Wednesday, June 8, 2011

WHAT special needs?

I don't think there is any secret that Genea has special needs. Well, maybe it's a secret from her school since they don't want her on an IEP (Individual Education Plan, key to getting special education funding and services). My daughter has special needs, just as if she had dyslexia or Down's syndrome. You can't see her needs and it is difficult to test for her needs but rest assured they are there.

I have had several meetings with her school these past few years. Mostly we all talk and all agree that she needs extra, extra help. Her fantastic teachers have accommodated her so far, but since she is "unofficial", there is a limit to what they can do. We end the meetings with testing suggestions and I give them my lengthy list of diagnosis du jour, fully expecting that somewhere along the line we will hit on something that qualifies her.

We have  not. Yet.

I have given my child "mental health" excuse notes. Such as, she was wiped out from an hour of tantrums when The Crazy in her head exploded and could not finish her homework. She will get the work done, oh yes she will, but it may not be on time and she may be docked points and that's okay, we will live with it. Sometimes she goes manic, and there will be days where she is like a ping pong ball with hair and there is no way she will get homework done. She will try and we will set her up for it, but it is not going to be right and no one can read it. Just as if she had cystic fibrosis and needed time for her breathing treatments, she has times where her mental instability holds her back from the standard curriculum. One time this year, during a particularly rough patch I pulled her out of school when the teacher called to let me know how much she was struggling. It is notable that this was the only day she missed all year- seriously. She has not missed a single day this year being physically sick!

It's tricky- whoa is it tricky, and I'm sure I mess it up plenty. There are typical childhood brat moments, Reactive Attachment Disorder moments, and Bipolar moments. It's the Bipolar moments when I take control and try to wipe out the world for her. She needs a small safe place to work through it all. The RAD moments just have to blow over and the brat moments are ignored.

So anyway, I was talking to my mom a few days ago and she mentioned something about "and of course Genea has special needs". And my response was...... WHAT special needs HMMM? Okay, that response was in my head but I bristled up and felt, not offended, but more like, hey!

Why, when I have spent 3 years trying to convince the school system that she has special needs, why would I feel that Mommy Protection thing fire up? It's even more strange because I have spent 4 years trying to convince my mother that Genea has a very hard time. My mom has come from the angle of "all kids do that" for a long time, it surely helps that idea when you are 150 miles away from your granddaughter. If you rarely see it, it's easy to imagine that "all kids do that". I should be relieved, even happy, that she finally see's it. I guess I am. Sort of. Maybe because she spent so much time rallying for the normal, I felt like maybe we could still get there. Now, if she sees the special needs too, they've become obvious.

(ps, vote)!

Updated    I don't usually post things I have written late at night, I hold off until the morning when I can read thru and be sure I am making sense to myself!
I feel conflicted on the issue of Genea's disabilities. Sometimes I feel like I have to bonk people on the head to make them understand what is going on that can't be seen. Since there is nothing obvious looking at her, often I find myself laying it all out there in the hopes that someone will get it. When they don't, it's frustrating. However, I also don't like the idea that someone might look at her and think.... wow, what's wrong with her? With that often comes pity that we do not need. Also, she is very much the type of child that rises to the occasion. If the bar is set high, she will reach it. If it is set lower, and expectations are lowered because she is "special", there is no doubt she will react. I know (for a fact!) that if she thinks she has an "out" she will use it, needed or not. She can learn and indeed she learns well. It amazes me sometimes, all that she takes in. It was sort of alarming and kind of depressing to realize that her issues may be more apparent than I thought. I am way to close to see these things clearly anymore. I want people to know, and she needs people to understand, that her abilities are affected by her history and mental health. I don't wish her to be treated differently because of it.

See? Conflicted. I hope this makes sense, maybe I should pull this down. Maybe it won't make sense at all because I am saying 2 different things that don't match up and probably can't be achieved. That's what I mean. Maybe I am overthinking, maybe feelings aren't logical and it will never be clear.


  1. Ignoring special needs does not make them go away. Hope gets a 1:8:2 class and the only diagnosis she carries is RAD. Have you tried bringing a professional advocate or an education lawyer with you. They are expensive, but they work.

  2. My son does have some developmental delays that he receives preschool services for, however, the needs that affect our day-to-day lives the most are his emotional needs and attachment issues. Those are the ones that some people don't really believe (because these behaviors occur primarily with ME) and it is frustrating.
    I do see where you're coming from here. In some ways, I want others to acknowledge his struggles and sympathize with me over them. At other times, I want them to see him as a "regular" kid. It's very hard.

