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!