A Walker in the Park

Check out this happy camper showing off his new reverse walker!!

Henry's physical therapist hooked him up with this walker to help Henry get some practice walking. I will admit, I was pretty skeptical about the idea of Henry using a walker because he was never successful in walking with the "push toys" that pre-walkers often use for practice. Like this wagon that Calvin used to push Henry around in ;)

Or this one, also given to us by Henry's PT.

With the push toys, Henry was always more interested in chewing on the handles or playing with the toys on the front than he was pushing them. We could never persuade him to really walk with a push toy at all. 

He cruises around the furniture really well, but cruising is moving sideways and he needs practice walking forward. We have been helping him walk by holding his hands or his hips. The reverse walker will allow him to be more independent as he works on walking and I'm very happy to report that he is much more willing to actually walk with it than he was with the push toys!

We brought his walker on our camping trip last weekend. Check him out in action! Steering is going to be a problem for a while, I think... But, hey, he's on the go! One step at a time, as the saying goes!

What I Love About My Kids' Therapists

When Henry was about to start speech therapy in the spring, I was really unsure about the whole thing. To me he seemed so far from being able to communicate that I felt like we were in for a whole lotta frustration. On the other hand, I knew that speech therapy was supposed to help him learn to communicate and he certainly needed help, so off we went. 

His first day of group speech therapy was pretty disastrous. He couldn't sit still, he kept fussing, wanting his bottle, wanting to get on the floor... I was thinking,  He cannot do this. He is not ready. This is for, like, big kids. He has the mentality of a baby. He can't even sit in the chairs. He can't sit and listen. He can't do these activities. He can't do any of this! This is a huge mistake. 

The therapists assured me that every kid's first day looks like a hot mess. I suspected that they were just trying to make me feel better. 

But over the next few sessions, the more I talked with our group therapist, Monica, the more I started to come around out of my haze of he can't do this. For starters, we got him a chair with a buckle so he didn't have to sit in my lap. Monica started outlining some goals for Henry. She would tell me things like, "He's making good eye contact. We can work on getting him to direct his gaze to follow someone or something." And, "He's doing a lot of babbling, we can work on encouraging him to imitate sounds." When we would do activities with the other kids, she would say "Henry's goal is just to ______," basically simplifying the activity to something reasonable for him to do. 

When I started speech therapy with Henry, I was so hung up on all the things he couldn't do and how incredibly long I imagined his journey to being able to communicate would be. I kept thinking some kids like Henry never talk, and that made me afraid. And the fear clouded my ability to see what Monica could see.

This is what I love about working with our therapists. Not just Monica, but all of them. When they look at Calvin and Henry, they see what they can do right now and what they can learn to do next. 

Their view is not clouded by fear or anything else. They care about Calvin and Henry, they want to see them grow and succeed, but they don't have all the emotional baggage that I carry for my kids. 

They are not trying to look decades into the future. They are looking at the next step. What can we work on right now? 

And it's so important for me to be reminded on a regular basis of what they can do right now and what they can learn to do next. I need to hear those things to help me shake off the fear. To bring my focus back to the present. 

As I think about Calvin getting ready to start preschool and start work with a new speech therapist I hope sincerely that these new professionals in our life will be able to do the same. I hope they will see all that he is capable of, and his potential to learn. 

I am very grateful to all the therapists working with my kids now and those we have worked with in the past. Thank you for helping Calvin and Henry and thank you for helping me. 

Thursday Thoughts: Speech and Preschool Worries

I know I originally said my Thursday theme would be thankfulness, but I wanted to do something more open-ended. I need a day when I can just write about whatever is on my mind. 

And Calvin's speech problems are heavy on my mind this week. 

He talks a lot at home now. He knows that, for the most part, I understand him and sometimes he uses sign language or just gestures to help clarify what he's saying. He can have a conversation with me, tell me what he is thinking about, ask for things he wants. He has opinions, he has complaints, like any other 3-year-old. He says funny things, he even sings songs. And I can figure out what he's saying or singing. I understand him because I spend the most time with him by far. 

Good news is that we do think the surgery he had last March to repair his submucous cleft palate has made a difference. He sounds less nasal and he seems able to create the pressure he needs to produce sounds. But his articulation problems are severe. It's like his brain and his mouth muscles have the hardest time figuring out how to make certain sounds. He has to concentrate so hard to put his lips together and say "mmm" or "ba" and there are some sounds he can't figure out how to make at all. 

