Gifted Issues Discussion homepage Forums Twice Exceptional Not wanting to borrow trouble...but question

That's a very frustrating situation. Good for you for persisting until you got answers.

Yeah, I would just really like to Get her. I totally worry about the misdiagnosis thing, I feel it happened with me as a child. I was identified as HG+ and later with anxiety, depression, OCD...and now that I have started to read, Aspergers fit me to a T then and still does. It just wasn't diagnosed hardly at all then. Anyway, I have been trying to understand her since she was an infant. She had a favorite song by 2 months, that she remembers to this day that it made her feel better even though we have never told her that. She was always ON even though she was a premie. I remember at 5 months reading a book about Spirited kids, trying to understand why she never slept, was always on, and was nothing like any of the children we knew and why none of the parenting advice from other mom's and from books never worked for her.

About the travel limitations, we are on an island in the Aleutian Chain in the middle of the Bering Sea. The only way off is plane, and well it is $1000 a person just to get to Anchorage, so travel right now is very limited option. We are going to Louisiana to see my mom this spring though. Before we moved from PA to her, DD was identified by a Developmental Pediatrician as PG, who recommended homeschooling at the time if we stayed in that district and said to prepare for college level material by the age of 10 or so, and we had some testing done with an education specialist who spesialized in gifted kids. So we currently know Verbal IQ, but because of her age have not had her fully assessed. We also know she ceilinged out on the PPVT and at age 3.2 had a verbal receptive age equivilent of 10 years 11 months.

I guess a lot of my concerns stem from her actions and I have no way of knowing what is normal and not...what is just a quirk and what is something more. She uses these made up words and phrases, well typically they are not made up but from obscure phrases in a movie or a TV show (and she only gets about 30 mins of TV a day) but for example, she uses terms like goozymahokas (which apparently she states Candance says on one episode of Phineus and Ferb)and many many other phrase, but they are completely out of context.... and she will just say DUCK randomly when she is uncomfortable with the situation or if someone is talking to her in public and she is uncomfortable. So all of that with the rigid rigid ridgidness she insists on for everything, and the way she yells at others when they don't do things exactly right, especially in her play, and the fact that she plans whole senarios in her head and gets extreamly distraught by them (which I did to) worries me. For example, tonight, well she was in the childcare at the PCR while I was in my knitting group, and when I went to get her, one of the ladies in knitting gave her a piece of chocolate, and asked DD if she wanted her to open it. So DD handed it to her, but then it dropped on the floor when dd was playing and she had a HUGE meltdown about it being open and that she never wanted it opened in the first place, and that she wanted to eat it at home not there. When I finally calmed her down and left, it started right back in the car, but this time it was about the fact that
Dad will never believe me when I tell him the shape. He will never belive it was a christmas tree now, and I can't draw it cause I wont be able to draw the humps, and if I tell dad he will think a christmas tree with balls on it, and he won't believe me. And it is the truth and her wont believe me and I never wanted it opened in the firts place, and now Dad wont believe me!" Oh my it went on for the entire car ride home no matter what I said. She awfulized and awfulized.

Anyway, I love her, love the way she thinks as it always surprises me LOL, I just don't want her to have as many problems as I did growing up because the issues were never found out until I was much older. Thanks for all the advice

She sounds like a wonderful and intense kid and I can see why you are struggling to sort this out. A lot of it sounds familiar to me.

Are you aware it may be possible to get a phone consultation? Given your remote location and your need to plan for a potential visit this spring this might be a good time to give that at try. One possibility might be Dr. Ed Amend. He's one of the authors of the misdiagnosis/dual diagnosis book and has a lot of experience with kids with highly gifted/AS kids. http://www.amendpsych.com/ http://www.sengifted.org/articles_learning/Amend_AnInterview.shtml

Also, I'm wondering if it might be a good idea to start a separate thread with a request for any 2E specialists near Louisiana and see if anyone from the area can suggest someone.

I hope you can find answers.

Passthepotatoes-
Hmm, I was not aware that it is possible for phone consultations. How does one go about that? And yep, I think you are right, need to start a thread for 2E specialists near where we are going this spring. Off to do that now.

On another note, I found some checklists for aspergers, and I am printing them out, not noting what they are for and asking Dh to fill one out this weekend, a friend of mine who has spent a great deal of time with DD, and my mom, as well as myself so I can get an more unbias view of what may be going on.

Thanks for all the help.

Wait... stop the train... We were told (by SLP) there's no possibility that DS has aspergers b/c his immaginative play is on target. Ansley is the one who gets frustrated b/c she's way into complex imaginative play, isn't she?

We're wondering a bit about sensory integration stuff, which is still kinda spectrummy, but not the same. Treatment for that seems to be hugs and cuddles, and answering questions using adjectives. So I've started doing that a bit more consiously with DS. It's can't HURT, can it -- extra cuddles and yummy adjectives (DS doesn't do eye contact quite normally, and has started showing wierd reactions to sounds, and sometimes squinting or covering his eyes -- it's very cute. He sees/hears dogs at about a 1km radius. I can only tell he really heard it because when we meet the dog later, I recognise the bark)

(I found out recently I really did meet the autism criteria, not aspergers when I was (mis)diagnosed, and DH is aspie, so... we were concerned, even when DS was just a splat on my uterine wall)

-Mich

I really do like the chance to chat on here... It's nice to think things through fron a different, and less naval-gazing perspective. Ppl here actaully worry about some of the same stuff as me. Wierd.

