Leaps and Bounds

My Bean is growing in every way all of a sudden.  She has moved up a size in clothes, which is super exciting for me because I was getting tired of dressing her in her 12 month stuff.  For those not familiar with the Bean, she’s tiny – 3 3/4 years old and now wearing 18 – 24 month clothes.  What mom doesn’t love new clothes, even if they’re for her child and not for herself?

Walking is the Bean’s favourite hobby.  She toddles around everywhere, dancing if there is music and running (sort of) if she’s super excited.  She sure keeps me hopping when we’re in public – her curiosity knows no bounds, so she’s off the second I put her down. A whole new world has opened up to her and it is so much fun to help her explore and discover new things.

She keeps herself busy while I’m working in the kitchen by removing plastic containers from the cupboard and distributing them around the house.  She loves to “help” me wash dishes, standing on a chair at the second sink with her own bowl of sudsy water.  While it makes a huge puddle on the floor, and she keeps stealing the clean dishes from the rack and putting them back in my dishwater, it can be tremendous fun.  I still eventually get the dishes done.

Laundry is a similarly fascinating chore.  Bean likes to push the buttons on the washer and dryer, so after we load them, she closes the door and gets them started.  She recently started taking clean clothes out of the laundry basket and putting them away in her drawer. As long as I’m one step ahead of her, she manages to put the right things away in the right places and I don’t have to reorganize when she’s done.

The challenge of communicating with the Bean is starting to get a little easier.  She attempts to copy everything we say, and it’s been a blast finally being able to teach her new words and have her respond.  With Christmas coming up in a few days, we were thrilled that she has learned to recognize and sort of say “Santa”.  We’re still working on “Baby Jesus”.  She had a Santa cupcake at her Christmas party, and since she associates cupcakes with birthdays, she wanted to blow out a candle.  I used that opportunity to remind her that it is Baby Jesus’ birthday, and we sang and pretended to blow out a birthday candle.  So cute.  However, the fact is that Santa is a much more compelling symbol for a toddler – bright colours, concrete concepts, and presents…the importance of the birth of Jesus is a little too abstract for her yet.

My favourite part of parenthood these days is playing with the Bean.  She has a great imagination and loves to make jokes and laugh.  Her jokes usually involve some sort of slap-stick comedy, and she giggles uncontrollably at her own antics.  She loves to be tickled and startled, asking for “moh” (more) over and over again.  At the playground, she enjoys climbing the structure and sliding with me down the big-kid slide.  When we get to the bottom, she pretends to be a chicken as she waddles back to the stairs again, flapping her wings and clucking, “buh, buh, buh”.

Preschool continues to be an awesome experience for the Bean.  Her teacher is on maternity leave, but they’ve had a string of wonderful substitutes in the meantime, and the teacher’s assistants are a stable presence for the kids in their teacher’s absence.  Bean is apparently the “angel” of the class – the sweetest and least disruptive.  Of course she is – she’s her mother’s daughter!  But seriously, I feel very fortunate that her diagnosis doesn’t come with an expectation of major behavioral challenges.  She certainly gets frustrated and can be persistent about having things her way, but unlike some of the other kids in her class, she doesn’t tend to lash out physically or flop down on the ground in protest.  At her most aggressive, she’s just really loud and squirmy.  I get more resistance from her at home than they do at school, I think, but that’s pretty normal for most kids.

Mostly, these days, she feels like a delightful 2-year-old.  It seems appropriate to me that her mental age seems to fit her physical age, even if they don’t correspond with her chronological age exactly.  She’s starting to get interested in dolls and playing dress-up.  If they didn’t make her also do other activities, she would be a permanent fixture in the play kitchen at school.  At home she loves to build with and knock down blocks, pull stickers off their sheets and stick them everywhere, have tea parties with Elmo, and get dirty in her sandbox.  When I’m digging around in the garden, she joins me, although a lot of soil still goes in her mouth.

Our biggest challenge with the Bean continues to be her sleep habits.  Currently, she mostly sleeps with us in our bed.  She won’t settle and fall asleep at night time without one of us lying beside her.  If we do put her in her own bed, she wakes up an hour later and we have to do it again.  She still takes naps but if she sleeps for more than an hour in the afternoon, she’s up until 9 or 10 pm, which means that my Sweetie and I don’t get much of an evening together.  We’re working on some strategies to get her sleeping consistently in her own bed.  She is too persistent at this point for the Cry-It-Out method, and frankly, I’m too soft-hearted to be able to stand it.  I think part of it is that she’s just a very physically affectionate child.  She needs the reassurance and comfort of a snuggle – I say there are worse things in this world than that, for sure.

Potty training is in the concept stage right now.  She’s starting to make it known when she needs a diaper change.  We’re working on recognizing when she’s actually going so we can start to preempt it and get her to the toilet.  But she doesn’t like sitting on the potty or on her little toilet seat, so we’re trying to get her used to that first.  As with most things in the Bean’s life, it will take a lot more time than it does for most other kids.  That’s just the way it is for us.  And in the meantime we’re helping to keep Pampers and Tide in business.

