1 year post decannulation/surgery report: still not speech

SeamusMalcolm · #1 10-19-2008, 08:12 PM

I am so happy Malcolm is a healthy, happy 3 1/2 year old.

He has a long way to go to catch up developmentally. He is stuck at about 18 months developmentally.

Fortunately, his premature lung problems cleared up almost immediately after Dr. Cotton's single-stage laryngotracheal reconstructions. We have a lot to be thankful for.

Still no speech except for the occassional "ma" which is milk, not Mama. Sometimes he babbles "d" sounds. He has about 25 signs or more thanks to the "Signing Time" video. I love that series.

I should mention he was a 26-week preemie so delays are expected, I guess I just expected more playing with the sounds of language to start happening faster than 1 year +. Mind you he had no Passy Muir valve or air leak to "practice" befor decannulation.

What are your experiences?

drct1245 · #2 10-20-2008, 01:05 AM

Ayden had the air leak long before decan and then used a PMV, but didn't have any "word" before decan. Have you had his hearing checked recently? When Ayden's other "ears" aren't in, he is quite quiet and then he screams extra loud to compensate. Do you have a SLP? What do they think? Ayden has taken off on vocalizations since decan. He can say all his vowels, except for U. He has L,M,N,R down for consonants too. We have only been decanned since early August and this is what he has done since then. Before the trach was out, all he said was ahhhh.
I hope you can find someone to help you... our preemies are very difficult to predict. They have their own schedule for everything!!

SeamusMalcolm · #3 10-20-2008, 06:20 AM

Thank you for writing back!

Part of the reason it is frustrating is I believe some of his more severe behaviors (head-banging) are due to his own frustration in not being able to communicate. I feel we could work on this so much more effectively. However having an 18 month adjusted age, he is not exactly logical.

We worked with an SLP at home through Early Intervention until May. He started PreK Disability and some SLP there March-May. When we moved to Florida (from Georgia - about 50 miles away) we had an interruption in services. We started with school in August but don't think it's enough. I think we'll have to seek out extra speech here.

Unfortunately we were refused Medicaid in FL even though he's disabled. Huh?

As I mentioned before, he has some purposeful babble but it's not steady or regular. Mostly Ma and Ba and Da.

JWorthington · #4 10-20-2008, 08:24 AM

Sam has been tolerating his pmv all day since July and we are still only hearing the same sounds you are getting. The SLP said that Sam needs to remake the neurological connections to form speech. sam wasn't a preemie and did have some speech before his trach so we are hoping he will one day be able to speak. at the moment he signs well and types things too. He has got a laptop which has some limited speech software on it and since we have opened these channels there has been a lot less of the behavioural stuff associated with frustration at not being able to make himself understood.
I hope it all falls into place for Malcolm soon

Julie xx

debvec · #5 10-20-2008, 12:16 PM

Have you tried using signs and gestures? Amanda was a late talker and didn't use purposeful speech to communicate until she was around 5 but she was a master at using signs we either taught her or she made up to get her point and needs across. I believe that helped so much in keeping her frustration level down. Just a thought, you may already be doing this, but if he is at 18 months ish developmentally he might easily grasp sign to communicate.

TommysDad · #6 10-20-2008, 01:23 PM

I'll keep it short and simple. If Malcolm likes cause & effect toys, it might be worth you searching for the AAC Evaluation and AAC Device thread.

If it's something you think Malcolm might need, feel free to contact me if you have any specific questions.

It wasn't the easiest thing in the world getting Tommy's his AAC Eval & Device, but it sure was worth it 'cause Tommy USED TO BE a head banger, too!
~Maggie Boyce

WeAdoptKids · #7 10-20-2008, 02:01 PM

Maggie said it best, our kids need a way to talk even without words. This causes tons of other issues and could be some of the reasons you are not seeing growth in other areas. One of ous sons just has poor speech and it has cause major behavior issues. It is very frustrating for us because his speech is slow going but he is verbal and you can understand him. I would really focus on this area.

Roberta

SeamusMalcolm · #8 10-20-2008, 04:03 PM

Quote:

Originally Posted by TommysDad

I'll keep it short and simple. If Malcolm likes cause & effect toys, it might be worth you searching for the AAC Evaluation and AAC Device thread.

If it's something you think Malcolm might need, feel free to contact me if you have any specific questions.

It wasn't the easiest thing in the world getting Tommy's his AAC Eval & Device, but it sure was worth it 'cause Tommy USED TO BE a head banger, too!
~Maggie Boyce

I'll give it a search. Thank you for the clue. He's okay with cause and effect, but tends to obsess on Thomas the Train.

Hope · #9 10-20-2008, 04:16 PM

Shelby wasn't a micro-preemie, she was about 5 weeks early and 4.5 lbs, and she had other issues that might affect speech. But since her decann in March, her speech as well is slow-going. Her last eval put her at 1 year 9 mos (she just turned 3). It is frustrating and I'm seeing that frustration in her behavior, nothing severe, but melt-downs and short-tempered. I asked her ST about what Maggie mentioned, looking at ACC devices, but she said that "Shelby will be a verbal communicator one day" and she didn't want to go that route. Which I wonder about because Shelby needs to be able to communicate *now*. I'll wait a while longer, I guess, before pushing for something more.

Hope

SeamusMalcolm · #10 10-20-2008, 05:38 PM

Meanwhile Malcolm whacks his head on the wall ...