Friday, November 2, 2012

Our Story: 18 months after a baby stroke

The Scary News

The ENT (Ear-nose-throat doctor) wants to do a Modified Barium Swallow study.  He wants to rule out aspiration (food going down to the lungs).  I thought Baba would be showing signs that he was aspirating (ie. coughing, wet sounding gurgle, aspiration pneumonia, etc.), but the ENT says that he could be aspirating silently.  It's so crazy.  I was worried that he wasn't eating enough, but now I'm worried about feeding him.

Somewhere in the back of my mind, I was worried about his swallowing.  I mentioned it to everyone I met.  I finally met a specialist who gave credence to my fear.  I guess it's a good thing.  Yet it scares me.  What if his lungs are already damaged?  Will they heal?

After the swallowing test, he wants to put him under anesthesia and check his hearing.  He kept saying, "on the operating table".  All I could see was flashbacks of my son in the NICU with wires coming out of every limb.  I started having a panic attack.  As if my head was bobbing in and out of water, I kept struggling to breath, hear, and speak. 

I had so many questions.  Do we have to test the hearing now?  Couldn't we wait till he could tolerate the test without needing to put him under?  What are the risks for this procedure?  Are there alternatives?

I didn't ask any questions.  I stood, dumbly staring into space, trying not to have a complete breakdown. I kept seeing my son "on the operating table" with wires coming off of his head, his nose, and his mouth.  His tiny body surrounded by big people hiding their humanity in white gowns, latex gloves, and masks.  Do we really have to do this?  Will I see my son again?

A part of me realizes the chances of something going really wrong is a tiny percentage.  Yet, I can't help wondering if it will.  A baby has a 1 in 2000 or 0.05% chance of suffering a stroke at birth.  I believe the chances of something going really wrong on the operating table are higher.  I don't like percentages.  I was never a gambler.

Yet I know that knowing what hearing problems my son is having will have a significant impact on his speech and language, his emotional development, and his social skills.  Starting treatment early will definitely impact positively on his life.  It will definitely help him get the help he needs.  Yet a part of me wishes I could delay the testing.  I wish I could prevent another stay in the hospital.

The Good News

On the other hand, Baba is talking more.  He is more willing to say new words and he's started to sing the alphabet to the letter "g".  He will still need help with articulation and consistency, but he has made dramatic improvement in the last 3 months.  I am really pleased with his progress and I believe he is too!  He seems so proud of himself!

His physical development is still his strong point.  He is now able to climb up the stairs holding on to the railing, he can run, he can step over small items, and he is generally more coordinated than before.  He seems more aware of his body and is able to plan movement.

He is able to complete single piece puzzles, stack three large blocks, and flip through a board book one page at a time.  He can paint using a  modified tripod grasp and he is able to pick up small objects using a neat pincer grasp.

Cognitively, Baba is showing increased ability to problem solve, imitate behavior, and try novel activities.  He also displays decreased separation anxiety and is able to play on his own for 20-45 minute blocks.

The Terrible News

Baba has officially started the "terrible twos" early.  He has two crazy tantrums on his belt and he is ready for more!  He is definitely frustrated by the crazy things he wants to moving the bookshelf...filled with books, working on mom's computer, spreading the peanut butter, and so many other things.  He also decided that diapers are a hassle and prefers nudity.   

He quite literally seems like a different kid!  I miss the other more cooperative kid.  Can I say that?  Oh well!!  I just felt emotionally drained after he tried to run away with poop smeared all over his butt, which led to a very loud and emotional protest.  Ugh!

The Better News

He seemed to sense that I was exasperated after the tantrum.  He walked cautiously and finally asked to nurse.  Then he took my hand and put it on his head, asking me to stroke his hair, which he usually hates.  He was "letting me" stroke his hair as an exchange, which amazingly did make me feel better! 

Though the future scares me.  I see that we are growing together and learning how to deal with his new overflowing emotions.  I'm sure that I'll learn to see the signs and I'll be able to deal with this new phase in time. 

On the other hand, his personality is really shining through and he is cuter than ever!  He is really connecting and sharing his world with me.  It's really adorable!

Saturday, October 20, 2012

Everyday Therapy: Movement therapy inside the home

Sleeping baby

When we lived in San Francisco Bay Area, the weather was almost always good enough to go outside every single day.  Winter weather was really somebody else's Fall weather.  So it was never a problem finding a playground to get our sensory integration treatment...especially the swing.

New England weather is not going to be the same.  Extreme weather conditions may become our reality.  So I've been creating a veritable OT Gym inside our apartment.  My first priority was to install a swing, without creating gaping holes, yet safe for my little guy.

Ikea has been my favorite furniture store since they invaded the States with their amazing build your own furniture system.  They also have a great children's section, including this swing.  It no longer seems to be on their online catalog, but they had it in the store.  I grabbed one before I even knew if I could install it.

Baba was afraid of it at first.  However, he's intense curiosity overcame his fear and eventually asked to swing by standing in front of it and looking at me.  He promptly fell asleep.  He has been taking a nap in this swing ever since.  He also falls asleep in it, before being put to bed.

It's definitely not Sensory Integration Therapy, but it's certainly relaxing and comforting.  He has figured out when he needs to sleep and will now ask to swing when he wants to sleep.  Amazing!  It's been really wonderful to see that he is learning to read his own body and taking action to fill his own needs.

Ikea swing with platform swing
I didn't know that the air bag was sold separately, so I had to improvise using a small platform swing I bought on Amazon.  Eventually, I will buy the air bag and use the platform swing separately.  But for son thinks it's his sleeping tent.  I'm okay with that.

Since Baba is so small and this was not a clinic, I chose to use the Ikea attachments to install the swing, using very heavy duty screws.  It turned out, that our ceiling is held up with steel beams.  So I feel extremely safe with this arrangement.

If you plan to put up a swing, make sure to get a very knowledgeable person to help out.  It's important that they take into account the amount of pressure exerted on the screws as the swing moves.  In a clinic setting, we usually account for 1000 pounds of pressure.  It's strong enough for an adult to use the swing safely.  Our swing would probably take 300 pounds of pressure, safe for up to a 50 pound child.  Since Baba is 28 pounds, this is good enough for now. 

