Does anyone not use the ST services

[principe]

Once again I'm having this dilemma with ST. I can't recall but it has probably been 5 months that Aldo has been working with this speech therapist. He seems knowledgable about ST in general. He has been working with Aldo on eating safely (he eats by mouth). He had been guiding me on what to feed and how to feed Aldo. But if Aldo didn't want the food I was giving him he would just refuse to eat it, therefore I had to give him whethever other food he asked me for (mostly Cheerios). So forget about following the advice his speech therapy gave me. Aldo just didn't want such food at the time. Aldo couldn't figure out how to eat different consistencies. He didn't know whether he had to chew or swallow. He was basically swallowing pretty much everything. Fast forward, with my family just feeding him whatever they were eating (because Aldo would ask them for their food) he slowly started just eating all kinds of solids. I watched that he was eating safely and he seemed to be ok but if he looked like he was choking I just told them to feed him smaller pieces or just stop feeding him. I don't allow them to give him liquids unless they are thickened otherwise he gulps. So lately, all of a sudden, Aldo just started eating everything. He's chewing well and then swallows. Now I'm thinking he wasn't chewing before because he probably needed more of his molars to come out or his now bigger and stronger.

Now I just think he needs a swallow test so that I can feel safe about feeding him all consistencies. He has a swallow test scheduled for next month after his bronch that's coming up. Since Aldo is now eating everything the speech therapist wants to work on speech now and here's my dilemma. The speech therapist keeps mentioning the PMV to practice speech with Aldo. Aldo is not behind developmentally. I feel that maybe some of these therapists expect to see a trach child that's developmentally behind and they base their therapy sessions on a developmentally behind child with a trach. That's my impression but I could be wrong. The speech therapist is telling me to work with Aldo on different activities that he doesn't master yet but he's not mentioning if I should involve sign language or any oral motor skills. Just something to help him with communication. But what I really want is not communication but practice with sounds, something that will help Aldo talk. Aldo communicates very well. He's not behind in communication. He only needs to talk but of course, because of the trach he can't say words out loud. I know he knows words because he understands words I tell him. There's two words you can hear coming out of him "agua (water)" and "mama (mom)". He learned agua on his own and I thought him mama. But the speech therapist can't seem to teach him any words withouth a PMV. Plus he has only thought him one sign in ASL. Aldo makes a bunch of sounds and babbles with the trach. I feel like he's learning by hearing me and my family at home than with ST. I basically feel that the ST he's getting is not working for Aldo. Does anyone here do not have ST for their child? And how is that going with speech, sign language and communication in general.

I have a million things to do with my kid and i not want to waste time on therapy that doesn't seem to be working. I feel that with a PMV I can teach Aldo to talk myself. Aldo doesn't master very few skills but I'm not worry because he's doing so many new things everyday and whatever he didn't master yesterday he masters later, I see. But therapist have set up milestones and if they don't see them when they are giving the therapy they feel the child is behind. So sorry for the long post. Thanks.

[Caleb'sMom]

I'd say that if you aren't on board with the speech therapy there is no point in having it since so much of the therapy depends on the parents and therapists being on the same page.

you are the parent so it's up to you what is best for your child.

you could always find another speech therapist who is more on board with what you want OR an occupational therapist who specilizes in oral motor stuff if you think that would be beneficial.

you could also have a very frank sit down discussion with the current speech therapist voicing your concerns, what goals you have etc.

if it's not working for you and your son then just stop the ST and see how it goes.

[IzzyB]

Does the speech therapist not go over the goals with you every 6 months? Mine sits down with me and says what goals have been met and what additional goals are being added and if there is anything that I would like done. We always work together on my LOs plan of care. All of my therapists work the same way. I know mine do not assume anything, because most of mine only work with trach kids once in awhile. For PT we were her first trach child, it was funny when the HME fell off she would freak out thinking something bad just happened. They even talk about how each child is different and you have to work with them differently. I personally would get a different ST, just so you have the help in case you get stuck somewhere with teaching on your own. I know my therapist are great with answering questions about my concerns and giving me tips. Even with my daughter who they don't work with, but they always answer my questions about her too.

