What Do Kids With Special Needs Really Need?

Advice for Parents

Look with your eyes

At that child,

That boy,

God’s mistake,

That broken toy,

What should we do?

Who should we blame?

How will we manage

This life of shame?

We were so perfect.

Our life an A+

So why did this tragedy

Happen to us?

See with your heart,

This child,

This boy,

Nature’s gift,

Our pride and joy,

We’ll take on the challenge,

We’ll take it in stride.

Every step of the way

We’ll stand by his side.

Together, we’ll conquer,

 We’ll never give in,

Look out world…

We’re determined to win!

We all face numerous challenges as we grow. For a child with a disability these life challenges are just different. For example, a child with no disability must learn how to walk. But, a child with a physical disability may need to learn how not to walk and maybe use a wheelchair instead. Just like walking gradually becomes a normal part of a non-disabled child’s life, using a wheelchair to get around becomes a normal thing for a child who can’t walk.

Although this article on “Advice for Parenting Kids with Special Needs” has a subject specific target audience, it offers valuable expert insight beneficial for parenting all children with and without challenges. So, it’s a “MUST-READ” for all parent and parents-to-be. Who are these so-called experts that think they know what kids with special needs really need? Who else but kids with special challenges all grown-up now!

Just a Normal Child

At the age of eight, Ann Watson’s legs suddenly began to get progressively weaker and soon she could no longer stand on her own.  After months of diagnostic testing, the doctors concluded that Ann would never walk again. As to be expected, Ann’s parents were devastated and felt like their life had ended. Ann, on the other hand, knew it was just the beginning!

“I never really thought about my disability as a disabling trait. From the very start, I just knew I had to adapt to my inabilities and move on,” says Ann who’s now in her late 30s and works in finance. “When my disability started my parents acted like they were in a state of mourning. I’m a mother so I understand that it’s hard for parents to see their children in distress. But, I, like most kids, really needed my parents support not their negativity.”

Besides the negativity, Ann also found her parents’ “three monkey” attitude very frustrating. They refused to accept her disability for nearly a year and as a result wouldn’t buy her a wheelchair. So, Ann was literally trapped at home until the school district stopped providing the in-home tutoring and said Ann had to go to school.

“My parents like many parents acted like the three proverbial monkeys…You know see no evil, hear no evil, speak no evil. Not to say disability is evil. But, that’s how society views it and so did my parents,” says Ann. “I think my parents thought that if they did not acknowledge  my disability or pretend it wasn’t there, it would magically disappear!”

Since Ann’s disability didn’t start until she was eight, Ann has some recollection of her pre-disability days as well. “Although my mental faculties were totally intact and I was still the same person, people close to me and even my parents started treating me differently… Like, I had suddenly turned into an alien!” Ann says. “That’s something that children and adults with disabilities have to become accustomed to…and we do but it shouldn’t be that way. Parents should understand that.”

Needless to say, Ann’s parents did eventually come around. Ann has achieved multiple successes in life with her parents by her side. “I love my parents and wouldn’t be where I am today without them,” Ann admits.                                                                                                                                        
        

A Different World

Ann’s good friend and dorm mate from college, Katie Black remembers facing similar hurdles growing-up as well. 38 year old Katie teaches English as a Second Language to adults at a non-profit agency full- time. She loves teaching and has lots of experience doing it. You could say Katie was born to teach especially since that’s around the time she started teaching the world about her world.  

Katie has cerebral palsy resulting from an extended lack of oxygen to her brain during birth. Katie’s parents struggled with accepting her disability.  Her mother committed suicide when she was four and Katie was placed in foster-care by her father at age six. 

“It’s hard to say whether or not my disability directly affected either of these events,” Katie says. ”My adoptive parents love me. But, they always wanted me to be as "normal" as possible.  They expected me to complete chores just like their other children.  I'm sure they made concessions for me in a lot of areas.  I don't think they really knew what to "do" with me on many occasions but I think they did whatever they felt was best at the time.”

Society generally views disability in stereotypically negative ways. But, according to experts on disability culture, disability should not be classified as negative or positive. Just like gender or race, disability is simply a state of being.

Kids with special needs usually learn to look at disability as a way of life. Their parents should too.

“I think that there is a big difference between a congenital defect and an acquired disability.  You cannot miss abilities you never had,” Katie says. “’You adapt without realizing you are doing it, because that's what you need to do to function.  It doesn't stop you from WISHING things were different, but it's a daily part of your life.”

Kids with special needs face various challenges on a daily. But, many of these challenges don’t result from their inabilities. They occur because of the inaccessible structures and inaccessible attitudes. Parents of children with special needs (and everyone, for that matter) should do everything they can to make the world a more accessible place for all kids.

Katie wishes her parents had done so. “To this day, their house is not disability friendly, with many steps, small doorways and too much furniture.  I use a manual chair in my daily life, but I am forced to use my crutches to navigate in their home,” says Katie

Katie also wishes that she had more of a role in some of the decisions that were made for her as a kid. Parents often get so caught up with a child’s special needs, they forget that all kids, challenged or not, have wants as well.

