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

I want to send a {big hug} to everyone on this ride. It is so nice to have others here who can relate.

I'm feeling a bit more empowered now that we have a phone consult scheduled with Dr. Beljan. I guess I have to remind myself to keep moving forward. Keeping with the rollercoaster analogy you have to work to move up but the down portion is just a freefall. When you get to the bottom I guess you have to start cranking on those gears to get back up again. (I haven't quite figured out about those momentum induced loop-de-loops though...)

DD had another "piercing headache" on Friday and I can't figure out a pattern. The first day she told me about it after school but didn't say anything in school about it. The next 3 days she went to the nurse. By Friday they just sent her back to class and sent me a note suggesting a visit to a neurologist about it. She was fine after school each time so I think it is definitely something related to stress. DH and I both get migraines from fluorescent lights, certain patterns, loud noises, etc so maybe it's something environmental, though. She had a very thorough eye exam with a pediatric ophthalmologist in September. "This is the best set of eyes I've seen all year." We have a parent-teacher conference on Tuesday so I guess we'll discuss then.

One thing she did mention bothering her - apparently her "take out teacher" is a yeller. Has never yelled at DD but apparently yells at other kids in the resource room on a daily basis when DD is in there. I'm not sure if this is the trigger but it could certainly be a big contributor. Not sure how to approach this one. Going to classroom teacher is my first thought but don't want to put her in an awkward position (first year at the school.) Maybe the school SW who is working on the anxiety portion of the IEP? Going to the principal would likely be the most effective but would also probably alienate the spec ed teacher... Any suggestions? I had been warned in advance that this teacher is very good but comes across as quite gruff and tends to be harsh with the boys she works with. I was told she would probably be very good with DD but since DD is so very sensitive she could be bothered by the way the boys are spoken to. Looks like that may be what's happening here.

When I think of genetics I think of card games because so many people told me that my son's pain and disabilities were just in the cards for him. The physical therapist said it, the orthotist who fit him for his first brace said it, my husband says it. I never liked card games and wouldn't play them because I preferred reading at family gatherings where the others played, but I know that aces are supposed to be good and my son has some aces (intelligence, perseverance, and his parents' and sister's support) that will help him through his difficulties.

I felt very guilty when I realized that my son inherited my sensitivities--we were told he had sensory integration dysfunction when he was seven but we couldn't get therapy because that wasn't covered by our insurance and we were barely able to afford our co-pays for my husband's cancer treatments. We were told to read the book the Out-of-Sync Child has Fun and we were sent on our way after only six weeks of OT, none of it for his handwriting. He was later diagnosed with dysgraphia that went along with his developmental coordination disorder or motor dyspraxia, mild muscle weakness, and low endurance. I think having hidden disabilities and trying to keep up with kids physically caused some anxiety but it didn't stop him from doing things until he got the scoliosis brace that limits his movement.

He has been out of a scoliosis brace for 2 1/2 months now because of waiting lists to see another doctor. I begged, I pleaded and asked to be put on a cancellation list for the new doctor and I made sure we were ready every day just in case they called. The last doctor he saw was not a pediatric orthopedic surgeon, just a regular orthopedic surgeon, but he accepted pediatric patients and it was all our insurance would pay for. His advice was different from that of the pediatric orthopedic surgeons that people on scoliosis message boards posted about. After two years the doctor my son saw said there wasn't anything more he could do for my son so I had to deal with getting our insurance to pay for the kind of doctor he really needed to see who would not automatically refer him for surgery. My son, who already had anxiety had to listen to some difficult things. He knows there is a risk of death and more disability if he has surgery. He watched his grandmother suffer for 8 1/2 years because of a complication of surgery. He knows he will have to go through a lot of pain for years to have any chance of avoiding surgery and he is willing to do this and this was a kid who was sensitive to clothing tags and had sock problems when he was younger. But he is doing well with the algebra word problems we are working on now and learning AP biology terms and he continues to read a lot of history and philosophy and books he is interested in. He is managing to keep up with musical theater. But he is in pain every day and will be until his childhood is over and he no longer has to wear the brace. It is hard to see my child in pain. I feel guilty that I couldn't afford to get better medical care and therapy.

I felt even guiltier when I realized that my son had inherited the migraine headaches which we found are triggered by something we can't control--weather changes. I know it isn't stress because the stress of hearing bad news about my son's scoliosis and watching my mother die did not trigger a migraine in either of us. We kept headache diaries for months. We couldn't find any other triggers. I have motor skill disorder symptoms like clumsiness when I have a migraine. My son was tested when he was getting a migraine but his neuropsychologist, who worked at a university medical center, didn't think it would affect the results of the tests and she didn't recommend OT because she thought he was too old at 11 for it to do any good. So again no OT so we worked on things the best we could and he did improve in those things that could be improved and he works around the rest of the problems. He gets lead roles in a children's community musical theater where he doesn't seem clumsy at all so I guess he compensates well for this disability. When I asked the neuropsychologist why he could do things like acting and dancing and piano which all require motor planning, she said kids can develop splinter skills. Since he seems to be able to develop these splinter skills in whatever he wants to learn as long as the instructor lets him take breaks when he has pain or fatigue, I think my son will be able to work around his disabilities.

