Wells’ Speech Part 2

Wells’ Speech Part 2

Wells’ speech therapist’s contract was not being renewed by the Help Me Grow organization that Wells receives services. We were devastated to hear this because Wells had gotten comfortable with her. At our last session, she gave me a packet of information about a motor speech disability called, Apraxia. After working with Wells for six months, it was her professional opinion that I look into this with his next speech therapist. Huh? – I thought he was just a little behind…

Before meeting with his new therapist, I Googled Childhood Apraxia of Speech. I learned that it’s an uncommon disorder where Wells would have difficulty making accurate motor movements when speaking. In CAS, the brain struggles to develop plans for speech movement. With this disorder, the speech muscles aren’t weak, they just don’t perform normally because the brain has difficulty directing the movements. CAS is treated with speech therapy and the Help Me Grow program set Wells up with a speech therapist who has advanced training and expertise in Apraxia.

Jody, his new speech therapist, met with us to give Wells an evaluation. She heard the dropping of consonants, the inconsistency of speech patterns, and saw his frustration when we couldn’t understand what he was trying to say. She was quick to inform us that while CAS couldn’t be diagnosed until age four, Wells most certainly has a motor speech delay – something he won’t just grow out of. Therapy is the only treatment for CAS and we go two/three times a week.

When we repeat words how Wells pronounces them, back to him for example, “ickey” for Mickey, he tells us we’re saying it wrong. He knows how words are supposed to sound, he just can’t make his mouth do it. It’s heartbreaking to see him struggle. To speak correctly, Wells’ brain has to learn how to make plans that tell his speech muscles how to move his lips, jaw and tongue in ways that result in accurate sounds with normal speed and rhythm. He can make the “m” sound however, he cannot connect it so it sounds like “mmm” space “icky”.

In six months, Wells has mastered isolated consonant sounds “h”, “m”, “s”, “p”, “b”, “f”, “w”, and “sh” at the beginning of words. We are practicing those sounds with syllable combinations ie. “fa” and “moo”. Kinesthetic movements help Wells remember how to correctly manipulate his mouth. Right now, we are working on the word, “open”. He does not naturally put the “p” sound in the middle of the word. We practice by making a big, “o” with our arms and then move our hand under our chin like we’re blowing a kiss. When the words are broken down, Wells has more success.

Wells will no longer receive paid services through the Help Me Grow organization when he turns three. At three years old, children can receive disability services through their public school system (pre-k). We have decided to not enroll Wells in the pre-k program through our district. The school only offers a half-day service, four days out of the week and that does not work with our work schedules. To make sure Wells is supported with his speech needs, we will continue to see Jody and charge our health insurance for the visits.

Speech therapy at two years old : Wells often falls asleep in the car before we get to speech therapy. He runs down the hallway like Sonic, and counts the stairs when we leave. When he wears snow or rain boots, they often get in his way during floor activities so they usually get thrown off. Wells will randomly get into a yoga pose. If an animal is brought up, like a frog or bunny, he’ll act it out. It’s fun and I’m always proud of him.

Speech Delay

Speech Delay

A cognitive speech delay refers to the condition of children whose speech function is significantly below the expected average for their age.

Wells was such a ham at the pediatricians office for his 18 month appointment. He proudly walked onto the scale, waved at every nurse in the hallway, and peeked his head into another room to say, “hi” to the doctor. As we waited for our visit, I was given a behavior and intellect survey. I quickly became aware of what the average 18 month old could do and what my son could not. “Does your child put two words together to make a short phrase?” We clap when Wells says half of a word correctly. “Does your child say 50+ words?” Does “eee” count as a word? I looked over at Wells, sitting with his ankles crossed on the table, and my eyes begin to well.

His doctor reassured me that because he’s male and has a talkative older sister, we shouldn’t be worried. “It just hasn’t clicked for him yet.” I asked about a speech therapist however, that was not an option for Wells because he had no other signs of delayed development. She said, “He’s content; it’ll come. Model speech. Incorporate more sign language and give him choices.” I was told at his two year appointment we will reevaluate, which put a timeline on us, and that pressure was heavy.

Wells’ hearing has been checked. When he was born he didn’t pass his first hearing exam in the hospital; he had womb fluid in his ears. Before we left the hospital, Wells passed his hearing test. At eighteen months, Wells understands what we ask of him; cognitively, he is fine. Wells has great social skills; he plays with his sister and other children. Wells might not speak words yet but he communicates through pointing, body language, sign language, and grunts. Every adult is, “mama” right now (which absolutely destroys Chris because he still doesn’t say, “dada”). When Wells would call Chris, “mama” Chris would respond, “No. Say, ‘dada. Da-da’”. After doing some research, we learned saying, “no” to his vocalizations could actually hinder him from attempting to speak.

