It’s Ok to Cry
(My Journey with High Order Multiples)
By Riley D. Smith

            For several years now I have wanted to put into writing my personal journey as the father of quadruplets.   It seems that I just never found the time, or, more likely, didn’t know what I really wanted to convey.
            I actually did, over the course of the last eight years, start to write several times, but my attempts (for whatever reason) were quickly blocked or rapidly bogged down in the details of this hectic life we lead! Finally I decided that what I really wanted to talk about is what I personally went through, how I coped (or didn’t cope) with numerous issues, and how I might help other fathers (and fathers-to-be) meet and understand these challenges. Along the way, I hope that I might even learn a bit more about myself and the “how and whys” that life as the father of high order multiples (HOM) has changed me and the way I view myself, as well as life in general.
            As those of you who have taken this journey know, there is much I am leaving out. (Editors Note: FOCUS edited even more for space, concentrating on the special needs of the quadruplets and omitting details about the fertility and high risk pregnancy issues. Contact FOCUS for the unedited version.) I don’t believe that a person can really cover all that parents of multiples go through in anything less than a novel, but my goals here are pretty specific. Although I certainly do not want to scare new parents (or parents to be!), or add any worries, I am going to be very open and honest about what I wish I had known prior to having multiples, how I felt after we did, and how I feel at the current point in my life. I also wish to offer a disclaimer early in this article. Moms: I am not trying to leave you out. I am not trying to downplay your importance. You all hold a place of unbelievably high esteem in my eyes. Mothers of HOM are, I honestly believe, chosen by a higher power because of very special qualities they possess that are required from an HOM mother. However, the perspective of a father is, as I have discovered, so very different from that of a mother in so many ways.
            My wife Cindi and I tried for nearly six years to have children and had two heart wrenching miscarriages. As a husband and partner, I never realized just how physically and emotionally traumatic a miscarriage is for a woman. Although I obviously had a fairly important role in the creation of that small life, the attachment I felt was far removed from my wife’s. With both miscarriages, although I was certainly disappointed, I did not have the deep emotional distress that I felt I should have had. I felt guilty when I saw just how deeply my wife, my partner, was hurt, and that I didn’t feel the same level of loss. The only thing I really could do at that time was be there for her, to listen when she wanted to talk, and to support her when she didn’t want to talk. Encouraging that line of communication was important for me since it let me actually do something.
            The whole infertility experience is another article altogether! We finally resorted to medications after trying the ‘regular’ way to get pregnant. I remember the day that we went to see our doctor so clearly. We were excited because we had done an at-home test and were pretty sure she was pregnant again. As we both watched him perform the ultrasound, I asked “So doc, do you see a heartbeat?” and he replied “Yes, actually I do. And here is a second. It looks like here is a third. And I believe there just might be another one, but it is a bit to hard to see right now.” Stunned silence. Triplets, maybe quadruplets? You are kidding, right? Nope, not kidding at all. I don’t remember if we had our initial discussion about what to expect and any options that day or at the next visit. I do remember leaving the office with a really funny grin and not really knowing quite what to make of the news. We went to a nice open air restaurant on the river (in Jacksonville, FL) and had lunch. We had to tell somebody, so we told the waitress. I had a beer. I then had another. I was feeling joy, relief, anticipation, and a little fright. We had not expected this news; I don’t think we ever really discussed multiples (if at all) prior to or during the treatments and stuff. One open discussion you should have when seeking fertility treatment (prior to getting pregnant) is the very real possibility of having HOM as a result. Included in this discussion, both with your spouse and her doctor, should be at least a conversation about the possibility of premature births. It might or might not affect your decision to continue, but I believe it should at least be addressed.
            Cindi was put on bed rest at 14 weeks and hospitalized shortly after. Even with all the intervention, the babies started coming at 25 weeks. I barely made it to the hospital to see her being wheeled off to the delivery room for an emergency C-section. The babies were delivered in short order after that, 1 minute apart. Faith was followed by Hope, then Taylor (boy), and Lauren. When the nurses quickly held them in front of our eyes before rushing them off to the NICU (Neonatal Intensive Care Unit), my emotions were still in turmoil. I was proud, scared and maybe a little lost. I just did not quite know what to feel. It had all happened so very quickly. One of the nurses took some Polaroid pictures right after the babies were stabilized. I remember thinking that they reminded me of little featherless birds, and, to be honest, they were not much bigger than that. They looked so tiny and helpless. I am still filled with such mixed emotions when I look at those pictures today because we (and they) just did not know the long days, weeks, and months that were ahead. Even though, as I listen to them playing in the background right now while I type, I can smile knowing we are all still here and healthy.
            We spent the next four months living one day at a time. Sometimes we were not even looking further than one or two hours ahead. We were told of the “roller coaster” ride that our stay in the NICU would be. Gains and triumphs were often measured in one or two of the kids gaining a gram of body weight. Sometimes “good” was an increase in their feedings by one or two milliliters. Many days were considered “good days” just because nothing bad happened, and we “held what we had.” It always seemed that the bad came more often and in larger packages. My wife and I kept a diary in a spiral notebook the entire time we were there. It served several purposes: tracking all that was going on, who people were, phone numbers and other vital data and providing an outlet for our emotions while we sat quietly in a rocker next to one child or another (the four were usually not next to each other). We were so overloaded with information that without that notebook we would have been lost. It became our confessional, our personal repository of thoughts and emotions. The NICU staff was very generous, letting us stay close and we learned how to stay out of the way and “live quietly.” Dinging chimes, the soft hissing of ventilators, the hushed conversations of nurses going about the job of watching over these precious lives around the clock; all of this became our very existence.
