking about all the money we have to spend on doctors, therapists, braces, and activities for him and educational conferences and books for us just to keep him on a good path. We are lucky we have good insurance to help us do this; others are not so fortunate. Oh yeah, and then when our son hits midlife, he will most likely develop Alzheimer’s disease or similar brain degeneration. So we also have to pay attention to drug therapies now in the works to stave off some of these declines. Though it is wonderful to live in an era when scientists are devoting efforts to this, it still just seems overwhelming.

So if you see me on the street looking dazed and ragged, please understand I still feel young at heart, even though I’ve aged 10 years in the span of three. And please offer me your best household organizational tip – whether it be for streamlining bedtime, dinner, or morning routine, or something to help me organize all my papers! Comment below.

Link

Brain Boosting Activities From Yours Truly

26 Apr

 

Hello dear readers! Today I offer you a two-for-one special: in just “one” visit to my home page, you can find out about “two” very valuable items. First, this witty little post you are reading right now, and two, and I guess more important, this great article on Parents.com that I wrote with little tips and activities you can do with your babies, toddlers and preschoolers to boost their language development.

The piece was written to target children with Down syndrome, but it will work equally well for any child who is a visual learner, and your typically developing children will also benefit! Please check out the resources I mention in the piece; they have been invaluable guides for me.

http://www.parents.com/toddlers-preschoolers/health/other-issues/booster-activities-for-kids-with-down-syndrome/

Crazy Little Things Called Wheels

2 Apr

Low muscle tone and roller skates: two things that go together about as well as the proverbial fish and the bicycle. Or at least, that’s what I thought.

Our 3-year-old son with Down syndrome was born with pretty low muscle tone, or hypotonia, which is very common with that diagnosis, but his tone is low even taking that into consideration. The exact explanation of low tone is twisty and slippery and hard even for those with a medical background to describe.

Essentially, it means that fighting against gravity will always be harder than for the average person and that his limbs will be so flexible and loose that physical activities like running, climbing and gripping will always require extra work and practice. His trunk is also particularly weak, though with time, therapy and exercise, it has gotten much stronger.

So it took him until past 14 months to sit up by himself, and longer than two years to take his first unsupported steps. I like to call him my little semolina noodle, because when he gets mad and doesn’t want to do something, he goes all limp and stringy and will not stand up on his two legs no matter how much you cajole him. He still trips and falls. A lot. He can tumble off chairs in a single bound, is not yet fully comfortable on a regular playground swing, and has had a few nasty encounters with concrete stairs. He also feels like he weighs about 50 pounds even though he only weighs 37. “Heavy, heavy!” as he likes to say.

However, a miracle occurred at a recent birthday party. He was able to roller skate!

My older daughter, age 6, had been invited to a skating party at Kate’s Skate. I debated about whether to bring all three kids, as it was a daytime party during winter break. The mother of the birthday girl kindly volunteered that everyone was welcome to come. We would later repay this kindness by alternately throwing all the spoons on the floor (little brother), spilling soda on the pre-set table (little brother and big sis), and falling into the cake and leaving a big smear mark (big sis) even before the candles were blown out. Um, sorry about that. (Blushing profusely).

I hemmed and hawed. Maybe I should drop the twins at the babysitter’s house. Maybe I should just bring little sis, who as our son’s twin is also 3, because she has mad athletic skills and does well at skating. (I grew up without a drop of athletic ability, and so while it may be obvious to others that 3-year-olds all over the world are skating, skiing and swimming, to me it is still something odd and remarkable.)

The last time we went skating there — the twins’ first time on skates — it was a disaster for me and my son. He could not even balance for one second on those devils on wheels. He cried, he whined, he moaned. It was a fundraiser for my daughter’s school and I held him up under his arms the entire two hours we were there. Luckily, one of our favorite teenage neighbors came along as a mother’s helper and she watched out for the girls.

