Gifted Issues Discussion homepage Forums Twice Exceptional Like a punch in the stomach...

We received the neuropsych's written report today. Even though we were already familiar with the information it contains there is just something about seeing it all in black and white. With scores ranging from 99th+ percentile to below 1st percentile it really just defines 2E. I couldn't read it in one sitting - I had to keep putting it down. It felt like I was being punched in the stomach seeing JUST how tough a road DD has in front of her. There are so many challenges. In so many areas. I can't wrap my head around how this is going to work.

Has anyone else experienced this? Intellectually I know that I have already done the hardest part - getting her identified and tested and now having the school (finally) on track in trying to meet her needs. I have to just use these test results as a road map to make sure that her needs are being met in the best way possible. I just feel so awful for her - she is so sweet and so smart and such a special little person. How do you get over the feeling of Why Her? This is so unfair - she doesn't deserve it?

Looking for some BTDT words of wisdom...

The neuropsych report on DD8 was not too bad for me, but I know exactly what you felt from the OT report on sensory processing issues for both kids. I keep wondering what I could have done, and whether this is all my fault, even though I know it's not. It's really hard to wrap my head around it all. DD8 is struggling in school, and I am in dread of DS4 hitting kindergarten. He scored at the 2nd percentile on a test of fine motor skills! At the same time, he's such a fun, funny, sweet little person! I just don't know what to think.

My DS also had a score below the 1st percentile (receptive language). It's disheartening. It made me wonder how much of everything I've ever said to him has just flown over his head. For the most part he functions really well (excels at compensating) but geez... no wonder the poor kid can't concentrate sometimes.

Yes, that's a good way to put it.
Our 'news' was that our ds was 2e in a very difficult to define way, so issues, but not much hope the school would ever understand, and also that he was depressed, which was imo, the worst news. I was shocked that I would not have picked up on that...I mean I knew he wasn't happy, but I didn't know he was technically depressed.
Now we are homeschooling for emotional and 2e reasons, he feels pretty great most of the time, but I often wonder when this might come back up and when/if he goes back to school if "fit" will be essentially unattainable, as it was before.

It is exactly like a punch in the stomach, at first. It is overwhelming and hard to deal with. As a parent, you feel a little helpless and sad that you can't fix it. I remember crying a lot in the first week. Every time I looked at DD, my eyes would well up. I lost a lot of sleep, worrying how she would cope with all the challenges she was going to face.

It gets easier as time goes on. The shock fades and you get back to the business of working through each day as it comes. I try not to look too far ahead, to be honest. I focus on helping her deal with her current struggles and concentrate on keeping her strengths front and centre.

DD helps to keep things in perspective. She rarely gets down on herself now that she has her 'long list of troubled' identified. She says that she feels like a big weight has been lifted off by giving everything a name. It gives her access to appropriate resources and stops others from blaming her everything on laziness. I figure that if she can find positivity in all of this, than so should I.

Not to say that the mommy guilt and worry is gone. But, it does get easier to cope with. Hugs.

DS12 had scores in the 99th percentile for IQ and in the 2nd percentile for some fine motor skills. He was tested when he was about 7. The road has not been easy, and things got worse before they got better, but there's definitely been an upswing since he started getting help. He has had OT, learned to type, switched schools, began receiving special ed services, began psychotherapy, started ADHD medication, and got older. All of those things together have made things easier.

Hi Pemberley,

Yes, this is a difficult business. It will get easier. Here are my thoughts.

You have been through a ton of suffering and hurt together with your child. That's been awful. It is not your job as a parent to remove your child from all suffering, though you will continue to do what you can to minimize it. As I see it, your job is to help your DD learn to experience herself as lovable and capable-- which includes capable of coping with whatever comes. Her recent success with self-advocacy tells me that you and she are on the right track with that. I am learning to trust more that with our help DS will find and use his capabilities to find his way in the world. Our job is to assist.

(Of course you will continue to mitigate her anxiety and other sufferings in any way you can; I do not mean to minimize those, only to say you need to be realistic about your role there.)

One of the things that has helped me surprisingly much is to read a bit of the writing of parents of disabled children who are differently disabled from mine. This has not only helped me learn to think about disability as a part of human experience (remember, MOST of us will be disabled at some point in our lifespan) but also helps me to see DS's assets as well as his liabilities in clear relief.

For perspective and good writing of this kind, I like this blog:
http://elizabethaquino.blogspot.com/

Compared to many other disabled children, and many other children in the world, your DD is in good shape. She has tremendous intellectual gifts, and a parent who will lovingly and persistently move heaven and earth to educate her appropriately. She won't die of malaria or malnutrition, either. It is only if we indulge in perfectionist thinking that her disabilities are crises. It is likely that her road will be less straightforward than some, but she is an extraordinary kid, and I suspect that her road will also be ultimately more interesting than many. If you help her know herself and her capabilities, I think she will be far more than okay-- I think she will find a way to fly.

As a matter of policy, our family treats disability as a challenge-- it's nobody's fault, it's the hand you're dealt, but we are great problem-solvers and we will work with that. I realized how ingrained this was in our family culture when I recently became disabled; it hasn't always been pretty here, but this attitude can get a person through a lot of things.

I also try to make sure I am managing my own anxiety well through a variety of kinds of self-care. This will be very important for you. You are going to be navigating for a long time. You need to make sure your physical, emotional, and spiritual needs are being met. You need to make sure you sometimes have fun. This is not trivial, but necessary.

