Childhood Apraxia Of Speech – The Fight To Be Heard
In honor of Apraxia Awareness Day (Annually on May 14th), I wanted to journal the past three years of our fight with Childhood Apraxia of Speech (CAS).
I hope that family and friends will find it interesting and that maybe it will help someone else with similar struggles. Trey is doing so well now that he has had the right services that I hope these thoughts may be a distant memory in a few more years.
What is Childhood Apraxia of Speech?
The Childhood Apraxia of Speech Association of North America (CASANA) describes CAS as “a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. The challenge and difficulty that children with apraxia have in creating speech can seem very perplexing to parents, especially when they observe the skill of learning to speak developing seemingly without effort in other children.”
As I learned during our testing with Trey, a major red flag for CAS in a young child is when their receptive language is far greater than their expressive language, which sets it apart from a simple language delay even early on. It can be caused from a known neurological impairment, occur in conjunction with other complex neurodevelopmental disorders, or as in Trey’s case, no known cause at all.
There is no cure for CAS and it is not something a child outgrows
Many adults with CAS have joined our apraxia Facebook groups and speak of the difficulties they still face, even though most of them now live normal lives and a stranger would never know the struggle. Some of them report being told they sound like they have an accent from somewhere they have never lived.
When researching how to treat CAS, you will read about several things that have not been studied such as using Omega 3's or other dietary adjustments. The one thing that has been studied and proven to help is frequent, intensive speech therapy with a practitioner familiar with the disorder using many repetitions, visual and tactile cues, and a focus on speech sequences.
It wasn’t until we found the right Speech Language Pathologist (SLP) that we saw any significant progress with Trey and unfortunately, because it’s not a common disorder, it is hard to find an SLP with the right knowledge. An actual SLP said, “it’s called Childhood Apraxia because he will grow out of it.” Um, no. It is called childhood because unlike acquired apraxia that can happen to an adult after a stroke or other trauma, the child is born with the ailment.
It is important to note that it is rare for a child with CAS to only have issues with speech. Because it is a motor-planning disorder, the child is much more prone to fine or gross motor issues in other parts of the body. Learning disorders and dyslexia are also common. While early tests were not sensitive enough to show Trey had issues anywhere but speech, they are now apparent. Every child with CAS will have a very unique story, but we all face similar physical, emotional, and financial battles.
Here is Trey's story, told by me...his mother.
Is There Something Wrong?
I first started to get concerned about Trey when he was only 9-months-old.
This may sound crazy since even average babies don’t have words at this age, but Trey was just different. He didn’t babble often and when he did, it was almost always, “dada.” He had no other consistent consonants. I would hear another one like “yaya” one-time and then never hear it again. He drooled excessively whether or not he was teething and he seemed to pause and grope with his mouth searching for his intended movements. He would soon start to use an exhale nasal snort in attempts to communicate instead of using his voice.
Trey and his snort at 12-months-old
I was part of a Facebook group for moms with two or more young children who all had babies close to Trey’s age. When Trey was 10-months-old, I voiced my concern out loud for the first time using this group of moms who had someone to compare Trey to. I asked them...
"What are your babies doing verbally? My older has always been verbally advanced and I think I'm unfairly comparing my two...or maybe I should be worried. Not really sure. My 10-month-old does make sounds back and forth with me, but his only consonant sound is "d." He repeats "daddy" very well and every other sound he makes is a grunt, squeal, or "dada.”
I always got the same responses from them and from my friends and family… “He’s too young to be worrying” or “He will talk when he is ready.” At his 12-month check-up with the pediatrician, I voiced my concerns and was told, that while it did sound abnormal, he was too young to begin treatment. We agreed to wait until his 18-month check-up.
Time For His Evaluation
At Trey’s 18-month check-up, the doctor officially gave us a referral for therapy, however, the realization of cost hit me; “how are we supposed to pay for speech therapy if he qualifies?”
Even though we had pretty good health insurance in comparison to some, it only covered 40% of costs for 40 sessions per year of any type of therapy. That would leave us with a humongous bill. Thanks to a weekly play group we attended, I had heard that all states have an early intervention program. This program in North Carolina is called the North Carolina Infant-Toddler Program which is available through Children’s Developmental Services Agency (CDSA). I called them and requested an evaluation.