We’d skate on by the other parents, his shirt half hiked up from the effort, him writhing with discomfort, me gritting my teeth and cursing my decision to also wear skates. My back ached; my arms were about to fall off. Moms and dads looked at me with contorted expressions — was I torturing my child on purpose? I’d just smile back and give them that knowing eye-roll, as if to say “Kids… What are you going to do?” Inside I am saying, yes, people, I am torturing my child, and myself, because there are a couple of points to make here. The most important point is that kids with special needs can do anything their typical siblings can do. The other point is that tired, half-delusional 40-year-old moms of such kids should not be donning roller skates at 7 p.m. on a Friday night.

But I decided to try again and just bring everyone to the roller-skating birthday party. Big sis never wants to leave her twin siblings behind — they must come everywhere with her, like beloved dolls. This time, at least, I would not be wearing skates. Maybe I would have my son not wear them either; surely he would remember his last traumatic experience and would not want a repeat performance.

As we made our way to the counter where you trade your shoes for skates, another Mom passed by with her young sons in tow, both already on skates. I remarked that they were doing so well. She said yes, but that it had really helped that the wheels had been tightened. What? I asked, feeling like a cartoon mouse that has just realized the cheese had always been his for the taking because the mousetrap was broken.

“Just ask them to tighten the wheels,” she said. “Then they barely slip around at all.” Could it really be that simple?

Why yes, yes it could. The helpful young man at the skate counter smiled at my son and said “Hey buddy, you excited to skate?” No surprise, or wonderment in his voice, that a child with Down syndrome would want to skate. I wanted his nonchalance; said a silent prayer of thanks for putting this young man right here at this minute. He asked my son’s size and brought out a pair of skates. My son looked happy and started playing with the laces and trying to put them on.

“Can you tighten the wheels?” I asked.

“Is that good?” came his reply, after a quick adjustment.

“All the way, please,” I responded.

Copyright Victoria S. Vila, 2011

And just like that, we put on the skates. He stood up. My son with Down syndrome stood up on roller skates — four wheels under each foot — and did not fall. I held his hand for the first few steps, but after that, we both realized he could get around on his own. Sure, he wasn’t actually skating — it was more like a shuffle, but he could move without much assistance, slowly, and be just like the other kids. I’d stand right by him and hold his hand if he needed it. If.

It was time for the party to begin. Excited kids, most unsteady on their skates, headed for the center of the rink. Mine were no exception, squealing with delight. They all felt the gravitational pull of the friendly mascot, a large dog on roller skates, and waited their turn for a hug. I stood slightly in the distance, holding no one’s hand.

At that moment I started thinking about one of the greatest gifts of parenthood, or of the universal human experience, really: a whole world of emotional highs and lows that bubble way inside you, a landscape of deeply felt experiences that no one else can see or share, but that make your own life rich, transcendent even.

To the casual observer, I probably looked just like any other mom there. Smiling, watchful, ordinary. They would see the giant costume dog and the poorly lit roller rink; they might feel the thump of the dance music and hear the children’s laughter. Nothing of note happening here, people, move along!

If they got closer, they might have noticed my eyes welling up with tears, but never would they realize how filled up I was with pride for my son, for his perseverance, his determination to be his sisters’ equal. That he was roller skating was not my choice, but his.

It’s happened before: We take him someplace new, unsure of how he will react or how much he will be able to participate. When it works well, it always seems slightly miraculous, because so much emotional effort has been invested. When it doesn’t work, we may feel frustrated, but we usually understand why.

This time seemed different. I hadn’t thought much about it, because I just assumed he wouldn’t want to roller skate. That he was able to — that he wanted to — was a gift out of the clear blue, an unexpected delight on a random Wednesday afternoon. A minor adjustment — tightening the wheels — made it all possible, but his will sealed the deal.

I will try to keep this in mind when contemplating his future. When I am unsure of what direction to take with him, I will try to present him with the path that leaves open the most options, even if some of those options include failure. Maybe letting him make the choices sometimes could be the best answer to the everlasting question: What do I do now?

