To the Family Just Starting Out With an Apraxia Diagnosis

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To the family just starting out with an apraxia diagnosis … breathe.

I know it’s hard because I’ve been there. Try not to let your thoughts and fears consume you; remember your child is still your child despite the diagnosis. Many people are unaware of apraxia, which is a neurological motor planning disorder. A child with apraxia knows exactly what he wants to say, but the breakdown between the brain and the mouth prevents him from doing so. It can be very frustrating for the children and families of those struggling with this speech disorder.

As your children’s guide and leader, you’ve been thrown into a position for which no parenting book prepares you and to which no one you know can relate. Information and therapy names, appointments, and evaluations are now barraging you faster than you can digest relevant information. I know. It feels overwhelming.

Unfortunately, you will be subjected to ignorant, infuriating, hurtful comments, yet most people are too oblivious to realize how they have made you feel. Sometimes those comments will come from family, sometimes from friends, and sometimes from complete strangers. Although 99% of the people you encounter have no idea what a day in your life looks or feels like, most won’t hesitate to voice their opinions. Try to be patient and know that awareness can emerge from ignorance. Help others understand — not just for your child but also for every child. We’re all in this together.

It’s OK to cry or to be angry, exhausted, and frustrated. It has been almost two years since our son Ryder’s diagnosis, yet some days I want to scream, stomp my feet, and yell, “It is not fair!” No, it’s not fair, but Ryder needs me to be on top of my game, even when I don’t feel I have the strength. So after my occasional pity party, I pull it together again. He deserves that. I return to my frequent talks with his SLP, OT and ESE. I rally his team to do their best, and I do mine. Remember that children with apraxia need you to be strong, to fight, to advocate. For our children to succeed, we all have to work together.

I find confidence and strength in gaining knowledge and trying to make a difference in Ryder’s world. So I read and study every available article — and that’s how I found CASANA. For the first time, I felt someone understood how I was feeling and offered a wealth of information to help me anticipate the road ahead. Last summer I attended the CASANA conference in San Antonio, Texas, hoping to educate myself about apraxia and connect with the hundreds of others whose children are on a path similar to Ryder’s. Looking over the class options with me, my husband said, “No matter what, I want you to take this class, ‘Your Oxygen Mask First.’” I wasn’t thrilled by the idea, and I wanted to take another course scheduled at the same time, but he told me I needed it. It felt selfish attending a conference to learn about ways of helping my son but instead listening to someone talk about me — but I grudgingly selected the class.

The speaker began by saying, “Think of your life like a plane. You must put on your oxygen mask first. If you do not take care of yourself, you will not be able to take care of your child.” The moral of the story is if you don’t take care of yourself, you will drain yourself and run out of oxygen. It hit me like a ton of bricks. I hadn’t realized how drained I was mentally, emotionally, and physically. I had nothing left. I was almost in tears listening to this woman tell me I had to put myself first. I couldn’t remember the last time I had slept through the night, gone a day without spending hours looking for information online, attended a yoga class (there are probably cobwebs on my mat, and Lord knows my yoga pants are for grocery shopping at this point), or had coffee with friends. Those days seemed so far gone, like another lifetime. I had spent every day consumed with worry, fear, anxiety, and guilt about something I could not control. Was I neglecting the needs of my daughter or my husband? Was I making the best choice about Ryder’s therapy? His school?

I constantly feel guilty spending any money on myself or on things that are not necessities. The guilt is palpable. It stays in my throat and in my head, controlling everything I do. I’d previously had no idea how hard the ebb and flow of apraxia would be for my family and me. After the CASANA conference, I returned to Jacksonville and told my husband, “I must do something for myself. I officially need a break, a minute to breathe.” I had never previously left Ryder. We rarely go out, we do not have babysitters, and he comes along everywhere I go. We all have different experiences that truly soothe our souls. For me, it’s live music. So I perused the concert calendars, and then I booked a flight to Colorado to see one of my favorite bands at Red Rocks. Financially it was not an easy decision, but mentally, I had to do it.

