Wednesday, July 22, 2009

Looking for Guidance on "This"

I've been debating sometime on whether or not to write about "this", but after having many sleepless nights thinking about "this", I thought who to better get advice from than the moms and dads who are there or who have been there. I've thought and thought about ways to say "this", ways to discuss "this" without sounding offensive to anyone on Aiden's team. We genuinely like our therapists and truly believe they have the same long term goal for Aiden as we do. It's a long journey to reach that ultimate goal, and I, as Aiden's main therapist, need to make sure we, along with Aiden's therapists, are a right fit as a team to reach all our goals ... for Aiden's sake.

I want to also say that we do believe Aiden is progressing along wonderfully. So this isn't about "our son not keeping up with the Jones'" type of post. I whole heartily believe that every child (hearing or not) is different and will get where they need to be when they're ready to get there with the right guidance. Would I like Aiden to be chattering more like others his age? Of course. But I know Aiden is Aiden and we are VERY happy with his progress.

What "this" comes down to is we don't feel we're getting the level of service we're used to when it comes to Aiden's therapy. Just some of the things I've debated and questioned over and over in my mind:

"Are we getting what is typical of Auditory Verbal Therapy and TOD services?"
"Should there be different kinds of homework after each of our sessions?"
"Should we be learning new activities week to week to take home and work with Aiden on?"
"Should our TOD (who is very supportive of our AV approach) and our AVT be in weekly or monthly contact to discuss Aiden's progress/lack of progress to help plan the next weeks/months therapy sessions?"

These are just a few things that go through my mind. The main thing is I do not feel comfortable right now, yet maybe it's me who needs to adjust?!? Maybe it's me who doesn't understand that what we're doing in therapy is typical. I don't know. What we get now, is somewhat different than what we received in Texas though. I always walked away from therapy with new ideas/activities/games, new books to read and songs to sing that all correlated with the Learning to Listen sounds/goal we were working toward, and most importantly, I walked away with a warm and fuzzy feeling of a nice productive day and felt good with the notes I went home with.

I know these are concerns that I have to bring up and discuss with my therapists. I believe that, together as a team, we have to build a foundation of what I expect of them, what they expect of me and if those expectations are not met, then be able to discuss our concerns openly. I do firmly believe that not every therapist is a fit for every student/parent ... and that's okay! But, when it comes to teaching my deaf child how to speak and listen, I strongly believe it is very important to have a solid, comfortable relationship with Aiden's therapists, especially when it's one that could last for years.

I just don't feel like I'm getting the "whole package". I admit, I'm the type of person who needs to understand everything, the type who has the need to always feel a step ahead. I not only want to understand what we're doing NOW, but I want to understand what's next, and then even what's after that. I want to see at least a dimness at the end of tunnel NOW, even though I know that bright light may be years away, just for my own necessity ... for my own warm and fuzzies.

So again, what I'm looking for is guidance from other CI/HOH parents/therapists and what happens in your therapies. I was going to give a synopsis of what we do in therapy, but decided against it. So my questions to you are:
  • What does a typical therapy session "look" like?
  • Do you focus on themed units for x amount of week(s) with activities/games to play, and language to incorporate?
  • Does your TOD and AV (or any private therapist) work together on a themed unit to reach a common short term goal?
  • Do you leave with a certain "something" to focus on for the next week or ? (homework)
  • Do you leave with something new to incorporate into everyday routines?
Thank you in advance for all comments and/or suggestions! Any guidance is greatly appreciated!


Bright Family said...

Waiting for the responses!

We have a lovely SLP, but with no experience. We HAVE to work extra hard at home because I know he is not getting the quality of services that are needed.

Tayten has had his CIs for 2 years and our distant AVT and our SLP have yet to get that not a bit ridiculous?!

The SLP has many tools, but I am not quite sure she knows how to use those tools appropriately or as well as an AVT.

It is frustrating because we have no otehr options...well, besides moving. Also, if he wasn't progressing, we wouldn't be here.

Thanks for posting. I am really interested in what others have to say!

Kat said...

Hey Tammy,

I know that we talk quite often on the phone for typically a couple of hours at a time. However, if you want to have a specific conversation about what our AVT sessions look like, I'm more than happy to chat. You know that I think the world of our AVT and think she is doing a great job with Thomas. I'm happy to write something out as well...although that could be a really long post. Wanna chat tomorrow evening or Tuesday, or this weekend?

leah said...

We know we aren't getting the type of therapy sessions that other deaf/hoh kids get (no AVT in our area at all), so we do a LOT of supplementation at home. It makes me want to become an AVT to provide these services (but our area is so very small that there aren't enough deaf/hoh kids to support it)!

Goodness, I hope you have a good solution soon. I figured that living in Maryland would provide you with a ton of resources, being so close to D.C. The AVT services in Texas seem amazing (from reading other people's blogs)!