The CDSA representative came to our house along with a developmental pediatrician who did the evaluation. I wrote to my Facebook group,,,
“Had my 18-month old evaluated by the state funded free evaluation from child development services today for his speech delay. He only had to be 30% delayed in language to qualify and he was 78% delayed!!! Hooray for help at least. They come back Thursday to visit with him again and go over the therapy process and financials and then he will begin his official sessions.”
It was lucky for us that I had been on maternity leave for 3-months of the prior year because our taxable income that year put us in a bracket where the CDSA covered everything my insurance wouldn’t. Trey was going to get what he needed!
Or was he?
Speech Therapy Begins
The CDSA aims to treat the child in a comfortable environment for the child. They search to find someone who will come to the child’s home or preschool. Since Trey did not attend preschool, they wanted to treat him in the home. Unfortunately, they were not able to find anyone available who was willing to drive out to our rural community.
We met our first SLP at a local library when Trey was 19-months-old. She was young and kind, but very inexperienced. I learned that she was actually still in her training-year that is required for an SLP before they are licensed to work independently. I was open-minded and hoped that she would be eager to learn and turn out to be exactly what Trey needed, but 6 weeks into it, I realized this was not going to be a good fit. I felt like we worked on signing, “more” for the entire 6 weeks with no attempts to teach speech and certainly no methods Trey was responding to. I started to feel like we were losing precious time for Trey to catch up.
Hearing Childhood Apraxia of Speech (CAS) For The First Time
I had Googled speech disorders a thousand times by now and had seen Childhood Apraxia of Speech pop up. Trey seemed to fit the description perfectly, but seeing how difficult it was to treat and how rare it was, I hoped it was just coincidence.
My recently married cousin knew about Trey and mentioned to me that her husband had a relative, Leigh Mazaleski, M.S., CCC-SLP , who might be able to help. I had no idea what to expect when we drove 1.5 hours that day to meet her, but I knew we needed help and she was willing to meet Trey so I was going!
As it turned out, Leigh had recently attended CASANA's Intensive Training Institute and was highly knowledgeable in CAS (a rare thing to find!). She did a thorough evaluation on Trey to offer guidance to our current SLP and here is a sample of what she wrote about Trey:
"Interpretation: Trey exhibits symptoms that may indicate a motor based speech disorder. Trey has a history of being a quiet baby, a marked delay in acquisition of expressive language milestones, a significant gap between comprehension and expression, a limited repertoire of consonants and vowels, an inability to imitate simple mouth movements or sounds, a clear desire to communicate, an unusual snort as his “go to” sound, and an elaborate (self-taught) gestural system. His expressive language is severely disordered, in the presence of normal structure and function, normal hearing, and adequate cognitive functioning."
After explaining she highly suspected he had CAS (too early to diagnose as Trey would have to be able to attempt verbal imitations) she offered us many tips on things to work on. She even let us video her as she described ways I and our SLP could help Trey. I remember leaving her feeling like a giant weight had been lifted. Some would think getting a suspected diagnosis would be hard, but by this point I knew something was wrong and I needed validation on what it was.
Upon leaving, I texted my husband, Josh, with my excitement and got back what felt like anger from him. I had long passed my denial phase and he was just hitting it. I definitely empathized with Josh’s feelings. CAS, while not threatening to health in any way, can be a hard diagnosis to swallow.
At this point in our lives, we didn't know if Trey would ever catch up to his peers and not need therapy, or even be able to speak at all.
Leigh emailed soon after stating that part of her requirement to complete CASANA’s program was to do a case study on a child and since there aren't many studies on younger children suspected of CAS, she asked if Trey could be her focus. (She would also later use some of the videos in her teachings to other SLPs).
I was elated!
This gave me more reason to keep in close contact with her during this difficult time. I kept her updated on Trey’s progress (or lack thereof) and began taking purposeful videos of his snort, speech, and sign language. Leigh became the support I needed; a listening ear, a guiding light giving me tips every time I mentioned a concern, and she always gave me encouragement to keep pushing (I should point out that we didn't simply use Leigh as our SLP due to financial restrictions, lack of available time for her, and the drive was unfeasible).
