Tag Archives: special needs

Different, Not Disordered: An Interview with Dr. Barbara Probst

By Rita Brhel, API’s publications coordinator, managing editor of Attached Family magazine and an API Leader (Hastings, Nebraska, USA). Originally published in the 2013 “Loving Uniquely” issue of Attached Family magazine (available free of charge to API members–and membership in API is free).

Headshot_(2)_copyWe often hear the importance of treating children fairly, but at Attachment Parenting International (API), we advocate rather to love each of our children uniquely. Because every child—just like every adult—is one of a kind, each individual parent-child relationship forms to the distinctive shape of each other’s differences in temperament, interests, opinions, aversions, conversions and other subtle nuances of what makes each person and their interactions unique.

API celebrates every person’s unique traits, but some children’s differences set them apart from societal expectations enough that daily interactions—whether at home, childcare or school—can be challenging. Rather than viewing our children through the lens of understanding, however, our society’s response is often to see these differences as “symptoms” of a disorder and to follow up with treatments that may not resolve the problem.

I am excited to share a discussion with Barbara Probst, PhD, LCSW, author of When the Labels Don’t Fit, on her approach to facilitate understanding among parents and teachers in order to discover a new relationship with sometimes-challenging children based on appreciation and respect instead of illness.

RITA: What inspired your alternative approach to “treating” children whose differences often lead them to being diagnosed with disorder?

DR. PROBST: I feel quite strongly about the way our culture seems to be viewing every difference, difficulty, struggle and quirk—every extreme or unusual behavior—as a disorder, especially when it comes to kids!

The idea for When the Labels Don’t Fit really grew out of my experience as a clinical social worker. So many parents were coming to me with kids who were intense, complex, confusing, rigid, provocative, volatile, inconsistent—challenging children who had either been given multiple diagnoses and treatments, none of which really helped, or whom no diagnosis seemed to fit.

These parents were understandably looking for some kind of explanation, some way to make sense of their child’s behavior. Yet the only thing they were offered was a negative framework, a way to categorize their child by what was supposedly wrong or missing.

There was no framework that also took into account a child’s strengths, talents, affinities, needs, style, temperament—the things a child loves and gravitates toward—as tools for understanding how that child responds to the world and who he or she really is. There seemed to be an assumption that “naming the disorder” was the key to assessing what was going on and making it better—as in the medical way, “fixing the problem” by diagnosis and cure—but it was obvious that this narrow approach wasn’t really helping anyone, neither kids nor their parents.

I got curious and started to investigate the whole “diagnosis explosion”—more and more kids receiving psychiatric labels, at younger and younger ages, for fewer and milder symptoms. The statistics are pretty staggering! For instance, one in every five American children meets current criteria for a psychological disorder, with three times as many kids now being diagnosed with emotional or behavioral disorders than were diagnosed 15 years ago. It makes you wonder if there’s really something wrong with 20% of our kids or something wrong with our definition of “normal.”

As a culture, we’ve pathologized a whole range of traits and ways of interacting with the world that used to be part of the variety of human experience. Some of the difficulties come from a poor fit with the environment, some from the struggles that are just part of living and growing up, and some are from unrealistic expectations and intolerance for kids who push the envelope or make us uncomfortable.

It’s not that a child’s struggles aren’t real or that some kids aren’t truly hard to raise. Certainly, there are kids who do things that seem odd or excessive at various points in their development, and of course it’s painful for parents when they can’t seem to reach or handle a child they love. And it’s not that “anything goes” or that kids don’t need to understand limits and develop empathy. But finding a disease-based category for the child’s problems isn’t the answer either! Just because a child has difficulty managing stimulation or frustration, hates change or needs to ground herself through touch, it doesn’t necessarily mean that those difficulties are indicators of an underlying pathology.

RITA: This is what many parents refer to as “spiritedness” or “high needs.”

DR. PROBST: I knew there had to be a better, more direct way to understand and help these challenging kids and their parents. I began focusing on the specific issue or trait, rather than the label that “explained” the trait as a symptom of one or another disease, zooming in to the feature, like perfectionism or impatience, that lay behind the problematic behavior. I wanted to understand who a child is, not what disorder he or she has—to be truly solution-focused and figure out why the roof was leaking instead of how to reward the child for mopping the wet floor.

RITA: That’s a great analogy. How did this approach work in the field?

DR. PROBST: I began to apply this new approach in my work, looking for a “difficult” child’s core features as the key to what made that child tick. Again and again, this new approach brought practical and positive results where nothing had helped before—in an amazingly short time!

I began to give presentations and workshops to parents, educators and mental health professionals, showing them how to use the temperamental map I’d developed to figure out how unusual or extreme traits interact with elements of the environment, and then how to target strategies—concretely and proactively—to a child’s specific features. It was so empowering! It gave parents real hope.

They began to see their challenging child as someone intriguing instead of someone to control or fear. What a great experience!

RITA: What temperamental differences do you find create the most friction? How would you define a “challenging child”?

DR. PROBST: Let me start by saying a word about temperament. Temperament is your essential nature, your innate way of being in the world. The early view of temperament, however, like the model Chess and Thomas developed in the mid-1970s, tended to present temperament as a series of good/bad polarities: attentive or distractible, adaptable or inflexible, and so on. I find that quite biased and value-laden, to be honest, like another set of pejorative labels.

It’s really about the fit between traits and context, not about some traits being intrinsically better than others. After all, a highly tenacious child who won’t cede her turn at the kindergarten easel until she’s satisfied with her painting is seen as resistant and antisocial, but she’s seen as admirably persistent in the science lab.

More broadly, if we lived in a culture that valued curiosity and responsiveness instead of order and self-restraint, we’d think that a child who could sit still for an hour, ignoring all the interesting people and impressions around him, as having “attention surplus disorder”!

So it varies, and traits that seem to be problematic in one situation or at one age can be an asset in another, the seeds of a child’s authenticity and fulfillment.

In addition, temperamental traits exist on a continuum, like a high need for stimulation or a low tolerance for change. Although traits in the middle may make you more mellow and adaptable to a wider range of contexts, no trait is inherently “better” or “worse” than another.