            One of the hardest things as a new father was to accept that there was absolutely nothing I could do to physically or mentally help my little babies. Of course I was doing everything I could for Cindi and that helped some. But when it came to those little sub-two pound babies, I was helpless. Not a familiar or a good place for me and very nearly impossible to accept. I did discover that by arming myself with information on every little (or big) thing that happened, I could at least understand and have some gauge to judge things by as they occurred. Comfort, for me at least, came hand in hand with knowledge.
          During our stay in the NICU, we experienced many common preemie complications: infections, bronchopulmonary dysplasia (BPD or chronic lung disease), various eye issues; brain bleeds, and some stuff that eludes me at the moment. Taylor suffered from retinopathy of prematurity (ROP) and lost his vision; he also had necrotizing enterocolitis (NEC) and required major abdominal surgery when he finally made it to two pounds. I’m not trying to scare anyone, just showing how much these little preemies can overcome. The only thing we could really do was pray, and we did a lot of that! Our church was a big support, and our pastor helped us focus on our four precious children; she saw life and helped us take our first tentative steps towards trusting in the future.
            The girls all came home within a week of each other after three months. Taylor followed a little less than one month later. Two were on heart monitors and one needed oxygen. Our nights and days were filled with feedings every three hours, changing diapers constantly, monitoring health, doctor visits, on and on. Our days and nights ran together, and we were constantly sleep deprived. But the kids grew better and bigger. At one, the girls all needed glasses. Trying to keep glasses on three one-year-old babies was an adventure in itself! Their immune systems were so fragile that for the first year, we lived with them in isolation.
            All four were at risk for developmental delays and other disabilities. The girls have minor vision issues and varying degrees of cerebral palsy (CP), but they are all quite verbal and ambulatory. Taylor’s biggest issue was his vision; his retinas just sustained too much damage due to the ROP and were nearly entirely detached. It was difficult to accept that my little boy was blind. He was also quite delayed developmentally, compared to his sisters, because of the other complications. I spent many hours just looking at him, thinking of so many things he and I would not be able to do that “normal” fathers and sons do. My relationship with my own father was great. I worked for him for many years. He taught me to drive, to fish, how to smack a baseball, how to shoe a horse (he was a true cowboy), and we camped together. But I realized that the things that a father really teaches and shares with his son were things that don’t require sight. My dad taught me honesty, the importance of hard work, ethics, and just how to be a man. Taylor will have all of that and more. Our relationship is really not much different than any other father and sons. I know that the most important thing is that Taylor is still here. He is a healthy, rambunctious 8-year-old who loves to wrestle, listen to the radio, and (for whatever reason) listen to the daily news on the television. We adults could take a lesson in the simplicity of true happiness from him.
            Over the course the next six years, we transferred twice. I retired from the Navy, the kids started pre-school, then kindergarten, and then regular elementary school all on time. We have had constant therapy of one sort or another for them since they came home from the hospital. There have been a couple more eye surgeries, two major hip surgeries, casts, colds, bronchitis with regular breathing treatments, and the standard list of bumps and bruises that any family with kids have. There have been some very bleak hours. My marriage has had its share of bumps and bruises along the way, as most do. But she and I signed on “for better or worse,” and we know that at the end of the day we are still going to be here for each other and, just as importantly, for our quadruplets.
            There are also birthday parties, five a.m. Christmas mornings filled with the wonderment that only children can bring. So many memories: Faith learning to ride a bike (her mother taught her!), Hope taking her first tentative steps at the age of nearly four after only being able to “walk” on her knees, Lauren looking at a “V” of geese flying by in the crisp fall air and asking “why do they fly in the shape of a letter?,” Taylor deciphering all those dots on the Braille paper and reading to me. We have dozens of masterpieces drawn/colored/created just for us, late night moments that only a parent can steal when you check on the kids before going to bed and the whole house is silent (finally) and you just stare at their angelic faces so pure while lost in their dreams. The great times far outnumber the bad. And if that is not enough, all I have to do is look at four eight-year-olds who have beaten all the odds. When I look at those little “preemie” diapers and then look at my kids now, it is hard to even picture how they started their lives, those little featherless birds.
            Yes, there are times when you just want to quit. But you won’t. When you just want to walk out the door and take a month off without telling a soul where you are going. But you don’t. When your wife (or husband) would rather toss you out on your....er......ear, but never would. That is when you must remember that it is ok to let someone know how you feel. Holding everything inside is not the way to solve any problems, especially in the demanding world of parenting children with special needs and/or HOM. A personal journal might help. Or give your wife a Mom’s Day Off or maybe even ask her out on a date!
            There is one other thing on which I have to work very hard and at which I am still not very good. Most often, this happens very late at night, when the house is still and I am the only one awake. Dads, here it is, my one great pearl of wisdom. Don’t ever forget that when the chips are down, when your back is against the wall, and you just need to release some emotion, because believe me, there will be times. Remember. No matter what anyone says, it’s ok to cry.

