Special Needs Parenting: Does it get easier?

Special Needs Parent

Last week in the Friendship Circle blog, Jennifer wrote about the importance of developing self-confidence as a parent of a child with special needs.   Part of that confidence comes from daily routines and structure at home and school, and part of it comes from following evidence-based practices.   This has certainly been true for my family, too.   Today I am responding to Jennifer’s conclusion: that parenting a child with special needs will become easier over time.

I’m sure that some parents of children with special needs discover that their parenting challenges become easier over the years.  Others, such as myself, face new challenges with each passing year.

I can’t promise anyone new to this journey that it will be less rocky next month, next year or even 10 years from now.  I can’t promise that the experience will make you or your child a better person, either.

Here’s why:

1. You may not be seeing the whole picture right now.

A friend of mine also has a son with autism.  She actively pursued his therapies and saw her son make excellent progress in relationship skills, social skills and speech within a few years.  But none of the medical specialists had ever told her that her son actually had a dual diagnosis of autism and cerebral palsy – until her son was 6 years old.  Then he was diagnosed with a hearing impairment.  Over the years, more diagnoses were added as his health problems were sorted out.

2. Developmental and educational issues are dynamic, not static.

In my son’s case, his primary symptom as a toddler was severe anxiety, with impaired sensory processing as a secondary symptom.  When the anxiety became manageable, there were attention issues, so we worked on self-regulation exercises, gymnastics lessons and visual tracking.  When he was able to pay attention, his cognitive ability became the focus of his therapy.  Now that we have found some effective learning tools for him, we are working on memory and preventing regression.  But he’s spent so much time working on these areas that he has fallen far behind his classmates, who have been making consistent developmental progress all along.

3. New medical problems often arise in adolescence

For children with heart conditions or brain injury, health complications may worsen during these years.  Adolescents with autism have an increased risk for seizures, catatonia and mood disorders.  Because of the nature of autism, mood disorders may be difficult to recognize until a person starts injuring himself or expressing suicidal thoughts.  This is of special concern to me, since my family has a history of suicide and attempted suicide.

4. Planning for adulthood begins in childhood

There is no clear path for seeking housing, employment and personal fulfillment for our children with special needs when they reach adulthood.  Parents need renewed energy and creativity as we advocate for our adult children.  In her recent Washington Post article, Susan Senator writes, “It has always been up to my husband and me.  I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked.”

5. Moral support is not guaranteed

Along the way, I’ve had some hard lessons about the difference between conditional and unconditional love.  I don’t know how to fix friendships and family relationships that exclude or hurt my son.  That will not become easier for me.

I am fond of saying that it takes a village to raise a typical child, but it takes an army to raise a child with special needs.  This is why the Friendship Circle is so vital to my family life.  Not only are the volunteers, classes and programs beneficial to my children, but even hanging out in the parent lounge has been a great education for me.  Are you looking for a terrific optometrist who has experience with children with disabilities?  I’ve got his number right here.  A neurologist?  A dentist?  A gymnastics coach?  My latest sensory integration tricks?  With the support of my son’s army, I have been able to research ways to help my son — and the areas in which he needs help have changed from month to month.  Adaptability and multi-tasking are second nature to me now, yet I’m always just starting to learn about a new area.

Even on a parenting journey that’s muddy, uphill all the way, with a sheer cliff on one side, there is still the choice to discern joy or misery in it.  I have cherished every day of my son’s childhood so far, because I know it’s a luxury simply to be with him.

A beautiful DayOne day in early December, we were walking to school in the rain, huddled under our umbrella.  The morning light was misty and gray, and our street was exceptionally quiet, as if we had the whole world to ourselves.

I exclaimed, “What a beautiful day!  I love this weather.”

Smiling, he answered, “Yes.  Me, too.”

What do you think?  Has your experience of parenting a child with special needs become easier for you?

 

Karen
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  • http://www.TheTangoCommunity.com Katherine Carol

    As a parent of an amazing daughter now 28 years old and experiencing cerebral palsy, I have found being a special needs mother is more about running a marathon rather than running a sprint. 
    Initially, upon her diagnosis I sprinted to therapy appointments, raced to get her into the best school and learned everything I could about our challenges ahead.  And, it paid off.  She graduated outstanding senior from her high school–the first one who had ever used an augmentative communication device and a wheelchair.  She, in fact, had been the first person in most of her schools to attend regular ed classes using those devices in the school’s history.  We were pioneers.

    We had the most amazing transition plan.  Teacher’s dedicated hours and hours to helping us plan her move into adulthood.  We used extended school year dollars to fund support from summer jobs (which I highly recommend) and upon graduation, her plan fell apart.  Not because of us, but because of waiting lists and staff turnover. 
    Suddenly, she was home all day.  The race had ended and a new one began.  The race to find new resources, create new relationships in a system where entitlements don’t really exist.  Eligibility rules the day in the adult world.  It is much more complex that those dreamy days of school…I know hard to believe those were the easy days.  I actually had to fund raise for each piece of equipment for the first 11 years before she became eligible for Medicaid.  Our insurance would not cover anything related to her disability.
    The good news, is I got in shape from all my activities.  I learned how to connect, find resources, advocate for her.  She owns her own condo–thank you Section 8 and has a small business, traveled the USA and loads of friends.
    The bad news–our system is failing in many states including my own.  Services that were once cutting edge are slipping into the 1960′s while the rest of the world is moving quickly into a high tech 21st Century world.  In a sense, we are experiencing 21st Century segregation as most adults with disabilities still have little or no access to the accepted technology we as non-disabled adults experience.
    My advice–do prosperity planning for your child, not poverty planning.  On their IEP’s and Transition Plan the number one goal should be get your child out of poverty…Medicaid Buy-In is available in many states now.  Small business strategies http://www.griffinhammis.com are available to help people with disabilities work and still maintain their benefits—but it does take effort.
    I am not sure there is a there–there. But, I do know that as parents we need to have plans of our own for our lives.  We are our children’s best teachers.
    Katherine

    • http://www.jennifergreeningbooks.com Jennifer Greening

      There is an upcoming public event hosted by Wayne State University’s Developmental Disabilities Institute that you may be interested in attending.  It takes place on January 13, 2012 from 6-10 p.m. at the Detroit Institute for Arts.  “Possibilities” is a series of videos recently produced by the DDI.  It is a compilation for four stories from girls and women who are experiencing life to the fullest regardless of their disabilities.  Their stories span from childhood to adulthood (4, 20, 31, and 53) giving viewers a glimpse of how each stage of life can be met with competence and potential.  If you are interested in attending contact http://www.ddi.wayne.edu.

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