I am so glad I have these videos and conversations to look back on now. Our first useful at-home tips came from Leigh and you can see an example of one in this video. Here is one way to make purposeful noise fun.
A little later in time at 22-months-old-tip from Leigh in use
This Isn't Working, Time To Switch SLP's
After my time with Leigh, I told our SLP about the amazing experience and showed her the video Leigh had made with tips on how to help a child with CAS. When she hadn’t used any of the tips and we were still practicing signing “more” 3 weeks later, I parted ways with her. She was not beneficial to Trey at this point.
A couple of weeks later, when Trey was 21-months-old, the CDSA found him our second SLP. While she couldn’t come to our house every treatment, she agreed to meet us at the library once a week and at our home once a week. I was very excited during her initial evaluation as she seemed much more experienced than our first (though I would later realize she was not highly knowledgeable on CAS as she seemed to treat it as more physical rather than neurological) and immediately began giving me tips to do at home (including this one in the video below that Trey really took to: mouthing words without the complication of adding sound to them), increased his therapy sessions, and requested on occupational evaluation for Trey. She was also skilled in sign language which we had started to use at 15-months-old at the pediatricians suggestion as a way to ease Trey’s frustration with not being able to communicate verbally.
22-months-old-mouthing without voicing
Trey passed his occupational evaluation with flying colors. The SLP wasn’t really concerned about fine motor at this point; the evaluation was more inspired by her concern for what seemed like over-sensitivity to things, but to this day, I very much believe Trey was simply frustrated at not being able to talk! Both the SLP and OT suggested an ENT evaluation at one point hoping to pin his nasal snort on a physical deformity, but we decided along with other opinions, that this would be more traumatic than it was worth since we already assumed it to be related to CAS.
A few weeks into our speech sessions, it became apparent that Trey didn’t mesh well with this SLP and I started to worry that her methods were not effective for CAS. Trey would participate with her somewhat at our home sessions, but he felt no motivation with her at the library and would literally run away in the large space. Then, she dropped the bomb on us that her caseload was increasing and she would no longer be able to make the drive to our house. She wrote...
"I regret this as I know Trey was more spontaneous at home, however, there are lots of children in the area that need services (sad face!).”
She was willing to keep seeing Trey, but only if it was always at the library. I made the decision to stop seeing her. No point in continuing ineffective therapy.
Frustration Increases, But So Does the Support
It was during the time with SLP #2 Trey said “mo” twice seemingly meaning “more.” He would not say it again for many more months (another sure sign of CAS). He also did a two-part sign!
His frustration was really increasing though because he still had no speech and he wasn’t picking up sign language as fast as his brain wanted to communicate. He had an intense meltdown in a restaurant and we absolutely could not figure out what was wrong: he wouldn’t stop! Josh and I took turns playing with him away from the table while the other could eat. It was soon after in other restaurants we began to realize he simply did not want to be in a high chair…he wanted to sit in a big boy chair like his sister and was unable to communicate this to us. I briefly considered picture communication which is somewhat common with non-verbal children, but realized sign language was still the best option as it required no materials whatsoever.
I was most grateful to have Leigh's support during this time between SLPs. With our at-home tips, Trey began to progress more with me than he had during these past months in therapy. I kept in close contact with Leigh giving her updates and videos for her case study, but also venting and asking many questions. She always responded with encouraging words and more things to work on at home. She once wrote (and you’ll see one of many reasons why I loved her so: making me feel like a supermom)...
“I honestly feel that if Trey had not had you as a mom, he would have fallen through the cracks, and I am very sure that many children with similar problems do…fall through the cracks and exist in this world “without a voice.” You noted concerns at 12 months and again at 15 in well-visits, you sought advice from a parent group, you insisted on referral to EI at 18 months, you did your own research and knew almost immediately that ST was not working and sought a second opinion, you stood up to an SLP changing the therapy site to one where he would become distraught (and recognized that she probably was not using a CAS specific approach), you kept searching and investigating possible therapists; and throughout it all, kept up home training from my early suggestions and video instruction…noting several times that his most significant progress had come more from your home therapy than from the SLPs working with Trey.”