If your child will be using the swing, independently, more safety measures may be necessary.  I bought attachments from Southpaw Enterprises, so I can take the swing down easily.  If you have plenty of room for putting up a swing and leaving it there, you won't need anything fancy. 

I'll be posting more information on using the swing as therapy soon, but I thought I'd put this idea out there.  Apartment Therapy has a great "do it yourself" post on putting up a simple swing here.  Design Mom's "Living with Kids" series showed one home with three swings in the playroom here.

So if you have an area with 6 feet radius of free space, consider putting in a swing for the long winter months.  It might just make you a parental star in the eyes of your child!

Monday, October 15, 2012

Everyday Therapy: Gross motor and sensory fun outside

Going outside with your child is probably the easiest "everyday therapy".  There are many opportunities for practicing skills.

Baba has some mild sensory issues that affect his ability to eat, to tolerate sounds, and try new things.  However, when he's outside he shows a remarkable ability to tolerate sensory input.  It also motivates him to try new things and practice his gross motor skills.

getting muddy
Normally he wouldn't touch anything wet or muddy, but he was inspired to walk through mud on this day!  He got the mud all over his feet.  Of course, he was unhappy afterwards and I had to wipe them.  Several weeks later, he walked in on his bare feet and didn't mind that his feet were covered with mud!

This is typical of children with sensory issues.  They are more willing to try new sensory experiences, when they can do so on their own terms, when their neurological and mental systems are prepared.  They also have days when their systems can tolerate more sensory input and days when they can't tolerate much at all.  Their body is affected by sleep, diet, stress, developmental stages, etc.  This is true of adults, but we have more coping skills to help us when we wake up on the wrong side of the bed.  Children are in various stages of learning these coping strategies.

walking on grass
It took Joshua a long time to start walking on grass.  He really didn't like how it felt.  We started with completely covered shoes, then the fisherman sandals above, and now he can walk on grass barefoot!  He had trouble with both the uneven ground and the feel of the grass.  He still has days when he can't tolerate it, but he no longer goes out of his way to avoid it.

beginning to run
Being outside, helped Baba learn to run.  I would write the numbers in chalk and he would walk from number to number, until he slowly began to run.  In this picture, he is still mainly walking fast.

vestibular/movement therapy
Baba hated the swing when he was younger, but watching other babies increased his curiosity, until he agreed to get on himself.  Now he loves the swing.  We recently installed one at home, so we wouldn't miss this important treatment during bad weather days.  Vestibular/movement treatment is one of the "big guns" for sensory integration treatment.

trying different things
Baba is very cautious and reticent of trying new things, especially if they involve possibly falling.  Yet when he's outside, he regularly tries new things.  In this picture, he decided to take the ball to the grass area, which required climbing over the barrier.  It's beautiful to see your child try things they might not try at home, when they feel inspired.

climbing a hill
There is a much larger variety of surfaces and inclines outside, giving your child more ways to practice or learn to challenge their balance.  In this picture, Baba practices going up and down a steeper incline, on a slightly slippery surface.

Even if your child is not really walking, they can still benefit from being outside.  If they're crawling, let them crawl on different surfaces.  It's a great sensory experience.  If they are using wheelchairs, walkers, or any other device, the different surfaces outside give them opportunity to challenge their skills.  Even if your child is not moving much, let them lay on a blanket and take in the sights.  They might just love it!

Why not enjoy the outdoors, while you still can?

Saturday, October 13, 2012

A quick apology

I'm not sure what's happening, but for some reason blogger is publishing posts without my assistance.  Please forgive the intrusion into your emails.

I am writing a post and I'm not sure if somehow it's mistaking my saving the post, as publishing it.  I'm not sure how an old post got re-published, as I haven't even looked at that one in a long time.

Please accept my apologies.

Monday, October 1, 2012

Therapy Secrets: How to incorporate therapy into your everyday

Chasing Mama=gross motor

Incorporating therapy into your daily life was not easy, especially in the beginning.  Like all change, there's a steep learning curve.  Yet it is definitely worth investing time to make therapy a part of your everyday life.  When therapy becomes a seamless part of your day, it just becomes a different way of doing things.  It slowly becomes a new habit and habits are easier to maintain.  Once therapy is regular way of doing things, it can also make things easier overall.  It's also important to remember that we're in this for the long haul, so balance is key. 

Since I used to preach this with fervor, I was quite surprised at how hard it was to put this ideal into practice as a special needs mom.  But I can honestly say that it is worth the effort, which is why I decided to share my personal experience.  I hope that my "techniques" may prove useful to other special needs moms.

I am going to start another series called "Everyday Therapy".  These will be short little ditties with ideas and examples of how I incorporate therapy into my day.  Hopefully, these will be shorter, thus easier to write and I will be able to share information more frequently.  Well, that's my hope anyway.

On this post, I will share 10 general tips, which will soon be followed by posts of actual examples. 

Overcoming obstacles=gross motor
  1. Write down or think about your child's current goals.  Is it independent dressing?  Is it handwriting?
  2. Think about how you can help your child achieve their goals.  Brainstorm with your OT about activities   that would improve strength, coordination, endurance, motor planning, etc.  Ex.  Let's use independent dressing as an example throughout this post.  Activities that improve your child's body awareness, motor planning, sequencing, spatial awareness, and coordination will also improve their ability to dress themselves. 

    Body awareness can be improved by a variety of activities.  Perhaps your child could push the shopping cart?  Maybe they can help organize the books and carry them to the new location.  Maybe they can jump on a trampoline?  Perhaps hiking up a mountain would catch their interest?  Maybe they would like to decorate a life-sized outline of themselves?  Perhaps they can use a rough loofah to wash their body parts in the bath, while naming each body part.  Virtually any activity that increases sensory information to their bodies and helps them feel their body will help improve body awareness. 
  3. When possible go outside.  Something about being outside gets everyone moving.  There are things to see and things to explore.  It naturally gets us moving and it is the best and easiest form of therapy.   
  5. When possible, let your child do things as independently as possible. 

