Wednesday, July 17, 2013

Siblings: An Update

I've been meaning to provide a sibling update for awhile. It was a year ago that I wrote about the challenges faced by the sibling of the child with special needs.

I don't know too much how other people choose to broach the topic of special needs with their other children. For our family it is a topic we decided not to address at all, at least for the time being. It was quite an unconscious decision at first - after all, Calvin was only two and a half when Juliana was born and there wasn't much point in trying to explain anything. But as the years have passed this has become more of a conscious choice. Why should I point out any of Juliana's differences? Calvin sees her purely - for who she really is. Why should I say anything to change that?

So I have not spoken to him about special needs or developmental delays. We've never told him that she has Kabuki syndrome. It's not that we hide this information, and he most certainly has overhead our conversations. But I have not gone out of my way to provide information. Calvin is too young to really remember life before Juliana was born, and that means he is also too young to remember a life before we spent hours each week running between therapy and doctor visits.

Recently Calvin and I were playing a role-reversal game and I asked him why we went to therapy. "We go to therapy so that Juliana can learn how to walk and talk" he said. Then I asked (and remember here that I am playing Calvin) "Why don't I go to therapy too?" I have often wondered what he thinks about some of the slightly older kids we see in therapy. Calvin responded "You do go to therapy, you stay with me!" So there you have it: no need to over explain things to young children.

However as Calvin is approaching his fifth birthday I've been realizing that soon things will change. He wants to know why Juliana is doing a specific activity and I have to tell him "that's because her eyes aren't straight." He wants to know why Juliana has to have blood drawn and I have to tell him "it's because she's a little bit sick." We recently had her fitted for SMOs and I explained to him that these would help her learn to walk. Again, I am keeping it simple and I'm trying not to burden him with too much information.

I feel very strongly that there has been an orchestrated plan in the birth order and the personalities of my children. I don't think I could have possibly asked for a better big brother for Juliana. He puts up with a lot: long hours in waiting rooms and a younger sister who often has demanded much attention. Despite that he is very kind to her, very patient with her, and he loves her dearly. It took a really long time for her to reciprocate those feelings. I felt like I was holding my breath: was there even going to be any sibling relationship? And then it happened and it happened beautifully. They like to play together, they like to be together, and they have very, very few negative interactions. Calvin is a great helper and he loves to show her how to do things. He is often very helpful in this regard when I am trying to do various therapeutic activities with Juliana.

At dinner tonight Calvin called across the table "Juliana, I love you!" I guess we're doing something right.

Monday, May 13, 2013

The ABCs of Neuroplasticity

Juliana has mastered the ABCs. This was taken right before bedtime and she loses interest in our "game" after a few minutes, so you'll just have to take my word for it: she knows all of her letters.

As if that weren't exciting enough, it's also exciting that she is repeating the name of each letter, that she can see the letters well enough to differentiate between them, AND that she can hear the sound clearly enough to know which letter I am asking her to find. 

We honestly didn't spend a lot of time drilling her prior to this pop quiz. In fact I am not sure whether I should feel chagrined over our lack of preparation (ABCs have been on my list of things to do, but we rarely got around to it) or if I should just feel amazed that she learned so quickly with such little guidance from us. I would estimate that we did the ABC flashcards approximately a dozen times, maybe a few more. She really loves these flashcards and pays apt attention to them. She also began to point to letters and wait for us to name them. 

This ABC knowledge isn't just a parlor trick to impress people; this kind of exercise forms new synapses and physically changes the brain. This is important because "processes that are not used or are inhibited during their critical period will fail to develop normally later on in life" (1). It is experience that determines which synapses will be strengthened and which will be pruned; the connections that are activated most frequently will be preserved (2). 