Kel said...

To be completely honest, I ask myself the same questions sometimes of our AVT. Danny is not as far along as many of the other kiddos around his activation date, and as thrilled as I am with his progress, I question sometimes - it's only natural!

Our AVT is not very structured, let's put it that way. We do have themed units, and she often brings in handouts and little "cheat sheets" about what we are focusing on. We begin the sessions (which are weekly) discussing what Danny has been doing, and she also puts a focus on US as parents too - how we are feeling, what we're thinking, etc.

From there, it goes into play time with Danny, and at this age (16 months) she takes a very "you lead, I follow" approach. She suggests activities and ways of playing with toys we have, but if he wants to go do xyz, she goes and does xyz with him, demonstrating ways to incorporate language and giving us little "crib notes" on the side.

We don't have a lot of homework at this point, partially because of his age and where he's at in his hearing journey. She suggests a few things to focus on but doesn't give us any specific "you should do x, y, and z, to come out with outcome A."

I hope that helps you some! I would say, if you are having these questions and concerns - bring it up with your therapists. Just say you would like more of this, or are wondering if that would work, a benign way of feeling them out.

Good luck!!!

Val said...

I've been fortunate to have worked with many AVTs and a highly skilled SLP. Yes, you should leave with tons of ideas. The therapist's ideas should be so clear, that it sparks your own ideas of how to accomplish the goals. You should know exactly why you are doing things so that you know what responses you are looking for.
example: homework may be "introduce more descriptors...more adjectives" Okay, that's kinda general so you need to find out a more specific goal. Is the goal to just introduce new words or does he/she mean to use adjectives so the child can guess what your describing w/out naming the object, or does he/she mean let them use adjectives for them to describe? What's the goal here? or are they trying to get the child to use a certain number of elements like "find the sock that is red, long and fuzzy"?? If you get a clear idea of what the specific goal is, you can change it around and make it work for you later at home. If it's for the reason of guessing the object, you can do that while Aiden plays with his cars..."it's red, it's loud,it used to put out fires" in hopes the child guesses firetruck....for example. I would say the biggest thing is to leave with your goals. Tell them you don't fully understand the goal and let them give you examples of ways to do that at home...with your stuff, not their therapy items. A good AVt or SLP or TOD for that matter are so FULL of ideas, they'll have absolutely no problem making themselves clear. SORRY SO LONG, I COULD GO ON AND ON AND ON

Renae said...

We lucked out by getting a great SLP (Beth) and deaf educator (Mandy) who work AWESOME as a team. I can say that because I now have comparison. We started with them last August. They came to most visits together. Beth started a "family work board" and it lists our "homework" on it every week. Common phrases we are to work on...different games we're to play. Pretty much everything we talked about. I can take a picture and post it to my blog if you'd like!! It is a constant reminder of what we're to be doing. We leave it there until Briggs has mastered it and they can sign him off. So yes, we ALWAYS have goals!! Beth also started a "folder" and it has lists in there of word approximations, common phrases, etc. etc. and she puts the date he does it and that folder is veiwed by everyone coming in for a visit so everyone is on the same page.

Recently Beth who we started with in August, we LOVE, and who has a TON of experience with C.I. kids left LPS (Lincoln Public Schools) to work with an independent clinic. We now have her come to our house once a week, and to Briggs' daycare once a week (2 visits per week every week). We have to pay for these services now and it SO worth it!! We can definitely tell the difference between "free" and "paid for" visits.

Our deaf educator Mandy is the pre-school teacher at the hearing impaired school and teaches C.I. and aided kids every day so she has a lot of experience too. She will be teaching pre-school full time this year so we will be loosing her for Briggs but gaining her for Elli (Elli is going to be a hearing peer model in the H.I. preschool class this fall and she'll have Mandy as her teacher). Mandy too ALWAYS has "homework" for us and everything is coordinated amongst them.

So we have recently been assigned a new SLP and deaf educator. Again, ones who have experience with C.I. kids but you can tell that they're much more laxed on visits (because it's a free service and not their primary job)and want to come every other week, which I'm demanding every week. Everyone emails with each other. I always get an email from Beth and Mandy after they leave his daycare for a visit to give me an update and what they worked on and what he did.

I'd love to chat over the phone if you have more questions!! My two biggest suggestions would be to start the family work board and to get a folder going!

tammy said...

THANK YOU ALL for your input, suggestions, and support! Very helpful!!

Renae - I would LOVE to see a picture of the family work board you all use! I'll keep checking your blog for it!

Renae said...

I will take a picture this weekend and post it on Monday! I'll explain the board and what she does. I'm a VERY organized person and she is too so she is a great fit for us! I'll email you so that I can explain the board and that way you'll too have my email address in case you have questions. Have a great weekend and I'll email you Monday!