Gifted Issues Discussion homepage Forums Twice Exceptional Rollercoaster of Emotions... a 2E parent's ride

Hi all:

Now that my dd is happily settled into first grade with no anxiety, solid team support on the ld's and IEP and a great teacher who seems to understand her I have turned my focus to learning all I can about what she will need moving forward. I am in the middle of 5 or 6 different books - many recommended here ( The Misunderstood Child is amazing!). I am finding that the more I read the more emotions I am starting to feel about this whole situation. Did any of you go through this?

At first it was just a mad attack to gain as much information as I could to get her settled into a new school year in the proper place and with the proper support. Now I guess I have hit the stage where I feel sad about the difficulties she will face alternating with pride that she is such an amazing little person. Then there is fear about what the future may hold for her. Will she ever have the chance to make use of that amazing little brain with all these ld's to overcome? Then of course there is guilt - as I read more and more I am identifying some of my own issues and many of DH's. It leaves me feeling like this poor kid never had a chance with the genetic pool we offered her.

And then there is the anger - WHY didn't anyone at the last school recognize what was going on or listen to me when I tried to address it? And then of course more guilt over how could we have subjected her to that environment. Then occasionally pride that despite no support from the school we were able to find this early and get proper services in place.

DH is also experiencing this although his own dyslexia is making it very difficult for him to read as much or as fast as me. He is feeling totally guilty but also found out in the midst of this that during his own childhood the special ed teacher from his elementary school approached his parents several times with concerns about him and they refused to listen. "Boy it really would have been nice to get some help." So now he is beating himself up over what he passed along to her and also feeling resentment about what might have been possible if only he had the support he needed.

So anyone else experience this rollercoaster of emotions? On one hand I feel strongly that knowledge is power and so I want to learn all I can about how to help her, on the other hand so much of this information makes me sad, fearful, angry, guilty, etc. Any words of wisdom?

Pemberley - I could have written your post - verbatim. I've used the same words when describing the journey I have taken with my very bright, profoundly dyslexic son, age 14 who we identified in K. It is a roller coaster with twists and turns that include an enormous range of emotions - sadness, fear, anger, pride, hope, etc.

For me, as time goes on, there are longer instances of pride, hope and other positive emotions. I see ds growing and overcoming. Of course, his dyslexia and organizational skills will never go away, and there are times of sadness when I wonder about job opportunities, higher education opportunities etc give his terrible literacy skills.

I've channeled some of my energy in self education (love misunderstood child!) as well as beginning my own special ed training and advocacy practice to help other families. It's been a ride, on balance positive. Not sure of any words of wisdom, other than recognizing that life is not a race, but a journey. Take care, and pace yourself!!

Yeah, it's a ride, isn't it? Not my favorite, but doable, and the high points are great. Some thoughts:

1. Everybody gets what they get genetically. When choosing mates, most people don't comb their family trees looking for things that can combine badly. Your DD is very bright... I think you can call that a win, even with challenges thrown in.

Brightness doesn't overcome all challenges, but on the whole it really helps a person learn to compensate if they just learn well in general.

2. I try to plan therapies on a 5-year outlook (where will DS need to be in 5 years, what skills will he need, let's see what we can do about teaching those so he'll get there). But I try to keep worry contained locally, on a shorter time scale. I know we're doing everything we can on the 5-year goals; if he doesn't make it we'll revise; but I'm going to try to get through today in some kind of good shape, without panic, because the panic doesn't add anything valuable to the planning process. Notice the panic, acknowledge it, but let it go.

3. About having had her in a bad situation: we went through this too. We solved it eventually without changing schools through a massive education campaign and getting the principal to attend carefully to teacher placement. I think our school is now better not only for my DS but for others.

Did he suffer some in the process, before we were able to arrive at a workable situation? Well, yes. Am I thrilled about that? Well, no. But I do think he has learned that situations can change, that just because it was bad once doesn't mean it will always be bad-- and that is some valuable learning. You can't shelter your kid from everything, and sometimes letting them see and even experience problems and then see the problems getting resolved in some way is a good life lesson.

As people with disabilities, they have to eventually become problem-solvers for themselves, comfortable in the knowledge of how their disabilities affect them, and with an understanding of their ability to find solutions. If they never see problems, they won't get there.

Not to say that it's all lovely. The school part has been the hardest part for me, because there I have had the least control.

4. The anger/guilt. You can't go back and fix the past based on what you know now. (Wish you could, but you can't.) This is true for school people as well as for you. Would I have done everything differently had I known then what I know now? It would have been easier, for sure. But I didn't know, I was trying to figure it out, but through no fault of my own I could not get it done faster than I did. I think it is worth thinking this through and absolving yourself of any guilt. You got there, when you could get there. And earlier than many people do.

You worked VERY HARD this year to get your DD where she needed to be. (I was very impressed with your speed, depth of thinking, reasonableness, and effectiveness.) If anything, you deserve a pat on the back and a treat. Not self-flagellation.

DeeDee

ps Editing to add: when I reread what I just wrote, I realize that it's very like what I tell DS if he's panicking: "Make a coping statement." I just shared some of my coping statements with you. :-)

Thanks Mich and DeeDee. I know this must be a common response for anyone who discovers that their child will have issues to overcome. Hearing reasoned voices of experience from parents whose kids are further down the road helps. A lot.

I am relieved that we identified the ld's early and she is getting the interventions earlier than many kids are able to. I am also relieved that my happy, outgoing, effervescent little girl is back - the one who brightens every room she enters. (We have been noticing recently that "the DD effect" - we can tell from a distance that DD must be speaking to someone (or a group of people) by the way everyone smiles ear to ear and their eyes literally seem to dance in delight - is back.) I guess I will use that as our gauge moving forward on this journey. When she is happy and comfortable in her own skin things are going well. Not many parents can say that their child is THAT happy. I guess all the rest is gravy - right?

I know you are both right that I need to pace myself, stop beating myself up over what I can't change, recognize that I made great progress in a short time, etc. Intellectually I realize that. But I also realize that I have to be the one on guard - looking for the warning signs and advocating, advocating, advocating. People who see only her reading or writing skills do not believe she has such high level comprehension and can discuss things like subtext, character development, etc in audio books. People who have these sorts of discussions with her absolutely cannot believe she is learning disabled. So far I have been able to protect her from hurtful comments but I know that they will be coming - and probably sooner rather than later. I have signed up for some advocate training sessions that will start this week. Hopefully that will help.

How do you look 5 years down the road though? At this point I don't even know if she'll be able to read independently by then. I know we will need to start working on keyboarding and maybe some text-to-voice technology but the special ed people want to focus first on trying to get her as much of the basics as possible and I guess I agree with that, as long as that concentration doesn't prevent us from doing the other stuff down the road. I can't even imagine her sitting through standardized testing and really can't visualize how that will happen. My gut also tells me that while the public school is all over her now providing special services through her IEP eventually she won't be that cute, sweet, precocious 1st grader - will they be as eager to help her? If we can't also get the enrichment that she needs (and I don't know where we will stand on her admission to the talented and gifted program if her ld's or anxiety interfere with her test performance) then I will again be looking at whether we need to do private school with additional support services. I guess it's the looking ahead part that makes this all so tough - isn't it?

Thanks again for the supportive shoulders � I really appreciate it and am just SO happy that I found this site.

Hi Pemberley,


For me, it's happy in own skin PLUS growing in the direction where I can foresee success, noticeably adding the right skills over time. In DS's case, this is primarily "how are the social skills and self-control coming along?"


Yes, vigilance is something we tend to. However, I would warn you against going overboard with vigilance. You can make yourself crazy that way. I'm striving for a level of reasonable watchfulness...

If you haven't already, it's good to have conversations about LDs with her now, before she's a sensitive pre-teen. Make it part of the set of things she knows about herself: "things I'm naturally good at" vs. "things I have to work to be good at," while making it very clear that all people have things in both of those categories. That way, if she gets negative talk at school, she can shoot back "I'm working to get good at this" or "I just need more practice, I'm getting there" because she already knows how to think about this aspect of herself.

My mother says if a child knows he's lovable and capable, you're doing it right.


Yes, right now basic reading is The Thing for her, I'd imagine. And the ancillary skills you mentioned can come in incidentally. (There are touch typing computer games; 5-10 min. a day, as play, gets a person there, but I'd think it's a subsidiary investment to the reading, which is core).

By 4th-5th grade they start to do more independent reading-to-learn (instead of learning-to-read, and the teachers are presuming comprehension even as they continue to fine-tune it. Having a goal of catching her up and keeping her caught up to average age-peers in comprehension and mechanics by 5th is a good one-- whether it's achievable, time will tell, but put everything in place as if it can be made to happen, and keep following through on that plan.


IEP services are NOT based on cuteness, but on need. You will continue to help the school see the needs, and make sure she gets what she needs. This cannot be solved now-- you've got it under control now, so the future action will have to be done in the future. Trust yourself, you'll know when it needs to be taken; and there are annual IEP meetings that you will prep for as they come up (but not continuously, because you would go mad).

I do continuously keep shoving evidence in a binder-- completed work, both good and bad examples, correspondence from school that I find telling, notes on conversations with teachers. But I do not spend a lot of time poring over it until meeting prep time. I used to. Climbing out of my tree now.

When do they test for giftedness? I'd let that worry sit unattended for a while; addressing the LD is the best thing you can do to allow her to test well, and you're doing it, so it's not worth any further worry at this point. You can triage the worry if you want to, putting off some pieces of it.


I find I am doing the worst when I get into the hand-wringing "WhatEVER will become of this CHILD" mode, which is about the long-term future, which is impossible to predict at this point. I do best for myself (as well as for DS) when I'm following through on concrete plans that seem likely to create long-term success. We are all happier that way.

Hang in there.
DeeDee

Pemberley, you've described it perfectly - parenting a 2E child is quite the ride, a true rollercoaster of emotions. You'll find it gets easier as you move forward, but there will be times when the emotions are right out front and raw all over again. I can still remember how I felt like my stomach had dropped to the floor the first time a professional mentioned to us in a very matter-of-fact voice the word "disability". Never in a million years had I imagined that my adorable quirky obviously extremely intelligent cute little boy would have a "disability". Even now, years later, many accomplishments later, there are still days it's sad, overwhelming, frustrating. Just yesterday we had one of those days - but it was one day and it passed. I do wish so much that my ds never had to deal with any of his challenges, but now that he's in middle school I can also see that there are ways in which those challenges have made him stronger in ways he never would have been had he sailed through life and through school. Would I have purposely chosen this path? NO WAY. But all in all, it's been ok - and while my ds may never be able to do some of the things that come naturally to other people, he is going to be ok.

When our kids are young, and we're surrounded by families with young children, it's so easy to focus on school - that's what life is so much all about for everyone. When you're parenting a high-IQ kid it's full of thinking about accelerated learning, gifted programs, all that - and it can be full of parents who are all about thinking about how "gifted" there own children are. All that emphasis on school etc can really feel painful at times when you're parenting a child who struggles in some way. It's helped me a lot to put it all into context - this is one part of my child's life, and one day it will be over. It helps me to focus on just my own kids and try to not compare with where everyone else's child is at or what other parents think is important. It took me a few years to really get it, but after enough professionals had mentioned it I got it - most of ds' teachers, most of the professionals who work with him, haven't seen a kid with his extremes before and probably won't again.