From the Editor…..by Lucy Cusick

            We all know about being politically correct, whether we choose to be or not. And most of us know about people first language. You know, we should use the term “person with a disability” instead of “disabled person.” The point is that the person is a person first – and has a disability second. This language is more respectful of the person so I try to use people first language, because it is politically correct, more respectful, and an education for those who might not know how to refer to people with disabilities.
            I learned long ago that the general population is not tuned into the disability world. I realize after 21 years that people are not smart (stupid, insensitive, ignorant – choose your adjective). They park in handicapped parking places (sorry, accessible parking places), use words like spastic (instead of clumsy) and mongoloid (the old word for Down Syndrome).
            I can get over most of that. Truthfully, I’m not even politically correct all the time. But there are two words that I would delete forever among the English language.
            The first one is the word ‘get.’ I can still see my high school English teacher, who as a very close family friend was considered my aunt, wringing her hands and spouting about never, never, NEVER using the word ‘get.’ She said – and she was right – that there is ALWAYS another word to use. You don’t ‘get’ a cold. You catch one – or you have one. Did you ‘get’ your milk at the store? Just buy it. Of course, this eliminates all the “Got Milk” ads, but they’re getting old (oops, they are old) anyway.
            The second is the word ‘retard.’ Ok, yes, I know it can mean to slow down, as in ‘this medication may retard growth’ or in musical lyrics. But the word ‘retard’ should never be used when discussing a person’s cognitive abilities. The most politically correct term is ‘person with cognitive delays,’ but not everyone knows what that means so I can handle the term ‘mental retardation.’ But I cannot bear the word ‘retard.’
            Now, too bad that I hear this word frequently among typical teens; they use the word mostly in conversation, discussing someone who just didn’t get (oops – understand) a joke or who is just being a jerk. They are not purposefully being disrespectful of people with mental retardation. They’re just being teens (lol). But, I do ask them nicely to not use the word ‘retard’ around me, that it could really hurt someone’s feelings. Like mine.