Sometimes I forget how problematic his articulation is because I'm so used to the way he talks. Other people cannot understand him like I can. Especially other kids. In fact, he doesn't even try to talk much to other people besides myself and James. I think he knows they won't understand him. But it doesn't stop him from being social and friendly! He just relies a lot on nonverbal communication, which he has become really good at - body language, gestures, facial expressions... and it always helps if the person he's trying to communicate with knows a few ASL signs. 

This is why I'm so worried about him going to preschool. He's so clever and capable. He's independent and social. He's even careful and thoughtful. But what is he going to do when no one understands what he says? How far is that nonverbal communication going to get him in a school setting?? How will he show his teachers and classmates how much he knows, how much he can learn, if they can't understand him like I can?

He will still get speech therapy. In fact, his speech therapist will be right there at the school, and his speech doctor at Stanford is going to try to get him increased therapy sessions. 

Learning to communicate without me there to translate could push him to make progress out of necessity. 

And we can get him language boards or let him use his talker app if it seems like he needs that kind of thing. 

But I am afraid it will break his little heart. 

I'm afraid he'll get frustrated and feel hurt. I'm afraid that the frustration will diminish his outgoing spirit. 

I know that kids are resilient and I believe that Calvin is resilient. My hope is that the benefits of a preschool experience will outweigh the difficulties. My prayer is that the challenges will help him discover that he is able to work hard to overcome them. That's how people learn, right? That's how we become strong and capable - by facing challenges and finding ways to work through them. 

In a way, I'll be right there with him doing my own learning and growing as I work through the challenges of figuring out how and how much to support him, and coping with letting go and giving him the chance to get out there, be himself, and learn for himself. 

It's so scary, y'all. I have so much worry and I'm trying so hard to let go of that worry and hold on instead to the hopes, the goals, and the good possibilities. Is it this hard for every parent to send their kid to preschool?? 

Bye Bye Binky

If you have seen many photos of Henry, and especially if you have been around Henry in person, you may have noticed a certain accessory that he has very rarely been seen without...

Oh yes. I'm talking about the precious pacifier. 

He didn't always have it in his mouth, but we always kept it clipped to him so that he could have it on hand whenever he needed help calming down, or if he was having an oral sensory moment and needed something safe to chew on. Because of Henry's cognitive and sensory differences, we felt like he really needed that paci - not that he needed it constantly, but that when he did need it, he really really needed it. To be perfectly honest, I was often really friggin' thankful for that pacifier because I could not imagine how to get a hysterical Henry to calm down without it. And sometimes, the paci wasn't even enough calm him down. 

When we weaned Henry off of his baby bottles, I leaned heavily on using his pacifier to replace the comfort sucking from the bottle. It made bottle-weaning go really smoothly. When I started thinking about weaning Henry from his pacifier my first thought was something like, Heck No. Never. He can take it with him to Kindergarten. He can take it with him to high school!! Don't take my paci away!

Because of Henry's cognitive delay, I knew that we weren't going to be able to do anything like the "Binky Fairy" or passing down the pacis to a younger baby or anything that involved reasoning or explanation. I also knew that Henry would likely still have oral sensory needs and difficulty self-soothing well beyond a reasonable age of using a pacifier. So I figured the best thing would be to swap out the paci for another, more age-appropriate, source of comfort. There's another mom of a Dup15q kiddo who I follow on Instagram. I often see pics of her son, a couple of years older than Henry, wearing a necklace with a teething pendant. I've also seen older kids who wear "chewy" necklaces or carry small "chewy" toys around with them to help them deal with sensory or anxiety issues. So I thought, Brilliant! I'll just swap out the paci for a chewy and it'll be totally fine!

Over the past few months I started taking away Henry's pacifier little by little, trying to get to the point where he would only have it for naptime and bedtime. That never really happened because inevitably, at some point during the day he'd have a big fit and I'd give him the paci to try to calm him down (even though it didn't always work).

As summer started to wind down, I started feeling more serious about moving past the pacifier. So last week I went for it and finally made him go a full day without it. Instead of the paci on his little clip and ribbon, I replaced it with a teething pendant, per my brilliant plan.

Here's the thing. He hated it.

At first he ripped it off and threw it on the floor. A few times.

Then he basically ignored it until he was upset or tired, and when he would reach for what he thought was his paci and came up with the pendant instead, he would get even more upset and try to rip it off again. It was like that for about two days. I kept on clipping it to him in the hopes that he'd warm up to it, but instead he eventually started ignoring it entirely like it didn't exist.

