Parents have Special Needs, too!

150812161635-stressed-parents-stock-super-teaseIn my 25+ year career as an SLP, I have worked with a wide variety of students with a wide variety of special needs:  vision and hearing impairments, physical disabilities, cognitive disabilities, degenerative diseases, autism, and lots of different syndromes.  I’ve also gotten to know many of their parents, and find that they are as varied as the children and their disabilities.  In my last post, I wrote about how we can often learn and grow as professionals when pushed by challenging (aka “difficult”) parents.  Granted, that can sometimes take a tremendous amount of self-control and willingness to embrace other points of view, even when expressed in a less than pleasant (aka “hostile”) manner.  And that brings us to today’s musings:  why are some parents so challenging? Why can’t they just be nice and cooperative and supportive?  Well, when we take a little time to find out what life is like for these children and their parents, the picture becomes a little clearer.

I must say from the outset that I have met many parents who are absolutely wonderful.  They are cheerful, supportive, appreciative — strong advocates for their children, but always in a pleasant, cooperative way that engages all team members and addresses any issues with a positive attitude.  I have been in awe of the way some parents handle what has to be a stress-filled life with amazing grace and fortitude.  I’ll never forget the mother of a young boy who was born with multiple disabilities and who fought multiple medical battles in his young life.  He was in our program for four or five years, so we got to know the family well.  When he passed away, the mother came to school to make sure WE were okay. She went on to start a foundation in her son’s memory that raises money for modifying bedrooms and bathrooms for other parents who have children with severe disabilities, and that foundation is still going nearly 20 years later.  Another parent of two sons with autism came to every meeting with a box of donuts and a smile.  “Tell me something good,” she’d say, “and then we’ll get into the rest of it.”  I loved this proactive attitude and found that it made the team look for the good when dealing with her sons.

I’ve also known a number of “challenging” parents, parents who are angry, belligerent, depressed, and otherwise stressed to the max.  Rather than becoming resentful or defensive, let’s look at where they are coming from.

  • Some parents are stressed financially.  Having a child with significant needs can be expensive: diapers, surgeries, medications, adaptive equipment, outside therapies, and nursing services are just some of costs facing these parents, above and beyond the usual food, clothing, toys, and childcare.  But, you are thinking, insurance should pay for many of these expenses.  That brings us to the next stressor.
  • Some parents are stressed by insurance.  Whether private insurance through an employer or a policy funded by Medicare/Medicaid, dealing with insurance companies for even the smallest claims can blow your mind.  As an assistive tech consultant, I’ve been engaged in epic, year-long battles with insurance companies on behalf of my students, and I can tell you that my own life was severely impacted by the struggle.  When parents have to fight insurance for every little thing their child needs, they are in no mood to be denied anything at school.  Constant struggles can put some parents in battle mode all the time, causing them to come off as more aggressive than you might feel is warranted.
  • Some parents are stressed in their relationships.  It is not uncommon for marital issues to arise when dealing with the special needs of a child. Those needs may severely impact time and opportunity for the attention and activities typically shared by couples. The needs of other children in the family may suffer, and that can have far-reaching ramifications.  Friends often disappear and extended family members may be less than understanding, leaving the parents without a social life or safety net of support.
  • Some parents are stressed by employment.  In many cases, both parents of a child with special needs have to work.  It can put a strain on the workplace when parents have to miss work for IEP meetings, doctor appointments, and the child’s illnesses.  Employers may not be tolerant of this, and parents are acutely aware that losing a job means losing a paycheck and insurance, which takes us back to the first two stressors mentioned.   I’ve known couples who have decided that one parent, typically the mother, will give up employment and stay home so she is available 24/7 for the child with disabilities.  Besides taking a hit financially, this can take an emotional toll on the parent who has to give up the rewards and fulfillment of a career.
  • Some parents are stressed by a life that is far different from what they expected.  I’ve known parents for whom medical emergencies are the norm;  one couple had two children with a very rare syndrome that left them virtually locked-in, and each required a nurse to be with them 24/7.  Imagine sharing your home with a succession of strangers, night and day, and living with equipment buzzing and alarms beeping at all hours.  Another family had a child who was so destructive that furniture was bolted to the floor, the TV was hung near the ceiling, and every room was locked.  This was not a house to which one would ever invite guests.  The majority of parents have a lot to learn about their child’s disabilities and all that is involved with navigating the day-to-day needs, as well as planning for the future, but they may not have access to the supports they need to get through this.  Being a new parent can be overwhelming.  Imagine being a new parent AND having to deal with serious medical issues.

I try to keep all of this in mind when dealing with all parents, especially those who come off as “difficult.”  Years ago, I cross-stitched the saying, “Be kind, for everyone you meet is fighting a hard battle.”  This serves as a daily reminder that we never fully know what another person is dealing with, what burdens they are carrying, and how that stress is affecting them.  For a more personal perspective on this topic, I encourage you to read these excellent articles, written by parents of children who have special needs.  They can tell you, far better than I can, what they wished people knew about their lives.

37 Things Special Needs Parents Want You to Know

12 Things You Should Know About Special Needs Parents

Finally, here’s an article about understanding parent concerns and providing supports; but it applies to SLPs and other educators as well:  Understanding the Concerns of Parents of Students with Disabilities.

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