To connect with other parents whose children have special needs or face challenges, join the Wildflowers group on Root & Sprout's social networking site, Grow Together.

by Debbie Yost

When my husband and I received the diagnosis our daughter had Down syndrome, one of the first things I thought about was her speech. I did not know much about Down syndrome, but I did know people with Down syndrome often had a thicker and sometimes difficult to understand speech pattern. I wanted my daughter’s speech to be clear. As a result, speech has always been one of my biggest areas of concern. Today, as my daughter nears her fourth birthday, her verbal speech is not much better than the day she was born. Over the years, we have traveled many roads in our search for communication with our daughter. 

In the beginning, we introduced sign language to our daughter. Studies show sign language can increase a child’s verbal expressions, and it gives a young child a means of communication when they have not yet mastered the ability to talk. Our daughter never learned the number of signs that many children do; however, she had enough of a vocabulary to make life a little easier. Unfortunately, we quickly began to see some complications with sign language. 

First, not everyone knows sign language. If our daughter is outside her immediate circle of family and friends, she would need us to translate for her. This could increase the level of frustration if we were not there to help. Second, even we don’t always know what her signs mean, again causing frustration for everyone involved. Finally, we believed our daughter was beginning to rely on sign language and was not making any attempts at vocalization. As a result, we began to look for a new road to follow. 

When our daughter entered preschool, her teacher recommended the Picture Exchange Communication System (PECS). PECS was developed in 1985 to help non-verbal individuals with severe intellectual disabilities communicate. It was developed with educators, resident care providers and families in mind, making it a simple, portable and inexpensive program. A majority of the individuals who use this program have autism; however, it has been used with individuals of other diagnosis and genetic disorders such as Down syndrome.  

PECS requires a lot of hard work and dedication on the teacher’s part. Getting past the first phase can take months, or even a year. Our daughter has been in Phase I for about 9 months and is just now showing signs she will be ready to move on to Phase II. Once the first phase is mastered, the individual will fly through subsequent phases, similar to the explosion of language many parents see when their child finally discovers how to talk. However, the benefits of this program are well worth the effort, because:  

it can be used in a variety of settings; 

it teaches individuals to approach others to initiate conversations;

according to the Journal of Applied Behavior Analysis, PECS increases the likelihood of speech; 

if verbal speech is not medically possible, the individual can still communicate with others; 

it uses common pictures, so even those unfamiliar with the program can communicate with the individual; and

it can be used by individuals who don’t have the physical ability or motor skills to properly use sign language. 

Although we have been very happy with the progress our daughter has made in the PECS program, our ultimate goal is still for her to use verbal language. The final road we have embarked on for this purpose is to insist on vocalization. Our daughter will make a grunting sound while either pointing or signing for what she wants. We no longer enable our daughter to request items in this manner. Instead, she must make some attempt at saying the word. It may just be a vowel or consonant sound, but it must be something beyond her typical grunt. Even if she properly signs an item, such as milk, she must attempt to say the word. Our daughter’s vocalization has dramatically increased since we incorporated this into our daily lives. Currently we still have to prompt her, but it is giving her the practice she needs to begin speaking. 

We are far from reaching the end of our journey and are searching for other possibilities as to why our daughter is not yet speaking. We continue to test her for hearing problems. We are exploring the possibility that our daughter may have verbal apraxia, a condition in which a person has difficulty making the proper movements with her mouth and tongue to form speech. We realize that our daughter may never verbally communicate with us to the extent we would like, but we continue to travel the road, taking detours when necessary, until we reach our final destination. 

Debbie Yost and her husband live in the Kansas City area and have three daughters, ages 12, 6 and 3. In addition to raising her own children, Debbie has cared for over 25 infants and toddlers during a five-year period in which she operated an in-home daycare. Debbie closed her day-care doors in June of 2008 and went to back to work part-time. Debbie’s youngest daughter has Down syndrome. Because of her daughter, Debbie has become an advocate for people with Down syndrome to ensure they have the same opportunities to live a full and rewarding life as others. Debbie writes about mothering, family life and Down syndrome awareness on her blog Three Weddings. 

by Michelle Kemper Brownlow

Does this sound familiar?

“My clothes are too scratchy.”

“The lights are making a noise.”

