BIG INSPIRATION IN A tiny PACKAGE- how a little girl with CAS taught me to believe and persevere.

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I received the phone call after recently rejoining the workforce from  maternity leave with my second child.  I remember exactly where I was when the service coordinator called to ask if I would consider joining the team of a  2 year old diagnosed with Childhood Apraxia of Speech (CAS) whose parents are both special educators.  Whoa!  Talk about pressure!  The family was requesting me because of a recommendation they had received from another family I worked with whose son had CAS.  I had recently developed an interest in the speech disorder after serving two other children with suspected CAS.  I took a couple of courses and settled on a therapy kit to address CAS but like they say, “experience is the best teacher” and I wanted some of that.  So I agreed to be Camryn’s speech therapist, anxious to learn more about CAS through my treatment of her.  Although I didn’t know it at the time, Camryn would end up being  MUCH more to me than just experience.

I first met Camryn one Spring evening at her home.  She was a pint-sized toddler full of spunk and cheer.  Our first interactions let me know it was going to be a long road for her.  I explained to her parents that her speech therapy would be more like a marathon than a sprint.  They asked me questions like, “Will she ever talk ‘normal’?“ and “Will this be something she will struggle with for the rest of her life?”.  All valid, good ‘concerned parent’ questions, all of which I could not answer.  And so began my journey with Camryn, me teaching her-her inspiring me!

ASHA (American Speech-Language and Hearing Association) defines Childhood Apraxia of Speech (CAS) as a motor speech disorder where children have difficulty saying sounds, syllables and words in the absence of muscle weakness or paralysis.  The brain has difficulty planning the movements required of the tongue, jaw, lips, etc. needed for speech production.  The child knows what they want to say but are unable to get their mouth to move in a way to produce the words.  These children require frequent, intensive speech therapy to improve and sometimes CAS co-occurs with feeding difficulties and/or cognitive delays/learning difficulties.  There is little data available reporting the prevelance and incidence of CAS however, some sources suggest that 1-10 in 1000 children have the disorder.

When I started with Camryn she could say /s/ and /ah /.  That was it.  Because of her sweet, laid back personality she wasn’t yet experiencing much frustration.  Plus her mom had been very proactive in teaching her sign language, which gave Camryn a way to express her immediate desires.  We started with 2 sessions per week and continued on with this schedule for a few years.  Her improvement was slow and steady with some bursts of progress here and there.  While me being there was important to guide her therapy along, the biggest job was left in the hands of her family.  I stressed to them that her progress would be hugely dependent upon them practicing with her EVERY single day.  Their dedication was obvious when I would come week to week and witness her saying new sounds and syllables with less effort.  Each sound, syllable and word Camryn said was earned.  Repetition, practice, dedication, perseverance and determination were required for her to do something the rest of us take for granted.  Camryn’s challenges were huge.  What I was asking her to do week to week in therapy was extremely difficult but she didn’t give up.  When I think of the challenges Camryn has faced over the years I am ashamed to think how quick I am to give up on much less challenging tasks.  She has never backed down, only risen up.  And her progress and successes are proof of that!

 

It’s been 5 years since I had the pleasure of meeting Camryn and her family. Today she is an aspiring gymnast who attends kindergarten, speaks in 5 word sentences, ask questions and carries on lengthy conversations.  She has inspired me and challenged me beyond my expectations.  She is my success story; my proof that hard work and a positive attitude can only lead to awesome achievements!  Camryn will go far in this world inspiring others to rise up to whatever challenge they may be facing.  I am proud of her, and her family!  And Camryn will forever remain one of the strongest, bravest, FIERCEST girls I know!

 

If you are concerned that your child, or a child you know, may have CAS, contact a speech-language pathologist to request an evaluation.  For more information on the disorder visit:  www.asha.org and www.apraxia-kids.org.

Navigating Special Education in the School Setting: What Parents Need To Know

Child Guide Magazine is a great source for information and to find fun activities! Milestones & Miracles is proud to team with this great FREE publication by writing a column geared toward the Special Needs/Differently Abled Population.  The article below is our contribution to the FALL 2013 Issue which is filled with great “Back To School” Information. Grab yours today or view online at: http://issuu.com/childguidemagazine/docs/septoct2013cgweb

 

Are you a visual learner or auditory learner? Do you learn best by actually doing? Do you need a quiet room to retain what you are reading? Each one of us learns in unique ways. Many good teachers recognize learning styles, strengths, & challenges and accommodate the children within their classrooms. But what happens when simple modifications aren’t enough? Some children need additional supports and services to make the educational experience a positive one. And while learning about and implementing those services can seem very intimidating for parents, the process does not have to be.

