Apraxia Monday: Guest Post Surviving & Thriving with a Special Needs Child

By Leslie Lindsay 

Absolutely touched and honored to be mentioned in this lovely article written by Indiana mom, V. Cantwell for National Developmental Disabilities Awareness Month (March 2016):

Surviving and Thriving with a Special Needs Child

A happy, easy baby: that’s what our daughter Lauren was from the time she was born. She nursed and napped often and easily and started sleeping through the night at just over four months old. Overall, our beautiful blue-eyed daughter fit into our family seamlessly. She and I found our rhythm as mother and daughter, and life with a baby in the house was sailing along smoothly.

Somewhere before her first birthday, my husband starting seeing signs that something was wrong. She wasn’t cooing or babbling. Because he has two older daughters, he knew this wasn’t normal. When she ate solid food, she stuffed her mouth full without swallowing. And then things started to snowball… her first words were late, she wasn’t walking yet, her vocabulary was nowhere near where her pediatrician recommended. It was clear: she was missing many of her milestones. Something was wrong with our little girl’s development. But what was it? Why was this happening?

Little did I know that we were beginning our journey with Childhood Apraxia of Speech, or CAS. We had a long road ahead of us, and it wasn’t going to be easy.

Around this time, our pediatrician referred us to First Steps, Indiana’s early intervention program. Lauren qualified because of her developmental delays, which led to over a year of physical and speech therapy. When she “aged out” of First Steps at age three, the next step was to see if she qualified for a Developmental Preschool based on her speech. (A developmental preschool is a preschool especially designed for children with special needs, whether it is a disability or a developmental delay.) She qualified, so she was able to continue getting the speech and occupational therapy she so desperately needed. On my daughter’s third birthday, we strapped her little backpack on, watched her make the big climb up the school bus steps, and sent her to preschool. She literally rode a school bus (with special car seats for toddlers, but still!). We also learned that music therapy and hippo-therapy could help, so she went to music classes and horse-riding therapy. We still had no idea why this was happening: her speech was jumbled, she couldn’t say her own name, and she couldn’t keep up with kids her age on the playground.download (12)

After Lauren started at her amazing preschool, we finally got our answer. Lauren’s speech therapist thought it was  Apraxia of Speech, a neurologically-based motor speech disorder. Without getting technical, basically this means that when her brain tried to tell her mouth or muscles what to do, the message got scrambled. She knew what she wanted to say, but when the words came out, they were often unintelligible. I immediately started researching. Thankfully I found an amazing book that changed my life: “Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech” by Leslie Lindsay, an R.N. and mother with a child like mine. I knew it: this was it. We finally had our answer. We learned that CAS has nothing to do with intelligence. And we finally started to see the light at the end of the tunnel.

Lauren is now seven years old, is just as easy going and happy as when she was born, and is the greatest joy in my life. She ended up spending three years in developmental preschool. We had to hold her back and start her in kindergarten a year later than her peers, upon her teacher’s recommendation at her annual IEP meeting. (An IEP is a document that all children who qualify for special services receive, and is developed by parents, therapists, teachers and other school staff during an IEP meeting.) She still gets speech therapy twice a week at school, and probably will until at least the third grade. CAS has slightly affected her ability to learn to read and recite her numbers. But overall, she loves school, is incredibly social, is keeping up with the other kids, and even participated in dance and swim lessons last year.

Lauren Dance Recital

Our daughter was lucky enough to be diagnosed early, had access to therapy, had a family and school that were extremely involved in her development, has had an easy-going temperament which didn’t cause her to get frustrated, and is motivated to try at her therapy sessions. All of these things have led her to where she is today.

This process of mothering a child with special needs has been challenging. I am an achiever, a perfectionist, and extremely type A. I have had to accept that Lauren will do things at her own pace, in her own time. Play dates were not easy for either of us when Lauren was younger. It’s not easy to hear that your child is struggling at school during IEP meetings. What I’ve learned through Lauren’s diagnosis of CAS is that life is not always easy, and sometimes the hard things make you better: kinder, more understanding, more empathetic, more patient.

If your child is struggling with a delay or disorder of some sort, no matter where you are with a diagnosis, hang in there. Keep the faith. Be your child’s advocate and biggest cheerleader. Do the work. Be patient with both yourself and your child. And know that it does get better, I promise.

About Vanessa

indianapolis_circle_logo-200x200Vanessa is a proud Hoosier, currently residing in and raising her family on the north side of Indy in Westfield. She earned an undergraduate degree in Real Estate and a Master’s degree in Accounting from Indiana University. After graduation, she built the majority of her career at an S&P 100 company in Indianapolis. Recently she stepped away from the business world to recharge and focus on her family. Vanessa met her husband Ian in 2008, as well as his two beautiful daughters Audrey and Olivia, and the two quickly welcomed their daughter Lauren to the world in 2009. She enjoys being a “girl mom” and having adventures around town as a family. Now that she’s out of the rat race, she enjoys volunteering at the Grace Church choice food pantry and planning parties for her daughter’s classroom as a room parent. Her interests include working out, reading, anything red velvet, spoiling her two cats Gilbert and Grady and traveling to Michigan as often as possible.

