Wednesday, October 6, 2010

Change of Plans...Meet Jack

            My real life began August 4, 2004.  Until then I thought I was living a life—writing papers, going to school, getting married, teaching students, grading papers; however, that life was missing my son and he was the catalyst for my paradigm shift.
            Once John Malcolm “Jack” was born, my world revolved around the number of dirty and wet diapers, ounces of formula, hours of sleep, and minutes of crying.  As Jack reached the stage of baby development where we began giving his age in months instead of hours or days or weeks, my husband, Joe, and I noticed a difference between Jack and other friends’ children.  Jack didn’t like many things.  He didn’t want to play with toys or even touch toys.  He kept his fists in tight little balls and seemed angry at the world.  Joe and I became experts at the range of silly faces and noises we could make to coerce our angry little boy to smile.  His personality was unique—one of a wizened old man—a scientist or philosopher in the making we decided.
            Comforted by our belief that Jack was just a thoughtful soul, I began teaching Jack to play.  I would read the What to Expect During the First Year as if it were my teacher’s manual.  If Jack’s objective was to display a pincher grasp, we would cram for that test until mastered.  The same routine was applied to all milestones: waving, babbling, pointing.  Then during the checkups, which I dreaded, I could answer, “Why yes, Jack has just started waving,” with complete honesty.  I did not share that he had been taught through drill, practice, and reward to wave.
            By the time Jack was 2, he was seeing three therapists a week: occupational, speech and physical.  Joe and I thought for a time that Jack only had delays and would eventually catch up to his friends.  The unspoken fear that seeped into our home during these years and hung like a fog was that Jack was autistic.  Joe and I had both seen Rain Man and we were terrified of that stereotype for our son.
            Jack’s savior and sister was born March 15, 2007.  Within two weeks of Ingrid’s arrival, I realized that Jack’s differences were significant and needed a name and that we needed help. 

To Tell or Not to Tell
            It took 4 months and 2 experts to help us understand that Jack has autism.  Unfortunately, they were not able to offer suggestions regarding therapists or next steps in the action process.  I think this is the most difficult time.  I know I felt absolutely alone.  Joe and I were too emotionally raw to share Jack’s diagnosis with anyone else.  I was afraid our friends and family would recoil, offer condolence, or display disgust.  I knew no one who had a child with autism.  I knew no therapists with any training regarding autism. 
            Six months later, I accidentally told one of Joe’s friends that Jack had been diagnosed with autism.  His reaction changed my whole opinion of telling others.  David explained that as a graduate student at Marshall College, he had worked with college students with autism.  David had a wealth of information about the variances of how autism presents in different people and the various paths people with autism can take. 
            Within a week, I’d written a letter to all my friends and family members and explained that our Jack had autism.  The support given during this time helped Joe and me immensely during our next challenging period: IEPs and home therapies.

The Only People Who Say “Fight!” Have Never Had a Special Needs Child
            It is easy to say, “Start a home program.  Do as much ABA (Applied Behavior Analysis) as possible.  Fight for your child.” 
            One that has gone through these steps would never be so callous as to tell another parent to just do these things.  ABA therapists are not in ready supply in Memphis.  There isn’t a listing in the phone book for these therapists, so parents have to pass on names from one family to another.  It is a time that is so frightening.  You have accepted the diagnosis, you know what your child needs, and you cannot find it.  And everyday that goes by is a lost day.
            Close to the time Jack was diagnosed, a group of parents created an Autism Society of the Mid-South.  We were lurking at every special needs meeting we could attend and heard about the newly formed group at one of these meetings.  The ASotM-S gave me the knowledge and tools to actually “fight” for Jack.  We met parents who would become friends, mentors, and the only ones who could laugh at the jokes only a parent of a child with autism would understand. 
Acceptance but not Defeat
            It has taken 2 years to find people to run Jack’s home program, speech therapists who feel comfortable working with a child who has severe autism, and a shadow for Jack whom I love dearly.
            Now we are coming to terms with the fact that Jack may never speak on his own.  That he may never live by himself.  Sometimes those realizations are difficult when I begin to think of what he might be doing had he not been given the added struggle of autism.  Would be play soccer or earn Cub Scout badges?  Get invited to sleepovers and want to play board games with his Dad?  Jack will probably not be that particular scientist or philosopher that we imagined he would become when he was a little baby. 
            However, he has already changed so many peoples’ lives.  Jack has made me a better teacher and a calmer parent (particularly since our daughter has a bone condition and has surgeries in Baltimore twice a year).  Joe is a better manager and looks at each event in life as an adventure.  Jack has altered the life plan of ABA therapists who have worked with him.  For instance, one is now a special education teacher instead of finishing up her last year in law school. Jack helps everyone around him question that big idea of ‘What is important’. 
            Jack is curious about light and shadow, water, textures, and sounds.  He loves plants and music.  And with that curiosity and love, our own little scientist blooms. 

