Updated Down the services rabbit hole -- help with an IEP first time?

[hillview]

UPDATE
We had a great meeting yesterday. As a group we decided to put DS2 into 1st grade again so he will be the oldest in the class and given some of his learning and other challenges this seems like the best fit. We will start him off with a 504 and reevaluate in early October to determine if he needs an IEP as well (and if the 504 is working properly). THANKS ALL!
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DS2 had an OT eval which we clearly should have had done sooner. We had DS2 evaluated by a neuropsych last year and while he was only 5 he appears to have ADHD with poor impulse control and NLD. DS2 currently sees a psych once a week and the OT found a bunch of stuff that he needs support with so we will be adding weekly OT work. OT also suggested we have DS2 have a PT eval and a speech eval (he had speech services ages ago as part of EI) and a learning center evaluation (DS2 is moving from private school to public school). I am exhausted just thinking about all this.

We are meeting with the head of the public school, the head of school special needs (he is a psych) and a special services person later this week to discuss everything. The school is suggesting DS2 get an IEP in place. we are lucky to be in a very good school system that is well funded so our psych thinks that DS2 will get better services and assistance in the public school vs private. I feel like a jerk that I didn't get DS2 an OT eval earlier as I think he would have benefitted sooner.

So ... since we are meeting with the school for the first time. I've sent the full neuropsych eval, and additional language eval we had done (to rule out dyslexia) and the very new OT report (which is 15 pages long!!). What would you prepare or have ready? It seems to me that there could be 4-5 DIFFERENT services DS2 gets (OT, PT, psych, learning center, speech) ... how on EARTH do you both coordinate all this in terms of logistics and also keep everyone on the same page and coordinated?

SIGH. thanks to all your special mamas who have BTDT and can help :)

[Pepper]

I would start with reviewing the recommendations for classroom modification/adjustments/therapies made by the person who did the neuropsych eval. Use that as the basis for your list of services, and then I'd add in any other services/accommodations/issues that are raised by the language and OT evals. Keep in mind as you go through the list, what specific challenges does DS have that might affect his ability to access the curriculum (i.e. can't sit still so needs movement breaks or fidget toys, isn't listening/processing spoken directions so needs picture schedules). It's not unusual for a child to receive so many services and the school is used to working out the schedule. You may want to clarify with them on things like, DS will receive speech therapy twice a week, but will it be in a small group or an individual session?

DS is starting kindergarten, yes? I think it's amazing that all those people are willing to meet with you! Good luck with the meeting, hope all goes well.

[annex]

Things that I've found helpful and wish I had done sooner :

1. Get an advocate who will be familiar with your son's needs and come to IEP team meetings with you. Not cheap, but generally they know the laws, the acronyms, the administrators in your district, etc. And just having another adult in the room who is on your child's side (vs. the school's side) makes everyone place nicer together. I was getting too emotional in the meetings, and not being successful at getting the outcomes/services I wanted, until I started doing this.

2. Connect with your school district's PAC (aka SEAC) aka group of special education parents that usually meet once/month to support each other. Our has lots of parents who can help you understand your kid's IEP/services and what some of the norms in your district are. Without the other parents, I would be so much more confused, and I've made multiple friends too. They're also great at helping me with other needs like recommending camps, dentists, doctors, etc. that are good fits for my kid's needs.

3. Stop kicking yourself for not getting help sooner! Easier said than done, but I try my best to focus on what I am doing now, the progress my DS is currently making, and the strengths he does has which we can leverage as supports for him in activities that are more challenging.

In terms of coordinating services, with an IEP, in our district, you will be assigned a case manager (sometimes one the special education teachers in the school building, perhaps another staff member.) They will be your frontline support for when there are issues. If your DS qualifies for all the services you listed, there's a good chance some of those service providers will not pull him out of class to work with him, but rather hopefully they will take come in and perhaps provide them during a center (e.g. OT), or during gym (e.g. PT), or during lunch (e.g. social worker/psych services.) Or if there's a group of kids in your son's room with similar service needs, they will probably work in groups together with the therapists. Worth asking what the plan is, and expressing your preference for how you want the services provided, so everyone is on the same page. Schools can vary a lot in how they handle therapies. You can also decide to refuse some services if you would rather do them privately after school vs during the school day.

HTH,
Anne

[sste]

All the advice above is wonderful!

Just wanted to add that I think our DSs are similar age. I wouldn't worry about it being "late" to start in kindy or first grade, to the contrary! We found that our DS was only ready to make serious OT progress once he kindy and had the motivation of the other kids all writing, etc. And in one year he went from not being able to write his name and despising any art/craft activity to writing sentences and begging us for more art supplies. A lot of kids (and mine in particular I have noticed) develop in more of a fits and starts model.

My district is pretty generous with services and we found that almost no one gets OT more than 20 mins per week, I think that is quite common throughout the country. Also the OT will only cover activities relevant to school success -- handwriting, dealing with pants button, opening locker, etc. We had to push a little for OT evaluation -- the private evaluation is not determinative and they will do their own eval usually I believe. Private OT is more comprehensive but you have to weigh that against all the to and fro of running to appointments. My DS was mildly delayed in the OT area and for him the weekly in school therapy we started plus piano has been enough.

We decided to do psych/CBT out of school because DH was worried about stigma or staff developing conceptions about DS. I was worried about quality and also that if we upped it to three therapies/four sessions per week speech, OT, psych that DS would start to perceive that something was wrong or different about him. I think you have to weight that against the value of the therapies and of course some kids are more sensitive than others--some might not really notice. Also I wanted a very specialized psych therapy that I didn't think the school would provide.

HTH Hill, it can be VERY overwhelming at first but once your DS gets into a routine it will be much, much easier.

