What to look for in a feeding therapist?

[AimeeM]

The Marvelous Flying Marco goes in for a feeding therapy eval tomorrow. If I recall, the eval is to determine if he needs and OT or a ST as a feeding therapist. I'd like to know what to look for in a feeding therapist prior to him obtaining one, though, so any help would be appreciated.

 

 

[Lecka]

I know little about this, but here if a child needs a swallow study, the nearest place is a hospital an hour away.

 

And then you just have a couple of people who you can go to after that, and you want to make sure they work a lot with kids. Sometimes I have heard people get the list of names and some really only work with adults in a hospital setting.

 

If you don't need a swallow study, then rapport is extremely important and I would look for rapport and switch if it isn't there.

 

I went to a presentation on food chaining ( I think) and it seems good, there is a website. They go from certain foods to certain foods that have similar things about them.

[Lecka]

I googled food chaining, and I think that is what I saw the presentation about. I really like the speech therapist who gave the presentation.

 

When you talk to other parents in the waiting room, they may have kids who have had a feeding tube, never suckled as an infant, preemies, etc. It is not all autism parents and some parents have really different concerns and needs, and so I would keep that in mind. You need someone good with your son, however good they are with a different area that is related.

 

I had a kind-of bad experience where we were seeing someone who was amazing with feeding issues with a lot of kids, but it was not what my son needed, and it took me a while to figure out I needed to look for a different provider.

Edited November 3, 2016 by Lecka

[Lecka]

I think I would look if possible for someone who has a lot of clients where he is on the older side. I don't like it when other clients are all a little older and the therapist is used to a little older kids.

[PeterPan]

Our first SLP specialized in apraxia and feeding disorders, but I don't know how you get trained in feeding or how to know a good one.  My only little bonus tip is to agree on rapport and look for ABA skills.  When your dc is complex, it's always nice to have that bonus of someone who actually knows how to handle behaviors, knows how to make the session extra valuable.  

 

Are you allowed to push for OT *and* the SLP for feeding?  I mean, my lands, kids can suck up therapy.  If the insurance will pay for it and the driving won't make you crazy, do both.  Maybe OT for sensory and self-regulation with bonus on oral tone or something.

[Lecka]

I meant to say, I am sorry your son is having this difficulty. It is one of those where it seems so stressful! I hope your evaluation goes well and you get hooked up with someone really good.

[prairiewindmomma]

We had a kid go through feeding therapy.  There is an overlap between SL-P and OT on this one; we actually found that the SL-P certified therapist was a better fit for my child than OT even though dd's issues were about oral tone and dysphagia.  My point is, don't get caught up on particular certification labels as what you're looking for is a good personality fit, a desire to customize their skills to help your child, and considerable experience in your particular issue.  I prefer to go to specialty clinics where you have a team evaluate and then you are assigned to a specific therapist.

 

They should look at:

physical positioning when eating

motor coordination when eating

oral tone

swallowing: initiating by creating a bolus, pharyngeal, esophageal

variety of choice in eating: temperature, texture, taste

and a whole long list of other stuff

 

[AimeeM]

The eval didn't go quite as I'd expected, but I feel pretty good about it.

 

The head OT decided that they really couldn't work on feeding until rigidity/flexibility had been worked on. Since almost all of Marco's feeding issues center on just that - his inability to be at all flexible (i.e. cheese on the pizza slice slid off a centimeter to the right). Rigidity is is primary issue in all things (that and sensory seeking) so she wants to focus on that and then tie into the feeding issues. The evaluator herself is going to see DS once weekly to start with, then we'll reevaluate for more OT, etc.

 

He does have a tongue-tie, too, it was discovered today, but we decided to put off the procedure to fix that. With his sensory issues, any "wound" in his mouth during the healing process will result in him refusing to eat (and possibly drink) and we can't - right now - afford for him to not eat for days at a time.

[Lecka]

That sounds really promising!!!!!!

[PeterPan]

And he's getting ABA right now or he's not getting ABA?  Because with that level of rigidity, OT wouldn't have been my like wow that's how we're gonna work on that choice.  For us, a lot of that chilled out when we brought in the ABA team.  Lots of social thinking, supports, bringing the whole intensity of EVERYTHING down. We do art for it now too, because art is very flexible and wishy washy and lots of ways to do things.  OT people do social thinking too, but that's some pretty wicked rigidity.  I'd be asking about ABA.

[chiguirre]

The eval didn't go quite as I'd expected, but I feel pretty good about it.

 

The head OT decided that they really couldn't work on feeding until rigidity/flexibility had been worked on. Since almost all of Marco's feeding issues center on just that - his inability to be at all flexible (i.e. cheese on the pizza slice slid off a centimeter to the right). Rigidity is is primary issue in all things (that and sensory seeking) so she wants to focus on that and then tie into the feeding issues. The evaluator herself is going to see DS once weekly to start with, then we'll reevaluate for more OT, etc.

