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    #227441 02/04/16 04:15 AM
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    Every now and then I need a reminder that other parents are fighting the same battle and that there are kids out there facing the same challenges as my DD. And that they are doing ok. This is one of those times. So please forgive me as I vent, summarize and ask for your words of wisdom... I sincerely apologize for the length...

    DD11's situation, and my journey as a 2E parent, has been well documented on this board for almost 5 years. We started off battling to get someone - especially our pediatrician - to recognize and acknowledge that what I was seeing was real. Everyone was so dazzled by DD's brilliance as a baby, a toddler and a preschooler that I couldn't get anyone to accept what to me were obvious hand-eye coordination and fine motor issues. "She's just so far ahead of the curve in everything that something that's age appropriate appears to be a deficit even when it's not." No, it appeared to be a deficit because it was a deficit. We lost that birth to 3 window of opportunity even though I started to raise my concerns at 18 months of age. Could I have made my argument any stronger? I so didn't want to be 'that mom' so I kept bringing it up but I didn't change pediatricians. I should have...

    Kindergarten in an interdistrict magnet with a multi grade classroom was supposed to meet her gifted needs. Instead it turned out be a traumatic experience where DD was abused - physically by the kids, emotionally and psychologically by the adults. Her by now documented fine motor deficit was punished daily "If you don't complete the writing assignment you don't go to recess. Period." Big deal if she was in OT trying to learn to hold a pencil and physically couldn't complete the writing assignment. And no, we won't evaluate her for services "She's too smart - she would never qualify." No she was labeled lazy, uncooperative and disrespectful for trying to get out of doing her work. Years with a psychologist to overcome the PTS she developed just from attending kindergarten.

    Wanted to enroll her in a lovely little private - supportive, nurturing, able to meet her gifted needs. But the district tested her the summer after kindergarten and identified the 2E profile telling me she was "*significantly* learning disabled". Her numbers made the school psych's head spin. She had never seen anything like it and teamed with district's sped director to convince me "She HAS to be in a public school in order to get access to all the services she is going to need. There is no way a family could afford to pay for all of it themselves."

    Public school for first and second grade - first with a fabulous teacher, second with one who wouldn't or couldn't understand or follow the IEP. Horrible principal who didn't believe any of it - made life as miserable as possible for DD and sent the message loud and clear to the staff that I was a crazy over the top parent who just wanted my little snowflake to be special. They, with a few notable exceptions, bought it. Then I embraced being 'that parent' - on steroids! Hired educational consultant, involved central office staff in every decision, filed a complaint with the Dept of Education. Finally hired a special Ed lawyer and got OOD placement at a spec Ed school. By now DD was crippled by migraines and anxiety in addition to having just about every possible LD.

    Third grade started at spec Ed school where they tried very hard to fit DD into their preconceived idea of what she must be, despite insisting that they offered a completely individualized education. Migraines off the charts now - switched to powerful med Topimax. Got control of the migraines albeit with significant cognitive side effects. By 4th grade spec Ed school started to get it. 8th grade reading comprehension group was too low and too slow so started 1-1 HS literature curriculum. Reading teacher 'got it' and was able to present some very compelling data that explained the 2E masking phenomenon so all could understand it. Wilson reading intervention started to take off and DD was decoding at or close to grade level. AT figured out a way to get voice to text to work so DD could actually produce appropriate work product. Anxiety under control. Despite being with an inappropriate peer group school was working.

    In January of 2015 DD had a psychoeducational eval with a 2E expert recommended by the Eides. 50 page report that detailed each of her multitude of issues and came with pages and pages of recommendations for things I should follow up on. According to this report DD's numbers occurred in 0.0% of the population. No wonder no one knew what to do for her or believed any of this was real - they could not have seen it before.

    I decided to devote 2015 to uncovering absolutely everything we could about DD's situation. Get everything identified, figure out what could be addressed and then with everything out on the table see if we could figure out what was causing all of this and what we could do about it. During 2015 we accomplished the following:

    - removed all migraine meds: migraines under good control, no longer slogging through molasses physically or cognitively

    - exited from psychologist: no longer qualifies for an anxiety diagnosis

    - identified CAPD: minor intervention training her left ear

    - identified dysarthria: sought IEE for speech which led to oral motor evaluation and tongue surgery. Totally revamped speech services to focus on muscular issues. Previous not very good SLP who totally missed the motor speech issue and labeled DD at 90% intelligibility replaced – oral motor program implemented with really good SLP who more accurately measured 80% intelligibility.