Also, our school in the early grades has a "power hour" or period where each kid works on individualized stuff they need to improve on or need enrichment in. Therapies take place during this hour usually which is great as your kid isn't missing anything. DS did speech twice a week in a small group, a few other kids from his class, no stigma or fuss. For OT, he was a little bummed initially about "another therapist" but the therapists came to the classroom and worked with DS and often pulled another random kid just to make DS feel less self-conscious. Also both SLP and OT (esp our first OT) made the therapies pretty fun so DS never minded.

[hillview]

Thanks all DS2 is 6, turning 7 this summer. He is in 1st grade this year at his montessori school (where grade level is somewhat abstract due to mixed age classroom and child led material selection). One of the topics for the meeting with the public school team is what grade to put him in. He is 7 days short of the cut off that would force him into 1st grade. Academically he is at grade level (for 1st grade) but then there is all this other stuff so putting him into 1st grade (again) might be a good idea. He is also a very big kid (in size 7 pants this past winter). He is tall and 65 lbs. It is a hard call. I can debate myself to death and decide one way and then 12 hours later convince myself the other way.

[sste]

Hil, I am not following the cut-off - - are you saying for your district he would be put into second? Is he at grade level for end of first grade or beginning? My DS is 6, turning 7 in October, also in size 7 pants and one of the bigger but not biggest in his class. He is just starting first next fall per our state cut-off. It is crazy how this varies from state to state!

I think 6 turning 7 is plenty of time to work on OT, don't worry!

On the grade level, did your neuropsych have an opinion?

[hillview]

so his birthday is the 23st of the cut off month. The cut off is the 30th. So using the cut off date he will be the youngest (or maybe one of the youngest) kids in his class with kids who are 1 year older him also in the class likely. Based on the cut off he would qualify to go into 2nd grade. BUT given everything else on his plate I think it could be good to consider holding him back -- we are going to defer to the school (the psych we have been working with suggested this, that some schools are more focused on academic progress and others are more focused on social skills; if academic, we'd go with 2nd grade i guess; if social/behavior then he would be better off in 1st grade I think).

[mom2binsd]

I will caution you about bringing in an advocate from the get go... Do you know whether the school has a good reputation for providing services, it sounds like a lot of folks who don't alway attend iep's are already attending which to me is good (I worked as an slp for 15 years in the schools).. Some advocates do more harm than good... I think it's a good idea to bring someone like a knowledgeable friend who has maybe gone through this or even the preschool teacher, or your spouse/partner.

Sent from my SPH-L710 using Tapatalk 2

[hillview]

People have assured me that it is a great system with great resources and that I don't need an advocate. I am bringing DH. I plan to have a binder with all the reports we have on DS2 printed out
- Neuropsych eval
- Neuropsych follow up for language based learning eval
- Latest teacher report card (just got this)
- OT report
- Email from his current school with what they do now to support him

[Gena]

It can be overwhelming when you are first starting out, especially when your child is getting multiple services. PPs have given a lot of good advice. Here's a few things I wanted to add:

In many districts there seems to be a growing trend for speech and OT to be co-treated. This means the speech therapist and the OT work together towards a child's speech and OT goals in the same session. DS has been getting his speech and OT as co-treatment for the past 2 years. I was skeptical of this at first, but I did some research and there's actually a lot of support for this. And DS has continued to make excellent progress on his IEP goals, so it seems to be working. It also has the advantage of less pull-out time from the classroom.

In my district (and I suspect many others), it is really hard to qualify for PT without some kind of serious physical disability. Instead, students with gross motor difficulties may qualify for APE (adaptive physical ed - kind of a mix between PT and gym class). APE is often in a group setting and works on gross motor skills and motor development.

Your child will probably be assigned a case manager, who will keep in touch with the various therapists/teachers, coordinate IEP team meetings, keep track of district resources (options), and handle the mountain of paperwork that's involved. A good case manager can be a godsend. I love DS's case manager. She settles disputes between his therapists, makes sure his teachers have enough resources, checks on his progress, and let's me know when something new is or isn't working for DS.

Know your rights and your child's rights. The school or district is required to give you a booklet that explains these rights under IDEA. Read it. If you don't understand anything in it ask your child's case manager, the state dept of education, or a parent support group.

I highly recommend you read Wrightlaw's book "All About IEPs". It's a quick and easy read, written in Q&A format, bit has a lot of great information in plain language. I recommend their I other books too, but this one is a good start. You can get it on Amazon.

ETA: even with all your reports and previous testing, it's very possible the school will want to do their own evaluations, so be prepared for that.

[niccig]

This is an aside to the IEP. DS made transition from a school with similar philosophy to montessori to the public school. There was an adjustment period. DS's teachers was lovely and I met with her 2nd week of school to talk about DS and the transition. DS struggled with all the extra rules. Eg. lunch had more rules about where to sit, how long, once went on the playground you can't go back to eat as there's another class coming in. Some of these rules weren't communicated to DS or he didn't hear them eg. he told me didn't have enough time to eat and had to leave tables at certain time, turns out you can stay longer but must move to one of the front tables, so next class has room.

I told DS that the public school has more kids and rules have to be different, couldn't be as flexible as his old school. I checked in with his teacher to get clarification as needed. He adjusted, but first couple of months we heard complaints about the rules.

Just thought I'd mention this as a FYI.

[hillview]

I love all of you. thank you!

[hillview]

Update in OP

[KpbS]

Great news about the meeting going so well! I think it is a smart decision to place him in first grade. He will have a lot of transitions like Niccig mentioned with very different classroom rules, new kids, new ways of instruction, etc. I think it will be easier for him to be older than the very youngest. I hope it is a great year for him! :hug: