Now, don’t get me wrong, my current job has given me a lot of personal and professional growth and has taught me that there are different ways of working.  For the first time in my life, I have work/life balance.  I can do fun things outside of work.  Work is not my life.  When looking at new positions, I have the debate with myself whether career advancement or continued work/life balance is more important to me.  See, I’ve also imagined myself being a workaholic and have also been driven to try to make the field better.  I’m not saying that I can’t do this with a job with work/life balance, but I think I’d be making more of a difference  with a “career advancement” job.  Somehow, I feel like I am selling out somehow.  And yet, the idea of being gone 12 hours a day just doesn’t appeal to me.  I really enjoy having balance and time to do things I enjoy…

So, I’ve been pondering why I like some clients better than others.  Naturally, some people are just more endearing than others.  However, these are not the clients that I get excited to see or that I really adore (usually).  I adore my clients with autism the most.  For some reason, I most enjoy working with children who, by “definition” of their diagnosis, have difficulty forming and maintaining social interaction.  I think that is why I like them so much, I have to work for the reciprocity and it is so much more rewarding when I get it.  It is so rewarding when I get that sideways look or that big smile of anticipation or pure joy.  Children with autism also tend to have sensory processing needs.  As a part of this, they frequently are more “hands on” than other children.  The young ones I work with will frequently cuddle into me, hug me, or ask for deep hugs.  These are sometimes signs of affection but usually they are trying to meet sensory needs.  Whatever it is, I just truly enjoy working with them…

The important ones arrived on a Monday.  On the previous Friday, the offices were cleaned.  The entry and hall ways were tidied.  And flowers started appearing in the lobby.  The plants were well groomed.  Starting on the Monday, the staff tended to dress a little nicer.  There was a bit of a buzz around the place.  There were lovely lunches in the canteen for the important ones.  The rest of us were offered left overs.  Then, on the Friday to celebrate the important ones’ departure, there was cake.  And not just one cake, but at least 2 cakes.  And pictures of as many “good looking” clients as possible with the cake.  Some were even allowed to take a taste of it (if they used a spoon).  Then the music began.  Celebratory “cheesy” music.  The important ones were happy.  After eating a bit, I was pulled aside for a photo opp with some management.  They wanted to thank me officially for the AAC course that I did a while back.  I was very touched that there was an official thank you with a token of appreciation.  In the 2 1/2 years that I have been in this job, this is the most appreciated I felt.  Now, I just wonder where that photo is going to show up…

Anyway, some clients do not develop functional speech for a variety of reasons and some clients lose functional speech.  Some of my clients have motor speech disorders, muscle weakness, general developmental delays that inhibit their speech development.  When clients have motor speech disorders, their neurology is different.  Either the brain doesn’t make the right message to send to the muscles, sends the wrong message even though the correct one has been created, or the muscles “misfire.”  A motor speech disorder can also be caused by increased or decrease muscle tone (resulting in decreases strength and/or coordination of the muscles).

When a client does not have a functional communication system, a lot of factors need to be considered because AAC systems often get abandoned.  I don’t know how many times I have walked into a room where a client was but the device was not accessible.  Many communication partners just don’t buy into AAC.  I have had many people tell me, “but I understand him” or “he doesn’t have much to say anyway.”  How do you know that?  We don’t really truly know what/how much someone else wants to communicate or what they want to talk about until they tell  us.  We are not mind readers, no matter how well we know the person.

In my current job, many of my colleagues have limited experience with AAC and I see them making some of the mistakes that I made when I was a younger clinician.  Therefore, I decided to develop a one-day seminar on the topic.  My employer wasn’t thrilled with the idea but I was insistent and the training department head loved the idea.  So, someone in the training department did the organizing and I worked out the content.  We had originally had the goal of 30-40 people, with 25 people being from outside of our organization.  46 ended up attending, with most of them paying a nominal fee to attend!  It was a great day and I got really good feedback from it.  I tried to give practical suggestions and the other therapists really seemed to appreciate that.  It made me feel good as well.  Most of my department didn’t attend but there are others who want the information.  And more importantly, a voice outside the predominate one here got heard.  Some information on other ways of doing things got shared.

The dilemma is that if we say no, the clients may not get what we need.  If we keep saying yes, the caseloads and workloads won’t decrease.  However, if we keep saying yes, the clients don’t get the adequate level of service/care because we are only human and can only do so much.  Yet, the guilt seems to make us say OK.

In my current department, there are many people who complain about their workloads.  They say that they have too much to do and try to get other people to add to their own workloads.  If the therapist says no, they are labeled as lazy.  So, there is even more incentive to to say yes and enable the “we can do it all” mentality.  I have recently learned to say no and try to set limits.  I have realized that I enjoy having a life outside of work.  I do better for my clients.  Yes, it means that some clients in the organization get nothing, but I would rather give a good service to some than a half way service to many.

Part of my caseload has become working with children at a school for children with autism.  The school has approval but there is only one teacher (and she will go on maternity leave soon) hired and two therapists assigned.  We can’t get a psychologist or social worker.  We haven’t been able to get qualified teachers or a principal.  The parents are frustrated because the school was supposed to be open this month. Yet, you can’t open a school without staff, can you?