In Colorado I spent three days decompressing while surrounded with people who gave me strength when I had none. I allowed myself to be vulnerable, stay up late with my friends, and talk honestly. We are fortunate to have a few true friends who are always there for us, who love our children as we do, and whose presence lightens our mental load and helps us recharge. I needed them so much more than I realized, and I’m so thankful my husband recognized what I was unable to see.

Do not make the same mistake I made. Don’t wait until you are burned out. Instead, reach out, ask for help, and take some time to do what you love. Breathe. Find your source of strength. You will need it. This long, evolving road will require the best of you. Some people find strength in a supportive friend or an online support group, and some turn to their faith. There is no right or wrong answer, but know you need support. Sadly, you will lose a few friends and maybe some family members in the process. But you will gain support and bond with people who will share your path and know your fears. They will understand why you sometimes avoid social situations. Take comfort in knowing your child will be OK. With frequent speech therapy, he can make huge gains. Your world is not ending; it’s only changing. As alone as you may feel, try to think globally on the next sleepless night, whether facing your fears before an IEP, feeling anxiety about the future, or feeling exhausted from fighting the insurance company.

Apraxia-Kids—Every Child Deserves A Voice on Facebook is my second family. At 11 p.m. or 3 a.m., someone who understands exactly what you and I are going through is available. I want your child to succeed as much as I want this for our son. Sometimes it really does take a village to raise a child. Personally, I find strength in trying to make a difference for all our children. To help our community and our family, I started a walk for children with apraxia. I have gained great strength from speaking with other parents, helping families navigate our convoluted system, and watching my son make friends. All the money we raise from the walk benefits CASANA, the only national nonprofit dedicated to giving every child a voice. It is used to provide iPads as communication devices for children with apraxia, speech therapy grants, parent and speech pathology education, as well as research, since there is currently no known cause for most cases of apraxia.

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Thinkstock photo by Katarzyna Bialasiewicz

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My Daughter With Apraxia Taught Me She’s on Her Own Timeline

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I lived the first 32 years of my life being an obsessive overachiever. I needed to get the best grades, have a perfect driving record and get to the highest level on Candy Crush. As my daughter’s due date drew closer, I envisioned raising my own little certifiably genius, overachieving child who would know all her colors before her first birthday and be reading chapter books by the age of 4. OK, maybe 5. We’ll cut her a little slack.

As she grew that first year, I ambitiously ticked off each milestone and rejoiced in her brilliance when she reached one much earlier than the so-called experts claimed was typical. She had her full set of baby teeth at 17 months. Of course, she was destined for greatness. Rolling over, sitting up, eating solid foods, walking — I was already pricing flights to Stockholm so we could accept her Nobel Prize!

A few weeks before her first birthday, we spent the day with a friend’s little boy who was just a few months older than our daughter and was already stumbling his way through most of the alphabet. My competitive spirit kicked into overdrive. If he can do it, my daughter can do it! Then 15 months rolled around and still no alphabet. In fact, she had no distinguishable words at all.

At 18 months, all her friends were showing off their impressive vocabulary of animals, household items, names of family members and TV characters. My daughter had attempted a few times to say “Momma,” although it came out more like “Mamamamamama.”

Why didn’t she have any words? She should be reading by now. All the medical professionals in her life kept saying, “She’s just a late bloomer,” “Lots of kids don’t talk until they’re 2″ and “Just give her time.” But I didn’t want to give her time; I wanted shock and awe at her second birthday party when she recited the Pledge of Allegiance in front of all our friends.

After she turned 2, we started digging in to get to the root of the issue. We heard words like autism and deafness. We saw lots of specialists: ear doctors, head doctors and therapists. Finally, everyone came around the only diagnosis that made sense: apraxia. I had to face the truth that my daughter wouldn’t be the youngest person in her Sunday school class to recite the alphabet — backwards. In fact, she wouldn’t speak any intelligible words until after her third birthday. It took her a full six months of speech therapy to even start to get the hang of the letter “B.”

