For a Very Special Teacher, a Simple ‘Thank You’ Won’t Do

11 Jun

My son had an incredible team of people working with him this year in Kindergarten. Friday is the last day of school and this is the note I wrote to go along with the gift for his aide, who also supports another child in the same class. A act of pure serendipity brought her into our lives (and a smart administration kept her there), but we could not have come up with a better plan had we been purposeful. She was a gift from the universe.

Thank you for crossing my path that day in September and truly listening to what I had to say.

Thank you for always believing in my son.

Thank you for helping him go from “barely making it” to “thriving.”

Thank you for helping him love Greek class. And math. And reading. And everything.

Thank you for cleaning up applesauce, pee, milk, crumbs, smoothies and for catching his puke in a trash can.

Thank you for the Potty Tinkle Dance and for lying on the bathroom floor for his sake (please don’t do that again without a HazMat suit).

Thank you for helping him be a good friend.

Thank you for knowing that when he says “I hate you,” it really means, just give me a minute here.

Thank you for appreciating his sense of humor.

Thank you for stepping away to give him independence and then stepping back in at just the right moment to help.

Thank you for fostering pride in himself.

Thank you for teaching him how to be an “excellent” zipperer

When you have Down syndrome, so much depends on being supported by the right person. Thank you for being the best “right person” there is.

I have one wish: that every day heaven will break open just a little and rain down special blessings for you and your family.

In His Own Words: A Day in Life, 2015

15 Mar

What is a day in the life of a person with Down syndrome like? That’s the question posed by the writer and advocate Meriah Nichols and the Down Syndrome Diagnosis Network, whose mission is to provide accurate, up-to-date information to parents receiving a prenatal or post-natal diagnosis of Down syndrome. The answers, in honor of World Down Syndrome Day 2015 (Saturday March 21) are a beautiful mosaic of life in all its interesting variations. And by and large, they look like anyone’s life, extra chromosome or not. (You can also find other great ideas from the National Down Syndrome Congress at this link.)

I wanted my son to participate this year, since he is the actual person with Down syndrome. He helped me choose the pictures and I helped him “edit” what he wanted to say. He is 6 after all. The whole time I was typing this, him and his twin sister (who does not have Down syndrome) and big sister, age 9, were buzzing around me, fighting, arguing, trying to press the buttons, getting their heads in the way of my work, looking to see if far-away friends had messaged them, answering my questions, playing with toys, begging to go outside, putting on shoes without the socks and basically being nuisances to each other and to me. In a nutshell, that is a typical day for us.

This is a picture of him receiving a participation medial at a cheer competition for the Angels, which is this fabulous cheer team where kids with disabilities are paired with a teenage volunteer to learn tumbling and aerial routines that they perform locally. In this place, with these people, he shines. That look on his face of pure pride and confidence? That’s real, so incredibly real.

Cheer Medal

Cheer Medal, © Thoroughly Modern Messy

Some of his best friends are here, and every Friday we get to see them. He is especially fond of his volunteer, who is something of a big brother to him. What do you think about Angels, I asked him?

“Angels, my friends. I look and I wave. I wave to you! Then I get some ice cream.” Apparently he has not forgotten the one time after a competition when myself and some other parents went for ice cream with the kids.

“How did you feel when you got your medal?” I asked him.

“Happy….eeeee….that’s e in the middle?” He said.

“That’s not e, it’s a y,” piped in his twin sister with her usual exasperated authority. Day in the life? You betcha.

And next is a picture of all three at Christmas time (in case you didn’t notice the giant tree). I asked my son to look at the picture and tell me what he wanted to say about his family:

“I kiss Eva (big sister). I want to kiss Nino (that’s himself).” What else do you want to say?  “Computers. Dinosaur Say Goodnight and Dinosaur Is Feeling Sick (two of his favorite books to read on the computer).”  And? “I want to be Elsa and Eva can be Anna. Veronica (his twin) is Kristoff and Nino can be Elsa.” Frozen, if not his favorite movie, is the one he’s most obsessed with. He strongly identifies with Elsa and her unusual power.

