Big Boy Bed Brandon is 3. He was in a crib up until about a month after his third birthday. This was fairly old to still be in a crib. He had the ability to climb out of his crib for more than two years before we made the switch. But he loved his crib, and bedtime was easy peasy for me, so we went with it. He climbed out a couple times, but that was a rare occurrence.

Brandon takes a long time to fall asleep at night. He always has. He just can’t seem to shut his little racing brain off. When he was in the crib, it wasn’t that big of a deal because even though he could climb out, he rarely did. All he had to entertain himself was his imagination and his blanket.  Sometimes I would hear him belly laughing, just cracking up hysterically, and I would have no idea why. I knew that transitioning to the big boy bed was going to be a task. I started week one on my fall break at work so I’d have the flexibility for several late nights in a row.

The most important things I (try to) do are…

img_5295 1. I don’t give up. No pleading, talking, scolding, reading to him, etc. He has to lay there until he falls asleep, and that is that. I just keep putting him back in bed. No muss, no fuss. No reaction to his antics.

2. I’m consistent. I don’t let him sleep with me one night or have a toy another night, or allow him to put a foot on the floor one night and then not let him the next night.

3. I downloaded an audiobook (free from the library) to help me pass the time, especially in that first couple weeks when I spent most of the time in his room.

4. Nanny cam! Staying in his room was boring, frustrating, draining, hard on my body and not how I wanted to spend my evening after I long day at work.

5. I installed a light switch guard so Brandon can’t turn on his bedroom light. This tremendously cuts down his desire to get out of bed.

6. I put a doorknob safety cover on the door. This is a safety issue. It prevents him from trying to walk downstairs in the middle of the night, climbing the catwalk rails or getting into some other sort of trouble.

7.I was off work for week one of the transition. I needed to be able to stay up super late to make sure Brandon didn’t get out of his bed.

If you’re wondering, here’s how it went for me…

Night 1:
Brandon didn’t nap at school today. So, my first thought is, “Yes! He’s going to pass out at 8 and sleep in his big boy bed all night long without a fight. We’re sitting at the table eating dinner, and I’m pleased. He’s happily eating his mac ‘n cheese while I am eating a sandwich. He’s zonked. He’s passed out… in his high chair, mid-bite, at 6:30 p.m. So I think, “OK, this is still not so bad… he’ll be up at the crack of dawn, but at least I don’t have to fight him to stay in his bed the first night. He’ll wake up and realize, ‘Hey! I sleep in a regular bed now… cool!'”

I put him in bed. He’s still asleep. I turn out the light and creep away. At 8:30 I hear the pitter patter of his little feet running around his bedroom. He took a two-hour nap and woke up pretty much right at bedtime. Sigh. He didn’t go to sleep until 2 a.m. I lay on the floor next to his bed, dozing in and out of sleep, waking up every 15 minutes or so to lay him back in his bed. Night one was a just a bust.

Night 2:
Brandon has realized he thinks it’s funny not to get out of bed, but to almost get out of bed. He’s still in bed, but he has one foot on the floor. Or he’s still in bed, but he’s laying the wrong way. He’s still in bed, but his legs are hanging over the rail. Whatever. If I move him every time he’s not laying down appropriately, I’m just giving in to this game. In fact, I’d be losing the game. Once he realizes he’s getting zero attention from me (positive or negative) his shenanigans are fewer and further between each other. He gets out of bed only twice. I hear the snoring begin at 11 p.m… music to my ears. Can I really be this lucky getting him into a big boy bed?

Night 3:
I put him to bed at 9:30 (later than normal) to make sure he’s tired. I start off sitting next to his bed, facing the door. He gets out of bed, and without looking at him or talking to him, I put him back in bed. This happens repeatedly. One time he almost makes it to the light switch. He’s sure messing with me tonight. He thinks all of this is hilarious. On roughly the eighth time, I can tell I’m close to losing my cool. I put him back in bed and walk out of the room. I take a deep breath — several deep breaths actually — and count to ten. I walk back in, and of course he’s out of bed, so I put him back in, still not saying a word. I fade myself out by inching my way to the door every few minutes. Eventually, I stand just outside the door with it cracked so he knows I’m still there. He doesn’t get out of bed for 15 minutes, so I shut the door. I stand outside the door for 30 minutes, and he doesn’t move, although I can hear that he’s still awake. I go down to bed, and he doesn’t get up the rest of the night. I don’t know what time he actually fell asleep, but he did stay in bed. I’m so glad I didn’t give up.

