Special Help for Special Needs

#221 Serving is Caring

Today my little girl and I got to spend some quality time with the folks at the Pediatric Urgent Care.  No big deal, she just had a little blunt force trauma to the head.  She is alright.  It looked and sounded worse that it was.

While dawdling in the waiting room, I watched the clerk that was checking people in.  He clearly did not know what he was doing.  I know this because he had to turn around and ask somebody else a question before every mouse click.  The most interesting thing about this clerk was watching how he managed to interact with scared and sick children, and parents that were on edge.  He appeared to be the only one in the building that was completely indifferent to everything going on around him.

Maybe I’m wrong, Maybe he was passionate about his work and was genuinely concerned about the children and families that came through.  If so, he was doing a masterful job of disguising his feeling with his irritated facial expressions, his monotone voice inflection, the blank eye gaze, and the flippant manner he used to toss a clipboard at a mother.  The icing on the cake was the enormous full-body stretch he performed in his chair while conversing with the mother of an infant.  Wow!  All I could think was that this guy was a total loser and the hospital needed to set him free to find a vocation that was more suited to his unbecoming demeanor.

I share this story because it reminds me that serving others is about caring.  The clerk was taking information from people and handing out forms but he was not serving.  Serving involves caring.  Those with the most tedious and low-level positions can make or break an experience with a customer, client, or family by caring.  Care about the quality of your work, care about how you make others feel, care about how you are perceived, care about brightening someone’s day or lightening someone’s load.  Serving is based on caring.  

If you are a teacher, a therapist, a doctor, a nurse, or the clerk at a pediatric urgent care, you will do yourself and everyone else a favor if you start caring more, because true service starts with caring.

Please share this with friends, families, professionals, and clerks that work with children and their families.  You can receive regular perspective, insight, and suggestions for working with children with special needs by “liking” this page or use your RSS reader to subscribe to Special Help for Special Needs.

 

#144 Shopping for a Therapist

When you start looking for a therapist, think of it like you are looking for dentist, or an optometrist.  Sometimes they will accept your insurance and sometimes they don’t.

Hopefully, insurance acceptance is not the only selection factor.  It is not helpful if the therapist accepts your insurance, but your child (and you) hate going, and there doesn’t seem to be a lot of progress.  You must demand more.

Look for someone who is a good fit for your child.  Even though some therapists may be amazing with one child, it could clash with another child. 

Seek out a therapist that has the heart of a teacher.  The job of the therapist is not just to help your kid to do it (whatever “it” is).  Their job is to get the child to do the skill, and then teach you how to elicit the skill.  Therapists play a supporting role for parents.  We guide, give suggestions, model techniques, and explain.  You are the one who will be the primary facilitator of the child’s new skills and we are here to teach you. 

When you call a therapist, remember that you have options.  Shop around.  Ask for a trial period of therapy to see if it will be a good fit.  Find out how they will deal with questions between therapy sessions.  Watch your children to see if they like the person.  If they don’t accept your insurance and their rate is unaffordable, ask if some sort of arrangement can be made to trade therapy for something you could offer (i.e. therapy for flying lessons, web page development, piano lessons, concert tickets.)  I know this suggestion seems crazy, but what if they said yes.  You would save a lot of money, your child would get the therapy they need, and the therapist would get something they highly desire.

The main thing is that you remember that you are the consumer.  So get the best possible service you can, not just the first listing in the phone book, the first place in your insurance provider network, or the guy you see on the billboard driving to work.

Please share this with anyone who may be looking for a new therapist.  They will probably thank you. 

Until Tomorrow-
Dan.   

#142 You Can't Just Take a Pill

Therapy is not like OTC medicine.  There is no such thing as running into the pharmacy, and grabbing a bottle sensory integration, or improved processing skills.    Often, if you have a headache you can swallow a few Advil and you are back to normal in an hour but the medicine wears off and the headaches may return.  If you have a recurring problem with headaches you may find yourself taking more and more medicine because the normal dosage is less effective.