[suzanne2545]

Parker is now quite fluent and verbal. There are definitely sounds he can't make and he is often a bit breathless but for the most part I'd say he falls in the "normal" category but for someone who knows what they are listening to, if that makes sense.

We, too, are debating what to do. Parker is taken out of the classroom for speech and personally at this point I would rather he not be as I want his current focus to be on early reading and math skills. Bless his teacher as she has re-arranged her entire class schedule so that she always gets one on one math and reading with the two kids who go out of the class for services but we aren't always going to be so lucky!

My point is, there is no problem picking and choosing. Slow and steady wins the race and having a normal life sometimes is well worth one less therapy in my opinion!

[Ainsley's Mom]

It sounds like you are in a transition period. Done with feeding. And the SLP's new focus isn't feeling worthwhile to you. Is this private therapy or through early intervention?

If it's EI then you could ask for an evaluation. Sometimes parents mis-judge their child's level. But you are right that sometimes they can't accurately gauge the child's level if the child won't "perform" during therapy. Most trached kids are delayed in speech and communication so it is natural to have an SLP. That's not the same being cognitively delayed. And even if receptive language is on target it is still important to work on spoken language or other communication methods. Any form of communication encourages more communication. If the child can't tolerate a PMV and doesn't otherwise have a voice it's pretty hard to work on oral speech. So then it usually falls to some other communication system in therapy, like PECS cards or a simple AAC system.

I think there are times that taking a break makes sense. I know what you mean about being able to do the therapy myself. After doing EI for 3 years I did feel like I could do it myself. And I could. Now I see it differently. The therapist is like a coach who helps you formulate a plan and holds you accountable. One hour a week really isn't going to do a ton for a kid. The real work happens with the parent.

Lastly EI and school therapists have a certain role to play. They have goals that may or may not align with your own. You generally get more control in private therapy and that's why many parents do outside therapy. If you aren't happy with an outside therapist's methods/style/focus you can ask them to make a change or find someone else. Not necessarily so in EI or when you get to the school level.

Ultimately if you are feeling that therapy isn't worth it, it probably isn't for one reason or another. You can always take a break and come back to it. Or another option is to decrease the frequency for awhile.

[koko]

Originally Posted by Ainsley's Mom

The therapist is like a coach who helps you formulate a plan and holds you accountable. One hour a week really isn't going to do a ton for a kid. The real work happens with the parent.

Well said, Susan. A lot of what therapy entails, is just that: family education and practice. There are certain skills and resources perhaps that only a therapist may be able to provide (e.g. equipment, formal assessments, specialized sensory/rehab gyms, assistive technology trials, acute rehab, etc.), but a good therapist not only provides active "treatment", but also works with the family to develop a plan/goals, makes recommendations, and gives families the tools they need to integerate that therapy into their daily lives. I have been at both ends of this process - as both a therapist (OT) and a patient myself - and I can honestly say that the work we put in at home on a daily basis is far more difficult,...but to me, it is also 10x more therapeutic and rewarding!

[principe]

Yes, everything everybody says is so true and is great advice. Hard to elaborate now as a lot of thoughts are going through my mind. But I do want to say that when Aldo was seen by speech through the hospital, and not EI like he is now, I was very pleased. Every time an EI therapists mentions that a child at Aldo's age should be doing this and that just ticks me off. It makes me feel like they are not focusing on Aldo but at what he should be doing that other kids his age ate doing now (another kid to them, it seems to me), which like 90% of those things he does. That other 10% he doesn't do is not worrisome to me because little later on I see him mastering a skill he didn't have a few days back. Plus, as mentioned sometimes Aldo won't perform in front of the therapist.

I don't think every single toddler, even a non trached one, masters 100% of the skills according to the age guidelines, at the same age as any other toddler. But it could well be that I might need to switch therapists. I do feel that his current speech therapist is knowledgeable on the subject but there's just something that isn't working, the way I see it, I guess.

Thanks everyone, I truly appreciate all of your advice. I'm going to come back this thread over and over again because I really can relate to what everyone said and is going to help me figure things out. A lot of info at once but all so true.