Hearing Test

When Maya was diagnosed with Apraxia, we were advised to take her to an ENT and make sure her hearing and ears were checked.  We had Maya’s hearing and ears checked and everything checked out fine.  Recently we had CJ’s hearing tested.  I knew he would pass the hearing test, but it is important to have this test completed and to collect the documentation.

When we meet a new doctor or therapist, they tend to ask two questions, “Does your child suffer from ear infections and did they pass their newborn hearing tests?”  My children rarely suffer from ear infections.  As infants, they each had only one ear infection and the infections were minor.  Also, both kids passed their newborn hearing tests.  However, rechecking their hearing has helped in many ways.

Collecting the appropriate documentation from an ENT helps add to our support system. I can take this documentation to a new doctor or therapist office, present it, and add it to my children’s files.  It helps eliminate many questions the new doctor or therapist may have about my children.

I have also found that schools will ask if the child’s hearing has been tested.  Again, it was nice to share this piece of information with school staff, reassuring them that my children’s speech difficulties are not related to hearing or ear health.

 

 

 

CJ Update

Our little boy has been working very hard at his speech therapy sessions.  He has been receiving speech therapy twice a week from two different therapist.  A private speech therapist and an Early Intervention therapist.  Both of CJ’s therapist notice continued growth in his speech and language development.

CJ works super hard at trying to communicate with us.  His apraxia is not as severe as Maya’s so we have an easier time understanding him when he is trying to communicate.  However, outside our home, we translate CJ’s speech for others.  I define CJ’s stage of speech development as the “My Mommy is my Translator” stage (See Below).

Side note: Having two kids with Childhood Apraxia of Speech has made me interpret the condition in my own way.  Disclaimer: I am not an expert, just a mom who is coping with the challenges of a rare neurological speech disorder.  To help me cope, I’ve come up with my own stages of CAS.

1. Nonverbal: limited communication, challenging for everyone to understand, including mommy and daddy
2. Verbal: Mommy/ Daddy translator stage
3. Verbal: Let’s build your confidence so you can speak on your own stage
4. Verbal: You can say your name and you don’t need so much help from your mommy and daddy = confident happy kid!
   • I’d say Maya is in-between stages 3 and 4 and CJ is in stage 2, but there are times we still have difficulty understanding him.  

Today, I was able to capture two videos of CJ attempting to communicate his wants and needs to me.  You will notice in the videos he is working very hard for me to understand what he is trying to say.  In the first video, CJ wants to eat his cereal out of a particular bowl.  Through process of elimination I was finally able to figure out what he was saying.  This happens frequently throughout our day. (Scroll below first video for the second video.)

 

Ironically, after capturing the first video, there was another moment where I had difficulty understanding CJ’s speech.  In this video, CJ is requesting something.  I could not figure out what he wanted.  Maya helped me interpret what he was saying.

Update

As another Apraxia Awareness Day approaches, I thought it was only necessary to update you on the kids progress.  In this post, I’m going to update you on Maya’s progress.

Both kids continue to work hard at therapy.  Maya has entered the world of occupational therapy.  Once a week she takes aquatic therapy to help her overcome some anxieties she has been experiencing.  Over the past few months, Maya has been having “meltdowns,” not temper tantrums, but full blown meltdowns.  The meltdowns are rare, but when they do happen, the meltdowns tend to hinder her day.  She has trouble calming herself down.  Through occupational therapy, I’ve learned techniques to help calm Maya and get her back to her usual self.

The meltdowns tend to occur when she is overstimulated, and I have noticed a correlation between too much time on the iPad and not enough activity.  (Maya doesn’t know this, but mommy has hidden the iPad.)  She also has meltdowns when she is very anxious.  If she is unsure of something or unsure of her ability to do something, Maya becomes very anxious.  Maya’s OT has given me some coping mechanisms to help her overcome her anxieties and thankfully, the techniques are working.

Maya’s speech has significantly improved.  She still has trouble with some words and talking in complete sentences.  She tends to mix up her/she he/him and she will omit words from her sentences (is, are). One of her favorite sentences is, “I not know.”