So my attempt at replacing the paci was a bust. I even tried putting together a basket with a variety of toys and materials with different textures to see if there was anything that he really enjoyed biting or sucking on.

He had a lot of fun with it, but there was no clear winner. 

Those first two days were the hardest. The first No Binky Day also happened to be a day when we were out at a big picnic with Henry's speech therapy school and yes, of course he had a meltdown while we were there for all the other teachers and parents and kids to see. It wasn't the worst meltdown he's had, but he was pretty inconsolable and I was trying everything I could think of to calm him down. In the ergo, with the hood up, with the hood down, bouncing, walking, singing, swaying, offering him the stupid teething pendant, offering him water, offering him food... finally I put him in the stroller and walked around and that worked as long as he couldn't see me! I'm sure it was quite the show, but luckily Calvin was off playing and of all the audiences for a meltdown I can't really think of a better one than a bunch of therapists and other special needs parents with their kids!

I was really terrified that night to put him to bed without the pacifier, but it actually went miraculously fine. It has been a full week now and I have stopped making him wear the teething pendant, since it's clear he has no interest in it! He's sleeping fine without his pacifier and during most of the day he's perfectly happy without it. 

When he starts to feel upset and it's hard to console him, I do miss having the pacifier as a quick fix - or at least the illusion of a quick fix. But it wasn't truly reliable anyway, which kind of proves that he didn't need it anymore. I think it'll just be a learning process for us all as we get used to finding ways to help Henry calm himself without his pacifier. He is getting to be such a big boy after all!

I was so scared to take away his pacifier, especially when I saw that there was clearly not going to be an easy replacement for it! But I think we're past the hardest part, and I'm feeling relieved. One more hurdle crossed. One more milestone reached. This counts as a milestone right? I say yes. 

Anybody else want to share about the Bye Bye Binky Blues? What worked for your kids? 

Henry Wellness Update: Looking, Listening, and Pre-Language Skills

I feel sure that without Henry I would never have had the chance to appreciate the very subtle elements of emergent communication. Here are some of the ways that Henry, though still nonverbal, is showing us how much he understands and helping us to understand him.

Good looking, Henry!

At speech group, Henry is sitting in his special chair (with a buckle so he doesn't fall out) at a small table with other kids and their parents. His speech therapist, Monica, calls his name. Henry looks up, looks at her and makes eye contact. Monica cheers, "Good looking, Henry!" and holds up two toys. "Do you want the blue one or the red one?" she asks. Henry looks from her to each of the two toys and then grabs one with both his hand and his mouth. 

He didn't say blue or red, or even point to indicate a choice. But he looked at Monica when she spoke to him, and he looked at each toy before grabbing one. It's a tiny thing, but directing his gaze with intention shows that he understands what is going on. And when Monica says "Good looking!" she's not calling him handsome ;) She's letting him, and me, know that he did a good job of making eye contact at an appropriate time and focusing on her while she was talking to him. The therapists call it "shared attention."

Sometimes Henry is too distracted to pay attention when someone is talking to him. Sometimes his other sensory needs get in the way. Another day at speech group, he just couldn't seem to stop biting the table long enough to look at Monica and listen to her when it was his turn. When that happens, it's frustrating. For us the parents and therapists, and possibly for him. But more and more we see him becoming able to do things more intentionally and less impulsively. More and more we see that he is able to pay attention to someone speaking to him and create that shared attention.

There are other ways in which Henry's gaze shows us what he understands. One of his speech goals is to respond to "distal pointing," or looking at something far away when someone else points it out to him. So if I say "Look, Henry, it's Daddy!" and James is across the room, the goal is for him to follow my gaze or my gesture and focus his attention on his daddy. He does this best with people. I think it's because the names for people are more familiar to him than the names for objects. If I say, "Look at the airplane!" and point up into the sky, he generally won't look up. Because maybe "airplane" doesn't mean much to him yet. But this speech goal isn't really about words he does or doesn't understand, it's about knowing that if someone says "Look over there!" and points, then you're supposed to look where they're pointing. And occasionally he does it... but mostly we're still working on it.


Sing Me a Song

Henry sits in his high chair at home with his other speech therapist, Holly. Holly is doing songs and rhymes with him. "Open... shut them. Open... shut them." Holly sings slowly. When she says "open," she holds Henry's hands apart. When she says "shut," she brings his hands together as though he is clapping. "Give a little clap, clap, clap!" she sings and she helps him clap his hands three times. "Open... " she repeats, pulling his hands apart - but then she pauses. She waits and watches him. He waits and watches her, eyes wide, anticipating the next part. A moment passes and then Henry pulls slightly on Holly's hands. It's a tiny movement, the slightest pressure, but that, combined with the expectant look on his face, shows that he knows what comes next. Holly responds with the next part of the rhyme, and a nod to let him know he got it right. "Shut them!" and helps Henry bring his hands together. 