Following some advice from my best friend, Lindsey, I began following some vocal pathologists and speech therapists on social media. Watching their stories and reading their posts made me feel like we weren’t alone with Wells’ speech delay. A particular post caught my eye that read, Early Intervention; not “wait” and see, check and see. The post was about support for children 18-36 months old with cognitive delays. Our pediatrician said that insurance would not cover speech therapy until he turned two however, this program was state funded as long as the child qualified. I decided to fill out the questionnaire and I received a phone call within a week to schedule a virtual evaluation.

For the virtual evaluation, Millie got doughnuts with Mawmaw so Chris and my full attention could be on Wells. Signed into the Zoom meet was the Help Me Grow service coordinator, OT (occupational therapist), and a speech pathologist. Chris held the phone and I played on the floor with Wells with the toys that HMG recommended; blocks, Little People, books, Melissa and Doug knob puzzles, balls, etc. The therapists asked questions about his daily routine and his skills. We were all so impressed with how much Wells was showing off. He acknowledged the specialists, he stacked blocks 12 high, he identified colors and body parts, he jumped like a frog, and made animal sounds!

The specialists were using the Bell Curve to determine if he would qualify for state-funded therapy. He scored extremely high in the motor skills and comprehension categories. Once his speech score was included, it dropped his score significantly but not enough to qualify for state funded help. I was devastated. Without hesitation, I began advocating for Wells and the help that I knew he needed. I mentioned that we had taken advice from a speech therapist that I work with and that we were not seeing improvement in his speech. I reiterated the frustration we feel, especially Wells, when he can’t communicate his needs. Thankfully, the speech pathologist on the video conference heard me. She said, “My clinical opinion trumps the Bell Curve score. It is my opinion that Wells needs intervention in expressive speech and I will take him on my case load.”

The next step was to meet with HMG to compose an IFSP (Individual Family Service Plan). An IFSP is provided based on the concerns of the family and the child’s needs. The plan must include: an assessment of a child’s present levels of development, a statement of goals, support services that will be put in place to achieve those goals, date services will begin, and the identification of the service coordinator. A re-evaluation is done every 6 months. Wells’ goals were to expand his expressive vocabulary and to use family names ie. Mia, Dada, Papa etc.

We were able to schedule in-home meetings, twice a month. Wells’ speech therapist’s name is Katie and she is extremely kind. We meet around Wells’ nap time so he’s not been in the best of moods however, she lets him draw in her planner and he loves that. She listens to Wells while he plays and gives Chris and I ways to better communicate with him. Our first assignment was, “imitation”; getting Wells to copy the faces we made and then asking him to repeat a word. We also were encouraged to sing with him and let him fill in the words. Katie also told us to stop saying, “Wells say …” and since we’ve stopped putting him on the spot, he’s picked up more words. Because Wells is so active and advanced in his motor skills, Ms. Katie recommend we add repetitive words to movement like, “One, two, three, jump!” Verbal routines and elimination ie. “ready, set, go” multiple times then “ready, set” and he should fill in the blank with “go”. After a month of speech therapy, Wells seems more confident in trying new words.

Millie and Wells met a little girl while watching the penguins swim at the Newport Aquarium. Millie introduced herself right away, full name and age. The little girl introduced herself. Wells puts both hands on his chest and said, “Wells”. I got tears in my eyes; I was so proud of him. He knew what the girls were saying and without being prompted, he joined the conversation. He also has started babbling. It’s not often but it is encouraging because he is using his tongue, “dee di do do da da”. When he uses his little voice he has the sweetest smile on his face – he knows it pleases us.

Here is a running list of Wells’ said words (not all consonants are there but he attempts) :

  • Mama
  • Mawmaw
  • Gam
  • Eat
  • Couch
  • Hi
  • Bye
  • Bean
  • Corn
  • Drink
  • Wells
  • Bath
  • Mickey
  • Blue
  • Red
  • Yellow
  • Pink
  • Bluey
  • One, Two, Three, Four, Five
  • Green
  • Eyes
  • Teeth
  • Nose
  • Mouth
  • Toes
  • Read
  • Run
  • Mine
  • No
  • Beep
  • Warm
  • Cold
  • Hot
  • Home
  • Mouse
  • Up
  • Down
  • Out
  • Yeah
  • Clean
  • Swing
  • Please
  • Slide
  • Phone
  • Crying
  • Quack
  • Meow
  • Car
  • Yum
  • Cream
  • Candy
  • Ice
  • Ready

Everyone has an opinion on Wells’ delay and the resources we are giving him. I’ve heard, “Once he starts talking you won’t get him to shut up!” This comment was not helpful. When we are dealing with Wells completely melting down when he can’t communicate his needs, his verbal skills when he’s older does not help him now. “Boys are late talkers, he’s fine.” My son is more than fine. He is beautiful, healthy, and intelligent. He is getting help for a diagnosed delay. “It could be worse.” Chris and I are very blessed and we are aware that Wells’ speech delay is a mild impairment compared to other children who have more severe delays. We also know that this is our reality and we are trying our best to provide Wells with the best possible resources to be successful with speech and will continue to aide him with any other aspect of life.