What I Wish for the Future
            It is my hope that people will understand that children and adults with special needs are integral parts of our community.  I want Jack and his friends with special needs to have a place in the larger framework of our society. 

Sunday, August 22, 2010

Change of Plans...Meet Jace

First of all I would like to express how happy and honored I am to share our learning experience and story about our Jace to all of you.  I feel that I am an open book and the more that you know about Jace the better.  I can’t help but to get tickled, be proud and also sad when I hear Jace telling other children about his disability. That is the #1 thing parents feel with a special needs child…an array of emotions happening all at once!!

Overall I had a great pregnancy.  I had one incident where at a dr.’s visit I had high blood pressure and high protein in my urine.  I was put on bed rest for 1 week and after that week all was well again.  At 34 weeks I noticed Jace had not been moving.  My mom, dad and I went to the doctor and after an hour we welcomed Jace to the world.

After 1 week in the NICU the dr. came in and told us Jace had suffered from a stroke while in utero.  This is what caused Jace to stop moving.  The dr. told us Jace would be paralyzed on the right side of his body.  Everything at that point happened so fast we could not keep up with what has happened.  I will have to admit that during the pregnancy I was so wrapped up with the sex of the baby.  I wanted a girl and Nathan wanted a boy.  The thought had NEVER crossed my mind of praying to have a healthy baby.  At that point sitting in the hospital with a sick baby your mind is racing.  Nathan and I thought “ Where did we go wrong...What are we gonna do…What have we done!!”  Then I got angry.  I got so angry!!  I would see young girls coming in and out of the hospital having these healthy babies like it was nothing to it.  But now I am the one that is lucky.  We are the ones that are blessed!  A dear friend pointed out to me that if it wasn’t for Jace I would not have met her and all the wonderful, amazing people along the way.  She is right!  Nathan and I knew nothing about life before our Jace.

So at this point we got connected with the services we needed for Jace.  Jace started PT and OT services through TEIS (Tennessee Early Intervention Services) and TIPS (Tennessee Infant Parent Services).  We were on the right track.  We were accepting and adjusting to our new family.

When Jace was 2 years old he was battling with frequent ear infections.  Our pediatrician referred us to see an ENT.  Our ENT does a hearing screening on all her patients.  And on February 2004 another nightmare slapped us in the face.  Jace was diagnosed with auditory neuropathy.  Auditory neuropathy is a hearing loss where sound enters the ear but the signals that travel to the brain is distorted.  I was incomplete shock!  Jace never showed any sign that he could not hear.  He would respond to all environmental sounds.
This was huge!!  What else could go wrong with my baby?

Jace was fitted with hearing aids and use of an FM system soon after being diagnosed.  The FM system is his own personal microphone that helps magnifies the speaker talking to him over background noise.  Now after learning about hearing loss it could have been so easy to just throw the towel in and say that’s it.  But Nathan and I prayed and prayed and prayed.  And through that we had the strength to handle anything.  We have got this precious, sweet little wild child that depends on his parents to take care of him and his needs.  So we had to learn!!  We had to learn what all these letters and initials meant.  TEIS, TIPS, OT, PT SLP, IFSP and IEP.  That is so overwhelming!!  But now we know.  Our sweet little family has accomplished so much.

So now with the hearing loss and the stroke (cerebral palsy) we asked the professionals to guide us in the right direction we needed to be in.  Jace started toddler group at Vanderbilt then followed to Mama Lere Hearing School till he was 6 years old.  Now I am proud to say that my Jace is in 2nd grade in a mainstream classroom at Pegram Elementary school.  What an accomplishment!!  I am so thankful for every one that has been in his life and on this journey with us since he was born.  My advice to parents with a “special” child is to ask the professionals and /or other parents for guidance and support. It is a roller coaster of emotion and probably always will be but with the right support from family, friends and professionals we all come out strong.  My sweet, wild child Jace is as tough as they come and we adore and love him just how he is!  Thank you for taking time to read this and learn about our journey.  Take care!    

Tuesday, August 17, 2010

From One Parent to Another

I recently asked some parents to share with me the top 10 (or so) things they would say to parent who had a child recently diagnosed with a special need. I truly believe there is nothing better than sharing and talking with people who understand (no matter what you are going through) so I hope this blog serves as a way to connect people in some way.

Here is one family's TOP 10

  1. Take a deep breath and say to yourself….”it is going to be ok”.  It may not seem like it right now but it really IS going to be ok.

  1. You are your child’s number one advocate!

  1. Knowledge is power. Start asking questions, read, talk to professionals and learn everything that you can. It will help you feel more capable of making the decisions that lie ahead of you.

  1. Talk to other parents! There are lots of people out there who want to help you and who are willing to share their experience with you.

  1. Act quickly. Early intervention is the key to success regardless of the primary communication path you choose. Once you feel that you have adequate information about all your choices, don’t put it off….make a decision and move forward.

  1. Make a serious commitment to your decision and follow through. Making a decision about your child’s path is just the beginning. Now you have to do the work. Your child needs to develop good habits early on so make sure those hearing aids are on as often as possible. If they come off, put them back on. Go to therapy consistently. Do whatever you can to help make your decision a success for your child.

