Wednesday, November 30, 2011

Is therapy working?

Did the therapy really help my son?

A parent once asked me, "How do you know that a certain therapeutic method is working?  What if the problem got better spontaneously?  How can you really tell?"  I thought it was a really good question.  Don't you?

I certainly wouldn't want to waste my time with methods that weren't working.  I want to make sure that my efforts are not in vain.  So how do I know?

When I'm treating a client, I always have very specific goals.  Every activity I do with a child has a specific purpose.  A parent watching may think it just looks like fun and play, but it's therapy disguised as play.  Every task is graded to be at just the right amount of challenge: easy enough to accomplish, but hard enough to push to the next level.  This is the basis of sensory integration treatment.

What does this look like in practice?  Let me give you an example.

Allan (not his real name) was a six year old boy diagnosed with moderate-severe Autism.  He did not use words or gestures to communicate.  He had severe sensory problems which interfered with his family, social, and school life.  He frequently used flicking saliva with his fingers as a self stimulatory behavior.

When I evaluated Allan, he ran around the room in circles.  He appeared fearful and anxious.  When I observed him in class, he appeared to have difficulty sitting still and focusing on tasks.  During recess he did not attempt to engage in social contact with either teachers or other students.  He spent the entire time trying to find a way to flick saliva without getting stopped by a staff member.

In my professional opinion, I thought Allan's sensory issues and his inability to communicate his needs or desires prevented his full participation in school activities.  I began to see Allan twice a week for occupational therapy.  He also received speech therapy twice a week, play therapy once a week, and music therapy once a week.  Allan was enrolled in a special ed. class, with a 3 to 1, student to teacher ratio.

In 6 months, Allan was able to participate actively in circle, his self stimulatory behaviors decreased, he occasionally made social contact with staff members, his anxiety appeared significantly reduced, and he could speak in two to three word sentences!  He was also able to tolerate more outings and new experiences! 

How did I help Allan to reach his goals?  I had to find and use his inner motivation.  I had to start at his level.  In the beginning, he's only comfort was the visual and tactile stimulation of flicking his saliva.  I had to give him a replacement behavior that gave him more satisfaction and the means to communicate his desire for it.

After trying water, I tried bubbles to entice him.  It was a success!  He absolutely loved it!  But how would he request for it?  Since communicating his sensory needs was vital to his progress, I began to work on recognizing and communicating his needs.

The first time I used bubbles, I used it freely without expecting him to request it.  During other tasks, I would bring out the bubbles when I could see that he needed it (i.e. fidgeting, frustrated, decreased attention, attempt to run, etc.).  It was important to show him that bubbles was more effective than flicking saliva.  It's usually ineffective to try to explain why a behavior is inappropriate to a child that isn't using words to communicate and who doesn't know any other way to satisfy his sensory needs.

It was also important to show him that I understood his sensory needs and that I wouldn't try to prevent appropriate sensory seeking.  It was also a way to build his trust in me.  This trust would become the foundation of therapy.  I always take time to build this trust, so my client will try things they wouldn't normally try.   

The second time, I placed the bottle within sight, but not within reach.  This time I waited until he looked at the bottle, before saying, "You want bubble!"  Then I would reward him with extended bubble time.  I would still give him bubble time without request, if he needed it, but the amount of time would be shorter.  Eventually, he learned that requesting bubbles got him greater satisfaction.  "Ah-ha!  Communicating gets me what I want or need!"

At the fourth session, he began to reach for the bottle.  I would immediately affirm what he wanted and give him extended bubble time.  By the sixth session, I put the bottle right in front of me.  This made it possible to make eye contact before rewarding him.  Eventually, he would initiate eye contact and I would reward him with extended bubble time.

When he was consistently able to make eye contact to initiate communication, I would ask him to approximate the "b" sound.  At first I would reward any attempt because it was obviously difficult.  He would use his whole body to try to get the sound out. 

When he was consistently able to approximate the "b" sound, I would ask him to say "ba-ba".  Every time he mastered a request, I increased the difficulty.  Every initial attempt was rewarded with extra time.

Eventually, he was able to say "bubbles", "want bubbles", and "I want bubbles".  The first time he was able to say the full sentence, I rewarded him with bubbles for the rest of the session.  It turned out to be a turning point.  He began to communicate his needs and desires in words.  He began talking all the time!

This wasn't the only thing we worked on in therapy, but it was a focal point.  Obviously, speech therapy and classroom staff also worked on communication as well.  But in OT, the focus was on recognizing and communicating his sensory needs and using appropriate sensory stimulation.  AS the results show, we reached these goals. 

How do I know it was the therapy?  Because each session was focused on smaller goals.  Whenever we achieved these smaller goals, I readjusted the goals for the next session.  Reaching these smaller goals helped me to assess if therapy was working.

How do you know if therapy is working for your child?  Ask your therapist for more details about the short term goals.  Walking may be the long term goal, but what stepping stones will be achieved first?  What methods is the therapist using to achieve these goals and how can you supplement at home?

