The Struggles,Challenges and Joys

-by Naimah Shaw

 

Parenting is perhaps one of the most challenging and difficult endeavors that a person ever takes on, especially in today’s complex and ever-changing world. Few of us enter the sacred journey of parenthood with the tools necessary for success. Instead, we rely heavily on the strategies our parents used to raise us and inevitably experience profound ambiguities towards our own children. Nonetheless, we love our children and will faithfully sacrifice our time, energy and money for their overall safety and physical well-being. Few people realize how demanding it is to be a parent . . . until they become one.

Let’s face it, to parent perfectly is an illusion.  There is no ideal parent and most certainly, no ideal child. More than any other role, parenthood has caused us to second-guess ourselves. We question our competence, our worth, and even our sanity. However, when a mother looks at her infant for the very first time, she will make a vow to protect them from harm, to give her newborn the very best.

Every parent has high hopes and expectations for their kids. But what happens when you are told that your child has physical or other challenges which could possibly alter those expectations and change your own life at home. You face unique challenges most parents never dreamed of or ever thought possible. More than likely your days are filled with circumstances that seek to overwhelm you as you juggle doctors, therapists, hospitals, insurance companies, pharmacies and then there’s the exhaustion and endless worry.  Educating and training our children to be independent and productive members of society is a two decade-long responsibility at the very best. If you are a parent of a child with special needs, you undoubtedly have bigger challenges to overcome. Children with special needs bring much love and joy to the world but they also face unique challenges, as do their parents.

It’s hard to be an adult, difficult to be a parent, even more challenging to be the parent of a child with special needs. Add the fact that the parent must also become the analyst, the interpreter, the problem solver, the cheerleader, the lawyer, the spiritual advisor, companion, advocate and disciplinarian. Take a deep breath.  You are not alone.  About one in four families with children in the U.S. have a special needs child.  Currently there are about 6.6 million special needs children in American public schools, making up approximately 13 percent of the school population. Having a positive attitude helps but having a realistic outlook and admitting your own fears and concerns will make the process easier for you and your little one. Grief will come and it will confuse you because how can something that brings such joy also generate such sadness. Although every special need child is different and every family is unique, there are common threads that link parents together. These include getting appropriate care and promoting acceptance in the extended family, school and community. Let other people into your life to help you.  Our children do require a village to raise them.  It is highly recommended that families who are dealing with the challenges of raising a special needs child begin by doing what they can together, to come to terms with the diagnosis, accept each other’s coping styles and reach out beyond themselves to gain helpful information. Parents will often find themselves overwhelmed by various medical, care giving, and educational responsibilities. Support from family, friends, the community are critical to maintaining a balance in the home.  Handling a special needs child without a doubt can be exhausting and overwhelming.  When facing serious emotional difficulties, it’s always helpful to become acquainted with others by joining a support or advocacy group. It’s been proven that another person’s experience or solutions can be more helpful than any therapist. Whether you are raising a child with various physical, developmental or emotional challenges, the following list of suggestions may be what you need to lighten the load.  It is my hope that it will enrich your parenting experience and provide you with a sense of reassurance and comfort as you seek to identify and capitalize on the encouragement and support from those who have traveled a similar road.

• Be a ‘professional’ parent.  Show up to appointments on time and bring the necessary records.  Call the office when you’re running late or need to cancel. No one is perfect. If you feel exhausted and angry and have accepted that you need help, asking for it is the next step. Recharging your batteries occasionally can also help you be better parent, partner and person.

• Be kind! Be friendly and polite to the medical staff.  Make friends with them, not because you’re trying to manipulate them, but because you need friends.

• Be an expert.  Know everything you can about your child’s condition.  Read journals, scholarly journals and learn all you can. Don’t be afraid to fight for your child.

• Let the doctor be the doctor.  Remember this person has the medical degree, trust your doctor.

• Don’t let your child’s need isolate you. Having a child with medical needs can be lonely and intimidating. Accept help from friends and family. Be honest about what you need. By letting people know how hard your situation is, you’re allowing them entry into your world. Turning to others isn’t a sign of weakness but rather one of strength.