Even though she still has errors in her language, I feel confident that she will love kindergarten.  She loves making friends, playing sports and going to school.  She loves art and visiting family.  She loves to learn and write letters to her friends.  She truly does not let her limitations define her.  She works through her challenges and she loves to play and have fun.

Here is a recent picture of Maya.  She was super excited to be the line leader at school!

 

 

Here is a video of Maya playing soccer! She comes alive when playing sports.  She absolutely loves to play any sport. (Maya is wearing blue socks, yellow shirt, and has a long pony tail.)

CJ age 2 years 5 months

CJ has been receiving speech therapy from the age of 20 months.  He receives therapy from Early Intervention and from a private practice.  Since his birth, I was hopeful that he did not have Childhood Apraxia of Speech.  He did not have any problems nursing and he quickly moved from baby food to real food.  He babbled, he made a ton of facial expressions, he smiled with ease.  He was different from his sister.  However, around 18 months, I noticed his expressive language was poor compared to his peers.

Here is a video of CJ around 9 months old.  In this video he babbled and expressed his thoughts.

 

As CJ grew from the infant to toddler stage, his baby babble did not significantly change from babble to words.  He did have a few words, mama, dada, up, eat, more.  However, when he pronounced these words, they were not clear.

CJ is now 2 years 5 months old.  He is saying a lot of words, but yet the words are still not clear and audible to others.  At this stage in his language development, we are experiencing many of the same circumstances experienced with Maya.  He has periods of frustration when we do not understand what he is saying.  When communicating with others outside of our home, I am his speech interpreter.

At home we continue to practice improving his speech.  He likes to play games and talk to us.  He continues to surprise us with the things he comes up with.

Here is a current video of him playing a game with me.

Learning as I go…

“It’s a funny thing, how much time we spend planning our lives. We so convince ourselves of what we want to do, that sometimes we don’t see what we’re meant to do.”
― Susan Gregg Gilmore, Looking for Salvation at the Dairy Queen

I had plans for my career and I still have plans, but my currently my priority is making sure my 2 kids receive the support, care and therapy they need. I do my best to educate myself about their condition, Childhood Apraxia of Speech.  I read books, blogs, visit CASANA’s website, attend workshops, follow others with Apraxia on Facebook.  At this time in my life, this is what I was meant to do.

So I’d like to share with you some tricks and helpful hints, I’ve learned on this journey with Childhood Apraxia of Speech.

First, become an advocate for your child’s condition.  It is important to educate others about the condition, so this means educating yourself.  I would suggest visiting CASANA’s website. http://www.apraxia-kids.org   This website is an excellent resource and I use it to help me answer many of the questions I and others have about Childhood Apraxia of Speech.

Facebook has been an excellent resource. I follow these pages, Mikey’s Wish – Verbal Dyspraxia Awareness, SLP mommy of Apraxia/Dyspraxia, Childhood Apraxia of Speech Association of North America (CASANA), APRAXIA-KIDS-Every Child deserves a voice group and my local Apraxia-Kids Pennsylvania Group.  These pages have become an excellent resource for support and education about Apraxia.  I am able to connect with other parents and share our stories.  Facebook is also a great way to share information about Apraxia.  I use Facebook as a communication tool to update family and friends on my kids’ progress.  Facebook provides me an excellent outlet and links me to a community.

Books are also an excellent resource.  These are two books I have enjoyed reading:

In our home I do my best to organize our speech resources.  I save homework lessons, word cards and other items our therapists provided for at home practice.  I have intended to keep notebooks for each child to document their therapy sessions and what they have learned and worked on, however, my iPhone is an excellent source for note taking.  Most importantly, I have made each child a binder.  In these binders I keep all of important papers we have received on our journey.  Paperwork from Early Intervention, IEPs, summaries of therapy sessions, diagnosis papers, calendars, and any other paperwork I feel is important to save.

I have returned to these binders a number of times.  I pull paperwork when I have progress meetings.  This paperwork is also extremely important when I work with our school district.

Collection of paperwork since Maya began therapy

 

Update on the Kids

Our household is very busy.  With two kids in speech therapy, we spend a lot of time going to different appointments.   I am extremely grateful we can provide so much care, support and therapy for our children.  This crazy busy life works for us and most importantly it works for our kids.

