Gifted Issues Discussion homepage Forums Twice Exceptional 2E suspicions/turbo parent?

I felt that everyone thought I was crazy including doctors. All they saw was a smart kid. He was born with hypotonia and couldn't walk until he was 18 1/2 months old when all other babies in our family walk before they turn one, but he started reading on his own without being taught a year later. We could not get OT or PT because it was as if even his doctors thought he couldn't have too much wrong when he talked like a kid several years older. We had difficulty getting referrals from his primary care physicians.

They almost had me thinking that maybe he was a little lazy and that was why he didn't have as much endurance for physical activities and couldn't write for more than five minutes before complaining that his hands hurt. It was horrible to have people think I was either crazy or lying.

I feel like we are in some never ending episode of "Mystery Diagnosis." Now that he is 14 and needs surgery we are getting a referral to see a geneticist to make sure he doesn't have an underlying genetic disorder that could cause surgery complications. My anxiety is at a very high level.

People finally believe us now but because of what we went through I feel extremely isolated. I can't be around my extended family because of the stress right now, not even for Thanksgiving. I will visit my husband's family instead. I never felt like they doubted me.

My parents thought we were exaggerating for sure in regards to our son's behavior issues, until they kept the kids for a week while we were out of country. Upon arriving home I got the whole "wow, I think something's up with DS!" Gee, you think so??

They all were telling me he was gifted, though, long before we had him tested.

This rings true for me too... I have son who is so similar to Lori H's... very intelligent but has hypotonia (as well as vision issues). He uses words like "nefariously" but can't write his name legibly. I was told today by DS' teacher that I "need to relax," which I get why she said that (I spend an awful lot of time tryign to help, advocate and try to figure out the best way to help my son) and maybe there is some truth to that but ... how can I relax? when I do relax my kid gets mislabled, misdiagnosed and misundertood ... he get anxious and depressed because he is so complicated and trapped. I am taking my guy to CHOP neuromuscular clinic in a few weeks in attempt to also see of we can find out they what and/or why behind his hypotonia and vision disorder (both of which are neuromuscular). My mom, and I think perhaps sme others, seem to think I just need to relax - to "stop looking for problems." Really, how can I do that? Anyway... sorry that I rambled I just can relate!

It's really tough to hear this as parents, particularly when our kids are young and we are still working through figuring out what's up. I think I became somewhat used to dealing with it eventually. The one thing that struck me when I was reading this again this morning is that now that my ds is older... he's starting to have to also deal with those comments and thoughts (he has issues very similar to Lori's ds). I suppose part of going through the comments as parents is what we need to do to work through how to model for our kids how to deal with them, which they will ultimately have to face.

polarbear

I should add I do like hearing that things will turn out fine (even great) ... etc etc... I like those anecdotes, the success stories - they do gve me hope. My husband is one... he had hyponita and some toher issues... They treated him kindly at school but treated him as he were slow cognitively and he blew them away in middle school. So... I ove those stories. I just hate the "you're lookig for problems, he is/will be fine" type sentiments. There is a difference albeit subtle at times. My mom told me I take my son to "too much therapy" - "I don't like all this therapy!" she said "He'll be fine! The more therapies you go to the more problems you find!" Just tell them "no" enough... Like soemone is forcing me to take my kid to therapy. Love her but I really wanted to tell her to shove it.

DH was not on board with the dyslexia concerns until he started reading the beginning BOB books with DS. The school asked us to work with him at home and I was the one doing it. He did it once and was convinced something is not right. The repeated struggle with simple sight words like "the", "is" and "and" is so noticeable. Plus, he has reversals, inversions and transpositions like crazy.

Slide 24 at this link seems about right given the stuff he comes up with while trying to sound words out.

http://neurolearning.com/ReadSpellWrite3slides.pdf

We have all that in our families too. I think part of the difference may be in family personality - my dh's family (which has dyslexic family members and I'm guessing other older relatives with expressive language challenges) just doesn't tend to talk about this type of thing. So on the one hand, that's good, because it means no one is offering up not-asked-for-advice... but otoh... it also means our ds had been already diagnosed for several years before we accidentally found out he has a cousin with exactly the same challenges... and honestly, it would have been helpful to know that way before he was diagnosed





It's not always easy to see this when you're in the midst of struggling with possible 2e issues (or any kind of a challenge).. but, fwiw, parents of typically developing non-gifted non-athletic not-much-of-anything-out-of-the-normal kids can also act this way too. Sometimes it helps me to not personalize comments like this as related to the actual issues my child has or to my parenting, but to remember the comments are coming from the personality-type of the person who is making the comments. That at least makes it easier for me to brush the comments off and ignore them.


