Gifted Issues Discussion homepage Forums Twice Exceptional Rollercoaster of Emotions... a 2E parent's ride

Ditto to everything Aculady said - I can't think of anything to add!

Re the specific 100s day activity, sometimes it helps me to also look at an assignment from the point of view of a typical student - which isn't always easy because of course we're seeing it through the eyes of our totally not-typical kids. But - fwiw - I'm guessing that the teacher didn't expect the kids to spell correctly since this is first grade (if I'm remembering correctly). Usually in first grade, my kids only had to spell correctly if they were being quizzed specifically on spelling - in their everyday work they were expected to use their sound spelling however it came out. Also the goal of these types of 100s days activities was the counting and math concepts. So yes, it's frustrating and confusing where to start, what to focus on etc overall, but try to put a simple box around this one project and see that, the overall focus was to come up with ideas how to spend $100, and your dd did that - so she was successful with what mattered for that project.

Re translating that success into actual success in getting things on paper, getting credit for her ideas etc - that's all going to be a journey (at least it has been for us). Ideally it will all be thought through ahead of time, she'll have the appropriate accommodations and instruction needed outlined in her IEP, she'll get the accommodations and instruction etc. Even when you have a great start with a well thought out IEP, you'll find that as the school year goes by you'll learn more about how your dd learns and what she needs at school, and you may have to revise/update the IEP. Many times with our 2e kids it's going to be doubly frustrating because we know their potential and yet they're struggling with such very basic skills in early elementary. Those first school years are most often filled with getting past the disabilities... it may not seem helpful to think of it now, but the focus really does change by late elementary and/or middle school to where your child will start having many more opportunities to shine in their areas of strength and the high-IQ part of their 2e will start to step forward over the challenges of the other e. Just try to remember that this is why you're so lost in all the "how-to"s of accommodating etc right now - you're laying the building blocks for tomorrow, giving your child the chance to eventually soar.

Last thought - keyboarding is so key. If I could do anything differently during those early elementary years, I would have had my ds using a keyboard the minute he entered his first classroom.

Hang in there -

polarbear

ps - do you feel like you have a good IEP in place? Does the IEP have specific goals for reading/writing? Is your dd getting pull-out help?

Thanks Aculady - I know that you home school but how do I approach the public school about doing what seems to obvious? I am thinking that DD needs to be able to orally give her response (i.e. "I have always wanted to live in a castle made of brick so I would use the money to build a castle in my backyard....") and then have the teacher point out *1* thing for her to focus on when writing her answer. (i.e. "Great. Now let's write this and try really hard to make sure that all your letters sit on the line.") First - let her know that she has successfully "completed" the assignment and then give her *1* component of the writing challenges to focus on. Again, this seems obvious to me so why aren't they doing this? Can I expect push back from them if I ask for this?

Activities like the fruit loop stringing should not be assigned to my DD without an aide. Period. She can count 1-100 orally but absolutely cannot manage manipulatives to that degree. She can string a few fruit loops to be part of the assignment but the effort it would take her to string 100? Forget it. Like I said I was there today so she counted and handed them to me to put on her necklace. Is it any wonder that she would have shut down or gone to the nurse if she was faced with this "fun" task on a normal day?

I am now wondering if we may need to ask for an aide to be assigned to her during in class work. I don't know what kind of response we'll get from that. I am also wondering if we will have to look for an out-placement at an LD school down the road.

They looked at me like I was crazy at the last meeting when I mentioned introducing assistive technology as she gets older. Right now they are focusing intently on teaching her to read and write. We bought her a computer and some fun learn to type software so she plays games at home that are teaching her keyboarding skills.

It just seems like she has SO many issues going on she can't be expected to address everything simultaneously. When I asked about having to fill in a grid with numbers 1-100 for homework "What was the objective here? To see if she knew all the numbers or to see if she could write each one?" I was told "It's all important." Yes, it's all important but it took my first grader more than 2 hours to do it. Normally her math homework take 5-10 minutes. What do I have to say to *force* them to differentiate so they are looking at her ability and effort rather than her disability?

I'm afraid we're losing her - she is beginning to shut down. And I really can’t say that I blame her…

Polarbear posted while I was typing - thanks! Yes she is receiving lots and lots (and lots...) of pull out. Help with reading, OT, anxiety and speech, plus push in for math. Between that and specials I doubt asking for an in-class aide would really total that many hours a day. Hmmm... maybe they will go for it.