Therapy is usually the other way around.  Your child may start off needing frequent, intense therapy sessions (i.e. a high dose) to get the ball rolling.  But once they are in the groove, therapy often reduces in intensity and frequency because a lesser amount delivers sustained benefit.  Therapy also becomes more effect with time because the therapist and the child get in sync with each other.  Parents (that are involved) begin to follow the lead of the therapist and they see carryover into different settings.   Finally, therapy usually becomes more effective with time, because the child begins to experience the benefits of their new skills and their challenges are more easily managed.  Success leads to more success.

Please pass this post along to anyone who has just started therapy or who are wary about making an investment in therapy. 

#130 The 10,000 Hour Rule

You might have heard of this rule, it basically says that the key to success in any field is, to a large extent, a matter of practicing a specific task for a total of around 10,000 hours.  This was make known by Malcolm Gladwell in his eye-opening book:  Outliers

To acquire 10,000 hours a person must spend about 8 hours a day, 5 days a week for 5 years.  That’s a lot of time.  It seems as though it takes about that that much time for a skill to become ingrained, second-nature, intuitive, or whatever you want to call it.  At the 10000 benchmark a person has probably moved to the arena of being a master craftsman.

Why bring this up?  The readers of this blog have children or serve children with special needs.  Since children with special needs often need specialists for many areas of their life, you should seek out the best available.  The best in any field have a huge amount of experience.  When you need an expert, one of the best in the world, ask them how long they have specialized in dealing with your particular type of problem or diagnosis.  You are looking for someone with at least 5 years experience because they need 10000 under their belt to begin being one of the best in the world. 

One sidebar- make sure the person who has worked for 5 years has had 5 years of experience, and not had one year of experience repeated 5 times.

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#106 New Options in Communcation for People with Special Needs

Mobile technology is revolutionizing the way some people with special need communicate.  Some of these individuals have discovered and fallen in love with the iPad and iPhone.  Older Augmentative communication (AAC) devices were much bigger, heavier and could drew a lot of (unwanted) attention.  An iPad is the size of a pad of notebook paper, weighs about 1.3 pounds and it certainly draws attention- mainly jealous attention. 

An iPad is not appropriate for everyone.  A person needs to be able use a display that changes and will need to be able to use touch to access the screen.  However if an individual is a good candidate for one of these devices, it is likely that a new world of communication may open for them.

One more thing- a top of the line iPad with a good collection of accessories will cost about $1000.  A similar but more traditional AAC device such as a Dynavox V starts at $7820 without any accessories.  While some proponents of well-established AAC products might say that this is comparing apples and oranges, the point is that the iPhone and iPad are paving a new path for individuals with communication needs. 

If your child or student already uses one of these device, let us know how it has been used and  how their life is different because of the device.

Tomorrow, I will share some of the apps I currently use with clients.

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#91 Our Clients are Successful Because...

their parents/caregivers are focused and committed.  That may not sound like an earth-shaking concept, but getting and keeping a rock-solid committment from a family is often the greatest hurdle to a child’s success. 

Today I will begin sharing our simple but effective strategies for achieving this focus and commitment in the parents of our clients.  

1. We do not accept insurance-  Before you come to see us we make it very clear that we will not accept insurance or Medicaid.  It is human nature to be very frugal with your healthcare dollars (until you reach your deductible).  Once a deductible has been met, most people end up using health care services much more freely because it doesn’t cost them anything- or at least much less.  When it doesn’t cost you anything, it not a concern and therapy instantly loses its priority.  
2. You pay for therapy up front at the beginning of the month-  Since we don’t accept insurance, we must be paid in cash or check.  99% of our clients pay for the entire month before therapy begins.  This has resulted in almost no absences from therapy.  We always credit a families bill if the child is sick or a family emergency comes up, but this policy makes therapy a priority for almost everyone.  And since we only take cash or checks, it forces a different mindset than if you hand over a credit card or especially an insurance card.  The mindset we seek is this:  I am sacrificing so that my child will achieve and win.

These strategies/policies are not intended to be harsh or punitive.  They are intended to drive commitment and focus in parents and caregivers and they have proven remarkably successful. 

Tomorrow I will share strategies 3 and 4 for making rapid progress in therapy.

