Year: 2017

Typically when a child is born into a family, the proud parents of this newborn child are beyond words. Parents often idealize in their minds what it would be like to raise that child, nurture and coddle with their child. Then the obvious happens: the child either conforms to the parents expectations or doesn’t. Most children have an innate desire to love and long for their parent’s warmth, affection, and attention.

Life can throw a curve ball when that expectation becomes anything different than desired or needed.  The child that has been born first, becomes the prized possession. Everyone soon quickly forgets how normalcy takes over. The child coos on time, sits, rolls over, and can even begin to take their first step soon after their arrival in the world. This child faces no difficulty in being accepted. If anything, this child is sought after by family members, family friends, and school personnel.

But what happened to the child that isn’t the favorite because that child is unimaginably “different”, “the exception to the norm”, and most devastatingly “atypical”.  From the perspective of the family, that child is the one that captures all attention: positive or negative. That child has greater needs that far exceed any imagined by the family that rushes to judgment. Why does this child get to experience the abundance of attention, affection, and adoration?

In almost all households with children who have special-needs, autism, developmental disabilities or chronic illnesses, the parents’ attention understandably is focused on the child’s medical, behavioral and therapeutic needs. Hours are spent on the phone making appointments, finding the best doctor or therapist, or fighting with insurance companies for proper coverage.

Lost in all of this energy, worry, confusion, focus, exhaustion, single-mindedness and devotion, is the typical sibling. The brother or sister who is often left to the side, missing out on certain of childhood’s typical memories and experiences. The “missing” or “hidden” siblings.

The typical sibling must “fit into a mold” that society sets as the norm. Just because the typical sibling was born without developmental disabilities, defects in utero, and has the ability and capability to reach his/her milestones on time, does that separate this child out? Does that child grow up in a world that he/she feels misunderstood, looked upon more sensitively, and sometimes in his/her own way feel like the outcast to society? Can that child develop socially and make friends easily, or is there less resilience that child envelopes? Can other siblings that may be going through similar experiences, and are therefore able to fit in typically surround that child? These questions often swirl in the minds of family members, specifically those closest to the children they are raising.

Society dictates the standards that families often feel as a sense of belonging and acceptance.  Hence, their offspring are a product of that deconstructed reality. So, who actually loses out on those same experiences that other families get to enjoy, participate in, and appreciate. Fitting into a mold is often constricting, but in this case it is about redeveloping the mold. Siblings can adapt, and families learn to do the same. Siblings become resilient, sensitive, and carry a greater sense of confidence because of what they grew up living with. Their environment is carefully woven, and their ambition is often set out to educate the world about differences, immorality, and injustice. These siblings even learn to fight down bullies, and become the protectors in society. Overall, despite the adversities they have faced being raised around their atypical sibling, they fare well. If the so-called “mold” is something they learn to tolerate and overcome, then the greatest question of all is how can we as a society accept and reach the same victory?

Below is a Keynote Speech given by Gil Epstein, the 13 year-old typical sibling to his sister with special-needs. Listen as Gil explains in brutally-honest words the experience that is common to the typical-sibling. Let’s break the mold and remember the “special” needs of the “typical” sibling too.

 

 

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Have you ever wondered why you feel compelled to convince others how you feel about your autistic or special-needs child? Shouldn’t you just be allowed to FEEL, THINK, AND ACT? Maybe I can shed light on some of those feelings because I have lived through those tough and indescribable moments-in-time that feel never-ending, days that feel like years, thoughts that tend to shame us, and instinctual actions we took that were truly innocent and inherent.

This blog is not written or intended to bash parents or caregivers that raise special-needs children, but, rather, to give much needed permission for parents to come out of a hidden place and openly and candidly talk about the seemingly unnatural or unaccepted thoughts that you may not like your child and dislike a majority of what your child represents or how your family or relationships changed because of your special-needs child.

For those of you who are married or in a committed relationship, you undoubtedly will agree with me that it is difficult and challenging for two people to forge a strong relationship between one another – given a typical family environment. Both partners need to demonstrate the fortitude of early parenting skills and be secure with their attachment style so they can fully nurture their own creation. It is often challenging to even know where to begin or how to work together in an effective partnership.