Apraxia challenged the overachiever in me. It felt like all my hopes and dreams for this little person came to a screeching halt. How can I teach her 200 sight words before kindergarten if I can’t understand her? How will I know if she can count to 100 when she only speaks with vowels? How will she give her valedictorian speech if she can’t even talk?

We are now eight months post-diagnosis, and this spunky little girl has taught me to embrace the fact that she is on her own timeline. Whatever accolades I may have wanted for her, no matter how wonderful they may be, might never be a reality. We don’t get a detailed milestone calendar with apraxia. It’s all a big unknown. I don’t like that. I’m task-oriented. I want a measurable goal we can work toward. I want to check things off our list. I want someone to tell me when my daughter might be able to “catch up” with other kids her age, although I know she might not ever catch up.

Progress is important, but I know her greatest achievement won’t be the day she finally begins a word with a consonant sound. In my mind, she’s already an overachiever. She faces life every day with a disability that makes one of the most basic, natural human functions extremely difficult for her. She could easily be embarrassed about her disability, but she isn’t. She’s aware of it, but she doesn’t hide. She’s a social butterfly, she loves to sing, she loves books and she makes friends wherever she goes.

My daughter’s diagnosis taught me to slow down and enjoy her life as it unfolds. I’ve learned to let go of who I think she needs to be and embrace who she is. I don’t want to waste time wishing for a childhood that I projected on her. I want to walk in step with her, at her pace and on her own time.

It can be a long road with apraxia. But who knows? There might still be a valedictorian speech waiting for her at the end of it.

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Feeling 'Lost in the Shuffle' as Parents to a Child With Dyspraxia

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Our story began like many others. After an uneventful pregnancy and a relatively easy labor, I gave birth to a healthy 8 pound 9 ounce boy on May 20, 2011. Our sweet Ryder progressed as all the charts said he should, met all the milestones, gained weight and height toward the top of the charts, and started walking at 9 months. At around 10 months, he began to say “cat” very clearly; since we have two cats, it was a natural first word for him. We were always complimented on what a quiet baby he was. In hindsight, we realized that he was very quiet, never really cooing or babbling as a baby. When Ryder was 14 months old, we moved from Boulder, Colorado to Jacksonville, Florida.

After our move, Ryder stopped saying “cat” and began to say “meow” instead. It was cute at first, but then I began asking our new pediatrician about the substitution of words for sounds. I was told, “It’s not a big deal, don’t worry about it; he obviously understands everything.” OK, I thought, she’s the professional, right? Over the next 18 months, Ryder gained a few words, including “momma,”
“dada,” “Sasha” (his sister), “dog” (which he usually referred to as “woof”), and others, totaling 34 words when he was almost 3. At every doctor’s appointment, I brought up his lack of vocabulary. After a year of being told, “He’s a late talker, he understands everything, stop worrying,” we became
accustomed to what I call the never-ending game of charades. He could walk me to his cup, and I knew what he wanted; I’d show him the milk or water and he would point. He could point to the movie he wanted to watch or the puzzle he wanted. I knew it wasn’t “normal,” but I had asked all of the questions, and it had become “our normal.”

Around October 2013, the conversation with the doctor changed. I was told that I talked too much
for him, that I don’t make him work for it; that it’s because I have an older child, and that I should refuse to give him something until he says it. He was 2 and a half years old. Again, I thought, she’s the professional, and I have to rely on her expertise. I had better change everything immediately, because I am hindering my child’s development! I felt like a complete failure.

I met with Ryder’s teachers, who had also had expressed concern, and told them what the doctor had said. They began to try the things the doctor had suggested. Not only did we not gain any words, but everything also became a fight. I shouldn’t give him milk because he can’t say it? Or dinner? Or a toy? Where was the line? What kind of advice was this? Everyone was miserable. When his teachers and I met again, they suggested that he undergo speech screening.

In April 2014, I received the results of Ryder’s speech screening, covered with scribble marks,
a check next to “Fail,” and a note that said, “Call me.” The speech pathologist said he didn’t have enough words for her to screen him. She told me he could point to every letter, number, and color, but he couldn’t say the word for each. Noting a gap between his expressive and his receptive speech, she said, “I think your son has something called apraxia; he needs a full evaluation immediately.”

