[mommytoEli]

i finally got a call today to schedule eli's eval for services from the school district. here's a run down of what sensory things we are expeirencing right now:

awful toe walking- falling all day!

scratching skin til it bleeds

sensory seeking when overwhelmed- mostly scratching self, making carpet snow angels for hours

gagging when eating

eating non food items- ugh, he just yesterday ate foam number squares- the ones you make into a hopscotch- he ate off all the tabbies.

excessive meltdowns- LOTS Of screaming and throwing himself down

two weeks ago i tried to take him to little gym, for 20 minutes he made carpet snow angels, then the owner said maybe the music was too loud for him, turned it off, and he jumped up and went to participate. lol. really?

BUT....he knows all his letters- capitals and lowercase, letter sounds, can sound out words, write his name, count to 20, recognize numbers to 10, knows his shapes, and colors, and is super verbal....at THREE.

great....so they said, without even seeing him, that he will most likely not qualify bc his issues do not effect him academically. grrrr. so...they will see him next week so they have a record of evaluating him, but it is most likely another dead end for my son. i guess back to the doctor to push for something else. what the heck? this is crazy! at least in our old state he got pt through our insurance. here, we get nothing. it is just so discouraging.

[Michelle Smiles]

Ugh...hopefully who ever comes out is able to/willing to find some loop holes for him to receive the services he needs.

[krafmatic]

Grrrr! That drives me nuts! I sounds strange (and I mean this in the best possible way), but I'm glad that since my guys are having troubles that at least we have something on the MRI to point to and say "see this, this is why he needs help. And if you don't treat him now you are going to have a God awful mess later when he has a huge gap to make up...if it can be made up at all". Granted, we would still have a battle with insurance (is there ever a time when you don't?!?) but it gets peoples attention.

I know you've mentioned it, but I can't remember the answer...has Eli seen a pediatric neurologist?

I wish I had more advice for you.

[hesabanana]

Hang in there Brook!

[mommytoEli]

Originally Posted by krafmatic

I know you've mentioned it, but I can't remember the answer...has Eli seen a pediatric neurologist?

I wish I had more advice for you.

no...i'm going to wait until next week, and if they truly deny him, we will go back to the doctor and i'm going to ask to see some people.

[Amber76]

It is absolutely crazy for them to comment one way or the other on what services a child probably won't qualify for without doing an evaluation. And if they try to say his issues aren't having an effect on his academics, ask them what they think his likelihood of success in a traditional classroom for Kindergarten in a few years is. You also have the right to request an outside evaluation from a neutral party if they determine he doesn't qualify and you disagree with their assessment. I'm a special ed teacher and I have a massive issue with evaluation team having preconceived notions about qualification without ever seeing a child! Do you know who all will be involved in doing the eval?

[crick]

Uhm..call me silly and perhaps ignorant but with the challenges Eli faces, he WILL suffer academically once he is actually in school full time. Schools are loud and have a ton of distractions, and I dunno...how much is he going to learn if he's in the middle of the floor making angels?

This is stupid. They can't be serious about denying this when they have GOT TO KNOW what is in store for him in just a couple short years?

I feel for you and the battle you are going to fight. (((HUGS)))

[krafmatic]

[quote=Amber76]And if they try to say his issues aren't having an effect on his academics, ask them what they think his likelihood of success in a traditional classroom for Kindergarten in a few years is. quote]

Push this HARD. Don't do it in a hysterical mom at the end of her rope way, but in a calm, sensible way. When we had our eval last month I had to "remind" them that treatment now...even when it doesn't seem like much (in your case treating something that isn't typical like SI) will save the school system BIG later.

For me, what got Ian and Gabe accepted was a pediatric neurologist and neuropsychologist saying that it was imperative that they get intensive treatment now. If we waited, we would have a huge gap to make up...and as everyone knows preventing that gap form being so big in the first place is much easier that closing the gap after the fact. That is the whole purpose of Early Intervention.

Don't wait on getting scheduled for a neuro appointment (there will likely be a big wait for an initial appointment with more waiting for the tests). You may want to look into a neuro-psychologist. While my guys aren't being treated by her yet (she said that will come in a couple years most likely) she has been great about helping us push the school system when necessary.

Two more options are getting independent evals done and hiring an advocate. Both may require some $$ but both may provide the expertise needed to get these people to take notice.