An Invitation to Click

24 Mar

I’ve updated the “Blogroll” on my homepage. It has some great resources for parents and educators of children with special needs, especially Down syndrome. Check it out! Let me know what other web sites you have found useful as a parent, loved one, or educator of a child with special needs.

Speaking of clicks, if you click on this link, you’ll find a list of blogs about Trisomy 21. Some of them I’ve read and enjoyed, and some I still want to explore. For more ideas, check it out. (Oh, and under “T” you might see the name of a blog you already know and like! I just asked, and they added me. Thanks to them!)

http://www.squidoo.com/downsyndromeblogs

Why Mommy Loved Therapy

18 Mar

You start the day with a picture chart, showing your developmentally delayed toddler exactly what is going to happen over the next half hour. Look! Here you are getting your diaper changed. Yes, then you get to have your milk and eat your breakfast. Then we’ll wipe your mouth — I know you hate that — and then you can play with your sisters. Oops, wait a minute, first we have to do these oral-motor exercises to strengthen your jaw. Open your mouth please, and bite down on this vibrating stick. Good! Now make a fish face until the stick pops out. Great! Let me massage your jaw while singing “Mary Had a Little Lamb.”  Oh, you wanted “Itsy Bitsy Spider?” OK….here we go.

High Chair Drama King

©thehighernest, via Flickr

A few minutes pass. “Itsy Bitsy” has now been sung 6 times. Mom is in agony. Child makes sign for “again,” and says “again.” Again.

Exercises finished, child must now clean up plate and put it in sink before going off to play. Oh, and he has to pick up the cup that he threw on the floor, just like he has been doing three times a day for the past 732 days, even though he is reprimanded each of those times and reminded of what to do instead, which is to place the cup on the circle that has been lovingly drawn onto his highchair tray.

This morning was made possible by the therapists who worked with our son for almost three years as part of the North Carolina Early Intervention program. They were the ones who came up with these great ideas for making life easier for our son, who has Down syndrome, and for us, his parents, who also have two other children: a daughter, age 6, and our son’s twin sister, age 3. (The oral-motor exercises I mentioned were part of a program developed by Lori Overland, SLP, a speech and feeding specialist who has become mildly famous for working to increase speech production and clarity in children with Down syndrome by addressing difficulties with jaw movements, jaw strength, and chewing and swallowing.)

Make no mistake, most mornings did not go like that — rather, they were a jumble of harried breakfast, harried mother and crazy young children. But on the good mornings, no, the perfect mornings, things could go like that. And as you can see, they were still far from perfect. They were, to put it gently, very busy. Of course, this is only my point of view. How did my son feel about all this? Well, he always loved his “lady friends,” but some mornings he definitely wanted nothing to do with the therapy itself.

For about two and a half years, I had the privilege of having a group of lovely young women therapists come into my house and work with my son — a physical therapist, speech therapist, occupational therapist and play therapist, also called a special educator. We also added a behavior therapist in 2011. Then he aged out of the program at 3 and started preschool in September, along with my other children — big sister going full time and little sister part time.

It has taken me almost this long to digest this transition and what it means, which is the absence of things.  The absence of brother and sisters fighting and crying nearly nonstop for hours; the absence of relentless morning activities, meals and schedules. The absence, most of all, of our beloved therapists. I’ve heard some special needs moms express pleasure at the thought of Early Intervention ending and not having a stream of people come into their house each week. I get that. I do. Feeling bound to the schedule, trapped in the house. But for me, those very minor inconveniences were far outweighed by my overall joy at having these incredible people right in my living room.

My teammates, helpmates, resident experts, colleagues in this strange new job they call full-time parenthood. In addition to the incredible task of helping us help our son reach his potential, they were also my shoulders to cry on, cheerleaders for all my children (and for me), resolvers of sibling warfare and gentle advice givers. Imagine if every stay-at-home parent had a nice lady come to the house and say in a very relaxed cadence that the parent was doing a great job. And then, very subtly, also dispensed some simple advice for doing things better. When our time for home therapy was up, I cried. More than once. OK, more than twice.