What else can you say about your family?

“My sisters are nice to me.”

Do you fight with them sometimes?

“No.” (A total lie).

Do you like school?


What do you like best about school?

“I learn about Greek and computers too.” They go to a partial Greek-immersion charter school and all of them, to my surprise and delight, love learning Greek.

I also gave his sisters a chance to say something about him. First, big sister: “He can sometimes be annoying but he’s also really cute and funny. Also, whenever I cry or get sick, he always gives me a hug. And he always makes everyone laugh with his violent banana jokes.”

For example:

Him: “Knock Knock”

Us: Who’s there?

Him: “Banana.”

Us: Banana Who?

Him: “Banana Scratch Your Eye Out!”

And his twin sister’s opinion:

“He can sometimes be annoying, but he’s loving and funny. LIke when I get hurt, he cares about me. He helps me not feel sad anymore. And he can sometimes be mean. But you don’t want to write that. But even though he is mean, I still love him. He’s still funny. ”

Three Musketeers, Christmas

Three Musketeers, Christmas, © Thoroughly Modern Messy

Another way to celebrate this day is to read this wonderful blog post by Kelle Hampton and consider donating to fund college scholarships for people with disabilities.

My Connection to Disability — A Long, Thin Thread

8 Jul

This post is part of a summer blog hop that is the brainchild of Meriah Nichols. See other posts on the topic of Connection.

Until my son with Down syndrome was born about 6 years ago, I had no connection to disability in my life, or at least I didn’t think I did.

But if I scour the archives of memory, I see the little moments of connection that were threaded through my life. I hesitate to claim them as anything to do with me, because mostly I stood on the periphery.

No one in my family was disabled, but enough of my aunts, uncles and grandparents were sick or infirm that it made me scared of illness, hospital stays and nursing homes – things I associated with disability at the time, though I don’t now.

As a child, I was often sick. I remember missing school; even worse, I remember missing my one and only chance to go to the circus. We had to cancel at the very last minute because I was sick. Again.

I was born two months premature and had a host of allergies, now resolved. Every Wednesday, I got a shot in my arm that left a bruise. After a while I didn’t notice it, but to this day, the antiseptic smell of that doctor’s office and the antiseptic look of those wood paneled walls occupy a prominent space in my sensory memory, not at all tempered by the sweetness of the weekly lollipops.

When I was around 10, my mother took on the nearly fulltime job of caring for her elderly mother. My grandmother did not live with us, but it seemed my mother was constantly at her apartment, doing her shopping, helping her with daily tasks or making doctor’s appointments.  I got to help too, which I was glad to do. We’d go to the grocery store and I’d take my Nana’s list while my Mom shopped for us. That was fun for me.

But my mother seemed to get little in return for her efforts. My Nana, all of about 5’2’’, had a sharp wit and an unsparing eye that saw fault more easily than success. My mother never said in so many words that this caregiving was stressful, but I saw that it was. I dreaded the day I might have to become a caregiver for someone and vowed I would not let it consume me. (Little did I realize that her being a parent — my parent — was also likely all-consuming.)

In our neighborhood was a boy my age whose disability rendered him permanently childlike, both in stature and cognition. At 13, he looked like a 6-year-old. I don’t know if he had an official diagnosis. If he did, I never knew what it was. All I knew was that he had a sweet smile and very gentle eyes, magnified to twice their size behind stereotypically 1970’s style Coke-bottle glasses.

His mom would take him outside on their little row-house porch, just up the street from us. Everyone who passed by was a “friend,” who she gently encouraged to “Come on up and say hi to David.” I see now the steel beauty contained in this little act of hers, this determination that neither of them be alone. He was her only child.

I would often stop and say hi to David, which really meant sitting on her wrought iron chairs and having a glass of cold ice tea, quite good, while listening to her narrate the world for David, who never spoke. He would move back and forth from foot to foot and smile eagerly through the iron bars of the fence, making little noises when his Mom pointed out a squirrel or a cat, or a bumblebee. If his Dad happened to come home from work while I was there, it was like the heavens opened, and he’d wave his hands and squeal with excitement. Happiness.