I’m not sure I heard anything she said after that, because I was frantically Googling while she was still speaking. What was apraxia? Would he be OK? What did this mean for him, for us, for our future? Would he ever speak? As I read the apraxia “checklist,” I realized that he met every single mark. One of the biggest indicators of apraxia is a severe gap between expressive and receptive communication. How did our pediatrician not know this? I will never forget the tears and hopelessness I felt on that day. When we took Ryder for a full evaluation, the speech pathologist’s suspicions were confirmed. We found a new pediatrician, who immediately confirmed the diagnosis and told us that out of those 34 words we clung to for hope, 85-90% would be considered unintelligible, meaning that only we understood Ryder.

Going home to learn everything we could, we discovered that childhood apraxia of speech is
found in about one out of every 1,000 kids. They understand everything going on around them, but they have a neurological motor planning disorder that prevents them from speaking. There is a wide range in severity, from being completely nonverbal to experiencing fluency issues, pitch changes, difficulty “planning” what they are trying to say and/or a combination of these characteristics. To progress, children with apraxia require intense, frequent one-on-one speech therapy. There is no matrix to follow.

Then we received a second shock: most insurance companies deem this condition a “habilitive” or developmental delay, meaning that our child never had the skill, so he can’t receive rehab to regain it — or if it is developmental, he will grow out of it and we should refer to our school system for assistance. Calling every government agency I could, I was told everything from he’s too young, to he’s too old; you make too much, you already have insurance, so we can’t accept you, and my favorites, “We have a 10-year waitlist” or “We have closed our waitlist because we have no idea when we will reach the end.” This past year has been the hardest, loneliest, and most frightening year of my life.

I can’t help wondering, does he have friends? How was his day? Do kids pick on him? What is school like for him? Ryder wears an ID bracelet and necklace, as he could become separated from us and not be able to communicate. We have good and not so good days.

With all of the therapy and information, parents and caretakers of children with apraxia often feel lost in the shuffle. No, our children will not die from this, but we as a family are forever changed. This lifelong battle requires support from family and friends. We need support, and our children need support and patience. Please do not minimize our journey as “only a speech” disorder; the fear, frustration and isolation we feel are incredibly real.

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What People Don't Understand When Your Child Doesn't Speak

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There’s an awkward moment that sometimes occurs when I’m out with my daughter, Jaycee, in public. It could be a stranger asking her what her name is. It could be someone who gave her a compliment who is patiently waiting for some sort of reply.  

It is then that I usually have to explain she can’t say many words. This leads to a wide range of reactions from people. The majority seem to feel that those with limited or no verbal speech have none because either no one made them talk growing up or the person just doesn’t want to talk.

The truth is far from this idea though. Generally, there is a reason why individuals have no or little verbal speech. It is not a result of someone not trying hard enough. When I try to explain this to people, it often seems like a foreign concept to many.

The vast majority of people with Down syndrome are able to verbally communicate. My daughter, on the other hand, struggles in this area. Jaycee was considered nonverbal for many years. I now consider her minimally verbal at age 10. She says about 20 words clearly now and attempts many more words. Most of her communication is with sign language and her communication device. She has difficulty with verbal speech due to childhood apraxia of speech and intellectual disability, both of which can be associated with Down syndrome.
Other individuals who are nonverbal may have difficulty due to a brain injury, stroke, profound intellectual disability, or muscle weakness in the face, to name a few. In short, understand that if someone doesn’t speak, there is a medical or developmental reason for it.

Outsiders don’t understand why my daughter doesn’t speak. I have heard comments like:

“She could talk if she really wanted to.”

“I guess everyone talks for her, so she doesn’t have to speak.”

“No one is making her talk, otherwise she would be talking.”

“She has nothing to talk about or she would talk.”

“If she can sign so well, she should be able to talk.”

These comments have lessened as Jaycee has gotten older. When she was younger, it seemed like my husband and I were seen as partially to blame for her lack of speech. Some of the comments were insulting, as no one knew what we were doing to help her in this area.