At the last meeting I told them that I thought first grade was going to be the hardest thing she ever had to do in school because it is focusing on all the things that are so hard for her physically. As she gets into higher grades and content becomes more important school will become much easier for her since that plays to her strengths. Without missing a beat the principal said "Well, that's certainly optimistic of you!" Great... nice way to take the air out of my sails... This is when I mentioned the use of assistive technology and got the dumbfounded looks.

We recently hired an educational advocate who will revisit the IEP at the next meeting. He found some flaws that he thinks need to be addressed. Since I rejected the IEP last week over the hat issue we will hopefully be able to meet again soon.

This is all just SO exhausting, frustrating, demoralizing, etc. I totally sympathize with DD but don't want to feed into it. How can I keep her engaged and optimistic when I am feeling so beaten down?

Pemberley - do you have a local parent advocate who can help you through the IEP process etc? We have an advocate's group which provides advice free of charge, plus a local disability legal aide society who helped us briefly. What you wrote in your last reply are clear, well-thought out strategies - and that's the type of specificity that needs to be in an IEP, basically quantifiable attainable goals that make sense in the overall educational plan for a child. An advocate who understands what should be included in an IEP and how to write the IEP can be a tremendous help.

We also learned through our advocate and local disability legal aide center that how well IEPs are written and enforced varies tremendously from school to school within our district, and we happened to have ds at a school that was one of the most difficult to work with for parents as well as being most resistant to providing services. I think from what you've written your school really wants to try to help your dd, but they may not have the strongest organization when it comes to creating and implementing a good IEP - and an advocate might be really useful.

The other thing that happens with schools and IEPs etc is that there is a school/staff/district agenda that might not have anything to do with your dd - for instance, our district has the Federally required box to check off on the IEP form to show that AT has been discussed/considered for all kids who are on an IEP - but the school district also has a written policy that states that AT isn't provided unless (fill in the blank with some absurd requirement that didn't apply to my ds here)... we spent a lot of energy and effort fighting to get AT included for our ds and ultimately decided we needed to actually provide it rather than rely on the school to provide it. There were other accommodations which we got easily - when *we* asked for them - but the school was not ever going to speak up and offer them up without us asking first. It was basically a situation of, the school knew that legally they couldn't argue against providing the accommodation, but they also didn't want to bother with it, so if a parent didn't know to ask for it, they weren't going to mention it would be helpful even though they knew it was a typical accommodation for the disability and it would be helpful. Again, it helped us to have an advocate to see through all of this and to know what to request.

polarbear

OOPS! I posted my reply while you were replying to me - so I didn't see your reply first! Anyway, rather than erase it - I was replying to your reply to aculady - LOL I'm glad that you've got an advocate!

YIKES about your principal's remark - grrrrrrrrr.....

Re keeping your dd engaged and optimistic while you're feeling beaten and down - no good advice there from me - I'm afraid I failed miserably at that part. DS had a tough tough tough time with elementary school, and it about did him in. I think you and your dd are in a better place though because you found out early on about her challenges and you've got your advocate and you're in there doing everything you can to get her the help and support she needs - so no matter how frustrating it is for her now, she will come out of it all a-ok - really she will.

polarbear

That's probably seared into your soul now. But it won't matter. You'll educate him, you'll get DD into a better place, and he'll never remember that that was what he thought. (He'll probably even get to take credit for how well she's doing later. Oh, well.) Forgive him, and gradually educate him to get him on board with what your DD needs.


Excellent. We have found our advocate to be worth every penny we pay her. It makes the IEP stronger. It takes some load off you, too, which is important.


This is where you have to put on your own oxygen mask before assisting other passengers. You are in a marathon, not a sprint. You need to figure out how to feed your soul, and do that thing, whatever it is. (Exercise class? Trashy novel? Only you know what that thing is, but make it happen at least a few times a week.)

Your DD needs you to be in good shape emotionally, so that you are not done in by the various struggles.

Hang in there.

DeeDee

O-M-G! The last few weeks have been insane - culminating in an IEP meeting yesterday that was a bizarre experience to say the least. Warning - this is long...

DD's headaches were continuing daily and the nurse (she has been discussed at great length on another thread) actually contacted our pediatrician to say that she doesn't believe DD or us about the headaches. She asked the ped to write a letter "outlining all of your concerns." WTH? We never signed any sort of release allowing this sort of contact so it led to a very long meeting with the pediatrician to discuss the whole situation and a letter that turned into a powerful weapon for us.

Simultaneously DD's anxiety was getting ramped up big time. First a staff member, ”Mrs. O”, who DD was very, very close with informed her that she was leaving. This triggered an epic meltdown and increased anxiety that built up until Mrs. O’s final day at the school. The day after this staff member's last day DH was scheduled for surgery so of course DD had a lot of anxiety brewing about that too. Not a good combination for a sensitive kid with anxiety.