[Originally on Indianopolis Moms Blog 3.28.16.]

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Apraxia Monday: Our Story~Meet Leona & Finlay

By Leslie Lindsay

I recently connected with a mother eager to share her story of apraxia. I couldn’t have been more touched by her words, her son Finlay, and the lessons we all learn from those sweet, everyday moments–the ones that take your breath away and the ones that turn your world upside down in a sparkly snowglobe. I think you’ll nod and appreciate her sentiments. Leona hails from the UK where she is a former-primary-grade-teacher-turned-full-time mummy to a son and daughter.

“It was a moment that most other parents of five year olds would take for granted.

apraxia BDWe were at a party of one of my son’s classmates. The guy in charge was asking the children their names as they came in. Other parents chatted between themselves, looking relaxed, not really taking notice of what was happening, it all seemed so natural for them. I, on the other hand, was hovering behind my son, making sure I wasn’t too far away in case I was needed to translate; to be his voice as I had been for such a long time now.

“What’s your name mate?” The instructor asked.

I waited, watching carefully as my little boy said “Finlay.” We had been working on it for months, first learning to make a “f” sound, so that we could at least use Fin (even this seemed so effortful for him at first and at times it felt like he would never be able to do it) and eventually a “l” sound. I had witnessed so many of these occasions. It started off as a kind of ‘H-i-ay’, moving on to Hin-ay, then even at Finway people still looked blank faced as my little boy persisted on trying to tell them who he was, not understanding why they didn’t know what he was saying.

But today we had ‘Finlay’. And the instructor looked back, I was there, ready to re-iterate ‘Finlay’, when he replied “Hi Finlay, my name is Matt”.

And that was it, a simple moment that suddenly felt like the best moment in my life. I felt myself getting tearful, wanting to tell the whole world about it. I don’t remember ever feeling so happy or proud before.Leona Harvey

There were so many of these moments that I wouldn’t have batted an eyelid about with my daughter. But having a child with a speech disorder makes you realise how much you take for granted.

Going to see Father Christmas was another one of these stressful times. It was okay when I was there but this year they were getting a special visit from the Main Man in school. I wouldn’t be there to help and this made me anxious. I spent a week before the day practising with him how to say ‘Ben 10 toy’. I knew that he would be able to manage this and I could feel safe knowing that he wouldn’t be asked to repeat himself several times or to have to see those blank expressions staring back at him.

When he decided he wanted a school dinner instead of his usual packed lunch, this again led to more worrying. Will he be able to ask for what he wants? He can’t say please properly yet. What if he doesn’t know what to do and needs to ask somebody?

And then there were the comparisons with other children. Hearing other children, younger children, chatting away with ease. Even his older sister began to notice the difference and would innocently pass comment. Occasions with friends and their little ones would always leave me with a sad feeling wondering why isn’t my little boy getting it? What are we doing wrong?

People make well-meaning comments, hoping, I guess to make you feel better, worry less maybe. “Oh he’ll get there in the end”, “He’s a boy, they talk later anyway” and worse still the “I talk/read/play with my little one all the time”. As if having a child with speech disorder automatically means that you must have clearly ignored them for the first few years of their lives. I may have naively (in private) shared some of these views before I had my son. Our house is filled with books, we talk all the time to our children and when I had my daughter speech came so naturally to her, but despite doing all of these things again with my son it just didn’t happen for him.

The truth is, having my son has taught me a lot of things. Not just about speech but in the last twelve months I have read every piece of research I could find. I have joined discussion forums, read books, followed up the advice of our therapists and basically become a bit of an amateur therapist (not an expert by any means but I certainly have a wealth of knowledge on a subject I knew very little on not so long ago).

That one simple moment at that party felt like the start of all of that worry, the stress, the guilt, the needing to be there listening to every conversation ready to jump in, melting away.

I will often listen to Finlay chatting away to people now, or chatting away to us at 6:30 in the morning and I can’t help but smile to myself.

I don’t need to jump in nearly as often now but I will still keep an ear open, just in case. We are not at the end of the journey yet but he has come a long way and life is already beginning to feel a little more relaxed. I doubt I will ever take these situations for granted though, we’ve worked far too hard to get there and every little triumph is a special moment.”

Many thanks to Leona for sharing her heartfelt story–an inspiration to us all.

If you are interested in guest-posting a story/proud moment/struggle of  triumph, please send me an email at leslie_lindsay@hotmail.com. I look forward to hearing from you!

ApRaXiA mOnDaY: Back-to-School

By Leslie Lindsay

It’s that time of year again…and so we load up the backpacks and lay out a freshly pressed outfit, new shoes, and the IEP.