  1. Surround your family with a strong support system. Talk to your extended family and friends about your situation. Try to help them understand and ask for their support. Once again, other parents who are going through what you are going through are extremely supportive as are the professionals working with you and your family.

  1. Trust your instincts. If you feel strongly about something, let your voice be heard. You are the parent and you know your child best.

  1. Do not be intimidated by professionals. It can sometimes be overwhelming to be surrounded by a group of professionals and you may not have the confidence to say what you would like to say. You are a very important part of the process and what you have to say matters.

  1. Keep breathing. You are going to have very happy, successful days and you are going to have set backs and tough days. Just keep breathing and keep moving forward.
Hope this helps!  Any of you veteran parents feel free to leave some comments about what would be on your top 10 or shoot me an email at with a list.  

Wednesday, July 28, 2010

Back-to-School Time

It's officially that time of year.  Last week one of my patients who is starting her first year of pre-k came to therapy with her backpack that she has just picked out at Target that she just had to show me.  I remember how I use to LOVE back-to-school time when I was growing up.  To this day I love schools. I still work at some schools with contracts I have and I can't explain the way I love it...the kids, the books, the smells, the artwork on the walls.  Maybe it is nostalgia because I always loved school when I was growing up.

For a lot of you all there is some sadness for the loss of the laid back summer routine so I thought I would post some ideas for how to ease back into the school routine.  Feel free to share any ideas you have in the comments section.

- Move bedtime to an earlier time a few weeks before school starts if summer bedtimes have gotten later.

- Establish what your routines for homework, baths, video games/TV, bedtime will be.

- Arrange some outings or playdates with school mates to re-establish connections that may have been lost over the summer.

- Make sure to put a positive spin on going back to school and talk about all the fun things the child will learn and how they will see old friends and make new ones.

- If your child is going to a new school you may want to drive by there and take pictures of the building. You could even make a book about the experience of going to a new school.

All this back-to-school talk makes me want to buy a new box of crayons!

Hope this school year gets off to a great start and it is a year full of learning and laughter for you all.

Monday, July 26, 2010

I Have to Say it Was a Good Week

Last week was just one of those weeks that we all just live for.  It was really like every one of my patients did really good things in their sessions.  Everyone loves to see their hard work pay off...the kids, the parents, and I am no different.  As if I don't already have the best job in the world, a week like that comes along and just fills my cup.

I can't think of a better job that is more fit for me.  I am thankful everyday for waking up to a career that I am excited about and makes me eager for the day.  Plus I get to play Candyland and pop bubbles...who wouldn't love that???

Tuesday, July 20, 2010

Change of Plans...Meet Corbett

Corbett is 4 ½  years old. Corbett has been diagnosed with Autism, Tic Disorder, OCD and Anxiety disorder. He was first diagnosed with autism at 3, though he had services for developmental delays for 6 months prior to his diagnosis. All his other diagnoses came about 6 months after his autism diagnosis when we finally found a child psychiatrist who would see Corbett at such a young age.

Any one of those would have been plenty for any parent and child to deal with, but the combination of his disabilities has been overwhelming. It seems the course of therapy for any one of the disorders adversely affects another, so we walk a fine line with trial and error. Our insurance covers NO therapy for autism and sofar has refused to pay for treatment of the other.

Until recently, life used to be filled with doctor appointments. There was the allergist for his dust allergy and immunology problems, gastroenterologist for his GERD, the ENT for his constant ear infections and strep throat, the psychologist that diagnosed his autism, his psychiatrist and his pediatrician. That doesn’t even include the numerous therapists that used to visit Corbett before his state eligibilty for services ran out when he turned three. Some children see their pediatrician a couple of time s a year. We were seeing Corbett’s pediatrician a couple of times a month. When Corbett was 2 ½ , his ENT put tubes in his ears. In January of this year, his ENT took out his tonsils and adenoids. That has made a huge difference.
I cannot stress how important his doctors have been. I owe his pediatrician everything. She has been his biggest advocate and I cannot imagine where we would be right now without her. We have left so many doctor’s appointments in frustration in tears. Our first gatroenterologist was the worst. She said we were coddling Corbett, nevermind the fact that if he laid on his back he would choke, gag and vomit all night. Oh, I wanted to strangle her. Our pediatrician found us another doctor who understood that Corbett was unable to communicate and has compassion for his suffering. I wish I could say that was the only bad experience, but unfortunately it is not. It took us a long time to find the right doctors  for my son and some of that was luck. I will never again stand by  and let my son be treated badly or be demeaned as a parent. I have learned that lesson and it has made me stronger.

I wish people would teach their children to be nice to other children who may not seem “normal.” We try so hard to teach Corbett how to interact with other children and then we will see him try to play with the kids at the park or at Chik-fil-a and so often they will shun him. It breaks my heart every time. I have shed so many tears in public. Sometimes you just have to go to the grocery, even though your child is having an awful day and you have only had 4 hours of sleep and no shower and when someone shoots you the “bad parent of a rotten kid” look, it is too much. 