    For some, this may be pushing their arms through the  shirt, pulling their shirt down in the front, wriggling their leg through the pant hole, and pulling up the sock the rest of the way.  It may take 15-30 minutes to dress, instead of 5, but you can consider it a chunk of therapy time.
  7. Start slow.  Work with your therapist to figure out which area would be most fruitful to start: dressing, exercise, play, standing, or therapeutic techniques.  Start with one area, practice until it feels like a habit ( usually 25 days), then add another.  Over time you'll start to think like a therapist and it'll feel more natural.
  9. It's okay of you need to take a break now and then.  If your child has special needs, this is a long term investment.  It won't hurt to take a short vacation.  Besides, your child needs you to stay healthy and happy.  Taking care of yourself is part of the package.  Yeah, it's hard not to feel guilty, but you really need the occasional break.  You deserve it!
  11. If you start to feel burned out, change activities or focus on a different aspect of therapy.  I'm currently taking a break from the Masgutova Method, but focusing on feeding and language.  I just needed a break after 16 months! 
  13. Everything therapeutic should feel like play!  Play is the medium by which children learn.  So tap into your inner child, what gets you excited?  What makes you giggle uncontrollably?  If you're not at least smiling, than you're probably not having fun.  If you're not having fun, you're probably not playing. 
    Try to find common interests with your child and play together.  This will take some of the stress off your shoulders and you'll both have fun. 

  14. Share the joy with others.  Don't be the only one responsible for therapy with your child.  Get the rest of the family involved, this includes any interested extended family and friends who are interested!  Therapy may help the other family members bond with your child.  They may feel like they don't know what to do with your angel.  Show them.  Inclusion starts at home. 
  15. Re-evaluate how things are going at least once a month and make adjustments as needed.  Write down what progress you see your child making.  Discuss it with your family, friends, therapists, and doctors.  Celebrate the successes, no matter how tiny.  It will help you stay sane and happy for the road ahead.
Swing time=vestibular therapy

Honestly, it's not easy.  Sometimes, I wonder how long I can keep this up.  Yet I keep focused on the big picture.  Helping my son become independent will make him happy, but it will also make things easier down the line.  It's hard to focus on the big picture when exhaustion begs us to stop, but it's the big picture that motivates us to keep going.  Right?  All we want is our children to be happy, functioning at their potential, and included in the community that surrounds us.  The effort we put in now, will make that dream a reality in the future. 

Friday, September 14, 2012

More than words...

 He can't say much, not with words, but he says a lot without words.  His face is constantly moving into different expressions, sometimes so quickly, it's easy to miss.  He has very strong opinions and he wants to be heard.  He wants to have a say in everything we do, because he likes feeling heard.  I know, because he tells me.  If he's trying to tell me something and I finally figure out what he wants, he claps for let me know that I got tell me he's happy that I took the time to understand.  He's happy to be heard.

Sometimes he asks me to repeat something...over and over.  He seems to hear, but has a hard time processing what he hears.  He gets a puzzled look on his face.  It's more apparent when he can't understand a word he already knows.

Where's T?
I started teaching him sign, but he has some motor apraxia (when there's a problem between wanting to move a certain way and actually being able to execute it, even though able to do it physically).  I tried moving his hands for him, but he refuses.  It embarrasses him that he can't follow my movements. He has a sensitive nature and is hard on himself. 

He finally learned how to sign "more".  It still tickles him that he can use this sign to ask for more swing, more swing, and more swing!  Sometimes, he signs for more funny faces, hugs, and kisses.

More swing!

But the happiness of communicating with sign didn't overcome, the frustration of learning it.'s on the back burner until he's motor planning (ability to execute a desired motor action) improves.

Now I'm exploring the use of an iPad as an augmentative device.  I bought the app, "My first AAC".  I'll let you know how I like it.
Put down the camera, mom!
Some may wonder why I seem to be in a hurry to find a communication avenue, but I'm following my own advice about treating according to your child's temperament.  My son is very interested in communicating his wants and needs.  He is also very frustrated by not being able to use words.  Especially because he already knows so many of them. 

There is a large discrepancy between what he knows and what he's able to convey.  He knows all the upper case letters, some of the lower case letters, the basic shapes, numbers 0-22, he can independently maneuver to his apps on the iPad, the basic colors, how to open doors using auto keys and handicapped buttons, and...and...probably things I don't know about yet.

Creating a future, one block at a time.

I'm constantly surprised by his abilities and knowledge.  It makes me happy and indescribably sad.  Happy that he is so motivated to learn, but sad that this large dead area in his brain is making it hard for him.  That large dead area that will continue to get in the way...every time his brain requests for something that is now dead.  After many attempts to communicate with this dead area or try to get through this dead area, the brain finally realizes it must build new roads and create new ways of making up for what is lost. 

There is a constant fear...the brain will get super efficient and only build roads deemed absolutely necessary for survival.  Survival doesn't really include talking, jumping, coordinated sports, or many other desired things.  You see...the brain is a super efficient little knows how to survive. 

The face of joy.
My goal is to convince Baba's brain that talking, jumping, reading, drawing, socializing, and living a full essential to survival.  I want him to be able to do more than physically survive.  I want him to be happy...whatever that means to his little heart. 

It's every parents dream to ensure happiness for their children, but brain injury certainly make this goal more complicated.  Did you know that there's a 50/50 chance that a child who suffers a stroke will grow up without any symptoms?  Well we're in the half that has to work harder.

Sometimes that's so hard.  Sometimes it seems too hard.  Sometimes I wonder if I can do it.  Therapy for years to come.  How does anyone survive it?

Then in a quiet moment of contentment, my son cradles my face with his tiny hands, looks deeply into my eyes, and gently kisses me.  It's more than words could ever say.

More than words

Monday, August 20, 2012

Therapy Secrets: How temperament affects therapy-Part 2

Eating things that stick to the spoon

 How does temperament affect reaching milestones? 

Most babies learn to roll when they are trying to reach for their favored toy.  However, there are different ways to accomplish this desire. 

Laid back baby
The laid back baby will see the toy, try to reach it, decide it's too hard, see a closer toy, pick that up instead, and is very happy to play with this toy instead.  Both toys are cool! 

In general, a super laid back, typical developing baby may reach their milestones a little later than their same age peers because their enjoying themselves and aren't really in a hurry to "grow up".  Many people tend to describe these babies as "good" babies because they are easily comforted, aren't very particular about what they want, and just seem to roll with the punches. 