I called them friends — and always will — though as friendships go, they were a bit odd, one-sided and more crucial for me than them. I’m not sure how many professionals want to walk into work to be greeted by a wild-eyed, bed-headed mom with three small children sticking to her like jellyfish and who has little idea what to do with them. But our therapists never seemed ruffled when that’s exactly what they got.

While of course they were teaching my son the step-by-steps of sitting, standing, talking, eating, listening, and a gazillion other things large and small ending with “ing,” they were also teaching me. To be patient, to be persistent, to be flexible, to be creative, to take it easy (even on myself sometimes). Everyone with a young child should have a therapist to support them. Or maybe just people like me should, neurotic worriers who can’t seem to do the simplest tasks correctly even though they somehow managed to plan trips to Europe and land big-sounding jobs in the heart of Manhattan. People who now spend their days feeling bad for roadkill, especially flat turtles who could’ve never, in a million years, made it across a well-traveled roadway. Maybe there should be a test when you have a kid, and if you’re too sappy, you get a therapist to toughen you up.

How do you replace all that? You don’t, I guess. You just move on and hope for the best. So here’s me, hoping for the best.

What I’m really trying to say is: see you around ladies. Let it not be long before our paths cross again. Oh, and thanks for saving my life.

Playing to Their Strengths: Teaching Children with Down Syndrome

19 Feb

Below is a short tutorial directed at my son’s teachers; a love letter of sorts, if you will. He is 3, and in a preschool for exceptional children within our local elementary school. I think these ideas apply broadly though, to all professionals and all parents whose children have Down syndrome or other cognitive disorders. I hope there are takeaways in here that apply to children of any age. Let me know what you think!

To My Son’s Teachers: Research-Based Strategies for Learning

Some notes from a conference presented in Charlotte, N.C., last fall by Down Syndrome Education International, a UK-based research and training organization that has been using clinical trials to study how people with Down syndrome learn for 30 years. Professor Sue Buckley is the lead scientist at DownsEd and was the featured speaker at the conference along with some of her colleagues. For more information: www.downsed.org.

Memory

You may have heard that children with Down syndrome are “visual learners,” meaning that they learn better when information is presented visually rather than just spoken to them. The reason for this is that they have specific impairments in their auditory short-term memory and relatively strong visual memories.

What this means is they may need visual prompts like pictures or signs in order to learn language, follow directions, or answer questions. For a one-step direction or word, no visual prompt may be needed, but if you are asking the child to complete a two-step direction or say two or more words, a visual aid may be necessary until the child has mastered this skill.

(Visual aides like pictures are also great for a child who has difficulty with transitions so he knows what to expect next.)

For instance, when trying to increase the length of your child’s spoken phrases, holding up a card with two dots (or three dots, etc., depending on the child’s level) and pointing to each dot as you say each word can help serve as a visual reminder to compensate for the child’s weaker auditory memory. This is known as a pacing board.  If your child looks at his toy and says “ball,” try to get him to add the color also by using a pacing board with two dots and saying “Ball. Red ball,” and pointing to each dot as you say “Red…ball.” For more information about this, please see the fascinating book by Libby Kumin, PhD., CCC-SLP, “Early Communication Skills for Children With Down Syndrome: A Guide for Parents and Professionals.”

Language Learning

About a half dozen studies have shown that reading progress is often above the mental age for language and verbal skills, and in many cases children with Down syndrome can read at age level! The researchers at DownsEd, as the organization is called, learned that many 3-year-olds could remember a visual word easier than a spoken word.

(Mathematical skills are more difficult, and often lag 2 years behind reading skills. More on that another time.)

Reading can be fostered in the classroom and at home with the use of letter cards or letter books — pages with a letter written in big type and accompanied by a picture of something that starts with that letter. Show the card, then say the letter sound to the child, then say the word and see if the child repeats it. Over time, you can ask the child to categorize by putting all the “b” words in one pile, the “d” words in another, etc.

