misty & alison
thrive A RESOURCE FOR FAMILIES LIVING WITH LEARNING DIFFERENCES AND SPECIAL NEEDS
winter 2014
All About ABA
is it right for your child?
misty & alison meet the mom and
104
her vibrant daughter
SPECIAL NEEDS SUPPORT GROUPS
MAKING ME TIME A PRIORITY
PUBLISHED BY
ELF
22
thrive / winter 2014
WO
RD
therapies, resulting in a better outcome, according to a 2008 study conducted at Swansea University in Wales. Perhaps then, the time has come for a “me-time” intervention. ON THE BRINK
Six years ago, when her son Matthew was 1, McKinney mom Susan Dobrow went back to work as a teacher following a very difficult year. Matthew, who was born four weeks premature, has spina bifida, which occurs when a baby’s spinal column does not completely close while in the womb and results in nerve damage and other disabilities. Matthew spent seven weeks in the neonatal intensive-care unit, and when Dobrow brought him home, he required — and continues to require — constant care. Because he has problems swallowing, Matthew often chokes and needs to be suctioned many times a day. He can’t be left alone. During that first day back at work, Dobrow suddenly began sobbing.
©iStock.com/Victor_Tongdee
arenting a child with special needs is an allencompassing, long-term commitment that can be fraught with anxiety, stress and guilt. Between lingering on waiting lists for much-needed therapies, wondering about the future and lacking sleep, parents tend to put aside their own needs to be full-time caregivers. But who is looking after you? A 2010 Vanderbilt University study found that parents of children with physical or cognitive disabilities are more likely to experience chronic anxiety and depression. The continued stress of caring for a child with special needs can wear down the body, especially the cardiovascular, immune and gastrointestinal systems. For parents who think time spent on themselves is a luxury they can’t afford, consider this: Taking care of yourself and redirecting anxiety into positive thoughts can actually increase the effectiveness of your child’s
im f e o fo r E L r yo F yo E u N u r B fa A U m M il y
U HELP Y O
P
RS
t g n i t ak es m b H y ’s Y Wh t D a N h E w W is S
“I came home and had a panic attack,” she says. “It was just one of those moments where everything exploded. Soon afterwards, I was diagnosed with post-traumatic stress disorder. I didn’t realize until that moment how bad things were.” Scarlett Hurcomb can relate. Last year, the Arlington mom released eight years worth of worry, frustration and fatigue during a church group meeting after her 9-year-old son Aidan was diagnosed with autism. “I’d tried the self-sacrificing, 24/7 thing and I cracked,” admits Hurcomb, who, at the time, was feverishly putting her son on waiting lists for every therapy in the Dallas-Fort Worth area, while her then husband worked 10-hour days. Luckily, Hurcomb let her guard down in front of the right people, who immediately implored her to take a much-needed break. Jacqueline Hood, Ph.D., a Plano-based licensed psychologist and certified special education teacher with an expertise in autism spectrum disorders, sees parents like Dobrow and Holcomb all too often. She says it’s time for serious self-care when you can no longer ignore the toll stress has taken on your life — and your body. “When parents feel that sense of never having a chance to catch up or be with their significant other, or if they’re really angry, sad or guilty all the time, those are pretty big warning signs that something’s up that needs to be taken care of,” Hood says. “Think of yourself as a soldier: It’s absolutely key that you sleep, exercise and eat well. It sounds like an impossible task, but you have to prioritize and find somebody to help you.”