    - implemented math intervention starting at pre-K levels to plug any holes while simultaneously doing grade level math to address high level comprehension

    - 4 months of really good vision therapy: first day with reading glasses DD went from 59 wpm to 81 wpm. After vision therapy no longer needed the reading glasses. I take that as documentation of progress

    - talked my way in to get *really good* but impossible to get in to developmental pediatrician to take DD on as a patient. In first 2 months in his practice had more meaningful conversations with him than in 10 1/2 years with prior pediatrician.

    - DD, a musical theater kid, did 5 full scale productions with 4 different theater companies. Along the way realized the director of her "home company" was not treating her well. Came to understand that she is more than her disabities and does not have to accept being treated badly. HUGE growth in self esteem, self respect and self confidence.

    - 5th grade in OOD spec Ed school is going really well. Inappropriate peers have moved on leaving a calm environment. Speech, math, reading, AT and enrichment all going well. Staff loves DD and may be more importantly have really come to respect her. Sweet, hardworking, focused, smart - really a dream student.

    So now with all of this identified, addressed and out in the open I finally met with geneticist in hopes of figuring out what is behind all these issues. No real new information. "She's a pretty girl - no dismorphia", no mental retardation, no deformities, very healthy and growing well all equals unlikely to be a syndrome of any kind. This should be good news but it just leaves me hanging...

    I realize for the first time in years I don't have someone to fight. Battles to get people to understand, to take me seriously, to get them to stop treating DD badly - they were miserable but necessary. Battles to figure out what was going on or what to do about it to make DD's situation better were not pleasant but I knew they were for DD's benefit. I have been exhausted for years - physically, emotionally, psychologically, financially - but all for DD's benefit. And it's all been worthwhile because she is in such a better place than I ever could have dreamed.

    But now what? How do I make my peace with the fact that things will never be easy for her, or normal for her? That no she will never have a level playing field? I see other kids - friends of DD - who don't work a fraction as hard getting to do things that DD will never be able to do. DD loves musical theater and is an amazingly talented actress. But as a mature looking 11 year old she can no longer play little kids and her speech makes it unlikely she will be cast as a big kid. Maybe she can make her peace doing ensemble or chorus parts but eventually the awkwardness of the dyspraxia will start to make even those situations harder to come by. She and I have both worked so hard for so long - what do we have to looked forward to?

    Anyone out there with older kids who have actually found a way to work around all these challenges? Whose kids have found their way? Or adults who have done what you wanted despite all these challenges?

    With no bogey man to fight I find myself becoming depressed. If she weren't so darn smart it would be easier. I know families with kids who have Downs Syndrome, low functioning autism or mental retardation who are enrolled in programs as adults that allow them to have jobs and feel fulfilled. Am I wrong to be thinking DD won't ever get to fulfilled because there are such limits on what she will be able to do her cognitive abilities will always be untapped?

    Yeah... I need a pep talk.

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    Hi Pemberley,
    In terms of the geneticist I find the comments interesting in light of the fact that we encountered kind of the opposite. In our case there is a genetic disorder that runs through my family (a balanced translocation). This is common and affects 1/500 people, but most people have no idea that they have it. We only found out because I kept having miscarriages, and then when DS was born I asked to have the cord blood tested to find out if he had it as well. Otherwise we would probably never have known. Everyone in the family who has it looks "normal". Since balanced translocations can be totally unique (for instance I don't think anyone in the world has the same translocation outside my family), there is no "syndrome". There could be a single mutated gene where one of the chromosomes snapped that does not affect other people. In our case, since there are no common "oddities" among my family members that have this translocation, I figured it had nothing to do with DS's issues. But all of the docs we have spoken to seem to assume that it is the cause (I am not convinced and think probably something else besides the translocation is involved, but my point is that the docs seem to think otherwise--even though DS is phenotypically normal as well and healthy and they know how bright he is).

    I can understand that they need something to test for, but in the case of a translocation, it is a simple blood karyotype. You can probably get your general physician to order that. (maybe not worth it though unless your insurance covers it--ours did).