Students 3 years of age and older that need supports and services in the public school setting receive them under Part B of the Individual’s With Disabilities Act (IDEA). This is a Federal Law that ensures special education services. If you are having concerns that typical classroom strategies are not meeting your child’s needs, speak to his/her teacher early. Sometimes, simple changes to a daily routine (such as changing seat location or providing a check list to stay on task) can make a huge difference.

If simple changes are not adequate, you or your child’s teacher may request testing to further identify strengths and challenges. The results of testing are reviewed at an eligibility meeting, usually held at the school, with parents, teachers, and other professionals (therapists, coordinators etc.) in attendance. If your child is found eligible for special education services, you can consent to move forward with an Individualized Education Plan or IEP. Parents, teachers, and others who have knowledge of your child’s specific needs such as therapists, nurses, psychologists and other professionals help create the IEP. You can invite others who know your child well and might help with the process. An IEP is a legally binding document that includes specific goals for your child, services and frequency of those services to support goals, & any additional materials needed to support your child (examples include special classroom materials, customized seating, or communication devices).

The IEP serves as the “map” to guide your child through the educational journey. It must be reviewed yearly, but can be reviewed more frequently per your request as your child changes, progresses, or new challenges arise. It is important that parents understand IDEA and their child’s rights under it. Seek out the assistance of an IEP advocate (counties hire these individuals) and ask to schedule a meeting to learn more and review policies that protect your rights. Each state develops a policy that outlines procedures for defining child find (how the state finds children that need to be tested), eligibility, and services as well as outlining parents’ rights and responsibilities. Refer to your own state’s Department of Education for more information on your specific policy or for support on learning more about individuals and organizations that serve to support parents through special education.

It is also important to understand that the IEP serves to meet your child’s EDUCATIONAL needs vs. MEDICAL needs. For example, if a child with Cerebral Palsy has tight hamstrings and an atypical walking pattern but can get around the classroom efficiently and safely, he/she would benefit from physical therapy, but would be served in a therapy clinic vs. a school setting in most cases.

Someone who knows both sides of the special education world in the public school arena is Tracey Parks. Parks is a 5th grade teacher at Tomahawk Intermediate School in Hedgesville, WV. While she has taught students of all learning styles and abilities for 18 years, she has first hand experience being a parent navigating the IEP process with her 9 year-old daughter Jordyn. She offers these wonderful tips to parents:

• COMMUNICATION IS KEY: Communication early and often. Request a meeting with all teachers who will be interacting with your child very early in the year (before the first conference) to share what works best for your child. Use a simple communication journal (could even be on a number system, such as 1= good day). Teachers have little time to write daily lengthy notes, but sharing simple information daily can be helpful to both parent and teacher. Parents might also consider sharing important things daily such as deviations to sleep routines, digestive issues, changes at home, or illnesses as they might impact the child’s day.

YOUR CHILD NEEDS YOU TO SHOW UP: IEP meetings are your chance to learn about your child from the people who spend hours with him/her! Make arrangements if possible to be there so that you can listen and learn, share your opinion and ideas, and brainstorm as part of the team. Your participation shows your child’s team that you are sincere about working with them for the benefit of your child. If you can’t attend in person, request a phone conference.

• ASK QUESTIONS/MAKE SUGGESTIONS: Don’t be afraid to ask questions regarding your child’s education. A good teacher should be willing to take the time to explain and answer. An example is asking for a second set of books so you can help your child at home. If you know of something that benefits your child at home or in other settings, such as during private therapies, don’t hesitate to share with your child’s team.

• BE PATIENT & POSITIVE: Remember that teachers are responsible for many children besides yours. While your concern or question may be incredibly important to you, try to allow reasonable time for the teacher to respond. Go into meetings or conversations with a positive attitude. Your disposition can be contagious and can make these exchanges more productive and pleasant for both you and the teacher.

It is important for the success of each child that parents and professionals work together on common goals. Successful IEP’s do just that. While the process might seem daunting at first, it is important to remember that there are many people who care about your child and want to support you. Seek out their experience and help, lean on parents with similar experience, and keep yourself focused on your priority – your child being learning successfully!