Trust me: Lack of verbal speech is not a result of no one trying. When Jaycee was younger, I spent hours with her at home practicing sounds in isolation, working through the Kaufman praxis words, and encouraging her to use vowel approximations of words (i.e. “ee” for eat). Besides all this, Jaycee got official speech therapy at school. The result was basically no progress in verbal speech, and we were both frustrated. Jaycee got to the point where she shut down when asked to say a word; she recognized speaking was very hard for her. She doesn’t speak because her mouth and brain can’t work together to form the sounds like I can. It’s her body’s fault and no one else’s. I think it’s hard for people to grasp the concept that speaking doesn’t come easily and naturally for everyone, but this is a reality for some.
Even though Jaycee doesn’t have much verbal speech, she has much to communicate about. She has hundreds of signs, which she uses to request, name, and ask questions. Sometimes, this misleads people. Just because someone can sign, doesn’t mean they can speak. Communicating with your hands and your mouth are two different things.

Jaycee also uses her communication device to talk about a variety of subjects. Jaycee has emotions, thoughts, preferences, opinions, and wants that she talks about. I know Jaycee is not alone in this.

Just because someone doesn’t have the ability to speak doesn’t mean the other forms of communication aren’t valid or important. It also doesn’t mean someone deserves blame for the words that just aren’t there.

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When We Asked Gage Golightly If She'd Answer Questions About Her Apraxia

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My 5-year-old son struggles with apraxia, globally, meaning it affects the sequencing and motor planning of everything he does. From speaking to running, reading and writing, Ryder has to work harder than most of his peers, even with several hours of therapy a week. The smallest skill the average person takes for granted, such as throwing a ball or writing his name, requires tremendous thought, planning and sequencing to execute the individual components of the task.

“Childhood apraxia of speech (CAS) is a neurological speech disorder in which children have difficulty planning and programing complex movement sequences underlying speech production.” Individuals with apraxia receive a diagnosis which may rate their deficits from “mild to severe” based upon the intensity of the difficulties exhibited in the areas of planning, production, and intelligibility of speech or lack thereof. “Global apraxia” is a term used to describe difficulty in planning the movement of the limbs of the body when a child also has verbal apraxia.

I am admittedly a research-aholic. Upon learning Ryder has global apraxia, I began my quest to develop a breadth and depth of understanding of the impact this would likely have on him. During one of my countless late nights of Googling sessions, I thought, “There must be an adult out there who has overcome apraxia.” I happened upon Gage Golightly, a young adult with global apraxia. She is an incredibly accomplished actress, a remarkable career choice given her diagnosis.

Gage’s story is uniquely relatable to a parent of a child with severe communication challenges. When you have a small child who is faced with such a large disability, it is hard to imagine a positive outcome for his adult self. Gage has put a face to what success can look like for a child who works relentlessly to overcome their deficits. Gage has moved from episodes of meltdowns due to communication breakdown to episodes of television shows such as “Red Oaks” and “Teen Wolf,” as well as movie roles in “Step Sisters” and “Cabin Fever.”

I reached out to Gage, and much to my excitement, she responded positively and agreed to help campaign on May 14, which is designated as Apraxia Awareness Day. The sheer mass of people who learned about apraxia through her social media efforts that day was moving to both Gage and myself. It was such an overwhelming success that I wanted to tell her story. Gage and her mother, Michele, generously agreed to open up to me.

little boy with apraxia holding photo of gage golightly

Do you remember going to speech therapy? 

Gage: I do! I remember they had these jars of water and they would hit them and I would have to try to mimic the sound. I very clearly remember the feeling when I couldn’t mimic the sound because the words just weren’t there. It was so frustrating!

What was school like for you?

