Special Needs Careers

A couple of weeks ago, I got an email from a young blog follower named Rebecca.  Rebecca is interested in pursuing a career working with individuals with special needs and she asked me this thought-provoking question:

My question is which part of Josie's "support system" if you will, has the greatest impact on her?

First of all, can we take a moment to acknowledge how smart Rebecca is for considering her career options at such a young age?!  When I was her age and my parents dropped me off at college and I was expected to declare a major, I had no clue what I wanted to do with my life, nor did I have any concept of what most professions entailed!  

That savvy Rebecca takes it one step further and researches her options!  Brilliant!  It was such an impressive inquiry that I decided to turn it into a blog post.  I tell you what, Rebecca, this was an overwhelming assignment but one that I'm very enthused to tackle.  Josie, in addition to having Down syndrome, has had some significant health issues to face which has increased our interactions in the medical field  more than some other parents of children with Down syndrome.  For example, perhaps some parents have never had a meeting with a hospital social worker where as I have cried and begged and questioned several hospital social workers, thus, this component of our support system is significant.  But I've tried to keep this list as concise as possible (For example, in addition to physical therapist, I don't also list physical therapist with access to a LiteGait, an orthotist, and an orthopedic physician, etc...) but if you have additional questions, you know where to find me.  

Also, let me provide the caveat that I am only referencing my own experience enhanced by a brief Google search.  This is not guaranteed to be comprehensive and it is subject to flaws.  Should you have further knowledge/insight for Rebecca, please leave it in the comments section. On to the list:

Josie and the incredibly dedicated PT, Ms. Shannon

Physical Therapist (PT) - Focuses on gross motor (bigger) movements that use large muscles in the arms, legs, torso, and feet.  A PT works on strength, range of motion, and endurance.  Josie has been aided by a physical therapist in learning to sit up, crawl, pull up,walk, run, climb, jump, etc...

Josie and another one of her favorite PT's, Katie

Occupational Therapist (OT) - Fouses on fine motor (smaller) movements that use small muscles of the fingers, toes, wrists, lips, and tongue.  An occupational therapist will teach basic tasks such as bathing, getting dressed, brushing teeth, toileting, and self-feeding.  Right now, Josie's OT sessions generally focus on self-dressing and handwriting skills.

Josie and her beloved OT, Ms. Barb

Speech Therapist/Speech and Language Pathologist (SLP) - Focuses on expressive and receptive communication skills, articulation, fluency/stuttering, and feeding/swallowing issues.  Currently, Josie's speech therapy sessions center around developing conversational speech and correcting her pronoun usage.

Developmental Teacher/Therapist - Consults with parents and professionals on global development which includes cognitive function, language acquisition, fine/gross motor skills, and behavior.  A developmental teacher/therapist has an expert knowledge of age appropriate milestones and can provide guidance on overcoming challenges.  Josie's developmental therapy sessions were play-based and her developmental teacher would offer suggestions for how I could help Josie achieve milestones through play.  She also offered a lot of helpful advice about what tools to use (music/basic "old fashioned" toys like blocks and dolls) and what to avoid (TV/video games) to provide an enriching environment that was conducive to learning.

Special Education/Early Childhood Special Education (ECSE) Teacher - Is familiar with a wide range of special needs and educates children with various developmental disabilities.  A SpEd teacher will adapt curriculum to each child's abilities and needs.  In addition to academic goals, this teacher will work on behavioral and social goals as well.  Develops IEP (Individualized Education Plan) with other professionals involved in a child's education (therapists, social workers, administrators, psychologists) to create goals catered to the child's individual needs.  The SpEd teacher updates parents and coaches them on how to promote learning within the home. 

My mother is a Special Education teacher and I grew up absolutely amazed by her extensive knowledge of various disabilities as well as customized educational approaches designed to help each student maximize his/her learning experience.  It's not an easy career path but it's rewarding and it's never boring!

