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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7 thoughts on “The Strain Of Parenting A Child With Special Needs

  1. My marriage also ended in part because of raising a special needs child. However, it was because of his refusal to help and his denial of the severity of the illnesses. Since I was already “doing it alone”, I decided it was healthier to do it alone. Since then my ex has grown closer with all three children. I, too, try to see the positives in life.

    • Your words are echoed by many mothers (although I’m certain this applies to fathers as well); they are already handling the lions share of the issues so opt (although no one wants a marriage to end) to move ahead solo. Yes, the issues intensify in certain ways yet the pressure in other ways may be less. Glad to hear that your ex-husband has developed stronger relationships with the children – this is most important. Thanks for sharing your thoughts.

  2. I have lived that life and now looking back, it should not ruin a family. The message I would like to send it this: you will not fix it. It is what it is. Yes you grieve the child you were expecting as all parents do, but your efforts and devotion will not give you that child. Live for yourself and your family. The special needs child will not notice, believe me. Use respite. Take your others kids to Disney World, don’t throw big birthday parties and expect them to like them. Don’t push, don’t force. Do want needs to be done and nothing more. Live life – you only get one.

    • You are right…it “should not ruin a family” yet the painful reality is that it often does. Using respite is essential — glad you raised that point — yet many cannot locate it. Even well-intentioned family members are often unable to care for a special needs child unless they receive training of some sort. This is particularly true for children with autism as the needs are often, but not always, significant. And spot-on about not throwing big birthday parties…the key point is *to know* your child and to respond accordingly. Thanks for sharing your thoughts.

  3. There are many challenges to successful marriages with respect to parenting; some adapt to special needs and flourish, others do not. I am sorry to hear about the parent in your article; any ending is sad but the end can also be the beginning of something else. I try to look through each negative to find an as yet unknown positive. If you (or they) have not found it yet it only means you haven’t look long enough or in the right places. Good luck.

    • You are absolutely correct…some marriages do indeed flourish yet many others, as I wrote, suffer under the strain. This parent (it is not me) as with many others who have shared their stories with me, demonstrates a strength beyond what many can imagine so with time, my hope is that the positives will emerge. Thanks for sharing your thoughts…

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