“That smell makes my belly hurt.”  

How about this?

“We don’t pour our drink on our plate!”

“Why can’t you sit still in that chair and stop wiggling?”

“Please stop breaking things! You need to be gentle!”  

Some children simply have quirks that cause small wrinkles in our daily tasks, but other children seem to take discomfort and destruction one step further. If you are experiencing significant friction in your home related to or involving irrational sensitivity to textures, seemingly destructive behaviors, or lack of self-control your child may be battling Sensory Processing Disorder (formerly known as Sensory Integration Disorder).  

Sensory Processing Disorder is the inability of the brain to correctly process information brought in by the senses. Children with SPD are either hyposensitive or hypersensitive to outside stimuli. A child who is not tolerant to physical touch may constantly be crashing into things seeking extra stimulation while the hypersensitive child will avoid being touched or touching anything when at all possible.  

When an infant or toddler is only exhibiting a few hyper- or hypo sensitivities, it doesn’t always lead to a diagnosis of Sensory Processing Disorder. However, having a multitude of symptoms suggests a need for a therapeutic evaluation.  

Some of the symptoms of Sensory Processing Disorder are:  

Resistance to being cuddled or held

Distressed by baths or splashing water

Avoids eye contact

Doesn’t tolerate new foods well

Prefers not wearing clothes

Numerous temper tantrums per day

Significantly late to talk, use gestures, smile, hold bottle, sleep through the night

Frequent ear infections

Craves movement (swinging, rocking, bouncing)

Distressed by simple transitions throughout the day

Frequent head banging or hurting self or others

Unable to be gentle with animals

Does not engage in purposeful play, wanders aimlessly  

Visit this site for a more exhaustive list of SPD symptoms.  

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else." Stanley Greenspan, author of The Challenging Child (1995), uses this analogy to describe the day-to-day struggles within the body of someone dealing with Sensory Processing Disorder. 

If you suspect you may be dealing with SPD, take your concerns to your pediatrician who will set up an occupational therapy evaluation. Upon diagnosis, parents usually experience an “Aha” moment. There is a moment of clarity when the diagnosis explains their child’s obvious lack of control, difficulty concentrating and staying focused during play, and exaggerated reactions to small triggers. Most parents not only feel overly stressed but incompetent and dejected at the same time when dealing with a child who suffers from SPD. Some pediatricians will suggest both parent and child find a psychologist trained in dealing with the stresses SPD brings.  

In her book, The Out-of-Sync Child (1995), Carol Stock Kranowitz says, “Everyone has some sensory integration problems now and then, because no one is well regulated all the time. All kinds of stimuli can temporarily disrupt normal functioning of the brain, either by overloading it with, or by depriving it of, sensory stimulation.” But sometimes normal functioning is disrupted so often that it impedes regular daily tasks like sitting to eat a meal, finishing a puzzle, playing appropriately with friends and/or pets, or being in control in public.  

For optimal results, a child should be diagnosed before the age of seven. Occupational therapy can be an amazing aid when introduced early both to the child and the parent. There are thousands of resources for families struggling with this disorder. Kranowitz has also written a companion book called, The Out-of-Sync Child Has Fun (2003) which presents lively and engaging activities that bring fun and play to everyday situations. Sensory toys, special clothing, activities and self-care aids will make a world of difference to you and your child.  

Sensory Processing Disorder is very difficult for both child and caregiver. But remembering the child behind the disorder is just as frustrated when his body won’t perform appropriately will increase your patience. With some appropriate therapies and some extra time from you, your child can have a normal life and the two of you will share a bond that goes much deeper than scratchy tags.  

For more information, please visit:  

http://www.sensory-processing-disorder.com  

http://www.spdfoundation.net/  

http://www.kid-power.org/sid.html   

Books:  

The Out-of-Sync Child, by Carol Stock Kranowitz  

The Out-of-Sync Child Has Fun, by Carol Stock Kranowitz  

Sensational Kids, by Lucy Jane Miller   

Therapy and Play:  

http://www.specialkidszone.com/  

http://specialneedstoys.com/usa/  

http://beyondplay.com  

 Michelle Kemper Brownlow is a former art teacher turned freelance parenting writer and mommy blogger. Her laptop resides in beautiful Amish Country PA and cohabitates with her husband and three children, one of whom struggles with SPD. You can read her chaos at My Semblance of Sanity.  

by Tracey B.

