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Hi All:

It seems that every few months I need to check in for a pep talk from other parents who can understand what we're going through. In the past week or so we filed a complaint with the Dept of Education, met with the superintendent and had DD's psychologist do a classroom observation. Within 48 hours of the observation the district started to provide some of the things we have been making a fuss about for the past 3-4 months. We don't know what finally caused them to respond - probably a combination of the 3 things. Yesterday our consultant, who we really felt had unfortunately come to the end of his usefulness for our situation, called to say that he is suddenly reenergized and believes that he is ready to lead us to whatever our final conclusion will be. We have a meeting next week about finally adding in assistive technology and if the district can't provide a more appropriate classroom for next year we have a plan to move forward seeking OOD placement.

All of this is a remarkable amount of progress that all seems to be coming together at the same time. Unfortunately in order to get to this point it has been months of stress and constant advocacy. I have come to realize just how much of a toll this has taken on me. Psychologically, emotionally, intellectually - even physically. And the worst part is when you feel like you can't go on any longer you don't have the option of stopping. It seems that any time you decide to give yourself a bit of a break there is a sudden crisis that needs immediate attention. It's all so exhausting - and yet you have to keep going. There is no choice.

Tonight I had an experience that showed me just how much DD's life has changed in the last few years. Where she was once the little superstar - blowing everyone away with her personality and abilities at the age of 3 or 4 - she is now the physically awkward, sensitive 8 year old that needs very special TLC. I saw clearly that her confidence in herself has been shaken, and it deserves to have been. She is still willing to take risks but is no longer the resilient little "Tigger" who bounced right back up if something went wrong.

So I need a pep talk. I foolishly read more about NLD (she is diagnosed as "NLD-ish" so not all applies to her - at least that is what we hope) last night and it is just SO depressing. If the diagnosis is accurate all of these challenges will become more pronounced as she gets older. The discrepancy between her highs and lows will become more pronounced. Her disabilities will be increasingly more noticeable at school. I am afraid my cheerful, confident little girl will be gone if I can't get her what she needs. Unfortunately no one seems to be clear on just what those needs really are and I am running out of ways to make it happen for her.

Any BTDT experiences to share?

I am sorry but I don't have any BTDT words of wisdom but I wanted to say how I impressed I am with your dedication and obvious devotion to your DD.

I am in awe of your level of advocacy and only hope that I would be as strong if it came to that.

I wish I had more to say than Good Luck but I sincerely mean that! I'll always be happy to participate in any pep talk, at least from the cheering section!

Hi Pemberley,


Well, that's good. You are getting results; I'm sorry that the process takes so much, but you are DOING IT.


I'm glad you are on top of this; it seems like a reasonable strategy, executed at a reasonable pace. And I'm glad the advocate is back in the game to support you.


I hear you. And yet I can report that over years of this aggravation, one does develop a sense of pride in the work: I know that my kid would have gotten a poor education (or none) were it not for my efforts, and yet here he is getting a really very good education, and being successful, and being recognized for his achievements. The work of it was his, but it was also mine, and I'm proud of us.

(Of course, I am also tired of dealing with it all, but I have developed enough expertise and enough of a support team that an IEP meeting does not keep me up nights any more. It's infinitely better for me now than it was five years ago.)


But she will also grow and change. She will not always be this fragile. She will grow into understanding what her personal work-arounds are for her disabilities, and understanding what she can do.

Pemb, I met a person who now works as a consultant primarily for people with ADHD and other executive function issues. The consultant has several learning disabilities herself, I believe including dyslexia. She has a personal assistant to help her manage her business effectively; her computer use is exclusively through Dragon Dictate and her assistant. What impressed me is that she is a confident, highly successful and respected professional. It was so satisfying to see.

Schools are more cookie-cutter than the world is; I think your DD will find that the world welcomes her skills even if school is difficult. Early elementary is hard; you've started from scratch figuring out the disabilities. You will continue to teach and find work-arounds that make things better over time and she will learn to manage more and more for herself.


Those descriptions might be of a typical course for a typical NLD child. But they probably DON'T describe very well a child as intelligent as yours, with a parent as dedicated as you providing a first-class education. Therapies work. Teaching works. Children learn and grow. Disability is a pain in the neck, but it is possible to become less disabled by one's disability over time through the development of good strategies for problem-solving and coping.


Is that because the NLD question is still unsettled? It did seem to me that you understood, at least, what she would need for starters to be successful in school. Are you finding that the accommodations aren't enough (when the school actually does them)? Or is this more the existential feeling that there is a bottomless pit of needs that you will never plumb the depths of?

I guess what I can really say is that yes, it's tough, and it gets better. You won't believe the person you'll be a few years from now; many things will be different, and you will have improved your DD's life by your efforts.

