Maya Age 6

As usual life has been busy, and time is flying by.  Our schedule is full.  Maya is in half-day kindergarten, attends therapy twice a week at Schreiber Pediatric Rehab Center and she is currently playing basketball.  CJ is in preschool and receives therapy several times a week as well.  I am extremely proud of both kids.

Maya has grown so much, physically, emotionally, intellectually, since the start of kindergarten.  My worries about Maya entering kindergarten have greatly subsided.  We are blessed that she attends a wonderful elementary school which nurtures her development in a supportive environment.  She is happy and she is learning and that is so much more then I could ask for.

Currently, Maya is learning how to read.  As expected, it is a bit of challenge for her, she has trouble sounding out letters while reading a word.  As stated on the CASANA website,  research has shown that children with spoken language problems are at higher risk for literacy related problems, (https://www.apraxia-kids.org/library/literacy-and-children-with-apraxia-of-speech/).  So to overcome these issues, we read together and practice reading skills at home.  Next year, when she is in first grade, I plan on asking the school district to test Maya’s reading skills.  I feel it is vital to maintain a running record of Maya’s abilities in language and academic skills.

Overall, Maya is doing remarkably well. She loves school and she loves to learn.  She loves her teacher and her classmates. Below, I’ve posted a link to show Maya’s progression over the past couple of years.  She has grown from having poor speech intelligibility to reading sight words.

 

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.)

Maya’s Progression

As you know, Maya has been working very hard over the last couple years to improve her speech and overcome the challenges she faces with apraxia.  My goals for her are to make her speech as intelligible as possible and give her confidence to share her thoughts and feelings with others.

Today, I spontaneously grabbed my phone and recorded her talking.  She is entering a stage in her language development where her responses to questions are delayed.  She is focused on conversations, however, she has difficulty immediately responding to a question. She needs a few seconds to process her thoughts and turn those thoughts into words.

Childhood Apraxia of Speech is a motor planning condition. Maya has trouble planning the movement of her mouth to form the words she is attempting to say, so she will have slower responses to questions and conversation.  She needs time to think about what she is trying to say and as her vocabulary grows, she may need more time to think and respond to questions she is being asked.

I have posted two videos on this blog.  In the videos you can literally see Maya thinking as she is holding a conversation with me.  Her eyes look off to the side as she thinks about our conversation. More importantly these two videos show Maya’s progression. She sings a song, tells a story, holds a conversation and a majority of her language is intelligible.  I am so proud of how far she has come.

SIDE NOTE: I love this graphic, I came across it a few years ago.  It’s focus is on Halloween and Trick or Treat, however, its message can be applied to everyday life. The key words in this picture: BE NICE. BE PATIENT

 

 

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.

Progression

There are 2 videos in this post. The first was taken when Maya was 2 years 3 months old. Her language was very limited, saying single words. Many of the words she would say were not clearly pronounced. This video was taken before Maya received her Apraxia diagnosis. 

The second video was taken on 2/2/2017. Maya is 5 years 5 months old. Her language has greatly improved. She can say complete sentences, but at times her words are unclear. 

The significance of these videos are to show the amount of growth Maya has had over the past 3 years.  Her language has improved, her vocabulary has grown, and nothing stops her from sharing her thoughts and feelings.    

(In the first video she proudly says the word, “leaf.” The second video she is talking about feeding leaves to animals.)

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.)

 

 

 

Fridays & Word Practice

Fridays are fabulous in our house. It’s our day off, we don’t have preschool and most days we have limited obligations. Fridays are our catch up days. We relax, play, mommy cleans, and we can sit down and practice our words. 

Having 2 little ones with Apraxia, at home speech practice is essential. Typically, we incorporate speech practice throughout our daily tasks and on Fridays we have a chance to sit down and go over our words. 

Today, (Friday 10/21) I remembered to record Maya during our practice session. If you listen closely and watch Maya’s mouth, you can see how she struggles with motor planning. Her mouth becomes confused when trying to pronounce the “k sound” (coughing sound) and the “t sound” (tippy tongue sound). ​

Please take a minute to watch Maya practicing the k and t sounds. We are so proud of her. She is very determined and has an excellent attitude. CJ makes an appearance too. ​

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