Think of it descriptively, rather than judgmentally: Some kids go off on tangents, some can’t bear to leave something unfinished, some find comfort in order and repetition or, on the contrary, always want change. Some like to plunge right in while others take time to warm up and then need to disengage slowly. Within each dimension, there’s a range, with a child tending toward the high or low end when he’s stressed.

Friction is more likely to arise, then, when a trait or its manifestation is at one of the extreme ends of the continuum, especially when the environment has a narrow zone of tolerance. A fixed time schedule—“It’s 10:00, put away your journals and get ready for recess”—can cause a shrieking tantrum in a child who has to “complete his mission” or needs to stop incrementally. A classroom full of stimulating choices can make a perfectionistic child, overwhelmed by all the roads not taken no matter what she chooses, highly anxious or irritable.

RITA: What about temperamental difference between a child and an adult?

DR. PROBST: By “environment,” I also mean the people in the child’s world. If you’re a parent who thinks spontaneity is fun, for example, and you have a child for whom that’s distressing and who really needs to know ahead of time exactly what to expect in order to feel safe, or vice versa, you’re more likely to encounter misunderstanding and conflict. For example, does your child prefer to know what she’s getting for her birthday, or does she want to be surprised?

So it’s often the mismatch, rather than the trait itself, especially when a child hasn’t matured enough to develop a repertoire of coping strategies or is blamed by adults who expect him to be the one to do all the adapting, rather than being curious and open to small changes in the environment that might create “wiggle room” or a “margin of tolerance.”

It’s also important to remember that different traits can lie behind the same challenging behavior, so you need to step back and figure out why your angry child won’t go to bed. Is it because of an irregular inner rhythm or pajamas that “don’t feel right”? Does he need to disengage a bit at a time because of high intensity and focus? Does she need to finish her game because she’s a perfectionist who can’t bear to leave something incomplete? Does he need a set of tactile markers to anchor the verbal instructions?

Threats, logic, cajoling, even offers of kindness and generosity—“how about an extra story?”—may have nothing to do with the reason your child refuses to go to bed. It’s like throwing solution darts at a situation in the hope that one will somehow stick! It’s not a matter of changing the exterior result—getting the child to “behave” and go to bed—but of understanding the interior cause and the child’s interaction with elements of the environment, including space, timing, tempo and sensory factors.

So a “challenging child” is one whose unusual, extreme or erratic traits have been misunderstood and mishandled, often due to a poor contextual fit. Your child’s need for movement or silence or control still must be met proactively, but a need that’s been respected and met, even partially, tends to lead to far less “challenging behavior” than a need that’s been ignored, denied or shamed.

RITA: What steps would you suggest for a parent seeking to learn a different way to look at and act toward their child?

DR. PROBST: One of the most powerful things parents can do is to change their language. Describe your child, to yourself and to her, as organized rather than obsessive, curious about life rather than distractible. Instead of calling her picky, tell her: “You sure do know what you like!” Instead of stubborn: “You’re not a quitter!” That helps her feel she’s not fundamentally defective and helps you feel more open and positive, which results in a less tense relationship that benefits everyone.

You can also use language to put borders around troublesome behavior. “You’re the kind of person who has a tough time with disappointment (or waiting, feeling rushed or feeling there are too many rules for how to do something).” That gives a precise, bounded and concrete place to begin, rather than making a child feel globally wrong or defective.

When a trait like low adaptability, for instance, is likely to pose a problem, talk about it in advance. Name it, predict and use respectful curiosity to help your child make a plan: “It really bothers you when kids change the rules for Capture the Flag. Variations aren’t fun to you; it just feels like they’re ruining the game. So what’s your plan if that happens today? Any ideas about what you can do?”

If your child has had a successful experience of managing a similar situation in the past, remind him of his past success and let him be the expert: “Remember how well you handled things that time the pizza place turned out to be closed? What was the secret of your success?”

If he’s not yet been able to handle it well, offer a suggestion in the spirit of experimentation. Collaborate with your child as detectives or scientists on a quest for data: “Well, I know something that tends to help people who like things to stay the same. Are you game to try and let me know if it helps?”

Tell your child: “I see that you really like to make your own decisions.” Include that feature in advance, rather than punishing your child afterward for asserting her desire to be in control. Give her a way to be involved in the decision about how to clean up, for example, before it’s time to clean up.

This kind of practical, respectful approach is so much more effective than trying to maintain complicated systems of points and penalties! Remember that your child is doing the best he can under the circumstances, given his limited resources. It’s not about reward and punishment, but about the power of self-knowledge. Your goal, in the end, is to help your child be happy and successful because of who he is.

RITA: Some parents still struggle to set limits with their children. It’s as if they and their child aren’t talking the same language.

DR. PROBST: A few core principles lie behind the more than 60 practical strategies in When the Labels Don’t Fit. One principle is to proactively and concretely match the strategy to the feature. For instance, a child who has difficulty feeling time needs a way to organize externally what she can’t organize internally. Tell her: “Two more times going down the slide,” (a unit of action), rather than, “Five more minutes till we have to leave the playground.”

A child who can’t bear disappointment needs a backup plan that’s already in place right from the beginning. For example: “My Plan B is chocolate chip cookie dough ice cream if they don’t have rocky road.” Your child can figure out his backup plan before getting in the car to go out for ice cream, then write it on an index card and put it in his pocket. Unexpected let-downs are harder, but the Plan B approach will be more likely to be accepted if your child has already practiced it in other situations.

A child with a ten-minute attention span needs a planned break after eight minutes.

A child who needs to control and becomes angry at not being in control needs a safe avenue to express power with temporal and spatial boundaries. What can she control? Can you give her a Magic Coin that she can “spend” each day on something where she can be the “boss”? That helps her learn to make and live with choices. Remember: If the only power you give a strong-willed child is the power to refuse, she will surely use it.

And so on. Once you get the idea that it all stems from “the kind of kid this is,” it becomes so much easier to be effective.

Another important principle is to show your child that you “get it.” Don’t try to make your child feel better by telling him that “it’s not a big deal”—to him it is—or that he doesn’t really feel what he feels. A child who’s hurt or angry at being rejected needs you to respect his reality and his temperament. If you deny or dismiss his experience, he’ll think you’re lying or don’t care or both. It’s better to say, “I get that it really hurts.”

