Waiting On Words – Living Life with Childhood Apraxia of Speech

Before our children are even born we as their future parents always dream about what kind of person they will be, what their personality will be like.  We fantasize about our own children’s hopes and dreams and even who they may want to be when they grow up.  Before my daughter was ever born I always imagined she would be just like me.  I saw her as being outgoing, very talkative and all around a social butterfly making friends wherever she went.  Although I should know by now that life never goes the way you think it will.  I still laugh at the saying “If you want to see God laugh tell him your plans” because life is a total adventure that we will never have plans for.  A few months after Emma Grace’s second birthday she was diagnosed with Childhood Apraxia of Speech and I quickly realized that the little girl I dreamed about was not my same as my beautiful and amazing daughter that God has given me.  Not only has Emma Grace’s daily life changed drastically over the last nine months but our lives as a family have changed as well.   What used to be flexible and open-ended weekdays have now turned into running around to speech therapy sessions, a specialized preschool program and spending hours every day working to help Emma Grace find her words.  I started to write this post as a way to document all the ups and downs of her journey so that we can never forget how far she has come.  Last week families around the world celebrated Childhood Apraxia of Speech awareness day and even though I am a little behind I still wanted to be able to share with you the journey our family has been through over the last year.  Although it is long I hope you stick around and learn a bit about what thousands of children around the world struggle with every day.

Childhood Apraxia of Speech is a poorly understood neurological condition affecting motor speech.  Children with Apraxia have difficultly saying sounds, syllables and words.  The brain has problems planning to move the body parts such as the jaw, lips and tongue needed for speech.  The child knows what they wants to say but their brain has difficultly coordinating the muscle movements necessary to say those words.  Imagine that your child falls or is bitten by something outside.  She comes in crying and trying to tell you what happened but you can’t understand her.  She tries her best to point and come up with the words to tell you but there is only so much that she can do.  What happens when every parents worst fear comes true and your child gets lost or wanders off?  Younger children with Apraxia can’t even say their name let alone their parents or any information that could get them home safely.  These fears and these struggles are what we have come to live with every day.

If you have been a reader for a while you will probably recall that for a long time I would share with you letters that I wrote to Emma Grace.  Each month I would write Emma Grace a letter talking about milestones, how she has grown in the last month, funny moments and all about her changing personality.  I loved these letters as they gave me a way to document how fast she was growing up.  My original hope was that I would take all the letters and put them into a keepsake book for her.  Well, the last letter I wrote was when she was 19 months old and it was by that time that I had a feeling that something wasn’t quite right.  You see Emma Grace was slower to crawl and to walk and we always felt that it was because she was stubborn and she honestly just didn’t feel like it.  So, when we noticed she wasn’t making sounds and trying to form words like she should be we again we just figured she was being stubborn.  It wasn’t until right before her second birthday that I knew deep down in my heart something was truly wrong.  One morning Emma Grace and I were playing and she kept trying to tell me something.  It was the same sounds over and over again and I had no idea what she was trying to say or what she wanted.  I remember saying “Sweetie I’m so sorry, I don’t know what you want.”  She kept making the same sounds over and over again.  Then she climbed up into my lap, put her hands on both sides of my face and started to sob.  Tears are flowing from her face and she is trying to say the same thing over and over again.  That was my wake up call.  It was then I realized, it wasn’t about being stubborn or lazy she truly was trying her hardest to communicate with me and couldn’t understand what she was trying to tell me.  I can’t even put into words the emotions I was feeling at that exact moment.  I put my arms around her and the two of us cried together as I rocked her.

At Emma Grace’s two-year check up she completely failed the verbal/communication section of her developmental assessment and by this point I was scared at what this meant for the road ahead of us.  We started with an initial assessment at our pediatricians office which I was unsure of how much we could actually learn from it.  Emma Grace is very uncomfortable around people she doesn’t know and I had no idea how she would react to someone new in her space.  Well, she reacted just as I expected and refused to even try to communicate with the woman we were working with.  Thus leaving me to answer yes or no to all the questions on the evaluation.  Part of the assessment was also a hearing test to rule out any hearing loss which she thankfully passed with flying colors.  After the assessment we received a recommendation to a local speech therapy office around the corner from our home.  We were paired with a therapist who was extremely passionate about her work, was patient with Emma Grace and very down to earth.  We started with private therapy sessions one day a week because Emma Grace just wasn’t comfortable during her sessions and wasn’t even responding or interacting with her therapist.  At this point we were struggling at home because she was frustrated and started to act out.  She went back to being angry all the time and yelling and screaming and crying.  I wanted to rip my hair out because I couldn’t find a way for us communicate.  She has always been so independent and has always wanted to do everything on her own but as soon as she realized that she needed help or couldn’t figure something out she didn’t know how to ask for help.  It felt that we were moving backwards by leaps and bounds and not even moving an inch forward.  I knew she was frustrated and my heart ached for her.  I couldn’t even imagine knowing what you want, knowing what words you want to use and trying over and over and the words just don’t come out.