When Your Nonverbal Child Is In Pain
Dr. Ruth Brown

Parents of nonverbal children have a daunting task of sorting out symptoms. Is their child seriously ill or just having a bad day? Pediatricians share this challenge with you. Here’s the inside look at how we evaluate a nonverbal child with apparent pain:

We ask the usual questions—fever, appetite, vomiting, diarrhea, rash, cough, unusual odor to urine, seizures, medication change. If anything is positive, we pursue.
A physical exam for ear infection, sore throat, mouth ulcers, dental abscess, pneumonia, abdominal tenderness and skin problems is done. If any positive physical findings, these are addressed.
If the child is in a cast, the cast must be cut to rule out pressure sores.
If the child has cerebral palsy or other neuromuscular disorder, consider the possibility of a dislocated hip causing pain. A hip x-ray and/or orthopedic evaluation may be indicated. One clue to hip pain is the fact that the child seems to be in pain when the legs are moved, and the child requires frequent position changes at night.
If the child has a shunt, a CAT scan or MRI must be done to rule out shunt problems.
If there is any hint of constipation, this is addressed with enemas and laxatives. Constipation can certainly be a cause of pain, especially in the physically disabled child.
If your child is a female of menstruating age and maturation, observe to see if she is beginning her menstrual period. The pain should not occur more than one day before the onset of bleeding.
If all of the above is not helpful in identifying what is creating the discomfort in the child or the child appears seriously ill, then more invasive tests may be indicated—a blood count, and urinalysis (usually by catheter) are basic.
If the above tests and evaluations are nonrevealing, we consider the possibility that the child may have stomach/esophageal discomfort. Gastroesophageal reflux is a common disorder in physically disabled children, and can cause stomach pain. We may try medication to treat this problem and evaluate its effects over a few days.
If symptoms continue, the child needs to be re-examined. You and your child’s pediatrician work as a team. Do not be apologetic for asking for follow up visits when you sense that your child is not improving. We all want your child to be well!

Equipment That Works!

Martie Bode started searching for a bed to keep her son Connor, now 8, safe at night. The ones she found were unaffordable and ‘medical’ looking. Connor was born with a rare brain disorder called schizencephaly that causes him to be severely delayed with fine motor skills, gross motor skills, speech and cognitive skills. He is hearing and vision impaired, has acid reflux, cerebral palsy, reduced muscle tone and an eating disorder. Connor does not sit-up, crawl, walk or talk and is fed through a gastrostomy feeding tube. Connor is blessed with a sweet personality and is very happy and vocal around animals and children! He adores fire-trucks, music, water, animals, children, school and being outdoors! Connor will be 8 years old in February and is learning to use his wheel-chair with directionality and communicates uniquely in his own way.
From Martie: Connor is slowing transitioning into his new bed! We purchased a Pine Captain's Bed and additional parts from ROOMS-TO-GO KIDS in Duluth and had a cabinet maker modify the bed according to our specifications and his recommendations. The bed is not only beautiful, but is exactly what we wanted and needed for Connor. We spent around $1,500 on parts, hardware & labor, but we were happy with that!

Do you have Equipment That Works? Send a description, costs, and photo to FOCUS at lucy@focus-ga.org

A Perfect Life
by Amy Leiter

I moved to Atlanta from New York City in February 2000 and within a few weeks met a very dynamic ‘perfect’ man to show me around this wonderful city. That man became someone special. While dating, we traveled the world together, no place was too far or too unusual, from hiking the Inca trail in Peru to a weekend in Paris. We felt we had the perfect life. In July 2003, Matt and I planned the perfect wedding in Tuscany, Italy. It was spectacular, and we had the love and support of 44 of our friends and family there.

Since I was 36 years old when we married, we decided to start a family quickly. Within two months, I was pregnant and expecting the first girl in a family with all boys! My pregnancy was not so easy. I was finishing up my MBA at night by doubling my course load. I felt sick all the time - not morning sickness sick, just run down. I told the nurse at my OB/GYN’s office, “If this is the way women feel when they are pregnant, someone is keeping a big secret because this just doesn’t seem right!”

One morning, on a whim, I took my blood pressure while at Kroger. I couldn’t believe the number it registered: 140/90. Something was wrong. I called my OB/GYN immediately and checked into the hospital by noon. I was 26 weeks pregnant with high blood pressure and having contractions. I was discharged on bed rest and spent the next four weeks at home. I was not a great bed rest patient. When I was left alone, I would calculate how long I could be upright without my blood pressure rising dangerously. This was stupid, but I really thought bad things did not happen to me. I would get through this. I had the perfect life.

