My child is struggling 
Now that my child has 
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 “sib shop.”
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.