It was through our at-home work, that Trey started to attempt some imitation of sounds which was both exciting and scary as it became more obvious he was not capable of many sounds. He was not a late talker or choosing not to speak: he had CAS, but we were going to keep fighting!
A video at 22-months-old practicing imitation
Becoming A Mom Of A Child With CAS
At some point during this process, I realized that I was becoming “that mom;” the one professionals dread dealing with because I wouldn’t accept just any therapy that looked good on paper. At one point my CDSA contact implied that Trey was not progressing because I didn’t keep him with one therapist long enough. I kept my cool despite my anger at this because she had been very kind up to this point.
I was heavily involved on Facebook groups for CAS; learning all that I could to help at home and venting to parents who were also having trouble finding the right SLPs.
Parents of children with CAS and other related disorders often call themselves “in-between parents,” when there are no other major comorbidities. We don’t quite feel like we fit in with the “special needs” crowd as our children appear quite average to a stranger who doesn’t speak to them, and we know that there are parents who have so many harder struggles like health battles or having a child who can’t walk or eat independently. But then, we don’t quite fit in with parents of children who are typical-developing as they don’t understand the fight that we and our children go through to complete seemingly simple tasks for other kids or the constant appointments on the calendar.
I used to cringe at every Facebook post I read about kids younger than Trey talking (even though my very own daughter was an early talker). One blog post we all shared in our groups nailed my feelings to a tee and it brought great comfort to know I wasn’t alone in this: 5 Truths Apraxia Will Teach You.
Never Give Up. Time To Find SLP # 3
Even though they are supposed to find someone to treat in the home, I had already said I was willing to drive up to 45 minutes one-way for a good therapist, but I was getting very little from the CDSA. Despite having been accused of being at fault for Trey's not progressing (due to changing SLPs), I don't take this inability to find an SLP personally as I was probably known as the picky mom and finding someone to suit me would be difficult…so I took matters into my own hands.
I started to get myself informed about local SLP's by researching, calling, and emailing them myself to see who was available, experienced with apraxia, and contracted with the CDSA. I found two I was interested in, but one was on maternity leave and one didn’t have any openings.
Then I found one who sounded perfect! She lived in our rural county, was willing to come to our home, had apraxia experience, and really emphasized play-based learning. We emailed back and forth for a bit and I cleared everything through the CDSA and then…she dropped off the face of the earth. To this day I haven’t heard another word from her. I literally searched obituaries. Contact just completely stopped. I left her emails and voicemails as did the CDSA but they eventually ended up reporting her for the unprofessionalism.
I started the search again.
The CDSA offered no options during this time. We stayed in contact and I know they were trying, but everyone they spoke to didn't have time for Trey. Finally, when Trey was 23-months old, one of the SLP's I had been interested in previously said she was coming back from maternity leave and had time to treat him if we were willing to drive to her practice about 40 minutes away. Our first meeting with Kristen Kershaw Swanson, M.Ed.,CCC-SLP with Connections Speech and Language Therapy went extremely well and while I didn’t know it for certain yet, our lives with CAS were about to change for the better with her.
What Do I Do With My Other Child?
Something else many parents face is that the child who has special needs and the many appointments that come with that, is not their only child.
My daughter Sydney was 3, 4, and 5-years-old through all this and we were always having to figure out what was best for both kids. In the beginning, my mother who is a teacher was out for the summer and kept Sydney. Then I began having to have her present during therapy appointments and it was not going well for any of us. Sydney always felt the need to be in the spotlight and had a hard time playing on her own or even with me and letting Trey have time with the therapist.
We eventually started getting my sister to babysit Sydney as our schedules conveniently worked out most weeks, but later when Trey’s therapy frequency was increasing and we saw an opportunity for a part-time preschool for Sydney, we took it. Everyone was really great with working around that schedule.
Time For Progress!
So back to SLP #3 and all of her splendor. Kristen was fluent in sign language and she was familiar with apraxia and how to treat. We put a pretty big focus on signs in the beginning using simultaneous communication to ease Trey’s frustration, but she was great to never let it overshadow his need for speech.
This video is also a little later in time when he is 28-months-old and has some speech, but is the best one I have of us practicing sign language.