Night 4:
It’s 9 p.m., and he’s asleep in the car on the way home from Nanna and Poppy’s house. Yes! That was how night one was support to go, but hey… if there’s one thing Brandon has taught me, it’s that life doesn’t work out just how you plan.

Nights 5 through 14 are all about the same. He lies in bed, and I lie next to the bed. He makes noise and wiggles around, but for the most part he stays in bed. It’s time to start fading out so I don’t have to lie on the floor for two hours every night waiting for him to fall asleep.

I start fading out by slowly inching my way to the door, eventually just standing outside the room out of his view. If he gets up, all I have to do is walk in the room, and he’s already darting back to his bed before I can even get to him.

Night 15
Why didn’t I think of this before? Nanny cam! Now I lay Brandon in bed and watch TV in the bonus room with my phone in my lap, streaming video of Brandon in his room. I can be up and putting him back in bed before he even makes it to the light switch. I couldn’t have used the nanny cam any sooner than this, though, because I had to set the foundation for him knowing he has to stay in bed.


Update, Dec. 19: I’m over the moon about Brandon’s progress in his big boy bed. It took a lot of time, patience and late nights, but now I’m at the point where I put Brandon in his bed, and he doesn’t get out. I don’t have to go in his room at all to put him back down. It’s been this way for at least a month now. It’s so freeing. All kids are unique in their progress, but these things worked for us. I’m so proud of my little man!

This post originally appeared on Ramblings of a Special Mom.

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CRdadBeachprofile2 For many new parents of a child with Down Syndrome, it’s far too easy to focus on the diagnosis and the challenges. It’s far to difficult to imagine the wonderfully rewarding and simple everyday stuff that actually makes up the bulk of our lives.

But over time, the looming enormity of the diagnosis begins to give way to the unveiling of the character, personality, quirks and needs of the child behind the label. Your emphasis on the big, bad diagnosis and fears of the known/unknown are slowly replaced, until finally you get back to where you were supposed to be: thinking of your child as a child, not as a disabled child. You learn more and more about the uniqueness and capabilities of the real child and care less and less about the larger world’s stereotypes and emphasis on perceived disability over actual ability.

So, with that in mind, even though in 1994 I couldn’t have imagined it any better, here’s a bit of what happened yesterday…

Connor, who will turn 6 in July, started my day off on a bright and sweet note by saying to me, with a charitably reassuring tone, “Daddy, you are so handsome! You are a handsome boy!” Now, he said this to me even though I’m neither, and I had a mean case of bed head, was bleary-eyed and unshaven, and had a bandage covering a scrape on my nose. He kept saying, “I’m sorry, Daddy, let me kiss!” offering to peck my nose.

During breakfast he recapped his school day, when he’d been class leader in his a.m. kindergarten class. The leader has a variety of responsibilities: reading the daily plan out loud, counting the boys and girls in attendance, checking the weather outside and setting the weather wheel display appropriately, leading the class in the Pledge of Allegiance and then leading the line of kids to and from the playground. I asked how many friends were in class, and he told me “Eleven boys, eight girls. Nineteen friends!” And then he put his hand over his heart and recited the Pledge of Allegiance for me, something he’s done for months now. It amazes me and brings me to tears each time.

Later, we were doing yard work, turning over and mulching the garden beds. We were having a great time inspecting worms, whistling back at the birds, spreading mulch and generally getting pretty dirty. At one point he said, “My hands are yucky! Dad, show me your hands!” I did and he said, “Hey, you’ve got yucky hands, too!” So we laughed at our yucky, yucky hands and kept an eye out for more big, fat worms to pick up and let tickle our palms.

In the evening, as dinner wound down and it was time to go up for a bath, my tired and self-satisfied boy slid down from his chair, grabbed his dessert bowl and spoon to take over to the sink (unprompted!), turned, stopped in front of me, got that glint in his eye and said slowly, clearly and dramatically, “Daddy…you…are…my…best…friend!”

CRBTmighty It was a wonderful day to be a dad, to be his dad.

It’s in such stunningly simple and precious moments like those that the pain and significance of many past fears and struggles simply melt away. We don’t know what lies ahead for us, but the power and promise of that kind of love keeps me going even when I feel overwhelmed by self-doubts about my abilities to be the kind of man and father he needs and deserves.

New parents — and particularly new dads — need to realize that while they can’t make the Down syndrome go away, there’s still an infinite amount of good they can do in their child’s life. There’s tremendous success and deep satisfaction to be found in helping their child realize his or her own potential. There’s no achievement in work or business that will ever match the pride and joy I feel when Connor achieves something new.

While I still may struggle a bit to redefine my measures of success in this world, this society, this life, one thing I know for sure is that I’m making a difference in his life, and it’s the most important thing I have ever done or ever will.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This is a powerful and unflinching look at a very serious condition.