At 30 weeks, my blood pressure was still a little high, but my platelets began to drop rapidly. I was diagnosed with preeclampsia along with HELLP syndrome (red blood cell breakdown and elevated liver enzymes). I went back to the hospital for the remainder of my pregnancy. The first week in the hospital, I was visited by two memorable people; at the time, I didn’t think I needed either one of them. The neonatologist told me about of the risks of having a premature baby and, more specifically, about intraventricular hemorrhages (IVH), otherwise known as strokes. I listened patiently to his speech and willed him to leave my room. I knew that he had cautioned many others who escaped the issues, and I thought to myself as he left, “I am going to carry this baby to term. This will not happen to me.” Shortly afterwards, the chaplain came by. She offered me hope and encouragement and, though I have a lot of faith, I am not a terribly religious person. So like the doctor, I wished her to leave, too. I did not understand why all these people were trying to take away the dreams of my pregnancy and, according to the ultra-sound, my beautiful little girl.

The next day at 31 weeks, our baby was delivered by emergency C-section. Samantha weighed 3 pounds, 11 ounces. We experienced the normal ‘honeymoon’ period in the NICU. She just needed a little help breathing and suffered a Grade 1 IVH, which after a week, was healing normally. She was moved into the intermediate nursery. The nurses were her cheerleaders, encouraging her to take the next steps…breathing and eating on her own.

When Samantha was 2 ½ weeks old, I experienced my first case of ‘Mother’s Intuition.’ It was the night before Mother’s Day, and I had a terrible urge to visit Samantha. When I did, I noticed Samantha looked ‘spooked’ and was very agitated. My blue-eyed little girl now had dark, distant eyes and was in distress. I questioned the nurse, who told me it was just growing pains. I left her a few hours later when she appeared to be more comfortable. But, on Mother’s Day, it must have continued because the nurses would not let me see her until late at night. Once again, they explained to me that she was just getting older and a personality. In my opinion, something was wrong. I thought back to a nurse who stayed with me after delivering Samantha; she was watching me for seizures and wanted to see if I looked ‘spooked.’ At 5am the next morning, the same neonatologist who visited before delivery called to explain that our daughter was back in the NICU and having seizures. The CT scan showed that she had a Grade 3 IVH, which, by the end of the day, had escalated to a Grade 4 bilateral bleed.

We were transferred to the NICU at Scottish Rite. It was the worst day of our lives. Our not quite 4-pound baby girl was transferred in an ambulance to have the brain surgery to reduce the pressure caused by the hemorrhage. We stayed at Scottish Rite for 8 ½ weeks and received outstanding care. Samantha did not need a shunt, but she still had significant seizures and issues with breathing. The brain damage caused by the bleed brought one doctor to tears. But three significant things happened while we were at Scottish Rite:

(1) The first day we arrived, I pulled my husband aside for a heart to heart. Our daughter was not perfect and, in reading the issues resulting from a Grade 4 IVH, would most likely never be ‘perfect.’ We would likely face many issues which would affect her, our marriage and our family. If he was not willing to accept her for who she is or who we are now, then I wanted him to leave. We did not have the perfect life any longer, and I knew that would be hard for Matt to handle, or any family for that matter. Matt said his love for his daughter was unconditional. It was not an issue and we needed to focus 110% on her until she got well. With that conversation behind us, we were ready to work together for our daughter and to unravel this new world we were in. When you have a baby, you don’t expect to have a lesson in neurology, ophthalmology, and pulmonlogy, just to name a few. We had a great primary nurse who led the way, attending every care conference, calling with positive news, and constantly reading Guess How Much I Love You to Samantha. After 2 ½ years, Sammie and her nurse still have a very special bond, one I cannot compete with and would not change.

(2) The second significant event was when two doctors gave us hope, even with all of the worst case scenarios, by telling us that, as her parents, we can make a difference in Samantha’s life. We are empowered to advocate for her and even when we walk through the doors of the hospital, doctor’s office or therapist center, we do not loose the ability to advocate for her. We make a difference in her life - to push the limits, be vocal and demand the best (now we say ‘most appropriate’) for our daughter’s quality of life. These two doctors gave us the hope and the power for a good future, regardless of our prognosis.

(3) The last and probably the most significant thing was actually a person: the cleaning lady at Scottish Rite who came each night; I felt this very kind woman looked over Samantha when I was not there. Every night, she came to Samantha’s bedside and prayed for her and called her ‘my angel.’ She brought me peace and comfort; one day she told me that ‘God watches over all of our children.’ This brought me a great amount of faith in the fact that I could only do so much, along with the doctors and nurses, but it was God who looked after all of our children, that He had a special place for them and will care for our babies.