Studies of children naming picture cards showed that speech production was clearer when imitating (watching closely as the adult spoke the word slowly). This showed that another problem was storage and retrieval from memory, not a motor skill or vocabulary issue, although some children with Down syndrome also have oral-motor weakness that impedes their speech.

Children with Down syndrome are good at matching games, so you could have a group of pictures with the word written underneath, and have the child match the corresponding picture with the word underneath. Over time, you can gradually progress to having the child match only a word to the correct picture, and then match word to word, with no pictures at all.

Once children with Down syndrome acquire a basic vocabulary through signs and spoken words, introducing the printed word will help them increase their vocabularies and also begin to learn grammar. In fact, once a child is putting 3 or 4 words together, reading will be the best way to learn grammar (for instance “Mommy is driving the car,” rather than “Mommy drive car.”)

Reading, Word Recognition

Preschool children can start whole word/sight reading when they have a vocabulary of 50-100 words and are able to match pictures (find the one the same) and select pictures (Where is the dog?).

Phonics instruction should not begin until the child has a sight vocabulary of 30-40 words, or with the rest of the class in school. Many of the early phonics skills will overlap with speech and language activities that teach letter sounds and initial consonants.

The computer plays to the visual strengths of children with Down syndrome, said Professor Buckley. She said the iPad is going to revolutionize education of our children. So please keep encouraging them to use the computer and don’t hesitate to play letter and number recognition games.

Errorless Learning

One fascinating tip presented at the conference is that children with Down syndrome are very sensitive to failure. If they sense they will not be able to do something correctly, they may simply refuse to do it. You may present a task to them, and they may start smiling at you or otherwise getting distracted. This may be just a behavior, but it may also be their way of trying to “get out of” doing the task.

A way around this is to use errorless learning. In other words, do not let the child get something “wrong.” Assist him in getting the answers right until he learns to do it himself. For instance, if you are asking the child to point to the dog and he points to the duck, keep prompting for the right answer. Avoid saying the word “no” or “that’s not right,” or similar language.

Instead, say something like, “That’s the duck, do you see the dog?” Prompt a few times and if the child doesn’t get it, take his finger and point to the dog, saying “There’s the dog!” Similarly, if you are asking the child to choose from among a group of cards and he is not finding the right one, gently push the correct one forward to encourage him to choose it. Praise him for making the correct choice and try another activity. Over time, you will slowly decrease the amount of support and prompts you are giving to the child.

  Ending on a High Note

Perhaps the most striking yet simple idea presented at the conference by Professor Buckley is that we all should treat our children according to their chronological age as much as possible, not their developmental age.

As an example, she told us about her own daughter, who is now an adult and has never had a strong spoken vocabulary. They always treated her very protectively, and she took a special bus to either school or day service until the age of 22. Around that age, she joined the “real world,” moving to a supported living situation and beginning a relationship with a young man.

Finally, she came into herself, Professor Buckley said. Her daughter learned more between the ages of 20 and 30 than in the previous 20 years, she said.

I love this story! Let’s all work for full inclusion for our children and have the ultimate goal of letting our adult children be adults when the time comes. I anticipate this will be harder than it sounds. Thank you for helping us get there!

Wish I May, Wish I Might

25 Jan

may 13 - evidence

When you have a child with Down syndrome, you have lots of dreams and goals for your little one. Some of them are simple — or I should say, they sound simple to most people — dreaming of the day he will walk, or say your name, or sleep in a bed instead of a crib, or sit at a table in school and complete a project instead of abandoning it in frustration.

Our son is 3 now, and all of the mini-dreams I mentioned have come true for him. In each case, it was a time for much rejoicing and the marking of a true turning point in his life, and in ours. I often feel like special needs parents have been given a great gift, because we appreciate the simplest things so fully. These little victories come in brilliant starbursts, unexpected and awesome to behold.

Some dreams are vaster. When you are still at the beginning of your journey like my family is, these big dreams often seem as out of reach as the next galaxy. The wish for full inclusion in a regular classroom; for a college education, a driver’s license, a job and a life of his own, hopefully with a partner by his side.