Summer - Iced tea

Summer ice tea, © sashimisoda, 2014

Once I babysat for him, this boy exactly my age. I cut his sandwich into small pieces at lunch, played quietly with his toys alongside him, helped him sit on the potty and wipe afterward. The whole time we were together, he was calm. When his Mom came home, he behaved more defiantly, and seemed uneasy.

I always chalked that up to him somehow understanding the resentment I thought I saw lurking beneath the surface of her face, her mouth hard set in a line of displeasure. David never got any better, and I sensed that she took it hard. She would sometimes express the idea that it was hard, raising David, and yet her voice always resonated with a sing-song of joy, especially when talking to him.

So now looking back, again with the perspective of a parent whose children are often defiant and then some, I wonder if it wasn’t just him unloading his frustrations on Mommy (as all kids are wont to do), his sense of confusion over why she had gone and left him with this quite boring young teenager.

The only other child outside of “typical” that I encountered was another young charge that I took care of once a week when I was 16. He was about 7, and his father had recently died of cancer. Apparently, he wasn’t able to process this event and seemed to the untrained eye to be mentally disturbed.

He’d walk around the streets wearing a blanket as a cape and calling himself Jesus Christ, but not in a pretend way. He seemed convinced of it: he was God and as God, he’d surely find a way to bring his father back. Other children avoided him and just about everything he said or thought seemed, in a word, strange.

I can’t recall exactly what we did to pass the time when I took care of this young boy. Maybe some board games or pretend games? I really can’t say, all I can recall is the one time I had to put him to bed. I think I had to give him a bath, after which he absolutely refused to sleep in his own bed and so I had to try and get him to lie still in his Mom’s bed, an impossible task as he kept hopping up and down and I had nothing but words to talk him out of it. By the time his Mom got home, I was mentally and physically exhausted, but proud that at least he now seemed tired enough to sleep.

I was fascinated by him and had wanted so desperately to help him, thinking in my naiveté that I could, or should. After writing this, I decided to look him up on Facebook. If the adult male I found is not him, he’s doing an excellent approximation. I felt much relieved to see that his public profile shows him cavorting about in a variety of juvenile selfies, including one of him picking his nose. Ah, the resilience of the human spirit.

While still in high school, I got a fulltime summer job caring for an elderly woman with Alzheimer’s who lived with her daughter across the street from us. The woman, let’s call her Eleanor, was very gentle in nature and laughed easily.

She couldn’t walk without assistance, so I didn’t need to worry about her wandering away or hurting herself, because she spent all day sitting in her chair watching TV. I was there simply to keep her company and help her to the table when it was time for lunch. She couldn’t use the bathroom anymore, so I also had to change her Depends a few times. Though potty-training my own child sometimes filled me with exasperation and even disgust, this act of basic caregiving did not faze my teenage self.

Eleanor had many moments of lucidity, but more often she would ask when her husband or her son was coming. (They weren’t; her husband had died and her son lived far away and rarely visited.) We settled into a basic routine: she called me “You” if she needed anything, and I often read books while the TV played on, pausing to laugh with her at something silly. Oprah at 4 p.m. was a highlight for us both. We enjoyed the show, but we also knew that when it was over, her daughter would soon be coming through the door.

Row homes © injoongeum, via Flickr

I hope you, dear reader, haven’t come away with the wrong impression after reading these stories. I did not take these caretaking jobs because I was a kind person. I took them because I wanted the freedom that came with earning my own money, and these were the most readily available jobs outside of working at the mall, which I also did. Teenage girls were not always burnishing their resumes during breaks where I came from (but we all got into good colleges anyway). They were  finding ways to earn the spending money they needed to go dancing and buy the music, cute clothes and dangly earrings they read about in magazines. I had an internship, sure, but I also worked at the mall, sold Avon, and took care of people.

