special needs siblings 1328

Gionna Paulin, 14, is like many teen girls—she likes volleyball, track and field, pop star Nick Jonas and walking her dog, Rocco. However, unlike her peers, she also knows what it means to be “the other one.” Her 4-year-old brother, Joey, has a rare and terminal mitochondrial disease, which has left him unable to walk, talk, sit, stand or swallow. Much of Gionna’s parents’ time is spent caring for Joey, and she says she sometimes feels forgotten.

According to the Sibling Support Project (www.siblingsupport.org), there are more than 6 million Americans with special physical, developmental or mental health concerns. Most of them have typically developing siblings. The organization works to boost peer support and information for brothers and sisters of those with special needs, and to increase awareness of sibling issues.

Don Meyer, director of Sibling Support, says, “These brothers and sisters will be in the lives of family members with special needs longer than almost anyone. If they are provided with support and information, they can help their siblings live dignified lives from childhood to their senior years.”


Learning to Speak Up
Gionna’s mom, Roseanna Paulin, says, “I have missed school functions, play dates and just one-on-one time with Gionna because of the constant care Joey requires.”

She says that lack of time has sometimes caused Gionna to become frustrated and say things like, “In this family you have to be sick to get attention.”

Debbie Howard, R.N., and coordinator of Children’s Hospital’s hematology and oncology clinic, says those feelings are normal. “We encourage siblings of kids [in our unit] to just tell their parents that they need more time from them,” she says. “It’s ok to say you need special time. We want to prevent the kids from acting out by making sure they can express openly when they feel left out.”

Gionna, who dresses and feeds Joey, and prepares his medications every morning, says she has learned to speak up more often. “I just keep telling my parents what I need. I tell them when I need a break, and they will let me go to a friend’s house or go have time to myself.”

Meyer says the bottom line is, “Siblings have a right to their own life and a right to who they are.”


Balancing Act
What can parents do to keep these lines of communication open, to prevent their healthy child from becoming frustrated and shutting the family out?

Howard says balancing the needs of both children is important. “If you put too much attention on the child with extra needs, the healthy child will become resentful, even to the point of having physical symptoms that mimic those of the special needs child.”

Roseanna says one of the best things to do is to listen. “It sounds simple but when you have feedings, meds, going to the doctor for illnesses, it’s easy to let the healthy child get lost in the shuffle. They may be self-sufficient, but they still need attention.”

She says she tries to spend time with Gionna on the weekends, when dad Larry or Roseanna’s parents can care for Joey. “We might get our nails done or we just go for a walk. When I have time with her, I try to make the most of it.”

Howard offers some other tips. “Set aside time each day or at least each week for the healthy child. Even 10 minutes a day will work; it’s not so much about quantity as quality.

“Many of the kids we see say, ‘I wish Mommy or Daddy would color a picture with me.’ It’s the simple things you forget when you’re so into caring for a special needs child.”

Sibling Support’s Meyer says parents need to educate themselves about siblings’ issues. “Brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future and care-giving demands,” he says.

“Brothers and sisters also face issues that are uniquely theirs, including resentment, peer issues, embarrassment, and pressure to achieve.”


“That’s My Brother”
Like Meyer mentioned, siblings of those with special needs can sometimes feel resentment or embarrassment about their situation. Relationships with schoolmates can sometimes be difficult, and many teens vacillate from being uncomfortable to being protective when their siblings are around.

“I get embarrassed sometimes when kids at school say, ‘Who’s the kid in the wheelchair?’ ” Gionna says. “I just say, ‘That’s my brother.’ ”

However, she says most of the time her friends are supportive, coming over for big birthday bashes, pumpkin-carving parties and Christmas caroling gatherings that Roseanna plans as a way to make Gionna feel special.

But it’s not always easy. “Sometimes it bothers me when friends come over and they go play with Joey, because they’re supposed to be here to see me,” Gionna says. “But I never say anything to them because I’d feel guilty.”

Meyer says it’s a good idea for siblings to meet other children on a similar path so they don’t feel so isolated. “Our ‘Sibshops’ bring brothers and sisters together in a recreational context and gets them talking about their siblings and their feelings so they know they are not alone.”


