nothing like ending an IEP in tears to start the day out right

by debi9kids on February 29, 2012

As much as I have “come to terms” with Will’s diagnosis, it doesn’t mean that I don’t still have my moments when it just really hurts.
Last week, I attended an open house for kindergarten for Emma at a local charter school and felt my heart sink a little.
This week I attended Will’s IEP for his “kindergarten plan” and I left crying.

And, honestly, not all that much was discussed, aside from listening to Will’s pre-k teachers talk about what a happy little guy my son is.This, I know 😉 They talked about how he sings lots of songs for them, how sweet his voice is, how much he’s started talking, his silly “stories” he tells, and how much he’s grown since they first started working with him.All things I know and love about Will and things I’m so pleased to see happening… things I never thought he’d ever accomplish.And while the focus at first was about all of the wonderful things Will is now doing, it quickly turned to a list of the things that he isn’t.
And a list of tests that need to be run.
And the need to determine who best can meet his extensive (their words) needs.And it’s just hard to hear,
because I spend so much time focusing on the positive,
focusing on all of the things that make me thankful for the child that Will is….and not think about the child that he’s not.

The bottom line is that I’m not sure what is right for Will in school right now.
But I do know my head,
my heart,
my soul
hurt thinking about making the wrong choice.

It’s a huge process,
a huge decision,
one not made lightly.

And, so, I cried.

I cried telling them that it’s most important to me that the person who cares for him outside of my home needs to love their job,
needs to love teaching special needs children,
and needs to understand that Will has autism, autism does not have Will.I think they got it.
Time will tell…
(and I’ll be watching like a hawk)

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{ 12 comments… read them below or add one }

courtney kay February 29, 2012 at 6:46 pm

mama bears are the best advocates… hugs!

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Elyse February 29, 2012 at 6:53 pm

First of all, sending hugs to you. Secondly, what is on paper and what you see are meant to be different since he's in two different environments. Home is his sanctuary and his safe place. School can be but it's not the same. Hearing what he can't do is hard but necessary so that Kindergarten and his team/school can be fit HIS needs.

Sending love & hugs!

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JulieBouf February 29, 2012 at 7:06 pm

Not knowing is the hardest. Undeniably all parents struggle concerning whether decisions they make will benefit their children in the future…but I think the IEP process has been THE HARDEST parenting issue for me to date. Deciding whether to push for more intervention or to allow Katie to struggle before pushing for more intervention. Wondering what if. Just thinking about it and writing this makes me nauseous and want to cry. Sounds like maybe they're pushing for more intervention with Will then you would have wanted/expected? But even when it's the opposite, the second guessing and not knowing tears me up.

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Tori aka Farm Marm February 29, 2012 at 7:21 pm

I get it. I hear you! I hate going to my son's IEP's. I always want to hear about his progress, but it's so frickin' slow. I always walk away wondering…will he ever be any kind of normal? My son doesn't have autism..that we know of, but we do think he might have cerebral palsy. Either way, whatever the case, he will probably never be 100% normal and that just kills my heart. He is the cutest, sweetest, loving-est boy I have ever had..I have five. I hate seeing him in a "normal" situation, and having the other kids notice that he is different. I hate seeing his younger brother pass him up in so many areas. They are two years apart, yet the younger one seems older, a lot of times. I pray. That's all I can do, when I've done all I can. =) My heart goes out to you!

p.s. I found you through Jayme over at TaterTwins <3

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Pol February 29, 2012 at 8:09 pm

Oh Debi,

I sit in meetings as a professional discussing other peoples children and their needs.

And then I go to my own son's meetings and hear about him. How he is "gorgeous" – they always say gorgeous. He's polite and enthusiastic. And he has "complex" needs. ASD, ADHD and coordination problems/dyspraxia.

I cried at every meeting for years. I don't usually cry now – but it still really hurts.

Keep telling everyone and anyone what your hopes and dreams for Will are – it doesn't get easier – but we get stronger.

Hugs.

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Renata February 29, 2012 at 11:21 pm

Hi Debi

Pray for guidance as to the best teacher for Will ~ I'm sure God will send the right person. You are doing a wonderful job! He is such a precious boy & a blessing to you guys!

((HUGS))

RenataXO

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Barbara Manatee March 1, 2012 at 1:26 am

You know I love Will and all you do for him, but I just have to share from a teacher's perspective, how an IEP has to be. I really do hate this about them, because I hate how negative them end up seeming – but IEPs HAVE to state all that they CAN'T do to be able to justify the need for Special Education services. For every goal and objective, it needs to be stated and explained what the child is NOT doing and why we have to work on that goal. I hate writing what we call the PLAAFP (Present Level of Academic and Functional Performance)…its the big statement in which every goal is identified by stating what the child can NOT do. It HAS to be written in the negative b/c if we only stated what he CAN do…it would appear (on that little snapshot of him on paper) as if there was no need for assistance.

I am sure every state and district is a little different but IEPs are such a small slice of what we as educators and you as parents know about a child. If he's moving onto a new school/classroom/teacher, they have to be as detailed as they can on his needs and abilities so the receiving teacher has a clear picture of what he can and cannot do.

I can only imagine how much it sucks to read that document and see those negative statements glaring at you. Please understand they are NOT put there because that's all the teacher sees…but because that's how it has to be written, per IEP law.

I hope and pray they help set a good path for Will for the rest of this year and next and you have a say in where he is at next year. Transitioning will be so important for him – if you can do a social story with pictures of his new teachers next year and take him to visit later this spring, that would be so helpful.

As always – keep advocating for him like you do! They WILL see the wonderful lil boy that is Will!! Autism or not! 🙂

*hugs*

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Holly March 1, 2012 at 11:30 am

I can relate to what you are feeling, I am still not sure that I am doing all that is right for Brian. Fortunately the Special Ed. person that I have been dealing with has been great. I have broken down in tears more than once in my quest to do what is right for Brian, I pray continually that God will show me the right path for Brian. I wish HE would make it just a little bit clearer so that I know if I am making the right decisions. Any way, all that you or I can do is make the best decisions that we know how and hope that God will make things work our for our kids. Best of luck to you and let me know if there is anything that you need from me.

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Julia March 2, 2012 at 3:42 am

Hi, was recommended to your blog by Cat. We have just recently found out about our son's diagnosis. I went to a school open day on Wednesday night and also just cried all the time. For now my husband and I are taking it one day at a time.

"Will has autism, autism does not have Will."

Loved this statement SO MUCH. Thank you.

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debi9kids March 2, 2012 at 3:51 am

Hi Julia. Nice to "meet" you.
Cat told me about you. Sorry you're now in the same boat.
The good news is, it does get "easier" to accept and figure out.
It never gets fixed, but it does get better.

Please check out the blog I linked to in this post: http://whosays8isenough.org/2012/03/01/hey-girl-r
My friend Sunday has 2 boys on the spectrum and one is 10. So, she's even further along on the diagnosis and dealing. I get SO many resources from her and friends of hers.

Please also feel free to email me any time. It helps to vent and not feel so…isolated.

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Beth Zimmerman March 2, 2012 at 3:30 pm

Hugs! For you AND for Will … assuming he's okay with that! Love you, Debi!

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debi9kids March 2, 2012 at 3:52 pm

yep. Will loves hugs 🙂

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