I wish I didn’t care what other people think, but I do. We have a system now. We only go to the grocery by our house, and during the slow hours. We only go to a couple of restaurants and either eat late or early to avoid the crowds. The mall is almost impossible. We only go to the park when it is not crowded.And there is ALWAYS a contingency plan. We always are ready to pack up and leave if we need to. We have left meals uneaten, full grocery carts and playdates right after we arrive. I dont mind putting up with Corbett’s outburst s and screaming, but I can only take so much social scrutiny before I  crack. I admire people like my sister-in-law (who also has an autistic son), who confront people who are rude to her.

I have learned so much about people these last few years. I have been moved to tears by a stranger’s kind words or actions. There are not words to let these people know how much their kindness impacts us. The man who let us skip line in the post office when everyone was staring as Corbett beat me about the head and screamed while I tried to send in important loan documents is my hero. Another time a stranger who put a hand on my shoulder and said, “Don’t give up” gave me strength when I needed it badly. I have realized that people who give me parenting advice are mostly trying to help, even if they  have no idea what they are talking about. I do wish people would stop telling me about Jenny McCarthy and how she “cured” her son, though.

I have learned much about myself these last few years also. I can go without sleep for ridiculous amounts of time. I no longer care about so many little things I used to care about. I will do anything for my children. I am terrible at arts and crafts. I don’t care if I ever have a career outside of parenting. I am doing the most important job I could ever do and it is fulfilling every day. I have learned to ask for and accept help and learned to cope without it. I have learned that my marriage can probably make it through anything.

We plan for our future so carefully and timidly. We have great hopes for our children and will do anything to help them realize their hopes and dreams.We are having a fundraiser in September to hopefully cover some of Corbett’s therapy expense.  You can find out more about Corbett's fundraiser by checking out Jones SLP services on Facebook.  

Wednesday, June 16, 2010

Leaving on a Jet Plane

One week from today I will be leaving for Orlando for the AG Bell convention.  I have been going to this convention for years now and it never disappoints.  It is 4 days long and every time I am mentally and physically exhausted.  Imagine sitting in a college course for 4 straight days where you are interested in every single thing that is being said.  I'm not complaining at all....just saying that it always shocks me how tired learning more about what you love can be.

I also have to tell that I get a little star struck with some of the famous professionals that will be there.  One year when the convention was in Anaheim, CA I actually met Will Ferrell, Christina Applegate, and Paul Rudd at a party in LA.  I talked to those movie stars no problem, but was nervous to talk to "famous" speech-pathologists that most of you all wouldn't know if they sat down on your couch right now.  Weird...I know.

Here is a link to AG Bell's website.  There is a wealth of information on their site and they offer scholarships to families to help offset the costs incurred by families of children with hearing loss.

If you or your child has a hearing loss I strongly encourage you to become a member of AG Bell. You can try out the membership for free for 6 months.

I just LOVE pictures of implants and hearing aids on kids.  Probably another weird thing about me to most, but I just do!

Wednesday, June 2, 2010

The Tube

I get asked lots of questions about children watching TV in my practice.  I have to say that the children that I have worked with over the years who had the best attention spans, imaginations, and play skills were children that I knew watched little or no TV in their early years.

Here is the American Academy of Pediatrics statement about TV for children under 2.

"Pediatricians should urge parents to avoid television viewing for children under the age of 2 years. Although certain television programs may be promoted to this age group, research on early brain development shows that babies and toddlers have a critical need for direct interactions with parents and other significant caregivers (eg, child care providers) for healthy brain growth and the development of appropriate social, emotional, and cognitive skills. Therefore, exposing such young children to television programs should be discouraged."

I am not trying to preach.  Any of you that know me know I am pretty much an "everything in moderation" person...unless you are talking about shoes...

But I do think there is something to be said for kids that watch the same movies and play the same video games every day.  How do we expect these kids to play imaginatively when their lives are programmed?  Of course they fall apart when their scheduled is changed.  They are used to pressing A and B happening.  

Here is another site I found about recommendations for older kids.

I would love to hear any ideas from you all for ways to incorporate TV in a healthy way into your home.  

Friday, May 28, 2010

How to Be a Playful Parent

Play is a child's "work" and is a very important part of a child's life.  It is the way he will discover the world around him.  The best kind of play is fun and engages the child.  Here are some how to's on how to be a playful parent...

1.  Know that any playtime with your child is invaluable.
2.  Make your own creative and use your imagination.  Kids are great at this...adults are the ones that need practice.
3.  Become a child yourself.  Turn a hairbrush into a microphone, a bowl into a hat.
4.  Give it your attention.  When you are playing give your child your FULL attention so that he can develop confidence in what he is doing.
5.  Follow the leader...let your child guide.

Who knows you might even have some fun???

