The Strain Of Parenting A Child With Special Needs

It may seem pretty obvious that parenting a child with special needs requires more – more time, more patience…just more.  And you’d be right – it does.  Yet as is the case with many children and teens whose special needs are hidden, so too are the realities facing parents when this exceptional caregiving becomes front and center.  Hidden from the outside world perhaps, but not from their own view.

Late last night, I spent time speaking with a parent who shared with me that their marriage was ending.  Weeks, months, and years of focus on their child tore the fabric of their marriage beyond possible repair.  The attention their child needed was unrelenting and their attempts to achieve any sense of normalcy (a word I dislike) was intensified by extended family and friends not “getting it.”  Battling for their child became battling for themselves as well.

While I’d like to say this story is rare, it’s not.  Time and time again I’ve heard from parents who thought their partnership was strong – and indeed it likely was before a child whose needs overtook all else became the central role in their lives.  They may have seen the cracks starting to develop but refused – for good reason – to believe that they couldn’t withstand the strain.  Yet when faced with the harsh realities, even the strongest husband and wife can sometimes no longer cope…with their denial, remorse, fear, guilt, uncertainty, feelings of helplessness, lost dreams, and even those thoughts that they dare never say.  Why me and why us.

Financial pressures to pay for services and supports their child needs – often hundreds and thousands of dollars a month.  The inability to have “time alone” – securing a babysitter or caregiver who understands autism is impossible.  Few if any day trips or extended vacations with friends or family – if they do happen, it’s not without much planning, tension, and often times issues.  Family life becomes difficult – from therapists in the home to the child’s behavioral issues from morning to night.  Changes in careers – one parent can no longer work outside of the home because of the child’s needs yet the bills continue to mount.   Work/life stressors – a work deadline conflicts with an urgent call from school.  Communications issues – who has time to talk anymore.  Lack of intimacy – too tired.  Shifting priorities.  Plans ended.  The partnership crumbles, sometimes beyond fixing.  No surprise to the millions of parents struggling to hold everything together.

I’ve said it before and will say it again … parenting a child with special needs is herculean parenting.  It stresses and strains every area of life and the impact is often far-reaching and beyond the view of many.  Yet the toll is very real and intensifies when a marriage ends.  And because very often one of the parents becomes the warrior solely focused on the child (because they *have* to be), they often lose themselves in the process.  And by losing themselves, the “us” is often lost as well.  Not by design, but rather by situation.

So my message, while it may be only words, is this – the role every parent of a child with special needs plays is beyond description and definition.  It’s parent/coach/guide/role model/teacher/protector/therapist/case manager/facilitator/advocate/strategist…and a host of other titles all in one.  Your efforts, sacrifices, and yes, pain is for one reason – to help your child achieve success and independence.  And while there may be painful losses in the process, don’t lose sight of all you have done and are continuing to do to help your child move ahead.  For while your struggles may be hidden, your rewards most certainly are not.

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Independence…A Day Or A Life

July 4th…a day commemorating our independence.  Most of us never think about our independence because we typically just make our own choices and do as we please.  We take for granted that we can go here and there, do this and that … all at will.

But if you think about the definition of independence as it applies to children with autism and other diagnoses  – not relying on another or others for aid or support – the word suddenly takes on a whole new meaning.   And while independence is defined differently for every child, the process of working toward this goal remains the same.  It’s called hard work, never saying quit, and keeping your eyes firmly on the prize.

Not every child will reach the plateau of total independence (true for children without a diagnosis as well).  But, do you know how many children have been – and still are – thought to lack the ability to *be* independent at any level because of an obstacle and barrier (i.e. their diagnosis) that others believe precludes achieving this goal?  And do you know how many have proven these people wrong?

For many, independence is celebrated as a day with family barbeques and fireworks.  For many others, it’s a life goal that often starts in childhood, continuing through adolescence and right into young adulthood.  It’s what parents “in the trenches” are fighting for every day, refusing to relent to the labels or naysayers who seem to know what the future holds.  They don’t.

For the millions of children (and their parents) who are striving to achieve the milestone of independence, think of tomorrow as a celebration of you and everything you’re working so hard to achieve.  Nothing worth achieving comes without true effort and you continuously show the rest of the world what this is truly all about.