Diagnosis of Trisomy 2 (in our case includes severe Apraxia (CAS), dysarthria, hearing loss, hypotonia, sensory integration, ASD, etc. Chronicles of his journey with communication (oldest videos = younger; age 2 years to present) for family and friends. Use of sign with speech at home; also has exposure to Deaf community and ASL and pidgin sign. Like many families, diagnosis of each has taken time. With newest genetics testing methods available to us when he was 5 (eg microarray) we were ultimately more informed medically yet have loved him all the same all the way!
Thanks for sharing this Liz. I found this through your blog and applaud you on all that you've already posted and researched for those who care about you or simply are in your same battle. Just so you know the entire Pixa family is praying you each and every day. We know you'll fight through this. Please let us know if you ever need anything at all. Love, thoughts, strength, and prayers to you, Steve, and Christopher.
Show you care come on and Celebrate the world Celebrate the World come on and celebrate the world yeaaaaaaaaaaaaah Ps: That kid dance better than me D:>
Notice how he's trying to say 'atah atah to fuh' while also reaching in his face to do so. Huge moment: after months of working on certain sounds multi-sensory/modal approach, this was one of the first where he combined the sounds. We may have another video of this, but of course these moments are hard to get on tape!
His receptive language skills are excellent; read to on a daily basis while pregnant and from birth. He also has had exposure to lots of experiences, people, diverse groups, diverse and culturally and linguistically rich experiences;
When he starts with 'Ahhhh ahh ahh' we firmly and lovingly tell him to "Use your words" -- and this can be in sign or verbal or combination (NOTE: he has had to work hard to get to a point. We wouldn't have been able to say this with results a year ago today. I would not say this to someone recently diagnosed with Apraxia who has not undergone oral motor treatment).
what we think: thought is influenced by experiences; language can come in a visual or verbal (or both) mode; language is both expressive and receptive in either mode; one who has severe CAS benefits from both visual and verbal for many reasons already previously cited.
His verbal words right now have less air; we noticed that he produces utterances at the end of a breath (take a full breath in, then out, then try saying a word at the end of that respiration out -- hard. But, common with stroke patients. This is where he is at 2 years 9 months
here you'll see his signs for cookie, off, bye.. verbally we aim for a word that is challenging, like cookie or a shorter version of it, and a word that he has mastered, like bye. We combine his easy and hard every session so that he has success with all attempts.
PS did we mention that our library of his books was over 300 at his 2 year bday and he his now approaching 3 so it has grown significantly? He often reads to self, to us, we read to him of course and he requests it nightly, sometimes reading for hours per his request of stories.
If he struggles with the word 'cookie' which he has mastered, we work with cues such as oral motor techniques along with disguising fun activities that have the word 'cookie' in it and aim at repetition of 'cookie' 3-5 times, little rest between intervals. Easiest in a song...
Cookie is a word he has mastered, but what is common with apraxia is inconsistency. So, depending on his level of tiredness, 'cookie' will be at the lowest level be mouthed with no sound, or an approximation (eg phonological process such as reduplication. For cookie that reduplication is 'tu tu'). And sometimes it is 'cookie'.
With these scripted sentences, he has started to use them independently and on own in other sentences. Often when we start with a script, it is like a warm up and he then will talk lots! Combo of Edy Strand, Easy Does it Apraxia, David Hammer, Velleman and teaching experience.
We model, he imitates. We model with sign. We used to model with sign plus oral motor activities, but he's gotten stronger and needs less of those cues. We do go back to oral motor when he struggles at words he's managed
.And, the hallmark of apraxia is consistency. So sometimes you will see this great effort, as in when he is trying to say Vicky (or tell them part of a sentence), and sometimes it just comes out so easily. Sometimes the initial sound is missing, sometimes it is the end; sometimes it is substituted with another sound. Consistency of sound production/errors is the key. This is why he practices speech everyday in a formal manner with objectives in mind.
He doesn't get frustrated in requests of verbal -- he is so eager to produce verbal. And, he's eager to do so for parents, friends, family. (he gets frustrated when he wants to do something else, eg go see a fountain now when not possible, these types of independence things, but not because of verbal requests)
(Lu)Cia, hi, didi, vicky posture, vahkee, avwat, ah, ah, Ciya, Jijaja, Hi, dahdah, you, guitar, thank you,...this clip shows the great effort he uses when communicating verbally. You can see it with trying to say Vicky.
Great Happy Birthday song, and has ones where he sings most of words and says all buddays and dear. Here, tired but can see his mouth and and hear him sing... His ASL teacher likes to say and sign 'congratulations on winning the door prize' so he anticipates it all the time now. He loves to sign and say prize...
new bike! Likes to sing "na" in Na na na na part of High School Musical 2 song, You are the Music in Me. Will also anticipate lyrics. Here just a quick clip of one 'na' -- hard to capture on video due to light, memory full on camera, etc
We gradually worked up to combining the 's' and the 't' with the 'i' vowel. In this example, it is a drill type of practice. We aim for 30 minutes per day of drill in a play fashion, focusing on 3-5 words during the session. And, with those words, we aim at producing repetitions. Here you can see him repeating the word 'sit' roughly 5 times. We record his progress via video and logbook. He has come so far! Just look at his older clips...
Here, we have been working on the word 'sit' for about 6 months; we started with him signing the 's' portion of the word along with feeling the 's' air come out of his mouth with whistles, toothbrushes, straws.
During this part of the class, kids go and sit by the mirror and wait for their name to be called for an individual skill demonstration. Here, he waited so patiently and was proud when his name was called. Check out the joyful twisting of his torso as he walked up to the teacher.
blowing in water = warm up for speech, signs: up, all done, more, yes, verbal op(open), verbal please without sign (signed please for one year, verbal eh (yes), sign go, sign bye
Here, Christopher just saw an AMAZING drum corp presentation at the nationals event held at the Rose Bowl. He signed 'more' anytime they stopped performing. At the very end, he was so excited, signing non stop words of "more, please, go, start, thank you, Christopher...." just SO excited! Lots of sounds started emerging with these signs. It is so powerful to know that he CAN communicate!!!
