Health Parenting Special Needs

Advice for Parents Beginning the Special Needs Journey

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“Your child has _____.”  These are words no parent ever wants to hear.  It doesn’t matter whether the diagnosis is Autism Spectrum Disorder or cancer; the flood of emotions is intense and raw and sometimes debilitating.

I know because I’ve been through it.  Every painful, nightmarish step toward acceptance.  I’ve been through it all.

When Ewing was diagnosed with having had a stroke in utero the day after his birth — a diagnosis that would carry with it future diagnoses of hemiplegic cerebral palsy, hemiparesis, speech and language difficulties, potential learning disabilities, and possible lifelong epilepsy — I was devastated.  I cried and cried and cried, all day and all night.  I was certain he would perish at any moment and that if he didn’t, I wasn’t equipped to provide him with the care he required.  To say I was a mess is an understatement.  It took years — nearly 3 of his almost 4, to be exact — to fully come to grips with his circumstances, and even then, there are difficult moments when his limitations are apparent and his challenges worrisome.

Each person copes with the news differently.  For some, like me, the first feeling is despair.  For others, it’s fear.  For still others, there is seemingly nothing — no sadness, no depression, no confusion.  Nothing.

Regardless of how you initially feel about your child’s diagnosis, there are some universal stages of acceptance many parents of children diagnosed with special needs go through as well as common steps for getting there with sanity intact.  I present you with just a few pieces of advice regarding the journey that I’ve picked up along the way.

Resist the urge to consult Dr. Google.  As temping as it is to look up and devour every image, video, and piece of information the internet has to provide about your child’s specific condition — and believe me, the temptation is nearly impossible to ignore — I strongly urge you not to fall into this trap.  You will not like what you see, and it’s very possible this practice will only serve to make you feel worse.  A lot worse.  Much like looking your cold symptoms up on WebMD only to leave the site certain you have a terminal illness, looking up your child’s diagnosis can leave you feeling helpless.

Instead, consult only reliable, research-based sources of information at first — things like hospital pamphlets, research and medical-based studies, and informational packets from your child’s pediatrician or specialist.  Eventually, once you learn more and have had time to absorb what you’ve been told about your child, you can browse the open internet for personal anecdotes and imagery related to the disorder or disease.  Until you’ve had sufficient time to ponder and come to terms with the diagnosis, however, I suggest sticking to doctor, hospital, and university-sanctioned material to satisfy your need for knowledge.

Find a strong support network.  I can’t emphasize this one enough.  I began the journey alone, so afraid of the horrors I might encounter should I speak with others in my situation that I purposely cut myself off from any help I might have benefited from.  I ignored the pediatric neurologist’s suggestion that I contact the parents of another patient with a similar diagnosis and actively avoided looking for both in-person and online groups of other parents whose children had suffered a stroke.

In retrospect, by delaying contact with people who understood, I also delayed the healing process.  I have since connected with parents of stroke survivors via Facebook, and I can’t explain how helpful it is to be able to interact with others who “get it.”  Start by searching for support groups online (careful not to fall into the Dr.Google trap), through your local hospital or child’s specialists, or through a counselor or therapist.  You won’t regret building relationships with people in similar circumstances.

Allow yourself to feel the icky emotions.  Anger, grief, jealousy, and weakness are just a few of the many emotions I’ve experienced (and still do on occasion).  Don’t ignore these feelings, as troublesome and misguided as they may seem.

I detested people whom I decided did not deserve healthy children — people who smoked during pregnancy, did not receive adequate prenatal care, took for granted their children’s health.  I mourned the loss of the child I thought I would birth — the child with the potential to be a star athlete, to discover the cure for cancer, to enjoy normal peer relationships and adolescent experiences.  I was jealous of people who got to have their babies and bask in the joy that comes with spending the first night or two together in the same hospital room without worry, who didn’t have the pressure of administering life-sustaining anti-seizure medication every evening, and who didn’t have to spend hours at the pediatric physical, occupational, and speech therapists’ office every week.  I felt incapable of handling one more conversation with a specialist or one more night of racing thoughts filled with what-ifs and anguish.

What I’ve learned is that these sentiments are perfectly normal, and that by allowing yourself to indulge in and work through them privately or with a friend, family member, or professional, you can prevent them from drowning or owning you.  Confront them, deal with them, and move on.  You’ll be a happier and healthier person for having done so.

Ditch the guilt.  This one’s easier said than done, but it’s crucial to a person’s well being.  For months (and maybe even years), I was certain my decision to have regular coffee in the last couple weeks of my pregnancy, my indulgence in a couple glasses of wine after the first trimester, my acceptance of the doctor’s pain pill prescription for my debilitating back pain midway through my son’s gestation, and my determination to work right up until labor despite my repeated pre-term contractions and the doctors’ stoppage of them and dismissal of my concerns were responsible for my son’s stroke.  No amount of reassurance from the neonatologists that those things had absolutely nothing to do with what wound up being a simple fluke within a week of my son’s birth assuaged my shame and sense of personal responsibility.

Truth is, in most situations, there is nothing we as parents could have done differently (especially when it comes to foretelling the future and potentially changing a decision we made) to thwart our children’s conditions.  While it’s perfectly natural to feel guilty, it’s also necessary to realize that dwelling on that guilt is a futile use of time.  Though the guilt still sometimes rears its ugly mug, for the most part, I’ve been successful at telling it to take a hike, and I feel so much better because of it.

Don’t write your child’s story for him or her.  This is a little piece of advice my mother gave me in the hospital after the doctors had delivered my son’s diagnosis, and it is the best, most useful suggestion anyone’s bestowed upon me yet.  It is easy to take what the doctors tell you about what your child will and will not be able to do and which treatments will or will not work and assume them as the blueprints for your child’s journey, but it’s important to remember that doctors are simply practitioners of medicine.  They are not divine, omniscient beings capable of accurately foreseeing the future.  They are knowledgeable, experienced professionals who use their best judgment and expertise to make medical decisions and predictions about the efficacy of each, and that’s it.

We are a species desperate for answers to the unknown and prone to comparisons.  Sometimes, however, there are no answers to our questions, nor is the outcome of a disability or treatment for one person identical to that of another.  Our children are amazingly resilient, unique individuals each capable of feats miraculous and disparate from those of others.  Don’t presume to know what your child’s future holds.  It’s not fair to him or her, nor is it fair to you.  Instead, let your child write his or her own story.  It’s a story only he or she is capable of authoring, and it is an amazing one indeed.

I would be lying to you if I said the special needs journey is an easy one, but I can tell you with 100% honesty that it is a manageable one and one that you will learn to master and even embrace.  Rest assured that what you’re feeling is normal, and know that you are not alone.  There is an entire community of parents out there who understand and empathize with your situation, and though this is not a club you had ever hoped to join, we welcome you with open arms.

What other pieces of advice do you have for parents just beginning the special needs journey?