Wait. I don’t mean to be glib, but it’s definitely on the minds of us parents who have a child with special concerns. 017

Except me. No, I am not gloating. We definitely  have been there. We *are* there. Only the IEP is no longer for apraxia. It’s for “other health impaired’ (OHI), and no I am not skirting around the issue by semantics. Kate definitely had apraxia, and it most certainly impacted her ‘access to the cirriculum’ as is the criteria for establishing an IEP. She couldn’t participate in circle time very well, reading was a challenge, so was writing.

But then something clicked. It could have been the years of speech therapy. It could have been her motivation, but most likely, it was a combination of all of that along with Kate’s developmental age finally “catching up” with her peers.

For those of you who are curious, the “clicking” happened for us when Kate was a 2nd grader (about 8 years old). There’s a reason CAS is called “childhood apraxia of speech,” it is usally limited to those early years of a child’s speech-language development. But that’s not to imply that your child will simply, ‘outgrow’ apraxia. Nope. There is a lot of work that goes on behind the scenes, namely: working directly (and exhaustively) with a qualified SLP. But parents and guardians aren’t off the hook just yet. CAS requires plenty of home practice.

At fourth grade (??!) Kate is still struggling with the remnants of CAS. Slower reader, yes. Poor speller–yep. But what she lacks in those areas, she makes up in imagination and creativity, and well-energy.

Which brings me to her next issue: AD/HD.

This is why the IEP reads, “Other Health Impairment” (OHI).” It’s the combination of residual apraxia and AD/HD that have given her that–cringe–label.

Back up a week and some change. We head over to the elementary school for the meet-and-greet welcome night. We peek into the library, the old classrooms of grades past, and then make our way to the 4th grade wing. Kate unloads her school supplies and shyly checks out the other students. Ah! A friend.

Her teacher comes by, hand outstretched, a big grin on her face as she introduces herself. And you know what? Kate smiles in response and in a clear voice says, “Hi. I’m Kate.”

A surge of pride swells within. Did I even mention apraxia? No. I can safely say that this little beast is well behind us.

Coming Up:

  • We will be taking a hiatus from apraxia on Mondays while shifting our efforts to AD/HD. In fact, it’s one of the most cited co-occuring disorders with apraxia/CAS. Those posts will run on TUESDAY.
  • There will be NO MORE “Apraxia Monday” blogs. But you can still find me on Twitter, @LeslieLindsay1 and also on the companion FB page, SPEAKING OF APRAXIA where I’ll continue to post blurbs, photos, updates, quotes, etc. on/about apraxia.
  • I’m always open to fresh, new voices! If you have a story, insight, worry, etc. about apraxia and would be interested in being a guest blogger, by all means, give me a a holler at leslie_lindsay@hotmail.com
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ApraxiA MondaY: Summer Re-run Series–10 Things I Wished I’d Known

By Leslie Lindsay

This post first ‘aired’ in June 2013 on Playing with Words 365 hosted by Katie Yeh, CCC-SLP. Here it is again in case you missed it.

10 Things I Wished I had Known About Apraxia

When I look back over the years of our apraxia journey, I am reminded of the simple truths I wish I had known long ago, wholesome happy moments that really have little to do with apraxia and more to do with being a mother, a child, and a family. Here goes:DSCF2628

  • A child is a child no matter what. I may have wished for a perfect child who was above average in all their pursuits, but what fun is that? Perfection has its downsides; I’d rather a child full of whim and vigor, a child who needs to overcome obstacles to understand that not everything is easy-peasy achievable in this life.

 

  • I am a mother first and an advocate second. It may seem as if there’s little differentiation between the two, but I like to think that first I became a mother; providing snuggles and love, safety, food, shelter and clothing. And then I became an advocate, seeking ways to help my child be the best she can be in terms of her speech development.Kate Gymnastics and Graduation 013

 

  • As a family unit, we work together. Apraxia is a family affair. We learn, we help, and we interpret together. Sure, it can take its toll on us just like everything but it’s important that we all pull together to help our Team Apraxia.

 

  • Extended family is important, too. Don’t forget grandma and grandpa. Educating them about apraxia and how it affects your family is key, no matter how far or close you are in proximity. Extended family can provide a wealth of support—emotionally, physically, financially, and practically. Perhaps grandparents can assist with getting your child to and from speech therapy…maybe they have stories to share of past generations with speech troubles. Try educating them on apraxia and having them work with your child to practice their sounds. Maybe you just need to bend their ear.

 

  • Speech Apraxia is serious, but it’s not the end of the world. When I first heard the term ‘apraxia,’ I didn’t know what to think. Was this a big deal, a little deal, or somewhere in the middle? Was it like stuttering or a lisp? I was really in the dark. Had my diagnosing SLP told me, “this is serious, but we can work with your daughter to make it right,” I may not have freaked out.