Henry has really been interested in songs and rhymes lately, and I think it's because he is just starting to understand them. He is starting to be able to follow along to the words, the rhythm, and the gestures. In the past, he wouldn't really attend to songs and hand motions like he does now. Now, he is really watching and listening. He's starting to get it. I feel like it won't be long before he can do some of the hand motions himself!

His favorites are "If You're Happy and you Know it" and "Open, Shut Them."


Let go! 

At breakfast, Henry has snatched his spoon out of my hand and is chewing on the handle. I need it back to feed him another bite. "Henry, give me!" I say, and I hold out my hand. He takes the spoon out of his mouth and looks at me out of the corner of his eye with a sly smile. He continues to clutch the spoon and waves it around. "Give me!" I say, still holding my hand out. Henry looks at my hand, then back at my face. He smiles broadly. Finally he holds out the spoon over my outstretched hand, but his chubby little fingers are still holding tight. "Thank you, Henry! Now let go!" I say. But he doesn't, and I pry his fingers open as I say again, "Let go. Thank you."

Henry is learning to follow some simple directions. "Give me," "let go," "come here," "put in" and "look," to list the ones that come up most often. He definitely understands "give me," but he's so funny about it! He almost always does this thing where it's like he's trying to be sneaky and not hand it over even though he knows he's supposed to! And then when he does hand it over, it's like his hand doesn't get the message and he can't figure out how to loosen his death-grip on the object. The same thing happens with "put in" when we're putting toys in a bin. He'll finally hold the toy over the bin, but he still has to figure out the part where he's supposed to open his hand and let it drop in!

It's been recommended to me to keep the commands short and simple: just one or two words. So I don't say, "Give me the spoon please." I'll usually just say "Give me" or something like "Give me spoon" with a one-word name for the desired object.


More More More!

Henry sits in his high chair during lunch. I tear off a small bite of PB&J and put it on his tray. He scoops it up with one hand and pushes it into his mouth. Since he's had a few bites already and I know he's not famished, I pause before offering him another bite. "More?" I ask. "Do you want mmmooore?" I exaggerate the word for emphasis. Henry says nothing, but bounces in his chair and claws the tray like he is picking up invisible bites. I take his hands and help him make the ASL sign for "more" and I say it again, "Mmmooore!" Then I give him another bite. 

Calvin is asking for something. I turn away from Henry to help Calvin with his lunch. After a few moments I hear Henry softly saying, "Mmmoh! Moh! Moh!" I turn back to him with raised eyebrows. "More? Oh! You want more! Good talking, Henry!" I cheer as I place another bite of sandwich on his tray. 

This is the closest thing Henry has to a first word! Not "Mama" or "Dada." Nope. For this guy, food is apparently the biggest motivator. He only says it for food, though we use the word and sign "more" for many other things. He won't say it on command, and he doesn't say it every time. It usually comes out in scenarios like this one where I've turned my attention away from him and he's ready for another bite.

He does a lot of babbling, and sometimes his babbling sounds very much like words but it's hard to be sure. He is even starting to imitate sounds. Here's a video of Holly playing with Henry and using bouncing to encourage him to vocalize.

Henry's pre-verbal skills give us a glimpse at how his cognition is developing. It looks like he's becoming more able to focus on specific things. He seems to be recognizing patterns, like patterns in rhymes and songs. He's starting to show that he remembers things. He's starting to show that he understands things we say. He shows us his sense of humor :)

There's some overlap between his speech therapy and his occupational therapy. Hand motions in songs and rhymes, using gestures and pointing to communicate, and that business about letting go of the spoon!

It has been eye-opening to realize that there are so many elements that play a role in communication, and it is so amazing to see them unfold little by little for Henry. It does seem a little strange that it's possible for him to have made so much progress in speech therapy without any real words or signs, but these pre-verbal skills that he's developing have already made a big change in his ability to communicate with us.


Holly and Monica, if you are reading this, first of all THANK YOU so much for all the support for Henry and for me. It is wonderful to get to work with you! Also, if there's anything here that I haven't got quite right, please feel free to correct me! I'm learning as we go.