Our first step was to get Trey to make spontaneous noises and to start to imitate simple words and she was fantastic at thinking of things to play that would bring out his noises. Trey was hesitant to participate at the beginning of each session and this was our biggest challenge. He often refused to do what she had planned so she would go with the flow and find a way to make use out of whatever he wanted to play. She used multimodal cues quite often and substituted word approximations to help make hard words easier for Trey to attempt. Within our first couple of sessions, he was already imitating signs and offering word approximations in attempts to repeat her. She would sign and say “more” and he would sign and say “mah.” She would sign and say “in,” and he would sign and say “nanana.” This was huuuuuuge!!!
On a sadder note I wrote to Leigh...
“Trey had his IFSP (Individual Family Service Plan through the CDSA) review yesterday and it was a little saddening to hear his original goals and how, six-months later, we have yet to really achieve them. But, on the bright side, 6 months ago, I had no idea what I was up against. Now that I do, these minor milestones feel like completed marathons."
With the acceptance of how slow progress could be, we were ready to fight on with Kristen!
In just another couple of weeks with Kristen he was consistently repeating several words as long as they started with an easy consonant sound and ended with a vowel sound. If they started with a vowel or ended in a consonant, he would omit letters or just stay silent as he had no idea how to move his mouth to form these words.
He needed to first see a word being said to even begin to think about saying it himself. Sometimes when I would ask him my name, he would say "dada" instead of "mama" and you could tell by his face he knew that wasn't what he meant to say, but he couldn’t correct it without me saying it first. But, this imitation of simple words quickly progressed to answering simple questions such as “what does the cow say?” and he would reply, “mah.” We decided to teach him “Ninny” as an approximation for his sister “Sydney” which was much too hard for him to say. He took to it quickly.
At 25-months, he repeated any word that began with d, n, and m and ended with short a, short o, short u, long u, short i consistently. A few other consonants would come and go such as b, g, s, h, p but he couldn't add vowels to s or h at all. I continued to use all of Kristen’s and Leigh’s tips at home and we started to work on the vowels. I had Trey silently mouth “E-I-E-I-O” from old McDonald and soon after, he could actually sing that part! I started making Trey repeat a sign or word approximation to ask for what he wanted (when I could figure out what that was) before he could have the item for which he was pointing, grunting, or snorting.
Sydney and Josh became great supports during this time. Sydney, 4-years-old at this point, began to learn sign language with the rest of us by watching Signing Time DVDs with Trey and she became quite the at-home-SLP. She was always trying to help Trey. In general, she loves to stand up to authority, but in the case of Trey, she seemed to already know how important it was for him to get the right help, so if I ever gave her corrections or pointers, she listened. I would come home after therapy sessions and fill Josh in on things we were working on and ways he could help.
February 20th, 2015 was a day I'll never forget. I wrote to Leigh...
“After just telling you he still says nothing spontaneous, today he has said all of our names..."mama" "daddy" "ninny (Sydney)" and "bubby (my mom). He was doing things at various times of the day (silly things like hiding behind curtains and standing on books) and wanted someone to acknowledge it and he would say the name of whomever he wanted! We gave him lots of positive silly feedback and he continued throughout today.”
This was probably the biggest turning point in our CAS battle.
Imitation counting at 26-months
In May, at 28-months-old when Leigh checked in about his progress I wrote...
“He is still mostly unintelligible, but he is TRYING which is huge from a kid who used to do nothing, but snort. His first word was 3 months ago, last month he had about 8, today I have lost count of his approximations. He attempts to spontaneously say something new every day. Our therapist has been fantastic in getting this out of him and he is very comfortable there. We are approaching a point though where I think it will be vital to start helping him more with pronunciation.”
Old McDonald at 28-months
And then the next week I responded to Leigh when she asked for specifics...