When a mom or dad decides to become a parent and raise a child, they knowingly commit to give-up some freedom and some autonomy for the purpose of bringing a new life into the world. They are generally more than happy to sacrifice themselves to benefit their child. Part of that sacrifice comes with the expectation that as a baby, the child will need and take resources from the parents, and as the child matures into adulthood, that need lessens and lessens until the child is a self-sufficient adult.

But what happens now that the child doesn’t develop typically? What happens when the child does not or can not become independent?  What happens to parents of special-needs children when their willing sacrifices are never-ending and never-minimizing?

Parenting a child with special-needs requires parents to transform the unimaginable into reality; blurred and unmet hopes, dreams, and expectations into rediscovered and yet-to-be disccovered futures.

Sometimes, we just want to pretend that the life we have been dealt is just a bad dream that we no longer have to take from and live on a daily basis. Simply, it is typical for special-needs parents, to feel angry, jealous or envious of the typical life that other parents and families  around us are living. What would it be like to live the blissful and happy experience of raising a typical child? Is that expectation and hope reachable? Can we ever go back in time and experience the contentment of being happy-go-lucky?

The answers lie when we transform ourselves from feeling the need to convince to feeling the tranquility of acceptance. How do we stop feeling compelled to convince others that our life isn’t too “special” and accept that our life is typical, yet different.

The meaning of convince is to move by argument or evidence to belief, agreement, consent, or a course of action or persuade or cajole. I often ask myself if it is necessarily to try and persuade our family and dear friends to accept and know how hard our everyday lives are, or is it enough to know that for ourselves, and to transition from the mode of convincing others by arguing and getting upset, to just accepting our lot regardless of how others feel or how our lives compare to others around us.

The meaning of acceptance is the act of receiving something offered, the act of assenting or believing. To truly accept that we do not and will not live a “typical” life is life-chainging. When we can look at another family whose children are speaking clearly, playing appropriately, potty-trained or can make eye contact without any issues, we will have reached the magical plateau and place of acceptance. For me, that place seems like the place Dorothy visited in the Wizard of Oz – a fantastical place of joy, happiness and tranquility. It may not be a place that is easy to travel to, a place where we can use our GPS to drive, or a place that we can know when we first arrive, but it is a place that is definitely attainable and reachable.

I have strived for the past 15 years to find acceptance of my new identity: being the mother of a child with a developmental disability. I’ve grown tired of trying to shield myself and my loved-ones from the endless and tiring plight of the therapies, doctor visits, hospitals, IEP meetings, teachers, etc. I, like you, have travelled through an unexpected journey that is inescapable –  and no one can tell us otherwise. We are traveling along an untrammeled path – unique to each of us and our child. Have we reached our destiny? NO! We can work hard and be open to traveling different roads and paths to Discovery our true Destiny.

We will always endure that burden of caring for our special-needs child. And yes, it is a burden regardless how difficult it is to acknowledge that as a mom and parent. The trials and tribulations we have experience have made us wiser and stronger. We are resilient above all others, and are stronger than we ever expected. Our relationships, marriages and families do not need to crumble and succumb to the stress and challenges. We are strong! Strong to stay committed. Strong to be the parent of a child with special-needs. We just have to clear away the cobwebs and dust ourselves off. We are stronger than we thought, and so are our children with special needs and their typical siblings. After all, we created our children and they have our DNA. We are all blessed differently. However, we all have one gift that we often don’t even realize we have. Its called ACCEPTANCE.

If you are the mom, dad, sibling or family member of a child with special-needs, autism, a developmental disability or a chronic medical condition, Eric and Erica from Discovering Destinies, Inc. are ready and able to help you deal with the stress, cope with the trauma or just listen to your frustrations. Erica is a Florida Registered Marriage and Family Therapist Intern License # IMT2785 and the mother of a child with a developmental disability and chronic medical condition. Eric is a Florida licensed attorney, Florida Supreme Court Certified Family Law Mediator, and a Life/Relationship/Special-Needs Coach.

Feel free to call or email us for more information about our services. We are ready to  assist you.  We can be reached at 561-475-5800, our Facebook page is http://www.facebook.com/discoveringdestinies and our website is https://discoveringdestinies.com.

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