Before I became a parent, I had a career as a school psychologist and also taught psychology courses as an adjunct professor. I guess you could say, in effect, that I was considered an “expert”. People vary in their opinion of experts, but I believe that most folks are content to try things their own way until they run into problems that they, despite their best efforts, aren’t able to solve themselves. At that point, “experts”, be it the psychologist, pediatrician, plumber, IT geek, grandmother, mechanic, etc., become highly useful, even a godsend. I wholeheartedly believe in the utility of expert opinion, but also recognize that sometimes even “experts” may not offer great advice, or at least, advice that is helpful to one’s particular situation.
When MFP was around four-months-old, my naturopath suggested I speak to a parenting coach to get some support and ideas for dealing with MFP’s reflux and inability to sleep for more than a three hour stretch. Night wakings left her crying for at least an hour, often two (even with feedings and gentle soothing), leaving me fantasizing about being whisked away to a deserted island just so that I could get a few hours of uninterrupted sleep.
The parenting coach, we’ll call her Jill, seemed nice enough. As I settled into the armchair in her cozy and welcoming office, I immediately felt better just having someone listen and sympathize. And while none of the advice she offered was new to me, it was reassuring to know that I wasn’t the only mom who felt the way I did at the time. Just as the session was wrapping up, Jill offered some unexpected advice. “When MFP wakes up at night, just take off your shirt and let her play with your nipples.” “Um,” I replied, “I haven’t breastfed her since she was three-weeks-old. Are you suggesting comfort nursing?” (which I would have been ok with had I still been breastfeeding). “No,” she continued enthusiastically, “unless that’s what she wants to do. Just let her play with them, feel them, hold them…It’s what I did with my daughter.”
It took me a moment to process her suggestion. “Whoa lady,” I thought, not in my rational, professional voice, but in my incredulous, sleep deprived Mommy voice, “I’m all for breastfeeding, but my breasts are not chew toys! Is that the best you’ve got?” But instead of voicing these thoughts aloud, I quickly thanked her, told her to bill me, and made a hasty exit. To this day, I’m not quite sure what to make of her advice, but I’m pretty sure that nipple play is not a research based sleep intervention. I soon after sought the advice of a Ph.D. trained sleep specialist who gave me effective, personalized sleep advice that resulted in my child becoming a great sleeper and a MUCH happier child. Noticing that I was a quick study, obsessed with all things sleep related, and given my psychology background, the sleep doctor later suggested that I too become a sleep consultant, thus my second career began.
This experience proved invaluable to me, both as a mother and an “expert”. Good experts should be well trained, either through formal education or apprenticeship, and hands-on experience. Not all experts are good, but even the best expert advice won’t work if it isn’t well-implemented. For example, the advice of walking 10,000 steps daily can help you to lose weight, but only if you actually walk. General advice can be valuable to “typical” situations, but sometimes, advice has to be specifically tailored to the situation, such as when doing “sleep training” with a child who has separation anxiety or a circadian disorder.
But general advice can be a useful starting point, thus the proliferation of parenting books on the market. I’ve read many of them, most with mixed feelings. When my former school psychologist colleague, Dr. Tara Egan, told me she was writing a parenting book, my first reaction was, “Awesome! I can’t wait to read it and test it out on my kid!” I knew Tara was effective in her work in the schools and in her private practice and she is also well trained. But my next thought was one of mild apprehension. What if her book was just mediocre or even awful? When I finally got my hands on a copy, I was relieved when I realized that not only was it as good as I had expected it to be, but it was actually one of the best parenting books (dealing with behavior issues) I have read to date.
“Better Behavior for Ages 2-10” is a refreshing change from the non-research based parenting books out there that advocate interventions that can actually worsen behavior problems. When I was training, my theoretical paradigm was Behaviorism. I think many people mistake behaviorism, especially when utilized to improve the behavior of children, for an approach that is mechanical and based upon “bribes” (think back to your Intro to Psych class, Skinner, and Pavlov’s dogs). You know, sticker charts, M&M’s for using the potty, liberal praise, etc. Instead, Dr. Egan’s book demonstrates that, properly implemented, it’s a method based upon understanding the motivations behind problem behaviors and addressing them in a logical, caring, and empathetic manner in order improve a child’s behavior. This book takes the mystery out of problematic childhood behavior by offering practical and effective strategies to improve behavior and parent-child interactions.