©iStock.com/Victor_Tongdee
FINDING THE CARE
Following her frightening panic attack, Dobrow immediately sought help. She found a loving personal care nurse (provided through Medicaid), who administers Matthew’s six daily medications and takes care of him during the day while he’s at school. Dobrow regularly sees a therapist and
“Think of yourself as a soldier: it’s absolutely key that you sleep, exercise and eat well.”
a psychologist. She also takes anti-depressants and anti-anxiety medication and has learned to rely on deep relaxation breathing and mindfulness meditation. All of these measures help alleviate stress and exhaustion, reports Dobrow, who still wakes several times each night to suction Matthew. Dobrow says reaching out to local resources for support, including Texas Parent to Parent and the Spina Bifida Association of North Texas, has been tremendously helpful, along with her regular participation in online chat groups. “It’s a good outlet,” she says, “because I found it very hard going to mommy groups when my kids were little; nobody else had the kinds of problems I had.” Hurcomb says her son Aidan’s autism diagnosis was particularly devastating: Her brother Raul, now in his 30s, has autism with severe mental retardation. He is still in diapers and is cared for full time by Hurcomb’s mother. While Aidan is high functioning, he still faces many challenges, such as difficulty coping in social situations. Currently Hurcomb is homeschooling him to quell his anxiety about bullying and frequent testing. “Trying to find your child’s place in the world can feel very lonely,” admits Hurcomb, who struggles with feelings of guilt and uncertainty. “I keep asking myself: Am I doing enough? Am I doing too much? Is this the right therapy or a waste of time? Will he regress?” Hurcomb, who is remarried to a supportive husband, looks to her faith for comfort; she says daily prayer eases her anxiety. “If I fall apart, so does Aidan. If my marriage is neglected, Aidan doesn’t have a strong father figure to guide him. So if that
means going to Starbucks by myself, taking a bubble bath or making plans with girlfriends, I have to do it.” SAFETY IN NUMBERS
Nichole Lecznar, a licensed professional counselor at Spectra Therapies in Plano and group therapist who specializes in autism spectrum disorders, agrees with Hurcomb and Dobrow: Joining parenting groups is vital to preventing feelings of isolation. “When you get another family’s perspective or meet another caregiver who’s going through similar things, it’s really helpful to have that forum to share ideas or even to vent,” she notes. To find the right group, Lecznar suggests asking the professionals caring for your child. Or, start your own meet-up group, so that you can find other likeminded moms, as Hood suggests. “You have to be able to reach out, and that’s so hard for many parents to do,” she says. “Focus on the important relationships in your life. I can’t say enough about how difficult they may be to maintain when you have a child with special needs, but you really need to do it because they are going to help reduce your stress significantly.”
ALONE TIME
Waking up an hour earlier than the family — either to exercise or to practice relaxation techniques like yoga or mindfulness meditation — has incredible benefits, Hood says. “Getting outside and looking at the beauty of nature, even if you just have one plant that you stare at, is an effective mindfulness exercise,” she explains. “These techniques usually take very little time to learn; what takes time is building them into your day so they become a habit.” Lecznar adds that date nights and respite care programs can help you carve out time just for you. “Try journaling or painting — anything you’re passionate about that has nothing to do with your child,” she urges. “The more parents think about themselves, the happier they are with their overall life satisfaction.” Hurcomb’s journey has enabled her to help other struggling parents. “On the good days, count your blessings. On the bad days, have grace with yourself, be kind to yourself and just try to get it right day by day,” she advises. “Don’t worry about the big picture every moment. Take that pressure off yourself.” Likewise, Dobrow is grateful to have found a way to deal with day-to-day stress. “Our main mantra is: ‘It’s tough right now, but it is going to be okay,’” says Dobrow. “There are going to be times where you will break down, so do that. Break down and then just keep going.” t
Helpful Resources TEXAS PARENT TO PARENT’S ‘PARENT MATCH’ PROGRAM
A statewide nonprofit organization developed for parents by parents, it provides peer support from other parents living with the same challenges as you. Austin, 866/8966001; txp2p.org/parents/parentmatch.html PARENTS ON CALL
Local volunteer parents provide support and information to other parents of children with special needs or disabilities. Deneesa Rasmussen, [email protected] or 361/389-5126. OUR CHILDREN’S CIRCLE
Family support group in McKinney offers workshops and support meetings, as well as Parent’s Night Out with free respite care, sponsored by First Baptist McKinney. Kirsten Johnson, [email protected]; occ.deltos.com/About_Us.html.