Yet I wonder: in these acts of caring, did I absorb some nuggets of truth about life? I doubt it. But I do think that sitting here, thinking about these stories, has made me realize that I’d been exposed to a wider variety of people than I thought. In theory, I don’t think of disability as a very big deal, though the concrete reality of it is much more complicated. But at least after all these years I’m not scared of being someone’s caretaker anymore. Being my son’s caregiver has been nothing like I worried it might be in the early days. It has not consumed me. We have a fun, active family life with our three kids – big sister, my son and his twin sister — that he is fully part of. The boogeyman of my childhood, chronic illness, did not come for us as I feared, though for the first few years of my twins’ lives, I thought he might because they were constantly sick.

If I’ve come to think anything specific about disability it is probably that we shouldn’t assume that someone who looks disabled needs our help. Ask first. More often than not, people with disabilities could mainly use a friend, a bit of conversation, a hand that reaches out and tells them that they are a part of the community too. Acceptance – not just tolerance, but an acceptance that they are who they are and it is no trouble for you to meet them on their terms.

I’d love to say that this way of thinking made it easier for my son with Down syndrome to have me as a parent, but I’m pretty sure it did not. No amount of caretaking could have prepared me for this most interesting and challenging of tasks, and most days I’m still not up to it. I don’t deserve his unconditional love and I’m barely quick enough to keep up with him.

I don’t really think of the term disabled as applying to my son, though I know it does; I am not in denial. Our boy is just our crazy little son, one of the funniest kids I’ve ever met, endlessly entertaining and frustrating in almost equal measure. If this gives me a connection to disability, then I guess I have one, but it doesn’t feel true. I don’t know any more about disability than I did at 16. But what I do have is a greater variety of stories to share. I hope you’ll visit again for more. In the meantime, check out the blog hop, where writers from across the world share stories about disability in their lives.

In Science of Down Syndrome, Another Piece of the Puzzle

20 May

A few news articles recently reported that after studying a pair of identical twins where only one had Down syndrome, scientists in Europe determined some new information about how having Trisomy 21, a third copy of the 21st chromosome, affects a person’s genetic material. You can read the articles here and here. For a scientific take that is still fairly easy for a layperson to understand, read this one in Science Daily.

Myself and some other parents who have children with Down syndrome were unsure what this research meant and were confused by some of the wording in these articles. To decipher this for my non-scientific brain, I contacted Dr. Michael Harpold, who has more than 35 years experience as a biomedical researcher and is the chief scientific officer for LuMind Foundation (formerly the Down Syndrome Research and Treatment Foundation) the largest non-governmental source of funding in the United States for Down syndrome cognition research.

After speaking with Dr. Harpold, I gathered that the basic takeaway from the study was the finding that having an extra copy of chromosome 21 affected the expression of genes on all chromosomes, and even altered the very structure of all the chromosomes.** (See Footnote).

Most people understand that the third copy of the 21st chromosome means that genes on that chromosome will be over expressed, said Dr. Harpold, and scientists have known for some time that it also affects gene expression on other chromosomes, with some genes being over expressed and others being under expressed.

But Dr. Harpold said the new findings indicate that genes on every chromosome, not just some, are affected. In addition, some of the gene expression alterations may be occurring because of structural changes in the chromosomes.  These changes, he said, were shown to occur in regular patterns – in other words, they are not random. Scientists aren’t sure which genes specifically are altering the chromosomal structures, but this study opens up a pathway for them to investigate, Dr. Harpold said.


Chromosomes, playing with extrusions © Jan Montarsi

“The consequences of this alteration in chromosome structure remains incompletely defined and will require additional research to understand specific effects,” Dr. Harpold said. “Based on this recent study, these alterations in chromosome structure correlate with differences in gene expression. Some of these differences in regulation of gene expression would be expected to contribute to some of the characteristics and medical problems as well as their variation between individuals in Trisomy 21.” For instance, this research may open doors in the future to understand why some people with Down syndrome have complex medical or behavioral issues, while others are less affected.

The study, he said, is “very important from the standpoint of opening up new thoughts about the mechanisms involved in Trisomy 21.”

