Intensive Speech Therapy sessions:
- 10/2/23 – Izzy cooperated and interacted which was wonderful! Homework for the week is animal noises 🐄 Notes: Talk to her through play, don’t test her; Repetition is KEY; Listen to nursery rhymes as they work both sides of the brain and are a great tool for learning; Continue signing ‘more’, ‘all done’, and ‘help’; Celebrate BIG when she mimics a sound!
- 10/9/23 – Izzy is amazing. She tried so hard today – listening and attempting to execute. She attempted “p” (though the ‘m’ sound comes out); she continues to use “m” correctly as in “mmmm” for more and “mmmm” for moo; she attempted “o” (no sound) by mimicking the ‘o’ motion with her finger around her mouth and also mimicked the hand gesture of ‘open’; she also quickly learned and used the sign for ‘please’. Homework is to continue practicing animal noises and also really focus on the word open. Izzy’s therapist said that it appears Izzy is ‘groping’ which means moving the mouth but nothing comes out – she stated that Izzy is trying so hard and knows what should be happening but it’s just not connecting. She’s assuming frustration will begin to take place.
- 10/16/23 – Izzy seems to benefit from cues of “use your mouth” and “watch my mouth” 👄 to mimic the gestures of making certain sounds. Homework is to practice vowels (open, in, oh no, on, eat, etc.) and the word “pop”. She has the p sound!!
- 10/23/23 – “Izzy you make my heart jump every Monday!” 🤗 her therapist exclaimed when Izzy surprised us with the b sound while playing with bubbles! Continuing to work on vowels, especially “o” as in open because we need to see her try to open her mouth to produce the noise. As her parents, our homework is vocal play – to repeat all the sounds she makes solely because repetition and practice are key. Izzy responds successfully when her utterances are imitated.
- 10/30/23 – Izzy began showing frustration today – she stayed quiet for most of the session, but did mimic a few mouth movements with Mom while looking in a mirror.
- 11/6/23 – Izzy’s developmental specialist joined today’s speech appointment to see how things were progressing. Izzy avoided a lot, but never shut down, which was great. The therapist stated that Izzy is on par with all other 22q kiddos she has worked with, but that her receptive language is extraordinary and not typically what you see.
On September 26, 2023 we added a new specialist – a speech pathologist. We were set to meet with our craniofacial team (plastics) in January (which consists of speech), but it was recommended to us from Help Me Grow to schedule this appointment sooner. Due to their concern of Izzy’s lack of language but complete comprehension, they thought maybe there was something that needed anatomically corrected.
As it turns out, they could possibly be right.
Summary of craniofacial visit: Although Izzy doesn’t have an exterior cleft palate which is common with 22q, there is a 90% chance with her diagnosis that she has a cleft palate under the roof of her mouth that we cannot see. This would be a structural abnormality keeping her from having the ability to talk. There are only 3 sounds that a human can make without typical palate function, so if this is her case, she will need palate surgery. Due to her history of nasal regurgitation, certain signs are pointing this way.
However, oral examination from her surgeon shows normal esophageal lining and, by touch, a palate that is intact with some movement, along with all extremities appearing normal.
So what’s the answer?
At this time, there is not enough of a speech range to determine if Izzy has Velopharyngeal insufficiency. Velopharyngeal insufficiency (VPI) occurs when the seal between your oral and nasal cavities doesn’t close completely. The condition is often associated with palate defects or genetic disorders. With VPI, air escapes through your nose during speech, causing a nasal sound and other speech issues.
The immediate plan is for “intensive speech therapy” to start once a week with close monitoring between speech pathologist and surgeon who work together in the craniofacial unit at Akron Children’s. After some time in speech therapy, Izzy will have x-rays taken to provide more information. As of right now, they are diagnosing her with “moderate to severe expressive language disorder”.
The reason on waiting for x-rays is to allow Izzy to build up her vocabulary (if possible). She needs to produce certain sounds in order for the doctors to be able to assess if her palate is in fact affecting her ability to speak. Typically, a child needs to be 3 years of age before they can produce enough words to be able to go through this x-ray study.