School was very hard for me. Kids were very mean to me, even in kindergarten. I still used sign language in kindergarten and the other kids could speak. I remember I couldn’t tell them, “Hey, don’t take that from me!” or “I don’t like when you do [whatever].” I would [have meltdowns] even into second and third grade because I was so frustrated that no one understood me. I was never picked to play sports because I was a hot mess. I would flinch every time someone would throw a ball because I knew I couldn’t catch it. I would get picked on since I couldn’t do the monkey bars without falling. I remember that frustration being so real and so upsetting. My mom never babied me though, she was like, “ya know what, kids suck and you’ve got to get over it.” I am also dyslexic, all of my kindergarten work I would write upside down or backwards. Dyslexia affected me greatly when I was in fourth grade and learning cursive. I didn’t know what people were writing. I honestly thought the girls had their own code language and they were writing mean and nasty things about me. And that made me really sad. I just didn’t know it was cursive. I also couldn’t tell time on a clock until about fifth grade, it was just all numbers to me, they were all backwards and meant absolutely nothing. I would hate it when the teacher would call on me, asking me “what time is on the clock?” because I always had to say, “Um, I don’t know.”

Other than writing, what else do you feel like you struggled with academically?     

Math was always one of the hardest subjects for me because the numbers would flip themselves around. Even still to this day, I can get a bill and I know what the tip should be, but I have to look at it and count it out on my fingers.

Learning disabilities, such as dyslexia, have a high co-occurrence rate for children with apraxia. Imagine years filled with knowing exactly what you want to say but not being able to produce the words. Then after years of hard work and finally gaining a voice, only to be faced with dyslexia. CAS is truly an invisible disability that has a profound impact upon children and their families. There is no cure for apraxia, but with appropriate therapies, a child can be considered “resolved.”

As a parent, academics and the social component of apraxia are a huge point of stress and worry for me. Did you excel in any areas and how have you overcome the obstacles that you’ve faced?

Reading, believe it or not, I excelled in, in my own time. But if I had to read out loud, that was a nightmare and it still is. I hate reading out loud with a burning passion. Which is so weird because that is a big part of what I do. It’s my job. We always have table reads and I get so nervous, my hands get clammy, I feel like I am going to throw up the whole time. I get so sweaty and nervous because I hate reading out loud. It is just inevitable that I am going to get the words wrong. But I got over it. Now I go in and tell them upfront that I am going to mess up some words and to just roll with it. Memorization isn’t a problem for me once I get the words off the page and into my head. A lot of the time I have to write my lines out in my own handwriting so I can remember which lines are mine. History and science were always easy, math was a no-go, and grammar was difficult due to trying to figure out where things go. It just wouldn’t make sense because it wasn’t how I would say it in my brain.

But overall, school was easy. When I got older, I just needed a little bit of extra time. School didn’t really click for me until about eighth grade. After-school sports just didn’t happen for me and so, it was all really tough until I realized it is just going to suck. I am going to have to work harder than everybody and that is OK. I never was a social butterfly because I got bullied a lot. The friends I did make at a young age, seventh grade, are still my friends and I know they will be there for me forever.

What made you decide to become an actress? 

I don’t know what bug bit me but I knew I wanted to be an actress before I could speak. I remember being about 2 years old when I first thought, this is what I am going to do. By the time I was 8 years old, I wouldn’t drop it and so my mom said, OK let’s go to Los Angeles. We literally stayed at a hotel across the street from the Burbank Airport and sat outside and just waited to hear someone mention something to do with acting. I still can’t believe my mom was like, “OK, we will just go to LA and your dad will stay in Tahoe and give us money so we can do this!”

What helped you overcome apraxia the most?

My parents never babied me. They didn’t treat me as if I had a disability. They put me in everything — tap, ballet, jazz, hip hop, ice skating, riding dirt bikes, everything! They wanted me to gain the coordination and balance, have the frustration and get over it, learn to work with it and make it OK to learn that life isn’t just going to go your way.

little boy with apraxia holding picture of gage golightly

What has been the hardest part of having global apraxia? 

There have been several things throughout my life but currently, I signed on to a new movie, “Step Sisters.” It is about a Greek sorority that steps (a dance genre). All of stepping is processing and sequencing. I came home crying a few times before I went to the director and choreographer and told them. They have been wonderful in helping me. I still have very hard days, I come home crying, eat a chocolate bar and brush it off. 

