Tuesday, December 3, 2013

What I Want

When I get hooked up with someone who's looking for help with their child's IEP, the first thing I'm like after hearing their story is, "whoa, stop. wait. Calm down, your emotions are getting in the way." (yeah, me. I know, right?) Today, I got hooked up with someone who's school is trying to mainstream their soon to be kindergartener with no supports. In telling me their story, they asked something along the lines of, is it just me? or, does everyone have to fight because they have no choice? or something like that and my answer was, *snort* you don't read my blog, do you? ;) but then came the important part, my point in retelling this...

They apologized. No time, busy, busy, you know, the whole parenting thing. and I told them not to apologize, especially because with them being new to this whole IEP thing, I don't think I'd suggest reading my blog.

*slams on the brakes*

*looks around*

*Did I just say that?*

*shit.*

I think I just blew my entire reason for blogging right out of the water. But, seriously, if you are getting ready to go visit Europe, I would not suggest watching Hostel before you go. it's like that. exactly like that.

I don't share my horror stories to scare you or to cause you unnecessary worry. I do not share my stories for you to pity me- when I'm having a poor me moment, I will tell you so- or to for you to tell me how sorry you are that I have to go through this. I'm not sorry. It'll be worth it when my children get what they need to reach their full potential. I share my stories- horror and otherwise- for a lot of reasons.

I don't want you to be scared, but I want you to be prepared.

I want you to know that you are not alone. That is very important. When you sit there and face your "team" feeling like you are on your own... no, you're not. You have a whole community of parents who are right there with you. When you feel like you are fighting a battle that you can't win, we are fighting right beside you. You have our support and our understanding just the same as we have yours. When you wonder if the fight is worth it, when you wonder if there is any point, we are there to encourage you to keep going, to let you know that it's not just you. You are not alone. We are all sitting in that seat with you. We fight the same battles, we cry the same tears- happy or sad or angry- we feel it just the same. On your journey, you are never alone. It's never just you.

I want you to be aware that there is danger in blind trust. You can trust your team to a certain extent but never rely on them as your only source of information, as your only resource. Trust your team to have the knowledge, the experience, and the willingness to help your child, but make sure you check what they are saying. Ask for data, ask for explanations, ask for second opinions. Nobody knows everything, not even in their own field, and you know your child better than anyone else does.

I want you to be informed. Fully informed. On your child, their disability, their needs, their educational plan, available services... Know what you want and know how to get it. There is a very good reason autism moms and dads are generally considered to be either batshit insane or ferocious mama/papa bears... or both... those stereotypes were earned because if we do not fight for our children, no one else will, and usually, we have to fight to be able to fight in the first place. Never ending cycle. The best path is to ask nicely and compromise, to work together for your child's best interest but that won't always be possible.

I want you to know and understand your rights, your child's rights. I want you to know and understand that, while I doubt the school intentionally violates your rights (mostly. some do.), there is a good chance that they don't know or understand your rights. If they don't know your rights, and you don't know your rights, who is left to protect and enforce your child's rights?

I want you to know that you have options, you have tools. You don't have to agree with everything the team suggests. I want you to know that you are a vital member of your child's team. You can make suggestions, you can ask for goals. You can help write the IEP. You have a voice. You are not sitting in that chair completely powerless as judgment is handed down, you are more than an afterthought, you are your child's fiercest advocate. Even if you are not invited in as a member of the team, you have to take your place. Let them know that you are ready, you are willing, and that you insist on being an active participant.

I want you to know that it gets hard, there will be times that you just want to sit and cry because you just can't do it but then you will get up and do it anyway because it is worth it. I want you to look at your child and know they are worth every bit of it. I want you to know that you can do this.

1 comment:

  1. I wish you and your blog were around when my brothers were small and my mom was begging and crying and explaining and reflecting and moving neighborhoods looking for new schools in order to do it all again and again. Always feeling alone.

    That's what I want. It's not useful to wish so badly that you could rewind time and give your loved ones the things that are available now. The things you know now. I know that. But sometimes I just wish....

    Instead I share and tell everyone I know NOW about blogs like yours, words like my mom's, ideas that grow out of our autism world. I have to believe that's enough, because it's what we can do.

    Thank-you Mama, for helping families know that they aren't alone, that it IS hard but also necessary, and that it absolutely is worth it!!! xoxo

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