Think these strategies sound crazy?  Respond to this post.  Think these sound great?   I want to hear from you.

Feel free to share this article with your friends using the Facebook share button or consider subscribing to this blog using your RSS reader or by adding this page to your favorites in Facebook.

Until tomorrow, Dan

#62 An Extraordinary Child with a Common Problem

Most children I get to help are like Jackson.  He is a young child with delayed speech and language.  When it seemed like he should have been talking, but he wasn’t, his mother became concerned and asked for an evaluation from the Missouri Early Intervention Program.  In Missouri, a child has to have at least a 50% delay to qualify for services.

During the evaluation it was quickly determined that his comprehension was appropriate, and since he was producing a few sounds and could express his wants through pointing and pulling his parents to desired objects, he did not qualify for their services. 

I started working with Jackson about 6 months ago.  At that time he communicated using one word utterances and most of his words were difficult to understand because he omitted almost all sounds at the end of words and distorted many others.  Even though he rarely got frustrated, his parents were exasperated at times because they could not guess what he wanted to tell them. 

When he comes to therapy, he knows we are going to play the whole time.  Sometimes we play baseball and he plays full time hitter or full time pitcher.  He also serves as the coach and gives me frequent instruction on where to run and how to hold the bat.  His motivation for games keeps him engaged even though his communication skills are stretched every session. 

Now he is 80% intelligible, he speaks using age-appropriate utterance length, and everyone’s anxiety about his communication has faded away.  Although his speech is not perfect yet, he has demonstrated his potential for rapidly gaining skills.  No one should think that an hour spent with me every other week for six months will result in the remarkable progress that Jackson has achieved.  His mom, dad,  grandparents, and family friends have consistently given him opportunities to practice, they praise him when he does well, and prompt him to correct his errors.

Many reading this story could substitute their child’s name for Jackson and it would describe them perfectly because Jackson is typical of most children with communication delays.  If your family is in a similar situation, take heart because his rapid progress is testimony to what can be done when a determined family is given a little direction and they provide consistent reinforcement at home.

#61 Tragedy and a Fight for Hope

Seven years ago, while visiting his stepfather at a construction site, Collin was tragically injured when a scissor lift fell resulting in a traumatic brain injury, many broken bones, and paralysis from the neck down.  His left arm was crushed in the accident and a subsequent infect required the amputation of his left arm below the elbow. 

For several weeks he barely held onto life, but after he was stabilized he was transferred to Rankin Jordan- a specialty pediatric hospital in St. Louis, MO. There he recovered much of his cognitive abilities, but struggled to make progress physically.  After several months of inpatient rehabilitation, he was discharged and began receiving therapy services through his local school district. 

Collin's extensive need for special equipment required the family to move.  They needed a house that was wheelchair accessible and could accommodate the equipment needed for his care.  With the help of the Children’s Miracle Network, Collin obtained a customized wheelchair, a custom bed to prevent bedsores, a lift to move him from his bed to the wheelchair, and a sophisticated communication device known as a Dynavox.

The Dynavox is a touch screen computer that enables communication through the selection of pictures.  The device is capable of producing speech, controlling the television, adjusting the thermostat, and much more.  However, his paralysis has kept him from using the device to the extent that he is mentally capable.  Since he has demonstrated the most body control through head rotation, mouth movement, and eye gaze/blink, a series of tools were put in place for him to access the device. 

Collin now uses buttons that are mounted on either side of his head or under his chin to select icons on the screen.  He also uses a Headmouse Extreme to control the device.  The Headmouse Extreme uses a camera to track a small reflective sticker placed on Collin's forehead.  When the reflective sticker moves, the cursor on the screen moves. 

While he continues to work hard to regain the use of his use of his body, he also knows how to play hard.  He loves to listen to Taylor Swift, and his laugh can be heard all over the house when Larry the Cable Guy is on TV.  He takes in at least one book a week and has frequent visits from his friends and family.  He loves to get out of the house to go to the movies and concerts. 