This x-ray study is more complicated than a normal x-ray because the palate is muscle, and the muscles could all be there but just not functioning the way they should be. For this type of study, a dye will be dropped into Izzy’s nose and then she will be asked to say words/make sounds. The x-ray will show how her palate is moving and if it is moving far enough back onto the posterior portion of her throat. This will then tell us whether or not Izzy’s palate is the reason she is not able to speak correctly, and it will also tell what specific type of palate surgery is needed, if any at all. Basically, it’s harder to figure out if the palate surgery is required when Izzy is only attempting two noises (mama and uh-uh).
We are scheduled to go back to see the surgeon in October 2024 but this could change depending on what speech says. Oh, and we have to lose the pacifier…… God speed to me.
Initial evaluation from the speech therapist:
Speech/Voice/Fluency: Izzy is only saying ‘mama’ and ‘uhuh’ consistently. She mouths ‘dada’ but does not use her voice. Izzy will also produce growling noises for ‘dog’ and ‘bear’ and a snort for ‘pig’. She signs “more”, “all done”, “drive”, “wheels”, and she will point to her mouth when she wants to eat or drink. She consistently shakes her head yes/no to answer questions and will point or shrug hands for other ‘wh’ questions. She will wave hi/bye but does not vocalize. Izzy loves songs and finger plays, and she will produce the hand motions to children’s song.
A child Izzy’s age (2) should be able to produce the phonemes /p, b, m, n, h, w/ and have speech that is at least 50% understandable to unfamiliar listeners in known contexts. Izzy’s speech production/articulation skills are severely limited at this time.
Izzy’s receptive and expressive language skills were evaluated using a combination of standardized testing, parent report, and direct observation. Results indicate an expressive language impairment when compared to same age peers.
Receptively, Izzy’s language skills appear to be age appropriate at this time:
She responds appropriately to simple commands or requests (let’s go, come here).
Izzy was still and listened for a full minute to a person naming pictures of familiar things.
She understands “where” questions. (Where is daddy? Where is the ball?)
Izzy listens and seems interested when someone talks to her.
She is able to complete simple tasks (give me five, show me your nose).
She can find items when asked (toy, something to wear or eat, etc.).
She continues to understand new words.
She can anticipate what is going to happen when familiar routines are announced (meal time, bath time).
Izzy complies with gestures when asked to say words associated with social routines (waves hi, bye).
She enjoys listening to nursery rhymes, finger plays, and songs.
She understands when you talk about a toy that is in another room.
She points to objects or pictures of objects when they are named.
Ability Score = 83
Percentile Rank = 14
Ability Score = 61
Percentile Rank = <1
Language Ability Score = 64
Percentile = 1
Treatment Plan: Treatment frequency is 1-3 sessions per week with retesting in 10-12 months to update test scores, recommendations, and therapy goals.
Izzy will imitate meaningful vocalizations during play routines with toys/common objects (i.e. boo, pop, ow, wee, uh-oh, beep-beep, meow, woof-woof, moo, etc.)
Izzy will increase number of vocalizations per session by 5 imitating/spontaneously producing different meaningful environmental, exclamatory, and/or animal sounds per session.
Izzy will imitate/spontaneously produce 5 different words/word approximations.
Izzy will increase expressive vocabulary to include 10 new words by labeling familiar/common objects and/or participating in songs/finger plays.
Izzy will request activity continuation and/or termination using vocalizations, communicative reaching, manual sign, word approximations, pointing/gestures 10 times per session.
Sterling and I feel confident we have the perfect speech therapist to work with Izzy. Besides the fact that she already has knowledge of 22q and extensive experience with palate issues, she could have passed us along to anyone else due to her large caseload. Instead, she advocated to work with her which shows us that she truly took an interest and wants to help. Plus, Izzy took to her almost immediately and allowed interaction, which doesn’t typically happen with our little stubborn princess 😙