After a month we quickly realized that the best option was to just dive in and start two sessions a week because no matter how hard I tried to work with her at home we weren’t getting anywhere.  Even after she slowly started to warm up to her therapist, another month went by and we still were stuck ten steps back.  We then started talking about other options.  The practice that we were at offered a pre-school program with teachers that specialized in children with special needs and were well-trained with children with limitations in speech.  We slowly started introducing the idea of the preschool to Emma Grace by bringing her into the gym with the other children to play for a few minutes at each session.  At this point she had developed full-blown social anxiety.  She was okay around some children, as long as they didn’t try to talk to her and kept their distance.  Adults where a different story, she would refuse to look at anyone who tried to speak to her and would emotionally fall to pieces if they tried to talk to her.  There have been several times at the grocery store where a cashier would grab the cart with her in it and move it to the end of the counter to bag our groceries.  Emma Grace would have what I can only describe as a form of a panic attack.  She would start to shake uncontrollably and cry as if someone was causing her physical harm and scream as if she was in excruciating pain.  I’ve never seen toddler meltdowns or temper tantrums like that before in my life.

Amber Foster Smith Photography

We knew at this point that enrolling her in the preschool would not only help to stimulate her speech but hopefully calm some of her social anxieties as well.  It was at this point that Emma Grace was officially diagnosed with Apraxia.  This was one of the hardest parts for me.  After many more specific assessments her therapist was comfortable confirming our suspicions that she did in fact have Apraxia even though it seemed to be a more mild case.  I struggled because after months of not knowing we finally had a diagnosis.  Even though I should have been relieved I went through a period where I blamed myself.  After battling Hyperemesis Gravidarum through my entire pregnancy with her I wondered if it was something I did.  I thought back to the days and weeks where I went without eating and the toll it took on my body.  The darkest weeks of HG were in the first few weeks which are also the most vital periods for brain development.  I kept thinking to myself what if all of this was caused from what I deprived her of while she was growing inside of me.  She counted on me to take care of her, to get her into this world safe and healthy and I felt like I failed her.  I battled these feelings for weeks but kept them to myself.  One night while rocking Emma Grace to sleep I felt completely overwhelmed and started to cry.  I prayed for the longest time and I finally decided it was time to let go.  Twelve weeks into my pregnancy we had a scare and I thought I had lost her.  On that frightening walk to the ultrasound room I kept saying over and over “If you can fight for me I promise I will always fight for you no matter what.”  It was that night that I remembered that promise I made to her.  No matter what I had to put my feelings aside and put all of my effort towards fighting for her.

Preschool didn’t start off well because Emma Grace had trouble getting over drop off and wasn’t comfortable in her new surroundings.  Soon though she found comfort in a friend who also had Apraxia.  These two girls together were amazing to watch, they had this connection where they found friendship without having to use words.  At this point I didn’t care one bit that the two girls didn’t really try to even talk to each other.  For the first time I knew my daughter had a friend who understood her, who got her like no one else could.  This friendship was a major milestone for Emma Grace that helped turn a corner.

At the same time she started preschool I also enrolled her in a Mother’s Morning Out program at my church one day a week.  To her preschool was “safe”.  Both the children and the teachers there “got her” and patiently worked with her.  I looked at the MMO program as a way for her to meet more friends in different setting where the focus was completely different.  For one day a week she was set in the middle of normally developing, happy, social children that wanted nothing more than to play and interact with each other.  Yep, pretty much sounded like my daughter’s worst nightmare but I knew the only way for her to grow socially was put her in a situation where she was physically safe but emotionally uneasy.  It would take time but eventually she would learn there was nothing to be uneasy about.  We again ran into the same problems where she didn’t want to let me go and for the first few weeks I would get a phone call 2 hours in that she had cried the whole time since I left and had never calmed down.  It killed me but I knew it would eventually pay off.  Our turning point at MMO was the week where I stayed to work the entire morning and she felt “safe” almost as if I was there to protect her.  I pushed her to interact with the other children and it paid off.  I have a video that I will always cherish where she is playing ring around the rosie with four other girls.  At one point the other girls quickly got up, grabbed hands and started to dance around before Emma Grace could even stand up.  Once she was up she looked back at me with this look of “Mommy I don’t think they want me to play with them.”  Within a split second one of the girls grabbed her hand and pulled her into the circle.  Her face lit up.  I knew at that moment she felt accepted.

Over the next few months she started to make improvements.  She started to be open to trying more things.  After being in the 2-year-old preschool program for 3 months her teachers felt it was in her best interest to move her up to the 3-5 year old class.  At barely 2 1/2 years old I was afraid of how she would fit in.  I was afraid what she would do when she found out she was loosing her closest friend.  I feared that it might set her back.  I put my trust in her teachers and I’m so glad I did.  The older girls in the class room took Emma Grace under their wing and took care of her.  They each helped her and encouraged her in their own special way.  Now we are another 3 months out from being in the older preschool program and things are going great.  We slowly found that as her self-confidence grew she seemed more willing to try new sounds and new words.  Each week our therapist sent us home with new worksheets and flash cards to work on.  For the girl who has no patience she will sit there for 30+ minutes and practice her words over and over again.  She finally has started using true two-word sentences that don’t include “please” or “more” as the second word.  Over the last few weeks we have even seen good success at three word sentences even a rare four!  Last week she even started her version of “What’s that?”  Emma Grace has made so much progress over the last 9 months that I am extremely optimistic about her journey with her speech.  She has shown us that no matter what, Apraxia does not define her.  Every child deserves a voice and I am forever grateful to her therapist, her preschool teachers, everyone at her practice along with all of our friends and family who are supporting her in this journey.  We will never give up no matter what.  Apraxia can not be cured but only overcome.   We still have a long journey ahead of us and in the mean time we will patiently wait for each new word and celebrate every milestone!

Apraxia Awareness Day

Want to learn more about Childhood Apraxia of Speech?  Visit The Childhood Apraxia of Speech Association of North America and get educated.  Help spread the word about CAS because every child deserves a voice!