Then think about his temperament. Is he the kind of person who feels better when he plunges into a new activity or when he has a quiet space to be alone? Does he tend to ruminate and thus need diversion to interrupt the cycle, or does he lock his feelings away and need help bringing them to the surface?

Too often, unfortunately, we end up rewarding a child for not being himself. A child who needs to touch or move, for instance, gets praised for not touching or not moving, rather than being given a safe way to meet his temperamental need for touch or movement. Then we’re surprised when that child becomes depressed or anxious or hostile.

Begin at the level where success is possible and build from there. Lowering the necessary dose gradually can be an empowering way to help a child manage her need for movement, praise, control and so on.

RITA: How do parents know when they may need more help, when a child should be evaluated for ADHD, bipolar disorder, obsessive-compulsive disorder, et cetera?

DR. PROBST: Certainly there are children whose difficulties go beyond an unusual temperament or poor temperament-environment fit. It would be just as wrong to dismiss a serious condition as it would be to over-diagnose a minor one. When we call every moody adolescent “bipolar” or every fidgety preschooler “ADHD,” we trivialize the very real suffering of those who truly do merit the label.

Deciding if a child may have an enduring problem beyond a quirky temperament is a complex process. It’s important to remember, however, that there’s no objective test for any of these diagnoses like there are for medical conditions like asthma or diabetes; the determination is always a subjective one. The criteria rely heavily on words like “frequently” and “often” and on checklists completed by adults rather than on a child’s self-report.

But if difficulties persist despite strategies to reduce stress and maximize adaptation, are present under a wide range of circumstances and cause significant impairment, then it may be wise to seek an outside evaluation.

It’s also important to remember that a child may still need help, even if she doesn’t necessarily meet the criteria for an official mental health diagnosis. The way our insurance reimbursement system is set up requires some diagnosis in order to justify the need for treatment under the principle of “medical necessity.” So the mental health clinician may select the label that seems the closest match, the least stigmatizing or the most likely to get the child the services he needs.

Yet in working with the child, what’s often more significant than the formal label are the specific impairing traits, which may or may not correspond to items on the official symptom list. For instance, “doesn’t feel time” and “is a perfectionist” aren’t on the list for any of the educational or mental health categories, even though they’re common problems.

RITA: Thank you so much, Dr. Probst, for your time and insights! Can you share any final thoughts on this topic?

DR. PROBST: It’s vitally important for us to keep questioning the idea that “difficult” or “different” means disordered! We need to reject the idea that every child who’s hard to handle or doesn’t fit in has a psychiatric disorder.

Many children go through tough times or seem extreme, eccentric, provocative or immature at various points in their development. But that doesn’t mean they have a disease that needs to be cured, medicated or taken as the most important aspect of who they are.

We need to ask the right questions. Instead of trying to figure out if a child has ADHD, Asperger syndrome or bipolar disorder, we need to take the labels apart, zoom in to understand each feature and find specific places where change is possible.

We need to identify the source of a problem—usually in unmet needs, discord and imbalance, not from something inherently wrong or missing in the child’s makeup—before trying to solve it by generic approaches. We need to tailor every strategy to fit a child’s specific traits and needs, and to take responsibility for how we, too, need to adapt. We can’t ask our kids to do all the work.

TAF2013lovinguniquelyYou can read more in the “Loving Uniquely” issue of Attached Family magazine, in which we delve into temperament and how it intersects with parenting and the development of attachment style, and we challenge the notion that every hard-to-handle child needs a diagnosis. The magazine is free to API members–and membership in API is free! Click the link above to access your free issue or join API.

Saved by AP and Now 8 Kids Later: An Interview with Margie Wilson-Mars

By Rita Brhel, API’s  publications coordinator, managing editor of Attached Family magazine and an API Leader (Hastings, Nebraska, USA).

photo (1)My husband and I have three children, and we consider our family to be quite busy especially as our children grow older, develop their own interests and add their own activities to the family calendar. I am thankful for Attachment Parenting International’s Eight Principles of Parenting as I feel the foundation for secure attachment that we laid in the early childhood years has helped keep us connected in spite of our full schedules. Still, it is mind boggling sometimes to think of what it would be like to add another child to the mix.

And then I met Margie Wilson-Mars of Salem, Oregon, USA. A parenting writer, Margie and her husband of almost 20 years, Robert, have eight children ages 27, 25, 23, 21, 14, 12, 9 and 8—seven sons and one daughter, three of the boys who are on the autism spectrum. Margie and Robert also have three grandchildren ages 7, 6 and 3.

Now there’s a full household! I could hardly wait to share her Attachment Parenting (AP) story.

RITA: Thank you, Margie, for your time. To begin, how did you decide to first try out the AP approach?

MARGIE: By the time I found out there was an actual thing called AP, I had already been practicing it.

I was only 19 when I had my first son. My mother-in-law had been an oddity in the very early ’60s and breastfed her boys. My mother, who was 15 years older than my mother-in-law, was in my ear constantly with, “You just have to nurse for three weeks and then it does no good.” It was simply a reflection of her generation.

Even in 1987, I was the odd one out breastfeeding and refusing to let my son cry it out. I watched Dr. Jay Gordon on “The Home Show” on ABC—so radical then! My mom told me I was punishing myself.

RITA: Your mom didn’t agree with AP?

MARGIE: For the record, she was legitimately worried about me. It’s just what she knew. She was an amazing mom.

By the time my mother passed away, she was finally comfortable with my parenting style. Acceptance means the world to new moms, to all moms.

RITA: So who did you lean on for AP support?

MARGIE: When my daughter was born 19 months later, I found La Leche League meetings. I am a very solitary person, so in hindsight, I wish I’d participated more, but it did give me validation for what I felt.

I just got “worse” from there! I met Peggy O’Mara, went Dr. Sears happy—yeah, I was hooked.

RITA: And your husband is supportive of AP?