That sounds like GW when he was about 3 or 4. Our "solution" to the problem was to feed him whatever the heck he would eat in industrial quantities. He ate a lot of French fries and chicken nuggets, pasta with pesto, gfcf toast (we tried the gfcf diet, it didn't work, but he loved the gfcf bread). He survived. He's 6'1" now and very athletic and does eat a normalish range of food with a couple of veg choices. But, when he was a super rigid 4yo, the best we could do was play along with his rigidities and get calories down his throat.

[AimeeM]

And he's getting ABA right now or he's not getting ABA?  Because with that level of rigidity, OT wouldn't have been my like wow that's how we're gonna work on that choice.  For us, a lot of that chilled out when we brought in the ABA team.  Lots of social thinking, supports, bringing the whole intensity of EVERYTHING down. We do art for it now too, because art is very flexible and wishy washy and lots of ways to do things.  OT people do social thinking too, but that's some pretty wicked rigidity.  I'd be asking about ABA.

We looked into ABA, and researched it, and decided against it. Just a personal decision. We decided to go with OT, feeding therapy, and ST. 

[AimeeM]

That sounds like GW when he was about 3 or 4. Our "solution" to the problem was to feed him whatever the heck he would eat in industrial quantities. He ate a lot of French fries and chicken nuggets, pasta with pesto, gfcf toast (we tried the gfcf diet, it didn't work, but he loved the gfcf bread). He survived. He's 6'1" now and very athletic and does eat a normalish range of food with a couple of veg choices. But, when he was a super rigid 4yo, the best we could do was play along with his rigidities and get calories down his throat.

That's about where we are with Marco :) And a lot of praying. Praying that the chicken tender breading doesn't peel off and the cheese pizza looks identical to the one he ate yesterday, lest he decide it isn't the same and refuse to eat it.

The OT suggested (during the eval) that we take a picture of him eating each thing, so that when refuses it later we can show him the picture to help him visualize that it isn't different or disgusting.

[Lecka]

I think it is really promising when you leave the first time and have a solid suggestion like that, before she has even started working with him.

[AimeeM]

I think it is really promising when you leave the first time and have a solid suggestion like that, before she has even started working with him.

She had several good suggestions and it did leave a good impression that she would make suggestions to help with the feeding even though that isn't her specific "target" with him right now. She also really hit it off with Marco, which is a huge plus. 

I was skeptical about in-clinic. We've only ever done natural environment therapies before, but the clinic is so much fun (and a better fit, actually, since he can't inappropriately recreate the therapies and input - we don't have the equipment for him to do so, lol). 

 

They also said they'd see if he was a fit for ILS (Integrated Learning System). I'm not entirely sure what it is, but I'll talk more to her about it at their first session.

[Lecka]

Hitting it off is priceless. Everything else sounds good, too. Way for her to make a great first impression!

[City Mouse]

I just want to say that I think the idea of taking pictures of him eating specific items is great. I have never heard that before. I wish someone had suggested that when my DD was little.

[geodob]

AimeeM, I really wonder about looking at this as a Feeding issue?

As the real issue, could be with his rigidity/ inflexibility?

With Feeding, just being one activity that is effected by this. 

Which I suspect, effects a spectrum of other activities?

 

Where Feeding has been singled out, because of its health consequences.

But I would question an approach, that tries to address a symptom?

Which just aims to expand the foods that he eats, to provide a 'healthy diet'.

That rather attempts, to expand the range of foods, within his rigidity/inflexibility?

But doesn't try to address, the underlying issue. That also effects his feeding.

 

What I would rather suggest, is that understanding and working on this rigidity/inflexibility should be the focus.

With his Feeding, being used as one element to identify progress?

 

While we have these terms: rigidity/ inflexibility.

This is different from resistance, where at some point, he did try eating a pizza.

He was open to trying it.

But at some point, he identified his definition of a pizza.  

Which at a deeper level, has been recognised as 'safe'. 

Where the 'cheese sliding off the pizza a centimetre to right'.

Is parallel to visually recognising that a piece of fruit, is or isn't ripe.

 

But underlying this rigidity/ inflexibility?  Is a resistance to explore new possibilities?

Though a distinction here, is the difference between no exploration at all, and limited exploration.  

So that he did explore a Pizza, and then defined a Pizza model, and Stopped any further exploration of different Pizzas.

 

What I'm thinking of?  Is an approach that helps him to develop the confidence and interest, in exploring new possibilities?

To be open to the question: 'What if ?'

 

Which allows us to reform the way that we do things.

What if, the 'cheese slides off the pizza a centimetre to right'?

So that while he recognises the difference, he is open to exploring what actual difference it makes?

That might revise his model.

 

What I'm thinking of?  Is more of an approach, that helps him to develop the confidence and interest, in exploring different possibilities?

That could start at a very basic level, but establish a confident foundation.

Where he tries a different way of doing something, and then considers what difference it makes?

 

Coming to the subject of feeding?

What difference would it make, if he started learning to make his own pizzas?

Where he is encouraged to explore different possibilities?

How adding or taking away certain things from the pizza, will change it's taste.

To the pizza that he just made.