Amazedmom, take the online checklists with a grain of salt; no substitute for expert evaluation.

Imaginative play: this issue too requires expert teasing out. It is a mistake to think that people with AS have no imaginative play at all. Some kids with AS actually have elaborate fantasy worlds and imaginative play. The difference between these and typical kids is usually that the play is heavily scripted and inflexible (others can't participate unless they are "doing it right")-- or highly repetitive, or both. See Sohn and Grayson's book on the "fantasy boy" type of AS.

DeeDee

Mich- Yep you are right which is the one thing that doesnt fit...Although her play, while imaginative, it can be extreamly repatative and often comes from something she has seen, read, or heard about. For example, she was the virgin Mary while my mom was here, and we had to be the inn keepers and we had to start over upteen times because we didn't do it exactly right, however once we did, she played the same thing (put a bowl in her shirt, knock on the door, ask for room, we say no, tell her about the stable, She asks if it is to small, she goes and has a baby, brings out the baby doll while bowl drops out of dress, then comes and says "look at my baby" we say wow, whats his name, Jesus she says, then we had to ask how she named him that, and she says "An angel of the lord told me to" and does a whole speel) Then she does this over again from start to finsh for an entire hour or more....more than 30 times the exact same thing. This happens ALL the time.

I alternate between ADHD (but she can concentrate and focus when she wants, but she has to be doing other things to. DH and I have ALWAYS said, while she can do any puzzle, she probably couldn't do the simplest one if you made her sit still and be quite during it. Even when she is focused on a task, she is standing on one leg, twirling around, singing constantly, or talking about something that has nothing to do with the thing she is doing), Aspergers, but she plays and doesn't fit that 100 percent I dont think, but I don't know, Seneory issues, I have no clue. I was a family therapist before having her and I just know something is different, but I have no way of knowing how to seperate it from the giftedness

There is a chance of having her evaluated her. My teacher friend said the psych for the school district is comming end of Jan. She is talking to the couselor and sped teacher tomorrow to see if we can get Ansley eval by them even though she is not in the school system. OUr choice right now since they do offer preschool, but its not a good fit. It is an academic based where they seperate 3 and 4, and the 4's are just learning letters, and the 3's learn colors and shapes. DD asked not to go after observing. She would much rather spend the day doing 2nd grade math, and reading chapter books, and 3rd grade science. So I dont know if they have to eval or not. Hopefully I will know something tomorrow either way.

It's hard to know what sort of play is to be expected for your daughter, age appropriate? Academic level appropriate? But I don't think that her sort of imaginative play 'rules out' AS in any way. Many people with AS also have sensory issues as well as the behaviors of ADHD. The problem is that although people expect folks with AS to have 'above average IQ' there is basically almost no data on folks who have PG range IQs. I would read Dee Lovecky's book 'Different Minds' as she is one who has studied AS and ADHD in gifted kids.

I see ADHD as a 'slower than normal' developmental path in developing executive function skills. Having the diagnosis of ADHD says nothing about where the person will finish their growth, only that they are a few years behind in this area. But it did take me into my 40s to get the routines down to keep a decluttered home.

Likewise I've read that AS is a 'slower than normal' developmental path in learning certain social skills. You may have experienced this yourself in your own life. We all always grow and change - hopefully into a fuller version of ourselves, but not in a straight line path. If your daughter does have 'clinically diagnosable' AS that says nothing about what she will be like at age 10, 20 or 30. Especially with her LOG. Realize that all the future predicting works pretty well for folks who are within a standard deviation of normal IQ, so the experts won't even know that they don't know.

If she is doing 3rd grade math at her age, you know for sure that she isn't following any 'typical' path of development in at least that one area. I would read up on AS, but always take it with a grain of salt about what the future will bring. Concentrate on learning about how other families have handled various issues well in the moment.

When my son was first IQ tested he was misdiagnosed as having NVLD. I do resent it that my psychologist didn't level with me that my son was an outlier and send me right away to a gifted specialist, but I learn tons of 'super-parenting' tricks from those books, even though it was a misdiagnosis!

As a baby and preschooler, my son made it very clear how he wanted things. I wish you all had been around to remind me that because he is good at communicating what he wants isn't a reason to avoid the tantrum and always do it his way. It might have been that he 'needed' lots of practice in 'handling his strong feelings.' But that isn't the person I was then, and I had no gifted support at all until he was 8 years old. Now that I realize that we can be completely close and connected without having to steer around so much of life, he's feeling stronger about himself, and my 'job'as Mom is totally different. As always it's a slow path from where you are to where you are going.

Love and More Love,
Grinity

(I was a little worried someone was going to say something like that.)

It seems like it would be in the school's best interest to get an idea of how they could help your dd now for planning purposes even though she is not "old" enough.

No matter what her dx could be, if any, I wonder if OT would help. It certainly gives kids the chance to play in a safe environment. Something like the How Does Your Engine Run program could help regulate her energy levels. There is a book available on Amazon called Take Five that uses the HDYER ideas which I found helpful when we were doing supplemental OT at home last summer.

Modulated listening therapy seems to help with eye contact and regulation issues. It needs to be overseen by an OT, but the therapy is done at home. Maybe there would be a way to have the school district set you up with long distance OT and meet over Skype and oversee some programs like this which are helpful for broad populations of kids.