[my3guats]

It is frustrating, not only for the parents but for teachers as well. In our state children do not quallify for special services based on OT(occupational therapy) alone. I am not sure if this is nation wide or not. In order for kids to receive OT in the school they have to qualify in some area as well(for example speech and language). Most therapies for sensory issues fall under the OT umbrella. I don't know your district but am speaking for mine...yes we do see the ramifications of needs like these but we too have to follow the guidelines set up by people sitting in offices who have not stepped foot in a classroom! Sometimes seeking private providers is the only way to receive the therapies needed. It is crazy because often early intervention can make the world of difference so that when they are in elementary school they have gotten to the point where they can work very well in a classroom situation...but instead it seems often we have to wait for failure before we can help...

[mommytoEli]

Do you know who all will be involved in doing the eval?

yes, amber....mostly the lady who told me he would most likely not qualify, and one other special ed teacher. apparently they take eli, by himself, into a room to do the screening, while i wait in another room. does that sound right?

Originally Posted by crick

Uhm..call me silly and perhaps ignorant but with the challenges Eli faces, he WILL suffer academically once he is actually in school full time. Schools are loud and have a ton of distractions, and I dunno...how much is he going to learn if he's in the middle of the floor making angels?

(((HUGS)))

yeah. my weird little kid. i love him so much. but i can't imagine him at school. i was really hoping to get him in an environment where people "got" him before he did have to do academics. but the people who are supposed to "get" him...don't....without even meeting him.

[trixila]

My experiences with Early Intervention trying to obtain services for my drug exposed child were very frustrating. We went to private therapy asap, and just bit the bullet. Same with my son who has adhd and sensory issues. Just had $$$ private testing done b/c the school administered testing was not comprehensive enough. I pick my battles. I don't have the energy to fight for services. Can't waste any time waiting for others to see the light. My medical bills are huge, but at least we are seeing progress. I know my kids best and if they need help, they will have it.

[JoshGuat]

Ignore the ladies comments and PUSH for your child. That is HOW you will get what you want. Just push VERY diplomatically. Take an liaison with you, if possible. Anyone who can be there to give you support. Do NOT sign off on the eval unless you have what you want, otherwise refer it to your attorney to review and get back to them

[Amber76]

MommytoEli-if you don't mind, PM me with the state you live in so I can try to look up what your state's law says. There is a section in IDEA-TitleI/A/602/3 Part B that talks about children ages 3-9 who have delays in emotional/behavioral/adaptive skills that might apply, but depends on your state laws since it's one the feds passed on to the states to interpret.
I think that once Ben is older, I'm going to make being a parent advocate my mission-I really hate how parents get jerked around and kids don't get services because of technicalities and because schools don't want to spend money!

[devildogwife]

Originally Posted by mommytoEli

yes, amber....mostly the lady who told me he would most likely not qualify, and one other special ed teacher. apparently they take eli, by himself, into a room to do the screening, while i wait in another room. does that sound right?




yeah. my weird little kid. i love him so much. but i can't imagine him at school. i was really hoping to get him in an environment where people "got" him before he did have to do academics. but the people who are supposed to "get" him...don't....without even meeting him.

Not to me and wouldn't like it. Cameron's eval team wanted him as comfortable as possible. There's no way I'd leave the room. In fact, after he started EI, his PT has barely even touched him. She is very kindly letting him get used to her as she watches us.

Feel like moving to my state? Our EI is great. Are you close to a good Children's hospital?

[krafmatic]

Our eval was done by:
an OT,
a PT,
a SLP
and the school rep who initially came to the house.
and one of the teachers of the class they will be going to (In our district they do services in a class type setting with all of these people in the room)

I was in the room the whole time. In fact Gabe never really left my side as he has some social/emotional issues.

My guys qualified as OHI - Other Health Impared. they wouldn't have qualified otherwise...only because we have been getting pvt therapy.

On the bright side (in a sick and twisted sort of way) - if they take him to a seperate room is he going to get really anxious and start making carpet angels? I say this because during the initial meeting with a school official Gabe was in full autistic mode...not making eye contact, emotionally walled off...and to top it off he started "humping the floor" his SI/anxiety thing. I guarentee she left our house thinking that Gabe was in serious need of some kind of help. I hate that people never see him at his best (just us at home) but in this case it helped close the deal.
Gotta love our quirky kids!