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.