I have a day job, but this tough advocacy job is my most meaningful work.

That's what I've got. I hope it helps.
DeeDee

* hugs *

I understand and commiserate, and oh, if only we could schedule all our dramas to hit when we were rested, refreshed and at our best. I've been the professionally calm and collected mom and the utter melt down mom, and mostly it was just being so overwhelmed that calm mom had given up and was already digging in the freezer for more chocolate ice cream while she gladly gave in to melt down mom.

And you're probably seeing melt down mom on the horizon because now it is a bit safer to go into melt down mode. You've fought to get the changes that were so vital and now, in spite of the challenges that are still in front of you, you're also seeing the light at the end of the tunnel. So, dig in the freezer for some ice cream and let yourself have a mini pity party. You've earned it, and if you throw your own, you're more likely to get back to more energy faster than if you bottle it in and then finally melt down in grander scale,

And remember this: your daughter has you as a mom. Additional challenges or no, she'll still go through all the normal pre-teen angst and come out the other side - with your to help her through it.

I want to give you a great pep talk so you feel better! But I am not sure which one you want or need.

It sounds like you are sort of stepping back and assessing where you are, and feeling wiped out.

My best BTDT experience:

1. Don't stay up at night reading about scary options. Take a break some day and go to a coffee shop and read it in daylight. Get enough sleep and take care of yourself.

2. Keep your relationship with your partner (if you have one) and other children (if you have them). Battles with a school can be so exhausting. Take care of the whole family, not just the problem. This is REALLY hard to do in reality. Sometimes it just means stopping and listening attentively to someone else tell you something they are excited about. Maybe you already do this--I find it a real challenge in hard times.

3. Do you want to consider homeschooling again? In the fall you discussed this option: "somehow convince the district to provide spec ed services while I homeschool/unschool the giftedness"(http://giftedissues.davidsongifted.org/BB/ubbthreads.php/topics/137715/2E_Schools.html) I have certainly missed many conversations, so maybe you've decided a to leave this option aside. But given your extreme attempts, I wonder whether just keeping her home and getting the 8-year-old version of that little Tigger back would be golden right now. We got our child back after removing him from school.

4. Trust your gut and self. You know what your child needs, so don't hesitate or feel stupid about going for it. Don't undermine yourself. Trust yourself. Be nice to yourself:)

I also agree with ABQ about the ice cream. :-)

DeeDee

First of all, I admire your persistence and resilience in pursuing your daughter's education. You have gone above and beyond the point where most people would have just quit. Your daughter is so lucky to have you as a mom.

I don't have a lot to add beyond what others have said. I do think that you need to take a break from the books. I call this the "What to Expect" problem. I had one miscarriage before my first kid so when I got pregnant again I poured over the "What to Expect" book. My husband noticed that every time I opened that book I came away anxious about something that had never occurred to me (and ultimately ended up not coming to fruition). He finally convinced me to stop reading it. The rest of my pregnancy was much less stressful. I've had a similar experience with the 2e books. My brain found a way to see characteristics of almost every profile in the EIde's Misdiagnosed Child book in DD11. In my mind, her challenges became overwhelming and hopeless. I had to step back and just focus on one thing at a time because I just couldn't handle trying to address everything. So, I would skip the general info type of reading right now. If you have a specific question, by all means consult the books. Otherwise, you really don't need a parade of potential horribles right now.

Pemberley, while you're coming here for a pep talk from us, I also want you to know that by coming here and checking here *you* are helping us to - really! I appreciate that you've taken the time to keep in touch and reach out to us as you go through your journey. [/quote]


I've been where you're at to a certain degree with our schools and I know what a huge toll this can take on us as parents. For me, I had to "stop" - not stop advocating for my child, but I had to stop the path where we were looking for the solutions through the public school system. You've been very successful as an advocate for your dd, and you've grown (from what little I've seen through your posts) tremendously through the process. But fwiw, when we got to the point you're at (really a bit before that point), I did stop. Gave up. Quit the public school. It wasn't easy - it was like giving up what had been a dream of mine, or at least a vision of the future when I'd first had my child enter school. It was also hard to give up what I thought he had a right to (legally). And perhaps the toughest thing for me to admit was I was giving up a battle and letting the other side "win" - somewhere along the line, for me, it turned into too much emphasis on my advocacy vs the school's not complying... and took the focus off where it needed to be - ds. I am not saying you're there yet, or that you'll ever be, but fwiw - I can't begin to tell you how much easier my life was (and how much more effective my advocacy was) once we simply changed *where* my ds went to school. There are still times I am frustrated, emotional, sad, mad, etc. But now those emotions are where they should be - they are about things my *ds* is encountering in life, not about artificial walls put up by school.


