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.
And why do I share this?
Since you are about to embark into an exciting profession of working with children and their families, I’d like you to have an inside view of what it’s like to raise a child with CAS.
· We are hurting. We feel a sense of loss in our child’s lack of verbal communication. We are grieving. We didn’t want this to happen. Heck, most of us don’t even know what CAS is!
· We are frustrated. We don’t know what we are doing wrong (some of us blame ourselves on our child’s inability to speak). It’s hard to live a life where we only hear our child(ren) point and grunt to get their needs met.
· We feel all alone. It’s not every day you run into someone else who is also struggling with CAS. It often feels like it is “us” against “the world.” If you know of anyone else who is open to connecting for play dates or support groups, hook us up!
· We have a lot of other concerns. It may be that we have to take off work early—or stop working altogether to make sure our child gets to speech therapy. Money may be tight. Our insurance may be giving us a hard time. The demands of raising a family, running a household, and dealing with apraxia may have taken a toll on our relationships.
· We have a full, busy life. Apraxia and speech therapy is a part of our life, but we are many things to many people. Please respect our time.
· Deep down, we just want to have a “normal” kid. When we overhear a precocious 3-year old chatting with his mommy or daddy at the local park or coffee shop, our heart breaks. “Why can’t that be my kid?!”
· We worry. Will this ever get better? Will my child be able to talk—when? What do I need to do?
· We want to help. Let us into your speech-pathology world. You don’t have to give away all of the secrets to the trade, but let us be your partner.
As a professional SLP, here’s what you can do to help smooth our path:
· Give us homework, tips, ideas, and more information on childhood apraxia. Some folks may request this, others might not know what they need or want. Feel us out. If you come across something in your professional life you think will help, but all means, pass it on.
·Treat us with respect and compassion. We know a lot about our children and we want to help them.
· But don’t tip-toe around our feelings. Go ahead, lay it on me. Tell me that CAS is serious and complex and can take years to remediate. Tell me, too that you will do all you can to help my child learn to speak verbally and that we are in this together. I need that right now.
· Ask us about our home life. We may have some inside tips to help you with our child in therapy. For example, she really does get scared of bubbles; please do not blow them with her. She can’t go anywhere without her favorite stuffed puppy. Let her bring him to therapy and perhaps incorporate him into your activities.
You see, as a former R.N. who worked with children day and night in an inpatient child psychiatry program at the Mayo Clinic, I know that children and their families matter. We are not simply a diagnosis who needs treatment. We are real people, with real feelings and real lives.
It is because of my daughter Kate that I 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.
The book is comprised of over 300 pages of tips, ideas, research, and more on various topics related—not just to CAS—but other speech disorders from suspecting a problem to getting treatment (what that treatment consists of), school challenges, what you can do at home, family coping, child coping, networking, advocating, and co-morbid conditions. Sprinkled throughout are quotes from parents speaking out about apraxia—what helped, what mattered, and what challenged them.
Speaking of Apraxia is a must-have for every practicing pediatric SLP. Read what others are saying:
" I was so excited to open up my Advance for SLPs magazine today and see your book advertised! Your ‘baby’ is out there. I wish you lots and lots of success with it!" --R.W.
An SLP in Missouri shares this: "I already have a couple of families in mind that I am excited to tell about Speaking of Apraxia. What a great resource!"
"I could feel your blood, sweat and tears as I flipped through the pages (wiping my eyes).Outstanding! I just shook my head in amazement...I am in awe and I am still kind of speechless...really! This book will be just one of your legacies...well done!!"
--T.K.P., CCC-SLP in Minnesota
And remember, our kids need your special touch. For without the “magic” of dedicated SLPs, our children with apraxia wouldn’t be able to make the gains they do. Thank you.