 

  • Take what you find about CAS (Childhood Apraxia of Speech) on the Internet with a grain of salt. That, said there are a lot of great resources on the Internet…and some not-so-good resources. Be critical. Don’t assume that just because you read it on the Internet, it’s the be-all-end all. Ask questions, look at multiple sources, go to the main source. And beware of well-known, reputable websites as well. When I hopped on for the first time, I was overwhelmed and panicked. Would my child ever be able to talk? Would she ever be considered “normal?” I catastrophized, and wished I hadn’t.

 

  • It’s okay to get your child involved in activities with other kids. Encouraged, even!! At times you may be reluctant to keep your child away from social experiences in which he is required to speak (birthday parties without you, community education, preschool, library programs, sports, dance). While it may seem like you are being an advocate for your kiddo, it may actually hinder his ability to be in control of his own apraxia. It teaches self-monitoring, independence, and self-actualization. Equip your child with a few functional phrases beforehand, though (Eg.,“Wait!” “My name is ___,” “Hi,” “Want to play?” “Okay!” If your child is more nonverbal than that, teach appropriate body language like nodding or shaking her head, smiles, waves.)  2a (1)

 

  • It’s okay to ask for help. When you feel stuck, reach out. You may find that a group, your child’s SLP, or special needs teacher can help you identify ways to make things easier and better for you, your child, and your family. A tutor, babysitter, student (speech pathology, special/education, nursing, or retired SLP) can be a life-saver when it comes to practicing speech work, or just respite care. It takes a village to raise a child!

 

  • If you have other children, remember they need you, too. If you need to bring other children along to the speech waiting room, bring something fun the two (or three) of you can do together while you wait. Coloring books, reading, a small craft, puzzles, a quiet toy; or consider a quick dash to the playground or ice cream. You are just providing different needs for different children.

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  • Childhood Apraxia of Speech Does Get Better! Not all kids will gain speech growth in the same manner, but they do get better. This is a wonderful thing! There’s a reason it’s called ‘childhood’—the duration of CAS is typically birth thru 8 years. It could be a little less or a little more, depending on your child’s personality, determination/motivation, overall intelligence, access to therapy, home practice, and co-occuring disorders like AD/HD, autism, Down’s syndrome, anxiety, etc. Sure, your child may slip up from time to time on challenging words, when they are tired or stressed, or learning a new set of vocabulary (math terms, history, science), but overall your child’s speech should be on-par with peers around age 8.

Most of all, I’ve learned that love and time really can “cure” a lot of things.

For more information, look for Leslie and SPEAKING OF APRAXIA on:

Bio: Leslie Lindsay is a former Mayo Clinic Child/Adolescent Psychiatric RN and a mother of a daughter with CAS. She is also the author of the Reader’s Choice Finalist & ForeWord Review Book of the Year Finalist SPEAKING OF APRAXIA (Woodbine House, 2012). She lives in Chicagoland with her family where she is busy working on her next book, this time in the fiction genre.  cropped-9781606130612.jpg

ApraxiA MondaY: Summer Re-Run Series: How your child can help YOU learn

By Leslie Lindsay, R.N., B.S.N.

Kids have a way of warming their parents’ hearts. They make them laugh, force them beyond their comfort zone, and give them a surge of pride.   Yet, children can also confuse and baffle.

When my then-2 ½ year old daughter, Kate was given the diagnosis of childhood apraxia of speech (CAS), I had little idea what that really meant, or how I might grow into a better parent from all of this. But I did. Kate taught me many valuable lessons.  Here are some common speech-language pathology “rules” in regards to CAS—and why those rules are so important. But, the ‘best’ message is the one your child may teach you.017

“Speech Rule” #1: Have your child repeat, repeat, repeat! Movement repetitions build strong motor planning/programming/gestures. Can you say that again?

 What your child might teach you:  Patience is the key. If I don’t repeat the words you just said, don’t give up on me. I am new to this and need some time to digest the information.

“Speech Rule” #2: Provide lots of opportunities throughout the day to get your child to talk or vocalize—about anything. Your child will begin to see that communication is indeed a fun part of life. What color is that dog? Is the cup big or small?

What Your Child Might Teach You: It’s great that you want to work with me and help, but sometimes I get tired. Sometimes I just want to be quiet. Give me some down time, too. And most of all—don’t make me ‘perform’ in front of Grandma and Grandpa or the neighbors. I’m still pretty self-conscious about my speaking abilities—or lack thereof.

“Speech Rule” #3: Be goofy and funny. If you are relaxed and your kiddo is relaxed, words will come easier. Ask nonsensical questions to elicit a response, give silly options.

What Your Child Might Teach You: It’s good to chill-out sometimes, mom and dad. You take things too seriously sometimes. I love when we laugh together, we should do it more often.

“Speech Rule” #4: Make talking and speech practice more about your lifestyle and less about “sit and speak” time. In this sense, you “work it in” to your routine.