I wish we could have found a better support system. I wish my son could have found a friend more like him, but at least he has online friends. It was hard going through things with an extended family that only talked to us about church and how their kids were doing so well in football and getting sports scholarships. They also talked about vacations and nice vehicles and clothes they could afford because they were not paying for medical and homeschooling education expenses and wondering how they will pay for college. My son's disabilities affect him physically so he will not be able to do a job requiring a lot of manual labor. I think because of his fatigue and pain issues he will not be able to work his way through college like I did. I think he will have to get a degree if he is going to have any chance of a good life. My husband is a year away from retirement and we still have debt because of things that were beyond our control like expensive home repairs and car repairs on my 13 year old car. It is not socially acceptable for us to talk about any of this or the academics we are interested in or books we are reading. I guess I need social skills training so that we can feign interest in their sports and vacations and nice clothes enough to carry on a conversation.

I wish I had some words of wisdom.

I feel the need to resurrect this thread...

DD will be going into the hospital in a few days for a 48 hour EEG as well as an MRI. The more I read about absence seizures the more I think we *might* have an answer. It would explain so much. Apparently ld's and "brightness" are common among kids with this diagnosis. Can anyone but the parents on this board understand how a diagnosis of a seizure disorder could come with a sigh of relief?

DD had no headaches over the holiday break from school which I think confirms that something in the school is triggering them. Now after getting her back to a comfortable state we have to get her stressed out and bring on every conceivable trigger to see if they can catch one of these "seizure" type episodes during her EEG. IF they can we will have a tangible explanation for so many issues.

The rollercoaster ride continues...

{hugs} to everyone else on the ride.

Pemberley, I (perversely) hope there are flickering fluorescents and everything else in the hospital so that whatever needs to be seen can be seen.

We'll be thinking about you.

DeeDee

Here's hoping you find some definitive answers that help you formulate plan forward!

I hope you get some definitive answers either way.

I had a FT job once in a lab where I had a headache every. single. day. Something in there was definitely triggering it, probably the lights. I always thought something was off with the air flow in there too. I still get them occasionally, but not every day like in there.

Just wanted to thank you for posting this. I am coming to this conclusion more and more every day, but I couldn't put it into words like this. Thanks again.

I agree! As a parent, one needs to still try to create an optimal environment, including any accommodations that might help.

I think it's more what you said in your last paragraph.

I read the quote as this, that you have see your child as the whole child, with the strengths and the weaknesses, not just the strengths.

I just came from spending the morning at DD's school where they spent the morning doing fun 100th day activities. It was fun but sooo depressing for me. They had to write about what they would do with $100. DD easily came up with her idea - answering the who, what, where etc. Instantly - the concept is super simple. Getting on paper though was absolute torture. Does she focus on placing her letters properly? Or does she focus on forming them properly? Or how about not writing them backwards? Or wait - how about spelling? No wonder she has headaches and anxiety...

So what do you parents of kids with both dysgraphia and dyslexia recommend? I saw the special Ed teacher as I was leaving and asked her. She agreed that we need to prioritize. That's a good idea so why do I have to ask to get them to see it that way? It seems like no matter what she focuses on there will still be something that she is doing wrong. Focus on letter placement and she will write them backwards and certainly spell them wrong. Concentrate on spelling and they will alternate in size, placement, etc. And never mind that she has a fun, innovative answer to the original question.

At least because I was there I could help with the fine motor stuff like stringing 100 fruit loops on a necklace. On a normal day there is no way she could have possibly kept track of her counting while doing that too.

I just feel so sad...

What we do is separate therapeutic activities (such as handwriting practice and fine/gross motor development activities) from academics, and use appropriate accommodations and modifications for academic work as needed to ensure that the work accurately reflects ability and effort, not disabilities.

For your dysgraphic and dyslexic daughter, for example, it really sounds like a scribe and/or permitting oral responses in place of written responses would be appropriate classroom accommodations for written work other than specific, targeted OT-directed handwriting instruction, until she can become independent with keyboarding or speech-to-text software. BTW, in-school instruction for keyboarding or use of speech-to-text software should be included in the IEP: it is surprisingly common for schools to provide Assistive Technology to kids but then not teach them how to really use it effectively.

For activities like the fruit loop stringing, the counting should be separated out from the motor component - once she's counted out ten piles of ten fruit loops (often a motor challenge in itself), then she can string them, rather than trying to keep track of counting and stringing together.

Her teachers should be instructed to clearly define the academic objective of each class activity and assignment (something that they should be doing anyway), and provide equal opportunity for her to access the curriculum and demonstrate mastery of those objectives in ways that are not impeded by her disabilities.