So fed up 😡 | Imamother

↑ mathbrain ↓

Yesterday at 12:57 am

I can’t say I could write your story 100%, but nearly. My 7 year old had medical delays and various issues since birth.
BH no epilepsy, but did have seizures. Gan Ezra was amazing. They really help you with so much. My child doesn’t have any diagnosis at the moment, but we are going for a comprehensive neuro-psych evaluation in the next few weeks. And for genetics in March.
We need a support group.

amother

↑ OP ↓

Yesterday at 9:52 am

amother Chambray wrote:

Hi there, a few things to note as I read through the responses posted here. There seems to be a lack of information or knowledge in those that are posting.
#1 it is extremely common in people with seizure activity that they will exhibit regressions and that they need to relearn skills they knew previously. However, once they are taught it again, many catch on faster than they did initially as the synapsis are still there
#2 when an individual is experiencing a seizure, this can impact their behavior, which would be the reason for your child's varying behaviors dependent on the day - this can be very much so linked to the amount of seizure activity going on.
#3 if you are saying that she exhibited signs of delay right from birth, this is no sudden unset which is the core principal of PANDAS. and BE AWARE. there are so many parents that run after this diagnosis in the hope that this will cure their child. In the meantime, time is passing and they are losing out on an opportunity they will never get back - intervention when the child is young. The amount of people that jump to this conclusion is both dangerous and hurtful.
Please do your research and speak to people that are qualified.

This is the first I’m hearing that it might be common to have speech regression with epilepsy. Why would the neurologist not mention any of this? I brought up our concerns multiple times. Supposedly the seizures are all under control with medication.
We want to rule out pandas just for my peace of mind knowing that I looked at everything from a medical side of view.

amother

↑ OP ↓

Yesterday at 9:54 am

mathbrain wrote:

How’d you get your child into Gan Ezra with only that diagnosis? We have a dual diagnosis and still struggling with the school district approval.
We have an appointment for extensive genetics testing in May.

↑ mathbrain ↓

Yesterday at 10:00 am

Who was your chairperson at the school district? I always found Elise Feilds to be very eager to get all preschool kids whatever they need so they can thrive.
Call Gan Ezra. (845) 356-0191
They can guide you.
They do the evaluations for you if you choose them as your agent through the school district.
The only question is if they still have room in their classes. But your child definitely sounds like they would be eligible.

amother

↑ OP ↓

Yesterday at 10:00 am

smarty skirt wrote:

Please, if your child is slipping into baby talk etc....is there a new baby? Does your child have speech issues that might be more pronounced than the norm for her age? If your child has speech issues then I would definitely request audio processing exam, if you are in NY I recommend Dr. Donna Geffner. Do not know your specifics so I cannot understand well what is going on with your child. Therefore it is harder to give ideas. Your child is in pre school so it is great that you are starting early. I would not accept any general labels like ADHD, I would find out EXACTLY what behavioral optomotrists and audiologists and speech therapists and OT's are saying about my child. You want to dot all your I's and have everything in place to be taken more seriously in general if you have not already. Wish I knew more years before I did!

You’re saying so much but also I’m confused. We’re very new to all this, any way you could clarify further? Whats an auditory processing exam? Is it like a sedated ABR? Audiology came back pretty normal after third hearing test. So we know it’s likely not a hearing issue.

What’s a behavioral optometrist?

I need actual recommendations and names, I’m beyond the point of doing research on every single person, I don’t know who to ask all this.

amother

↑ OP ↓

Yesterday at 10:02 am

mathbrain wrote:

Elyse was the chairperson, and we’ve had to fight like crazy. When did you deal with her?
HASC did all our evals.
Where am I going wrong??

amother

↑ OP ↓

Yesterday at 10:04 am

smarty skirt wrote:

Also, I don't know if you are in NY, but writing letters, you can forward the same letter to them again by email and say second request, then do that for the third request, try to be patient and lower your expectations, in other words, expect to wait. At least you are starting early! Make sure you know from your educational advocate how long they can legally take to respond to you, I am referring not to the school here. Try not to be so impatient that you jump the gun or do cart before the horse. Pace yourself, it is normal to work everyday on getting services for your kid, also make sure you get a caseworker to help with some of the phone calls to school and a counselor for the child to communicate with the school if needed. Make sure to maybe do a Magic 123 program and a Miriam Adahan gratitude victory book for example with your child......you need mostly positive tools!

I don’t know what half of this means. What and who is an educational advocate and how do I get one? Same with a caseworker.

↑ mathbrain ↓

Yesterday at 10:07 am

Not sure. But my child’s behavior wasn’t as bad, based on what you say, and we got in. I’ve dealt with her for 2 kids already. I actually spoke to her last week. She didn’t want to give us additional speech(above the standard 2 x weekly) that HASC wanted, but she just added OT per my request.
What is HASC telling you? I I find that they’re usually accurate based on your evaluations in telling you whether you’ll be eligible or not.

amother

↑ OP ↓

Yesterday at 10:21 am

mathbrain wrote:

Her behavior is bad at home, at school I think she’s very passive because she’s just falling between the cracks. According to her classroom eval she isn’t participating verbally, she’s last for everything etc. so when she comes home she loses it.

I didn’t get her IEP yet but I’m not even sure she got approved for OT PT or speech. Which is so weird. (OT is tricky because she can color well and hold a crayon very well, so I feel like her other deficits like having to hold on to me tightly to walk off a 1 inch step stool is being ignored.)

As per Hasc she qualifies. I’m just not sure about placement like you said and I understood she’d be approved for half a day.

↑ mathbrain ↓

Yesterday at 10:26 am

With HASC, you can go half a day and stay the other half for UPK. You’d only have bussing one way though. You can also pay for the other half of the day if no UPK.
My child’s behavior was terrible in school, good at home: had them evaluated in school.
OT is very hard to get. One kid we got it easily because of severe low muscle tone. But my child now, we only got it after a few months in HASC. You can easily get OT through insurance though.

amother

↑ OP

Yesterday at 10:32 am

mathbrain wrote:

Meaning I could pay for her to stay the other half day at hasc? Her current environment isn’t working and we’d need to find a different UPK program which is so hard at this time of year also.
We’re getting OT twice weekly through insurance. Is speech so hard to get through district?

↑ mathbrain ↓

Yesterday at 10:41 am

Speak to HASC, they’ll give you the options.
They know your case better than what I’m telling you, and are generally very helpful.

Anything through the district, you need to prove that your kid needs that therapy to improve their classroom function. So for a tongue thrust or lisp, you won’t get through the district. For terrible articulation that the teachers can’t understand them?
You’ll get.
For processing issues, ability to follow directions at age level, ability to process info at age level, you’ll get.
They’ll only approve you for an education based setting if your child is not managing to learn properly in a regular ed setting. So if they are bouncing around the classroom unable to sit still like my kid, but behaving well at home, you’ll get. If they refuse to engage in circle time or pretend play for whatever reason, you’ll get.
But if they behave well at school and seem to be learning well, but behave badly at home? That outside of their preview.
Did the current teacher fill out the evaluation forms? That’s usually very important to them.