We've also started to realize that there are older members of dh's family who most likely have some of the same challenges with expressive language that our ds has but were never recognized as having challenges. One has been particularly poignant for me - I don't want to go into it on a public forum, but it's made me particularly sad as it's impacting a relative who is extremely dear to me. It's not like I walk around sad all the time over it, it's just terribly frustrating to realize that there was so much her parents and teachers didn't understand about LDs just 15 or so years ago, or maybe it was the school she was at or whatever. It's just been tough to realize that our ds is getting help that she probably would have benefitted from in a big way.

I'm sorry if I rambled - my dds are in the same room with me working on an art project and making a ton of noise and mess.... so I'm having a bit of a tough time focusing lol! I hope some of this made sense.

Best wishes,

polarbear

Wow, you have very eloquently put all of my feelings into words!! I oscillate through most of those feelings each day. My DD9 has ADHD and was recently diagnosed with dyslexia. Sometimes, I find reading too much makes me feel overwhelmed and very sad on DD's behalf. I wonder, almost constantly, how she ended up with all of these diagnosis. Then I redirect my thoughts to focus on why dyslexia can and should be seen as an advantage, how ADHD makes her a highly entertaining and energetic kid, and how her giftedness means that there is never a dull or restful moment in our house. I can't even imagine how what she would be like if we could sort out each issue and make one or two go away. Each one goes into the unique and masterful making of 'her' and I would not change a single molecule in her adorable little body. But yet, I long to just fix everything for her. I want to shelter her from every bump in the road to come (and man, will it be riddled with potholes!!). I want to wrap her in bubblewrap and make everything okay for her. I want to rale at the world and God for any suffering she has endured and will in the years to come. I want to take up many hours of each teacher's valuable time and make them understand that they will never, ever in a million years see what is in her head if they choose to focus only on what she can put on a paper. I want every single person she comes in contact with to know how sensitive and insecure she is, how fragile her self-esteem. I want to be the best advocate, the strongest protector and the most badass body guard you have ever met. And I know that, ultimately, I have to send her out in the world every single day... all by herself. The best I can do to advocate on her behalf and give her the skills and courage to advocate for herself as much as possible.

This thread is the number one reason why I love and need this forum so much. How do you explain these feelings to someone who has never been through it? Hugs to you as you continue to venture through the 2E journey.

I found this amazing quote in my research on dyslexia:

�It does not matter how you learn� you have greatness in you. Your job is to figure out what your gift is and give it to the world.� Henry Winkler

We have to do our very best to help them find their gift.

This rollercoaster is an up and down ride and today I am in the downward part. The last 3 days DD has complained of "a piercing headache" at school and no one can seem to pinpoint why. I really hope we are not re-entering "the anxiety zone."

Yesterday we got her first report card from the new school. Outstanding in most areas not related to her disabilities, Satisfactory progress in all areas of the IEP, and Below Grade level or Needs Improvement in all the areas that relate to the disabilities. I can't help but feeling that no matter how hard she works or how hard she tries she will keep bumping into a brick wall. Just came from visiting school for a Thanksgiving event and several people stopped me to ask if I was ok. Apparently I looked "worried". Gee... I wonder why that would be ... {big sigh}...

Just keep working on things with her. No where to go but up! My son is gifted, hearing impaired, and has a processing disorder. I really believe that you can make disabilities better by working on the issues related to them- also focus on her strengths!

May be. In which case you will help her learn to get over/under/around the wall. She has lots of talents and there will be opportunities to use them; disabilities make things harder; but she will find a way.


Yeah, I look that way a lot too. People notice.

I think you're doing the right thing by pursuing further testing. Gather all the information, and then you'll turn that information into a plan, and then you'll follow the plan. (That reduces my stress, having a plan.)

Have you done a comprehensive vision exam lately? The headaches make me ask... though it does sound like stress. Do the teachers have information to offer you about what situations trigger the headaches?

DeeDee