Basically, the idea behind the book is to address problems behaviors using a multifaceted approach. Dr. Egan suggests creating an environment that sets the stage for success. Is your child well-fed? Getting adequate sleep? Is there structure in place? Are you setting appropriate limits? Could there be sensory issues that are negatively impacting your child’s behavior? Is your child getting enough high-quality interactions with you? Are you modeling “good” behavior and effective coping strategies? Are you meeting your child’s needs for affection? Are you firm but loving in your approach to discipline? Are you using a “nurturing communication style”? When problem behaviors occur, when are they happening? How are they being reinforced? How can you change the environment (set the stage) and alter the consequences to promote better behavior?
Furthermore, Dr. Egan discusses different parenting styles, their usefulness, how to assess your own parenting style, and how to adapt your style to suit your child’s “love language”. She explains the anatomy of temper outbursts (“tantrums”), why they occur, and how to address them. Dr. Egan also demonstrates, through real life examples, how to appropriately use natural and logical consequences and punishment (i.e. time-out, loss of privileges, etc.) to improve your child’s behavior.
Keep in mind, this book is written to address problem behaviors in “typical” children. While many of the strategies can be adapted to work with most children, kids with severe emotional, behavioral, health, and/or intellectual disabilities may need more specialized intervention. But implemented as is, I believe that her advice, when properly utilized, can address the majority of problem behaviors in the average 2-10 year-old.
What I liked most about the book is that it really does take the mystery out of problem behaviors by helping parents to understand what factors lead to issues, how to analyze problems, and how to best approach them. And yes, I’ve tested out some of her suggestions with MFP and am happy to say that they have resulted in behavioral improvements. BUT, like any good intervention, consistency and adherence are key. For example, we all know that sometimes, the best way to immediately address a temper tantrum is by ignoring the behavior (within limits of safety); however, there are always those couple of times when it just seemed easier to bribe you kid with a cookie in the checkout line rather than experience that painfully embarrassing situation of your child thrashing around while screaming of his hatred for you. It happens. But unfortunately, those couple of random cookie bribes have now increased the likelihood of that same behavior reccuring in a similar situation. Like the gambler feeding that “lucky” slot machine quarters in hopes of winning again, your child will persist in his lovely behavior in hopes of breaking you down due to the “intermittent” reinforcement he received in the past. No mystery. Just Psychology 101. But once you understand how behavior works, you as a parent can use it to your advantage. Does this sound too clinical or mechanistic? I don’t think so. We’re not talking M&M’s and sticker charts. We’re talking about lovingly and thoughtfully setting the stage for good behavior by meeting your child’s needs, modeling prosocial behavior, and addressing issues in a productive, calm, rational manner. We may not always perfectly achieve these goals, but they are worthy goals for which to strive. This is definitely one book that I’m happy to have in my parenting “toolkit”.
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Andrea with her younger daughter, Alicia
This quote succinctly describes Andrea, my childhood best friend. As children, we lived next door to one another, hung out at her pool each summer, had sleepovers, shopped, gossiped about boys, and went to grade-school together. We even attended the same college and roomed in the same dorm, only losing touch once she transferred to a different school. Our childhoods were mostly easy and carefree. That’s not to say that we didn’t have the normal hardships that many kids go through, but overall, our good memories outweighed the bad. When we envisioned our lives as adults, we pictured careers, marriage, kids, and the same contented, fun childhoods for our children that we had shared growing up.
Our lives went separate ways after college, but we eventually ran into one another again shortly before I was to move from our hometown in Connecticut to North Carolina for my husband’s job. One spring day, Andrea knocked on my office door at one of the three elementary schools in town where I was the assigned school psychologist. It turned out that she worked at that very same school as the media specialist assistant, but on different days than I was assigned. We were employed at the same school for almost three years without running into one another and had finally reconnected just as I was about to move! Despite that we hadn’t seen each other in over a decade, talking to her felt like we had merely picked up where we had left off years earlier. Our conversation was easy and jovial, only turning more serious as Andrea described her younger daughter Alicia’s health challenges.
Alicia, who was then a preschooler, was exhibiting severe developmental delays and significant behavioral issues. Andrea explained that Alicia had originally received a diagnosis of Global Developmentally Delayed with Autistic features; however, almost two years later, Alicia’s diagnosis was changed to Autism due to her inability to make significant gains developmentally and because she was exhibiting characteristics typical of children with Autism, such as lack of eye contact and impaired verbal communication skills. I later asked Andrea when had she realized that Alicia’s development was different than that of a typically developing child? She responded,
I think the point when I knew there was something more going on than just a minor developmental delay was when Alicia was around 14-16 months old. Alicia had had various ailments/issues from birth, but in the big picture they were just “small” things that many infants could develop. There were moments when she would be completely inconsolable and would only calm down when held and rocked or in her swing. Due to severe reflux issues that began by the time she was two months old, Alicia would be more comfortable in a propped or upright position most of the time. She spent lots of time in her swing, which helped to also calm her down. The drawback of this was that she would usually lean her head to one side and began to develop her neck muscle that way. We had her evaluated as an infant and it was determined that she had torticollis. Torticollis is relatively common in newborns. Boys and girls are equally likely to develop the head tilt. It can be present at birth or take up to 3 months to develop.