 

Where he also grated/ placed the cheese on the pizza, and put it in the oven.

Then observed how the melted cheese flowed. 

Also how when a pizza is taken out of the oven, it needs to be kept 'level'. Or else the topping will slide to one side. 

 

This will give a whole new meaning, to him seeing that the cheese has slid to one side.

Having put all of his time and effort into making the pizza, he will no doubt want to taste it !

 

Which could be extended to involving him in preparing other meals?

Not simply doing tasks, but perhaps also involved in a discussion of what ingredients to add?

Having been involved in the whole preparation of meal, through to putting it on the plate, and carrying it to table.

I think that he would be keen to taste it!

 

So that what I'm thinking of, is that by involving him in the preparation of meals?

Not simply the physical tasks, but also what ingredients to add?

His might discover one of life's greater joys?

To be able use our science laboratory, the kitchen.  To select different elements, choose a way to prepare and combine them?

Then to carry them to table, and taste what we have created.

[AimeeM]

A lot of great suggestions.

 

As I mentioned upthread, the OT did decide that this was more an issue of his rigidity, so his therapies will be focused in that direction :)

 

 

At this time, he cannot help with food prep. It isn't safe for him to do so. His sensory needs, rigidity, meltdowns, and communication skills need to be addressed first. 

 

Thanks so much for your input!

AimeeM, I really wonder about looking at this as a Feeding issue?

As the real issue, could be with his rigidity/ inflexibility?

With Feeding, just being one activity that is effected by this. 

Which I suspect, effects a spectrum of other activities?

 

Where Feeding has been singled out, because of its health consequences.

But I would question an approach, that tries to address a symptom?

Which just aims to expand the foods that he eats, to provide a 'healthy diet'.

That rather attempts, to expand the range of foods, within his rigidity/inflexibility?

But doesn't try to address, the underlying issue. That also effects his feeding.

 

What I would rather suggest, is that understanding and working on this rigidity/inflexibility should be the focus.

With his Feeding, being used as one element to identify progress?

 

While we have these terms: rigidity/ inflexibility.

This is different from resistance, where at some point, he did try eating a pizza.

He was open to trying it.

But at some point, he identified his definition of a pizza.  

Which at a deeper level, has been recognised as 'safe'. 

Where the 'cheese sliding off the pizza a centimetre to right'.

Is parallel to visually recognising that a piece of fruit, is or isn't ripe.

 

But underlying this rigidity/ inflexibility?  Is a resistance to explore new possibilities?

Though a distinction here, is the difference between no exploration at all, and limited exploration.  

So that he did explore a Pizza, and then defined a Pizza model, and Stopped any further exploration of different Pizzas.

 

What I'm thinking of?  Is an approach that helps him to develop the confidence and interest, in exploring new possibilities?

To be open to the question: 'What if ?'

 

Which allows us to reform the way that we do things.

What if, the 'cheese slides off the pizza a centimetre to right'?

So that while he recognises the difference, he is open to exploring what actual difference it makes?

That might revise his model.

 

What I'm thinking of?  Is more of an approach, that helps him to develop the confidence and interest, in exploring different possibilities?

That could start at a very basic level, but establish a confident foundation.

Where he tries a different way of doing something, and then considers what difference it makes?

 

Coming to the subject of feeding?

What difference would it make, if he started learning to make his own pizzas?

Where he is encouraged to explore different possibilities?

How adding or taking away certain things from the pizza, will change it's taste.

To the pizza that he just made.

 

Where he also grated/ placed the cheese on the pizza, and put it in the oven.

Then observed how the melted cheese flowed. 

Also how when a pizza is taken out of the oven, it needs to be kept 'level'. Or else the topping will slide to one side. 

 

This will give a whole new meaning, to him seeing that the cheese has slid to one side.

Having put all of his time and effort into making the pizza, he will no doubt want to taste it !

 

Which could be extended to involving him in preparing other meals?

Not simply doing tasks, but perhaps also involved in a discussion of what ingredients to add?

Having been involved in the whole preparation of meal, through to putting it on the plate, and carrying it to table.

I think that he would be keen to taste it!

 

So that what I'm thinking of, is that by involving him in the preparation of meals?

Not simply the physical tasks, but also what ingredients to add?

His might discover one of life's greater joys?

To be able use our science laboratory, the kitchen.  To select different elements, choose a way to prepare and combine them?

Then to carry them to table, and taste what we have created.

 

[ElizaG]

FWIW, geodob's comments made me think of RDI's model of typical child development -- specifically, the stage at which the parent and child start to introduce variations into their games.   This is somewhat beyond the beginning, i.e.:

 

attention

-> engagement

-> referencing

-> coordination of activity for joint effort

-> variations on a theme

 

I remember you mentioning RDI in the past, but don't know if the therapists you're looking at for this issue are familiar with that line of thinking.   If so, maybe they'd be able to think of some activities that could help build the foundational skills.  This could include tasks other than food preparation, if his food preferences don't allow for a safe way to do that (e.g. room temperature ingredients, spreader vs. knife).

 

Wishing you the best!