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Given that at 11 her brain has not finished growing/maturing I would not give up. I think there is still room for improvement - I think it is possible. But re-adjust your expectations (not saying you had unrealistic ones before) go into it with a - working on this to "maintain" it approach and it something stick and you see a period of growth or a learning spurt maybe double down on it during those times? 11 is so young to sort of give up on a necessary skill. My dd is the same but opposite. She is verbally inclined but can't tell you a thing about numbers. I remember saying to my husband in frustration 'can't school just let her skip it?!? It is sooooo painful to watch. One of the reasons I don't home school is because my personality would be such that this kid would NEVER learn math again. I hate it myself and DESPISE it more when the person I am working with is perpetually confused. It brings out the worst in me! LOL But definitely take the breaks from it when needed. We took an entire Summer off from math one year - and right before school started we sat down and she forgot how to add. She was going into grade 6. Forgot how to subtract. Had to finger count 8-3=? That question was on the sheet in three places and she got three different answers WITH her fingers. But the break had no real neg impact - the few skills she had eventually (quickly) came back and she was no worse for it.

yes the trick is knowing what there preference is. My dd prefers things to be SKIN tight so going up a size would make it worse. We need a size smaller if that makes sense. But there is no rhyme or reason sometimes. No sleeves, no socks, no leggings - but skintight pants are ok. I could go on and on

I wouldn't get rid of a doctor that you otherwise like and trust either. Nor do I fault him for not understanding the full scope of SPD. I'm LIVING it and don't always get it. But I would educate him and get him on board so that he can be be on the same page. SPD is a complicated disorder and it's reach is more extensive than you realize at her young age. It will impact so many things that will require his and other practitioners support as she ages. I can't imagine the relationship being successful long term if he doesn't understand her medical condition so it's best to see if you can get him on board now.

Sounds exactly like my dd at that age - brightest in her class so not viewed as struggling, and very quiet/mature. The POSTER CHILD of who does not need ANY help to function in school. But then as school became more complex and she matured it began. Unfortunately the small school we were in had already pegged her as very capable and mature so it was YEARS of me trying to convince people she was struggling. Then to appease me they would administer some minor math test (I forget the name) and she would show as being low end of grade level. But grade level so no problem!! Which seems fine but 1) she was so bright that those scores seemed so misaligned from her intelligence overall. Esp considering that 2) we we CONSTANTLY doing math at home. For the amount of math we were doing she should have been top of her class. So I relate to the position you are in - gut instinct that something is wrong but not enough people seeing what you are seeing yet. Kind of like Sunuffleupagus on Sesame Street!

What a great resource! Your enthusiasm and excitement is palpable and I am happy for you guys!!

Exactly!! My kid has gifts - trust me I am in AWE of them. She literally can take a bag of balloons and a dozen barbies and construct a fashion line of clothing for them. She can sculpt and draw YEARS above her age level. She can read at University Level and has SIX blogs but if I turn to her right now and ask her the answer to 16-4=? I could be here all day. We will need fingers and toes and we will probably get it right but maybe not? And if we got it right and I asked her FOUR seconds later she might get it wrong that time. Her gifts are not relevant in mainstream school and so to label her as gifted in reference to THAT environment is misleading.

I would still label one of the exceptionalities as gifted. I would just re-term the condition "Twice Exceptional" with one of the exceptions being gifted and the other being a brain based disorder such as ADHD, SPD, etc. I just think having Gifted in the label gives a false sense of educational strength that is misleading when it comes time to work with them. Or the label should contain reference to the other exceptionality "Gifted-Challenged" or "Gifted-Can't remember!" LOL! I think the everyday person (and even most teachers) misunderstands the use of the word gifted in this context. Heck I am just starting to digest how my kid who struggles to do basic math could be regarded as gifted.

This is a great point! And I would like to point out that a) at those ages my dd was not struggling in school at all. She was considered one of the brightest. It started to fall apart in grade 3 when she was unable to memorize her multiplication tables and when math became more complex and required the ability to do mental math. b) Until VERY recently I had no idea that when my dd is in crisis mode she just shuts down and becomes quiet. She has a boy in her class very similar to her but when he is pushed to far or gets overwhelmed he throws a chair. My dd under the same set of circumstances shuts down and becomes quiet and uncommunicative. Hence teachers keep talking to her and trying to drag answers out of her and her experience in school is much more unpleasant than his because his cues are so obvious. Now my dd has thera-putty at her desk and I am trying to educate her teachers that when she starts to KNEAD that putty frantically that she is in crisis mode and they need to give her time/space.

Yes her symptoms ( the ones that led me to a Nuerologist) are very recent. And they coincide with a period of time that she was becoming more sensory aware so not sure if the self reports of her legs indicate anything other than a new awareness of them. Again her Vestibular/Proprioception is awful. This self reporting of her legs happened to also be the Summer where she can finally do handstand (in the water) and have her legs do what they are supposed to do - best tightest handstands with cute little pointed toes and all. So I see that there is the possibility of a connection to just a new awareness. The B12 injections - we have only had two - and the iron are already starting to show slight improvement in her energy level. Oddly enough even her consistently bumpy,pimply forehead is smoothing out and her skin is clearer/brighter. Time will tell the full story I guess? But if we need an MRI it will have to be with sedation - as things are now. Her sensory system explodes if anxiety and sensory input are combined. So headphones and music and a blindfold would spin her. Thanks for your thoughts - I always look forward to reading your insights!

We have just started to realize that our dd is gifted 2e though I think the gifted label does her a disservice and it should probably just be called Twice Exceptional given how much she struggles in some aspects of school.