I think it's important to always keep in mind that it's not that your dd has changed, but the world around her has evolved - she's experiencing things now through school etc that she didn't have to deal with previously. I've felt many of those same feelings with my ds - when he was very young he used to wow the socks off folks with his conversations and ideas, and even up through a bit of early elementary, when he was away from school, he was still sharing amazing out of this world ideas with us at home. And he still does. But wow, those early elementary school years were horrible - filled with anxiety, stress, reports from teachers weren't at all what we'd thought we'd be receiving way back when he was that small 3 year old talking like an adult. He also went from being very happy to being clinically depressed, all within two years of going to school. TOTALLY not what we'd had on our planned road map! And there are still days I wish it had all never had to happen that way. BUT - otoh, things really did start getting better once we hit middle school - better in a huge way. Part of it was, truthfully, pulling out of public school - but I think part of it would have happened anyway. Part of it was our ds becoming more self-aware - part of that was really tough - he spent years observing and taking in how different he was in the areas he's challenged... as well as taking in how extremely boring school was in his areas of strength. But he was also taking in something else - all the pep talks I gave him sank in, all the work we did privately and at home to help him... really did help... and he started to see that. And he saw me fighting like crazy to get what he needed at school, and he started to see that it was the school that was failing him, not his own ability. SO... all of those self-actualizations started helping to buoy him up. When we switched him out to a different middle school, he was able to be appropriately subject accelerated and that helped SOOOOO so very much. Afterschooling him through online gifted courses in his areas of passion also has helped too. And... by the time he was in middle school, we really did finally have his list of accommodations in place and working for him much better than in early elementary, and that helped tremendously too. SO - it will get better.


First, I don't think it's foolish to read about challenges that are similar but perhaps not exactly your dd's challenges. If one thing is clear (as mud) from my own family's journey through 2e, I'd say it's that no one child fits any one diagnosis lock-key - they are all individuals and more likely to fit bits and pieces of different diagnoses. Reading whatever you can about anything and everything, gathering information - it can be sad or frightening or scary or whatever, but it's giving you data that you'll compare against your own dd and eventually it's another piece of solving what is essentially a puzzle. BUT don't forget it's a puzzle that you know better than anyone else.

Re NLD specifically, I have only known two families impacted by NLD, but the predictions of things becoming worse and more pronounced over the years simply didn't happen for either. In one family, the person with NLD is now a young adult. He struggled in school, but his struggles became *less* as he moved through school. As a young adult (graduating high school, starting college), he had a rough year of knowing/defining who he was once he was away from his family for the first time - but it was not unlike what *I*, a most-likely-totally-NT person also ran into that first year away from home, or what more than half the kids I knew went through going into college. He came through that year and has a fine, happy, successful life. The other person I know is an adult, and wasn't diagnosed until she was an adult. She was not terribly successful in school but she did graduate, has a good career, and has always been very self-aware of her challenges. She was happy to get a diagnosis and better understanding of what her challenges are as an adult... but even if she hadn't - she's had a very very VERY good life. She's a mom with a career and a family and is happy.

Anyway, those are just two sample data points, which is meaningless as far as statistics go.... but they are enough to make me suspect it's not all doom-and-gloom. I feel certain your dd is going to have a very happy, very successful life. She's got the NUMBER ONE thing going for her that every story of every adult who's had a challenge I've ever heard mentions as being the key - a parent who was there for them, believed in them, every step of the way.

You're doing a great job Pemberley - hang in there!

polarbear

ps -


From my perspective, on the outside looking in, you don't appear to be running out of ways to make what needs to happen happen - you appear to be doing a *wonderful* job of making what she needs happen. No one is completely clear on what her needs are, but that's most likely going to be true for quite a few years to come. It's not unlike parenting a NT child either - no one can really map out at 5,6,7 etc what a child's needs will be down the road - we meet them as we get there. It's scarier to realize that with a child who has challenges when we know there will be challenges, but we still meet those challenges as we get there. You've done a wonderful job of meeting the challenges so far, and you'll continue to do so.

Pemberly, do you ever listen to Christopher O'Riley's show on NPR "From the Top"? A while a go (not too long ago) there was a show where the young man spoke about his struggles/triumphs regarding his NLD and how he's learned so much about himself and feels alot better about his interactions with people, etc.

Maybe if you write to the show they can let you know which show it was. You can listen to archived shows if you know the date. The young man was very cool, very self-aware, and Christopher O'Riley was interested and receptiven (and he's always really kind to the kids). My daughter has never been diagnosed with this and some people who know her say "no way" and some say "well maybe" but she can be different in different settings and with different people...but regardless, I am aware of NLD and when I heard the young man talk about it I really stopped to listen to him.

Maybe it will make you feel more optimistic!!

: - )

Do you mean this one, with Alexia DelGiudice? It's a girl, not a boy, but otherwise seems to fit your description.