The beauty of this particular study, he said, is that it eliminates the natural genetic variability among individuals, because other than the extra copy of the 21st chromosome, the twins share the same DNA. “As far as I know, this is the first time that somebody has done this exact study,” he said. As for those confused by how twins can still be called identical if only one has Down syndrome, Dr. Harpold said that while this situation is rare, it isn’t unheard of. It likely resulted from a random event during early cell division, where one twin received a third copy of the 21st chromosome and the other didn’t. Scientists can’t fully explain why that happens, he said.

The study involved an investigation of the chromosome structure and genes expressed (the RNA copies of the genes) in cells from each of the twins, said Dr. Harpold. In part, it expands on what scientists already know. “ This new study confirms the fact that some genes on other chromosomes are either over or under expressed,” he said, “it’s not a fluke.” Because of the natural gene variation occurring between unrelated individuals, Dr. Harpold said, it is not yet possible for the researchers to show whether or not the same pattern occurs in every individual with Down syndrome. It’s possible that the patterns would be similar, he said.

So, I wondered, what does this mean for the future of research?

“This new study opens the doors for further investigating which over-expressed genes on chromosome 21 or other mechanisms may be responsible for altering chromosome structure and gene expression in Trisomy 21,” Dr. Harpold said. “Such investigations could provide deeper understanding of underlying mechanisms involved in various medical problems experienced by individuals with Down syndrome and lead to development of new types of therapies. Further research based on the results in this new study may also provide new insights relevant for other trisomies.”

One thing the study does not do, Dr. Harpold said, is revise what science understands to be the root “cause” of Down syndrome, which at the most fundamental level is a third copy of the 21st chromosome, the smallest of the human chromosomes.

Another thing that myself and other parents wondered was whether this research would complicate current cognition research. (We thought it was complicated enough when just the 21st chromosome was involved.)

In terms of ongoing research into drug therapies to improve learning and memory and prevent Alzheimer’s disease, he said that the study doesn’t affect anything currently in the works. “I think that as a researcher,” Dr. Harpold said, “it’s very interesting and opens up new pathways for additional research, but relative to the ongoing cognition research, the results of this new study do not say or indicate anything that’s been done is wrong or won’t work, it’s just a different layer.”

“It doesn’t directly or immediately impact the mechanisms or targets or drugs currently being studied,” he continued. “It may lead, however, to a greater understanding for potentially refining these approaches, but it doesn’t say they’re wrong.”

Here in Charlotte, I asked Campbell Brasington for her insight into what this study was telling us. She is a certified genetic counselor at the Down Syndrome clinic at Levine Children’s Hospital. She has written her own paper about the Nature study and you can find it here. (Scroll down to the bottom of the page.)

“Obviously, this study raises many more question than it answers,” she said, “but that is not new to anyone who has been following genetics over the past few decades. Certainly the development of new genetic technologies has outpaced our understanding of how many of these new findings are used and interpreted for our patients we see in our clinic and how they can be applied to clinical care.”

“This study’s findings do open many new doors for other ways to look at Down syndrome and how we might develop effective treatments that will improve overall health, cognition and quality of life for children and adults with Down syndrome,” she continued. “This will build upon and enhance research already ongoing and may also help in understanding the effects of other trisomies, such as Trisomy 18 and Trisomy 13.”

“Personally, “ Ms. Brasington said, “I am excited by this study because it shows that researchers are continuing to think about Down syndrome in new and innovative ways and how it affects the people we know and love who have Down syndrome so that future generations will benefit.”

For my part, I obviously don’t know what effect this research will someday have on our family or our son with Down syndrome, who is 5. But the disobedient rebel in me is getting a kick out of the idea that something about our son is, once again, more complex than we first thought.

Please keep in mind that I undertook asking the questions in this post mainly out of curiosity – I am fascinated by scientific research and briefly considered neuroscience for post-graduate studies (yes, people who’ve known me forever, it’s okay to laugh here). I am not promoting this research as something we should be excited about, but on the other hand, I see no reason to fear it, for I’m not sure it’s possible at this point to feel one way or the other. A special thank you to Dr. Harpold for patiently wading through my ignorance to answer questions and to Ms. Brasington, who is on the board of our local support group, the Down Syndrome Association of Greater Charlotte.