“I wish my parents let me participate more in the IEP process throughout high school.  They made many decisions regarding classes, electives and even my academic track without asking what I might want,” says Katie. “For example, I was enrolled in typing and accounting classes because a standardized test said I would be "good" in business.  I never got the hang of either class and lost the chance to take other classes I would have actually enjoyed or learned something from.”

Kids with disabilities must adapt to a different world. Even though it may seem difficult, parents must recognize their child’s world and make it their own.

“My parents are loving and caring people.  But, they are only NOW starting to understand some of the daily difficulties of having a disability because their bodies are beginning to fail them as they age. When I visit, I sometimes hear comments like, "It's really hard to get in and out of the bathtub…I can't get my legs over the side." and I say welcome to MY world!” Katie says with a smile.

Because You Loved Me

Mark Meyers and Bryan McCormick weren’t born into Ann and Katie’s world. They got their by accident. Both young men were injured as teens and both use wheelchairs to get around now.

Bryan wanted to help others like himself. So, he chose a career in vocational rehabilitation. Mark owns a consulting firm. In their late twenties now, both Mark and Bryan owe many of their life successes to the unlimited support of their parents.

“I think they handled my injury extremely well. The most significant factor against them was the social stigma that comes with having a child with special needs. But, they were always positive and encouraging about my future. Their beliefs, values and attitude have made me what I am today!” says Mark.

Mark hopes to raise his own son to possess the same beliefs to reach for the stars. “They just accepted my limitations from the beginning with a very optimistic attitude. They made me believe in my unlimited potential not my physical limitations. I am proud of the care I received and the mindset that was instilled in me.”

Bryan, like Mark had no problem adjusting to his disability. “I use a manual wheelchair as a mobility aid and have to use it everywhere I go. It is now part of my identity which I am now very comfortable with,” Bryan says.

Although Bryan’s parents were initially very shaken up by his injury, Bryan doesn’t think he could have asked for a better support system than his mom and dad. “I don't think my parents could have done anything differently nor would I have wanted them to do so. They were one of the main reasons I was able to overcome my injury. They provided me with unlimited support and encouragement. They also kept me moving and active with sports, school, and just life in general. I wouldn't be where I am today without the help from my parents. I owe everything to them,” says Bryan with a proud look on his face.

Like most parents however, it did take Bryan’s parents a while to adjust. “My mom wanted to help me  every step of the way (which is good), but she soon realized that I would need learn to do things on my own in order to let me gain the ability  to maximize my independence. I don't think I will ever know the extent of how much my injury affected my parents. It's hard for me to imagine myself in their shoes: I have no children of my own at this point,” Bryan explains.

In contrast, Bryan feels it was easy for him to adapt. “I was relatively young and didn't have my life planned out yet, which enabled me to customize my career path and lifestyle to my disability. If my injury had occurred when I was older, with a home, a career, etc., I would have had to make even more drastic changes than I had to while living with my parents,” says Bryan.

Bryan can’t say for sure how well his parents have accepted his disability. All parents want their kids to have a life free of struggles.

“When one has a disability, I don't think one can say that it is entirely possible to be treated as normal. It's an inextricable part of having a disability. My parents were always trying to go out of their way for me and to make things easier for me. So in that respect, I didn't feel like a normal person. But they never showed me any less love. Whereas their behaviors around me may have changed, their love for me only grew. All I can say is that they did a great job!”

Words of Wisdom

Thanks to awesome parents and amazing attitudes, Mark, Bryan. Katie and Ann have achieved their goals by replacing obstacles with abilities. Here some final words of wisdom for parents so they can help their kids achieve the same!

Mark says, “First thing, it is not going to be easy…But that’s the challenge you are supposed to win over. You will have to turn the tide against normal stigmas without ever speaking about it out loud or even thinking about it. Help your kids to face the force of the ocean and show them how to swim!”

“I would say this: Be available and supportive more so than being directive and unsupportive. It was good that my parents were ready to support me when I needed them but there were some things I just wanted to learn and do on my own. If your child asks for help and assistance, then provide it. But if you child wants to try things without help, don't force assistance just to make things easier. I always tell my mother: It's not easy to climb mountains…but that's where the best views are!” says Bryan.

Kate has this advice for parents…

• Give your child every opportunity to interact with other people even when they (those people) are uncomfortable.
• Listen to what they want and need… Both physical help and mental stimulation that they actually ENJOY are key.
• Let them dream and be supportive even if the dreams don't seem realistic to you.
• It is okay for your kids to fall AND fail…Someday you may not be there to rescue them.
• Teach children early how to find and access services they may need in the future.  Being able to advocate for themself may save their life someday.
• Teach them that they will get farther with a smile and positive attitude than they will with a frown and a complaint.
• LOVE THEM… warts and all!

Ann has this to add, “Help your kids believe without limits. Teach them that they have the ABILITY to fly…even if they need to use prosthetic wings!”