That's all I've got for now. I'm sure there's more...

Hang in there. It is going to be so much better.
DeeDee

Pemberley,

Yes, absolutely I know that feeling of having been punched in the stomach - it felt like total shock the first time we heard our neuropsych use the word "disability" and I will *never* ever forget that feeling.

I'll also second everything that DeeDee said - I would have wanted to say it all but she said it much more eloquently and concisely than I ever could have

The other thing I'll add - we have 2 of our 3 kids who have scored extremely low on one or more sections of ability and achievement tests that were run when we were tracking down their challenges. You have to remember why those tests are organized the way they are - they test very specific abilities so that you can pinpoint where strengths and challenges are and they can be *very* useful. I don't see them as limiting at all. Instead, those low scores helped us target where our children's challenges were, and once we knew that we were able to find ways to accommodate and remediate and whether or not they score a low number on the IQ/achievement test loses any kind of punch once you start seeing the strength that comes out when children are given a path by which they can succeed.

I also truly believe that the school years, particularly elementary school, are going to be the toughest years for our 2e kids to fit in and find their place in school. It's not what we planned for them when we were dreaming of having children, but it is what is. I've found it's helped me a lot to read the testimonials of successful adults who have disabilities - you'll often find the memories that stick with them are vague memories of how they didn't like or didn't fit in in school but found their place in the world as adults - that's something to hang your hope on for your dd. AND... you'll also find that many of them will remember an adult who was influential in their childhood beyond just the ordinary "they were always there for me" - oftentimes it's a parent or a teacher who believed in them, who encouraged them, who supported them, and who helped them figure out how to navigate through the maze of school and how to find their place in the world. That person, for your dd, is you Pemberley, and that gift, the gift of your love and support and determination for your dd is something that she will carry with her throughout her life and that one gift will be the lasting thing that means something in her life, that will set the bar for what she can accomplish and how happy, grounded, secure, and self-confident she will be as an adult much more so than a number on a test taken when she was young.

polarbear

ps - just wanted to add - you'll get past that punched-in-the-gut feeling pretty soon too. It may come back here and there, randomly, over the years and there will be times you might be sad or angry or just wish it had all never happened, but it's never going to feel this raw and this hard again. The majority of the time - by far - you'll be either very busy advocating/supporting/researching or - the best part - you'll be enjoying parenting your dd.

Polar, do you have some specific ones to recommend? This is so helpful.

DeeDee

Thanks everyone. So nice to hear from others who understand. Last spring we formed a Special Ed Parents group in our district - I thought it would provide a RL companion to this forum where I could talk face to face with parents who have been down this road. Instead the prevailing voices became those of parents with "typical" spec ed kids who insisted it was "impossible" for some of the issues that those of us on this board face daily to exist. Thanks heavens you all understand...

I have been telling myself "DD does not have leukemia or other life threatening illness. She has not lost a body part. She is not low functioning or intellectually challenged. Keep this in perspective..." Again intellectually I understand this. Keep this in perspective...

Ah yes, the mommy guilt. As DH and I sat reading separate copies of the report he said he went through each section saying "OK, I had this too. I didn't have any help with it and I got through school. HOW did I adjust to it?" He also pointed out that his road was tough enough with the portion of DD's issues that he shares but he doesn't have dysgraphia, dyspraxia, problems with visual perception, etc. I pointed out that I have the visual perception and fine motor issues (lucky DD - she really got the best of both worlds - huh?) but I was SO dang smart everything just came easy to me in school. I never felt like I was going through a "learning process" - it all just clicked immediately. Part of the problem is understanding how DD's learning process needs to be broken down into such small components. It's almost like trying to explain how to breathe - it just comes naturally but now we have to explore each minute aspect of each process. No wonder it feels like it will be overwhelming.

I think the biggest part now is getting the anxiety under control and we are working on that. She is working weekly with a psychologist who really gets it and the new SW at school also seems fully invested. The principal will remain a problem. I will have to ask very frankly at the IEP meeting next week if this will really be able to work in this school setting if the principal really, truly cannot "get" it. I have been told over and over that we are basically fighting a losing battle if the school environment continues to be a problem.

The neuropsych diagnosed ADHD-Inattentive and that was where her <1% score came from. I don't buy it - I think the test was a perfect storm that combined her issues with visual perception, fine motor and perfectionism. I think the test actually measured how she performs *when she is shut down from her anxiety*. He suggests that we get her on ADD meds - our position is not unless we see similar results in a test situation that does not trigger her anxiety. How is it possible that in 7 1/2 years no teacher, camp counselor, dance or swim teacher has mentioned concerns about ADHD if she is really functioning below the level of ALL her peers? How is it that her preschool teacher could tell me "I never had ANY concerns about attentiveness. None." The only person who ever mentioned her being inattentive was her kindergarten teacher - you know in the environment that triggered all these anxiety issues.

So I have to keep this in perspective, find out whether it's truly realistic that she will be able to have her needs met in the current school or what can/needs to be changed to make this possible, just accept that yes - she did in fact inherit the worst of both parents difficulties along with the gifts and remain grounded and realistic in what her needs are and how to address them.

Sounds good - now just to "put on my big girl pants" as I read on another thread - and just do it. Right?