“As far as his "words" some examples are that he has sound and sign approximations for all basic colors now. He makes name attempts for everything if asked...bear is "bea"...something harder like shirt he would just say "uh", but he tries! Today in the store he saw blocks that he wanted and he pointed and yelled "bah bah!." He is getting pretty good at all the vowel sounds, though they aren't 100% consistent. He is awesome with several consonants now at the beginning of words...b, d, g, m, n, p, w, y. He can also make h, k, s, and t sounds alone, but can't quite add vowels to them yet. He has a hard time ending with consonants still, but doing better. He does not use spontaneous language often yet, but it is there, and it is beautiful. He loves to sing. Singing really brings him out of his shell. Favorites are "Happy and you Know it" and "Old McDonald" which I will try and catch on video. He follows his sister around and tries to repeat everything she says in their little games. He said his first spontaneous two word phrase too...hurry mama..."u-wee mama."
Working on putting sentences together at 30 months. Also a good example of how even I was not always able to understand him. I was trying to get him to name each of the objects and then say they were in the bowl to form sentences. After filming I realized he was actually taking it a step further and was trying to tell me the apple was on top of the cookie.
By July, he was putting 2-3 word approximations together to form short sentences. I was so excited, I couldn’t wait until our next session to tell Kristen so I decided to email her...
“We were playing off of last Monday's session with play food and he said "cookie in bowl" on his own. Then he put an apple in too and said "apple top cookie." He names how many of things spontaneously in 2 parts i.e "three balls" or "five animals." Outside he pointed to swing and said "in swing." Once in, he said "you, me, high." We have this music CD that is supposed to be great for speech called Sing Out and he repeats a whole phrase of it spontaneously singing on his own, "open up (the) window." A lot of it of course would not be intelligible to anybody but me, but wow! Such progress!”
Everything was going so well...but then a huge bomb dropped right in the middle of all of our progress.
Spontaneous conversation at 31-months
It was time for our IFSP review which also meant time to reevaluate the financial part of it all. Our CDSA contact warned that they had made some changes to their funding brackets and I felt a sinking feeling in my stomach. Sure enough, we were told they would no longer be covering 100% of out-of-pocket expenses, but instead only 20%. We would be responsible for 80% of the cost of Trey’s speech therapy which would add up to hundreds of dollars per month.
My husband and I had lengthy discussions about how we were going to come up with the money and we realized we simply could not do this without dipping into the kids’ college funds which just seemed so unfair!
After my pity party, I decided to take action and keep on fighting.
I had seen that grants existed for children through my CAS Facebook groups, but I had never really researched them. I realized Trey might possibly qualify for the Small Steps In Speech (SSIS) grant or the United Healthcare Children's Foundation (UHCCF) grant.
Both grant applications required an explanation of physical and financial need from the parent, notes from the provider, and could include pictures or videos if desired. Of course I sent them tons of media of my sweet little Trey! Who wouldn’t want to help him?
Weeks later when I opened my email and saw that I had received an email from SSIS, my heart started beating out of my chest. I opened it, and as I read it, tears of joy, pride, gratitude, and sheer disbelief ran down my face. We had received a grant!
I immediately called my husband, emailed Kristen and Leigh, and texted everyone I knew. I was so excited! My boy was going to be able to continue services with this wonderful SLP without breaking the bank for a little while longer. As if this weren’t exciting enough, just 2 days later I got an email from UHCCF stating we had been approved for their grant too! My heart was so full that day. I am forever grateful to these organizations.
In case anyone is curious how the grants works, I wasn’t just given a large sum of money to spend wherever I wanted. In the case of both grants, the funds could only be used towards Trey's speech services. UHCCF asks that the parent send bills to them, with proof of each service and costs, and EOBs from insurances proving that the bill wasn't covered in full (as this grant is intended for children with health insurance coverage, but medical needs the insurance will not cover). They will then either pay the SLP directly or refund the parent. In the case of SSIS, they require the SLP to make frequent progress notes and send an update at least every 3-months on the child along with the bill. In return, they pay the SLP directly. I am so thankful for an SLP who was willing to put in this extra time on paperwork for Trey.
Still in July, when Trey was 30-months-old, Kristen did an annual evaluation on him. She noted the results were “a vast improvement from when therapy [with her] began 7 months ago. At that time, almost all of Trey’s non-sign communication attempts resulted in use of nasal emission, or ‘snorting.’….he has transitioned to less frequent use of nasal emission communicatively (to about 20-50% varying day to day.")