Physical baby
The physical baby will see his desired toy, try to reach it, try to scoot, try to pull his body with his arm, try to reach it with his leg, try to reach it with both his leg and arm, starts to play by rocking back and forth, and suddenly finds himself on his stomach.  This is so much fun!  He rocks again and rolls to his back.  Surprised, but delighted, he keeps practicing this knew skill until he's tired!  What toy?  Rolling was so much fun!

A baby who is super physically oriented, may reach all their gross motor milestones sooner than their same age peers, but may be a little later reaching their fine motor milestones.  They love to move and they may focus most of their energy on becoming mobile.

The verbal baby
The verbal baby will see the toy, try to reach it, make a cooing sound, try to reach it, make a frustrated sound, try to reach it, keep making frustrated sounds or cry until mom figures out what she wants and brings the toy to her.  Then she cries in delight...making sounds worked!

A very verbal baby may be a little later in reaching their gross motor milestones, but may begin to "communicate" sooner than their same age peers. 

The thinking baby
The thinking baby sees the toy, tries to reach for it, tries to reach with the other hand, takes time to think, tries to reach with his legs, takes time to think, he lunges with his whole body and rocks towards the toy without enough strength, then he leers at the toy.  Finally, he scoots closer using his legs against the floor.  He still can't reach the toy!  In his frustration, he flails his limbs and somehow ends up on his stomach.  It takes a moment to orient to his knew position.  He's not sure what happened, but he sees the toy, reaches for it and grabs it with delight!

A thinking baby may develop their cognitive skills a little faster than their peers, but may have more difficulty developing their physical milestones at the same pace as their cognition.  This often leads to a very frustrated baby who may be more fussy in the beginning.

Every baby can display some aspect of all these behaviors, but most will show a tendency towards certain behaviors over others.  Just like the adults they become, children are all different and their corresponding areas of interests are also different. 

Using laughter to encourage

What temperament is my baby?

I have used the Myers Briggs method of assessing personality for over 10 years.  I was originally introduced to it when I read "Do What You Are" by Paul D. Tieger and Barbara Barron-Tieger, a book about finding your perfect career or job based on your personality.  It shows you how to assess your own temperament and match it to a career or job situation.  Then I found the book, "Please Understand Me II" by David Keirsey.  It's a much more detailed book about the same personality descriptions. 

The above baby descriptions are somewhat based on these personality descriptions, only simplified for clarity.  "Please Understand Me" has a great section describing what these temperaments look like in children, but I also bought "Nurture by Nature", written by Barbara Barron-Tieger. 

It would take too long to go into detail on this post.  If there is interest, I may write a separate post.  In summary, there are four basic types of personalities: Guardians, Artisans, Idealists, and Rationals.  Then there are four subtypes in each main group, which makes 16 different personalities.  It sounds too simple, but there many things to consider and in the end everyone is a unique individual.  However, these descriptions can help us understand some general tendencies, especially if they are very different from our own. 

I really use these descriptions more as a guide, not as a definite description of a person or child.  It's only there to help me understand, not to replace my observations of the real person.  For everyone is affected by their life experiences and choices, making us all very unique.  However, as the examples of the different baby temperament shows, this general guide can help you understand your child and help you find the key to their inner motivations.

My son is definitely a Rational (see thinking baby description).  It's not always easy to figure out a baby's personality, but he is an extremely opinionated little guy, making his preferences and personality quite clear.  I am also pretty sure that he is an INTJ: introverted, intuitive, thinker, and judger (the words have different meanings than popular definitions). 

In general, INTJ's are super independent, innovative little thinkers, who tend to be socially awkward.  They are super competitive with themselves and refuse to accept anything less than their own expectations of themselves.  They are the quintessential nerds, who tend to be lovers of technology all their lives.  They are super intuitive and are great people readers. 

So I try to take his temperament into consideration, when I set up his environment.  If you look at my previous post on setting up the environment, you can see that there are places for independent play, technology toys, blocks, and a private zone.  Rationals seek autonomy all their lives and they have a great need to experiment and achieve their visions.  So I give him plenty of freedom to try things at his own pace and I try to give him space even when I'm right next to him.  He's very sensitive to "failure", so I make sure to set things up for success whenever possible and try to show him through example that it's okay when things don't turn out the way we planned. 

Why is this important?  When we work with a child's temperament, they feel honored and accepted for who they are inside.  This increases their confidence and their willingness to be courageous and try new things.  This translates well into therapeutic goals because we frequently ask the child to try things differently.  If they feel confident to try things without falling apart, they are going to be more willing, not only to try it but keep practicing until they succeed.  As their experience of success increases, they're willingness to practice outside of therapy increases.  Then this leads to a child to practice skills in a variety of settings and situations, making reaching milestones a smoother process.

Learning to balance, while discovering the new

How does this fit into therapeutic goals?

Though we make very specific goals to measure progress, progress is really an organic process, especially in children whose condition affects their function overall.  In my experience, when I'm finally able to motivate my client intrinsically, they seem to suddenly make progress in many areas.  It seems like something finally clicks and they are excited to reach goals and try new things.  This process can be quick for some and longer in others, especially if they are not using words to communicate.

The light-bulb moment is amazing to see.  Some of these moments happened right in front of me and they stay with me forever. 

One moment that comes to mind happened with an 11 year old boy, diagnosed on the Autism Spectrum.  He was considered non-verbal and also suffered from severe sensory issues that prevented him from participating in social gatherings.  After 6 months of therapy twice a week, he seemed more relaxed and even began to smile and giggle in response to appropriate stimulus.  One day, I was playing around with paint in a silly way, just to make him laugh.  He kept giggling and watching my "amazing" painting skills.  When I finally stopped, he slowly looked up at me with a huge smile and a look of happiness and said, "funny!". I was floored!  Not only did he say something appropriate, he was describing my a qualitative action!  It was the day that changed everything.  He began trying to communicate more, he had fun at parties, he began to cuddle with his family, and he made amazing strides in his academic skills.

This young guy was a cautious, quite, thinker.  He preferred and needed to observe first, before he could trust.  He didn't like being rushed and he learned best on visual mode.  He really liked art and being silly tickled his sense of humor.  I used this knowledge to set up the treatment sessions progressively.  It started with the swing and providing plenty of vestibular (movement) therapy.  It was a slow progression, but it was worth every moment. 