Time is of the essence if you want to minimize pruning. Early learning is better than later learning because the younger the child, the more plastic (i.e. moldable) the brain. Dr. Abdeldayem, Professor of Pediatric Neurology, describes brain plasticity as "the capability of the brain to alter its functional organization as a result of experience... plasticity includes the brain's capacity to be shaped or molded by experience, the capacity to learn and remember, and the ability to reorganize and recover after injury." Why can young children easily pick up a second language (and sound like a native speaker in the process)? Because their brain is so plastic. It is easy for a young child to learn. Neuroplasticity has a clear age-dependent determinant (2). This is hardly a disputed fact. Early intervention programs exist precisely because the brain of a young child is so plastic that it can be changed at an early age. Intervening later in life is far more difficult (just ask any therapist!). 

Children naturally learn easily and what's more, they enjoy the process. We can use this to their advantage, helping them learn new things that will literally grow their brain and serve them for the rest of their lives. Of course this is great for any child, but for the child with special needs it is simply amazing. 

I feel like Juliana lost a lot of time in this critical window because of all the health challenges she faced in her first year of life. However I am also confident that we've slowly moved from one side of the spectrum to the other. We still have more time - her brain is still plastic! I've been pulling from various resources and putting together a new list of daily exercises. Fire away, neurons!

(2) Brain Plasticity - fascinating slideshow

Thursday, April 4, 2013

Development at 24 months

Second Birthday: Development Specifics

I am always a little surprised when we go to our well baby visit and the nurse begins asking developmental questions. I am just a little surprised that our file is not somehow flagged for a little sensitivity in such matters, but at the same time I don’t mind at all; I like to hear the questions. This past time I was pleased by all the affirmative answers I was able to give. Is she using more than twenty words? Yes. Can she spoon-feed with minimal spillage? Yes. (We actually *just* began to work on this, and to my surprised she did pretty well from the beginning). Follows two-part instructions? Yep. Names familiar objects in picture books? Incessantly. Uses pronouns? She’s just beginning to use me/my/mine and that’s it so far. Strings two words together? Yes! Runs well, seldom falls? Ha. Shows empathy? Um... not really (a remnant of SPD?). I realize that positive answers to these questions hardly qualify one for Mensa, but it's still exciting when she can mostly keep up with certain expectations.

I've been curious about Juliana's ever-expanding vocabulary and I recently began compiling a list of words that she says. Her comprehensive vocabulary is way, way, way above this and I believe is mostly on par with other children her age. She’s sharp. She gets it. I have to be careful what I say, because she is always paying attention. Her speech is impressive, I think, given the challenges that she faces. Those challenges are namely low muscle tone and a high arched palate that makes many speech sounds difficult. We have just recently visited a craniofacial doctor to evaluate her palate for a potential submucosal cleft and I am happy to report this is not an issue for Juliana. (It is always a relief to have one less issue to deal with.) However she is very constricted and it was advised that we look into a palate expander - something that I have wanted to do, anyway. At this point I am not sure if we will have to wait years for this (the doctor mentioned that it was usually necessary for the patient to have their six year old molars in) or if we can find someone who can do this sooner.

Despite these challenges, she says a good number of words (list below) and I know that there are more words that’s she saying but I’m just not comprehending yet. She also is getting really good at mimicking and attempting to say most any word. Typically the enunciation will be terrible but she will get the right number of syllables when repeating the word back.

Words at 24 months:

All done
Ready, set, go!
Slice and dice (this one is a phrased used in Daddy/Calvin roughhousing)
Stab (another roughhousing phrase)
Thank you
Where are you

Her gross motor skills still lag considerably but she’s making progress on a regular basis. We love watching this! Just two months ago she was barely tolerating weight on her legs. Then quite suddenly, she was willing to stand up if it meant she could look at something interesting. For awhile we would try to help her walk and she would tap her feet on the ground as if she was doing a tap dance. It was the cutest thing and I regret that we never took a video as it was a short-lived stage. She now takes steps and bears weight on each leg as we help her walk. This time I was sure to take a video, because I know that in another month or so we will probably see marked improvement:

Lately I've felt that Juliana experiences a great deal of frustration due to her inability to walk. She knows that she should be upright in order to keep up with other kids and do the things that they are doing, yet she is either stuck on the floor or in my arms, neither of which is enough for her. It's difficult for me too as there are many situations when it's not safe to crawl but it would be safe to walk (rocky or uneven path) or situations where I simply can't bear to watch her crawl for very long (driveway, garage) or situations where it's just a huge mess to allow her to crawl (playground with a mixture of mulch and mud). I do allow and encourage her to crawl as much as possible as it's a really important exercise for both body and brain. But I very much look forward to the day when I can take her outside and watch her toddle around the yard. Calvin experienced a personality change when he began walking (he became much more content) and I expect that the same will be true of Juliana.

Other fun little things she's doing these days: she insists on wiping her face with a napkin after eating, she loves putting dishes in dishwasher, wants to know letter names, loves to be scared by daddy, loves to join in roughhousing. She continues to love books. She loves going to the library. She loves taking walks. Like most toddlers, she wants to be independent but she also simultaneously wants to be glued to mama.

For the time being she still has four therapy sessions a week. I have wanted to cut it down but it simply hasn't been feasible as I am stuck in a catch-22 with Medicaid: any fewer sessions and she loses it. Medicaid pays for 50% of her therapy costs and any medical bills. This will certainly take serious evaluation in the coming months, especially as Calvin begins kindergarten this fall and we become more serious about our homeschooling efforts. I think that both of them deserve some normalcy and balance in their lives, and that's what we'll attempt to find.

Monday, March 11, 2013

Two Years

Juliana turned two last week! 

I like to use these big milestones as a moment of reflection. It’s hard to believe that just two years ago I didn’t know much about NICUs, feeding tubes, medical equipment, developmental delays, or rare genetic conditions.

David was worried about Juliana the night that she was born. I wasn’t. I remember clearly that we were in the postpartum room and we could see the lights of the NICU across the courtyard. “Don’t worry about her, she’s going to be fine.” It was a rare role reversal. I simply wasn’t myself - I was too shocked from such a fast and unexpected birth. I also blame that initial lack of concern on the complete lack of birth bonding. I don’t remember when exactly I was able to hold Juliana, but it wasn’t until her second or third day of life.
A brief trial of room air
For a long time it was difficult to not focus at least somewhat on the disability: she didn’t eat orally, didn’t make eye contact, didn’t smile, was extremely sensitive of sensory experiences, etc. We had to focus on these issues in order to improve them. Now we have finally arrived at the point where we can sit back and watch her develop without worrying. We can enjoy the process.
It’s only recently that I have returned to that place of not worrying. Oh, I have little concerns here and there. I wonder if vision therapy is really going to help. I worry that the craniofacial specialist will see a need for surgery. I’ve been concerned about her hearing. I wonder if we’ll ever be able to travel as a family without having to bring homemade broth with us everywhere we go. I still have not completely solved the puzzle of eczema and it is driving me crazy. But overall, I don’t worry about her. I don’t worry about her development. I don’t worry about her health. It’s not that things are perfect, but they are in a good place.
And another thing that wipes away any less-than-positive thoughts or concerns? I’m crazy about her. It is a pleasure and an honor to be her parent. In the special needs community I sometimes see a back and forth on whether disability is a blessing or a curse. It is what you make of it, I suppose. Sometimes I am not sure if Juliana is really doing so well or if we are really just so blinded to disability. Perhaps a mixture of the two. In any case, it is a wonderful place to be.

I look at my kids - both of them - and I feel like I have won the lottery.

Until they begin to simultaneously complain about one thing or another, but that’s a whole 'nother story...