    Anyway, I don't have older kids and can't give you an encouraging story, but I also think that you still have a lot of time left in her childhood to work on some of these issues that remain. There is a lot of time in between 11 and 18, and a lot of development still to happen. Puberty tends to bring a lot of changes. Hang in there... and be proud of what you've accomplished so far.

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    Dear Pemberley,

    You must know I will always be your cheerleader! You are an amazing mom, and if nothing else were to ever happen in your dd's life to support/develop/grow her ability to fully achieve her dreams, the one thing she'll always have that *will* guarantee she'll soar are the wings you gave her to fly with.

    Quote
    But now what? How do I make my peace with the fact that things will never be easy for her, or normal for her? That no she will never have a level playing field? I see other kids - friends of DD - who don't work a fraction as hard getting to do things that DD will never be able to do.

    Finding peace can be difficult - for me I find the roughest part is seeing how much our ds' childhood wasn't about being a child but instead about time invested in overcoming challenges. Sure, all of it is giving him something he'll be able to reflect on someday as making him stronger (or whatever).. and yes, he does truly believe that if he had the opportunity to do it all again without dysgraphia/etc he wouldn't... but still... blech. I'd give anything to have a childhood re-do for him free of the challenges.

    Re looking forward, the only advice I can give you is to let you know that when ds was entering middle school I had many of the same thoughts. How would he ever be able to function as an adult? What would he miss out on? Would he ever have friends, be able to live on his own etc. Those middle school and the years through the teens are truly life-changing... ds is in so many ways an entirely different person today than he was at 11 or so. I'm sure you must have read my stories of repeating locker checks at the end of the school day, day in, day out, for several years. That same kid who couldn't figure out how to turn in an assignment at 11 is today as a sophomore suddenly managing to keep track of his work. I shouldn't say "suddenly" because it took years of scaffolding, but the point is - he *arrived*. It happened. And not just with organization but in so many other ways too. I feel certain you'll see the same type of evolutionary changes with your own dd as she moves through the teen years.

    Will you ever stop worrying about it, digging deeper, or hoping for more? I doubt it, but that's ok. That's what makes us moms, and what makes us human. Wanting more for our kids. {{{hugs}}}

    Originally Posted by blackcat
    Puberty tends to bring a lot of changes.

    And... one last thought.. which might sound dismissive, but please know that it isn't meant that way *at all*. Back to the puberty thing and hormones and all that - the one thing that probably has been more helpful to me than anything else in ds' journey is having a nt dd a few years younger and going through the same journey into middle school with dd and her many many friends. Also seeing my friends friends going through puberty. This is a time that so many of us with *nt* kids also ask many similar questions. I can guarantee you that if you spent a nanosecond getting to know my oldest dd and pondering what's up in her life at the moment, you'd wonder... how the heck is this kid going to make it on her own someday? But she will. It will turn around. Please know I don't make this comparison flippantly at all - it's just something that I throw out there to help maybe put a little bit of perspective on it. For all that we're dealing with the emotions and challenges of raising 2e kids, we're also dealing with the emotions and challenges of raising "just kids" too. If that makes any sense lol!

    Hang in there and vent away!

    Best wishes always,

    polarbear

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    Here's a virtual hug to you!

    Your daughter has been through a lot in her 11 years and is making tremendous progress (in no small part because of what you've done). Try to enjoy that and not fret about the future (which is hard because you're used to doing so, with good reason, since you were trying to get answers).

    It's impossible to know at this point what her options or callings will be -- they could be in areas neither of you can imagine now. There are so many examples in the world of people who have succeeded in their desired path despite real barriers. I have a feeling she's going to be one of them.

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    Pemberley,

    You have achieved tons - just 2015's progress reads like an obituary, I.e a lifetime's work.

    You are no doubt a little burned out and suffering whle your body and soul adjust to 'new normal' and healthier levels of cortisol and adrenaline.

    Take a breather while you can because the fight never stops and quietly pat yourself on the back for getting this far while you are at it!


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    As always, wonderful advice above.

    I won't duplicate, but I'll add a couple of thoughts:

    Remember that school, while it occupies a disproportionate amount of time in the lives of children, ultimately is only a very small part of who your daughter is, and of the form her life will take in adulthood. Step around to the other vantage point, and admire her incredible resilience, optimism, determination, and strength (all attributes YOU helped grow in her), which will have more to do with her long-term outcomes than any disabilities she may live with.

