Very frustrated - not sure how to proceed

[khaoskat]

Ok, quick history/review..

In March met with Ped about issues with DS2. Referred to Dev. Ped.

In May we met with Dev. Ped. They did a Speech Eval and OT Eval. Results came back already in both. Speech was basically keep doing what we are doing. OT Eval recommended OT - slight fine and gross motor delays, visual balance issues, sensory issues. Dev. Ped is in another city. Gave copy of report to our speech therapist on both speech and OT Eval.

In July we did 5 year well child, and asked Ped about referral to do OT. We got it, but it came in as a referral for at OT Eval at our local therapy place.

Today - did not go well. They saw absolutely no issues...had not even read over the report from the Dev. Ped from their OT Eval. Dissmissed everything I said...wanted to know what my issues were with him. Heck, I do not even remember..I wrote the list over 5 months ago when we met with our Ped. and she kept the list. The Dev. Ped was 3 months ago.

In the intervening time - 1) Gave Birth; 2) Been through 3 kids having surgery, two on an emergency/emergent basis (Pyloric Stenosis - after dealing with the projectile vomiting for a week; bad mouth laceration; and tonsil/adnoid removal); 4) moving or trying to move....and all of this has been since the Dev. Ped Eval... Oh, and let's not forget, I was a little pre-occupied with other things on my mind because I had just been dealing with him melting down over a toy that was put in time out from him because he did something with it he knows not to...

So, basically, even if the results of the Dev. Ped come back that he needs these services, we will be refused them. I do not seen any reason at this point in time in going down to get the results, because there is nothing I can do with the results once we get them.

I knew how it was going to be from the get go today. Everything I said was dismissed and said normal or typical for his age. When I brought up the eating issues and need to chew - she told me it should/could be addressed in ST. Well, I told the ST about this like 2-3 years ago.....and all I was told was to use a Chewey stick with him....She had not even read the report from the other Eval...



At this point, I am 1) Not going to cater to his food preference, then we he starts loosing weight and getting malnourished, maybe they will listen to me....2) I am not going to button or zip his pants for him --- maybe when we show up to the place for his speech therapy (same as where they did the OT Eval today) I can say, well, gee, don't know why - according to your OT he can do these things just fine...so I am not doing it for him and this is what we have).

I mean how many kids cannot button a shirt that is the size of their daddy's clothes...vs real life application of when they cannot see, or can barely see the button on their pants.

Edited to add: Not to mention I have the last two years of his private preschool Brigance Screenings that have him not able to do things like balance on either foot for 5 seconds or walk across a balance beam...

[2boyzmama]

Was his eval today at URS? We have been there, frankly I'm not impressed. They messed up big time on Connor's evals, and his therapy was just playing (and he was there for speech!). I gave them the benefit of the doubt, waited a whole year hoping they would get better (oh, I did have them re-do the eval because it was straight out wrong in many places, even his date of birth!, the sounds he could and couldn't say, and they never once mentioned his lip repair or his underlying diagnosis of a genetic syndrome!) Then I put him on the list at Dayton Children's, and I am SO GLAD I did that! Within two sessions he was making progress! He's now going there for OT also.

The list is longer at children's, but for good reason. And now is the time to get in, because many kids drop out of therapy when school starts again. We were able to change Connor's appt times because of how many kids were dropping out. So I recommend asking for a new referral, go to Children's, take your lists and the other evals with you, and give them a try.

[khaoskat]

Originally Posted by 2boyzmama

So I recommend asking for a new referral, go to Children's, take your lists and the other evals with you, and give them a try.

This was actually at Children's today. I was rather annoyed, because I knew from the minute she started asking me questions, and the answers I gave, how it was going to be.

I think the whole thing was like 15-20 minutes long, including the questions she asked me...

She asked if he could put socks on - I said I have no clue, because he refuses to wear them...if we put them on him, he pulls them off and goes barefoot in his shoes...

All the kids (or whomever is sitting in the back of the van (ie non front row), has to be hot and uncomfortable, because he cannot stand the AC being on...it is too cold for him...

Mentioned that he will only eat either very soft foods or very crunch foods. He will eat a banana (again a soft food) - he will actually do bananas, strawberries, peaches, watermelon, pineapple, and apples; but will only each raw carrots. He wont eat most meat..or will take one or two bites.

Her response was typical for his age. Um..then why does he get up from the table, and go sneak foods he likes when we give him what we eat...he stashes food he likes for later eating. And he is back at doing it again...

Told her about his need to chew everything - pulling wheels off of hotwheels, or other cars and chewing them...chewing on pencil erasers, chewing on hard plastic...

and I was like how am I supposed to get this child to eat foods...her response was they can work on those issues in speech therapy - oral motor issues.

You know, these are all things I have brought up to previous speech therapist, and all I got was to get him a chewy toy.....


I honestly do not know what good going down to Cinci will be right now, except wasting 4 hours of my time between travel and the appointment and the money to get down there and back...No matter what she recommends, they will re-eval him up here and refuse services...so I am back to where I was before getting the eval.

Honestly, is it too much to expect that you will have reviewed the OT Eval from the Dev. Peds. so you are familiar with it...

[2boyzmama]

Hm. We have had good experiences at rehabilitative services at children's here, sorry!

I do think that some of that behavior is in the realm of normal, but intensity is what matters. Heck, any kid will prefer foods they like, and some may have weird sensory quirks (as a kid I would only eat broccoli if it was really soft, hated it raw or even a little crunchy. I only ate carrots raw, didn't like them cooked. Also wouldn't eat anything with tomato, including even spaghetti sauce, pizza sauce, lasagna, etc. I have eased on those as an adult, will eat broccoli or carrots whichever way, and although I still don't like tomatoes especially, I do eat tomato products) My 5 year old right now is going through a phase where he's refusing to wear sandals (even in this heat!) and insists on socks and tennis shoes. Strange, I don't know what brought it on, but whatever, it's his feet.

So I think that the OT is right that some of that is normal for the age, what might make it abnormal is the level of impact to his daily routine and to the rest of the family. Ian wanting to wear socks and shoes only doesn't impact the rest of us, so I don't care. Him preferring a different temperature, *and him throwing a massive tantrum about it*, might impact the rest of us, and that's when it might become more abnormal.

So I think that's what you should focus on if you talk to someone else about it. Acknowledge that maybe the behavior is similar to age-appropriate behaviors, but that the impact it has on the family is not.

[khaoskat]

Honestly, at this point, I am not going to fight it. I am not going down in the morning, no sense in wasting 3-4 more hours of my time and the money we don't have for gas right now.