I play and laugh all day long with kids.  They are experts in play and have taught me so much.  Even if it is just for a few minutes, take time every day to really play with your kids.

Tuesday, May 11, 2010

Oh Baby!

Within their first year babies will make one of the greatest accomplishments of their lives...they will learn to communicate.  They will learn to take control of their mouths and begin forming the sounds of their language.  They will learn to communicate their needs in ways that become more predictable to those around them often.

Babies begin learning before they are even born and within a few years they will learn the many different reasons why humans comment, request, reject, and so on.  They will also learn the social rules that apply to language such as eye contact, turn taking, and maintaining a topic.

Here are some things you baby should be doing from birth to 3 months:

Startling to loud sounds
Quiets or smiles when spoken to
Seems to recognize your voice and quiets if crying
Increases and decreases sucking behavior in response to sound
Makes pleasure sounds (cooing, gurgling)
Cries differently for different needs
Smiles when sees you

I don't know this baby, but he/she is precious!  

Sunday, May 2, 2010

Celebrate Better Hearing and Speech Month

May is Better Hearing and Speech Month.  Here are some practical tips any parent can use to encourage better understanding and use of language.  Try some of these out and while you are out celebrating BSHM why don't you give a big hug to all the hearing and speech professionals out there??? 

•Model grammatically correct language in your home
•Explain words that are new for your child
•Describe your activities as you are doing them
•Turn off the television
•Read books with your children
•Talk with your child even if they cannot respond
•Give your child time to formulate his answers to your questions
•Accept signs and gestures as well as vocalizations for minimally verbal communicators. This will make your child less frustrated
•Expand on what your child says to increase expressive language
•Play games to practice concepts like taking turns, following rules and attending to a task
•Support your child to help complete homework assignments
•Build your child’s esteem by providing positive reinforcement • Play games that help your child categorize
•Involve your child in cooking or baking activities. Talk out-loud about each of the steps

Thursday, April 8, 2010

April is Autism Awareness Month

In honor of Autism Awareness month here are some facts and statistics on autism: 

  • 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.
  • Prevalence is estimated at 1 in 110 births.
  • 1 to 1.5 million Americans live with an autism spectrum disorder.
  • Fastest-growing developmental disability; 1,148% growth rate.
  • 10 - 17 % annual growth.
  • $60 billion annual cost.
  • 60% of costs are in adult services.
  • Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.
  • In 10 years, the annual cost will be $200-400 billion.
  • 1 percent of the adult population of the United Kingdom have an autism spectrum disorder.
  • The cost of autism over the lifespan is 3.2 million dollars per person.  
You may read this today and not know anyone who is affected by autism, but chances are with its prevalence growing you will someday.  Every time you roll your eyes at someone who has a child who is out of control at the supermarket take and minute and stop to think that maybe that child has autism and the parents are doing everything they can to cope and deal...and get groceries.  

Wednesday, March 24, 2010

From the mouths of SLPs

Don't know where I got this idea, but I thought it would be good to post things that therapists would say to parents if they could say it in complete anonymity.  I have to say that the older I get and the longer I do this there is not much that I hold back from families, but I can remember thinking back when I first started working "I can't tell them that. I don't have any children of my own and they will think I am judging them".

In my graduate work and career I have met some of the most genuine and hard-working SLPs.  People who lose sleep over their patients and dedicate their lives to helping others.  I thought why not ask some of these fantastic folks..."what do you find yourself saying over and over to families...whether out loud or in your head"?  Here are some of their answers:

- No matter how much your child loves the toys we play with in therapy that does not mean you should go out and buy every one of them.

- Don't be afraid to ask questions or interrupt something you don't understand.

- Be silly!

- You don't deserve to be judged by anyone that works with your kid.  If you feel it is not a good fit, then say something.

Have realistic expectations of your child and their disorder and the time frame in which progress will occur. this means understanding typical development and your child's disorder.

- Read books daily

- Talk, Talk, Break, Talk

- Play.. (I mean sit on the floor and do nothing else) play with your kid.

- Consistency is key.

- I may not have all the answers, but we can work together to find them.

- Please PLEASE take that pacy away from your child.  

So there you have it.  And just because I think I need to add some more pictures to my post...Here is a picture of me with some of my fav SLPs.  

Thursday, March 18, 2010

So...What's the Difference?

For all you faithful readers out there (little chuckle), sorry I have been so bad about posting.  I have been so busy and out of town.  I have been networking like crazy.  I joke that it is probably a bit like Chinese Water Torture for all the people in the networking groups to hear me over and over again "My name is Ginger Jones and I am a speech-language pathologist and I am the owner of Jones Speech-Language Pathology Services".

As I have said before most people don't even know what a speech-language pathologist is so I thought I would post a helpful explanation about the difference between speech and language.

Check out this link from the American Speech-Language and Hearing Association.

ASHA has great resources for professionals as well as the general public.  Check them out on the web.  You can find a link under my helpful links at the top of the page.

