How long should I wait?

malcivar

L is in EI since last week and yes I know it's just been one week but how long should I wait before inquiring to see if one of the bigger concerns I had is being addressed by the OT? 

We got him evaluated a) because of his brother's DX and b) because some of his behaviors were either modelling his brother or his own special brand of issues and c) big one for me - his sensory issues regarding food.

The OT comes and I'm trying to talk to her about his food issues (textures and chewing and complete refusal to use a utensil) and she's concentrating on whether or not he can hold a scissor or string a bead.  I get it - don't get me wrong.  These skills are the building blocks for other skills BUT when we got the eval report there was next to nothing about his food issues though I did bring it up during our IEP meeting but I'm worried that just as it got brushed off during the eval it's going to get brushed off here in favor of other things. 

So, how long should I wait before I start asking if they're doing anything about his food texture issues?  Should I give it until their first update?  (should be beginning of next week)

typeset

When you developed the IFSP, were the feeding issues documented and a goal developed to address them? Did you sign off on the IFSP without them being included? The therapist is bound by what's in the document. Needs drive goals, goals drive services.

malcivar

It is on the IFSP.  Yes, the same one who did the eval is his OT now.  He's definitely not under-weight but I'm really concerned from a nutritional perspective.  Right now he's getting nutritional stuff through oatmeal for breakfast with jarred baby food fruit and then dinner which is basically home made baby food - soup made from rice, chicken broth, broccolli, carrots and celery. I'm not even too worried about spoons and forks yet because at this point, I'd be happy if just finger fed himself a piece of fruit - as long as he ate that fruit or vegetable or piece of pasta.

But outside of that all he'll eat is PB&J, and things like waffles, goldfish, french toast, crackers and pureed food.  Regular not pureed fruit, nope.  Veggies, nope.  Even things like a piece of pizza - nope.  

Or am I worrying about this unnecessarily?

Micelle78

I am going to give you my two cents

I was super worried about DS's lack of trying ANYTHING.  My kid still only drinks water but has also drank juice a few times.  I am very observant of what he does eat.  I try to encourage what meat and dairy he will eat and try not to let him load up on only carbs. He will eat any carb (bread, rice, crackers, cereal) as well as yogurt, cheese, hotdog, mac'n'cheese, chicken strips, mexican rice and beans, applesauce, petite carrots, and sugar snap peas. 

This is after a year of weekly feeding therapy (about 20 minutes with an OT that is only one in 112 people on our state--only one local-- that does this kind of therapy style).  Before that, it was basically chicken, yogurt, cereal, crackers, applesauce-- pureed gerber veggies at age 2.5.  He is trying things sometimes now and then will not eat them again.  He is really picky and it has to be the correct temperature and brand.  He can totally tell. 

I get the frustration you are having.  I still worry that even after the fact we are devoting so much time to this, he still isn't where he needs to be in terms of food.  He even has his off days when he will hardly eat a thing for a day or two. 

One thing that also made a huge difference is that we realized his vision was so bad right at age 3-- the month of his birthday.  Until that point, he refused to use a spoon or fork and would expect you to lift it up.  After the glasses, he had more confidence in his ability and had been working on crossing the midline activities as well as fine motor stuff and could finally successfully make a spoon stay the right position to not drop the food and get it to his mouth.  The day it happened the first time, my husband filmed it and played it to me-- I totally cried.  It was a huge deal.  He could feed himself already, just not coordinated enough with a spoon until then.

I would push this matter.  Eating is such a basic life skill that he needs help doing it now.  My son had a really hard time not spilling the food because he kept turning the spoon all weird.  Now at 4, he is pretty good at applesauce and yogurt.  We used yogurt as a practice food because it defies gravity a bit more than other foods.  Good luck!

Micelle78

To your comment on the pizza--

We went to my friend's DD's birthday party a year ago.  All the kids were at Chuck E Cheese and got really excited that the pizza came out.  DS climbed up in the booth and right before I could tell my friend that DS "didn't like pizza"  he scooped up a slice and ate it like everyone else.  I was speechless!

It has only happened a few times since then.  Probably two or three times over the past year.  I know that regardless of what i am making fr dinner, I can not count on DS eating it or even touching it.  i have to plan something else entirely.  In fact, he has his own section in both our fridge and pantry,

malcivar

-auntie- said:

It's hard to say.

It could be the OT wants to establish more of a working relationship before starting the difficult feeding stuff. Or it could be she doesn't share you sense of urgency around this. Or she may feel it's a situation where she is making sure the fine motor is in place first so she can rule it out as complicating this.

TBH, I know a lot of littles who eat this diet. Most aren't on spectrum. Usually the kids who can't do texture- don't do any texture- their moms complain they won't eat PB&J or grilled cheese even. Does his brother have diet issues that he could be picking up?

Maybe the OT can give you some ideas about how you can handle his meals on your watch. I mean, even when a child is doing therapy around eating, unless they're inpatient most of the heavy lifting falls on the family since they're there for most meals.

A kind of food chaining around texture might be effective. Perhaps feeding his food chunkier- let his dinner soup be less "processed" over time. Offer chunky applesauce. 

His brother is sorta picky.  He won't eat any sandwich other than PB&J but will eat an ok variety of things.  Likes beans.  Likes vegetables (cooked, not raw).  Likes chicken (dark meat, not white, and don't try to feed him a 'nugget').  Likes pasta, rice.  Apparently likes pizza and quesadillas.  But ... big but here ... it all has to be room temperature.  Anything too hot and forget it and even too cold - nope, no ice cream for him!

It's comforting to hear that even kids off the spectrum can be as difficult eaters as our little guy.  Actually come to think of it, one of his cousins won't eat an apple unless his mom cuts it up - just a certain way.  Daddy cut it and did it 'wrong'.  Kid wouldn't eat them.  

I'm going to try the chunky applesauce and less processed soup to see how he handles it.  The problem is sometimes when we give him that food, he'll gag because he doesn't want to chew.  It's like he doesn't understand that even if it's "wet" he still has to chew it.  Make sense?

Should've mentioned that other than the PB&J, all other carbs have to be dry.  French toast, no syrup.  Pancakes, no syrup.  Waffles, dry.  Fries, no ketchup.  

Thanks for the advice as always.

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