I predict that the coming year will be one of even bigger leaps and more impressive bounds.  Our Bean will be turning 4 in March – it’s surreal to think about.  I feel like I’m finally coming into my own as a mother.  The extended infant stage was not my ideal situation…as much as I love babies, having one for 3 years while all the other kids are changing rapidly was a little disheartening and quite difficult for me.  As always, though, when I look for the silver lining it’s there.  Most mothers mourn the speedy passing of the infant stage.  I got to coddle and snuggle and baby my little one a whole lot longer than most moms before she became a wriggly wild thing.  Every milestone reached tastes that much sweeter because of the struggle it took to get there.  I don’t take anything about the Bean for granted.  I marvel at how far she’s come in the last year and I feel grateful for all the help we have along the way.

What a blessed life we live!

Recent Beany Accomplishments

The Bean has been growing in all areas lately.  It’s been so exciting.  Some highlights:

1. Speech– Her words have been exploding.  She tries to copy most sounds we make, and is learning new words and signs every day.  Recent words include “wah” (walk), “hah” (hat), “ooh ooh” (monkey), “baa baa” (sheep), “nana” (banana), ‘ama” (grandma), “puhpuh” (grandpa), “amauw” (animal – not to be confused with ehmauw, which is Elmo), “wawa” (water), “ow” (out), and “dauw” (down).  Some of these words she’s been able to say for a while, but she’s finally using them to communicate her needs.  It’s so much easier.
   

   The Bean LOVES to read (courtesy of Naomi Unrau)

2. Fine Motor– The Bean has gotten very good at manipulating my iPhone.  She can select apps with her pointer finger and touch a tiny arrow to move the story or game forward.  She is starting to be able to feed herself with a spoon.  If I pierce the food with her fork, she can get that in her mouth too.
   

   All dressed up for a tea party (personal photo)

3. Gross Motor– We’ve been walking around together for a couple of months, with me holding her hands and walking behind her.  She’s started to be able to walk on the treadmill at therapy holding onto a bar without being supported or helped by her therapist.  She can also walk pushing her walker ahead of her.  Standing is now her preferred position and she loves to play, read books or watch TV while cruising up and down the side of the coffee table.  In addition, she has started lying down on her stomach and pushing herself around with her hands and knees.  It’s not quite crawling – more like a frog swimming motion – but it gets closer to crawling every time.
   

   Farmer Beany had a cow, EIEIO (personal photo)

4. Social– The Bean loves to play with other kids.  She has always loved being around other people, but it seems like she’s starting to notice the difference between hanging out with adults and playing with kids.  I’ll be sending her to daycare once a week to have more opportunity to play, and also to give myself a break; we have found a local playgroup, so we’ll be playing there after speech class on Tuesdays;  on Wednesdays, we go to a Mommy and Me music class, which we both enjoy immensely; and we still try to get to playgroup with our Southern Marin Mother’s Club playgroup on Fridays.
   

   A little music appreciation with friends (personal photo)

5. School– on March 21, 2012, the Bean will start prescho0l five mornings a week.  We’re hoping to get her into the Special Needs preschool in San Rafael because they have a lot more resources to help her out.  The default preschool option will be an integrated school in Novato that has typical and special needs kids together in the same class.  That wouldn’t be so bad, except that I think she’s still going to need a lot of physical help, and they don’t really have the resources for that.  So I’ll be advocating to get her into the more extensive program, at least for the first year.I am both anticipating and dreading the start of preschool.  On the one hand, I am very much looking forward to having a few hours to myself every day to get things done without interruption.  On the other hand, I’ve spent 2.5 years spending most waking moments with my daughter, and I think I’m going to feel a little weird (and maybe a  bit lost) without her.  Still, for the most part, preschool spells F-R-E-E-D-O-M for me, and I can’t wait for the opportunity to explore some of my own interests again.

Oral-Motor Therapy – In the Beginning

When I was first put in touch with the Golden Gate Regional Center, I expected my daughter would need Physical Therapy, but I had no idea that Oral-Motor Therapy (OMT) even existed.  The coordinator that met with me noticed that the Bean tended to stick her tongue out (called tongue protrusion) and suggested that we get her evaluated by an Oral-Motor therapist.  She said that tongue protrusion can have a negative effect on feeding, development of mouth shape and speech.  Let the education begin!  I felt overwhelmed, all of a sudden, with what I didn’t know about infant development and my daughter’s condition. 

We set up a meeting with the OMT office and a wonderful lady evaluated the Bean’s needs.  When I think back to that time, it amazes me how far we’ve come.   She was 7 months old when we started OMT.  I was having trouble introducing solid foods because everything just ended up coming back out of her mouth.  She wasn’t able to hold her own bottle, and still drank her milk lying back in the crook of my arm.  She was barely 15lbs, was still feeding at night, and her bottles were taking an hour to finish. 