Actually providing therapy at home will help you see, or actually feel the progress.  You'll feel how your child needs less and less help.

The parent above was asking me about her son who was suffering from difficult bowel movements.  He would only have one bowel movement every 14 days and it would cause him pain for two hours.  He had suffered botulism as a 4 month old and spent a month in NICU.  I showed her a few Masgutova techniques and a few therapeutic massage techniques as well. 

 The next day she reported that her son immediately started to pass gas after the first session.  Within 24 hours, he had a "stealth bowel movement".  For the first time, he had a painless and uneventful poop session.  I suggested she continue treatment for 4 weeks.

For two weeks she followed the suggested regimen with several resulting "stealth poops".  However, illness delayed treatment one week.  He immediately stopped pooping.  She continued therapy again and eventually saw permanent results.  She was convinced that these techniques had worked for her son.

How about my son?  Yes.  Therapy has definitely helped my son.  I can tell that his movements are not as smooth on the days we miss therapy.  In fact, when he was 4 months old, we took a 2 week therapy break.  I wanted to enjoy being together without thinking about strokes, therapy, or the future.  We had a great time, but his development definitely slowed down.

After the 2 week break, we started a more relaxed version of therapy, by fitting it in throughout the day.  I also don't stress out if we miss specific techniques for a day or two.  We do what we can and enjoy being together. 


Thursday, November 24, 2011

I understand now...

Going home!!

Therapy for my son formed into a system organically.  Since it was my first time working with a newborn, I had to figure out how to apply treatment methods in a whole new way.

The hospital did not send me therapy right away.  The doctors figured we'd wait and see, but that didn't make any sense to me.  When treating adults who suffer strokes, we know that we see the most gains within the first 6 months after the stroke.  Then we see slower, but steady gains for the first 2 years.  After 2 years, the gains are slower and sporadic.

 Of course, children's' brains are more flexible.  The timeline is probably different.  But why wait to see a problem?  Why not help the brain create healthy pathways from the start?

That's why I started therapy the day he came home.  I didn't want to take a chance that his brain would have difficulty creating pathways so he could reach his milestones.

Honestly, it was really hard.  I was frequently overwhelmed.  I couldn't believe how all the parents I worked with survived.  My respect for all parents with special needs children increased with a deeper understanding that comes only with a shared experience. 

It took me 6 months to come out of my shell and look for support.  I was really surprised to find a large community of supportive parents sharing their experience with the world.  I don't know how many times I cried and felt inspired by both the children and their parents. 

So for all you amazing parents...and their even more amazing children...Thank you for sharing your life!

I hope to use this medium to share our story, find solace in the midst of craziness, and share my knowledge with anyone who might find it helpful.

Wednesday, November 23, 2011

Treating a baby stroke

 How do you heal a baby who suffers a stroke?  I asked the same question too.  Although I've been an occupational therapist for 15 years, I worked with patients 3 years old and older.  I really had no experience working with babies!  It's also my first experience having a child, so I pretty much had no experience with babies at all.

I'd often wondered what it would be like to be a parent to a special needs child.  I worked with a lot of parents and often empathized with their situation, but I knew I didn't understand what it was really like to be in their position.  How do they do it?

The answer was simple, they don't have a choice.  It's a steep learning curve and it's really overwhelming, but you just don't have a choice.  You have to use all your resources to help your child reach their potential.  You do what you can and you accept that it might not be everything you wish you could do.

Though I wish my baby never had a stroke, we are lucky that I'm a trained therapist and my learning curve is not as steep.  I was able to get extra training and successfully treat my child.

Truthfully, I'm amazed at how well he is doing!  I really didn't expect these amazing results!  Though he will continue to need therapy for some time, for now he is reaching all his milestones.  The future seems brighter for my little guy!

In this post, I will just give the overall treatment methods.  Unless you're a therapist, some of them won't make any sense.  However, future detailed posts will hopefully be understandable to everyone.

Treatment Methods

1.   Masgutova Method
2.   NDT (Neuro-developmental Treatment) or Bobath
3.   Sensory Integration Treatment
4.   Therapeutic Activities/Exercises
5.   Cognitive Rehabilitation
6.   Breastfeeding (I know this can be a hot topic, but there are reasons why I list it here)
7.   Co-sleeping  (Another hot topic, but bear with me.  The reasons are therapeutic)
8.   Using baby carrier 3 or more hours a day...for therapeutic reasons
9.   Therapeutic Massage
10.  Other...all the things that may not have an official name

What was I treating?

1.  Right-sided weakness of arm, trunk, and leg
2.  Left-sided weakness of left face/mouth muscles
3.  Right arm spasticity (increased muscle tone)
4.  General extension posture (head, arms, legs pulled towards back)
5.  Sensitivity to tactile input (touch)
6.  Sensitivity to vestibular input (movement) and hearing
7.  Fine motor problems

      Wow!  That was hard to write.  I've been so busy "doing" that I didn't have time to reflect until now.