By writing this, my intent was not necessarily to enlighten, but to let you know there is an interested party watching and questioning. I hope that we can always be partners in curiosity when it comes to our children with intellectual disabilities. Please share your thoughts in the comment section below, or on my Facebook page. If you have additional questions, please post them below and I’ll try to ask one of the scientists.

** FOOTNOTE: For those who need a refresher on genes, cells and DNA – myself included – visit this great website from the National Library of Medicine.




The Opposite of Boring

22 Mar

This post is part of a blog hop in honor of World Down Syndrome Day on March 21 — the date is 3/21 for the three copies of the 21st chromosome that cause Down syndrome. (It will surprise no one who knows me that I am a day late on this).

The other day I was sitting around with my three kids talking about opposites. Our little kids, boy/girl twins who are 5, are in preschool. So they think in terms of pretty basic opposites like in and out or up and down. Our oldest daughter, who is 8, likes to play around with ideas a little more and she was trying to figure out the opposite of things not normally known for having antonyms, like rainbows and dogs. (“Well,” she said, “isn’t cat the opposite of dog?”)

Soon we were cracking up because I was asking, “What’s the opposite of nose?” and her little sister would say “No nose,” and so forth, with all of the body parts. The conversation came around to ourselves. The opposite of little sister was “not crazy” and the opposite of big sister was “not weird,” and the opposite of me was probably something like “nice.” Then the girls asked me what would be the opposite of their brother, who has Down syndrome. I thought for just a few seconds when it hit me: boring.

My son is many things: full of energy, willful, persistent, hard to motivate, uproariously funny, frustrating, defiant, loving, silly, curious and strong. But he is anything but boring. He has never been boring. Not when he was learning to crawl and would lie on his belly and shake his legs in the air furiously behind him for a happy dance. Not when he lights up like a Christmas tree at the sight of a dog. Not when he says “No, mine’s!” about every toy that enters the house that someone else tries to play with. Not when he puts on a “show” by using a blanket as a cape and pretends to be his latest favorite hero/princess/super pig. Not when he shrugs his shoulders at an important question (“Where did you put the remote control?”) and says “I… don’t… know.” There is something particularly enchanting about hearing my language-delayed son learn the correct use of a phrase that rolls so easily off the tongue for most of us.

A typical day for him starts with me rousing him from bed and him grumping about getting up, possibly calling me “meanie,” before laughing and digging his head into my neck as I pick him up and carry him downstairs. (I still carry all the kids down in the morning if they don’t come down on their own, just because I can and it reminds me they are still my babies.) He goes to the bathroom then runs for his robe and then if he sees that his big sister awake, he tells her to “Stop it,” with a hurt face, even though she hasn’t done anything to him at all – retribution for all the times during the previous day that she’s pestered him. He’ll get to the breakfast table and act all surly because I won’t let him dump ALL the milk in his cereal like he wants to. Later, he’ll get dressed and put his shoes on the wrong feet no matter how much I remind him not to and despite the fact that I have written R and L on them (correctly) and he knows how to read R and L and what they stand for.

In the car on the way to school, he’ll say over and over “Put Frozen song on” until I put on the Frozen soundtrack so he and his twin sister can sing every last word and even act out “Let it Go.” (I won’t torture you with a video of that.)

The most interesting part of his day probably happens at school, which I am not privy to. But I can tell you that his school is an incredible place, where teachers have great respect for their little charges and where the children often direct their own learning. My son has become quite taken by the camera this year, and his teachers tell me that he’d rather stay behind the camera than in front of it. They send me some of his work once in a while.

Here is a picture of one of his best gals being hugged by a teacher.

PreK 1

This shot shows my son multitasking. He’s talking on the phone, “Calling Mommy,” as he told his teacher, while asking a friend to pose for a picture.