Andrea further explained,
Babies with torticollis will act like most other babies except when it comes to activities that involve turning. A baby with torticollis might tilt his/her head in one direction (this can be difficult to see in very young infants); prefer looking at you over one shoulder instead of turning to follow you with his or her eyes; if breastfed, have difficulty breastfeeding on one side (or prefers one breast only); and, work hard to turn toward you and get frustrated when unable to turn his or her head completely
We had Alicia evaluated and began physical therapy by the time she was 6 months old. We took her to CCMC [Connecticut Children’s Medical Center] and she had physical therapy weekly for about 3 months. We also incorporated neck stretching exercises at home to heal Alicia. With stretching and exercises, the torticollis completely healed within, I believe, 4-6 months.
Alicia seemed to be meeting some of her developmental milestones on time, like eye contact and cooing, but this did not last long. By 10-12 months old she wasn’t doing much cooing or babbling. She barely attempted to crawl and did not initiate trying to stand on her own. I can’t remember the exact months when she did meet certain milestones; honestly, once we started realizing things weren’t happening when they were supposed to, we started focusing on getting through one day at a time.
I believe we brought Alicia to a developmental pediatrician when she was about 6-8 months old. We had her evaluated, which included filling out pages upon pages of questions regarding milestones, behaviors, and health concerns. Alicia was also observed by the developmental pediatrician while she attempted to hold a crayon or grasp a cup. The doctor checked her motor skills, eye contact, ability to sit unassisted, and various milestones she should have been meeting at different points [in her development]. She was thought to be just delayed at that early age. Her diagnosis back in 2004 was Global Developmentally Delayed with Autistic Features. In the beginning, the “autistic features” aided in trying to figure out a diagnosis for her and to help her obtain services like physical therapy, occupational therapy, speech, etc.. She began receiving Birth to Three [early intervention] services at about 12-months-old and these continued until the day before she turned three and began pre-school in a special needs program in 2006.
In 2009, Alicia’s diagnosis would once again be changed, this time to Rett Syndrome. According to The National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/disorders/rett/detail_rett.htm), Rett Syndrome is a, “…neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.” It is believed that nearly all cases are caused by a mutation in the MECP2 gene found on the X chromosome. Andrea explained how they finally got the correct diagnosis.
We brought her to a pediatric neurologist due to full body tremors she began having at around 4-years-old. She had an MRI done to check for possible seizures but was thought to be having just postural tremors. The MRI did not show anything abnormal. The tremors continued and seemed to be getting worse but we kept an eye on things for about a year. We did end up switching specialists to a new developmental pediatrician and upon her observing Alicia, she ordered another MRI and an EEG. The EEG did show some abnormal brain activity but no regular seizure activity so it was thought to still just be postural tremors. The neurologist also observed Alicia doing some hand wringing and mentioned the thought of testing her for Rett Syndrome. We had also had genetic testing through a geneticist at UCONN [Medical Center], along with an evaluation in their audiology department. She was tested by the first neurologist at CCMC for Angelman’s Syndrome but it came back negative. She passed her audiology tests and was thought to be hearing fine, which we still believe is the case today. In 2009 we had more genetic testing done, this time for Rett Syndrome due to the hand wringing, screaming, tremors, and lack of verbal communication. Alicia was also having severe issues with constipation and various gastrointestinal difficulties. We almost did not get her Rett Syndrome diagnosis when our insurance company called to inform us they did not cover the genetic testing that we had done. We could either pay the cost, which was $5,000, or decide to cancel the test results before they were reported. We decided to cancel the results and would save up the money to have the testing done. Well, I got a call from her pediatric neurologist that she had been contacted by the doctor who runs the lab where the testing had been done. They wanted to let her know that even though the results were not going to be reported, that they came back positive for the Rett Syndrome diagnosis. So we do not know what actual deletion Alicia has causing Rett but at least we had a definite answer for her diagnosis. We finally had an answer and a diagnosis, although life altering, in October of 2009.