Overall though, I think I am stronger person than your average 22-year-old walking around because of what I have had to deal with. I think that’s true for anyone who has to overcome something of that sort at a young age. I do feel blessed I had parents who were so incredibly loving and so accepting of me and my downfalls that they actually made it something to rise up with and become stronger.

If you could tell other children that are struggling with apraxia something, what would that be?

I would want them to know that sometimes other kids and other people in general can be mean but you cannot let them get to you. The only people that matter are your family and the family you pick, which are your friends. The only thing that matters is if you are happy with you. Wake up every morning and do the best to your ability to do the best you can do. Even when people are mean, do not partake in that. Be the very best you can be.

If you could tell the peers of a child with apraxia something, what would that be?

Sometimes, things aren’t as they appear. Just because somebody seems different or like they don’t understand, your words still hurt. Words hurt so much. Just offering a smile or trying to communicate with someone means so much more than what you can imagine. Be more open minded, more understanding, and more open hearted.

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I am not exactly sure how to describe the connection I feel with Gage and Michele, It’s as if I have known them my whole life I suppose. We all agree that our paths crossed purposely and intentionally. Maybe it is just to tell their story or maybe it is to change the way society views invisible disabilities. Either way after speaking with Michele it wasn’t hard to see why Gage is exactly who she is and how she managed to come so far.

How old was Gage when you knew something wasn’t quite right? What were your red flags?

She was maybe 6 months old, she never cooed or babbled. Gage was my fourth child, so I knew something wasn’t right.

How often did she attend speech and occupational therapy and for how many years?

We were fortunate that California had a program called PIPP that allowed Gage to go to school for six hours a day. It was a speech and occupational therapy school for children ages 3 to 6 years old. We also had a woman who came to our home three days a week during those three years to help implement and carry over what was being taught in school. Gage remained pretty close to nonverbal until she was 6 years old.

Did you try any special therapies, diets, etc.?

Gage tested high for pesticides when she was young. From that day on we have only eaten organic foods. We also cut out all sugar, dyes and gluten. To this day she still eats that way.

What did you think when Gage said she wanted to be an actress? 

The first time Gage told me, she was signing it over and over. She wanted to be an actress. By the time she was 8 and a half, she really wanted to be an actress. We had saved up some money and her dad said, “Go, take her. She’s been through enough.” He stayed behind and worked and I took her to L.A.

What was the hardest part of being a parent of a child with apraxia/dyspraxia

When she was younger, people just did not understand. Friends, family, the general public, no one. When Gage was around 5 years old, I took her to Sam’s Club. It was an hour drive from our small town and Gage was not happy because of the way her socks felt. I should have just gone home. Once inside, she started banging her head on the cart handle, I took her out and she was hitting her head on the floor, foaming at the mouth, screaming these awful sounds. I got her into the bathroom to try to calm her down. She began to calm down and I guess someone called the police thinking I was hurting her. The police barged in, pulled my hair, they wouldn’t listen to me. They took Gage out one way and put me in handcuffs going the other. Then Gage really flipped out. One of the taste-test ladies knew me from previous shopping trips and came running to the police, explaining the situation. Thankfully the police listened to her, they let me go and gave me Gage back. It was horrible! As she has gotten older and began acting, I would feel so guilty any time I watched her struggle in “the industry.” Like I should be protecting her but instead I am taking her to these places for these auditions.

Did you ever stop worrying? 

No, I haven’t. But, the only thing I can do is make my child stronger, I cannot control the masses. I have always told Gage, “You are a chocolate chip cookie in a sugar cookie world. Who doesn’t love a good chocolate chip cookie?” meaning, she is perfect just the way she is.

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When I asked Michele what she would want other parents to know she was very quick to tell me, “First and foremost do not second guess yourself. Do not allow someone with a degree to override your parental gut instinct, you know your child.” She went on to say, “As rough as it may get and stay – you are what they have. They live in a world that is so difficult for them to process and understand. You have to hang in there.”