He would often start his communication attempt with his nasal snort, but we could verbally remind him to “use your mouth,” and he would switch to speech. Kristen also noted he was beginning to transition from sign being his primary communication source to verbal attempts being primary. The main thing that had become quite prominent is that not only did he omit syllables and leave off many consonants, he was beginning to substitute just as many with a “w” sound. She wrote “treasure” was pronounced “ehweh” by Trey. She concluded with, “overall, these results, though representative of vast improvement, continue to constitute severe articulation disorder, most likely due to childhood apraxia of speech."
More confirmation of CAS!
Upon seeing Trey's improvements, I had family and friends ask if I thought he was just a late talker and was starting to develop now. This was like a slap in the face (and still is) because we worked our butts off! No, he didn’t grow out of it. We did that! We were fighting apraxia one day at a time!
Amongst all the progress, we still had a few downhill slopes...one of them being stuttering.
He actually still stutters quite often, but this is considered a normal development in many children. The problem for him was that speaking was already such a challenge, that when the stutter first appeared, it made him very frustrated and he took spells where he would stop trying. It was very difficult to watch. Several times he would stop and say “mouth is broken,” and not try to finish his original sentence.
Time To Transition To The School System
When a child turns 3, they transition into getting therapy through the school system instead of the early intervention programs. The awesome side to this is it’s 100% free for everyone. The not-so-awesome side is that you no longer have any choice in therapists (thankfully we had our grant money and could potentially continue seeing Kristen for a while).
As part of the transition processs, when Trey was 32-months old, I met with the preschool program director. I immediately felt major negativity from her. Without even having evaluated Trey, I was basically made to feel crazy for thinking Trey could have something as rare as CAS. She also kept reiterating that he may not even qualify for services.
I wasn't there to argue, but when presented with a fight, I fight back. It was time to align all of my proof of Trey's diagnosis and need for help, and be prepared for anything thrown our way.
A friend helped line up an advocate to answer questions about Trey's rights and to come to the IEP meeting if I needed. During the grant process, I had already gotten the pediatrician to write down on paper that Trey had CAS and Kristen had documented that he likely had it. I contacted Leigh and asked if she had the time to see us and officially diagnose him so I could have more testament to the facts and she was happy to meet and evaluate him again.
On September 11, 2015, Trey was officially diagnosed with Childhood Apraxia of Speech.
After a brief depression period, my husband finally joined me in the acceptance phase of grief. We had a beautiful, loving, happy, perfect little boy who just happened to have CAS and we would never stop fighting.
In October, when Trey was 33-months-old, the school system did their evaluations on Trey and I was armed and ready with documentation of his diagnosis. After the negativity from the coordinator, I hadn't expected much, but I was actually quite impressed with how thorough the exams were. Trey’s speech had improved so much during this time, I was beginning to doubt he would qualify as delayed enough to receive school services, but a surprise came that can be felt as negative or positive for us: in addition to Trey’s issues with speech, his fine motor skills were starting to fall behind and he also had a large discrepancy between his IQ scores (135 for verbal!!! And only 85 for performance) qualifying him as “developmentally delayed.”
While this sounds like a bad thing to hear, as parents in the acceptance stage, we knew that this would give the school more funding towards Trey and he would receive more services. We also were already knowledgeable on the fact that CAS usually has other signs and symptoms besides problems with speech so we weren’t shocked at the news.
We had our Individualized Education Plan (IEP) meeting two months later in December. During the meeting, I learned Trey would be receiving speech therapy once weekly for 6 out of 9 weeks, occupational therapy once weekly for 4 out of 9 weeks, and exceptional children’s services once weekly for 6 out of 9 weeks. We were pleased with this, especially considering we still had some grant money to continue private speech therapy for a while.
The absolute best part of the meeting came when the psychologist was explaining Treys IQ scores and delay in the fine motor area and he said, “this really correlates with his apraxia diagnosis, don’t you think?” speaking to the program coordinator (who originally was so negative about Trey having CAS) and she had to reply out loud that it did appear he had it. Bam!
If I didn’t have the level of self-control that I do, I would have jumped on the table pointing and yelling, “I told you so! Nah, nah, na boo boo.” But, alas, as a respectable mom, I didn’t. I just had to smile on the inside.