Taking temperament into consideration when setting goals and setting up treatment can lead to success.  This process tailors treatment to an individual and creates the opportunity to motivate the person from within themselves.  This can really affect their ability to generalize their skills from one setting to another and can also lead to progress in many areas.

How do I take temperament into consideration?

Many parents automatically start learning the preferences of their children and may begin to take a child's preferences into consideration before making decisions on everyday activities.  For example, you might realize your baby loves being around a lot of people, so you sign up for a mommy/baby class.  Or your child may prefer quieter occasions, so you make a play date with a mom and another gentle baby.  Your child may prefer being outside, so you go walking everyday.  We are naturally affected by our baby's temperament and we adjust our lives to make things smoother. 

Well, this consideration can be taken to the next level.  You can begin to actively use the knowledge about their temperament to encourage progress towards their goals.  Notice I emphasize "their goals".   As you're observing your child, try to figure out what they are trying to do.  Are they trying to roll?  Are they trying to put the peg in the hole?  Are they trying to talk?  Then figure out how you can help them succeed by making the task just hard enough to be interesting and easy enough to accomplish.  If you need some ideas, this is a great question for your OT. 

Then set up the activity and wait.  Let your child take the lead.  This will make them feel more independent and it will give them time to figure out the task on their own, a very good cognitive exercise. Don't worry if they don't do the activity "the right way".  If your child asks for help, show them how to do it, but let them finish the last step.  This will make them feel accomplished, despite needing help.  Plus they will begin to learn the activity.  If they end up needing a lot of help, it may mean the task was still too hard, so next time set it up with fewer steps.

Remember to consider your child's strengths.  If they are good at sitting, but have difficulty standing, set up a sitting task that is challenging.  If they want to stand, make the task easy, so they're mainly working on standing.  Make sure to give positive reinforcement on the actual goal.  (You can do that standing!  Amazing!).

What if my child doesn't use words to communicate?

Observation is important with all children, but is especially useful, when your child is not using words to communicate.  When your child isn't using words to communicate, observing their behavior can tell you a lot about what's going on inside.  Try to take time to observe without speaking.  Communicate on their terms.  If they're using gestures, use gestures.  If they use eye contact, use eye contact.  If they aren't really communicating, use silence with action. 

It's important to balance their communication style, with our talking.  Yes.  It's important that they learn language, but it's also important that they feel understood.  When a child feels understood, it opens the door to try and communicate with us, using "our language". 

When I first immigrated to the US, I didn't speak English.  Not only did I not understand English, I didn't understand the accompanying gestures or cultural nuances of people's actions.  The more they talked, the more everything sounded like gibberish.  I usually felt confused and ended up with a headache.  But as soon, as people stopped talking to me, I was able to focus, observe, and understand.

So, it's important to give someone plenty of speaking breaks, so that they can observe and learn while you're spending time together.  Learn to speak less and do more.  Give them time to process what you're trying to communicate.

A place of his own

What does this look like everyday?

As a parent of a special needs child, I can honestly say that it's hard to be "on" all the time.  In fact, it's impossible.  I'm a therapist, but being a mom is my primary role with my child.  That means I have to fit therapy in little 15 minute spurts throughout the day.  I try to think of what I can fit into our day, then decide what goal I'm working on that day.  At most I have, one structured activity per day.  Then I try to fit in as much "physical" activity as I can.  Then I do one session of the Masgutova Method per day.  I also try to give Baba the opportunity to do things on his own when possible, as therapy.  Honestly, some days one therapeutic thing may be the only thing I can do that day.  I try not to go longer than three days of zero therapy, though that's not always possible.   But this is really okay.  I know that we're looking at the long term, not just the short term goals.  We are creating our own pathway.  One that works for us, and so far it's been successful. 

Every family must find their own rhythm.  It's best if the whole family can be involved, sharing the load is so much better.  Even if the person can only be a supportive helper, it can really help the main caregiver.  It's also okay to take short to two weeks.  Everyone needs to be refreshed and have time to just be a family doing "family" things.  Though if you're feeling loaded down, it's also a good opportunity to see if things can be re-arranged or re-organized.  Most of the therapy should be fun, not difficult work.  Be sure to enlist the help of your OT and request for ideas on how to make things easier and what to focus on.

Most importantly, remember that having loving family support is the most important thing for your child.  They are children first.  Their diagnosis does not define who they are.  It just something they deal with, just like everyone deals with some sort of difficulty. 

Easy next to hard activities


The act of trying to figure out your child's temperament will have another important effect.  It will help you to see your child first, his diagnosis will fade into the background.  It will also help you help support your child, they way they would like to be supported.  In this arena of special needs, it's often easy to forget our children are unique individuals that have preferences that may not fit into nice little "diagnosis" molds.  Their temperament has a huge effect on how they will navigate their lives.  Their temperament may hold the key to what will motivate them to push through whatever obstacles lie in their path.  Setting fire to this intrinsic motivation will also reduce the pressure on the main caregiver to provide extrinsic motivation, since the child will be motivated to try things on their own.  In the end, this motivation will help them create a path to their maximum potential...whatever that may look like. 

Wednesday, August 15, 2012

Therapy Secrets: How temperament affects therapy-Part 1

Therapy on new ground

My son's temperament

He is not a giggly, cuddly, extroverted "Gerber" baby.  He is a serious, intellectual, and very observant little man.  He is more interested in achievement and autonomy, than playing and relaxing.  He can spend an hour trying to figure out how something works and gets really disappointed when he can't figure it out.  Unlike some children, he is hard to distract from his current activity, unless you pull out the iPad. 

He is constantly seeking intellectual stimulation and will start sighing really loudly when he's bored.  Most of the time, his play time looks more like work time.  He can't wait to be old enough to do everything mommy can do.  When we go to the playground, he watches the older kids and gets overwhelmed by all the things he wishes he could do too.  He doesn't know that he's a baby and compares himself to the big kids.  It's obviously disappointing.  He uses his O-ball to test new surfaces before walking on it and also uses it to console himself when he's disappointed with himself. 

When he is finally able to achieve something, he squeals with delight and struts around like he won a gold medal.  He is internally motivated.  He is not as affected by praise, though he appreciates my encouragement.  He gets very upset when I miss his cues or if I'm distracted by some activity when he wants my attention.  On the other hand, he gets over being upset quickly and seems quite satisfied with my apologies.  He is very intuitive and frequently responds appropriately when I explain things.

