7 Things Parents Need To Know About Caring For A Child With Special Needs

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little girl holding her parent's hand

Disabilities do not discriminate and parents of special needs children know this better than anyone. 

Anyone’s child can be born with or develop a medical or mental health condition. Anyone’s child can be involved in an accident, resulting in a lifetime of challenges.

Parents are often surprised and shocked when they're told that a child has a chronic illness.

That shock and disbelief may be more intense when a parent receives an unexpected phone call, requesting them to report to the emergency room after a terrible accident.

Following the initial wave of overwhelming numbness, parents have no choice but to "get it together." They have to take charge of the unfamiliar and figure out how to best help their child.

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Here are 7 things you need to know about parenting a special needs child.

1. Accepting the reality of your situation makes everything else possible.

The challenges of parenting a special needs child can seem endless — tube feedings, prosthetic legs, medications, endless supervision, school meetings, and hours on the phone with insurance companies.

Accepting a number of these life changes and unknowns is difficult. The tasks are overwhelming. The demands seem to occur all at once. And it can be emotionally exhausting. You certainly may not always feel productive and positive.

Can you handle this? You actually can. Allow yourself to experience these emotions. Through this process, you will discover how much inspiration you will gain from your child.

You will see your child’s courage, tenacity, and ability to succeed and thrive in the face of countless obstacles. This energy is contagious.

Focus on positive energy and think of the "best possible outcomes."

2. You will learn a lot about yourself on this unfamiliar path.

As the parent of a child with special needs, you will learn a lot about a particular diagnosis or condition that, initially, you may have known nothing about.

Researching and reading will fill your day as you become familiar with medical terminology, medications, and treatment options. But, most of all, you'll learn a lot about yourself.

You will learn the true meaning of listening, waiting, and being resilient. You will learn what life is like from your child’s perspective.

This will afford you the opportunity to discover personal strengths you never realized you had. So, take the time to listen to your child. They will tell you what they need and teach you what you need to know.

3. You'll understand the "cans" and "can'ts."

Although it's inspiring to celebrate the many things your children can do, the harsh reality of what they can’t accomplish echoes loud and clear.

It can be heartbreaking to watch your child fall behind as other kids seem to learn skills quickly and almost automatically.

Know that in time, skills that seem impossible for your child to learn at first are likely to be ones they will eventually master.

Anything is possible. Cement in your mind the idea that many of the "can’t do" skills are actually "can't do yet" skills.

4. You'll realize that feeling alone is not the same as feeling lonely.

Many times, feeling alone is linked to the exhaustion and disappointment of not knowing answers to the medical and mental health questions you encounter each day.

Solitude is believing that others can’t begin to understand your day-to-day life. But that's likely untrue, and you're not alone at all.

You're now a part of a powerful group of strong and determined parents who learn from each other, understand each other, and relate to the tenacity of each day without needing to explain it.

Reach out and connect to these support groups of parents and caregivers. They get it. Even when you feel alone, you’re not.

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5. Listen to the tone of "we."

Keeping your relationship strong with your partner is key to balancing the needs of your family as a whole. The challenges you experience as a couple will encourage you to realize each other’s strengths and vulnerabilities.

Although you and your partner may deal with challenges differently, know that you're in this together.

Keep a clear perspective. You and your partner are on one side of the table, the same side, and the challenges or situations are on the other.

Approach each situation as a united front. 

6. People will say or do shocking things that concern your child.

For those who haven’t interacted with a child with special needs or even the parent of one, there may be uncertainty, even anxiousness, over what to do or say.

Most caregivers and parents of children with special needs understand the reasons for these concerns. They eagerly use any interaction between their child and others as a teaching moment.

People who behave insensitively are not necessarily acting out of malice, but rather ignorance and awkwardness.

With that said, some people are just mean. What they say about your child, even when your child is present, may even be shocking.

At first, you may not know what to do or say. But, in time, you will know how best to respond. Be confident that you will learn when to push back and when to let it go.

7. Learn how to embrace the good and those who care.

Family members of children with special needs have a profound understanding of what caring for and loving these amazing kids is all about.

They are the messengers who demonstrate to their friends and countless others how to communicate and get to know our children.

They know that a child with special needs is just like every other child, except they have an extra set of needs. Those who know and embrace your children do not see a "disability." Instead, they see the unique individuals they are.

Your life will be enriched by this experience on every level.

Now that you're aware of what being a parent of a special child entails, you will be able to provide the best outcome for your child.

You can also connect with a powerful group of passionate parents and caregivers who understand the challenges and triumphs that crop up on this unexpected journey.

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Nancy Musarra Ph.D. is a licensed clinical psychologist in Ohio, USA. She authored the book, “The New Normal; 7 Things to Know as You Care for and Love a Child with Special Needs.” For support, questions, or information about workshops, books, or first responder training, visit her website.