In this Parent Perspective, Candace Cortiella talks with Julie Buick and Andy Kavulich, two members of the National Center for Learning Disabilities’ Parent Leader Team. Each is raising multiple children (some with special needs). They talk candidly about the challenges of meeting each child’s specific needs and maintaining balance, communication, and understanding within the family. Andy is the father of four children, and Julie is the mother of three.
Candace Cortiella: Let’s start off with this question: How do you juggle the demands of parenting children with special needs and their siblings [without special needs]?
Julie Buick: Raising children with multiple disabilities as well as typical kids can raise many challenges. When you have a very dynamic and diverse family, I think it’s important to celebrate everybody’s unique needs, strengths, and abilities. It’s also really important to make sure that you’re meeting the needs all of the children in the family.
[In our family] we celebrate everybody for their uniqueness, for what they have to offer and what they contribute to our family. I think that’s been a key to keeping things even and making sure that all the needs are met. We look at every child for what he or she needs as an individual instead of lumping them all together. We really try to meet them where they are.
Andy Kavulich: I think we were blessed because Grace, our oldest child, had learning needs that were very apparent at an early age. So my wife and I learned a great deal from her and were able to bring ourselves up to speed in understanding her learning disabilities and needs and tried to put her in the best situations so she could succeed
Also, during the course of [developing] that awareness, we really focused on her strengths. We’re not perfect but we always played to her strengths and tried to [help her] overcome the weaknesses she has with her learning issues.
Every family is different. With Grace being the oldest, we were able to learn from her and then once we saw that two of her three younger siblings were very similar in their profiles, characteristics, and development, it was very easy. It is a challenge though at times to celebrate the one sibling who doesn’t have the same sort of learning issues and characteristics. The earlier that you understand what your kid’s strengths are, the earlier you can really start helping them.
Candace Cortiella: Knowing that children with disabilities can require more [of your] time and energy, how do you make sure you don’t overlook the typical child in your family?
Julie Buick: Well, my family has a respite provider come in to take care of the boys, which allows my husband or me to go out with our typical daughter and give her the time that she needs. We’re giving our daughter that special “Mom and Dad” time. We look at what she wants to do and what her interests in the community are, and then we try to make that happen for her. The daily in and outs in our home make it very challenging for us to meet everybody’s needs. Sometimes my husband stays home so I can take my daughter and out and do something special with her.
We’ve learned over the years that [it helps] to have a Plan A and a Plan B. So often, as we go out as a family unit, some [situations] are not a good fit [for my sons] and may cause them to get over-stimulated if we don’t prepare them or set up the environment to support them. We’ve learned to bring two cars on occasion so that my husband or I can leave with the boys and still be able to give Kathleen that quality time and let her enjoy the activity.
So we really do try to make an effort and be aware of what she needs. She’s 16 so her way of telling us is not coming out and telling us directly, so we have to find those hidden messages that are telling us that she needs that quality time with us. Sometimes it may just be taking a walk around the neighborhood and being able to talk to us about what’s going on in her life, what’s happening at school, or the challenges that she’s having with her brothers. And we’ve done “sib (sibling) workshops” in the past which have allowed her to meet other children who are similar to her because they have brothers and sisters with disabilities. So there’s another avenue for her to get that much-needed break and often to be able to share with kids who get it.
But just getting out, being able to take five, ten, fifteen minutes out of my daily life with the boys and giving my daughter a little extra time can help. And we always keep an open relationship where she can come to us and tell us what she needs. We try to be accommodating. I try to give everything that I can to all the kids during the day. Certain times during the day can be challenging. So Kathleen has some ways to get my attention when she needs it, when I’m invested in something else. It can be challenging, but we definitely have to make a conscious effort to put ten or fifteen minutes aside for her every day where we can just talk about the day and reflect on the week and what’s going on in her life as well.
Candace Cortiella: You mentioned two things that I’d liked you to elaborate on a little bit. The first one was a respite provider, and the second one was a “sibshop.”
Julie Buick: Here in New York State, we have something called the Home and Community-Based Waiver through Medicaid. Through that [program], we get a respite caregiver who comes into our home one afternoon every week. She’s trained and understands my sons’ disabilities. She’s been with us for about four years, so we’re pretty comfortable with her. She knows the boys well so I feel secure enough to go out and leave them in her care while I do something with Kathleen. That’s the day Kathleen and I will go for a walk, shopping, to a movie, or to the gym together. Or we do something that deals with the community. It’s something that we look forward to as a mother and daughter. My husband is working at that time so it’s not something that he benefits from, but then he does things with Kathleen on the weekends that will provide her with some “Dad time.”