Honestly, I might tell you the very same things with the absolutely best of intentions and because I care. My child is older. He is ok. In spite of that not being delivered in the ideal way as a message, there is caring behind it and there can be understanding - I (and perhaps your relatives) have once been in the very place you are now worrying about your child and not knowing what is going on. Try to just tell yourself they care and then change the conversation to something that's easier to talk about.

And I know - totally easier said than done!

Hang in there -

polarbear

We have all that in our families too. I think part of the difference may be in family personality - my dh's family (which has dyslexic family members and I'm guessing other older relatives with expressive language challenges) just doesn't tend to talk about this type of thing. So on the one hand, that's good, because it means no one is offering up not-asked-for-advice... but otoh... it also means our ds had been already diagnosed for several years before we accidentally found out he has a cousin with exactly the same challenges... and honestly, it would have been helpful to know that way before he was diagnosed





It's not always easy to see this when you're in the midst of struggling with possible 2e issues (or any kind of a challenge).. but, fwiw, parents of typically developing non-gifted non-athletic not-much-of-anything-out-of-the-normal kids can also act this way too. Sometimes it helps me to not personalize comments like this as related to the actual issues my child has or to my parenting, but to remember the comments are coming from the personality-type of the person who is making the comments. That at least makes it easier for me to brush the comments off and ignore them.


Honestly, I might tell you the very same things with the absolutely best of intentions and because I care. My child is older. He'll always be dysgraphic. He might not ever be able to write a paragraph independently. He's wicked smart. but didn't always have access to gifted programming at school. He won't ever like to play team sports. He's most likely going to be an engineer. He is ok. In spite of that not being delivered in the ideal way as a message, there is caring behind it and there can be understanding - I (and perhaps your relatives) have once been in the very place you are now worrying about your child and not knowing what is going on. Try to just tell yourself they care and then change the conversation to something that's easier to talk about.

And I know - totally easier said than done!

Hang in there -

polarbear

We have family members who have had...opinions...about my daughter and her diagnoses. I'd say to ignore them, which is mostly what I've done, but sometimes it simply isn't possible. I will say that in a couple of cases I've been soundly vindicated as she's gotten older and they've gotten to know her better. Same thing with her teachers, who think I'm nuts at the beginning of each year and usually "get it" by November.
Either way, about all you can do is embrace the helicopter and the straightjacket, and move on, because what they think of you won't change with explanations and arguing. The only thing that will help is that they get to know your kid (especially during a few of his or her particularly odd moments).

edited to add: I have a couple of friends who have older and younger girls with similar constellations of diagnoses to my daughter. None of us have chosen to handle things the same way, though we've all had about equal success with our choices. The "she'll be fine" phrase gets tossed out there a lot from older to younger. And judging by the facebook photos I see of one child having the time of her life at college, I'm inclined to go with that.

Thanks for the responses. It was fine. It came up a few times but it seems the collective opinion of the family is that dyslexia is "real" and should be either diagnosed early or ruled out. I think the OT for "sensory issues" is the one everyone thinks we are wasting money on. Whatever.

Now, the new question. DS can get on the Eide wait list with an appointment in Oct. 2013. Since we are local, he could be in earlier if there is a cancellation. It is pricey and there is a long wait but they are experts in gifted dyslexics. We could probably get him in to see someone else earlier and pay less for the assessment. Setting the issue of cost aside, would you get an earlier appointment with a regular doctor or a later one with an expert?

I am inclined to wait. He is in early K. If diagnosed next fall it would still be early. He will have just turned six.

I am interested in hearing from anyone who might have had a diagnosis missed early with a regular doctor only to have it discovered later.

If anyone has had a good or bad experience with the Eides, I would like to hear about that too.