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View Full Version : 1 year post decannulation/surgery report: still not speech


SeamusMalcolm
10-19-2008, 09:12 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
10-20-2008, 02:05 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
10-20-2008, 07:20 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
10-20-2008, 09:24 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:hug:

Julie xx

debvec
10-20-2008, 01:16 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
10-20-2008, 02:23 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
10-20-2008, 03:01 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
10-20-2008, 05:03 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

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
10-20-2008, 05:16 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
10-20-2008, 06:38 PM
Meanwhile Malcolm whacks his head on the wall ...

Hope
10-20-2008, 08:17 PM
Like Maggie mentioned, maybe a look at an ACC eval wouldn't hurt, if you can find someone to do it. I know it's hard to see your little one struggle.
Hope

TommysDad
10-20-2008, 08:20 PM
I totally understand this 'wait and see if they can do it on their own' mentality! We did the same thing for a long time with the decision for a g-tube (to have or to not have).

~Maggie

Jack'smom
10-21-2008, 10:48 AM
I would suggest going very hard core on the signing!!! If Malcolm has 25 signs already it seems like this is a method that may work for him. Jackson is 18months old and I can tell he has just started to really appreciate signing to communicate, I can see how it reduces tantrums. And I see the tantrums in his older toddler friends and think to myself "if only their parents taught them sign!". I would love it if Jackson was verbal but with signs he can communicate better than other toddlers.

We are working hard to teach him the signs for things he usually wants - specific foods, toys etc. so he can ask instead of scream. Jackson can master the signs a lot faster than we can learn them and I feel like we are failing him by our slow pace. So I am going to use this post to encourage myself to step it up along with you. Good luck! :)

twintotwin
10-21-2008, 10:56 AM
Hello J!! Welcome back.
I've been keeping up on your email updates...
I guess you've learned that FL is not the friendliest place for children with disabilities.
I'm so pleased to hear that Malcolm is doing so well. My twins are completely different so I can't really help you.

Don't be a stranger! :hug:

Kerry

hcs_mom
10-21-2008, 01:03 PM
Have you considered contacting Dr. Cotton's office for advice? They may have some helpful hints as well.

Some exercies we used to get Hannah to "understand" that she could use her mouth, make noise, etc.

Blow bubbles, play a harmonica, blow bubbles in water using a straw, then add some "humming" (if that makes sense) as you are blowing bubbles with the straw,

We also used flash cards with words and pictures. We would encourage Hannah to sound out every letter in the word separately. We did that for a LONG time before she started talking.

Also, we found that as we tried to get her to pick up speech, if we taught her a new sign, we paired it with the word and she was much more interested in learning something "new" vs. learning a word for which she already had a sign.

Jennie

SeamusMalcolm
10-21-2008, 02:52 PM
I would suggest going very hard core on the signing!!! If Malcolm has 25 signs already it seems like this is a method that may work for him. Jackson is 18months old and I can tell he has just started to really appreciate signing to communicate, I can see how it reduces tantrums. And I see the tantrums in his older toddler friends and think to myself "if only their parents taught them sign!". I would love it if Jackson was verbal but with signs he can communicate better than other toddlers.

We are working hard to teach him the signs for things he usually wants - specific foods, toys etc. so he can ask instead of scream. Jackson can master the signs a lot faster than we can learn them and I feel like we are failing him by our slow pace. So I am going to use this post to encourage myself to step it up along with you. Good luck! :)


Malcolm learns signs from me, but he absolutely loves the Signing Time series because there's so much music in it and funny noises. It's not dull like most kids' videos. Sometimes he comes out with a sign from the videos that we've never done - like grapes. I hadn't bought grapes over the winter (or for some time) because they weren't in season. Then one day we were at the grocery store, grapes were on sale so I started looking for a good bag, and voila! he was signing "grapes"!

They come separately, in packs of 3 or whole series (13 for the first season). I think they're cheaper through Amazon. I just love them. They are life savers. www.signingtime.com

TommysDad
10-21-2008, 06:21 PM
We LOVE Signing Time Videos, too!:inlove: :inlove:

I love Jennie's suggestion of calling ENT to see if they have any ideas of why there is still delayed speech, and how you can work at home to help make progress. I know Cincinnati is starting a voice clinic with Dr. Alessandro de Alarcon once he comes back after finishing his degree. He's been in the OR with Dr. Cotton when Tommy's gone under. He seems very nice!

But in the mean time, if you need help building your own sign language vocabulary (as well as your son's), our Developmental Therapist for the Hearing Impaired (DTH or AKAs HDT) recommended we purchase The Comprehensive Signed English Dictionary. We did, and it's been a great resource for us! We would recommend it, too!:D

SeamusMalcolm
10-21-2008, 07:40 PM
Have you considered contacting Dr. Cotton's office for advice? They may have some helpful hints as well.

Some exercies we used to get Hannah to "understand" that she could use her mouth, make noise, etc.

Blow bubbles, play a harmonica, blow bubbles in water using a straw, then add some "humming" (if that makes sense) as you are blowing bubbles with the straw,

We also used flash cards with words and pictures. We would encourage Hannah to sound out every letter in the word separately. We did that for a LONG time before she started talking.

Also, we found that as we tried to get her to pick up speech, if we taught her a new sign, we paired it with the word and she was much more interested in learning something "new" vs. learning a word for which she already had a sign.

Jennie


Malcolm is working on breathing out "on command" - ie blow bubbles, a whistle, etc. He doesn't quite get it. I've been trying to get him blow bubbles in the tub but to no avail. He puts his face in the water though!

I will try calling. Should I try asking for Dr. Cotton directly or should I call his NP?

Yay, Signing Time! I think we should do a letter writing campaign to get some kids with trachs on their videos/show!

SeamusMalcolm
10-21-2008, 07:44 PM
Hello J!! Welcome back.
I've been keeping up on your email updates...
I guess you've learned that FL is not the friendliest place for children with disabilities.
I'm so pleased to hear that Malcolm is doing so well. My twins are completely different so I can't really help you.

Don't be a stranger! :hug:

Kerry

yup! We lost Medicaid. Didn't anticipate that one! Glad you've been getting the emails. Life has been a bit crazy, but I'm starting to get it under control.

Can someone suggest a better state? Arizona? Connecticut? Ohio?

hcs_mom
10-21-2008, 09:25 PM
I guess just call and leave a message for one of the PNPs. Maybe even ask them if they could connect you with one of our ST's by email? If you don't get satisfaction, you might email Dr. Cotton personally. Are you due back for an MLB anytime soon? Maybe they could coordinate an appt in the voice clinic for you? Or maybe even just a session with one of the ST's here?

One other trick that we used to get Hannah to push air out of her mouth...hold a tissue in front of the child's face and have them blow it away.

Good luck.
Jennie