More updates on Henry's development are in the works. One about his motor skill development, and probably one more about his eating/feeding.


Thanks for reading!!

Permission to Shake it Off

Henry's second birthday is a little more than a month away. It will be here before we know it! And I've begun writing some wellness updates to share about how much he is doing and learning. I set out to write one post that would include his progress with language, motor skills, and feeding. But I quickly realized I had so much to say about it that it really needs to be a series of posts instead of one terribly long one!

How exciting that there's so much to say about Henry's progress!

As I was working on the first of these wellness updates, I felt compelled to explain that the things he is learning, although new and exciting for him, are things that typical babies learn and do much earlier. I felt compelled to remind people that all his progress is still very delayed and slow-going compared to other kids. Almost as if to say, We're so excited! But actually, let's not get too excited. Sorry.

Like Debbie Downer.

What is up with that? 

That is totally unnecessary.

Why would I want to take away from the joy of sharing how Henry has grown? Why can't I just let myself be proud of how far he has come without insisting on a disclaimer about how far he is behind the norm? Why do I feel like it's important to remind people that he's different? 

If you read this blog, you know that Henry and Calvin have developmental differences caused by their chromosomes. I don't have to say it over and over again. It is who they are and I don't have to apologize for it or feel pitiable for it or hold back from celebrating when there's something to celebrate! Even if they had the expected number of chromosomes, their journey is their own. There would still be ups and down, struggles and victories.  

I think part of it comes from a desire to be humble as I'm bragging about my kids, but in a way I feel like I'm disrespecting them if I'm saying how far they've come and how far behind they are in the same breath. They don't deserve that. They deserve praise for how hard they've worked and how much they've learned and how far they've come. With no disclaimers. And no Debbie Downer.

That guilt, that worry, that fear... whatever it is that makes me feel like I need to temper my enthusiasm about Henry or Calvin's development, or wear their "differences" like a weight around my neck... That is something I do not need. And Calvin and Henry definitely don't need me carrying that stuff around.

So I'm giving myself permission to shake it off. 

It creeps up on me. And sometimes I need a reminder that it's ok to let it go. 

Thank you, Taylor and Elsa. 

Once I get those songs out of my head, I will get back to writing those wellness updates! Because I do have happy and exciting things to share about Henry! And he deserves uninhibited celebration. 

Other parents, does this kind of thing ever get you down? Or do I sound crazy?

Well, if this resonates with you at all, I give you permission to shake it off, too. ;)

Henry Wellness Update: New Year, New Skills!

Henry has been working hard and making a lot of progress over the past two months! Right around Christmas and New Year's, we took a couple of weeks off from all the boys' therapies and during that time a lot of exciting changes happened for Henry. It was really exciting to see his therapists again in
January and tell them all about how great he's doing :)


New Moves

In the fall, Henry started scooting around on his tummy and figured out how to push himself up into a sitting position from lying down. Now, at 18 months old, his arms and torso are strong enough to hold himself up on all fours!

He gets up on his hands and knees and rocks a bit, forward and back, and sometimes he'll give one big push with his knees and kind of slide forward onto his tummy :) Although he looks like he is ready to crawl, he isn't quite strong enough yet. The way his physical therapist explained it, he's strong enough to hold himself up on four points (two hands, two knees) - which is great! - but he needs to be strong enough to hold himself up on three points in order to crawl. He's got to be able to lift a knee and bring it forward, and that takes more tummy and arm and torso strength. But he's close! And working on it every day!

Henry reeeeaaaalllyyy wants to stand. He wants it bad. Every time we try to set him down to sit on the floor, he puts his feet down first and wants to stand with our help. He often pulls himself up onto his knees at our coffee table (train table) and in his crib. In his crib I have even seen him pull himself all the way up to standing! That only lasts a couple of seconds before he plops back down on his tushie :) But, when he gets up onto his knees at the train table, he can stay there long enough to reach for things on the table. And destroy parts of the train track, to Calvin's dismay... #henryzilla

New Noms

Henry is eating real food!! No more baby food for us!! Can I get an AMEN?!!

Cheerios, scrambled eggs, PB&J, pasta, chili, oatmeal, quinoa, green peas, black beans, broccoli... you name it!