Sunday, January 27, 2013

Excerpt: Expecting Adam

...I have had to unlearn virtually everything Harvard taught me about what is precious and what is garbage. I have discovered that many off the things I thought were priceless are as cheap as costume jewelry, and much of what I labeled worthless was, all the time, filled with the kind of beauty that directly nourishes my soul.
Now I think that the vast majority of us "normal" people spend our lives trashing our treasures and treasuring our trash. We bustle around trying to create the impression that we are hip, imperturbable, omniscient, in perfect control, when in fact we are awkward and scared and bewildered. The irony is that we do this to be loved, all the time remaining terrified of anyone who seems to be as perfect as we wish to be. We go around like Queen Elizabeth, bless her heart, clutching our dowdy little accessories, avoiding the slightest hint of impropriety, never showing our real feelings or touching anyone else except through glove leather. But we were dazed and confused when the openly depressed, bulimic, adulterous, rejected Princess Di was the one that people really adored.
Living with Adam, loving Adam, has taught me a lot about the truth. He has taught me to look at things in themselves, not at the value a brutal and often senseless world assigns to them. As Adam's mother I have been able to see quite clearly that he is no less beautiful for being called ugly, no less wise for appearing dull, no less precious for being seen as worthless.

-Martha Beck, Expecting Adam 

Saturday, January 19, 2013

Vision Therapy

Yesterday we did something that I have been wanting to do for a long time: we saw a behavoiral optometrist, also known as a vision therapist.

I can't remember when Juliana's eyes first began crossing. We don't remember seeing it when she a newborn, but then again she was very sick and didn't spend a lot of time with her eyes open. By the time she was beginning to make eye contact I was beginning to notice that her eyes looked a bit "off." Here she is when she was 3.5 months old. If you look carefully, you can see that each eye is looking in a slightly different direction:

Several months after this she had her first appointment with an opthamologist. It was a relief to hear that her eyes were healthy. The opthamologist wanted us to begin patching her eyes. We would help strengthen her eyes by patching an alternate eye each day for one or two hours.

Strengthening the eyes is well and good, but I now realize that the root problem is coordination and integration - not strength. We have actually never noticed any problem with Juliana's vision, other than the way that her eyes look. But surely it must affect her vision somehow. Other than patching or perhaps eventual surgery (a bridge that I am not sure I would ever cross), her opthamologist has no suggestions.

I needed to see someone with solutions. The problem with the eyes is really a problem with the brain. We've been re-programming her brain through occupational therapy and physical therapy. Now I needed someone to focus just on the eyes.

And so yesterday afternoon we sat down for a vision assessment. The optometrist spent some time looking at Juliana's eyes from different angles, looking through different blocks of glass, shining lights in her eyes, observing the way that she tracks a moving object. She saw the strabismus of course. I explained that it seemed like it had improved a little bit in the past few months. We used to always see it in photographs - sometimes having to delete many photographs because her crossed eyes were almost painful to look at - and now it is less obvious. Example below. I can still see the strabismus, but it is not glaringly obvious:

Overall the evaluation went very well and the optometrist had a lot of positive things to say. Juliana's eye aren't stuck in the wrong place; they drift in and out of the right places. She's not in glasses. She doesn't appear to have any visual difficulties. She doesn't misjudge distance or depth. Her skills with throwing and catching a ball are simply awesome; she is very accurate. She naturally will cross the midline of her body (read why this is important). She is crawling, which is a hugely integrating activity that is good for the brain and thus good for the eyes (read why). These are all good signs that bode well in her favor. After the assessment, the optometrist agreed with me that her right eye is in a little bit worse condition than her left (I wonder if this could possibly relate to having torticollis towards the right for so long?? I forgot to mention it).

Here's what we'll be working on for the next two months:
-Getting Juliana to look out of the corner of her right eye. Stretch the eye to the side.
-When she is focused on something up close, quickly direct her attention to something far away. This quick transition stretches the eyes.
-The optometrist said to continue with patching for the time being. When we're patching, we should be sure to play actively. Fine motor in particular is good to really encourage hand-eye coordination.
-Continue to work on crossing midline and overall integration.