MARGIE: After getting remarried, my new husband instantly accepted and participated in AP. In fact, I don’t even recall discussing it. When our first son was born, he slept with us. Well, I should say he slept with his dad because he was only comfortable on Daddy’s hairy chest! Most of them did the same, but our last, preemie Adam, was partial to sleeping on his brother Mark or his “Sissy Mama,” our only daughter, Stephanie.

[Editor’s note: Visit the API website to learn more about infant sleep safety and download API’s Infant Sleep Safety Guidelines brochure.]

RITA: At one point, you mentioned to me that AP saved your life. Can you expand on this?

MARGIE: When my first baby, Steven, was born, we moved in with my parents because I was scared to death. When he was 2 weeks old, my older sister came upstairs into my bedroom and asked me what I was doing. Apparently I calmly answered, “I’m going to try and finish feeding this baby, and then I’m throwing him out the window and following.”

I honestly don’t remember how it happened, but I ended up at my mother-in-law’s house where she tucked me into bed for some much needed sleep and took Steven. She would wake me up to feed him, keeping an eye on us, and then send me back to bed.

Her gentle manner just blew my mind, the total opposite from my family. Even the way she bathed him was so soft and stress free. No more watching the clock between feedings or freaking out because he didn’t poop that day.

My depression ran deep, and it took getting pregnant with my daughter Stephanie before it totally lifted. Being constantly reassured that listening to my instincts was not only OK, but good, made all the difference. I have no doubt that if I’d continued on the path I was on, I wouldn’t have made it.

RITA: The quality of parent support can really make all of the difference. I’m glad you found support when you did.

MARGIE: There have certainly been huge bumps in the road since, but my mother-in-law set the tone for my parenting. No matter how rocky things got at times, our attachment was never affected. For example, when my daughter and I clashed through her teenage years, she told me she never felt like she couldn’t crawl into bed with me and know that everything would be OK. Her grandmother is truly the one to thank for that.

RITA: I’m thankful for her, too. The world needs more parents like you—and her! So how has AP worked out for your family as it has grown?

MARGIE: I think the best thing was the ease of taking care of the babies when they were little. When the oldest four were teenagers and the babies were little, we had a gigantic cushy spot—spots are very important in our home—in the living room where I could just be with all of the boys, yet stay accessible to the older ones. It also forced my autistic boys to be social with their brothers.

People are still astonished when they see how cuddly our autistic sons are.

RITA: What is it like seeing your oldest children becoming parents themselves?

MARGIE: Even though we still have little ones at home, seeing our daughter with her children—just wow! She’s the best mother, so instinctive and giving. Our oldest son is a newly single dad and so intensely bonded to his son.

The evolution of parenting, seeing them working so hard to correct the mistakes we made and become even better, closer parents to their children: It’s a beautiful thing to see.

We’re really doing the same thing with our younger boys—improving and evolving. It can be a struggle to stop feeling sorry for yourself and just move forward.

The bigger the family, the more you need Attachment Parenting.

RITA: You mentioned that AP seems to be helping in parenting your children with autism.

MARGIE: This is huge for us.

My third child, Mark, has Asperger’s syndrome. He is from the first wave of autistic children born in 1990 when it started to skyrocket. When he would nurse, he would pull his entire body away, trying so hard not to be touched any more than he had to. The more I’d pull him in, the harder he would fight. Autism wasn’t even on the radar. Mark self-weaned at 8 months old, and I was crushed. He was happy as could be as long as he was on his own.

When our sixth child, Nathan, was 3 months old, our oldest son kept saying, “Something’s wrong with him.” Teens are so subtle. We thought maybe he was just sensitive because he had suffered a birth trauma when my cervix was lipped over his head for over an hour while pushing during labor. An hour after birth, his face turned nearly black from the bruising.

Months later, while I was sick, my husband took Nathan for a checkup. We say that the baby we had died that day. Rob brought home this terrified, seemingly hollow baby we didn’t know. If there was something wrong before, it was a million times worse that day.

Having had Mark, I knew that holding Nathan, feeding him and snuggling him through his fears was the only way to go. People are amazed when they see how connected he is. If I didn’t have him, my husband did. If he didn’t have him, his big sister did. He is a little cuddle monster, and while he has full-blown autism, he shows no signs of “don’t touch me, don’t look at me.”

By the time Justin, baby number 7, came along, we knew fairly early and said, “Ah, we have another Aspie!” Sure enough, he has Asperger’s like his older brother, Mark.

The parents of autistic kids I know have them in day-long therapy, speech class, tactile class, et cetera, et cetera. There’s even one mom I met who put her 12-year-old into a group home when he hit her 4-year-old. She brings him home on Saturdays. I cried when I heard. It still breaks my heart to think about it.

The biggest difference is in how bonded we are to each other. It’s not unusual to see 140-pound, 12-year-old Nathan on his dad’s lap or mine, or finding them all in a big “puppy pile” playing video games. Our youngest, Adam, says, “My friends never sit on their mom’s laps. Isn’t that weird?”

RITA: My oldest, who was an early preemie, had major developmental delays that mimicked autism. She would’ve been diagnosed with autism if she had been born full term. The very day I received that news, I whole-heartedly dived into AP. Before that point, I was kind of wishy-washy. It took a long time to build that trust and connection with her, but today, I credit AP—along with various therapies by AP-friendly professionals—for helping her overcome her challenges. It’s validating, Margie, to hear your story. Is there anything else you’d like to share?

MARGIE: Recently, I’ve read a lot of parents online who have left AP. Most claim that AP parents are too militant and flip out if people stray from [API’s] Eight Principles. The parents that make these claims can scare off new moms who are maybe only breastfeeding and want to find out more, or can’t get a good night’s sleep but feel wrong letting their baby cry. I hope that parents think about these things before they make that [judgmental] comment to a new mom.

Love is the Color of a Rainbow: An Interview with author Kathy Parra

API interviewed author Kathy Parra about her children’s book, Love is the Color of a Rainbow.

Tell us about your book. What was the inspiration?

loveisthecolorofarainbow (202 x 261)Love is the Color of a Rainbow is about Willow, a little girl who has been blind since birth. When she hears pit-pats of the first summer rain, she quickly encourages her Mama to go outside. Mama shares all the colors of a rainbow with Willow through nature, and there Willow experiences that “love is the color of a rainbow.”

