First IEP meeting

Fragile X Syndrome
#1

Hey! This is Penny, again, and I have my first IEP meeting next Monday. Is there any advice ya’ll could give me? Our son, Jonah (age 3), is starting preschool with the public school system. He is a full mutation, over 300 repeats, and still recieves OT, PT and speech through a private provider. Should I tell the public school system that? Should I go ahead and recieve services through the school system? Anything I should be careful of?? Oh, any help would be so appreciated… I know a lot of you Moms/Dads have been through this… so help… please.

PennyC

#2

Tell them everything you know. That helps them figure out the best way to work with him. And relax!!! They know what they are doing, just say something if something doesn’t sound right to you. And any free therapy you can get is good, so use it.
JES

#3

Hi Penny, The school has your child in their best interest. As far as therapies, #1 your therapists can attend the IEP meetings at your request. #2 don’t settle, if your child needs more or less that’s a joint decision…not only theirs to make. And now that your child is in the “school system” it’s the school systems responsibility to provide the services. I live in NYS so far all the IEP meetings I’ve attended have gone well. Nothing has ever been denied. I guess maybe sit down and think about all areas your son needs help with. Think of some goals in each area that you would like to see achieved. (for example…my daughters’ goal for speech for along time was just to say mom. well at alittle over five she finally has achieved it! . Remember, whatever goes on his IEP can always be adjusted, you don’t have to wait for the next IEP meeting…you can request one at any time. I hope this helps, if you have any questions you need answered ask again!

#4

Sorry to jump in here, but what is IEP? I have a 2 year old with Fragile X and although still a year or two away, schooling concerns are already on our mind.

#5

OK IEP means Individualized Education Program. I’m not sure what state you live in but if you have a 2 yr old w fragile x does he/she get services? In NYS at that young age services are provided thru the health dept. then depending on when you’re child turns 3 they start the transition into the education dept. An IEP lists general facts about your child, what tests have been done (results), what recommendations for services and specific goals for your child. I hope this helps, but if you have anymore questions feel free to ask!

#6

Hey! Sorry I haven’t been on the computer for awhile… we got Jonah’s results back from his preschool evaluation. It was a little worse than we had hoped for, because he scored a “well below average” on almost everything. :-(. But, on a good note- he more than qualified for preschool and the meeting is Monday, his 3rd birthday, and we will be doing the first IEP that day and he should be starting school by the following Monday. We are still going to get additional therapy (OT, PT and speech) from the private sector. I hope everyone is having a great week!

PennyC

#7

Good sites to learn and you need to learn because the school will never give your child everything that is appropriate and you will probably need to ask and ask again. Learn the laws and ways to advocate and how not to be blind sided. You rchild should be getting speech,OT and PT through school and it should be the amount he or she needs not what they have stafing to provide.

My son gets speech 2 times per week (1 hr), PT 1 time per week(1 hr) and OT (45 minutes). He has a one on one aide as well.

Good luck and fight for your rights.

http://kidstogether.org/IEP.htm

http://www.wrightslaw.com (read this front to back)

Mary

PennyC fragilex-cpt6150@lists.careplace.com wrote:

#8

My daughter gets speech four times a week, 2 in group and 2 individual…she gets OT 3x a week. She does not receive PT at all but she does have her own one on one aide for the morning and in the afternoon she shares the other 2 aides in the classroom. Kamryn just started kindergarden in NYS. I’ve never had any problems getting her the services shes needs. When she first transitioned from early intervention to the school system we even continued to get OT at home and at school because she needed the extra. The chairman of the committee wasn’t sure if they could do it, but it was approved. Just don’t back down, if you feel your child needs more or less SPEAK UP, you’re the only one who will for your child!

#9

Hey! Well, we had our meeting yesteday, but Jonah isn’t starting preschool. After sitting through all of the evaluation report, about an hour or so, they tell me that I will have to send my son to the next county over. They don’t have any openings in our county, so I would need to put him on a bus (or drive), and his school would be about 14 miles away. So, we turned down the preschool and entered our names on a waiting list for an available spot in our county. We did write an IEP for speech, which he will be recieving twice a week at the our elementary. He still receiving OT, PT and speech through private providers, and a gymnastic class, so I think he will alright to wait for the preschool opening. He won’t be starting kindergarten for another 3 years, so… I hope we made the correct decision? Thanks for all of the great advice! I entered the meeting with lots of notes and very prepared.

PennyC

#10

To: brenrose27@hotmail.com> From: fragilex-cpt6150@lists.careplace.com> Subject: [fragilex] First IEP meeting> Date: Mon, 1 Oct 2007 11:14:17 -0400> >

#11

To: brenrose27@hotmail.com> From: fragilex-cpt6150@lists.careplace.com> Subject: Re: [fragilex] First IEP meeting> Date: Tue, 2 Oct 2007 14:02:15 -0400> >

#12

I would like to say Hello first of all. I am new here and I am gonna be attending my boy’s IEP meeting in a couple of weeks. It has taken me quite a while to get where I am now.
So, the whole idea that the school has the children’s best interest, is not always true.
My boy’s receive OT 3 times a week and they will be starting with a new speech therapist very soon and that will be 2 times a week. This is all private. The pre-school that they will be going to has a more at 4 program which places them in a class with typically developing kids and kids with special needs. I feel that this is a good opportunity for them to interact with other kids their age who are typically developing and special needs kids their age too.
I am hoping that all goes well with the meeting. I plan to bring my mom and my service coordinator who is with the health dept. where I live. My mom is a special ed teacher in a elementary school. So, that is gonna be a lot of help to me. I feel so lost right now. Like I am in a cloud, but I have some time to get things together and prepare myself for a long meeting. I have 2 to go through in one day. I should be used to that by now.