After this we'll be back in to see the optometrist and see how things have improved. She will continue to give us exercises to work on at home. I'm a little daunted by the idea of getting her to "stretch" her eye on a regular basis, but otherwise I am hopeful that these exercises will not only improve the look of her eyes but will more importantly help improve this function of her brain.

Saturday, January 12, 2013


When Juliana was diagnosed with Kabuki syndrome, it was easy to share the news (thank you, internet). The only people that I told in person were my parents. Everyone else was informed over Facebook or email.

As time went on I found myself faced with a new, unanticipated issue: how would I tell any new friends? When would I tell people? Should I just spurt out the news or should I wait for a quiet moment when it was appropriate to share deep secrets? I felt palpitations just thinking about it.

I remember the first time the opportunity presented itself. We were playing with some other kids who we didn’t know very well. One of the moms asked me, totally casually, if Juliana was crawling yet. Juliana was closing in on her first birthday. Obviously, she should have been crawling. She wasn’t. I simply said no, not yet. Later, I wondered if I had missed an opportunity to get it all out in the open: should I have said that she has developmental delays? Should I have revealed her genetic issue? How in the world was I supposed to do this? I 
distinctly remember that I wanted to pose this question to fellow parents of kids with Kabuki syndrome, but I felt pretty silly about it at the same time.

Some people might just like to lay it all out there. I think my husband is like that. I do remember one specific time where he asked a new friend “Have I told you about Juliana? She has a genetic condition. And look, here’s her feeding tube!” That’s not my style. In her book Bloom, Kelle Hampton writes about how confused she was when it came to sharing her daughter’s diagnosis. Her daughter was just a few weeks old and was on one of her first public outings to Target. During her pregnancy, Kelle had become friendly with a cashier who now rushed up to see the baby. I’m paraphrasing here as I read the story over a month ago, but in her uncertainty of what to say and wondering if people would notice based on the baby’s appearance, Kelle introduced her daughter to the cashier by saying “This is Nella, and she has Down syndrome.” The cashier’s face fell and she took a step back. Kelle decided that this was not the way to share the news.

It’s important to me that Juliana is known as Juliana, a little girl who is similar to lots of other little girls but who also has her own distinct personality (which is tenacious, hilarious, and adorable). I don’t want to identify her by her medical issues. At the same time, I am not trying to keep these issues a secret. See the conundrum? I don’t mind being upfront, but I also don’t want anyone feeling sorry for me or for Juliana. I would really prefer that they get to know her first. If they do, then they won’t pity her.

Over time I have developed my own way. It is fairly simple: I don’t tell anyone who I don’t feel like telling. You might be thinking “well, duh!” but you would be surprised at how some people - complete strangers - try to coax information out of you. Cashiers and receptionists have been the worst offenders.

In Road Map to Holland, Jennifer Graf Groneberg outlines her method of sharing her son’s diagnosis:

And to the question of whom we should tell, we decide this: tell anyone you want, anytime you want, only if you want. It’s nobody’s business, really. I don’t go around telling everyone that I was born with an astigmatism, though I imagine when I’m wearing my glasses people might assume something is wrong with my vision. If they want to know more, they can ask me. And if I want to talk about, I will. If not, I won’t. It’s that simple.
It can feel a little awkward sometimes not to offer an explanation or not to (over)share information. It was especially awkward to me when Juliana was an infant and I couldn't nurse her (or give her a pacifier, or even a bottle) when she cried. Thankfully we are now far past that, but now it is the difference in gross motor skills that is most apparent. A typical child Juliana’s age is walking and we’re still a ways off from that. I have an almost-two year old who just recently learned how to crawl. Maybe I’ll offer an explanation for that. Or maybe I won’t.

For those of you out there who also have a child with different needs, how do you handle sharing this information?