thrive / winter 2014
23
winter 2014
All About ABA
is it right for your child?
misty & alison meet the mom and
104
her vibrant daughter
SPECIAL NEEDS SUPPORT GROUPS
MAKING ME TIME A PRIORITY
PUBLISHED BY
ELF
22
thrive / winter 2014
WO
RD
therapies, resulting in a better outcome, according to a 2008 study conducted at Swansea University in Wales. Perhaps then, the time has come for a “me-time” intervention. ON THE BRINK
Six years ago, when her son Matthew was 1, McKinney mom Susan Dobrow went back to work as a teacher following a very difficult year. Matthew, who was born four weeks premature, has spina bifida, which occurs when a baby’s spinal column does not completely close while in the womb and results in nerve damage and other disabilities. Matthew spent seven weeks in the neonatal intensive-care unit, and when Dobrow brought him home, he required — and continues to require — constant care. Because he has problems swallowing, Matthew often chokes and needs to be suctioned many times a day. He can’t be left alone. During that first day back at work, Dobrow suddenly began sobbing.
©iStock.com/Victor_Tongdee
arenting a child with special needs is an allencompassing, long-term commitment that can be fraught with anxiety, stress and guilt. Between lingering on waiting lists for much-needed therapies, wondering about the future and lacking sleep, parents tend to put aside their own needs to be full-time caregivers. But who is looking after you? A 2010 Vanderbilt University study found that parents of children with physical or cognitive disabilities are more likely to experience chronic anxiety and depression. The continued stress of caring for a child with special needs can wear down the body, especially the cardiovascular, immune and gastrointestinal systems. For parents who think time spent on themselves is a luxury they can’t afford, consider this: Taking care of yourself and redirecting anxiety into positive thoughts can actually increase the effectiveness of your child’s
im f e o fo r E L r yo F yo E u N u r B fa A U m M il y
U HELP Y O
P
RS
t g n i t ak es m b H y ’s Y Wh t D a N h E w W is S
“I came home and had a panic attack,” she says. “It was just one of those moments where everything exploded. Soon afterwards, I was diagnosed with post-traumatic stress disorder. I didn’t realize until that moment how bad things were.” Scarlett Hurcomb can relate. Last year, the Arlington mom released eight years worth of worry, frustration and fatigue during a church group meeting after her 9-year-old son Aidan was diagnosed with autism. “I’d tried the self-sacrificing, 24/7 thing and I cracked,” admits Hurcomb, who, at the time, was feverishly putting her son on waiting lists for every therapy in the Dallas-Fort Worth area, while her then husband worked 10-hour days. Luckily, Hurcomb let her guard down in front of the right people, who immediately implored her to take a much-needed break. Jacqueline Hood, Ph.D., a Plano-based licensed psychologist and certified special education teacher with an expertise in autism spectrum disorders, sees parents like Dobrow and Holcomb all too often. She says it’s time for serious self-care when you can no longer ignore the toll stress has taken on your life — and your body. “When parents feel that sense of never having a chance to catch up or be with their significant other, or if they’re really angry, sad or guilty all the time, those are pretty big warning signs that something’s up that needs to be taken care of,” Hood says. “Think of yourself as a soldier: It’s absolutely key that you sleep, exercise and eat well. It sounds like an impossible task, but you have to prioritize and find somebody to help you.”
©iStock.com/Victor_Tongdee
FINDING THE CARE
Following her frightening panic attack, Dobrow immediately sought help. She found a loving personal care nurse (provided through Medicaid), who administers Matthew’s six daily medications and takes care of him during the day while he’s at school. Dobrow regularly sees a therapist and
“Think of yourself as a soldier: it’s absolutely key that you sleep, exercise and eat well.”