Here are a few still-life shot from his classroom environment, including his shoes — placed correctly.



Image 7

I love photography, and it would be incredible if he made it part of his life. This thrills me so much!

After I pick the twins up from school, a typical day might include a visit to his speech therapist, or a trip to visit his occupational therapist at the horse farm, where he practices fine motor skills on horseback. Going there is like therapy for me because I get to enjoy the uncluttered outdoors and the quietude of nature and feel the sun on my face without kids pulling me in a million different directions. Other days, his twin sister goes to gymnastics – she loves it – or we just go home, eat lunch and take naps until it is time to pick up big sister from school. (Now that, my friends, is the kind of boring that I like.)

When we get finished with those things, it is time to make dinner. Of all the kids, my son is the one who asks most often to help in the kitchen. I usually cringe because I don’t feel like dealing with the extra effort it takes to instruct a child in the culinary ways,  especially a child that likes to lick and touch everything, and I mean everything. So we just wash our hands many times because I am trying hard not to shoo him away when he states matter-of-factly, “I gonna help.”

The other day I had him chopping mushrooms for vegetable soup with this super cool kid knife that cuts food but won’t cut skin. That was his only task, and then he was whisked away by his sisters to play outside in our backyard. I was proud of him for doing a good job — and proud of myself for having the patience to let him help – so I was eager to show us off to my husband when he came home from work.

“Can you tell Papi how you helped make dinner tonight?” I asked my son. He was stonewalling us, as per usual, babbling something incomprehensible rather than answering the question. Finally on my fourth or fifth try, he told his father:

“I put the poop in the soup.”

This kid is obsessed with poop, although just to reassure you, no poop was placed anywhere near the soup. It’s just a thing of his – and I guess a thing of ours, since we have spent the better part of two years training him to use the potty consistently and independently. At school, he and some of his best buddies make “poop soup” by stirring wood chips into puddles of water. And one day when I was making dinner, he came right up next to me, and out of the blue said “Whatcha makin’ Mommy, chicken poop soup?” (Um, no, son, I am not in fact making chicken poop soup, but thanks for asking.)

It’s fun to recount these tales about him, mostly because I just want people to know that raising a kid with Down syndrome is equally as wacky, frustrating, heartbreaking, uplifting and fun as raising any other kid.

I want to take this chance to thank some especially fascinating people who have made our son’s journey not just successful, but incredible. Everyone at school, most especially his two gifted teachers, has always done the utmost to encourage his confidence and boost him up as a full member of the community and as a student.

This is a typical preschool that happens to value all children, including those with special learning needs, and they have had much success in the past with children with Down syndrome, so my son is not the first. The wonderful parents in our class have told me that their children don’t notice anything different about our son and talk about him just as they would any other child in the class. When we go to school functions, he gleefully exchanges hugs like all the other kids and is just as quickly grabbed by the hand and led away to play. In these simple acts lies a wealth of happiness for this momma. Thank you all from the bottom of my heart.

These final shots reveal one big reason why he loves going to this school. Because he can be just like his twin, whom he admires above anyone else except his big sister. We put the twins in the same school but  separate classes because it gives them space to breathe and have their own identities. We feel they function best when they can do this little dance of being together and yet apart. When they separate and then come back into each other’s line of sight, a tiny spark is lit. And that spark ignites a million more, creating for all of us a life most interesting.

PreK 6

A teacher captured this sweet twin moment where he is watching her on the playground from inside his classroom.

Prek 7


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And the Winner Is…..

11 Oct

…..Colleen! We did our drawing last night and Colleen’s name was chosen at random.


Thank you to Tara, Mark, Alicia and Colleen for commenting on my post and entering the book giveaway. I love hearing from my readers.


I will be sending Colleen a copy of “The Teachable Minute.” I hope she enjoys it and I hope you all will check it out too!



Every Moment Counts: A Book Giveaway

8 Oct

We are Luddites here at Modern Messy, at least according to our kids. We don’t have any iPads for them to play with and they are very rarely allowed to play with our phones. Nevertheless, they still have managed to learn how to navigate a computer and they do quite well on our laptops and PCs.