At the same time the school was preparing for a ridiculous program that they refer to as "Positive" but just like the color charts that trigger DD's anxiety (also discussed on another thread) this is also a public display of who has been good or bad. Everyone is awarded a large paw shaped sticker ("Patch") and those kids who have a history of bad behavior lose theirs. Yeah, this is positive not punitive right? Anyway, it's harder for the older kids but most K/1 kids earn them. It is rather traumatic for those that don't to walk through the halls, sit through the assembly and hear all the talk about the "Positive" event. A lot of tears that day. As part of the event each specials teacher awards one kid per grade for "demonstrating outstanding effort or excellent behavior as a positive role model." DD won this from the librarian in the fall and music teacher this marking period. There are only 4 awarded and DD has won 2 of them - probably a pretty good indication of how she behaves in school I would think. Also each classroom votes for one kid to get a big award for the same thing - these kids receive a pin, though, and the students in the class vote on who receives it. DD was nominated for the award in her classroom but didn't win. For some reason she then had a meltdown over not winning it. We have no idea what triggered it - probably the result of all the anxiety over DH's surgery and Mrs. O leaving. This happened 1 and 2 days before the departure/surgery.

It was a monumental effort on my part to get DD back on track and feeling positive about school. I somehow managed and we actually had 2 days last week without a visit to the nurse followed by a day where she went and said she just wanted her medicine and to get back to class right away. This is an awesome turn around - right? Well it was until the idiots at the school decided to strip her "patch" because of her meltdown the previous week. Really, a kid with anxiety, and who has an IEP to address it - not to mention who has won 2 awards for her outstanding behavior and been nominated for the big award for her class, is now supposed to be the child shamed. Not just a chart in her classroom - now she has to walk around the school with the badge of dishonor. Really? Seriously?

Our education consultant had met with the district the day before to work out how to get the situation over the hat and ibuprofen to settle down. The director of special services for the town assured our consultant that he would make sure the school understood that they needed to back off and then the next day they pull this. Really?

That night DD decides that this means that she will have to repeat first grade so she can "learn not to cry." The only thing we can think to do is remove her from school the day of the awards ceremony because we don't see any possible way for her to successfully navigate this situation without a meltdown. I have a blow up with the teacher when she tells me "It was a close call but we decided we couldn't in good conscience have the other kids in the class see her receive a patch when they saw her meltdown." Really? They saw her previous meltdown and you then nominated her as the best role model in the class. If one was so egregious why wasn't the other? The only difference we can see is that we hired a consultant and they are retaliating against DD for it.

So we have our IEP meeting yesterday and the director of special services was there. He had clearly told his team to knock it off and agree to whatever we asked for. The few times the iron-fisted principal tried to be obstructionist he shut her down. I asked for and received a change in lighting in her part of the classroom, for her to be provided access to the outdoors to try to help with her headaches, differentiation including having her provide her responses orally whenever possible, increased speech therapy services, etc. The district will be paying for the new neuropsych eval and consult with a child psychiatrist about how to better address her anxiety issues. The nurse was the only one who didn't play nice. She put on a show like a petulant child and made clear to everyone in the room what we have been experiencing.

After the meeting we had our consultant speak with the director of special services again - about the nurse and the nonsense they pulled with the whole "Positive" situation. He made clear that as far as we are concerned they had violated both the spirit and the terms of her IEP, had intentionally triggered her anxiety without giving any thought to how they would manage her the day of the event and prevented her from having access to her Free and Appropriate Public Education in the process. The district has promised a full and complete investigation. In the meantime, hopefully, they will go back to handling her as gently as possible.

So after weeks of very little sleep, high levels of anxiety and tears on more than one occasion I think (hope) we are back on the right track. I asked the consultant why they seemed to have caved and given us everything we asked for - was it because they realized we were right and that they had behaved badly? "Maybe. Either that or they are just afraid of you"

Let's hear it for the power of being a mama bear protecting your cub!

After yesterday, YOU deserve an awards ceremony. Kudos for advocating so well for your kiddo.

Oh Pemberley! I can't believe how the school has treated your dd - just beyond belief!!! I am so glad your dd's dr was supportive and that the school district rep was also supportive and didn't just blindly back up the school staff.

I hope this is the beginning of *much* better times for your dd in school - sending you both a big hug!

polarbear

ps - you have done an *amazing* job of advocating for your dd!

You deserve an award for not punching that darned nurse in the face yet.