While Collin’s story is heartbreaking, and it is easy to feel sorry for him, he is a tough young man and isn’t looking for pity.  He wants to get on with life.  Yes, I know he would do anything to change his circumstances, but he and his family press on everyday striving to make the most of the life they have.  From this family I have learned that hope doesn’t always get delivered on a silver platter, sometimes you have to fight to find hope and staying optimistic sometimes is the toughest challenge of all. 

Collin turned 21 yesterday.  He celebrated with a night on the town and spent the day with his family.

To Collin and his family:  Keep up the fight.  Never lose your hope.

 

#60 Rapid Intervention, Bionic Implants, and Dedication

When Hunter (blue coat) was 4 years old he fell and bumped his head while playing with his brother.  He felt fine, but when he woke up the next morning, he could not hear anything.  Within 24 hours he went from having normal hearing to a profound loss in both ears. 

His parents and I were friends before his accident, so as soon as I saw them after his accident I knew something was wrong.  His dad, normally an unshakeable guy, was in tears and it was obvious that his mom had been crying.  After a frustrating visit to the local audiologist, they came away without any answers and without hope.

However, one thing I have learned about this family- when they set their mind on something they will not be denied.  They were going to find out what happened and what to do about his loss of hearing.  The were even scared that something worse may happen the next bumped his head, as children are apt to do.  A few hours and several phone calls after the visit to the local audiologist, they had an appointment with the Audiology department at St. Louis Children’s Hospital (for the next day!).

I was asked to go to St. Louis with them to provide another set of ears, since his parents were understandable on edge.  It was quickly determined that he had been born with abnormally shaped cochlea (the inner part of the ear) and the bump to his head had caused a permanent loss of hearing in both ears.  A trial pair of hearing aids was used for a few weeks.  These helped in the right ear, but he was going to require a cochlear implant in his left ear. 

The surgery could not be performed for nearly a year, and in that time he demonstrated a loss of some language skills and he began using speech typical of a deaf person.  To complicate the issue, he began to be self-conscious about speaking with others because he knew others had a hard time understanding him. 

Immediately after the implant surgery he began speech therapy in order to recover his speech skills and head off other long-term communication problems.  After 12 months of diligent work by Hunter,  his family and team of specialists, he was discharged from therapy and is now an expert at using his implant and compensation strategies to interact with his family, peers, and teachers. 

Hunter is a poster child for rapid intervention, medical technology, and the dedication.  Great work, Hunter! 

#59 Perceptive, Sassy, and Fun-lovin

Meet Alexa.  She is one of my favorite people in the world.  Out of everyone I write about this week, she is the person I know the best because she is my niece. 

Alexa was diagnosed with Down syndrome before she was born.  She had open heart surgery when she was four months old and she has needed to participate in speech therapy, occupational therapy, and physical therapy for almost all of her life.   You might think that these hurdles have been barriers to a fun-filled childhood, but you would be wrong.

Let me tell you about her.  Church is a big part of her life.  Every Sunday she wiggles in between people to sit on the pew with my family.  She sings loudly and says "hi" to everyone in the building at the end of services.  She has an amazing memory for names and faces.  She can easily name every person in our congregation, and most of the students in her school.

She loves school and has lots of friends, but her best friends are her sisters and cousins.  During family get-togethers you can count on them playing dress-up and hide-and-go seek for hours.  When people decide to go home, she will likely ask if she can go home with them.  If they say no, she will immediately invite you to her house. 

Like all children, she occasionally disobeys her parents or gets into something she shouldn't.  Her mom and dad have to do little more that give her the "You're in trouble" look, and she will start bawling.  She is very sensitive to others feelings and perceives when others are happy or upset.  when you laugh, she will laugh with you.  When you cry, she will put her hand on your shoulder and ask you if you're okay. 

She has a sassy streak.  If you visited her house you might finding her having a pretend conversation with her cousins or sisters.  She also might be acting out a movie that she has seen recently.  (For 6 months she referred to everyone in the house as if they were the characters from Little House On The Prairie!)

Alexa is 'fun-lovin'.  Her energy and sociability often make her the life of the party.  It will be your good fortune if you ever get to meet my niece, Alexa.