Wednesday, February 17, 2010

Look How Far We've Come Baby

So over the weekend I had to opportunity to speak to a group of adults with hearing loss.  Initially when I was asked to speak I thought "what in the world am I going to talk about???".  But after some thinking and reminiscing about talks with my grandparents about raising children with hearing loss I came up with a topic.  I called it Aural Habilitation...These Days.  

I started off my talk with  my story about running into a cashier at Target who wore hearing aids.  When I told the cashier I was an SLP she told me how much she hated going to therapy when she was growing up.  Of course I was a little saddened to think...will my patients say that one day???  I try my best every day to be creative with ways to make my therapy seem like play.  Mostly because we know that a child's work is play, but also because I would much rather play grocery store than do a worksheet.

I went on to tell about how parent involvement is the center of my practice and how each session is focused on training the parents of how to work with their children at home.  I showed a video of a typical therapy session with a 2 and 1/2 year old with hearing loss.  I could just see it in their eyes how amazed they were at therapy these days.  A couple of them even raised their hands to tell me about how speech when they were growing up was just imitating the words of their clinicians.  Ummm no...Miss Ginger don't play that game.

I really can't take any credit for how the tides have changed.  There have been so many great researchers and therapists before me who have paved the way for making learning to communicate functional AND fun.  I am so grateful to do what I do this day and age and for the gift of learning from history.

Here are some pics of the day...

You can see my sweet mama in the third one in the pink sweater.  Isn't she beautiful?

Thanks to the Nashville Chapter of the Hearing Loss Association of America for allowing me to be a part of their meeting.

Friday, February 12, 2010

I'm So In

Personal post today....just because.  If you held a gun to my head and asked me to tell you any of my close girlfriends' phone numbers I couldn't do it, but if you happen to ask for the 1-800 provider numbers for Blue Cross Blue Shield of Tennessee and United Healthcare I could tell you.  So is my life lately...

I knew when I left my former (very valued) job that I was trading one set of challenges for another, but I don't think I knew just HOW challenging dealing with insurance companies would be.  So today I type as an in-network provider with Blue Cross Blue Shield.  Unsure of what the next 180 days of this contract will bring, but I am 100% confident in my ability to roll with the punches and learn from it.

A negotiated very small step for HUGE step for me.

Thursday, February 4, 2010

You Gotta Fight...For Your Right(s)

You don't have to fight for these rights...I just wanted to write a post about parents' rights and I couldn't think of a catchy title.  Thanks, Beastie Boys!  

I am not talking about legal rights.  That is a whole 'nother post that would take days.  I'll get to that, but for today here is a list of rights you have as a parent of a child with special needs.

You have the right:

- to feel angry
- to seek another opinion
- to privacy
- to keep trying
- to set limits
- to just be a parent
- to be unenthusiastic
- to time off
- to be the expert in charge
- to dignity
- to hear the truth

You don't have to be a super-parent, you don't have to live your child's special needs every minute of every day.  I bet that you are better at doing all the things you've been told you need to do than you could imagine.  It just doesn't seem as effortful when it is a habit.  

Tuesday, January 26, 2010

I'm All Ears

So how do we know if a child is hearing sound?  I'd like to think I am pretty good at it since I do it all the time, but every once in a while I will be wondering this little one hearing this?  I have really found that some babies and toddlers are awesome at letting us know that they are aware of sounds in their environment.  There are some that are not...the sneaky ones that keep us on our toes!  No matter what I always feel more comfortable saying a definitive yes or no when I really know a baby.  So that's where you come in parents...make yourself comfortable with looking for those true responses versus one that may be chance.

As soon as birth infants give predictable responses to sounds that occur above their hearing thresholds.  Children with hearing loss are no different.  Here are some responses you may see:

Cessation of vocalization/behavior
Eye or head turns
Looking at or for the sound source
Pointing to ear
Reciprocity in babbling (like back and forth with an adult)
Imitation of sounds
Pointing to ear

Is your baby hearing?

Friday, January 22, 2010

Read it and Don't Weep

For those of you that know me, you know I don't read much...unless you count reading Us Weekly during a pedicure as reading.  I have recently signed up for a book club with some girls and I am so excited. Just from the emails going back and forth I can tell these are going to be some fun girlies.  I am also excited because this will force me to read things that don't have to do with work.

I guess since I have always loved what I do it didn't matter to me to curl up in bed with a great book about cochlear implants.  Pathetic to most...I know.

SO in honor of my soon to be (fingers crossed) hobby I thought I would post about one of my favorite work related books.

The Read-Aloud Handbook by Jim Trelease.  This is a must read for any parent...not just parents of children with special needs.  I bought mine on for like 10 cents before shipping.  I would've paid MUCH more because it is that good.  It is a must-have for anyone in education or speech as well.

I could go on and on.  I can't even pick which great things to tell I learned because there are so many.  Just take my advice and check it out. You won't be sorry.

Wednesday, January 20, 2010

What's Your Function?