When I was in the 6th grade, the teacher asked if anyone wanted to assist with the special needs students. I raised my hand and said, “Pick me!” I was paired up with many children, including a girl I will call Willow, who had been blind since birth. Each day I went in to assist her with Braille reading.

One day, out of the blue, Willow took out her pear from her lunch bag and said, “I wish I knew what my pear looked like. Kathy, what does a pear look like?” I started with telling her that it’s green on the outside, and she said, “What does green look like?” I knew then and there I should take her in nature to share what the pear looked like, so I took her under a beautiful mulberry tree in the schoolyard. As she stood under the tree, I took her hand and let her feel the green leaves, and I told her that these are leaves and they are green, and it is the same color as the outside of the pear. “Oh, it is smooth-warm,” she said. Then I ran her hand over the branch, which would be the sense of the stem of the pear, and I said that this is the stem and it is a brownish green. “Oh,” she said, ”this feels smooth yet strong!”

I was excited that she was associating the feel-sense of what I was sharing, putting feelings to the colors. Then I took her to the sand box and ran her fingers through the sand, and I told her the inside of the pear it a soft white color, yet as you bite into the pear, there is just a bit of grit. She ran her fingers through the sand, then taking a bite of pear, she said, “Oh, it feels like life, like it has energy; when I feel the sand and then bite the pear, I feel life-energy!”

Willow quickly began to associate most everything in her daily life with a feeling for a color. She even made up her own colors! Willow often told me I was like a lot of colors put together, saying that all those colors were love. In that short amount of time that we spent together, I was grateful for her friendship and she for mine.

In addition to that experience, my mother encouraged me as a child to be in nature as much as I wished, and I had my own garden at age four, growing various vegetables and such. I took delight in being in the dirt, so to speak. Today I am the mother of three amazing children–all girls, aged 13, 18 and 21. They were an inspiration for me and continue to be so; they have been my greatest teachers. I am honored and blessed to be in the presence of such wisdom.

 How will this book benefit families?

The book has been shared with many families from across the globe, and the response received back has been more than heart-warming. Notes have come in to share things like, “Thank you for your book; it gave me a an opportunity to share with special needs children in such a unique and beautiful way.” Or, “Let us all remember the childlike sense of wonder in this way as we walk through nature.” Many yoga teachers have shared the book to create a sense of oneness.

I believe that this book provides unique ideas about how to be with one’s child in nature in very special ways, perhaps ways that will allow each of us to slow down, take a moment and ponder ideas like: How does a tomato feel, or what does the color blue feel like? Encouraging parents to “just be” for that moment in time with their children can make all the difference in a child’s life. Fostering a parent/child interaction on a nature walk, and in so doing empowering children through their senses in nature, is a wonderful way for children to understand their relationship with earth as interconnectedness, that with nature we are one. It is no secret that children who engage in nature experience less stress, better concentration and increased creativity.

What are your views of Attachment Parenting International and what API is doing? How does your book work within our mission statement?

The journey into motherhood began for me long before conception. Then came breastfeeding, cosleeping, choosing alternative healing/health, shopping in local markets, choosing to unschool the girls so that life is their curriculum, and practicing all of the principles shared by API. I applaud API for continuing to encourage parents to create strong family bonds with their children, for our children are the future gateway to the new world of being. Let us listen to our children, learn and grow from our children, and let our children be children. If we can do this, not only will we have a future generation of children who know themselves and all that surrounds them as a unity, a oneness, but it will also rekindle the childlike sense of wonder within ourselves.

Anything else you’d like to share?

As I share in the opening of the book, “When we look through the eyes of a child, the world becomes what it always is and has been.”

Where can readers find more information?

My website is www.kathyparra.com.

 

Acceptance

By Shari Adelson-Pollard
**Originally published in the Fall 2007 Special Needs issue of The Journal of API and published on TheAttachedFamily.com in August  2009

Brandon, the author's son
Brandon, the author’s son

When I was young, I would sometimes join in with other kids who picked on those who were different. In my fifth-grade class, there was a girl who had a neuromuscular disorder. Her name was Michelle; she was a small girl, shorter than the rest of us, with long brown hair. We made fun of the way she walked. Then in junior high, a boy who was mentally retarded rode our school bus. Every day, the kids would tease him, throw things at him, and mimic his speech. He tried to ignore them, but you could tell he was really hurt by it. He would sit in his seat and keep his head down.

I wish I could say I increased my acceptance of people with disabilities over the years. But my attitude as an adult still left much to be desired. I clean houses for a living, and one of my clients has a teenage son who has a mental disability. I would dread the days that he was home from school because he would want to tell me all about his Yu-Gi-Oh card collection, and he was always afraid I would vacuum up his beloved Legos. I would have preferred to avoid his company.

I had similar feelings for the young woman with a mental disability who works at our grocery store. I’m ashamed to admit that I used to dread her carrying out my groceries, because she would repeat the same story several times. And I was in too big a hurry to hear what she was saying.

My Son…with Down Syndrome

Then I became pregnant with Brandon, my fifth child. Things seemed normal at first. I refused all prenatal testing, even though I was 38 years old. I felt that nothing a test could tell me would matter or change my idea of having a baby.

But toward the end of my pregnancy, something seemed different. Maybe it was because I had suffered a tubal pregnancy six months before and was still skittish, or because I didn’t feel as much fetal movement as I did with the others. Or maybe it was mother’s intuition. Out of curiosity, I started checking websites for information on Down syndrome. Looking back on it now, it gives me an eerie feeling that this diagnosis was the only thing I ever researched, because when Brandon was born, he was diagnosed with Down syndrome.

During those first hours following the diagnosis, I was full of fear of the unknown. I was angry, sad, hurt, and felt lots of self-pity. Then of course, I wondered how this would affect my other children and how they would react to their new brother.

The day I came home from the hospital, the early intervention team called to tell me about physical and occupational therapy. I was astonished at all that was expected of my little son, and of me. I am the mother of four other boys; I thought nothing could shock me anymore! But I realized my new beautiful son was going to need our help and I was determined he would get it. This was my first step towards acceptance.