Currently, CJ receives therapy twice a week.  He receives therapy from a private speech therapist and he receives speech therapy within our home through an Early Intervention speech therapist. Both of these therapist have worked with Maya and they are very knowledgable in the treatment of Childhood Apraxia of Speech.  More importantly, I have wonderful relationships with CJ’s therapist.  They provide Kevin and I with homework and tools to use in our home to help further CJ’s speech.  In a short period of time, CJ’s language has grown.  He makes many verbal attempts to express his wants and needs.  This growth would not have been possible without his two speech therapist.

(We intend on increasing CJ’s weekly speech therapy sessions when he turns 3.)

 

 

Currently, we take a more aggressive approach to Maya’s therapy sessions. At the age of 3.5, we decided to increase Maya’s weekly therapy sessions. Fundraising and insurance has played a significant role in helping us increase her therapy sessions. During the week, Maya will receive 4 speech therapy sessions and 1 occupational therapy session. (She has therapy with 2 private therapist, 1 private OT, and a therapist provided through our school district). Overloading Maya with therapy sessions has significantly helped improve her expressive language.  Like her brother, we also incorporate practice sessions at home.

Here is a video of Maya and me practicing the “K” sound in the final position of a word.

(You will see I provide Maya with small toys or play-doh to play with during our practice sessions.  She has a difficult time focusing and toys help by keeping her seated during our practice session.)

 

 

 

Comparing

Maya will begin her last year of preschool in a few weeks.  We have one year to get her ready for Kindergarten.  During this time of the year, I have continuous questions running through my mind…

• “Will Maya be ready for Kindergarten?”
• “Can I do more to prepare her?”
• “How is she going to react to this school year’s schedule change?”
• “How much progression will she have over the school year, both in speech and academics?”

When I become lost in my thoughts, I have to remind myself of how far Maya’s speech has grown over the last few years.  Her growth becomes apparent when I look back on videos from previous years.

I recently found this video of Maya at age 3.  The video was taken March 2015.  We are in the car and holding a conversation with Maya.  She is telling us about visiting somewhere with a cat and she was scared of the cat.

 

The second video was taken today, August 17, 2016.  Maya will turn five on September 14, 2016.  We are sitting at our kitchen table working on some school work and playing with beads. Please take the time to watch the video and compare the previous video to these two videos.

 

 

Mr. Calvin

I’ll come right out and say it, CJ was diagnosed with “Suspected Childhood Apraxia of Speech.” (The term “suspected” is used because CJ is under 2 years old. He is almost 22 months.)

As CJ’s mommy I use the term “suspected” very loosely.  A mother knows her child. Watching CJ attempting to communicate is like watching Maya all over again.  He struggles to communicate his thoughts into words.  He has very limited vocabulary. The words he does say are not spoken clearly and are missing syllables. He cleverly has developed his own “CJ Language.” I know he will has a speech condition.

I’m not sure why both of my kids have issues with speech.  All I know is, Kevin and I need to keep moving forward, ensuring both kids receive the love and care they need.

Fortunately for CJ, he has access to phenomenal speech therapists. We are utilizing Maya’s therapists for his treatment.  Maya has a wonderful team of therapists that support and love her.  She has had such tremendous growth over the past year because of her therapists.  When we noticed CJ’s speech was not progressing, we made arrangements to have his speech evaluated.  He has now started speech therapy with two excellent SLPs.

A couple of times a week, CJ attends speech therapy.  He recently began to receive services from Early Intervention and he visits a private speech therapist.  Even though he is young, he has already began to show interests in his therapy sessions.  I am anxious to see how quickly his language development progresses over time.

I’m going to share a video of CJ at 18 months old.  In the video you will notice minimal mimicking of language.

 

 

 

 

Teaching

Note to self: You can plan for the future, but the Dear Lord may have something else in mind. Keep faith and stay strong.

I remind myself of this several times a day, typically during those times when I allow my thoughts to get the best of me. 

Before CAS entered our lives I had plans. To many they may not seem exciting, but to me, my plans were special.  In 2008, (after I had already earned a 4 year degree) I finally figured out what I wanted to do with my life. I wanted to be a school teacher and by the fall semester of 2008 I was (again) a full time college student. 