When dealing with babies and toddlers learning first words or children with limited language and vocabulary you MUST think about functionality.  What are the words/phrases that are the most functional in this child's world?  Is is "penguin" or is it "help"?

Not to say you can't talk about penguins, but to be truthful if your child is not able to communicate basic communicative functions such as requesting more, rejecting,  and indicating termination then the least of my concerns is that he/she learns penguin.

Make sure you (and your therapist, if applicable) are also working on a variety of words from different semantic categories.  By that I mean not only nouns, not only verbs.  Children will usually start combining words when they have 50 words, but they need to have a variety of different types of words in order to do so.

Ok...I'm off my soap box...for now

Monday, January 18, 2010

Help Me Help You

There was a study conducted in Finland that found that parents who "coped best" with their child's disability considered their own needs as well as those of their children.  I am sure that most parents tend to consider themselves last or not at all.

Here are some caregiver survival tips:

1.  Plan ahead
2.  Learn about available resources
3.  Take one day at a time
4.  Develop contingency plans
5.  Accept Help
6.  Make YOUR health a priority
7.  Get enough rest and eat properly
8.  Make time for leisure
9.  Be good to yourself
10.Share your feelings with others

Easier said than done, I know, but think about the airplane emergency instructions...Parents place your oxygen mask on your face before you place one on your child.  Being able to breathe allows you to think logically instead of just reacting.

Thursday, January 14, 2010

Favorite Quotes Lately...

Sometimes my kids say the cutest things.  Some are so funny and sweet I just can't stand to correct them.  I just love the way that their brains take the language they have to make their point.  Here are some that made me laugh out loud lately.

One of my kids said her sister went to a house "up in the sky" turns out she meant up on a hill to her friend's house.

I have been working on pronouns she/he, her/him with one of my little ones and yesterday we were having a healthy snack of vegetables and tea party with a boy and girl baby to work on this.  She says to the girl baby "Her, do you want cauliflower?"  I just died laughing!  That's what we "in the biz" call "overgeneralization".  Now I just hope she doesn't go to school today and start addressing her friends and teachers as "her".  

One of favorites from the past is when I asked one of my kids about her dog, Sugar.  Little did I know that Sugar had recently passed away (I have this problem of asking kids about pets right after they have passed away...I am not kidding it has happened to me about 4 times) and she said "Sugar go up" with a sad face and pointed to heaven.  Doesn't that just melt your heart?

Just some that are too sweet not to mention.  

Monday, January 11, 2010

The Gift of Gab

Ok Ladies...for any of you who have been accused of being chatty...this one if for you.

In a study that compared the effect of parental chattiness on children's vocabulary this is what was found:

At age 16 months the children of "non-talkative moms" had approximately 25 words while children of "talkative moms" had approximately 50 words.

At 24 months the children of "non-talkative moms" had approximately 200 words while children of "talkative moms" had approximately 500.

So go ahead and chat it up.  It is better for the kids!

Source:  Laliberte, Richard, "Parents Report," Parents Magazine, Vol.72, No. (September 1997), page 50

Friday, January 8, 2010

Alphabet Soup

I often get cracks from my friends on all the letters behind my name in my email signature.  Most times I don't even explain - just respond with some comment about how important and smart I am and how lucky they are to know me!

M.A., CCC-SLP, LSLS Cert AVT (alphabet soup, right?)

When I tell people that I work with children and adults who are deaf/hard of hearing most of the time the next question is "oh so you know sign language?". I do, but I have lots of kids who listen and speak. When I say that most people seem baffled.  Some people I meet don't know what a speech-language pathologist is, much less a specialty certification one can hold such as a Certified Auditory Verbal Therapist.  So here's a post about what AV Therapy is. 

(If I have learned anything in my years of working with children with hearing loss it is that I must preface this post with this....I do not believe that one communication mode or educational methodology works for every child with hearing loss.  I think that communication mode should be greatly researched by a family by gaining information from multiple sources before a choice is made.  I believe in the families' right to be given unbiased information and the right to choose the mode of communication they will pursue.  If you take a look at my caseload you will see children who are speaking and listening, children using total communication, children using PECS, and children who use American Sign Language.) 

The Principles of Auditory Verbal Practice are:

-To detect hearing impairment as early as possible though screening programs, ideally in the newborn nursery and throughout childhood
-To pursue prompt and vigorous medical and audiological management including selection, modification, and maintenance of appropriate hearing aids, cochlear implants, and/or other sensory aids
-To guide, counsel, and support parents and caregivers as the primary models for spoken language through listening and to help them understand the impact of deafness and impaired hearing on the whole family
-To help children integrate listening into their development of communication and social skills
-To support children's auditory-verbal development through one-to-one teaching
-To help children to monitor their own voices and the voices of others in order to enhance the intelligibility of their spoken language
-To use developmental patterns of listening, language, speech, and cognition to stimulate natural communication
-To continually address and evaluate children's development in the above areas and, through diagnostic intervention, modify the program when needed. 
-To provide support services to facilitate children's educational and social inclusion in regular education classrooms

To find out more or locate a Cert AVT in your area visit

Thursday, January 7, 2010

Invaluable Resource

Today I met up with a former colleague who is an audiologist and bilateral cochlear implant user.  Besides the fact that I hold her in high regard for being a fabulous audiologist and friend...I cannot put into words how much I appreciate knowing her and having her tell me about her experiences with her implants.  