A postscript: Although the initial sharing of diagnosis is an awkward thing that I try to time carefully, this does not mean that I am opposed to talking about Juliana. Likewise I also discuss Calvin's strengths, weaknesses and challenges with friends and family and I see this as no different. Because parenting Calvin is an "ordinary" experience I've never felt driven to write about the process. Obviously I write about this journey with Juliana for the entire world to see and I hope that my posts convey that I am pretty much an open book. I really do not care - at all - who knows about Juliana's diagnosis. At the same time, I don't like it when I feel that I am in the position where I have to offer an explanation... but like it or not, that time eventually comes along every time I make a new acquaintance.

Tuesday, January 1, 2013

2012: Year in Review

Last year around this time I opened up Facebook to see multiple posts about how someone had “such a great year!!” and how things were so wonderful that they couldn’t wait to see what was in store for the next.

I couldn’t relate. I summarized our year:

There really aren't enough words to adequately describe this past year. I began 2011 knowing that there was a small possibility that Juliana was not healthy. We spent most of the year in the dark before finally getting a diagnosis last month. And by "in the dark" I mean that it was truly pitch black, particularly in moments where I could do nothing to ease her pain and when I questioned whether there was any food that was safe for her to eat. It's been the hardest year of my life. But we are forging our own path and by the grace of God we are all still sane and healthy (or getting healthy in Juliana's case). I have been so fortunate to make some new friends who truly understand what we live day in and day out. We're thankful for where we are now but certainly hoping to see Juliana make even greater gains in the coming year.

As 2012 is coming to a close, I am excited. It has been a good year for Juliana. A brief timeline:
  • In January 2012, she began to sit up unassisted.
  • In March, I transitioned her to GAPS intro.
  • Also in March, she began eating all of her food by mouth.
  • In April she was released from the care of the neurologist. I am hopeful and optimistic that we will never have to return. (GAPS is a very effective anti-seizure diet).
  • In May we began seeing our new Occupational Therapist who specializes in sensory work. These sessions have been really pivotal for Juliana and I am so thankful that we made this investment when she was so young. I also switched around every other therapy that we were doing, finally settling on three top-notch therapists (one occupational, one physical, one speech).
  • In June she had her feeding tube removed, exactly one year to the day after it had been placed. I believe that she exceeded all expectations (including my own). We have never been back to see the gastroenterologist.
  • Somewhere along the way, she began to do amazing things like pretend play. She picks up new signs easily (thank you, Signing Time). We see improvement in her sensory processing.
  • In August, she learned how to transition herself from a prone to a sitting position.
  • In October she began a rudimentary commando crawl.
  • In November/December she began to string two words together (“Hi Mama,” “Bye Daddy,” “More swing”).
  • In November we had a follow-up appointment with the geneticist. There wasn’t a whole lot to say, which was fine - no news is good news. I don’t foresee us going back again.
  • In December she began a four-point crawl! She also began climbing steps (with some assistance).

Juliana continues to amaze us on a daily basis. She is observant, she is smart, she is communicative, she is engaged. She has a very good memory. She is quick. I read about (and sometimes see) kids who are slow processors, and this terms just doesn’t fit Juliana. For a long time I’ve said that her gross motor skills were her biggest delay. I believe this still to be true. Her speech is also delayed but lately she has plenty to say; it’s all in there, we just need to work on the articulation. Occasionally we will see a doctor who will ask me how much Juliana understands. Everything, I say. Which is particularly amazing considering that she has a mild hearing loss that we are continually monitoring. Overall, Juliana is very much like any other little girl.

I am hoping and planning big things in 2013. My hopes and dreams are so big that I hesitate to even speak them out loud. They include walking, potty learning and reading. I am also extremely hopeful that she will begin to eat an even more varied diet and that we will all be eating the same things together.

The other major theme of 2013 is something that I have been doggedly pursuing for the past year: balance. We’ve come to a place where our therapy load is manageable but I still do not feel that it is the best arrangement for us. I need more time with both of my kids and they both need more time being “normal.” I feel fairly certain that we will get there sometime in the coming year, but I am not yet sure what it will look like.

Here’s to a healthy and productive year!