Sometimes it's really hard to figure out how to set up an activity so that it is challenging, but not overwhelming.  He has a small threshold of things that excite him or bore him or overwhelm him.  He likes some regularity in his schedule, but needs some flexibility for possible intellectual pursuits or other exciting activities.  He hates the mundane and loves new experiences.

Learning how things work

How does temperament affect behavior?

Have you really thought about your child's temperament?  Temperament can play a huge part in your child's development.  Your child's temperament can affect when they reach their milestones, how they overcome obstacles, and how they interact with the world.  It can affect therapy by how you set up the environment, how you set up therapeutic activities, what activities you choose, how you present them, etc.

My little guy has sensory issues that can overwhelm him in crowds, but his intense desire to experience new things can help him overcome his inclination to run from crowds.  For example, he will often refuse to go to a small crowded familiar playground, but he is willing to go into crowds if it is a new place.  His curiosity helps him tolerate the discomfort of being in a crowd.  However, on a bad sensory day, this method may fail because he's not feeling well enough to override the discomfort.

If your child likes people, they may tolerate crowds better than a child who prefers intimate settings.  I know that my little guy may tolerate doing easy tasks in a crowded place, but he will most likely refuse to do anything that he has not yet learned how to do.  Unless the activity has sparked his curiosity or his intense desire to accomplish a task.  I know not to push him because it will only push him away.  However, if I expose him to the task and wait, his own curiosity will force him to try the activity.

I also know that he prefers new experiences more than socializing with people.  He's young and true cooperative play doesn't start until much later, but some baby's are interested in other people.  My baby is more interested in things.  He is quite wary of strangers, except other babies and some children.  He is very social with me and with his aunt (Most likely because she lives with us).  Eventually, he will socialize more, but right now I'm focusing on his strengths.  I know this will build his self confidence, while I expose him to social events slowly.  As he slowly gets used to other people, I know that he will find the courage and interest to tolerate social events more.

A place of his own

How does temperament affect therapy?

Why is the consideration of temperament important for success in reaching therapeutic goals?  It's important because intrinsic motivation works better than extrinsic motivation.  What does that mean?  When a person or child is motivated from within themselves, they are more likely to reach their goals than if they are only being motivated by an outside source: therapist, parent, or other...saying, "Good job!"

When a child is motivated from within themselves, feel good chemicals flood the body and these help to decrease sensory defensiveness, fear, or any other negative emotion.  You may recognize this when your child does something you never thought they would do.  Some parents feel confused by this because "He won't do that at home".  Why won't he do that at home?  If he's motivated by the behavior of other children, then he may "not do that" at home.  Or perhaps he's motivated by the mats on the floor, he's not afraid to fall on the mats.  Or he's motivated by the swing.  It usually takes a lot of observation with trial and error, before we can really see our children's personalities and figure out what motivates them.

Whenever I started to work with a new client, I spent the first sessions observing their behavior and building trust.  Depending on the child's personality, this process may take between 1 session to 16 sessions.  I accomplished most of the therapy by setting up appropriate activities, but I usually follow the child's motivation.  Each session was set up to build on the last session.  The goal was to find out what motivated my client and to build enough trust so that they would be willing to try things that feel uncomfortable. 

As a parent, this process is slightly more complicated, as my own son has taught me.  Your child is more comfortable with you and will be more likely to complain and generally be a more difficult client.  For the first time in my therapy career, I have to use an iPad to bribe my son into therapeutic exercise!  It's so much harder to be a therapy parent!

Placing the easy one closer

What is intrinsic motivation?

When I say intrinsic motivation, I mean that a child is motivated to succeed from within themselves.  In a therapy session, there is usually a combination of intrinsic and extrinsic motivations.  I believe a session is the most successful when there is more intrinsic motivation.

The ultimate goal is a child who is self motivated and also motivated by you.  This is where the parents have the upper hand.  Your child already wants to please you.  They may complain, but they feel very accomplished when they make you proud.  As therapists, we have have to build that kind of relationship.  So being the parent has some perks!

When your child is self motivated, she will practice tasks without prompting.  The feel good chemicals are helping her to keep trying despite the repeated misses and fatigue.  She's excited by the little progress she makes and feels good about the effort she's putting in.  Even if she doesn't completely succeed with the task, she is happy about what she's done.  She can't wait to try again!  This is where extrinsic motivation by the parent or therapist can cement the feeling that she is making progress and she will accomplish this task soon!

If your child is dependent on extrinsic motivation during therapy, the feel good chemicals aren't providing the extra boost.  The misses make him feel bored and exhausted.  Each effort seems a monumental task and he feels like he'll never accomplish this task.  He may want constant praise, food rewards, or other rewards to help him feel accomplished.  This isn't to say all kids who want these rewards are not motivated.  Kids want rewards all the the time.  The difference is realizing if these rewards are the only things making him feel good or if these rewards are a bonus for how good he already feels about his accomplishments.

This theory applies to all kids, including typically developing kids.  However, for children with special needs, motivation is even more important.  Special needs kids have to push through a variety of obstacles that are much harder than the average kid.  Either physical, mental, emotional, or medical problems make reaching milestones difficult and challenging.  It's easier to feel discouraged and defeated, especially when it seems easier for everyone else. 

Easy to learn when you're interested

What is the Occupational Therapist's role?

It's my belief that an occupational therapist (OT) is the facilitator, the professional who finds a way to help your child achieve their goals.  OT's have two basic ways of treating: improving deficits (i.e. strength, coordination, cognitive skills, etc.) and teaching compensatory skills (i.e. using equipment, alternative methods, etc.).  However, without instilling motivation, the child may only do well in therapy and have a hard time generalizing their skills into other areas of their lives. 

Most people don't realize that OT's are trained to work with psychiatric diagnoses, as well as physical ones.  Occupational Therapy is based on holistic health.  OT can only be successful when you are treating the whole person from a mental, emotional, physical, and social perspective.  Modern medicine has been splitting the person into parts for different specialties, but OT is about putting the person back into one whole being. 