What Your Child Might Teach You: I spend enough time in speech and school. If you make me sit at the dining room table and go over speech words one more time, I might scream. If you make speech fun and functional then I just might go along with you.

“Speech Rule” #5: The more talking feels like work, the less willing your kiddo will be to do it.

What your Child Might Teach You: When you are worried and anxious about my talking, I feel it too. That doesn’t do either of us any good. Don’t make me ‘work’ for my snack, or something else I want. If I can’t say it perfectly, don’t stress; but do push me along sometimes. You’ll know when I’ve had enough.

“Speech Rule” #6: Imitation is huge, too. “Can you say what I say?” Try it. If imitation is too hard, try doing it in unison. Remember all of the chanting our grandparents did in school for memorization? Even singing the ABC song is a form of imitation in the form of chanting memorization. [image source: http://www.playriffic.com on 8.11.14]

What your Child Might Teach You: I like when we sing songs together. It’s fun and silly and helps me feel confident. Plus, I think it’s cool when you teach me a new, grown-up word like ‘independent’ or ‘gymnasium.’ It’s fun to try!

“Speech Rule” #7: You are mom or dad first. You do not need to become your child’s speech-language pathologist. Kids are smart. They will know what you’re up to and won’t participate if you act too much like their SLP.

What your Child Might Teach You: I totally get that you want me to talk more. But I want more time just to be your little girl/boy. I might really like my speech-language therapist, but don’t worry, mom and dad: YOU are the center of my universe.

Leslie Author PicBio:Leslie Lindsay is a former child/adolescent psychiatric R.N. at the Mayo Clinic. Her daughter, Kate is a bright and creative 2nd grader resolving from childhood apraxia of speech (CAS). It is because of her that Leslie wrote the first book designed for parents on this complex neurologically-based motor speech disorder. Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech (Woodbine House, 2012) is as much as labor of love as it is a resource to help others along their apraxia journey. She lives in Chicagoland with her husband, two daughters, and a basset hound where she writes full-time. Follow her blog, http://www.speakingofapraxia.com about all things early childhood and apraxia. Hop over to http://www.leslielindsay.com for author interviews, literary things, the writer’s life. “Like” her Facebook Page at http://www.facebook.com/pages/Speaking-of-Apraxia-A-Parents-Guide-to-Childhood-Apraxia-of-Speech/235772599837084?ref=hl. Follow her on Twitter at @LeslieLindsay1cropped-9781606130612.jpg

 

ApRaXia MoNdAy: Summer Re-Run Series-Complementing your SLPs Efforts

By Leslie Lindsay

This was originally written as a guest post for a fellow SLP blogger, but there are so many gret things in this article I think you’ll appreciate as you team up with your child’s SLP.87c76-410_1target_group_kids_apparel_photography_los_angeles_mike_henry

Giving my Child a Voice: The Role of the Parent in Childhood Apraxia of Speech

By Leslie Lindsay, R.N., B.S.N.

Throughout human history, and long before, mothers have been making sacrifices for their young. They tend to them, they groom them, they take care of their basic needs. And so when my then-2 ½ year old daughter, Kate was given the diagnosis of childhood apraxia of speech (CAS), I had little idea what that really meant, or how I could help. Aside from the fact that I would be schlepping my daughter to and from speech therapy, I was dumbfounded. I shrugged, rolled my lips into a tight line and accepted the challenge; I would give my daughter the gift of voice—even if I didn’t know how.

Of course, the pediatric speech-language pathologist (SLP) we worked with privately for the next few years, coupled with the special-education preschool Kate attended five days a week really helped her thrive, socially and academically. I wasn’t carrying the brunt of apraxia alone, yet at times it felt that way. It really does take a village to raise a child. Along the way, I learned some valuable lessons, insights, and therapy ideas that may also help you along your apraxia journey.

Parenting Primer

Here are a few things you need to keep in mind as your “golden rules” in working withyour child with CAS:  

  • Have your child repeat, repeat, repeat! Movement repetitions build strong motor planning/programming/gestures. Can you say that again?
  • Provide lots of opportunities throughout the day to get your child to talk or vocalize—about anything.Your child will begin to see that communication is indeed a fun part of life. What color is that dog? Is the cup big or small?
  • Be goofy and funny. If you are relaxed and your kiddo is relaxed, words will come easier. Ask nonsensical questions to elicit a response, give silly options.
  • Make talking and speech practice more about your lifestyle and less about “sit and speak” time. In this sense, you “work it in” to your routine.
  • Team up with your SLP. Have her give you ideas for homework and report back to her. Let her know what your kid does well at home and see if it works as well in the clinic. Think of your SLP-parent-kid connection as a circle with no beginning and no end; make it appear as if you are driving a fancy automatic car—smooth and effortless, even if it’s really a jumpy 5-speed jeep.
  • The more talking feels like work, the less willing your kid will be to do it.
  • Imitation is huge, too. “Can you say what I say?” Try it. If imitation is too hard, try doing it in unison. Remember all of the chanting our grandparents did in school for memorization? Even singing the ABC song is a form of imitation in the form of chanting memorization.
  • You are mom or dad first. You do not need to become your child’s speech-language pathologist. Kids are smart. They will know what you’re up to and won’t participate if you act too much like their SLP.
  • Your goal is to complement your SLP’s efforts in your own home. Talk to your SLP about a reasonable amount of home practice. This will also depend on the age of your child. As one apraxia parent named Mike shared, “An SLP is like a personal trainer at the gym. You go, your trainer works with you for an hour and teaches you things to do on your own, but it’s up to you to do the rest.”7f (1)