And even though we try to limit their screen time on these devices and on TVs too, the lure of putting them into “electronic zombie mode” as I like to call it, is often too hard to resist. It’s the only way to keep them quiet! But resist we must, and into this terrifying void comes a book that is perfect for our time.

Just released today, it is called “The Teachable Minute: The Secret to Raising Smart & Appreciative Kids,” by Dr. Connie Hebert. Its premise is simple: throughout our daily routines and outings with our kids, there are hundreds of little moments we can grasp in order to share knowledge, teach a lesson or just have fun. She said we need to minimize our use of devices when kids are around and use the time to show, ask and teach. Technology is not the most important thing, she says, THEY are. She recounts a sad story about a little boy at lunch with his mom.  He was trying to show her what he was drawing and engage her in conversation. The entire time, she never looked up from her phone — not once. This makes my heart hurt, especially for all the times I probably tuned my kids out in favor of the computer. I think we all can use some help in this area.

The book is a quick read and even if you just pick the parts you like and try to do one or two things she recommends, you will feel like a better, calmer parent. (Keep reading for how you can win a copy in my Book Giveaway!)

The book is divided into sections based on the places people typically go with kids — the gas station, the grocery store, the post office, a baseball game, the dentist’s office, the zoo, the rest room (a great place for teaching kids the words “men” and “women” or “family”)  — or the parts of your house that are meaningful to them — the kitchen, the yard, the the dinner table, the bathtub. She has these really fun and simple ideas for relating an idea to the activity in question and her suggestions are labeled for both little kids and older kids. For instance, in the bathroom you can teach the littles the concepts of Hot and Cold and think of other words that start with the same letters. And you can teach them how to scrub the tub, she says! Awesome, sign me up. For older kids, she suggests getting them thinking about how the water reaches the bathroom faucet or what they would do if the toilet overflowed or the sink clogged. (I guess “Run and get your father” is not the answer she was going for?)

More poignantly, she also has suggestions for teaching them about what happens at a hospital in case they ever have to go there (our twins did) and what to say at a funeral to those grieving a loved one (we’ve been in that situation too). The ideas are very straightforward and would be helpful to any kid in that situation. The key is just making the foreign accessible and practicing what to say or do.

I personally learned some very practical information, such as in the section on taking your kids to visit a college campus. What an interesting idea for a day out, by the way. And it’s free! She gave a tip for teaching older kids to stay safe in parking lots or dark streets, especially if they feel someone is following them. Start walking fast in the direction of your car or dormitory and call out “Hey, I’m coming! How are you?” This will make the follower think there are people around. Now that’s news you can use. I hadn’t thought of that before, but that’s a good tip for anyone.

Dr. Hebert is someone I met in my online travels and interviewed for a great post about encouraging a love of reading in your kids. After that, she kindly sent me her book and asked me to write a little blurb for the cover, which I enjoyed doing.  I think my readers would enjoy the book too, so I have a little treat for you. Anyone who responds to this question with a comment below will be entered into a drawing for a copy of the book. I’ll keep the contest open until Thursday night and announce the winner on Friday morning.

Here’s the question: what is your best tip for turning a boring or stressful part of your day with the kids into a fun moment?

No judgments here. If your answer is “Stuff ’em full of jelly doughnuts,” or, “Throw a smartphone in every grubby hand,” so be it! My two favorite things to do are turn on some singalong music (and that could be anything from Mother Goose to the Beach Boys to the Ramones) and talk in silly voices. I have this super goofy persona named Franz that I bring out when the kids aren’t listening to me. My oldest is tiring of this, so for her I often will try to think of some absurdity that begins with “Imagine if…” She’s very good at it too. She likes to imagine what it would be like if we had 100 copies of our twins. Or what it would be like if birds were wearing hats made out of newspaper and betting on horse races. (Actually, it is me who wonders that, but who’s keeping track?)

OK, so ready, set, go……


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