Samantha was discharged after 11 weeks in two NICUs on our first wedding anniversary. We adjusted our lives to the monitors, the pulse ox machines and the oxygen deliveries. We hired and fired therapists and established the best team of individuals to help us through this unknown journey we had begun. We left the hospital with a long list of issues and acronyms and, as parents, we did not believe them.

We returned to Scottish Rite for a shunt at 6 months old, and a few months after that, Sammie was diagnosed with a relatively unusual seizure disorder called Infantile Spasms, which have a particular EEG pattern called hypsarrhythmia. Each time we are told that Samantha needs brain surgery or that she has a seizure disorder, the statistics point to more possibilities of mental retardation and/or cerebral palsy, and we see this huge mountain ahead of us. It is almost unbearable, but we have learned to develop a plan, discover the options, put together a new and improved team, and find the support to start the climb.

In December 2004, around the time that Sammie was diagnosed with Infantile Spasms, I discovered I was pregnant again. I was scared, overwhelmed and probably pretty hormonal. I reached out to Parent to Parent of Georgia. Through their mentor program, I found FOCUS and within a day, I had a call from Lucy. Just her happy voice on the other end of the phone welcoming me into this world that I was just starting to accept made me feel less alone. Lucy taught me instantly that there can be happiness and acceptance in our situations; that allowed me to accept that it is OK to be mad about it from time to time. None of us asked for this, but here we are.

Now, Samantha is a beautiful 2 ½ year old little girl. Our journey has just begun. Her seizures are controlled for the moment, and she has her father’s strong will and determination to give 110% at eight therapy sessions each week. She has an amazing ability to make any person feel like they are her best friend. Samantha is delayed in every aspect and is not walking or talking. She just attended the Acquire © Therapy program at University of Alabama in Birmingham, where she learned to crawl, increased the use of her right side by about 50% overall, and continued to develop cognitive skills. She is mostly happy, shows her displeasure with her little brother (as most older siblings do), loves attention from her grandparents, and enjoys being a ‘typical’ kid at day care 3 days a week.

I look back, and the mountains we’ve climbed now seem like hills. More mountains are ahead, and we will face them together. But for now, I have to say that our life is perfect, and it is Samantha who makes it that way.

From the Editor
by Lucy Cusick

"It’s been a good day.” Some days, everything just works and the day goes smoothly. Some days, nothing goes right and I take to the couch, annoyed and frustrated. Most days are somewhere in between. What makes a Good Day?

As a mom of young children, a Good Day was defined by catching 15 minutes of quiet, by making it through a meal without a major spill and actually sitting down for 5 consecutive minutes, or by sleeping through the night. As the parent of a child with special needs, the definition shifts. Every day NOT in the hospital, NOT dealing with an insurance/Medicaid issue, or NOT getting a call from school is a Good Day. Now, as the mother of a teen and a young adult, my definition of a Good Day has changed again: no car accidents (teen), the Marta Lift Van being on time (young adult), finally finishing a newsletter (work), or actually having a plan for dinner (home).

Some days are so jammed with ‘to-dos’ that the day practically runs itself. I just go through the motions, following my schedule, and hoping that one meeting doesn’t run long or that the traffic cooperates. Other days, I am the taskmaster, trying to fit all the necessary pieces together so that perhaps I cross three errands off the list and still be home to actually cook dinner. But I know it’s been a Good Day when the kitchen counters are clean – no piles of mail to sort, homework to sign, groceries to put away, or dishes to wash. Nothing warms my heart like clean kitchen counters….how sad is that?

The holidays are over, and all that’s left are the bills. The days are short and the nights are long. I hope you’ll cherish any quiet minutes that come your way, that your have-done list is longer than your to-do list, and that your kitchen counters are clean.

My best wishes to you for many Good Days in 2007.

When Should My Child Use AAC?
By Ben & Pat Satterfield

Communication: The ability to share our needs, ideas, thoughts, dreams with others and understand what others share with us. It is a reciprocal arrangement that is at the core of our everyday lives. It is a basic need.

We parents invest considerable time and resources in the development of communication for our children. We hope and pray that they will one day develop their own speech and be capable to effective communication. We want to do what we can to hasten that day. But we wonder, “How long will it be?” or “What can we do in the meantime?” We want to limit their frustration at being unable to communicate their wants and desires, their ideas and thoughts. We (Ben and Pat) come at this process from the perspective of parents of a child with a developmental disability, and as professionals in the field of assistive technology (AT), but not as Speech Language Pathologists. Here are some thoughts we would like to share from our experiences.