Sabrina Benaim, 26, is a spoken word poet from Toronto who struggles with depression and anxiety, according to her website. In the performance below, she spectacularly articulates what it feels like to live with these conditions and the frustration that comes from trying explain herself to others.

Watch Sabrina Benaim’s “Explaining My Depression to My Mother” at the 2014 National Poetry Slam in the video below:

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

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Differences surround us. They can define us. They can hurt and separate, shape us and inspire us.

In fifth grade, the last thing most people want to be is different.

That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be over; he kept saying, “Bus, bus, bus.” I was unsure what to think at first, but I knew, much like me, Caleb wanted the day to be done. But that seemed to be where our similarities stopped. He was unlike most of the other fifth graders I knew.  

Caleb has Down syndrome.

He spent most of his time in a different classroom than the rest of the other students. He often sat in a different section of the cafeteria. He spoke differently; he acted differently.  

But our differences didn’t scare me. In fact, our differences brought us together.

Around this time, I became involved in the Adaptive P.E. program at school. The program was voluntary and allowed me to work with my peers with special needs. I definitely wanted to be a part of it. Not only did I enjoy the program, but I learned more about Caleb.

photo (18)

Every day at lunch, I would sit with him. I thought this would be tough at first, because I was unsure how to interact because of our differences. But it was actually fun. After lunch, I would walk Caleb to P.E., and we would play together. We would bowl. We would dance. We would laugh.

And I began to look forward to spending time with him.

Others didn’t understand what was on Caleb’s plate, like I did. Others judged him. They looked at him with strange faces. They excluded him from activities.

One day, at recess, this all changed.

Caleb and I ventured outside to play soccer together. I assumed the game would only be the two of us. But much to my surprise, all of the other kids joined us. And this time, no one judged Caleb. No one made fun of him. No one left him out. It was Caleb’s soccer game, and I stood in amazement and happiness when I noticed the other kids give Caleb the ball and let him score. 

Caleb has taught me that it’s OK to be different. He’s reminded me to treat others the way I want to be treated. I know, without a doubt, he is out in the world somewhere, teaching others this same lesson.

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IMG_6746 I’ve been to many parent/teacher conferences. I have three typically-developing children — well-behaved, high achievers. In these later years of their schooling, I’ve received a lot of forms with “No conference necessary at this time” checked off. In the early years I went in to confer with teachers, who, to my surprise, never wanted to talk about the sheer wonderfulness of my darlings. There was always a problem. Most of the time the problem was talking in class.

“I’ve tried him in every seat in the room,” my oldest’s first grade teacher complained in her beautiful Irish brogue. “Finally I put him in the back and he talked to himself!”

It was the same with my two daughters. All I could do was say how sorry I was that they were disrupting the class, promise to talk to them, and do so. Then I waited for maturity and the passage of time to do the real work. I myself was often written up as the chatterbox, my name chalked on Mrs. Turtur’s blackboard circa 1976.

Now I have a son in kindergarten who doesn’t talk — or walk or see. When I go in for a conference (and it’s always necessary) I already know we won’t be discussing his sheer wonderfulness. The life and education of a special needs child is a continual problem-solving process, and I’ve become a de facto member of the Child Study Team.

Last year I went in to meet with T’s TVI (Teacher of the Visually Impaired). They’d been working on nesting and stacking cups. T uses an adaptive activity chair with a tray in these sessions, and Miss R. told me when he grows frustrated with the activity, T pushes the cups off of his tray with a sweeping arm motion.

“But Mrs. V. [my son’s aide] has gotten very good at catching the cups in mid-air and putting them right back,” Miss R. assured me. “So… lately he’s started throwing them backwards over his shoulder, instead.”

We looked at each other for a moment, and then I burst out laughing. Miss R. did too.

“I know… it’s wonderful, isn’t it?” she said. “So typical for his age, so creative…”

“So naughty,” I filled in.

It’s so hard for T to make himself known as a person in the world. At home we know him well, but it’s hard sometimes for us to understand what he wants and needs. He has only a few signs and sounds he uses to communicate. He relies on others to move him around and bring him things. We make so many decisions for T, and many of them are guesses.

I never expected that my heart would swell with joy when I heard my little boy was doing something naughty. I went around bragging about it for days. He’d given me the gift not just of rebelling against something, but finding a new and better way to rebel when thwarted. Sometimes, when I worry, I take that memory out and picture Miss R.’s impression of T tossing a cup over his shoulder with determination and aplomb.

Naughty — but also very nice.

The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
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