I hold these big ideas for my son close to my heart. I do. Like any parent, I want them all. But if I had to paint a picture of my fondest wish for him, it would look like this:

It is raining, and the day is gray, but warm. There is a playing field with short green grass and a mist hovering close to the ground, giving everything an ethereal quality. A group of teenage boys have finished their pick-up game and are walking off the field, water dripping from their hair and their shorts, mud clinging to their soles of their shoes. They have played football, or soccer or baseball, or maybe they’ve just completed a run.

Despite the sogginess, they are not rushing, not desperate to get out of the rain. They embrace it, because they will soon be men and men do not trouble themselves over a little rain.

They have everything going for them, and people take notice of this because it shows in their eyes. They have found a place in this world and it is called self-assurance, tenuous though it is at this tender age. Here is their secret: they walk separately but together, a temporary tribe. Some of them have matching gaits, step by step, but they don’t notice that. Maybe they are laughing, but maybe they don’t look at each other at all. They don’t need to. They are friends.

Among this group is my son. Walking as tall as everyone else, smiling but quiet. Thinking, like everyone else, about his victories and mistakes on the field, and the pizza and soda that awaits. He doesn’t notice me, because I am not there. He doesn’t need me to shepherd his every move now. But when this happens, I will know it, somehow I will know about this eternally simple day that nonetheless shook the sky in my little corner of the world.

The door to our house will open, and he’ll say “Hey Mom, I’m home.” I’ll want to look slightly annoyed because he has forgotten to wipe his feet and now there is mud on the floor. But this time, I’ll probably let it go. And that night, I’ll stay up late imagining a new dream for us.

He Came Bearing Whimsy

11 Jan

In this season of tallying up, starting fresh and counting one’s blessings, I am grateful for many things: my loyal readers, a healthy family, a funny husband, loving parents and friends, a comfortable house and Carolina sunshine.

But in particular, I am also grateful for my son’s outlook on life. You see, he is a 3-year-old with Down syndrome, and among the many things this means is that he takes things literally and doesn’t interpret things the way the rest of us do, often to comic effect.

One recent ordinary Sunday, I was making lunch and our daughters — ages 6 and 3, our son’s twin — were coloring. Our son was flitting around from thing to thing as he is wont to do, and my husband was putting up shelving in the garage using a drill. From inside the house, the sound of the drill was amplified and each time it hit the wall, it made a high-pitched buzzing/trumpeting noise that sort of sounded like a large animal pushing against the wall, noisily wanting in.

To our son, who loves animals, this sounded exactly like an elephant. He animatedly made the sign for elephant and said “El-phant!” Each time the drill made the sound, he would run over and pull at me, saying “Mommy! El-phant!” I would smile sweetly and say “Yes, it sounds like an elephant, doesn’t it?” How cute, I thought.

But it didn’t stop there. Pretty soon, his excitement reached a fever pitch and he was standing on a chair, emphatically saying “EL-PHANT!” Not just once, but multiple times. And he was looking at the rest of us going blithely about our business, totally unenthused about the angry elephant sound. How boring were we, he seemed to be thinking, how unmovable. Humph, was his expression.

I Bring You Love . . .

Well, enough of this elephant business, I thought. It’s time for lunch. “Go wash your hands,” I told my son, pointing to the bathroom, which was right on the other side of the wall from the elephant sound. “But…” the look on his face said, wordlessly, as his expression turned into a pitiful little pout. He pointed to the bathroom and said softly “El-phant?” Mommy, you seriously want me to go in there WITH THE ELEPHANT?

Boom, it finally hit thick-headed Mommy. He did not think it SOUNDED like an elephant. He thought it WAS an elephant! I nearly melted away at the comedy and pathos of that thought. Poor kid! No wonder he was looking at us like we had lost our minds. I laughed delightedly, we all did, as I explained what he was thinking and had my older daughter accompany him to the bathroom to show him there was no great beast waiting its turn at the sink. (“El-phant; all gone,” he said matter-of-factly.)