Case Manager - This is a broad term an the career specifics depend on the field/position but this person coordinates care.  In a school setting, the case manager facilitates communication between all professionals involved in the student's care.  Case managers schedule IEP meetings, maintain timelines, collect, analyze, and report data.  Primary areas of focus for disability case management are facilitating communication between stakeholders, advocating on the disabled client's behalf, and assessing the client's needs.  The case manager can then identity appropriate interventions that promote a maximum level of functioning for clients.    

Case Managers have the potential to be very influential in a client's care.  The best case managers are invested, proactive, and offer comprehensive and current information on the network of resources that are available to a client.  

Aunt Leanne visiting baby Josie in the hospital

Hospital Social Worker - Provides patient-family support in a hospital setting.  Coordinates physician and patient-family conferences.  Offers crisis intervention; Refers patients to appropriate hospital and community resources.

This one was important for us.  You'd think since we adopted Josie, that we would have been familiar with the resources available to her.  Boy were we naive!  Because Josie spent so much time hospitalized between her cardiac condition and her chronic lung disease, the hospital social workers met with us and provided all sorts of information about medical specialists within the health system that could help Josie as well as offering information about state-specific programs available to help individuals with disabilities.  Beyond that, they got busy behind the scenes setting up doctors appointments and enrolling Josie in these programs.  The knowledge and assistance they offered was invaluable.  They were also incredible at providing emotional support during some of the dark days in the hospital.  

Developmental Pediatrician - A developmental disabilities specialist who can identity developmental needs and provide treatment to promote optimum development over time.  This is a physician who combines information from multiple sources to provide comprehensive follow-up to address a child's complex needs.

Josie has had the good fortune of being seen by two phenomenal developmental pediatricians who offer extensive knowledge on various developmental disabilities as well as the appropriate interventions to provide the best care for each child.  While each child is unique, there are certain medical issues that are more likely to affect children with Down syndrome and it's the developmental pediatrician's job to identify and screen for these issues and recommend the appropriate course of treatment.  

Josie waiting to be seen at the Down Syndrome Clinic

Behavioral Therapist - Applied Behavioral Analysis (ABA) is the application of behavioral principles to every day situations that will, over time, increase or decrease targeted behaviors.  ABA has been used to help individuals acquire many different skills, such as language skills, self-help skills and play skills.  In addition, these principles can help decrease maladaptive behaviors such as aggression, self-stimulatory behaviors, and self injury. (Source)

This one might be a personal favorite because the impact this has had on our lives is HUGE and I cannot say enough positive things about it.  We pursued behavioral therapy to get Josie off the g-tube when the SLP and OT guided SOS method did not work (read more about that HERE and HERE).  But behavioral therapy can be used to increase positive and decrease negative behaviors in so many scenarios.  We use the strategies we learned every day on all of our children and it makes life so much easier!

Aunt Leanne receiving her medal at the Special Olympics

Non-Profit Employee - This one occurred to me after I made the aforementioned list because I realized that the other professions listed seemed to either involved the medical field or the education field.  But what if neither one is your calling?  Then you do what I did and you get a business, social work, or public administration degree and you go to work for a public or non-profit agency that benefits individuals with special needs.  Prior to becoming a stay-at-home-mom, I worked in financial development for several non-profits doing fundraising.  If soliciting personal and corporate sponsorship, organizing committees and planning events or grant writing do not sound appealing, you can pursue work on the programmatic end of the field.  This involves identifying needs and developing and implementing programs to address those needs. Some agencies to consider are Special Olympics, Easter Seals, and GiGi's Playhouse.  This is just a small sampling from many, many other worthy agencies that benefit individuals with special needs.

Rebecca, regarding which particular component of Josie's support system has been the most influential, that's impossible to answer.  Its a tightly woven network of resources that work together to help Josie achieve her maximum potential.  The best advice I can give is to review your options, research it further, and maybe even do some interviews or job-shadowing with some professionals and see what appeals to you the most.  One thing is for sure: Josie and all other individuals with special needs are fortunate to have bright young people like you who are pursuing careers designed to help enhance their lives.  Thank you!