Ok, not any anything. He doesn't really have enough teeth for crunchy stuff like raw veggies, so they have to be cooked, and meat is also a little too tough to chew unless it's ground, but I don't cook much meat anyway. The best part? He's not picky!! I cannot tell you how weird and amazing it is to have a child who will eat anything that I feed him without complaining. Wish my other kiddo would do that (I'm looking at you, Bean!). Henry has a big appetite too. He eats more than Calvin. His occupational therapist says that kids with low muscle tone have to use so much more energy to move their bodies, compared to typical kids, that they likely burn a lot more calories. So with all Henry's new moves, it's no wonder he eats so much!

He is learning how to feed himself, but by far I still have to feed him. He can feed himself things that are large enough for him to pick up, but soft enough to mush in his mouth once he gets it in there, because he hasn't figured out how to take bites from a large piece yet. Crackers and small pieces of cheese are perfect for him to feed himself. Fruits are hard because they're slippery. Cheerios are a little too small, but he sometimes manages to get one in without help :)

Henry has a history of difficulty with swallowing liquids. We've been using a thickener in his formula for almost a year now. But since his surgery he has been doing much better with swallowing and now he is able to take small sips of plain water from a spoon and even drink formula without thickener as long as it's in a bottle with a slow flow nipple (meaning that he can only take small sips, not big gulps).

Henry with his occupational therapist, Julia

 We have even started working on teaching him to drink from a cup. We use a special therapy cup that allows him to make the same shape with his mouth as he would with a regular open cup, but restricts the flow of the liquid so he is still taking small sips.

It's the same cup we used to teach Calvin and it came from Calvin's occupational therapist back when he was 13 months old. She called it a "dot cup" because of the three little holes that allow the liquid to flow out. I don't know if that's the real name for it...?

He is starting to look like such a big boy! 

As he is becoming more capable and more aware of his surroundings, communication is starting to be challenging. He doesn't have ways to tell us exactly what he wants or exactly what's wrong when he's upset, and his upsets aren't always the usual baby needs anymore (poopy, hungy, sleepy, ouchie). He had a speech evaluation recently and will likely start speech therapy soon, which will help both him and us have some guidance when it comes to communicating together. The therapist who came to do his evaluation gave me some helpful input on how to work with him on some communication skills. Simple commands like "come here," and "give me the ____" and helping him to start pointing/gesturing with his hands, for example. 

Henry and Calvin are also interacting and playing together more, and it's so sweet to see! They make up simple little baby games on their own. Like, Calvin will turn the lamp on and off and Henry will laugh and shout when the light comes on. They play peek-a-boo with pillows. They play a kind of fetching game where Calvin brings a toy to Henry in the high chair, Henry throws it on the floor, and Calvin brings it back. Over and over again with lots of laughing. They love to both get in Henry's crib and just kind of bounce around together :) Sometimes Calvin gets too rough with Henry. He's definitely figuring out the limits of what makes Henry laugh, and what makes Henry cry. And occasionally, he does seem to make his baby brother cry on purpose... but that's normal sibling/toddler stuff, right?? 

Hooray for Henry! :) Thanks for reading.

Any milestones or celebrations to share about your kiddos this week?

The View from Last New Year's

About a year ago, either just before or just after the first of the year, James and I went out on what must have been our first date since Henry had been born. My mom was still in town and she stayed with the babies so James and I could go out to dinner.

After dinner, as we walked the dark streets back to our car, I confessed something very sad to James.

I said, "I feel like we have nothing to look forward to this year."

 I feel like we have nothing to look forward to.


How could I say such a thing?? How could I feel such a thing??



At that time, Henry was 5 months old, which means I was 5 months postpartum. I would not doubt that I was suffering from some level of postpartum depression.

But the bigger burden I was carrying was the pain of coping with Henry's diagnosis. A diagnosis which we were keeping quiet about, at the time, except to very close family and friends. Another diagnosed genetic anomaly in our family. A diagnosis which, at that time last new years, still felt very much like an open wound.



I was grieving. Not for the beautiful baby that was Henry, but for all the things I believed that his diagnosis stole from him. And all the things I believed it stole from our family. I was filled with fear for him and for myself.

Will he ever walk? Will he ever talk? What will he understand?? 

How can I possibly care for two special needs children?

I am ashamed to admit it, but I feared that Henry would be a burden that I would never be free of.



I also felt guilty for having given birth to another genetically abnormal child. It is still very hard for me to truly believe that it wasn't my fault. I still have my doubts. Maybe if I had been healthier. Eaten more organic foods. Waited longer between pregnancies... maybe I could have spared my youngest child the challenges that lie ahead for him.


I was also angry. How could this have happened to us AGAIN?? Why us?? Why our kids?? It felt so unfair.