No matter how much I know (or think I know) or could ever dream to learn about cochlear implants, I don't know what it is like to have one.  I often think about these babies and toddlers and how we are doing the best we can with knowledge we have now.  But what is it REALLY like for them when I ask them to take their preferred implant off (if they have one) and listen?  What is it REALLY like to go from those hearing aids you were hearing with to these implants?  Did I leave the preferred ear off too long?  Is this an auditory memory issue or a discrimination issue? I could go on and on.

Bottom line...knowing someone with an implant(s) is invaluable if you work with these patients or if you have a child with a CI.  Get online and find people.  People like Ally (my friend) or my parents are always so willing to talk about their experience good and/or bad.  One of the great things about the internet is that it has made the world very small.  So other people "worlds" away can now be contacted via Skype, Facebook, and web forums.  It is truly invaluable...

Cochlear Implant Surgery....$70,000
Weekly Speech Therapy Session...$80-150.
Knowing an adult with a cochlear implant who can give you advice and some piece of mind...priceless

Wednesday, January 6, 2010

Welcome to Holland

I had a conversation with the mom of a former patient the other day.  After many years of evaluations, therapies, special schools, surgeries, audiology appointments, and IFSP/IEP meetings she said their life seems more "normal" now that her children are mainstreamed and function with minimal support.  Talking with her really got me thinking about what changes in our field and early identification/intervention will have on how "normal" families will feel when they are faced with raising a child(ren) with special needs.  

I can't remember the first time I read this passage, but it is one of my favorites.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

By Emily Perl Kingsley

One part that always strikes me is  And you will meet a whole new group of people you would never have met.  It brings to light that as a speech-language pathologist I am following my plan.  I chose a major, read the books, passed the classes, graduated, went on to graduate school, read the books again, passed the classes, interviewed for jobs, then graduated.  Having these people in my life was all part of my perfectly orchestrated plan.  So the realization that for these families...having SLPs, OTs, PTs, Audiologists, Special Ed Teachers, Psychologists, etc., no matter how much they love and appreciate these professionals, was NEVER part of their plan or the dreams they had for their child.  

Tuesday, January 5, 2010

Is That a Fact?

Hearing loss is the number one birth defect in America.  I have probably quoted this hundreds of times and always hated saying "birth defect".  I don't know why... it just sounds so harsh.  I guess it may be that I love my kiddos*** just as they are and really can't imagine them any other way. 

*** I have a habit of calling my patients "my kids" and the parents of children I work with "my parents" so it happens on occasion that I am telling a story about "one of my kids" or "one of my parents" and people think I am talking about my actual family. I should come up with some clever way to differentiate between the two, but until then you will either have to ask or use context clues.  As for now I don't have any children of my own so that one is easy.  I do refer to my actual mom and dad frequently when talking about hearing loss because they are deaf and have cochlear implants.  So that may get confusing, but hopefully you will be able to tell the difference. 

Every time I speak about facts on hearing loss I can tell people are shocked.  Sometimes I am as well.  Here's some more facts...just in case you were wondering.

- 1 in 1,000 newborns (that's 33 every day) is diagnosed with some type of hearing loss.
- When children are not identified and do not receive early intervention services, special education for a child with hearing loss cost an additional $420,000, and has an estimated lifetime cost of $1million per individual. 
- 90% of children with hearing loss are born to parents with normal hearing
- Research indicates that children with unilateral hearing loss (single sided) are 10 times as likely to be held back a grade compared to their peers with normal hearing.
- Research also indicates that children with mild hearing loss may miss 25-50% of speech in the classroom environment and may be labeled as having attention or behavior problems. 
- Approximately 25,000 people in the United States and 70,000 people world wide have cochlear implants.
- Nearly half of all cochlear implant recipients are children.

And those are (some of) the facts!

Monday, January 4, 2010

What's in a Name?

I figure that people may ask why I named my blog what I why not take this opportunity on my first post to explain it?

I have spent so much time scrutinizing every idea for a blog name that I had.  So many that I thought of were unavailable for me to use.  This forced me to really think about why I wanted a blog and what the purpose would be.  I feel very blessed to do what I do for a living and I am so grateful for all of the knowledge I have gained in my experience and I love sharing what I know (ask my husband or my girlfriends and I'm sure they will tell you how much I talk about it).  So...I got to thinking...people hire personal chefs, personal trainers, personal housekeepers, personal decorators because they are experts. Why not have a personal speech-language pathologist as well?  Obviously I will not be "hired" by everyone that reads the blog, but the point is to share what I know, what I do, lessons I have learned/am still learning with others.

So there you have it (in case you were wondering).