      So this is just the beginning.  I will be describing each treatment method, how I applied it to my son, and why I used the specific methods.  I will also be sharing our adventures as they happen, for I wouldn't want you to think that we just do therapy!

      Thus we must end with a cute picture!

      Baba at 5 months

      I know he's my son, but can I gush a little?  Isn't he adorable?

      Sunday, November 20, 2011

      My baby is in NICU

      This is the narrative of my first visit to NICU, when I knew about the seizures, but not the stroke.

      The entrance to the NICU is guarded.  They check our identification bracelets and let us in.  We pass 3 separate NICU rooms, turn a corner, pass the staff room, and face a closed room.  Just briefly pausing, my sister opens the door.

      A large island counter blocks our way, so we awkwardly move my wheelchair out of the way so my sister can close the door.  Large mechanical incubators are pushed up against the walls. 

      They look like they’re swallowing their babies.  Next to them are smaller machines beeping, demanding our attention.  

      “Baby’s heart rate down.”  “Baby’s oxygen level low.”  “Baby’s having a seizure.”

      My sister and I look around, trying not to look at the babies, afraid to see their pain, their loneliness in this cold, medicinal room.  I feel like I should know where my baby is by some mommy instinct, but I don’t.  I’m already failing in motherhood 101.  

      “What are you doing here?”  Someone asks.  That’s what I hear, but I realize she asked if we needed help.

      “I’m here to see my son.”

      “What’s your name?”

      My sister murmurs my name after she realizes I look confused.

      “Right corner.”

      “Baby’s heart rate down.”  “Baby’s oxygen level low.”  “Baby’s having a seizure.”

      In a brightly lit corner, my son is being warmed by a machine simulating my heat.  My sister pushes me close and I can see him through the glass, sleeping.  He’s so tiny.  He can’t be sick.  It just isn’t right.  I reach out to touch him, but the nurse interrupts.

      “You have to suit up.  He might have an infection.”

      She hands us two paper gowns, two masks, and two pairs of gloves.  

      How will my son recognize me?  At least he’s sleeping.  He won’t be scared of the giant yellow monster.  He’s on his back, but facing away from me.  I can’t see his face.  I can’t see his face! 

      I wince through the pain and use the mechanical heating machine to support me as I stand up.  
      His face looks so peaceful, but then he frowns.   

      Where have you been mommy?  How could you leave me?

      No.  I didn’t leave you.  I’m here.  I’m here my son.  

      Look at what they did to me.  They hurt me.

      His hand moves towards me and I realize that it’s splinted and a needle is stuck in his tiny little hand.  The same needle that hurt like crazy, when they stuck it in me yesterday, just in case they needed to medicate me for labor.  His needle is hooked up to an IV, half his size.  I wince, feeling his pain.  How did they get that thing in his hand?  

      I look up at his face and realize that his little hat has a hole on top and a mass of wires are protruding from his head.  Suddenly a wining noise starts and I see that his other arm is attached to a blood pressure cuff.  It takes his blood pressure and beeps.  Are those numbers supposed to be normal?  I look down at his heart, a metal duck is stuck to his chest, with a wire attached.  As my eyes follow the wire, I see another wire stuck to my son’s foot.  It’s flashing a red light.  

      I look back up to his face.   As if on cue, he frowns again.  Something bursts inside me and the dam overflows, flooding my face.  I don’t know why I’m crying.  I know that the wires are just monitoring him.  They don’t hurt.  He’s not on life support.  Yet I can’t stop the flood of tears streaming down my desperate face.  My sister starts to cry too.  We cry silently.  Trying to hide our tears from my sleeping son.  My son who cried when I yelped in pain yesterday.

      It took 15 minutes before the nurse noticed our silent tears.  

      “He’s okay.  He’s on medication to control his seizures, but otherwise he’s doing well.”

      Words could not be formed.  I just nodded and continued to cry for another 15 minutes.  

      Saturday, November 19, 2011

      My baby suffers a stroke...

      Seven months ago, the future of my son was bleak and uncertain.  On his first day of life, he suffered a major stroke to the left side of his brain.  He was suffering from seizures and he was living in the NICU (Neonatal Intensive Care Unit). 

      As an occupational therapist, I knew that his life would be different from the one I had envisioned.  I was prepared to accept that my child would be different.

      I was ready to deal with right-sided weakness, trouble breastfeeding, trouble holding up his head, trouble rolling, trouble sitting up, trouble swallowing solid food, trouble crawling, and many other milestones.

      I prepared my heart and mind for the challenges to follow.  I was going to be a super mom/therapist.  I would do everything in my power to help my son reach his potential.

      I knew it wasn't going to be easy.  I knew my own illness would make things even more difficult. 

       Almost 6 months old

      Things didn't turn out as difficult as I imagined.

      Not only is he reaching his milestones, he's reaching some of them ahead of schedule!  How did we do it?  That's coming next!  Stay tuned!