    And for yourself:

    Give yourself permission to relax a little, to refresh and take care of yourself for a moment, to spend some time re-discovering your own joys and identity apart from being your daughter's champion. (Of course, that will always be part of your identity--you're a good mom!). Remember that the uncared-for caregiver eventually becomes unable to caretake effectively.


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    Pemberley - I am in awe. You are such an amazing advocate and parent for you child! So happy for you and your DD that she's in a good educational environment right now.

    I hope you are able to take aeh's advice above and take some time for yourself (I know that is NOT the easiest advice to follow!).

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    Hi P -

    Everyone has said it better than I will - but I wanted to post to give you a virtual hug. My DS hasn't had nearly the challenges your dear DD has (although he definitely has them), but I understand the need to keep peeling back the onion only to find that you have peeled back as much as you are able to and you know it's still not enough.

    Hang in there, and make sure to do something nice for yourself. You deserve it smile

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    So much has already been said, but I just want to chime in that you've done amazing things, and it's not surprising that you would feel that post-adrenaline let-down. It happens with other things in life, too, where there's a huge build-up, a huge investment of mental and physical energy, time and work, and then when it's over, it's like, what now?

    I think that's when it's a great time to do something to treat yourself (and your family), to breathe deeply and stay the course. Take a little break, find a distraction, a neglected project, and then later you can think about what might be coming with a clear head and shifted priorities.

    Honestly, in the past, I tended to get sick after something super huge was over. Like the adrenaline kept my immunity strong, and then I would crash. So take care of yourself, exercise, eat healthy, be mindful, be relieved.

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    I just wanted to offer a hug and say that I am in complete and total awe of you - you are an amazing parent!

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    Pemberley, please get *yourself* to an amazing doctor who will give you a full physical, and also go see a counsellor about feeling depressed! It sounds like you're completely burnt out, and you're crashing. I know it's easy for someone on the outside to sat "take some time off!, even though it's perfectly clear that No One can do your job. Right now, your daughter in a good place, she will need you to go to bat for her again soon. Until then, it's okay to let go a little. Heck, it's okay to grieve a little, crash a little, let emotions come you simply didn't have the time or energy for.
    Remember your daughter is exactly who she is. Her talents compromised by struggles. Her struggles compensated by her talents. She is a unique package and asking "what if" isn't fair to you or her.
    I keep fighting the "what if" myself. What if my oldest weren't held back by his anxieties and depression. What if my youngest could walk and talk, didn't need walker, wheelchair and all those therapies, how will his body ever be able to do right by this amazing little mind trapped inside (he can play Uno and appears to be an emerging reader at three). What if we had the time and money to let our daughter develop her talents, not be overshadowed always by her brothers whose needs tend to be so much more in-your-face? Don't go there, I tell myself. They are what they are, I'll just work my butt off to help them be happy and useful.
    And it just occurred to me I've forgotten to go to my exercise class yesterday *again*.

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    Originally Posted by Pemberley
    Am I wrong to be thinking DD won't ever get to fulfilled because there are such limits on what she will be able to do her cognitive abilities will always be untapped?

    Yeah... I need a pep talk.

    As for this part specifically - it is natural as parents to worry about their children's future. I don't have the specific challenges that your daughter has had (except possibly with speech) but I have been in special ed basically from K-12 (I have sent a PM on more about that, Pemberley).

    I feel sad that you view her high intellect as a cause for potential unhappiness at "untapped" potential - because when I look back, I know if I did not have the impact or even late discovery of my disability, it is a big question if I could have tapped into my full scope of my cognitive abilities. To some extent, having to compensate for all the challenges I faced has tapped into abilities that I may not have realized I had - especially those involving perseverance, having to constantly go outside of my comfort zones and hard work just to get to same level that others mastered years before me in some areas.

    I don't feel any less fulfilled even though there are paths that were blocked - because there were many other paths for me to explore. In some ways, I feel lucky because of parental support and because it has given the soft skills that helps me today in my workplace.

    Your DD is lucky to have you in her corner - someone who is working hard to allow her to realize her abilities and challenges. Not all parents are like that - I have met others with same challenges as mine, and who were not as fortunate to have parents like mine to push them as mine did, and who slogged through the 12 years of school IEPs etc like my mom did.