Having a child with special needs, especially as significant as Alicia’s needs are, can be extremely taxing to a parent’s physical and mental health and also puts a heavy strain on the family. While all parents have their struggles, caring for a child who has both medical and behavioral issues can be especially difficult and anxiety provoking. I asked Andrea what a “typical” day is like in her household.
Funny…just reflecting upon this question, the first thing that pops into my mind is how far from “typical” our days are. But a typical day in our house always revolves around a strict routine. I wake Alicia up by 7am to get her ready for school. Amazingly, she always wakes with a smile or giggle no matter what’s going on. She comes straight into our living room and sits in her recliner- yes, one that is completely hers [Andrea laughs]. She watches “Curious George” [cartoon] while I prepare lunches and am on Hailey, our middle-schooler, to get up, dressed, eat breakfast, and ready on time for her ride to school. Alicia is unable to feed, change or clothe herself, so the routine begins. It includes changing her out of her pjs and changing her diaper- she is not fully potty trained, especially at night- no way am I waking up this kid during the night to change her! We are fortunate that Alicia sleeps through the night but it is usually very difficult to get her back to sleep if she is woken up. I dress her for school, feed her, put on her jacket, if needed, and her harness, which she needs to ride the bus. We go outside by 8 am, the bus comes almost always at 8:02, and off to school she goes. Now I get a “break” and get to go to work…[Andrea chuckles]. Alicia gets home from school anywhere from 2:30-2:45 pm. I then put her in the car to go pick up Hailey from school and come home. Alicia then usually chills/unwinds/melts down for a bit (with Curious George again) while I clean up from the morning. I have been trying to get her to use her iPad more frequently at home, primarily right now for games, but hopefully also to aid in her ability to communicate. She is not used to using it at home though, and is definitely fighting me on it. Usually she relaxes to “Curious George” while I clean, cook, do laundry, help with Hailey’s homework, and anything else that needs to get done [to manage the household]. Alicia seems to be getting very picky about what parts of “Curious George” she likes to watch. It is sometimes maddening! I have had to fast-forward, reverse and change her DVDs anywhere from 20-50 times throughout the afternoon and bedtime. It is daunting even trying to keep her calm enough to get anything accomplished! We feed her dinner around 5:30 or 6 pm, which takes about 45 mins to an hour. She has been a slow eater lately, often taking breaks in between. I start getting her ready for bed around 6:45 pm. This includes bathing her, toileted, brushing her teeth, putting on her pajamas and giving her some downtime in her bed for at least 15-20 mins as she watches “Super Why” and “Clifford”. She is an extreme creature of habit and routine is key around here.
Sisters, Hailey and Alicia
This “typical” day does not include the numerous medical appointments that Alicia often has to attend. Because Alicia (now ten-years-old) cannot communicate verbally, it is often difficult to determine if behavioral issues are due to a medical concern (such as a UTI), environmental factors, or internal needs. As such, Andrea always ensures that there aren’t underlying medical reasons for Alicia’s behavioral issues and/or mood changes. Despite the hardships Andrea endures caring for a child with special needs, she maintains a positive attitude. Always quick to crack a joke and with a ready laugh, Andrea’s smile disguises the emotional and physical pain she experiences as a result of caregiver burnout. Andrea expresses gratitude for her supportive family and her tight-knit social network, which includes other parents of children with Rett Syndrome. I asked Andrea what she would like others to know about families that include a child/children with special needs. She replied,
I think one of the biggest and most important things that has stuck with me being a special needs parent….never jump to conclusions. We have all seen those kids that have no manners or “discipline” act out screaming, hitting or throwing all kinds of tantrums in stores. Well, I never thought I would end up in a position like that, having a child that does “act out”. But it’s not because I don’t discipline, ignore, or give in to my child that she acts like this. It’s due to the fact that most times, Alicia gets way overstimulated in a store due to the noise, amount of people, and all that sensory input. She acts up because she is unable to tell us that it’s too much for her and that she’s not feeling comfortable. My husband and I have had people say things to us about how our child is acting and that we should be able to control our child’s behavior and not let her hit me or scream at me the way that she does. About two years ago, I had a confrontation with a woman at a store. She started off by making a disgusted face and rolling her eyes when Alicia would scream out. I was over-stressed and just trying to pick up a couple of things ASAP because I wanted to get out of there as quickly as possible. She [the woman] then shook her head from side to side and I point blank asked her if she had something she would like to say to me. She told me that she couldn’t believe I let my child scream in public like that and let her hit me. She told me I needed to teach my child proper behavior. I looked at the woman and told her that my daughter was unable to speak due to having Rett Syndrome, a debilitating disorder that robs her of the ability to verbally communicate when she is upset or hurt. I told her that it took all the strength that I had just to “try” and take Alicia with me to the store because the screaming and commotion has happened plenty of times before. I then informed the woman that she might want to stop jumping to conclusions, simply assuming a person doesn’t have “control” over their child’s behavior, because in reality, that parent is likely doing everything they can to include their child in “normal” day-to-day activities that are difficult due to their child’s disability. I also added that if it bothered her that much she was more than welcome to leave the aisle we were in or even the store. She was taken aback a bit and did end up muttering a quick “I’m sorry”. I was extremely angry at that point and I came back with “Yes you are.” Not one of my finer moments but I just blew up.