I had spent my pregnancy imagining all the things that would be good about having two boys so close in age. I thought our biggest challenge would be parenting such closely-spaced siblings. So the optimist in me was dreaming of all the ways it would be awesome instead of hard to have two little boys. I imagined how much fun it would be to see them running around together at the playground. I imagined that having a typically-developing brother close to his age might help Calvin with his speech development. I thought we'd be able to travel sooner, take family vacations sooner, because we'd be out of the diapers and bottles stage faster than families who wait longer to have their second children.

And when we found out about Henry's diagnosis it felt like all those dreams got ripped away. Henry would not be running around with his brother anytime soon. Henry would not be talking with Calvin or with anyone else anytime soon, if ever. We would not be out of the diapers and bottles phase anytime soon, if ever.



I had also spent my pregnancy imagining how wonderful it would be to have a typically developing baby. I dreamed of being able to breastfeed a baby, of seeing a baby hit milestones at the times that all the baby books say they are supposed to happen, of having a baby that I could fairly compare to other babies of the same age.

And I knew because of his diagnosis that with Henry, once again, none of those things would happen.




For me, the view from last New Year's was dark. I looked at the year ahead, the years ahead, and all I could see was struggle. Sadness. Loss.

I saw doctor's appointments and therapy sessions draining our energy and time. I saw myself dragging through each day, weighed down by the painful feelings I was carrying. I saw us missing out on all the things that would have been possible if we'd been a "normal" family.

I was wrong. 


And I spent all year proving myself wrong.



Somehow I pulled myself out of the despair where last New Year's found me.

I took my placenta pills and I saw an acupuncturist to help me re-balance my hormones. I went to the gym. I went to yoga. I started running. I started reading a daily (or almost daily) devotional. I wrote down my prayers. A few friends and I even formed a mama support group.

I had to take care of myself in order to be a good mama. I had to feel healthy and whole as a person, as me, in order to take on the other challenges that I felt I was facing.

The year did indeed hold many, many doctor appointments and therapy sessions, and even a surgery and a couple of hospital stays.

But I made every effort to make sure that our year was also full of days at the zoo, picnics at the park, walks in the woods, and visits to museums and aquariums. 

We even took a couple of airplane trips. To Seattle to see a friend, and then to the southeast to visit family.

We made birthdays and holidays special.

On our days at home, we did art projects and sensory play and built train tracks and blanket forts.

And Henry and Calvin grew and learned and were happy.



Calvin started talking. It's very hard to understand him, but his little brain has acquired a lot of language and he is always finding new ways to show us how smart he really is.

Calvin is also daytime potty-trained! He still wears pull-ups at naptime and night, but he wears underpants (adorable tiny Hanes boxer briefs!) during the day and he can use the potty all by himself at home, or tell us when he needs to go.

Though Henry had a rough time with health problems, we were able to help him with guidance from his doctors and with a successful surgery to clear his airway.

Henry learned to roll over. To sit up. To scoot around the room. And now he is working very hard to build up enough strength to crawl and to stand. He works so hard, my little guy.

Henry is learning to eat "real" foods. Table foods, like the rest of the family eats. Over this holiday week he has eaten scrambled eggs and green peas, a buttermilk biscuit, and even some turkey! He is also doing better with swallowing thin liquids like water or formula with less thickener. We may be able to move past bottle feeding pretty soon after all.

When I make sure our days and weeks are filled with fun things to do and interesting places to visit, it's because I want the boys to have lots of chances to see and experience and learn. But it's also because when they look back at their childhood, I don't want them to remember it as just a long string of doctor appointments. When we all look at our life as a family, I don't want it to look as bleak as I thought it would a year ago.

I needed to prove to myself that our life could still be full and rich and happy. That the babies' diagnoses did not rob us of a chance for a joyful family life. That I had no reason to be afraid.



Here on the cusp of another year, I am not afraid. I am grateful. I thank God for my beautiful babies and my beautiful family. I thank God for all the joy the past year brought and for the strength that got us through the challenges. I thank God for all our happy memories of 2014. And I thank God for the lessons I learned this past year.

Now I can see what I could not see a year ago. That no matter what hardships lie ahead, we are strong enough to do the work. And no matter what those hardships are, they are not the whole picture. We will always be able to make space for joy.

So this year, I can say that I believe we have plenty to look forward to.

More experiences to learn from. Plenty of laughter and love.


Happy New Year.