Parents are often able to understand the wants and needs of their children without a lot of speech. But we must still do all that we can to enhance language and speech development to maximize our child’s potential. What other children just pick up, we must emphasize and teach our children. Assistive Technology, and here specifically communication technologies, can help us. Augmentative and Alternative Communication (AAC) can take several forms. These can be thought of as a continuum from low-tech, using symbols throughout the environment, to mid-tech, using single message and static display devices, on up to high-tech devices that can employ powerful language systems.

From labeling our environment with picture symbols and mentioning those words to our child throughout their day, to providing picture-supported text in books, to communication wallets and notebooks for outings and activities with the vocabulary for that event, to actual voice output devices, AAC can help us to make language “visible” and more concrete. Some of your children may be using Aided Language Stimulation in speech therapy or in school. This is where picture symbols are highlighted as the words are spoken or sung to make the connection between the concept and the word and picture symbol more concrete.

We know that typical language development involves expressive (what we say) and receptive language (what we hear and comprehend), as well as actual speech production. The job of the Speech Language Pathologist (SLP) is to guide us in language building activities and speech production. If speech is slow developing, then the SLP can augment language development and not wait for speech to move ahead in language concepts. If children do not have an opportunity to use language, they will have a tough time developing their language potential. If we wait until they can speak before training them to use language, they will be limited further.

How do you know if or when your child would benefit from AAC? I think it is fair to say that all children benefit from language development being enhanced. Our own son , Blake, now 15, born with Down Syndrome, signed before he could speak – now a practice even used with typical babies! So why wait to get started? Being proactive about language can’t hurt.

Symbols, which form the basis for AAC, are available from a variety of sources. They can be printed out, laminated, and affixed to items throughout the home. These symbols can become the basis for developing language. We can say the word aloud as we help them associate the object and the symbol. The symbol can be accompanied by the printed word to assist ultimately with literacy. We can include them in books that we read to them. We can also give them opportunities to use language via the symbols. We can provide opportunities for them tell us things by use of the symbols.

Symbols can be used on devices that have recorded speech. For limited or emerging vocabularies these may be single message or sequenced message devices. As vocabularies grow, devices may be static display (using overlays that are changed manually) or dynamic display (where a computer screen is used to present sets of symbols organized around specific themes). Some use single- meaning symbols. Other devices use symbols in combination to help foster rapid communication. Whether to augment speech when it is slow developing is the subject of some difference of opinion among parents and professionals alike. If the device speaks for the child, will speech development be hindered? Our experience is the same for using sign and using devices; augmenting speech helps to limit frustration, provide a good model, and enhance communication while speech is developing. But once they can talk, they will! It is easier!

When is it time for a speech device? You might be guided by the difference between what your child communicates to you (the parent) and what the child appears able to communicate to others in the community. As our children grow, they need to develop the ability to interact with people in their environment. This is important for their safety and independence. When typical peers or other individuals in the community are unable to understand what your child wants to say, or when your child is experiencing a high level of frustration over not being able to get you to understand, it may be time to select a speech device.

The choice of a personal AAC device is a team effort. This team should include an SLP (the professional trained to perform a speech evaluation), family members (parents), and teachers and other therapists who work closely with your child. You may include sales professionals who can explain thoroughly the features and benefits of particular AAC devices. Often the child’s doctor will be required to write a prescription for the device that is chosen. Joy Zabala, at the University of Kentucky, suggests that it is best to begin this process by examining the child’s abilities and needs, the environment around the child, and the tasks we want to see the child attempt. The choice of a device should weigh these factors as well as language growth potential for the child. A device that is too challenging may discourage your child while a device that is too limiting may frustrate them as much as not having a device at all.

Blackstone, S. W. & Berg, M. H. (2003). “Social Networks: A Communication Inventory for Individuals with Complex Communication Needs and their Communication Partners.” ConnSENSE Bulletin. Retrieved 10/31/2006 from: http://www.consensebulletin.com/socialnetworks.html

Millar, D.C., Light, J. C., & Schlosser, R. (April, 2006). “The Impact of Augmentative and Alternative Communication Intervention on the Speech Production of Individuals with Developmental Disabilities: A Research Review.” Journal of Speech, Language, and Hearing Research. 49, 248-264.

Wright, J. A., et al. (2006). “Communication aids in the classroom: the views of education staff and speech and language therapists involved with the Communication Aids Project.” British Journal of Special Education. 33(1), 25-32