One of the biggest and most vivid memories I have- an A-ha moment- was after Alicia was first diagnosed as autistic. I was watching an episode of “Oprah”. Oprah was interviewing parents who had children with Autism and she asked a mom what is the one thing she would want people to know when they see special needs parents struggling? The mother replied that it’s really very simple, especially not knowing a parent’s or child’s specific circumstances…she said it would mean everything to her if someone would just walk up to them and say “Is there anything I can do to help you?”. This is such a simple act of kindness but something that truly means the world to me! I even do it when I am out at the store and I see a parent having a difficult time.
Andrea admits that while she would have never chosen for her daughter to be born with Rett Syndrome, having a child with special needs has given her a different perspective on life. I asked her to further elaborate.
I think that one of the main things that I’ve learned is humility. So many of us constantly complain about anything and everything because that’s just seems to be the way the world communicates nowadays. Alicia, and so many other children with disabilities, don’t have that option. I often think to myself, “What would my world be like if I couldn’t speak and was unable to convey my feelings, sorrows, frustrations, or thoughts with another person?”. Alicia is stuck in this position each and every second of her life. Just as one would do with an infant, we have had to learn what Alicia’s cries, screams, and vocalizations mean…She must get frustrated at times on those days when it takes us longer to “figure it out”. She just can’t say she’s hungry, in pain, or not feeling like herself as typical children are able. There are obviously lots of other things I can list about what Alicia has taught me. Among these are patience- most days [Andrea laughs], gratefulness, faith, endurance and strength. She is also an absolute encouragement to so many because if she can wake up each and every day with a smile and giggle, then what’s stopping anybody else?
Andrea also explains that despite Alicia’s disability, her daughter has the same needs and desires as other children. Alicia loves her “blankie” (Andrea has an estimated 15 backups just in case) and her favorite foods are cold pizza, cucumbers, tomatoes, and anything crunchy, like potato chips and cookies. Alicia is fond of trips to the Big E (New England’s “Great State Fair”), Walmart, and Target. She has grown to love car rides, as long as the scenery is good and the car is moving! Like her mother when she was a child, Alicia loves spending summers at the pool and shopping with her friends.
We don’t always choose our lot in life, but it’s our response to life’s challenges that determine the strength of our character. Andrea is one of the strongest people I know. She demonstrates a sense of compassion and inner beauty that is likely the result of embracing the challenges of being a special needs parent. And while her capacity for love and caring is insurmountable, there are things that we can all do to help parents and children who struggle with the realities of having a disability. Have compassion for other parents and children, rather than drawing conclusions without knowing another’s life circumstances. Lend a hand if you can. Sometimes, a parent may just need a break. A kind word. Encouragement. Pampering. A Pumpkin Spice Latte. If you are close to a special needs parent, insist on helping. Sometimes, we all have difficulty accepting help. Instead of saying, “Let me know if you need anything?”, say, “I will come over tomorrow and watch Joey if you want to run out and get a minute to yourself.” Try to avoid negating their struggles with platitudes such as, “Everything happens for a reason”, and “It will be ok.” Do offer to listen without judgement or without trying to “fix” the situation. Raise awareness. Do speak up if you hear someone using the term “retarded”. See the child with special needs as a whole person, not just their disability. If your own children ask questions, explain that all children, even if they act or look differently, want to be loved, have fun, laugh, and make friends. Find the commonalities rather than the differences, although it’s ok to acknowledge and explain the disability. If you think you may be saying the “wrong” thing, it’s fine to ask the parent of a child with special needs what they would prefer. Lastly, understand that we all have good and bad days, both parents and children. Try to extend compassion to all those you meet, special needs or typical. Because after all, we all want the same things…to be loved, understood, cared for, and accepted for who we are. Thank you to Andrea and Alicia, two very special people, who have helped me to understand this.
Alicia with her friend