    Last edited by notnafnaf; 02/04/16 03:57 PM. Reason: typo
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    Pemberley, I wish there was something I could say or do to help. You have always been so gracious with your guidance. Just know that the efforts you have put towards your child's success will show itself in so many ways, and have in 2015..all because of your daughter's hard work and your valuable support. Sending virtual hugs..would send wine but not sure that is legal cross state lines smile

    Take care of yourself

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    Pemberley,

    You and your daughter have climbed some mountains ... no wonder you are exhausted. But the hard journey up makes the view so much more precious. It sounds as though you have provided your daughter with great support and scaffolding, and she has developed strength, resilience and grace. I would call that a far more meaningful and durable success than the 'bling' of showy accomplishments. Those for whom the journey is difficult often take far more true pleasure in each small step, and they are not dissuaded by stumbles.

    fwiw since I have seen you mention it on other threads, eosinophilic esophagitis is sometimes correlated with connective tissue disorders. While the geneticist may not have been able to identify anything obvious, this might be an avenue you could investigate if you are driven to know "why".

    On the musical theater front, if your daughter's speech makes it difficult for her to take a leading role perhaps she could look at different paths - e.g. into directing.

    Originally Posted by Pemberley
    But now what? How do I make my peace with the fact that things will never be easy for her, or normal for her? That no she will never have a level playing field? ... She and I have both worked so hard for so long - what do we have to looked forward to?

    She is unique and brings an original perspective. That has enormous value. Comparing to others is not a good approach and overlooks the private battles they may be fighting. Don't dwell in that alternate reality. Your daughter has mastered skills others may never imagine, developed resources and creativity beyond their reach, and has depths far beyond what they have seen. The world is what she makes of it and she will find her path.

    Hang in there.

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    Thank you so much everyone! I'm so happy to have a group of people who get it. The exhaustion of constantly battling and knowing you don't have the option of quitting. The drive to find some way to make if better while simultaneously knowing their brains should see them through. Realizing no one (except the folks here) can really understand what you - or your child - is dealing with. The constant researching and advocating and explaining. Yes I have a right to feel exhausted...

    I had an hour plus phone conversation today with a RL friend who is on her own 2E journey. We have known each other since our kids were babies and have been on this journey together. She knew DD as that dazzling one year old, the anxiety ridden first grader, the special Ed kid fighting her way through it all. She kicked me in the derrière and insisted that I take a good hard look at how far DD has come. How well she is doing. What a happy, optimistic kid she is and how comfortable she is in her own skin. Not an easy feat for any 11 year old and really quite remarkable for a kid with the list of challenges she has faced. My friend told me that of course I'm looking for the next fight - I've been in fight or flight mode for years but without the option for flight. She pointed out we all have these types of days occasionally and today was my day. Tomorrow I will pick myself up and keep on going. So if any of you kind souls who took the time to respond find yourself having one of those days please know you are not alone.

    After this conversation I headed down to DD's school for a parent/teacher conference. 3 teachers sat there literally giddy with excitement about working with DD. Giddy! And no DD is not decoding at grade level - she is now ABOVE grade level. I couldn't believe it. Since reading teacher and teacher doing the math intervention are both trained in Lindamood Bell they decided to introduce 6th grade reading a sentence at a time. I was shocked. When I asked DD about this she said "I had no idea it was a big deal..."

    So yes I have raised an amazing kid. Yes she is resilient. She has a strength inside herself I can barely wrap my head around. Most days I remember that and am in awe of her and cannot believe that I am lucky enough to be her mom. I recognize she has benefitted enormously from my giving it my all and many, many kids are not as fortunate. Intellectually I know I should avoid the what ifs and comparisons and the looking into the future. Some days I just can't avoid it. That's when I come here and seek help from all you wise souls who are on a similar journey. With DD turning 11 and entering puberty I have been smacked in the face with the reality that this has been her childhood - this is what she got. We have tried really hard to do as much fun, normal kid stuff as we can. (OK even some over the top stuff like the recent Hogwarts letter and Harry Potter party with 22 kids in attendance...) But the sobering reality is her childhood has revolved in large part around her challenges. That's the reality and I have to accept it...