A Very Henry Christmas

We had a very merry Christmas at our house :)

Santa brought goodies for Calvin and Henry and there were more presents to exchange among the family. Lots of new toys and books and other fun stuff for everybody.

Cousins came over. Yummy holiday food was served. Our little home was abuzz with laughter and voices... smells of sweets and casseroles and fried turkey... Christmas music playing in the background... and toys and gifts and wrapping paper all over the place! Your typical Christmas day scene.

And it was wonderful and happy :) But it wasn't easy for our non-typical little Henry.

Henry is sensitive to loud noises and noisy places. He is ok with meeting new people or being around people we don't see often - but only if I am nearby. He is NOT ok with being left with unfamiliar people and if there are lots and lots of unfamiliar people, it is overwhelming for him. Even if they are people who love him very much and try very hard to calm him down and make him happy.

Sorry guys, it's not you... it's Henry :/

This is not news to James or me. We know these things about Henry. We have learned what upsets him and what calms him. Or, rather we are learning. Because, of course, as Henry grows and develops he changes little by little. But I don't think he will grow out of these sensitivities. On the contrary, I think he is becoming more sensitive as he becomes more aware of the world around him.

And it's ok. He is who he is. We can't change him, we can only try to help him. Help him deal with a busy and noisy world full of new and unfamiliar things. And not just deal with it, but hopefully find ways to enjoy it. And be happy! Because many busy and noisy and unfamiliar things are also wonderful things! Like Christmas day in a cozy apartment full of family and food and love.

So when I needed to be in the kitchen cooking and Henry cried and fussed at being left with anybody else besides Mama, I did what I needed to do for the both of us. I strapped him into the Ergo and did all my cooking with him right there under my nose. I delegated any tasks that I couldn't do with Henry in the Ergo, like moving dishes in and out of the hot oven, and my parents and cousins were happy to help. Henry calmed down and watched the rest of us from his cozy spot, safely snuggled up next to me. When it was time to sit down for dinner, I sat with Henry and fed him and myself. Other people served me food because if I tried to get up, Henry would cry. Henry spent just about the entire day attached to me until finally, it was time for him and Calvin to go to bed.

When Henry was asleep in his crib at last, I was so relieved. It had been exhausting keeping him close, keeping him calm, giving him my energy to help him feel safe and happy amid a very unfamiliar and noisy and busy day on top of chatting with cousins and cooking the food and trying to enjoy the day myself.

After Calvin and Henry went to bed, more cousins came over for more food and gifting. And tired as I was, it was nice to have more party to enjoy without my babies to worry about.

This is the first time that I really felt like a Special Needs Parent at a family gathering. It was the first family party where Henry's different needs were really apparent and in need of attention. What will I do next year when Henry is too big to be toted around in the Ergo?? I will probably need to make sure I'm not responsible for anything else besides Henry!

Parents with sensory sensitive kiddos, what do you do to help them through holidays and family parties?

Hard as it was, I really am not complaining. I'm just reflecting on the experience. I don't mean to imply that it was a bad one. I mean, it's not a bad way to spend Christmas - with your youngest baby snuggled up with you all day.

Parenting is hard work for all of us, after all, isn't it? And so is hosting a family party on Christmas day! Maybe it's a different kind of hard for parents with different kinds of kids, but it's also a different kind of happy :)

Henry and Calvin were thrilled with their new toys! Henry has come a long way with how well he is able to manipulate and enjoy toys and books and it was wonderful to see him pick up a big rattle-y ball - how strong he is getting! And grab little dinosaurs - how well he is grasping! And even stand at the table, with help, to see and touch the train set! And, as long as he was in my familiar arms, he shared his sweet smile and laugh with his grandparents and cousins. Friendly in his own way. And actually, he did let his great-grandmother Lola Coring hold him for a little while earlier in the day (before things became just too overwhelming for him). He loves Lola and she is more familiar to him than most other relatives because she lives upstairs and he spends time with her often. It is lovely to see Henry with Lola.

Calvin, of course, was the life of the party. He spent the day wildly playing with all his cousins and having a blast. He partied right through his naptime, and ended up crashing for a late nap just before dinner. He woke up grumpy, like he usually does, but his grumpyness didn't last long and soon he was back to being the life of the party and loving every second of playing with his cousins!

There was lots and lots to give thanks for. Lots and lots to enjoy. And we did.

I refuse to feel sorry for myself or Henry even when things are hard. He is who he is, and I'm his mama and we'll figure it out. Rejoice always. Pray continually. Give thanks in all circumstances.

For unto us a child is born.

Merry Christmas.