Then we all gladly took him into the garage to show him what was really making that noise. But he was not swayed. Every time the drill buzzed, he still said “El-phant!” Exclamation mark his.

And I felt slightly jealous. After all, wouldn’t a world where pachyderms stopped by for PB&J be infinitely more exciting than one where toddlers took naps while moms swept crumbs from the floor?

Trumpet Trumpet. Stomp Stomp.

Happy Belated New Year!

11 Jan

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Away She Goes

22 Sep

Now that I’ve had a little time to think about it, I’ve figured out what bothers me most about the First Day of School. It’s the doors. The doors to the classrooms. They are so narrow, and there are no windows on the walls either. You take your oldest child, whom you have raised for years in the cocoon of your home, and you walk her quickly to the door of an unfamiliar room — Kindergarten.

And then in she goes, whoosh. Into a void. Sucked from the wide world into this suddenly tiny room. She walks in ahead of you to greet her teachers, and you try to squeeze in, but you can’t because other children have come in right behind. So there you are in the hallway, craning and stretching your neck to see inside, desperate for a peek.

2009 08 31 First Day of School_0010

© Laurens Kaldeway, 2009, via Flickr

Finally you get a look, and you know you will have to say goodbye soon. But first, you want to see what she is doing, your child. But she isn’t doing anything. She just got there! She is trying to put away her lunch bag, or looking for someone to tell her what to do, or maybe sitting in a chair. Or simply walking silently in the opposite direction from you, and this is a weird feeling. Before this day, you knew almost exactly what she was going to do at any given minute, whether at home being Little Mommy to her younger brother with Down syndrome and his twin sister, or in preschool. From now on, eight hours of her day will be a Big Mystery.

Sure, they’ll eventually send home a schedule and there will be curriculum nights where you can find out more about how and what they are learning.But because the day is so long and so full, you cannot possibly keep a grasp on what has gone on in each class, every day. Not that you need to. No one needs to, but you want to, you really really want to know. Because you’re the parent and you know exactly how she likes her oatmeal and which teddy bear she keeps closest to her pillow and what shape the constellation of bruises makes on her right knee. But this school thing is much more her business than yours.

Though you know you will be an involved parent and will visit the classroom and keep up with assignments and field trips, this does not change the fact that those doors and those walls divulge no information at the very moment you crave it most.

The First Day is about to begin, and the seconds until your departure are ticking by. You still can’t really see anything because other small bodies and big backpacks keep getting in the way. A zillion questions run through your mind. Is she happy? Is her hair getting in her eyes again? Will she be shy or friendly today? Will she choose puzzles or blocks? None of this matters a whit, yet the answers to these questions seem the most crucial of your life, simply because they are so impossible to obtain.

And then you leave. End of story. No fireworks, no confetti, no gong to mark the transition. (I’m dating myself, but remember the Gong Show? They knew how to send someone packing with style.) There is no warm, matronly woman handing you sympathy tissues — or, more my style, sympathy coffee and pastries — and saying with great enthusiasm “Thank you for leaving your beautiful, amazing and sometimes enervating child with us for the next 12 years!” No one pats you on the back. They are all too busy. As they should be. But still.

As Peggy Lee sang, Is that all there is? All the getting her excited for school, reading lots of books, buying new clothes, ceaselessly hunting for bags full of supplies, packing the lunch with care, waking up in the dark, actually making it out of the house on time — ends with a quick kiss good bye in a room full of strangers. Have a nice day, dear.

Don’t get me wrong, I’m THRILLED that she handled it well, that she was happy to be there even if she looked a little stunned. But I guess I thought there would be more pageantry about the whole thing. It just seemed too much like the rest of life — all business, no magic. And everything important associated with our precious ones is supposed to be magic, right? Right?

Yet I know the magic is there, past those walls you can’t see through and those doors you can barely fit into. Behind those blockades, all kinds of secret things happen that parents mustn’t witness. If they did, they might disrupt the alchemy that turns a little 5-year-old into a confident schoolgirl, possessed with the golden knowledge that she can indeed do great things.