    After the PT conference we went to lunch at a favorite restaurant owned by a celebrity chef. I allowed myself to be in awe of my DD. I allowed myself the luxury of self indulgence and patting myself on the back knowing that she is doing this well because I have fought tooth and nail to get her what she needs, she has worked her rear end off, we have had a number of people really throw themselves into finding ways to get her what she needs. It has taken a village. And everything she has overcome - from the awful interdistrict magnet to the horrible principal to the people who label her as the special Ed kid who just be happy to be allowed to participate - have given her strength and resourcefulness.

    I hadn't even thought of the physiological aspect of feeling so drained after the long fight so thanks to all who mentioned that. I do in some ways feel like a boxer who has just gone 10 rounds. I will have to make it a point to start taking 30 minute walks, outdoors at least 3-4 times a week. Sunshine, fresh air and excercise while listening to a novel on audiobook. Simple, doable and so very necessary.

    Thanks again to each and every one of you. The pep talks worked. My fears and concerns haven't gone away but you helped me alter my perspective. That's huge.

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    Glad to hear you are feeling better.

    A success story I forgot to share before is a friend who has a daughter who wasn't diagnosed with dyslexia until late in high school. She was gifted which is probably why. She also has ADHD. She is now a very successful MD. Kids learn how to compensate, and those who are gifted are especially likely to do that successfully.

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    There was so much I wanted to say, reading through this thread, but then I got to your response, Pemberley, and I am all tears and beaming smiles, and can barely see the screen through them both. I will return to this post when I find the journey overwhelming - as well as when I am celebrating the incredible places it brings us to.

    The only thing more amazing than your mothering is the daughter you have raised. So many years focused on fighting battles to deal with everything wrong. We do mourn the childhood lost, as well as the future that won't be. That is reality. But only a small part of it, overwhelming as it feels these younger years. Immersed in problems that demand everything we've got (and then some), we easily lose track that they are only a small piece of our child. But the strengths - oh the strengths you have unleashed! She is an extraordinary girl, your DD, and she is going to take on the world in ways that will astound you.

    For many of our kids, school makes incredible demands on their weaknesses, and allows little room for their strengths. The latter seem insignificant in comparison, and seem to provide limited benefit. But the real world, scary as the prospect is, is full of places where those weaknesses will matter so much less, and her strengths so much more. She will have the freedom - and the courage and strength and skills and perseverance - to find the right places and people, the ones where she will take those wings you've helped her grow, and soar. She really, really will.

    On a more prosaic note, I happened to be at a meeting of our local LD association last night, and the presenter was discussing how fast the workplaces out there are changing. A generation of kids is coming through with iPads attached to their fingertips and assistive technology as natural as breathing. I was fascinated to hear her describe how they are walking into workplaces expecting Individual Employee Plans - and they're getting them. The workplace is changing faster than the schools, it would appear.

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    Joined: Sep 2009
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    Pemberley, your follow-up post made me smile this morning. Over the past month, I've been feeling anxious about my 2e DD13's decision about where to go to high school and which program to choose. This decision-making process has dredged up all of the struggles that we've gone through on her behalf. Your post reminded me to take a look at where we were and see how far we have come - and yes, I am using the word "we" intentionally. The years when DD was in K to 2nd grade were so hard. We were trying to figure out why our obviously bright child was struggling so much in school. DD was exhausted when she came home from school, often in tears. I felt like such an ogre trying to get her to work on reading or VT exercises after school. DD felt broken and like she was a disappointment to us. I worried that she would never function in the real world. I'm getting teary just thinking about this time again. It was awful for both of us. At times the rest of elementary school was pretty bumpy too. Now, my 8th grader can look at me calmly and say that she really hated me at times. She also thanks me for going through everything with her.

    I sometimes wonder whether I did enough, whether we should have made some different choices in her education but I try to cut myself off from that line of thinking. With what we did do, we have a daughter who reads at a higher level than we ever thought possible, uses people and technology to help her overcome what she now considers relatively unimportant deficits (spelling), is a fiercely independent and knows that she is highly capable. The other day, she found a poem that she wrote in 6th grade. She compared her struggles in school to "swimming through crystallized honey." She looked at me and said "Wow, everything seemed so negative then. I was such a drama queen." It made me happy that she doesn't feel this way right now. I know that there will be more challenges ahead but I have to believe that all of our hard work in the early years has paid off.


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