Keeping It in Perspective
For Gionna, the hardest part is that Joey is not a “normal” kid she can play with, she says. Many of her friends have brothers Joey’s age who are now in school, and that makes it especially tough, her mom says.

“We just remind her that Joey was put here for a reason and we just have to consider ourselves blessed that God chose us to care for him,” Roseanna says.

Gionna adds, “I have a new perspective on people and how to focus on the person. I appreciate my family more and take things for granted less.”

That makes it much easier to enjoy whatever time she has left with her little brother.


Books
How to Talk So Your Kids Will Listen and Listen So Your Kids Will Talk, by Adele Faber.
Living with a Brother or Sister with Special Needs, by Donald Meyer and Patricia Vadasy.
Being the Other One: Growing Up with a Brother or Sister Who has Special Needs, by Kate Strohm.

Sound Check Mama
Tiffani Hill-Patterson blogs about her family’s experience with deafness and cochlear implants at SoundCheckMama.com.


Give Them the Attention They Need
–    Spend a few minutes each day checking in.
–    Make birthdays and holidays extra special.
–    Listen to your child’s frustrations.
–    Give them a break from caregiving.
–    Help them find peers in a similar situation.


-----------------------
Tiffani Hill-Patterson
writes about parenting, health and fitness.

Access tons of resources for families with special needs: Special Needs Resource Foundation of San Diego.

The Most Important Siblings in the World

The Most Important Siblings in the World

I see a fierceness in people who have a sibling with special needs, in addition to a special love they share so willingly.   My daughter isn’t usually the subject of my articles because she . . .

Read more

Emotional Tune-Up: How to Stay Healthy in Times of Stress

Emotional Tune-Up: How to Stay Healthy in Times of Stress

Professional artist Amanda Gomes knew her emotions were stretched to the limit when she faced off with her 12-year-old son with a genetic anomaly over an art project he refused to complete. "Art is . . .

Read more

Support Business Owners with Disabilities

Support Business Owners with Disabilities

Support business owners with disabilities by purchasing products and services from our list of ShopABLE vendors. Doing so helps these individuals to achieve independence and self-reliance, and encou . . .

Read more

San Diego Father/Son Team Creates Lights that Delight!

San Diego Father/Son Team Creates Lights that Delight!

When you speak with Randy Schimka, Engineer at SDG&E and father of two boys with Autism, you immediately know two things: he is a committed dad; and he really, really enjoys electronics. Randy is . . .

Read more

Make the Holidays Manageable for Children with Special Needs

Make the Holidays Manageable for Children with Special Needs

Holidays provide your family with a break from the ordinary, time spent with extended family and friends, and also a chance to reinforce traditions. However, jammed schedules and unpredictable routi . . .

Read more

How to Reduce Holiday Stress for Families of Children with Autism

How to Reduce Holiday Stress for Families of Children with Autism

Holidays can be stressful and over-stimulating for anyone, but particularly for children with autism. We have pro tips from experts, such as when opening gifts as a family, try passing around an orn . . .

Read more

Especially Sleepy: Better Sleep for Children with Special Needs

Especially Sleepy: Better Sleep for Children with Special Needs

Many children with special needs also face significant sleep challenges, a draining double-whammy that leaves millions of parents and children exhausted. The National Association of School Psychologis . . .

Read more

How to Support Siblings of Children With Special Needs

How to Support Siblings of Children With Special Needs

Gionna Paulin, 14, is like many teen girls—she likes volleyball, track and field, pop star Nick Jonas and walking her dog, Rocco. However, unlike her peers, she also knows what it means to be “t . . .

Read more

Challenges and Benefits of Having a Sibling with Special Needs

Challenges and Benefits of Having a Sibling with Special Needs

Having a sibling with special needs is a unique experience that provides both challenges and benefits. The feelings that arise in children are often complicated. The love, appreciation and compassio . . .

Read more

5 Things to Know About Parents of Children with Special Needs

5 Things to Know About Parents of Children with Special Needs

My husband and I adopted our daughter when she was nine years old. She has a long list of mental health diagnoses. We quickly discovered that parenting a child with special needs results in the whol . . .

Read more

Be Family Informed – Sign up for our Newsletters below!

Subscribe