A Change in Heart

Two weeks after Brandon was born, my oldest son, Conrad, graduated from high school. In a class of more than 400, it is hard to stand out as one of the best. Only three students were chosen to give speeches during the ceremony. One of the boys chosen had Williams Syndrome, a chromosomal disorder. I cried through his whole speech. Afterward, he was given a standing ovation. For the first time, I thought to myself, “Brandon is going to have a bright future with plenty of friends.” This was another important step toward acceptance of Brandon’s diagnosis.

My next steps were easier to make, because of the wonderful support I received from my family, just as I had my whole life. When I had had marital problems and divorced, my parents opened their home to me and my children, letting us live with them until I was able to get back on my feet, which was a great help and comfort. Then I revisited the website I had sought out while pregnant, the BabyCenter.com Down syndrome bulletin board. Interacting with other women in my situation enabled me to relax a bit and feel more confident.

Remorse and Healing

As I took even more steps toward acceptance of Brandon’s diagnosis and the changes it brought into my life, I regretted my previous attitude toward people with disabilities. I still feel bad about my behavior toward those who couldn’t help their circumstances in life. I wish I could go back and change the way I treated them. But all I can do is pay attention to how I react and treat people now.

Now, when I see the young woman at the grocery store, I take the time to listen, to ask her questions, and to make conversation with her. Now, when my client’s teenage son is home, I talk to him about his cards and ask him about his baseball team, and I really enjoy our chats.

These days I make a point to be friendly to other families who have a child with a disability. During a recent trip to Disneyland, while waiting in line for the monorail, I saw a child with Down syndrome in front of us. I started small talk with the parents, instead of looking away. Turns out they lived in our area, and we became friends. Acceptance has its benefits!

Sibling Acceptance

Best of all, I’ve seen how accepting Brandon’s brothers are of him. My two younger boys don’t even notice a difference in Brandon. My older two boys are already protective of him. My son Corey always says, “Brandon, you’re going to be the smartest person ever with Down syndrome.”

I’m confident that Brandon’s brothers will not have the same narrow views that I used to have regarding people with disabilities. I think they will be the kind of boys who will refuse to join in with the teasing so common in our society. I think they’ll be more welcoming to the hard-working individuals who carry their groceries.

Hope for Other Parents

I want to offer hope to parents facing a new diagnosis of Down syndrome. I was and am where you are, and where you will be. Remember, the broken heart is in you, not your child with Down syndrome. Within a short time, your broken heart will transform into a heart filled with love and amazement at this incredible person. You, too, will find the peace of acceptance.

Responding With Sensitivity
It is preferable when speaking about a child with a disability to put the child before their physical or mental characteristics. This makes their identity as a child most prominent. For example, one might say “a child with Down syndrome” rather than “a Down syndrome child.”

Welcome to the Twilight Zone: A Boy Brought Back from Autism

By Avril Dannebaum, co-leader of API-NYC

Paint strokesMy son woke up that summer morning and came to me. His light blue-green eyes were clear, and he looked healthier than I had seen him in a long time. Something was different with my three-year old.

“I want to paint today.”

I paused in shock at his request. It was a bright morning, just one of many beautiful days we’d had that summer in 2000. But a feeling of unreality washed over me. With those simple words, I had entered the twilight zone.

For almost two years before that day, my son hadn’t spoken much at all, hadn’t searched out my eyes, hadn’t really done anything that a normally developing child would do. He had lived in a separate universe, a never-never land of lost boys and lost parental dreams. My little cabbage boy.

Suddenly, as spectacularly as my son had disappeared, he was back with me. I didn’t react. There were no big moments of hugging or kissing him. In general, he didn’t care for demonstrations of affection. So I didn’t fuss. Frankly, I didn’t quite believe what was happening. My husband was getting ready for work, and so I just went through the usual motions of making breakfast, while wondering if this would last. Wondering if I was dreaming.

I got out his paints and his easel. What had happened? What had brought my son home to me?

A Leap of Faith

The day before we had taken a train trip upstate to Brewster, New York to a DAN! (Defeat Autism Now!) protocol doctor  – the very same doctor who had been mentioned in Karyn Seroussi’s book, Unraveling the Mysteries of Autism and PDD.

About DAN!

Defeat Autism Now!™ (DAN!) is a project of the Autism Research Institute, a group of physicians, researchers, and scientists committed to finding effective treatments for autism. DAN! does not regard psychotropic drugs as the best or only means of treating autistic patients. More information can be found at www.autism.com/dan/index.htm.

My son had acted up on the train, screaming and yelling, hurling his body back against the stroller I’d confined him in. Being on the autistic spectrum this was standard operating procedure. I was glad that the train compartment was almost empty because it cut down on the amount of dirty looks I would receive for having a tantruming preschooler. Finally, after our taxi ride, he settled down in the doctor’s office while we waited. He had found a basket of fast food restaurant toys and he was content.

It never failed to amaze me that a child so nonresponsive to his mother and father, never hearing us and never searching us out, could spot a favorite toy from yards away and make a bee line to it. Yet I found that reassuring somehow – that even though he didn’t care for us, there was something in his universe that he loved: Blue from Blue’s Clues, Thomas the Tank Engine, Elmo and his other friends from Sesame Street. As long as he loved them, he wasn’t alone. They reached him where we could not.

The doctor recommended that we use twilight sleep so that my son wouldn’t struggle during the prolonged blood draw necessary for all the testing we needed to have done. And it would help because after taking the blood we’d be doing an IV push of Secretin and vitamins, which would also take more than a few minutes.

It took me and two nurses to hold down my son’s small yet very strong, three-year-old body. He screamed and struggled until the sedative took effect. It broke my heart, but I had had two years of getting used to being heart-broken. I was so used to it, and yet it still hurt.

My mother, 68 years of age, a vivacious woman who talked a lot but rarely gave any thought into what she was saying, lived only a few miles away and was there to pick up my very groggy son and me after the appointment. My son was very much under the effects of the drug we’d used to calm him and I had to be careful that he didn’t hurt himself as he flopped around. Thank goodness for my mother driving us back to the city because I’m not sure I would have been able to handle the train trip back. My boy went to sleep as soon as we got home.

