Overwhelmed and Confused - Setting up Kindergartener's IEP

[AuntJenna]

Hi! I am hoping I am posting this in the correct thread. I have a 5 year old nephew (I have custody) that I am trying to set up an IEP for my nephew "Bubby". He has been receiving private Occupational Therapist (OT) and speech services for a year now, and they are going pretty good. Well speech is better than Occupational Therapist (OT) but that is okay. Around Christmas last year, I was told by his Occupational Therapist (OT) and Primary doctor that it would be best if we got an IEP for him, so I was like "Okay I will just get that" Little did I know. It seems like it is a game of hurry up and wait. I thought that I started it early enough to get an IEP set up for when school started, that is what the lady at the school board told me. But I guess I didn't since they don't have to meet again until the middle of September. Problem is school starts middle of August.

Let me tell you a little about "Bubby" he has extreme sensory processing disorder (SPD), and problems with speech articulation. He has some fine motor delays (but this is getting better with Occupational Therapist (OT)) and he had some gross motor delays but is doing great now since attending Occupational Therapist (OT). He goes to a neurologist for testing for memory issues, and is set up to go to a set of doctors to see if he could have high functioning Autism - his neurologist thinks he might. (Problem is he doesn't go see them again until September and October). We do know that he has visual processing disorder and auditory processing disorder with his sensory disorder (as well as social, tactile are also defiant- the others were probable). He was also tested and had no visual memory yet, but that could come with age. We have been really working with him for the last several years, and he can now count to 6 without messing up about 75% of the time and can say/sing his ABC's to G without messing up about 80% of the time. I have finally gotten him to spell his name but other than the first letter he does not recognize any other letters in his name. He does recognize O and t (but he calls it a cross). I was told by both his private Occupational Therapist (OT) and Speech that he would still need to receive private sessions even if he got them in school, which at first confused me because I thought that was such a great benefit of getting it set up in school, he wouldn't have to miss and less travel. But its okay if he needs it we will do it.

I know that they will teach him all this, and he has an amazing school, his neurologist wanted us to thank about putting him in a private school until he heard that the school distract we were in. That says a lot for the school itself. We are very very lucky in that regard, but I can't help worrying about my little man.

I am currently in the "testing phase" of his IEP and I am overwhelmed and I really shouldn't be I know. But so far, he has met and tested with a PT (why I am not sure but they had it marked) Occupational Therapist (OT) and Speech pathologist, and a School psychologist. I was informed by the school psychologist that he would have 2 more test with her, then she needed to have a 2-3 hour interview with me?!?!? Now I just got a message from the schools Diagnostician saying she needs to test "Bubby" and I am not sure why? The more people they have test him, the more confused I am getting. Why would they need a diagnostician to test him now? My best friends daughter didn't have to diagnostician (according to my boyfriend)

I think the not knowing and waiting is what is bothering me the most. What happens if he doesn't get an IEP? Will they still allow him to have gum and do the brushing protocol that he needs for his sensory. Will they take into account all his issues that he has with learning already? With they adapt with the learning styles that I am being told he needs by everyone else. What if he doesn't get Occupational Therapist (OT) and Speech in school since he has private Occupational Therapist (OT) and Speech and is showing progress. Does he still qualify for an IEP? I know the school Occupational Therapist (OT) said that he was doing really well with his Fine Motor skills that there was only a few things that he still needed to work on, but that they would have to introduce major sensory protocols for his teachers and classroom to help him. Would this still happen if he doesn't get an IEP?

I was wondering if anyone has gone thru this and has any suggestions, Ideas or information that might give me a little piece of mind?

Thanks so much!
Jenna

 

[LittleDudesMom]

Good Morning Jenna! You definitely came to the right place.

You asked for IEP consideration last Christmas and they are just now testing over the summer? That's way too long.

Before you worry that services will be pulled vs. provided, etc., check out www.wrightslaw.com

The first site will help you navigate and understand the law (IDEA) and the second will enrich the first by giving you wonderful resources, IEP suggestions, etc.

I would suggest that you spend this time coming up with what you believe he needs and the law allows rather than worrying what their findings will be. I would also suggest you speak with the docs you have been working with to perhaps get their input in writing. My difficult child's very first IEP session including his therapist who lent a real "air of professionalism" to our requests - none were denied. You are legally allowed to review the results of their testing prior to the meeting. Request that in writing.

Arming yourself by understanding your nephew's rights under IDEA and asking questions from a community who has "been there, done that" is great! You are truly on the right path and your nephew is very lucky to have your love and support in his life.

Welcome to the site.

Sharon

 

[TeDo]

Jenna, exactly when did you give them a written request that he be evaluated for an IEP? Legally, they have no more than 90 days from the receipt of the request.

The more "professionals" they have evaluate him the better. Meet with whoever you need to and tell them whatever they need to know ......IF they really are that good. Yes, they will be doing testing, etc over the summer because they are on a federal timeline. All testing needs to be done within 90 days and then you should get a written report of ALL their findings and then a meeting to review the findings with the WHOLE team (and you) and write an IEP if he qualifies. That is a normal process. The key is going to be when they received the request. If it was really right after Christmas, I would maybe mention to the head person that the timeline has expired and that you'd like an explanation as to why it's taking longer than legally allowed.

Also, if the ST and Occupational Therapist (OT) are recommending both in-school and outpatient services, go with it. The more help the better while you have it.

Welcome to our little corner of the world and I admire the way you are making sure Bubby's needs are being met. Too many "parents" don't do that and you're taking all this on. Good for you!!!