Once you have a good sense of these basics, it’s time to start incorporating moments in your daily routine which will help your child see that communication is indeed important and valuable. No worries, you don’t have to do anything fancy or special. Most of these ideas are free, or low-cost. Chances are, you already have a lot of toys, materials, and props at home that will spark your creativity. Remember, just about any toy or object can be used as a “therapy” tool.

  • Have a family game night. Traditional favorites will do the trick.The speech payoffs here: turn-taking, counting, requesting, being a good sport, and other communication opportunities.
  • Visit your public library. Let your child find some books of interest and then read them to her. Speech payoff: child-directed learning, introduction to new vocabulary, 1:1 time with you in which you are modeling pronunciation and articulation. You might even hear some sounds or word approximations from your child!
  • Experience and connect with nature. Speech payoff: identify and describe what you see, hear, and smell. Think holistically—this is more than just a walk in the park.
  • Exercise by biking or sledding, walking, or swinging. Speech payoff: vocalizations and words are often heard with movement. Exercise also increases self-confidence, which these kiddos need more than anything. Children with CAS often crave movement.
  • Do some art. Speech payoff: Besides the 1:1 time all kids need, it also unleashes creative potential and gives you something to talk about: “What color should we make the tree?” Practice saying “tree” or “green” while you’re at it.
  • Listen to music. Speech payoff: Kids need physical movement, and what better way to get them to move than with some rockin’ tunes? Encourage singing; even if they can’tget the lyrics out, they can hum along. Plus, music has a positive effect on mood—even yours!
  • Bake cookies or cupcakes. Speech payoff: identify ingredients as you toss them into the bowl, have your child repeat the words (flour, sugar, butter, etc.) if she is able, talk about shapes as you roll out sugar cookies. Share your cookies with friends and neighbors and let your child do some of the talking—if possible—when the two of you deliver the goodies. It can be as simple as saying, “cookie” or “bake”–even an approximation will do.

 And when it’s all said and done (yes, pun intended), you can sit back and be proud, not just of your child—but of your efforts as a parent as well. Who knew you had it in you?! Thanks for giving your child the gift of a lifetime; the gift of speech.

For more information, see SPEAKING OF APRAXIA: A Parent’s Guide to Childhood Apraxia of Speech (Woodbine House, 2012) available thru Amazon.com, Barnes & Noble (in-store and on-line and thru http://www.woodbinehouse.com)

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Apraxia Monday: Summer Re-run Series-“You Just Gotta Practice!”

By Leslie Lindsay 48e07-kids_stars_cartoon

This is one of my favorite apraxia memories. Read on and find out why:

Apraxia…You just gotta practice!”

By Leslie Lindsay

I am thrilled to have the opportunity to be a guest blogger on Haley’s blog, “Say What, Y’all?” Not only do I love the title of her blog, being a former Missourian myself, but I can totally relate to having said this euphemism so many times in my “career” of being an “apraxia mom.”

You won’t soon forget her. The red hair and blue eyes the size of saucers will linger in your memory. So, too will the fact that she is as fire-y and energetic as that copper hair that cascades down her back, framing her freckled face with possibility.

And when you hear her speak, you may have an inkling that she once suffered from moderate to severe childhood apraxia of speech (CAS), or you may be none the wiser. Although Kate is a bright, creative, and eager soon-to-be 2nd grader, she has overcome a road block most of us never have to deal with: a struggle to communicate expressively.

I won’t bore you with the early days of suspicion and diagnosis and our first experiences with an SLP, but I will give you just a teensy bit of background: Kate didn’t say much of anything—expect a friendly “hi”—for the first 2 ½ years of her life. She was diagnosed with CAS at that time and began an extensive speech therapy regime 2-3 times a week for about 2+ years. She is speaking just fine now—with a few minor backslides here and there.WP_20131103_008

When I was in the midst of writing, “Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech,” (Woodbine House, March 2012), I developed and facilitated a small parent education group called “Small Talk: All About Apraxia” in the Chicagoland suburbs. I wanted to connect with other parents also walking the apraxia path, hear their ideas and dilemmas, and facilitate their journey. On one occasion, I brought Kate along. Actually, she asked to join me!

“Mom, can I go to your [a]praxia group?” She inquired one afternoon.

I shrugged and bit the inside of my cheek, “Well, I guess so.” I replied. “But it might be a little boring for you…a bunch of mommies talking about apraxia…”

“I don’t care. I want to hear what you’re talking about,” she replied.

And so she came. But, beforehand, I asked her to think about what she might say to these parents. She pondered that a moment and then rushed off to her room where she sat at her desk drafting out a speech. She presented it to me just before we headed out that evening. It read:

“I have upraxea [apraxia]. It is not seryous [serious]. All you have to do is practis [practice] your words more. Don’t wory [worry]. Your kids will be ok.”

Pride coursed through my veins. I hugged my daughter and praised her for being able to communicate her thoughts on the disorder that has plagued her for most of her life. It’s not every child who has that insight at her age.

Once at our “Small Talk” meeting, I introduced Kate to the group. The mommies smiled encouragingly as she read from her paper in stilted English, much like we might if we were visiting a foreign country and reading from a Berlitz book. They beamed and applauded afterwards, some even dabbing their eyes.

You see, it took a lot of courage for her to come to the group that evening and speak to a group of adults she didn’t know about something so intimate and close to her—to us as a family. I couldn’t have been more proud.

As usual, she was one to something. Having apraxia really just means that one needs to practice speaking more than others. While I don’t want to oversimplify things—it’s hard, long practice—but if we as parents can reframe the diagnosis of CAS to “a-word-practicing-disorder,” we may have a lot less stress and anxiety.

Today—literally—we were talking about some words that are troublesome for Kate. She said, “I can’t really say shoulder. It sounds like soldier. And what’s a scone, anyway? You mean cone, right?”   As a family, we laughed—we agreed—there are some words that are hard to say. But if you practice them, you just might learn to say them.

“ Apraxia. You just gotta practice.” –Kate L.

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aPrAxIa MoNdAy: Summer Re-run Series

Reading Green Eggs and Ham with Apraxia

By Leslie Lindsay

       I don’t know about you, but I love books. I love kids. And when one combines the love for children and literature, what often results is the abundance of words. And perhaps the proud moment of announcing, “Hey—she can read!” a year of two ahead of schedule.

But not if you have a child with apraxia.*

Even as a baby, Kate rarely babbled and cried; she was beautiful and unique with red hair and bright blue eyes. She was, in a word, “perfect.” So why were we worried? After all, she could understand everything we said, even the big words. And what was so wrong with having a quiet, happy toddler?

And so we read. As parents we read parenting books about late-talking children. We read about speech development and ways to stimulate our child. We read books to Kate. Simple board books by Dr. Seuss and Sandra Boynton that had the happy cadence of alliteration and rhyme. We pointed out illustrations in the book, “Oh, look-y here…can you see the birdie? Can you say bird?” We engaged in dialogic reading with our daughter, “What do think will happen next?” And nothing.

Sure, she understood everything we said, even the hard words. We could tell because she would be able to perform simple directions like, “go get your shoes, we’re going for a walk.” But still, nothing. At least not any expressive language.

Kate was diagnosed with childhood apraxia of speech (CAS), a neurologically- based motor speech disorder in which kids know what they want to say, yet they can’t coordinate the complex movements required to speak intelligibly. She was 2 ½ years old. What resulted instead was a lot of pointing and gibberish.

Fast-forward five years, and you will see that Kate has overcome a considerable challenge. She is now a normally-speaking soon-to-be 2nd grader. Sure, there were struggles and years of speech therapy.

Our speech-language pathologist (SLP), mentioned that children with CAS have a particularly difficult time with identifying and composing rhymes. Why exactly this is, is speculative. Some say it has to do with the overall motor circulatory of the brain, the “wiring,” if you will; or the abstract arrangement of sounds and letters, perhaps it’s the mind-body connection, or simply being a visual versus auditory learner…in any case, it’s a challenge.

But just this past week, we pulled out Dr. Seuss’s Green Eggs and Ham. My husband handed the shiny orange book to Kate at bedtime,** “Here, you read this one.” She looked at her daddy with wide eyes, “You can do it,” he coaxed.

         She sucked in a deep breath and rolled her lips into a tight line, “I am Sam,” she began.

My eyes welled with tears. Her voice a little choppy (prosody is something she will likely always struggle with), a few stumbles here and there, and a long pause about half-way through, I cheered her on in my mind. Finally, she sighed, “I can’t do it anymore.” We egged her on (sorry, couldn’t resist), “Yes. You can do this.” (We ended up alternating pages. Reading aloud can be very taxing for children with apraxia).

And you know what? She read that whole book. Say, I do like reading and rhyming, Kate-I-am. (*Commonly known as Childhood Apraxia of Speech (CAS), or “dyspraxia of speech” in the U.K. and elsewhere. **In retrospect, it would have been best to have Kate attempt a challenging rhyming book at a time of day when she is likely to be more alert).

   Try it at home:

  • Remember, you are your child’s cheerleader. Let them know you care and support them, but don’t make it too easy. Challenging your children to the point of feeling slightly uncomfortable is okay. It means they are growing (and you are, too)
  • Get yourself to the library. Ask a children’s librarian for some simple rhyming books. Even if they seem a little “baby-ish,” read them to and with your child with apraxia. Practice, practice, practice! (Some titles to look for, There’s a Closet in My Woset by Dr. Seuss, ‘Twas the Night Before Kindergarten (1st grade edition also available) by Natasha Wing, BOB books).
  • Remember, there is a difference between rhyming books (cat and mat) and predictable/repetitive books (it’s pretty clear that you know what will happen next; the same phrase pops up every few lines (Goodnight Moon by Margaret Wise Brown) and wordless books (there is no text; you and your child create your own story as you study the illustrations; Good Dog, Carl byAlexandra Day) and cause and effect books (If You Give a…. series by Laura Numeroff) All types of books are important to a child with CAS.
  • Extend your reading activity to make it whole-body experience. Act it out (as in charades), whip up a batch of green eggs and ham or some chocolate chip cookies. Have your child draw a picture or make her own “book” related to what you just read.

Leslie Author PicBio: Leslie Lindsay is former child/adolescent psych R.N. at the Mayo Clinic-Rochester. She is the mother of two school-aged daughters and a basset hound. Lindsay and her family reside in the Chicago suburbs where she writes full-time. She is the author of “Speaking of Apraxia: A Parents’ Guide to Childhood Apraxia of Speech”(Woodbine House, March 2012). You can also follow her on Twitter @LeslieLindsay1, the “Speaking of Apraxia” Facebook page, as well as her sister blog, http://www.leslielindsay.com

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[“Green Eggs & Ham” cover image retrieved from www.fredrickville.com on 7.6.14, interior page from www.campacademia.com on 7.6.14, Sandra Boynton books from hecticharmony.net  on 7.6.14]

ApRaXiA mOnDay: Summer Re-Run Series

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Talk of the Town: Gossip Queen & Child Development Expert Answers your Most Pressing Questions.

Today’s Topic: Childhood Apraxia of Speech (CAS)

Monday, July 16th 2014

By Staff Writer

Dear Miss Talks-a-Lot:

 My 3 year old son has so much difficulty talking. It’s like he knows what he wants to say, but he can’t quite get the words out. Everything else [developmentally] seems to be right on target, yet he just jibbers and gestures. What could be going on?

–Frustrated in Colorado

Dear Frustrated in Colorado:

It sounds like your son may be suffering from Childhood Apraxia of Speech (CAS), this neurologically based motor speech disorder is characterized by the inability to connect thoughts with verbal output. It’s as though the child knows what he wants to say, he just cannot coordinate the muscles of articulation with his brain. Often, kids with CAS will gesture or create their own words and phrases to get their needs met. Your best bet would be to have him evaluated by a qualified speech-language pathologist(SLP) who has a background in childhood apraxia of speech. From there, you will receive an official diagnosis, a treatment plan, and suggestions for next steps.

Dear Miss Talks-A-Lot:

I have heard of this new book, SPEAKING OF APRAXIA and wonder what your thoughts are?

–Curious Mom in Missouri

Dear Curious:

So glad you asked! SPEAKING OF APRAXIA was published in 2012 by Woodbine House, a leader in producing quality special needs books for parents, professionals, and caregivers since 1985. It is my understanding that it is the first non-academic book designed exclusively on the subject of CAS. Written by mom and former child/adolescent psychiatric RN from the Mayo Clinic, this book embodies everything the author, Leslie Lindsay thought about, worried about, and learned about during her course of raising a daughter with CAS. She wanted a book when her daughter was diagnosed, but was disappointed in the options available. Plus, she wanted to help others walking the same path. SPEAKING OF APRAXIA truly is a labor of love. It has received national and international recognition from SLPs, parents, and educators. A Georgia-based parent says:

“A comprehensive encyclopedia on childhood apraxia of speech (CAS) & self-help book for both parent and child. In addition to having over 400 pages full of facts, Leslie chronicles bits & pieces of her own daughter’s journey with apraxia.”

Anita, a speech-pathologist in Sao Paulo, Brazil shares, “Few professionals know Apraxia. Many children are without diagnosis, teachers and educators and parents completely unaware. I bought your book and loved it, it is very practical and thorough and sure I can use with parents of my patients….surely, it will be very useful for all children with Apraxia.”

For more information, or to obtain your own copy of SPEAKING OF APRAXIA (Woodbine House, 2012), head over to http://www.amazon.com, http://www.barnesandnoble.com, (in-store, too), as well as http://www.woodbinehouse.com

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[this is a mock newspaper article. The quotes are real, but names have been changed to protect privacy.