This is why it's appropriate to take temperament into consideration when making a treatment plan.  A child's temperament affects every part of their recovery.  It affects what goals are made and how they are reached.  It affects which tasks are used to practice their skills.  When a treatment plan is tailored to the child's temperament, it can instill motivation and really bring out their potential.

Parents are the key in this process.  When a parent is able to define their child's temperament for the therapist, the therapist can tailor their treatment and progress can be observed sooner!  This can also improve the likelihood that treatment will be successful. 

So how do we increase motivation and use it to reach therapeutic goals?  Children are naturally motivated to reach their milestones.  However, this motivation can be affected by their temperament and their experiences.

How does temperament affect reaching milestones?  How do you take temperament into consideration?  What if my child doesn't use words to communicate?  Learn the answers in Part 2!

Thursday, August 2, 2012

Leaving Babyhood Behind

Change is hard.  Before motherhood, change was easy for me.  In fact, I looked forward to change.  I got bored easily and change was a refreshing way to make things interesting.  Then...then, I became a mother.

A very serious baby

 Now, I can't wait to get back "on schedule" and keep things as similar as possible.  I feel scatterbrained and I can't remember where anything is!  Is that normal?  Is it the lack of sleep?  Well, I guess it's all a package.  At least, it's a very cute package!

I used to jeer...yes, jeer at the mother's who obviously cut their own child's hair.  Why don't they take them to a professional?  It looks awful!  Then...I cut my own son's hair.


Why?  I am deathly afraid of taking him to get his haircut.  He is very weary of strangers, he's sensitive to being touched, and I'm afraid of a full out tantrum...when everything is already hard.  So...I cut his bangs, while he was watching Youtube.  It was hard.  It was really hard.  How do the pros do it?  At least, the hair is not poking his eyes anymore...the only reason I was "persuaded" to cut the offending hair.  Otherwise, it's just going to be long.  It's going to stay long!  Even if everyone keeps thinking he's a girl.  A girl wearing very boy clothes. 

For now, our house has 4 pieces of furniture...a table, two chairs, and a highchair.  Unless, you count the boxes and a couple mattresses on the floor.

Ikea table and two chairs

Studying the Alphabet

Baba thinks this is his playroom...since his toys dominate the living area.  There's no place to put the toys.  So they have taken over.

Ikea train set

It's fun to see how he figures out the toys.  I like how he experiments with them.  Stepping on them, moving them, trying to build using different toys together.  He's really becoming a boy...slowly leaving babyhood behind.

He seems to understand more and he seems to want to communicate, but his words are mostly vowel sounds.  He can't seem to imitate sound when he wants, though sometimes he's able to imitate when it's automatic. 

He recognizes the difference between letters and numbers.  He knows what they look like.  When he holds his "letters or numbers", he corrects their orientation correctly.  He can correctly point to "0, 1, 2, 3, 4, 7, 8, 9, and 10".  He knows some of his letters, especially "A, E, O, U, H, B, M, P, Z, S". 

But, he really doesn't seem to know words.  He asks me to repeat the same word...over and over.  It seems like he's having a hard time, processing all the sounds together. 

Yet, he seems to understand things...intuitively.  He is very sensitive to emotions.  My emotions seem to affect him the most.  He will start to whimper, if he thinks I'm hurt.  If I'm anxious, he gets anxious too.  So I do everything possible to control my emotions.  To regulate them and not spend too long on negative emotions.  It's actually been therapeutic for me.  For the first time, in a long time, I'm more positive than negative.  I owe it to him.

Learning to walk on a hill

He's slowly becoming less cautious and a little more willing to explore new places, new obstacles.  I hold back my fears of seeing him fall and I encourage him to make a new pathway for himself.  I let him know that he can be independent...even if he should fall...because he can always get up.  Most of all, I'm always nearby...just in case he needs me to reassure him.


Sometimes, I'm so close to saying "no".  But I take a deep breath, shut my mouth and watch.  Most of the time, he's careful.  Most of the time, he will ask for help...if he really needs it.  So, I am just a guide.  I am here to help him find his way into this world.  So that he can have the confidence to overcome the obstacles that are looming in the way. 

If he can find his independence...even if he's never able to use his voice...he will succeed in finding his own way. 

My only to not get in his way.

Tuesday, July 31, 2012

Therapy Secrets: Wilbarger Deep Pressure and Proprioceptive Technique

Looking dapper!

 I have added new treatment regimens to Baba's daily schedule.  Honestly, I didn't want to and I resisted it for quite some time.  However, I have seen immediate improvement, which is wonderful and awful.  I feel guilty for not doing it sooner.  Sigh.  Anyway, I thought I'd share them with you.

We started the Wilbarger Deep Pressure and Proprioceptive Technique.  It is a Sensory Integration technique that I have used for years in my practice.  We use a special brush (looks like the brush surgeons use to prep for surgery) to brush a child's back and limbs.  Then we gently push various joints together (joint compressions). 

Click here for link location.

My son suffers from mild tactile defensiveness and some sensory modulation difficulties.  I have noticed an increase in tactile (touch) defensiveness since our move, resulting in less solid food consumption.  This isn't unusual, as stress can increase sensory issues.  He was also getting more easily startled, scratching around his diaper, tugging at his clothes, pulling off his sun hat, and generally appeared uncomfortable.

Does it work?
It's only been a few days and there is dramatic improvement.  He seems more comfortable, he isn't tugging on his diaper as much, he is able to tolerate tooth brushing and face washing, he kept his sun hat on, and does not seem as easily startled. 

Is it easy?
Yes, it's easy to learn.  No, it's not easy to brush a very mobile toddler, every 2 hours.  At least I can rest when he's sleeping!

Who should do it?
Any child who experiences sensory modulation problems could potentially benefit from such a program. Seriously, I used it on almost 90% of my caseload.  It really seemed to help children modulate their senses, calming their mind and body, so they could concentrate on the rest of the therapy session.  Children with Autism, cerebral palsy, or any illness that causes movement issues are also likely to suffer at least a mild sensory processing issue, so they would benefit from this technique too.  

Who can do it?
Anyone can be trained to do this technique.  In fact, it has to be implemented by parents, babysitters, nannies, teachers, aides, or any person who will be watching your child for more than 2 hours. 

It is very important to be trained, for improper technique can actually make things worse.  But it's worth the effort. 