Gage remarkably chose a profession which forces her to confront her biggest obstacles on a daily basis. Her perseverance to overcome her deficits speaks volumes to her character and the strength of her support system. Gage admirably credits her parents for setting the stage for her success. In the words of her mother, Michele, “Everything you teach them, regardless of how small it may seem, a new word, a new sign, you are making steps to making their life better. Do not listen to the negativity.”

It’s hard describe what it feels like to speak to someone who can truly relate to your child. It was as if I had the ability to speak to my son nearly two decades from now to hear him express his feelings, his fears and his struggle. I was choking back tears listening to Gage talk. I was overwhelmed by a variety of emotions. It was heartbreaking to hear: she was bullied for things beyond her control, she didn’t form genuine friendships until seventh grade and she can explicitly recall the frustration of being unable to communicate her basic needs. On the other hand, it was inspiring: her contagious love of life, her enviable strength and boundless resilience. Being able to speak to her wonderful mother who has always been an amazing advocate for Gage was so comforting. It isn’t often I speak to someone who gets “it.” For those of you who do not get “it,” well, breathe a little easier. For those of you who do get “it” remember you are not alone and your child can be anything they desire, no matter the mountains that may stand in their way.

To learn more about apraxia, dyspraxia, or sensory processing follow me at www.apraxiamommabear.com.

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What You Don't See in This Picture of My Son With Apraxia

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There are so many things you don’t see in this picture at the right.

Ann Weiss’ son (Photo credit: BellaEva Photography)

What you do see is an exuberant boy. He looks like he doesn’t have a care in the world. He looks like he is the life of the party. He is light, happy, joyful, playful and quite handsome (wink).

You might also think, “Wow, I wish I were in Hawaii right now.” (Sorry about that. We were lucky to be able to go to Maui for a family reunion this summer.)

If you look harder, you might see a kid who doesn’t like to have his haircut, so it’s a little uneven. You might wonder why his lei is crooked (He’s forever in motion, never stopping for a photo.) You might notice a wrinkly shirt, despite Mom’s best attempts at ironing.

What you don’t see is kidney failure at 3 weeks old.

You don’t see his tiny infant body writhing in pain from IVs, catheters and life-saving medication being pushed into his veins. You don’t see the heart monitor showing a near-fatal rhythm. You don’t see his parents’ desperation — both doctors and both unable to fix their son. You don’t see me, cradling him, crying uncontrollably and praying for just one more chance. You don’t see the nurses and doctors standing reverently still while the chaplain quickly baptizes him with another prayer.  

You don’t see the pain of multiple surgeries. Multiple second opinions from around the country. A child with drainage tubes hanging out of his lower abdomen, and the impossible task of changing a poopy diaper while trying to keep the tubes clean. The agony of trying to make the best medical decisions for this boy, despite there being no single best option for a rare condition.

You don’t see the intensive therapies. Swallowing and feeding therapy. Oral motor therapy. Craniosacral therapy. Occupational therapy. Physical therapy. Speech therapy. Early intervention therapy. The worry over not enough therapy. Not good enough therapy. Too much therapy. Changing therapists. The cries and protests from my son about therapy. The meltdowns before, during and after therapy. Our collective exhaustion over every … single … therapy.

Something else you might not see in this picture is this boy’s stubbornness. His determination. His grit. He has worked so hard to get physically strong, which you might glance over in this picture. You don’t see how hard it is for his brain to develop the right motor plans to overcome his apraxia. You don’t see the struggle every time he opens his mouth to put the pieces together.

You also can’t see how greatly this boy has impacted his family. We all feel such deep pride and happiness that he is part of us. We have shared in all the hurdles and all the successes. We have become individually more compassionate, more aware and more inclusive. Honestly, I think he has taught us more than we have taught him.

I’m glad you see the happy boy that he is. Because overall, he’s more than his diagnoses, his therapies, his challenges and his past. He’s a strong, courageous, fun, sensitive and beautiful child who I wanted to honor with this amazing picture. A picture is indeed worth a thousand words. Or at least 500 words, anyway!

Photo credit: BellaEva Photography

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