• Enlist other caregivers.  Parents of children with special needs often feel that they are the only ones who can handle their child’s care.  This is certainly true to an extent but that doesn’t mean that you can’t get away for a few hours every now and then. By leaving your child with a trusted sitter or family member, you are teaching your child to handle change.  Your child will develop the resilience and adaptability that every child deserves to learn, regardless of overall health.

• Seek companionship. You too deserve to be cared for.  Seeking help doesn’t always mean asking someone to do something.  Often what a care giver needs most is to maintain contact with friends and family. Take time to connect and laugh with others and free yourself from your usual worries.  Support groups, both online and in-person, can be helpful, too. The burden shouldn’t be on you to make it easier for someone to help you.  You have enough on your plate.  Besides, most people want to help.  If you let friends and family know what you need, they will know how to help you and feel less burdened—and that’s not just good for you, but for your whole family.

• You are a superhero. You may not leap buildings in a single bound or run faster than a speeding bullet, but you are a superhero nonetheless. Every day, you manage situations that a regular parent would think are impossible.  Allow yourself to recuperate. Whenever athletes do any kind of strenuous exercise, they rest to give their bodies a chance to recuperate and to avoid injury.  Allow yourself to do the same – mental exhaustion is real.

• Appreciate that things improve with time. Your child’s progress may not improve, his or her condition may be debilitating and deteriorating, and these are hard things.  But some things do get easier with time. Time, for better or worse means more experience, more practice and a greater perspective.

• Learn how to be a parent, not just a caregiver.  You’re a pharmaceutical dispensary, at home therapist, an insurance specialist and medical transporter.  But you’re also a parent.  We super parents tend to be busy and often over scheduled.  However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your kids. Read to them, snuggle with them, engage with them with what’s important in their worlds. Take the time to appreciate your children and to love them as only a parent can.

edz Be your child’s best advocate. You know your child best.  Don’t be afraid to speak up, to ask questions, to get multiple opinions and ask your doctor about the research. Doctors, teachers and therapists are all fantastic resources but if you don’t feel like you’re being heard or that your child’s needs are not being met, it’s very reasonable to get a second opinion. Don’t be afraid to fight for your child and their needs.  While the professionals are experts in their areas, you are the expert on your child!   

Make time for your marriage.  Marriage is hard work.  Parenting is hard work, period.  Parenting a child with special needs, is especially hard work. For those of you who are married or in a relationship, make time for that relationship away from your children.

• Celebrate the little things!  Brag about those accomplishments that might seem small to others but are huge for our kids. Our kids develop on their own clock, they learn skills late and some they never master. A first step forward on their own that they couldn’t do before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.

The role of a parent with a special needs child is indisputably a hard one. It can be extra rewarding, extra passionate, and will almost always make life extra interesting.  With the challenges come the rewards.  Caring for your child will require tremendous focus and unimaginable energy that may burn you out.  And it’s okay to let your guard down occasionally. After all, maintaining a healthy mind and spirit is a prerequisite when you’re evolving into a more conscious and determined parent.  One incredibly important reminder is to not let being the parent of a special needs child create or reshape your identity.  We are many things but being the parent to a child with special needs is part of our identity.  But it shouldn’t be all our Identity.  When you focus all your life, all your contacts, all of yourself around your child and their needs, you can get lost.  Do what you can to find things in your life that you enjoy. Engage in activities that bring you peace and solitude, like enjoying a glass of wine while listening to your favorite tunes. Find a hobby that you enjoy, arrange to meet with your close girlfriends for Saturday brunch, join a yoga class or spend the day shopping for yourself.

As a mother, grandmother, retired educator and child’s advocate who has worked with children for over three decades, I remain continually humbled knowing that there is good, there is joy, and there is a high-spirited pride that we feel for our kids.  All children need love, excitement, happiness, wonder, encouragement, and a sense of reverent engagement in their lives. Such joy and positive reinforcement can help to ensure that they emerge with a strong sense of self-worth, confidence, and the determination to keep going even when things are tough. There are no special formulas to follow when you’re a parent. There may be days when you feel alone in your struggle. However, connecting with others who can relate to your journey, who are living the joys and trails of raising a special needs child may serve not only as a priceless resource but can offer a long-lasting friendship that may last a lifetime.

This article appears in the October 2018 issue of Augusta Family Magazine.
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