Returning to school was one of the best decisions I ever made and I was (and still am) determined to have the career I’ve always dreamed about. However, I find myself in a life I never imagined. 

It isn’t a bad life at all, just one I’ve never imagined. “Stay at Home Mom” was a job title I never looked for, but one I absolutely love. Like many moms, I wear many hats. Chauffeur, cook, house cleaner, but most importantly I’m the mom of two beautiful children. 

On days when I allow my thoughts to wander and think of the many plans I had for myself, I remember I have a very important job. In my home I am a teacher. My plans have changed and I am currently not teaching in a classroom, but I teach all day long. I create lessons for my daughter. We work together to overcome the challenges she faces with CAS. I teach her techniques to communicate. Everyday we work together, learn from each other.

Yes, my plans have changed and it is my hope to one day teach in a classroom. For now, I have one important lesson to teach, I have to teach my daughter to talk. I have to teach her to find her voice. 

What is Childhood Apraxia of Speech?

Before our daughter was diagnosed with Childhood Apraxia of Speech, I used to tell people that she had a speech delay.  She wasn’t talking and at the time I didn’t know why.  Once we received her diagnosis I could now give people a name, “She has Childhood Apraxia of Speech.”  Response questions; “What’s that? Will she ever talk? I’ve never heard of it, will she grow out of it?”

Over time, I have tried my best to give textbook answers to the many questions.  I try my best to explain to people why it is difficult to understand our daughter’s speech.  Truthfully, each time I have to explain our daughter’s condition to people I wish I could say these things…

“What is Childhood Apraxia of Speech?”

It’s a condition that our daughter has and it is a condition that affects our daily lives.  Sadly, there are times when we cannot understand what our daughter is saying and we all become frustrated.

“What is Childhood Apraxia of Speech?”

As a family we work together to overcome this condition.  Everyday, we work on improving our daughter’s language.  Whether it is in conversation, singing songs, or during at home therapy sessions, CAS is always present.

“What is Childhood Apraxia of Speech?”

My husband and I are fiercely protective of our daughter.  She may not be able to speak correctly, but she can understand everything that is said. She understands when people make comments and her feelings do get hurt when she is told she talks like a baby.  We do our best to avoid negative situations, but they do occur. We learn from these situations and we overcome them together.  In addition to improving our daughter’s speech, we are also teaching her to be strong and independent.

“What is Childhood Apraxia of Speech?”

These are the language milestones most 3 to 4 year olds should have reached.

• Say his or her name and age
• Speak 250 to 500 words
• Answer simple questions
• Speak in sentences of five to six words, and speak in complete sentences by age 4
• Speak clearly
• Tell stories

Our daughter has not reached some of these milestones, but she is very smart. Sometimes we translate our daughter’s speech for people and we worry when we aren’t with her.  We are fearful that she will not be understood.  As parents we do our best to teach her tools to communicate.  We tell caregivers about her condition and what certain words mean when she is saying them.  We explain that even though you cannot understand her spoken language, our daughter will do her best to communicate with you.  She has come up with her own signs and she can show you what she wants.

“What is Childhood Apraxia of Speech?”

CAS is time consuming.  We go to a lot of therapy.  Our daughter works with several SLPs and she also completes vision therapy because her apraxia affects her eye movement. We do therapy at home and at night I lay awake thinking of new ways to engage my daughter in language development activities.

“What is Childhood Apraxia of Speech?”

This condition is apart of my daughter’s life she will not grow out of it.  Currently, our daughter has an IEP and she most likely will have one in the future.  As her parents it is our goal to teach our little girl to love learning and school and even though she may face challenges we will be there to support her.

“What is Childhood Apraxia of Speech?”

CAS causes me to lay in bed at night and worry.  Worry if I am doing enough. Worry about my daughter’s feelings and thoughts.  Worry about the future.  I try to stay very positive, but first and foremost I am a mom and I am going to worry.

“What is Childhood Apraxia of Speech?”

Is a condition our daughter has, but it does not define who our daughter is.  Yes, it is apart of our lives, but as a CAS family we have to do things differently than others.  Yes, I have my blog and I share my daughter’s story, but it is my hope to educate people about CAS. Awareness and excellent therapy treatment for our daughter is our number one concern.

Mighty Maya’s Fundraiser