And then it was the next day, and a child I hadn’t seen for two years was back with me. I didn’t think miracles happened just like that. Hadn’t the government and various studies debunked the use of Secretin? Maybe it had been the vitamins?

In the next few weeks, we spent all of our savings and maxed out our credit cards with this doctor, on the basis that the two years we had stuck with mainstream doctors and therapies had done little to nothing for our child. Time was passing. Our son’s childhood and potential were speeding by us.

Our leap of faith had paid off. Eye contact, and speech, but more – much more: someone was home again in there. Someone who knew us, knew that we loved him and cared for him.

The Food Connection

In Attachment Parenting (AP), very often a family will be confronted with a professional’s opinion that goes against what is in their hearts. Doctors will tell moms to quit breastfeeding and introduce solids. They will tell families not to share sleep, because it will permanently hurt the child. They are told to let their child cry-it-out.

Our doctors had ignored our son’s constipation and diarrhea for two years. Earlier that year his bowel movements had been so acidic that they had left welts on his upper thighs and testicles. We’d had to change him in the bath tub while he screamed in pain. And once, after having popcorn, our son’s constipation had reached the point where he couldn’t stand up straight or walk. It had taken two baby enemas to clean him out.

Our mainstream doctors hadn’t seen a connection between our son’s bowel problems and his Autistic Spectrum Disorder (ASD). Everything I had been told about it being solely genetic and irreversible, except through behavioral modification and heavy-duty drugs, was a lie. Here I had proof that ASD is reversible: Our boy was back, at least as long as he avoided gluten, casein, soy, and corn.

And so we took our first steps on a trip through a world where doctors, public health administrators, and even some politicians lie to protect themselves from the truth: Genetics is the gun, but environment is the trigger.

Our son’s dramatic response to Secretin had shown us that symptoms of autism are reversible. Eventually we found Secretin to have diminishing results, and it was his diet which kept him from drifting away from us.

The Vaccine Connection

Two years later, he had his first biopsy and colonoscopy and was found to have Lymphonodular Hyperplasia of the colon – a condition associated with chronic measles activity from the MMR vaccine.

Our Son Returned

This journey has been a long one, filled with twists and turns and even a few dead ends. I didn’t know, couldn’t know, if after losing two years of his development whether he would ever be fully normal. But he was talking, making eye contact and the stimming was gone, and that was good enough for my husband and me to see that our son was still there and had never been completely lost.

What is Stimming?

“Stimming” refers to repetitive, self-stimulating movement, such as through flapping, tapping, scratching, or rocking.

Where would we be now if we hadn’t listened to our hearts and tried alternate therapy for our son? I was grateful that I had a support community of parents who were of a like mind about AP. They stood by and encouraged me to believe that something more was going on with our son than genetics alone. They were there for me to help me parent my child gently even when he was screaming and tantruming every day. They helped me through the pain and anguish of my own son not knowing his mom anymore. Thank goodness for those parents who wouldn’t let me give up hope.

For More Information

Rescue Generation: http://www.generationrescue.org
Safe Minds: http://www.safeminds.org
NAA: http://www.nationalautismassociation.org
Autism Research Institute: http://www.autism.com
ANDI: http://www.autismndi.com
A-CHAMP: http://www.a-champ.org
Heavy metal toxicity: http://www.diagnose-me.com/cond/C15891.html

Changing the Course of Autism by Dr. Brian Jepson
Healing the New Childhood Epidemics: Autism, ADD, Asthma and Allergies by Dr. Kenneth Bock
Children with Starving Brains by Dr. Jaqueline Candless
Unraveling the Mysteries of Autism and Pervasive Developmental Disorder by Karyn Seroussi
Special Diets for Special Kids by Lisa Lewis
Evidence of Harm by David Kirby
The Child with Special Needs by Stanley Greenspan
Is This Your Child? by Dr. Doris Rapp

An AP Approach to Autism

By Melissa Hincha-Ownby, editor of the API Speaks blog

Melissa Hincha-Ownby
Melissa Hincha-Ownby

Like many families that I know, my husband and I just sort of fell into Attachment Parenting. When our son was born in 2001, we found our parenting style to be in line with Attachment Parenting concepts. As we added baby number two in 2003, I was introduced to the challenges of parenting two children. Of course, we kept with the Attachment Parenting style because it helped address some of these challenges (can anyone say sleepy mom of two?).

Fast forward a couple of years, and our Attachment Parenting style helped us with one of the biggest parenting challenges that I think we’ll ever have to face — autism.

In November 2006, the day before my daughter’s third birthday, she was diagnosed with autism. Technically, her diagnosis was autistic disorder. At this point, there are five different diagnoses that fall under the pervasive developmental disorder umbrella and autistic disorder was one of these.

After hearing those words, “Your daughter has autism,” I began to read everything I could get my hands on. A lot of the literature focused on behavior therapy as the gold standard with regards to helping a child with autism reach their potential. I was a little concerned that the behavior therapy being proposed was not very child-friendly but also concerned that this type of therapy may be needed. Although my daughter’s delays were very evident, I stayed the course with an Attachment Parenting approach and searched for other options. Continue reading An AP Approach to Autism

From Heartache to Hope: Interview with Leisa Hammett of the Autism Society of Middle Tennessee

By Rita Brhel, managing editor and attachment parenting resource leader (API)

From Heartache to HopeThe personal stories of families and individuals affected by autism in the beautifully photographed book, From Heartache to Hope: Middle Tennessee Families Living with Autism by Leisa A. Hammett, were an amazing read.

The book follows 18 families in how they have struggled with one or more family members receiving a diagnosis of autism and how they moved literally from heartache to hope — with the parenting support offered by their local Autism Society of Middle Tennessee, USA. This book illustrates the vital importance of unconditional attachment between parent and child in a circumstance where autism exists.

Leisa, a mother of a child on the autism spectrum, offers more insight into why this book came to be.

RITA: How did you first became interested in helping other parents of children with autism?