a psychologist. She also takes anti-depressants and anti-anxiety medication and has learned to rely on deep relaxation breathing and mindfulness meditation. All of these measures help alleviate stress and exhaustion, reports Dobrow, who still wakes several times each night to suction Matthew. Dobrow says reaching out to local resources for support, including Texas Parent to Parent and the Spina Bifida Association of North Texas, has been tremendously helpful, along with her regular participation in online chat groups. “It’s a good outlet,” she says, “because I found it very hard going to mommy groups when my kids were little; nobody else had the kinds of problems I had.” Hurcomb says her son Aidan’s autism diagnosis was particularly devastating: Her brother Raul, now in his 30s, has autism with severe mental retardation. He is still in diapers and is cared for full time by Hurcomb’s mother. While Aidan is high functioning, he still faces many challenges, such as difficulty coping in social situations. Currently Hurcomb is homeschooling him to quell his anxiety about bullying and frequent testing. “Trying to find your child’s place in the world can feel very lonely,” admits Hurcomb, who struggles with feelings of guilt and uncertainty. “I keep asking myself: Am I doing enough? Am I doing too much? Is this the right therapy or a waste of time? Will he regress?” Hurcomb, who is remarried to a supportive husband, looks to her faith for comfort; she says daily prayer eases her anxiety. “If I fall apart, so does Aidan. If my marriage is neglected, Aidan doesn’t have a strong father figure to guide him. So if that
means going to Starbucks by myself, taking a bubble bath or making plans with girlfriends, I have to do it.” SAFETY IN NUMBERS
Nichole Lecznar, a licensed professional counselor at Spectra Therapies in Plano and group therapist who specializes in autism spectrum disorders, agrees with Hurcomb and Dobrow: Joining parenting groups is vital to preventing feelings of isolation. “When you get another family’s perspective or meet another caregiver who’s going through similar things, it’s really helpful to have that forum to share ideas or even to vent,” she notes. To find the right group, Lecznar suggests asking the professionals caring for your child. Or, start your own meet-up group, so that you can find other likeminded moms, as Hood suggests. “You have to be able to reach out, and that’s so hard for many parents to do,” she says. “Focus on the important relationships in your life. I can’t say enough about how difficult they may be to maintain when you have a child with special needs, but you really need to do it because they are going to help reduce your stress significantly.”
ALONE TIME
Waking up an hour earlier than the family — either to exercise or to practice relaxation techniques like yoga or mindfulness meditation — has incredible benefits, Hood says. “Getting outside and looking at the beauty of nature, even if you just have one plant that you stare at, is an effective mindfulness exercise,” she explains. “These techniques usually take very little time to learn; what takes time is building them into your day so they become a habit.” Lecznar adds that date nights and respite care programs can help you carve out time just for you. “Try journaling or painting — anything you’re passionate about that has nothing to do with your child,” she urges. “The more parents think about themselves, the happier they are with their overall life satisfaction.” Hurcomb’s journey has enabled her to help other struggling parents. “On the good days, count your blessings. On the bad days, have grace with yourself, be kind to yourself and just try to get it right day by day,” she advises. “Don’t worry about the big picture every moment. Take that pressure off yourself.” Likewise, Dobrow is grateful to have found a way to deal with day-to-day stress. “Our main mantra is: ‘It’s tough right now, but it is going to be okay,’” says Dobrow. “There are going to be times where you will break down, so do that. Break down and then just keep going.” t
Helpful Resources TEXAS PARENT TO PARENT’S ‘PARENT MATCH’ PROGRAM
A statewide nonprofit organization developed for parents by parents, it provides peer support from other parents living with the same challenges as you. Austin, 866/8966001; txp2p.org/parents/parentmatch.html PARENTS ON CALL
Local volunteer parents provide support and information to other parents of children with special needs or disabilities. Deneesa Rasmussen, [email protected] or 361/389-5126. OUR CHILDREN’S CIRCLE
Family support group in McKinney offers workshops and support meetings, as well as Parent’s Night Out with free respite care, sponsored by First Baptist McKinney. Kirsten Johnson, [email protected]; occ.deltos.com/About_Us.html.
thrive / winter 2014
23