Not everybody has that opportunity. There are other types of respite care available to families. There are special organizations that provide in-home care depending on the needs of the family, either private pay or through a waiver and Medicaid.
And then the other thing was a sib shops which are support groups for children who have brothers and sisters with disabilities. We’re fortunate to have two sib shops in our area. It’s just a place where kids can go and connect with other brothers and sisters who have similarities to them, who understand what it’s like to have a brother or sister with a disability. And they can be honest and open, and it’s a support group for those kids. In the sib shops, we see an age range from seven- and eight- years-old to teenagers.
Kathleen has become a mentor in the sib shop. She more or less became a mentor because she was one of the older siblings in the group. She was able to give them insights and tell them about ways to be proactive and positive about having a brother or sister with a disability.
Kathleen has taken [mentoring] to the next level and has become an advocate for children with disabilities. She volunteers and gives back to the community and supports kids, not only her brothers but also other kids with disabilities in the community. I think that’s what we see in typical siblings in general — that they mature very early on. They become that “other parent” in the family, the rule-enforcers of the house. It can be a good thing but it can also be a bad thing because it leads to a lot of stress for that child.
She’s constantly worrying about her brothers. So it has to be a nice balance for the children, otherwise it can be a little daunting and overwhelming for them. So having support groups like a sib shop that can provide an outlet for children to talk about and express their emotions, but then also having respite care that enables the child to get out with their parents.
I think that’s where the nice balance comes into play. Sometimes the typical child has to be home and has to be mature and help out and make sure that their brothers and sisters are safe. They need that balance of getting that time alone and being able to connect to their mother and their father and being able to connect with the community and meet other siblings [in their situation].
Candace Cortiella: Those are two great recommendations that other parents might pursue. Andy, do you have any tips on how you make sure you don’t overlook the one typical learner in your household?
Andy Kavulich: Well, I just learned something from Julie because my “typical learner” child is only seven but I already see in her a lot of things that Julie just described. She is the one who sort of looks after her twin sister and helps her and her other siblings out a great deal.
So I already see the maturity developing in her. And now I look forward to maybe [helping] her tap into something when she’s older. To expand on Julie’s comments, we try to communicate as best we can to see where our typical daughter really is and what she’s feeling, and then we try to act on that.
For example, due to our kids with disabilities getting the programs and remediation they need, we weren’t able to participate in our local youth sports. But our typical learner was saying, “Hey, I want to play soccer.” We weren’t able to do a team but we’re able to get her involved in some soccer skills [training] that fit in with our schedule.
I have to say that’s really the balancing act that we just try to do – provide activities for them where they can shine and tap into their strengths. And that’s what we as a family unit keep trying to do. But I’m also encouraged to know that there may be some places [resources] I can turn to when my kids get older.
Candace Cortiella: Terrific. So do you both have any parting tips for other parents who are facing the challenge of raising multiple children with disabilities (such as learning disabilities) and other children who are typically developing.
Julie Buick: [I’d just reiterate] that it’s important to focus on the strengths and abilities of children with disabilities and then engage them within their school district, within their community and align them with people and with friends who have those same interests.
Early on, we lived more or less “by the label” because we were getting so many diagnoses [“labels”] for our children. And because getting services at school has to be deficit-basedbased and about the disability. So you start to get into the zone of thinking about the label and you’re saying your child is only about deficits and where they’re struggling.
But as soon as we were able to look at it differently (and thank goodness we did that earlier on,) we were able to see our children outside of their labels. And that’s really what we do; we embrace our children for their abilities and their strengths. I think that’s key because when you do that, it really shows respect and dignity for all your children (those with and without disabilities). And it allows you to give what each child needs individually.
So I would say, looking at your child outside the label and really looking at his or her strengths abilities, is key. That’s something that I would like to leave you with today.
Andy Kavulich: It’s also really important to be on the same page with your spouse. It’s been a blessing that my wife and I are really in it together and therefore, we’re able to help the kids where they are and keep evaluating where they need to go.
I’ve seen other situations with parents who were not on the same page, and it really can be a tough struggle. So I can hear through Julie’s comments that obviously she’s on the same page with her husband. Once you understand that working together as a team will help you move forward [you can] do what’s best for your children.
Candace Cortiella: That’s wonderful advice. Thank you both for joining us and thank you for your work on behalf of the National Center for Learning Disabilities Parent-Leader Team.
This transcription was made possible by a grant from the American Legion Child Welfare Foundation.