  3. Stopped by and read your blog from the circle of moms! Just wanted to say HI!

  4. Our daughter came to us with an IEP for emotional disabilities. Would that be an option? She's in regular classes and hasn't needed any emotional or behavioral supports in the year she's been with us, but it feels good to have it in place in case it does. It does give her extra time on tests since time limits cause her anxiety.

  5. I totally know what you mean, having invisible disabilities myself. I battle between wanting people to understand that there are some things I just can't do as well as other people, or some "weird" or "unacceptable" behaviors I have that are really part of an invisible diagnosis I live with every day, and people just wanting me to treat me as me rather than my diagnosis. I knew I had depression for years before I was officially diagnosed. When I was officially diagnosed I thought I was happy and validated. I left and called my husband...and burst into tears. Others acknowledging it makes it real in a different way. I think it's normal to grieve that even while celebrating it.

    That was long and disjointed. So are the feelings :-P Hopefully it made sense.

  6. Have you ever read the book From Emotions to Advocacy by Peter Wright. It is great and can help you in your fight to get your daughter the services she deserves.

  7. its the parts people cant see, its the parts she only shows at home, its the parts that are so sick and hurt that only the very well experienced see that need the most support.i so understand you and i walk the line all the time, i want people to see so they can help and yet the acknowledgement of them makes my stomach fall to my toes.....i dont have any answers just wanted to thank you for your words and being willing to sort them out before us so we can be more comfortable with our own relationship with the conflictand know that it is human and normal when loving children with trauma and mental illness. lisa

  8. I get it! You don't want anything to be wrong, but you pretty much know there is. Then when someone else acknowledges it, it becomes that more real.

    It gets extra confusing when you know you need validation, and get frustrated when you don't get it.

    I find dealing with anything and the school system sucks.

  9. I think for me it's that I don't see it as being anything "wrong"; I think she's perfect and utterly heroic and amazing. I don't want anyone saying that she is less that that. I just see it as the rest of the world needing to have some understanding and show some empathy to my little bird.

  10. the schools resisted emotionally disturbed as a label for my son with bipolar. that meant that for YEARS i was stuck looking like a helicopter mom who just wanted her kid to get an A. NOT. i just wanted him to get a chance. after a bazillion and 3 tests, they finally accepted that, hey, yeah--the diagnosis made by those doctors might actually be affecting his work at school.

    the label they insisted on, though, was OHI--other health impaired.

    i, too, kept him home from time to time to help him pull it together. and catch up. he was expending so much energy holding it together at school that he sometimes had nothing left for work.

    i hear you, essie. it sucks marbles trying to get help for our kids. keep pushing!

  11. When my RADish who is now 18, was in school, I had the worst time with teachers not giving into the manipulation. Made my head spin. The one thing though, he did have an IEP and they adjusted it behaviorally, not academically. Example: He was most likely going to explode in the hallway between classes if he felt someone bumped into him deliberately, etc... So, it was written in his IEP that he was to change classes 5 minutes prior the end of class. It kept him out of the hallway during those crowded moments. It took awhile but I held my ground and explained to them that I was no longer going to come to the school every day to pick him up after a meltdown when they weren't willing to work to fix it. If they won't listen I would get a mediator. It sucks that you have to fight to get her the support she needs. I prefer the term extraordinary to special needs. It has such a positive tone.

  12. If your daughter is diagnosed as bipolar she automatically qualifies for an IEP under OHI (Other Health Impaired) with a note from her doctor stating the diagnosis.

  13. Good points and interesting comments!
    Meg- I was NOT aware of that!
    Kate, you're right.

    There are some great and helpful insights in here. I REALLY appreciate it, I really do. My kid is the one who falls thru every crack it seems.

  14. RAD is one of those things that pretty much no one is going to get except the parents sadly.

    I have given up honestly.

  15. It makes PERFECT sense and I am right there with you!

  16. i felt a lot of similar-sounding conflicting emotions while we were adopting - hey, *I* can say this is ridiculously hard but *YOU* had better not!

    For me I think it came down to how confusing the intersection is between 'difficult' and 'worthwhile'. I want people to see my kids (my imaginary kids, at that stage) as being JUST as worthwhile as 'normal' kids, and that's why I bristled when other people talked about how awful it must be to adopt. But I *also* wanted them to acknowledge that the process was more difficult. Trying to make people understand that it was much more difficult, but no less worthwhile felt impossible. I wonder if there are similar emotions at play with special needs. But I could be totally wrong.

  17. LOVE this post. I feel your pain. We got our daughter qualified under "emotional and social delays". But she's only in preschool. I shudder to think what our fight's going to be like as she gets older and is supposed to "get over it".

    I also see the same thing with extended family. They just don't get it, since our daughter is "just a kid" and acts like "such a sweet girl" when in the company of those she's not around all the time.

    It's a Catch 22, isn't it?


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