Our dd at that age was the exact same and it just got worse over the years left untreated. You don't need a diagnosis to begin helping her as most people pay OOP for services anyway

She has SPD just based on this alone. You need to research and line up your data with what is known about SPD and then educate your ped. Or find a second opinion from a ped who understands these issues.

I will type more later when I have time but that is the definition of SPD in my world. Much like kids with tics SPD kids often just dig deep and tolerate the issues in public then meltdown at home. Also the ability to tolerate something changes from hour to hour. I have a child with pretty severe SPD and once she was playing in a bowl of goop (flour and water mixture) she is tacitly underresponsive so typicals seeks to touch and loves touching most things. But the things she can't touch send her into a tail spin. Anyway she was LOVING squishing this goop - until she didn't - and then she went into a full blown panic attack and was trying to get it off right.this.very.minute! She was starting to tear up and running in a panic trying to get into the shower but I could see how that was gonna play out with her getting that goop all over her clothes and skin as she undressed so I had to talk her off the ledge and wash her hands for her in the sink. She got a new bed and bedding - she loves it. But some nights if she is overtired etc the minute she turms off the lights to go to sleep it begins. Sheets that were once fine to sit and read in now are too crumpled and wrinkled and lumpy and scratchy. If I catch it before she spirals she will be fine and we make some adjustments. The other night it happened and I send my husband in to check and the next thing you know she is sobbing and can't touch even my sheets and had to sleep on the floor for a few hours.

Well that is something else you misunderstood - in my OP I asked what people thought...and I responded favorably to all posts whether they agreed with me or not. My update post was exactly that...an update. One in which I clearly stated the choice I made. Agree with me or not - but to keep badgering at me about a situation that you only have limited information on doesn't prove that *I* am the stubborn pig-headed one.

I'm not going to engage you on this because I think it's clear you have a strong opinion on this. But to be clear he said he had ZERO concerns that she has something neurological going on based on ALL the test you perform to evaluate if something neurological may be going on. But if you want to nail him to the cross over words YOU put in his mouth have at 'er! LOL

Kat w - You are the sweetest thing ever! The fact that in the face of all your pain and struggles you take the time to come here and help others and say such kind encouraging words makes you a very special asset to this board and I am touched that you have taken the time to read my story and offer your opinions. Opinions that I value - which is probably why I wanted you on board with my good news so bad! LOL Hugs to you and your beautiful family! Nothing but peace and love here for you! Keep us posted on your grandbaby!

Thanks everyone. Kat w I am hoping you don't leave. You have an amazing story and clearly more strength and resiliency than most of us will ever need to find. Your voice is valuable here. Sorry if I came across frustrated. It just felt like the same cycle of KNOWING your child has an issue and no one believes you but in reverse. Heathermonster - I think in Canada there is slots left open for emergencies. So when I was having multiple breast MRI's (which ended up with me having nothing) they always got me in immediately and once on the phone the lady said "We still haven't filled our 11:am emergency slot -it's not likely we will now - can you come in then?". Same with this Neuro when I called to see if I could get bumped to the top of the waiting list because of my concerns she said "let me talk to the Dr and see if your situation warrants giving you an emergency slot". So I don't think people get bumped often. But I am sure that it probably does happen. My brother in law had to get an MRI on his ankle - nothing serious - I'm sure he ran the risk of getting bumped. Anyway...I think nothing more needs to be added to this thread. I appreciate all the feedback :)

And this wasn't even my comment!!

You know what I have tried REALLY hard to choose my words in a way that conveys my sincerity. It is YOU that keeps copping an attitude about what I am saying. Unbelievable that I am seriously just trying to get your feedback on my situation. the specifics of what concerns you and you call me passive aggressive?!? Done.

Kat w - Canadians may think we amareicans have no idea what were talking about when it comes to medical care BC you all have a socialist health care system. I want to clarify before it gets further misconstrued that any comparisons I have ever drawn between US and Canadain medical care was only to highlight that we are not restricted from access to testing because of red tape, insurance, funding, access to services or cutbacks. We are fortunate enough to just be able to request these services and often get what we want. My family dr put up a bigger fight to keep my dd off ADHD meds than she did giving me access to a Neurologist and MRI's. When we ask for services not much else comes into play other than does the situation warrant it? If there is any sort of gray area they just go ahead and check for the sake of it.

Fair enough. Can you specifically relate to me what I have said about dd that concerns you? Specifics? Things that I have discussed that don't seem "explained away" to you by all that she has going on?

Kat w that was very courageous of you to share your story and be vulnerable like that. Thank you.

Thanks! Agree completely. I feel really comfortable with the fact that his thoughts were in line with what we have heard from others.

I think I am getting a better idea of what is happening here and I am becoming less confused. Kat W - based on what you are saying here now - I understand that your concern is a knee-jerk reaction to your own situation and not mine. I get that. I am not entirely certain of the entirety of the situation you are in - partly because I am new here and partly because I suck at remembering details - but I can imagine that some of the things you have experienced have been traumatic for you and that you might have some lingering unresolved issues about that. I can appreciate that you wish you had caught things sooner and perhaps that regret has clouded your perception of my situation. Thank you for doing your best to inform me of how hindsight is 20/20 and that only medical tests can definitively rule out the possibilities. I do appreciate that you believe you have my best interest at heart. At *this* point in time we are going to see how all the new changes play out (glasses, FM system) and keep an eye on anything concerning. I am also going to FINALLY start taking seriously the concept that my child could be actually gifted with exception and see if that info changes things for her. Again this is something that I have heard repeatedly buy was not in line with my perception of gifted. I can see that I need to educate myself on how complicated gifted can be.