We went out to the building today to get ideas on how the space should be used and how the classrooms should be set up.  We moved existing furniture around and luckily the three of us who went out all agreed on the basic plans.  It was a great brainstorming session.  We will have to go out again soon, though, to see what existing furniture can be used and what needs to be thrown away.   The process of this is very exciting.  However, it can be a bit daunting walking around a dark, damp school that has water damage, is dusty, and has trees growing into a couple of the rooms!  That’s right, I said trees growing inside.  Some of the windows are a bit propped open and the trees have grown into them.  I know the building will be wonderful and it is great to have a blank slate to work with (more or less), but trees inside?  We’ll get there.  I know we can…

What I can’t get over, however, is particular attitudes.  I have found that many people have ideas or preconceptions about what my students should or shouldn’t be able to do.  Many professionals ask what the child’s cognitive level is before even meeting the student.  They then determine their expectations based on the tested cognitive level.  However, it is well known that cognitive testing isn’t the end all, be all.  Often in certain populations it just plain isn’t accurate .  For example, for children with certain types of language difficulties or speech difficulties (especially for children with autism), they will test lower because the tests are language based.  Even the non-language subtests have a language component.  If you have severe difficulty understanding language, you will test lower.  Therefore, I work with each child based on their abilities and difficulties, not their test scores.

I currently work in a couple of different special schools and hope to be working in a third (a school for children with autism) soon.  The two schools are very difficult for me to work in.  It isn’t the physical space, it is the “feel” of the place.  People are stressed out and don’t have the training or materials that they need.  They don’t have the resources because the powers higher up had the preconceptions that because they have severe/profound cognitive impairments, they don’t need certain materials.  Even though they are legally entitled to an education, many people working with them think the children really need to be cared for.  The people responsible for their education don’t buy into the idea that they can be educated.  That attitude I find infuriating.  Now, I am not saying that we should have unrealistic expectations but if you have no expectations, then the children won’t do anything.  If the adults in their lives anticipate every need, why do they need to communicate?

Currently, the focus in on integration.  However, nobody seems to really know what that means.  Some people think it means the child is physically in the room but not participating in any activities.  Some people think it means that the child is in the general education classroom but must participate either socially or academically (or both).  Others think that it means that the child can keep up academically.  Yet others think that it means that the child is accepted as an individual, has friends, and is part of the community.  The problem is, how do you measure these things?  How do you measure the success of integration?  Do you measure whether or not parent/educator/student goals are met?  Do you measure how close to grade level they are functioning?  Do you measure it by finding out how many children think of the child with a disability as a friend (children with disabilities often over-generalize the term friend)?  Do you wait and see if the child (then adult) can hold a job?

To complicate the matter, parents and teachers frequently have different goals for the child’s education.  Teachers often expect/want the children to function at grade level.  The parents want the children to be happy and have friends.  Some educators also want the children to be able to hold a job and function as independently as possible (whatever that means).

Another complication to integration is funding and this idea of what is or isn’t restrictive.  Children with special needs have special needs and require an individualized curriculum.  I know that may sound obvious but I don’t know how many times I have heard general education teachers comment that the child can’t do work at grade level and therefore shouldn’t be in their class.  That is what special classes are for they say.  However, with the proper supports (which seem to vary per school and child and teacher), a child can be on a different curriculum than their peers and still be included as part of the class.  If the principal has an acceptance of all children and the teacher is accepting, then the other children will be as well.  Now don’t get me wrong, the government needs to contribute funding.  Integration generally doesn’t work unless there is a team of people supporting a child. That takes money.  Children with special needs may also need specialized computer programs or chairs or tables, etc.  These take money.  It also takes time to adapt the curriculum and make educational materials.  And time can translate into money.

Even with all the challenges (which I have only touched the surface of), integration can work.  It is amazing when children accept others no matter what their abilities are.  I am quite happy when I hear children say that everyone has different skills.  I am also happy and touched when I hear children talk about children who even 10 years ago may have been stigmatized but instead the children say how much they like the child with a disability.  On a recent school visit, I heard one child tell a teacher that the child with Down Syndrome was their favorite classmate.  That is what integration should be…

Recently, I had to refer another child for a video swallow study.   He has a degenerative disorder and his feeding skills have decreased dramatically in the last year.  Because it can take him 20 minutes to eat a few spoonfuls of food, I was quite nervous for this video swallow study since it was at the same place.  However, the test was done and the client did well.  He didn’t aspirate at all (which surprised me) and no food or liquid was near the vocal folds either.  There was residue (food/liquid in the mouth or pharynx after a swallow) but it was only mild to moderate.  So, this client is doing better than I thought and can continue eating orally for a while.  I am so relieved because I really thought that there was a possibility of emergency admittance again.

So, part of my job is to do bedside assessments on clients.  During a bedside assessment, I watch the client eat and drink as they normally would.  I look for signs of aspiration such as their face getting pale, eyes reddening, eyes watering, wet vocalizations, wet coughing while eating/drinking or shortly thereafter.  Sometimes have other signs of distress as well.  So, I observe them and then put my fingers on the clients larynx and below the client’s chin so that I can feel the laryngeal elevation of the swallow as well as feel tongue base movement.  I then assess the client’s risk of aspiration (food/liquid going into the airway).

If I think a client is having difficulty swallowing and/or has a history of pneumonia, I will sometimes refer for a video swallow study.  A video swallow study is an xray test where we can watch the person chew and swallow food/liquids.  It is the only definative way to see if a client is aspirating.  It also shows the amount of food/liqud that is left in the mouth/pharynx after the client has swallowed.  This is important because if food is in the pharynx after swallowing, the client is at risk of aspirating after the swallow.