LEISA: I’ve always been a flag waver — guess I was born with one flapping in my hand. And then, after serving as a social justice reporter covering poverty, homelessness, addiction, etc., I was moved to use my life, my faith, my gifts, what I possessed, to work for change. That time in my life, my mid-20s, was catalytic. So, in many ways, it’s a bit ironic that I ended up being the type person with circumstances and challenges about whom I used to write. Also, ironically, I’d finished up a volunteer stint as my local La Leche League chapter’s librarian and had promised to do the same for Attachment Parenting International in Nashville, where I live.

But that’s when the “A bomb” dropped. Resources, time, and energy, of course, had to be redirected. Continue reading From Heartache to Hope: Interview with Leisa Hammett of the Autism Society of Middle Tennessee

Jackie’s Story: Growing Up with PDD

By Kandace Wright

**Originally published in the Fall 2007 Special Needs issue of The Journal of API

Jackie
Jackie

Jackie informed me yesterday that when she has her own children she will never tell them “no.” Never. I smiled and wished her luck with that. Then, today after school, she informed me that she thinks she might sometimes need to tell them “no.” Sometimes.

Jackie is a healthy, mostly happy 11-year-old child with special needs. What makes her unique is that she has pervasive developmental disorder. She has some autistic features mixed with a possible mood disorder, though some days I wonder if her mood swings are more related to her approaching coming-of-age. I do not believe there can be anything more emotional that impending menstrual cycles for a young pre-teen. Sigh. When did I become the mother of a pre-teen?

About PDD

The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before three years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings; and repetitive body movements or behavior patterns.

Autism is the most characteristic and best-studied form of PDD. Other types of PDD include Asperger’s syndrome (a high-functioning form of autism in children who generally have high IQs), Childhood disintegrative disorder (in which a child may develop fairly normally until 18 to 36 months and then begin to regress, especially in speech and social interaction), and Rett’s syndrome (a neurodevelopmental disorder found almost exclusively in females and characterized by normal early development followed by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gut-associated lymphoid tissue abnormalities, seizures, and mental retardation).

Children with PDD vary widely in abilities, intelligence, and behaviors. Some children don’t speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.

Practicing Attachment Parenting has enabled us to be more responsive and more intuitive to Jackie’s needs. My husband and I can often sense what she needs from us and her environment, which is key to our preventing meltdowns and struggles.

We also feel strongly that we help her by having a support system for us. We rely on a support team including family, friends, and people from the school system who work with Jackie. Sometimes we need respite care, an extra set of hands, or a parents’ night out. Our sitters are well trained to work with children like Jackie, and all of our kids look forward to the special playtime. We enjoy coming home relaxed and rejuvenated, and know we are in a better place to cope with any challenges that might arise.

Different is OK

One of the hardest challenges with raising a special needs child is trying to keep people, including us as her parents, from attempting to force her into being a “typical” child. Jackie is different. She will always be different, and I celebrate that difference.

That said, it’s not all roses. There are some thorns. We have struggled with defining what Jackie needs in her school environment. We have also struggled with therapists and psychiatrists who have tried a one-size-fits-all approach to Jackie’s challenges, including the use of medications.

A Trial of Medication

We resisted using any medications for a long time, despite the pressures. When we had our fourth child, things really bottomed out for her. She was in such emotional pain. We decided it was unfair to not at least investigate and try medications. We started out with high hopes, but soon realized that our daughter had become a proverbial guinea pig.

We tried half a dozen medications over the course of 18 months. I know some children receive relief from medication, but Jackie never did. In fact, they had a negative effect on her system and she seemed even worse. It was heartbreaking. We ended the experiment and weaned her off all medication.

Jackie hit a new low while weaning from the medications. Then, after a month, she seemed herself again. She became more in control of her emotions and behaviors, and her humor returned (something I hadn’t quite realized how much I’d missed). She seemed settled. I cannot quite explain it, but she just seemed more like the daughter that we knew and loved – quirks and all.

Two Steps Forward, One Step Back

It’s been about six months, and Jackie continues to improve. She takes two steps forward, then one back (sometimes three back), and then she makes progress again. She was recently able to transition from the special needs school bus to the regular school bus, which was an important milestone for her.

No matter how hard we attempt to prepare her to be confident with her special needs, as she gets older there will always be the pull to be more like a “typical” children. She will always want to be “normal.” We embrace Jackie as she is. We have taught all of our children that we are each unique, and we encourage them to be accepting of others, even those who face challenges that make them difficult to deal with.

Where Children Learn to Communicate

By Dr. James MacDonald, founder of the Communicating Partners Program

**Originally published in the Fall 2007 Special Needs issue of The Journal of API

Teaching girl to readIt is now clear that a child can learn in every social interaction, anywhere. The more a child interacts, the more the child will learn, communicatively and cognitively. The key factor is for the child to have many one-on-one partners who act and communicate in ways the child is capable of and interested in.

While this is true for typically developing children, the exciting finding is that it is also true for many “late-talking” children such as those with Autism, Down syndrome, apraxia, and other delays.

What is Apraxia?

Apraxia is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently, and not due to weakness or paralysis of the speech muscles. Developmental apraxia of speech (DAS) differs from developmental delay of speech, in which a child follows the typical path of speech development but more slowly. Children with DAS may have difficulty putting sounds and syllables together in the correct order to form words, or may incorrectly use the varying rhythms, stresses, and inflections of speech that are used to help express meaning.

Many parents and professionals act as though a child, especially one with delays, will only learn to talk with trained professionals in therapy and school. This is a myth that can keep a child from his most important teachers – his family.

Even if a parent has only one hour each day of one-on-one time with his or her child, she still has about 11 times more interactions with her child than professionals who see the child for only one session per week or are managing a classroom full of children. The difference is much more pronounced in the early, most vulnerable years, when parents often have much more than one hour each day with a child. The difference is even greater than 50 times more than direct contact than with professionals (given several hours of contact at home a day). And since children can learn to interact and communicate in every one-on-one interaction, parents clearly have an enormous advantage over professionals in having developmental impact on children.

Even so, many parents believe their child will learn to communicate in the tiny proportion of time they spend with professionals. They will fight hard for an extra half hour of therapy and yet ignore the power they have in their many hours with the child.

Parents usually have very little training as to how they can effectively help their children socialize and communicate. Consequently, it is clear that professionals will have much more developmental impact on children when they educate parents in effective natural teaching strategies.