How long do I have to do it? 
It's usually for at least 2 weeks of intense treatment (brushing every 2 hours when awake) and than as needed for high need periods, or a regimen recommended by your therapist.  It can be helpful for children who really respond to deep touch.

I hope you found this helpful.  For more information and training ask your occupational therapist for details.  NOTE:  Not all OT's are trained in this technique, though many are.  Ask your therapist if they have been trained.  If they don't have the training, ask if they can refer you to someone with the training to help you.

Can you show me how to do it online?
It's really not a good idea to get this training by video.  It's really important to know how hard to push, how to set up your child for the technique, how to get over any resistance, and what pattern of movement to follow.  It's also important for a trained therapist to give you a sensory diet...which is part of this program.  They can only do that, if they know your child and is able to prescribe the appropriate program.

Here are some links for more information.

For general information on the technique:

More detailed information on why we use this technique despite lack of research:

If you want very detailed information:

Have a great day!


Update and precautions:
Baba is having a flare of of eczema so we have to stop the treatment until the flare up goes away.  It's usually not a big problem for mild skin issues, but it's not a good idea to brush on any part of the skin with an open soar.  If it's a small area and you can avoid brushing it, then it's probably okay to continue the program.  However, it's best to ask your occupational therapist for recommendations. 

Thursday, July 26, 2012

15 months after a baby stroke and other updates

It's been a long time since I've blogged and I'm sorry for the absence.  I've been so crazy busy with moving.  Baba is a trooper taking in the changes without too much trouble.  He seems to grow more cognitively than physically now and I'm always amazed at how much he seems to know or understand.  Yeah.  I'm being THAT MOM...the one who thinks her kid is brilliant.  I'm just so happy to see the progress he's making and it does seem amazing to me.  Not that long ago, I wasn't sure he would be able to understand my everything above that seems genius.  He loves his letters and numbers!  He studies them everyday...on his own volition.  Only this week, he started to be interested in words.  Isn't that backwards?  I don't know, but I'm letting him lead the way.  Who cares if it's backwards?

We are still breast feeding at 15 months.  In the beginning, I wasn't sure if I'd last 3 months, but now I am determined to let him wean at his own pace.  All these changes are hard on the little guy, so it helps to have a safe place to land.  If we had stopped breastfeeding, we would have had to turn to formula because he is still not eating much solid food.  I think it's a combination of difficulty managing the food in his mouth and sensitivity to touch.  He seems more sensitive to touch in his mouth.  Brushing his teeth is quite a production.  It gives me a little relief that I am still able to breastfeed.  I have a feeling that he would reject bottles and formula at this point...though he had supplemental feelings as a newborn.

It also gives me time to figure out how to present the food in a more tantalizing way.  In a way that would make it easier to eat.  It also gives me time to figure out what therapy techniques to add to the regimen.  I've always found dysphasia and feeding therapy daunting.  I also need to find a specialist, who can give me specifics about babies, since it's not my area of expertise. 

Trouble eating, translates to trouble forming sounds, which of course affects speech.  So Baba isn't talking yet.  He can say "mama", and I've heard him repeat a few sounds like "a".  But he doesn't consistently "speak".  He does, however, communicate using gestures and sounds.  He also seems to understand simple language, though it's hard to say how much. 

My main concern has to do with his hearing.  I know he can hear me, but he doesn't seem to be able to locate the direction of the sound.  When calls out for me and I answer him from behind, he doesn't turn towards me.  He keeps looking for me in front and if I don't touch him, he starts freaking out because he can't find me. 

I would ask the pediatrician, but we don't have one yet.  We are in the process of finding one, a not so easy task.  Sigh...

My mother is fighting cancer like a warrior, but it isn't easy.  My brother has really stepped up to the plate and is caring for her with supreme kindness and love.  It makes being far away seem less awful.  My mom understands why I chose to move.  She knows I did it for my son, to give him a better life.  Still, it's hard for her.  It's hard for us.

I've been struggling with the "art of blogging".  I started this blog to share our story.  I wanted to help other parents going through similar circumstances and hopefully be a source of helpful information.  I still do.  Yet they're is so much going on and so little time to spend writing.  I also struggle with how much to share about my personal life.  I tend to be a private person in the public venue, though I tend to be quite open with my circle of friends. 

As far as reading other blogs, I personally gravitate toward the ones who write positive messages.  It's comforting and fun to read.  Yet I wonder, are their lives really this magical or are they simply writing to encourage, not to share sordid details of their lives.  Where do I fit in this "blog world"?

I guess I don't know where this blog is going.  I feel like my mission is unclear and that makes writing more difficult.  I feel lost and I'm not sure when I'll find myself again.  I'm going to be 40 in a month.  Is this just a midlife crisis?  I hope that I will figure things out soon.  I have so much to share.  Things will calm down after we move to our permanent home in 3 weeks and we finally settle down.  We moved 3000 miles to the New England coast.  It's really beautiful and really hot! 

I hope you are having fun and staying cool! 

p.s.  a photo story

The future sometimes seems ominous.
Sometimes we have to be willing to take a step in a new direction.
Sometimes we have to learn something new.
Sometimes it feels like the obstacles are insurmountable.
New starts can be a little scary.
But if we keep smiling, we may just be able to succeed.

Friday, May 18, 2012

Avoiding Breast Cancer

I read the titles of all the new posts I missed yesterday.  I click on a few random posts that seem pretty or thoughtful.  I try to immerse my heart into the world of everyone else's problems.  If I just keep reading, I'll forget.  I'll be able to to avoid the looming thoughts that threaten to overwhelm and destroy my world as I know it.  My mom's cancer has spread...while on chemo for a decided to hit the lungs...and now the brain.  I can't think.  I can't feel.  I don't know where to put my attention, my brain, but especially my heart.  We're moving miles away in 2 weeks.  Miles and miles from where my mom will be fighting for her life.  My mom who can barely speak English, with my brother who can barely speak at all.  We're moving for so many good reasons.  We have to move.  She was cancer free when we sister and I.  We were optimistic.  We wanted to start a new life. We need to start a new life.  And yet, my heart doesn't know what to do. 

Wednesday, May 9, 2012

Wordless Wednesday

my serious baby

loves the carousel

helpful friend

save the planet

testing the ground