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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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