The Bean had a lot of gross motor issues, which translated into problems with feeding.  When she sat up, she would hold her chin up and arch her back too much (extension), which made swallowing more difficult and made it easy for her tongue to protrude.  Her cheeks and lips were also very tight, which made her mouth look small and made it hard for her to babble and form new sounds. 

At 7 months, she wasnt able to sit on her own very well. In this picture you can also see how tight her smile was.

One of the first things we worked on was her body position in her high chair.  We stuffed towels behind and around her body so that she could sit more upright.  We put a rolled up washcloth behind her head so that her chin would tilt downward, and more washcloths beside her head so she wouldn’t tilt her head to the side too much.   All of this served to help teach her body not to arch back, and also helped her tongue to start learning not to stick out all the time.  To get a sense of this, try this exercise: 

1. Stick out your tongue. 
2. Tilt your chin up so that your head tilts back.  Feel the way your tongue actually pushes forward.
3. Now tilt your chin down so it touches your chest.  Your tongue should pull back, and if you try to keep it pushed out, you’ll probably feel a bit of a cramp in your neck. 

We changed the bottles she was using to the kind with a bend in it, so that she could sit upright to drink her milk, thereby training her tongue to suckle the nipple while inside her mouth instead of between her lips.  It also helped a lot with her swallowing and she started to drink her bottles much faster. 

Tri Chew tool

The second thing we started working on at the beginning was teaching the Bean’s tongue to lateralize – to move from side to side.  In order to eat or talk, you need to be able to move your tongue in all directions in your mouth.  The Bean’s tongue only moved forward and back.  To train her tongue to do more moves, we used a tri-chew – a triangular teething tool with different textures on each side and at each point.   She loved chewing on that thing and it really worked!

The third thing we did was facial massage.  Since her cheeks and lips were so tight, I used a pen-like vibrating massager to loosen up those muscles.  I also massaged her soft palette (the top of the inside of her mouth) to make sure that it stayed smooth and rounded instead of getting a high peak in the middle from all the tongue thrusting she was doing.  Before she got teeth, I was also asked to encourage her to bite on my fingers by pushing down on her lower gums and then releasing.

Task number four was teaching her to eat from a spoon.  As it was, every time I brought a spoon to her mouth, I would scrape the food off the spoon using her top lip, and then she would promptly stick out her tongue and all the food would run down her chin.  We used a technique called parallel feeding to teach the Bean to use her lips to clear the spoon, and also to swallow with her tongue inside her mouth and with her mouth closed.  Stop again for a second and try this:

1. Stick out your tongue
2. Part your lips a little bit
3. Try to swallow – it should be impossible
4. Now close your lips around your tongue and try to swallow again – easier, right, but still not comfortable?
5. Now pull your tongue back into your mouth and swallow again – ahh, now that’s what swallowing is supposed to feel like. 

Parallel feeding is a skill that takes some time to master.  It is also tough to explain in writing.  Basically, you feed from one side of the spoon, then flip the spoon around so they get the food on the other side of the spoon, and then flip it around a third time.  The idea is to switch sides quickly enough that the child learns to swallow the first bite before she can stick her tongue out again, in order to get the second bite when it comes.   I really wanted to include a video to illustrate my point, but my account doesn’t include video, so maybe I’ll add it at a later date.  In the meantime, if you are my friend on Facebook, you can see the video here. 

I have to tell you that all of these changes were a lot to incorporate into our lives.   I did my best to keep up, but feeding was hard enough without adding all the awkwardness of the different techniques, body positioning, chewing homework and massage.  I understood that in the long run, all the work would make everything easier, but I emotionally resisted the Oral Motor therapy right from the beginning.  I didn’t WANT everything to be this hard.  It seemed like I needed at least three hands to do what I was being asked to do on my own at home.  Feeding took up a large portion of our day, and it was embarrassing to have so much fuss around feeding when we were out in public.  At that time, I think I was still in denial that the Bean really had a serious problem.  Now, looking back on the pictures and videos, I can very easily see how different she was from other babies her age.  I just didn’t want it to be true. 

There is more to the OMT journey that I’ll go into in upcoming posts, but first, I’ll give you a sneak peek into the future.  Things got a lot better.  I got really good at parallel feeding, and so did the Bean.  We don’t have to do the parallel feeding anymore because she can clear a spoon with her top lip and swallows with her mouth closed and her tongue safely tucked inside.  The Bean’s tongue is rarely outside her mouth anymore, unless she’s doing her Tazmanian Devil impression.  It moves from side to side and up and down just fine now, and she pushes food onto her molars with that tongue, no problem.  Her facial muscles have also relaxed.  She has a huge, wide smile that shows up often on her face.  But the Oral Motor Therapy homework is still my least favourite.