Trey singing Jingle Bells at 35-months
Graduation From Private Speech Therapy
After his third birthday, Trey started therapy with the school system. I have to say, I was extremely thankful we still had our private speech therapist since most of Trey’s progress in speech was coming from her, but I do enjoy the group he works with at the school.
The exceptional children’s service is not always tailored to the child so Trey who has that very high verbal IQ does not always benefit (he already knows all his letters, numbers, colors, etc.), but just this week I did remind them during practice with a puzzle that Trey's performance IQ is on the lower side and thus problem-solving tasks are very difficult. I'm glad I did because they seemed unaware of this and I do think they really do want to help. The occupational therapy is definitely needed so I’m happy we are there. Because Trey has motor-planning issues, things like holding a pencil tight enough and moving it to make an intentional mark are extremely difficult.
A comparison of Trey at 30-months vs 36-months
His speech progress felt slow at the time, but looking back, these last few months have been really remarkable. He continued to substitute many of the harder sounds with with “w,” so chair was “wair”, juice was “wuice,” food was “wood,” etc., which was making him less intelligible. Some of these sounds weren't even age-appropriate for a 3-year-old, but "w" was not an acceptable substitution. It was even more difficult to understand multi-syllabled words. But Kristen continued to work diligently with him and send me home with tips. She worked to make sure he developed all age-appropriate sounds and had appropriate substitutes for those too early to master, so for example he should pronounce "j" with "dz" instead of "w"..."jump" is "dzump," not "wump." And eventually, one by one, each sound began to click.
Trey was doing so well that on April 25, 2016, at 39-months-old, Trey was discharged from therapy with Kristen.
She did some informal testing that day to ensure she wasn't missing any abnormal processes still going on with him. He had a few minor errors, but testing proved he was at an age-appropriate level. This was an extremely emotional day. Of course, I’m happy he graduated! My son had made remarkable progress, but we had grown so attached to Kristen that I sobbed telling her goodbye and then leaving her office and telling Trey. I texted Josh, who shared some tears with us, and then spread the word to all my close friends and family. What a big day for Trey!
Where We Are Today
Today, Trey remains in the program through the school system for speech therapy, occupational therapy, and exceptional children's; however May 11th, 2016 was our last session for the school year. He will pick back up with them in August. I miss our sessions with Kristen, but absolutely trust her expertise in discharging him and she will re-evaluate Trey in one year to make sure he remains at an age-appropriate level. It is not out of the question that Trey may have to return to therapy if these remaining sounds do not develop without her.
His speech is not perfect, but Trey is so smart, that he is learning to hear and correct errors on his own that he is capable of. Just last week he made his first “L” sound! The sounds that he can’t make perfectly yet are not considered age-appropriate sounds for a 3-year-old and he is almost never substituting with “w” now. Because of apraxia, he is often less intelligible with longer sentences. He blends words or drops sounds or syllables. We just have to listen for these things at home and repeat what he meant to say correctly as one would do with a typical-developing child. He continues to have some normal stuttering and some not-so-normal mouth groping and sound repetition as in, myself, he might say, “myself ffff fff fff.” He is obsessed with his tongue at the moment and he cannot spit or sometimes blow on command.
We also still have some potential battles ahead of us to make sure he is getting what he needs in all areas. The school system has been doing his ST, OT, and exceptional children’s all together…meaning he sees all three of them in the same 30-minute session so while he should be getting about 1.5 hours of therapy a week, he is actually getting 30-minutes total.
Our plan is to get him into the school's preschool program next year so I won’t be there to see the sessions and carry the knowledge back home with me so it may become imperative that he gets all that he qualified for, but for now, he continues to progress and we are satisfied. We know that we are capable of fixing this if that changes.
I post things to Facebook or text friends and family occasionally with updates on Trey when he makes a big leap of progress, but I’ve never really posted the struggle it took to get that progress.
I hope that anyone who knows Trey who is taking the time to read or even skim this will truly understand that CAS doesn't define this precious boy, but it is a life-changer and a battle for our family. I hope anyone reading this who has a child with Childhood Apraxia of Speech will learn that you are not alone and yes, this is a fight, but it’s a fight you can win!
Trey today at 40-months