So you're a new mom? Welcome to the Parenting Club! Your dues are quality of sleep, ever last ounce of sanity, and the chance to pee in solitude for at least a decade. Some of benefits include priceless crayon art, leaping bear hugs, and a newfound ability to kill monsters. 

One especially surprising benefit to joining the Parenting Club is the automatic entry into a multitude of other clubs, as well; my list of clubs is long after having three kids: ADHD Club, Biters Anonymous, Shy Kids Club, Crazy Wild Child Club. 

But the club I'm here to talk about today is the one you join when your child has a physical abnormality, not a club most parents dream of joining, and not a position most parents picture when imagining their “dream baby.” But the fact is, many children are born with physical differences, which, to others, might be considered defects.

My youngest child, my daughter, was born healthy, big, and right on time. Everything about her, from her beautiful eyes and chubby cheeks to her perfectly formed toes and rolly thighs, was perfect. It wasn't until her three-day well-visit with our pediatrician that I noticed the red mark on her forehead. 

"Oh my! She must have gotten her first love tap from a brother! I hadn't noticed that before," I said nervously to the doctor, thinking that she was going to call CPS on me for endangering my newborn. She didn't say anything about the bright red, heart-shaped mark on Corinne's head and continued with the check-up. It wasn't until I got home that I noticed the "owie" was actually a birth mark.  

"Oh, how cute! A teeny, tiny heart birthmark on her hairline! Very sweet and perfect for a little girl, especially since it will be covered by hair when she grows up." I really was not concerned by it, as it was a tiny, light pink mark on her otherwise perfect body. 

It didn't take long for that tiny mark to bloom and grow into a 3-dimensional strawberry hemangioma. It also didn't take long for another flatter, but wider, hemangioma to appear on her back and several tiny dotted ones on the back of her head. Suddenly my perfect newborn had noticeable "flaws" that were the subject of many conversations: 

"Oh! How'd she get that owie?" 

Poking repeatedly, "Hey, does this hurt her?" No, it didn't hurt her, but if it did hurt, do you think poking it would be a good choice? 

The stares were . . . difficult. I understood; I really did. I was used to her birthmark and could see only my gorgeous little girl with a brilliant smile (even at such a young age!). But on her tiny, bald head, it was hard not to notice and do a double take. 

I was concerned about my baby’s birthmarks that were growing so quickly they were cracking and bleeding, especially after researching them online and discovering qualifying markers for potential problems: more than three, all on the same side of the body, two were large, and one was noticeably growing and forming scabs. My pediatrician tried to assure me that they were okay, but I insisted on seeing a dermatologist. We were referred to The Children's Hospital.  

Nothing can make you freak out faster than realizing your baby may very well have something seriously wrong with her. But even the possibility of surgery on my infant didn't divert my attention from the truly sick children at the hospital. Even if Corinne needed surgery or treatments, even if she had a tumor that grew to crazy sizes, she wasn't going through chemo. She didn't have an incurable, unknown disease, as some of those precious children in the waiting rooms had.   

In the end, Corinne didn’t need surgery. Her birthmarks eventually stopped growing, and I have even seen a slight change in their sizes, color, and shape, which means that they are going away. Most hemangiomas are gone by age five. Corinne rarely gets comments now that her hair covers her forehead and her back is usually clothed. 

I am now a permanent member, though, of the Parents of Children with Hemangiomas Club. Actually, it has opened a few doors for me. I feel more confident talking to other parents with children who have physical abnormalities. I make sure to compliment how beautiful other kids with birthmarks are. Corinne knows I find her birthmarks a "lovely pink” and that she’s “such a lucky girl." Her birthmarks have exposed my entire family to the experience of knowing how it feels to be on the other side of the stares. My boys, especially, have had repeated conversations about the differences in all people: some walk, some roll, some see, some feel, some hear, some sign. They have learned that differences don't make someone inferior or superior. For that lesson learned, I am truly thankful to be a member.

Tracey writes at Just Another Mommy Blog and contributes to Chicago Moms Blog.

image courtesy Tracey B.