IEP update

it's done. it went amazing!! i'm home wanting to scream to other parents how important it is to do your research, know your stuff, be organized and be prepared!! advocate, advocate, advocate!! it definitely paid off today.

last night, i was pretty spun up and decided to waste the night away watching mindless TV instead of spinning my wheels any further doing individualized education program (IEP) prep. so i woke up at 5:30 AM, which gave me about two hours to continue my research and preparation (although i already have two large binders and three ziploc bags of supporting documents and laws gathered over the 11 years of previous IEP prep).

some key tips -- it was HUGE to have the IEP draft in advance. i was able to read and understand the IEP and then write my notes and thoughts directly onto the draft. this was especially important because i wasn't that familiar with the florida IEP outline.

i've been trying to add a communication | socialization goal for kiele for a long time now and so this time, i researched and wrote a goal and objectives that i could present to the team. i also had rehearsed how i was going to introduce the need. while there was some resistance and other suggestions by a couple members of the team at first, i just kept sharing that i wasn't comfortable with this or that...and finally they agreed to make a separate goal.

kiele is going into high school next year and it made no sense to me that a high school representative would not be present at the IEP meeting. i shared with the case manager that if she could not find a rep that could attend and speak on behalf of the school, we would have to reschedule the meeting for another day. i'm SO GRATEFUL that i did that because i met the most amazing person, who gets it and was instrumental in today's IEP success!!  and i now have an awesome contact at the high school (exactly what i needed), who also gave me a number of other important contact names and email addresses.

when your child is old enough, let her attend the IEP meetings. kiele discussed problems and issues she had throughout the year, which resulted in three additional items being added to the IEP. it also alerted the high school rep (and myself) to things she should pay special attention to next year.

i hope this information will help someone out there. parents who have been there and done that have so much to offer and share with others.  you are NOT alone!! one day, i hope to share on a greater level (national conference) but for now, my blog will have to do. if you know of anyone that might benefit from my IEP thoughts, please forward this to them.

as always, feel free to post questions in the comment section and i'll be happy to answer.

i close with this, because this is how i feel at this moment.

or maybe this because i'm so giddy with relief, i almost feel like i could go outside and do a cartwheel right now.

IEPs suck

there, i publicly said it.  and having to do them in five different states and nine different schools sucks that much more. sorry for my frankness here but i think most parents, who have gone through the process, would agree that individual education plans (IEPs) just plain 'ole suck. if you don't know what an IEP is, consider yourself lucky!! i educators understand the anxiety that an IEP produces for parents? i mean REALLY understand? maybe only those few, who happen to have a child, with a disability, themselves. i get teary just thinking about the IEP, let alone sitting at the, what's suppose to be, an equal team member.

i have made myself about crazy as i prepare for kiele's IEP tomorrow morning.  i sit here...cautiously optimistic and then that other side creeps in and says, they're going to fuck with you. be prepared -- and then i begin to freak out. yes, i've done a great job thus far. i know that. but i have three years left. and i can't let anything get screwed up. kiele's come too far. and she's doing too amazing. i've simply done what i was supposed to do and must continue to do so until she is ready to advocate for herself (and hopefully by that time, i will have taught her well).

it's just so HARD.

my advice to mommas of children with disabilities or needs, who are dealing with the special education system... know your stuff. and the laws. research. research. and more research. find other parents with children with a similar disability... kiele absolutely would not be where she is today without the knowledge and insight i gained from other parents. there can be a wealth of information in organizations and forums (check them out). stay strong. know that only YOU will truly advocate for your child... and that you know your child best. fight for what's appropriate (and know the buzz words). find that one person within the educational system who is on your side... who is willing to fight the system and risk their career if it's the right (or shall i say appropriate) thing to do. listen to others but know that your child's situation is absolutely unique.

years ago, i thought that i would pursue a career in special ed advocacy. who knows...i still might. along with photography, it's something that i'm deeply passionate about.

thank you maura and diane.  the two of you taught me everything i know and created the advocacy monster that i am today.  love you both dearly!!

as i go into my 11th IEP meeting, i can't help but reminisce...

shortly after kiele was diagnosed with a progressive hearing impairment (age 3 | may 2000)

kiele's cochlear implant surgery, post-op day two (age 6 | sep 2003)

her treasures. an image from when i first started photography (age 9 | 2006)

on her birthday (age 14 | couple weeks ago)