So, how do you know? (long)

[lovemywhirlygirls]

I have been suspicious that there is "something" going on with my oldest daughter...personality wise/learning disability....I don't know. I know so many of you have kiddos with very obvious and/or severe issues. Sometimes things feel "off" but those things could pretty easily be explained away. I would appreciate your thoughts you may have.

 

dd14--oldest of 3 girls

Perfectionist tendencies (didn't want to "learn" to read because she felt she just was supposed to just "know" how to do it, doesn't like to try new things for fear of being embarrassed if she doesn't do it the best)

 

Control issues--likes to be the one in charge and say how everything will go. Does not deal well when anyone deviates from plan.

 

Doesn't like surprises--they make her mad...even "good" surprises like knowing we're going to go do something fun this afternoon--but it's a surprise. Gets livid and pitches a fit until you tell her what it is.

 

Very black/white....does not deal well with "grey" ideas.

 

Very justice minded--but not always justice as is generally understood...could be as SHE sees it.

 

When she was in school, we got notes home about how she didn't transition well. She NEEDED to finish a work page or an art project or something before she could move onto something else.

 

When taking tests, she "can't" skip over the questions she doesn't know the answers to in order to go and answer all of the ones she DOES know. After some poor grades and LOTS and LOTS of talking/explaining/coaching, this is getting better. She still gets stuck (eating up time), but is usually able to proceed.

 

She pitched a fit on Christmas day because all three girls got some Barbie furniture from Santa (group gift). She tried to commandeer parts of it to call it her own because she was freaked out about the others girls losing the little parts. She couldn't deal with the idea that parts might go missing.

 

Things need to go exactly how she expects them to go or she gets upset/pitches a fit/gets angry or something. If I tell her that we plan to go shopping tomorrow afternoon and something comes up so that we can't go shopping she gets very upset because "you SAID we were going shopping!"

 

She has food texture issues. Huge tonsils. Can't do grape skins, certain breads, etc. Food can't get even the slightest bit cold or she refuses to eat it. She has a good appetite and it willing to try new things.

 

She has clothing issues. Dressing rooms cause issues. The clothing changes temperature when she takes them off to put other clothes on. Socks are issues, tags are issues, texture issues. That said, a lot of clothing is not an issue at all.

 

She is very lazy and will have anyone she can get wait on her hand and foot.

 

She does not like to work hard and will tell you so, unashamed.

 

She has a pretty big fear of the dark. When she goes outside to feed out outside dogs at night, all kinds of lights have to be on and she props the door open (it CAN'T be closed) while she's out there.

 

She is very self-centered and has narcissistic tendencies.

 

She can't learn her math facts to save her soul. She can DO math when she has the formula or when she's just been taught something, but she has a terrible time retaining what she's learned. (Learning issues or since math and science are not her thing....does she not see the importance/have the desire to retain the info??)

 

She gets "stuck" a lot--in frustration with school things (math, science, writing) and can't seem to get UNstuck. She puts her body into very unusual positions during these little fits. (She never does this in public though she admits fear that she might do this at her tutorial.)

 

Etc.

 

Now, at the same time as all of this is present, if you met her, you would not notice anything except maybe some self-importance and the fact that she is can get frustrated by people/situations. So, I can't tell if I'm dealing with a hormonal, self-centered, teen or if there is something else going on.

 

My biggest concerns for her is that she will alienate "friends" by taking advantage of them and being all about her. I can see her being very lonely as an adult.

 

I would love to have some coping mechanisms that we can teach her for those times that she gets stuck.

 

I would love to find a way to have her be able to consider others more.

 

I am concerned about her relationship with her two sisters as she is alienating herself from them by her poor treatment of them. (Not considering them, taking advantage, manipulation, etc. She does this all out of what seems like "normal" to her.)

 

She is great with little kids, babysits, volunteers at church, etc. She is great with art and creative things, has a lovely voice and is "musical"--though she doesn't play an instrument because it frustrates her that she would have to learn. She just wants to "know."

 

There is more, but I'm out of time. What would you do if you were in my shoes?

 

Got family coming in from out of town tonight. Oh how I'd love to go to bed early! I'll check back when I can. Thank you in advance for your thoughts.

[Tohru]

:grouphug:

 

I really don't know anything about disorders, so I'd just assume it was her personality and character.

 

As far as alienating people - sometimes one needs to learn by themselves how to be a good friend. Then there are some people that really do just prefer to be alone the majority of the time.

[misidawnrn]

Take this all with a grain of salt because I am not an expert but some of her traits might be related to being the oldest and some maybe something like asperger's. I am the oldest child of 5 and she sounds a lot like me in the bossy part. I "think" I have gotten better about not having control but I do like things to go as I have planned. I don't think I have problems with other stuff like learning new things. I actually like to learn them and just taught myself how to knit because I wanted to and I have tried about 4 times earlier to teach myself and couldn't get it so I persisted until I got it. I am not too particular about clothes but noise is my arch enemy...I hate tons of background noise, screaming, squealing, radios/tvs up to loud, etc. Our TV seems to have a point that when it hits it, it is just.too.much! I HATE when my kids stand next to me and talk in my ear. It is like they are yelling in a megaphone. DD-8 just did it yesterday at Xmas because she was standing behind me chair. GRATING on my nerves!!!!

I think helping her learn social norms and how to deal with her issues are the key to her success in life. I like a new restaurant in town and the first time we went there, I almost left because the music was soooo loud I couldn't hear my DH talking. The 2nd time I went, same loud music, I asked the manager to turn it down and he did. We have a Macoroni Grill here and I can't eat there. It sounds like a 3 year old with a spoon and metal pots, the kitchen noise is crazy. I will not go back since that is something you can't turn down.

I have learned to go with the flow better and I wouldn't throw a fit, at home or in public but it would just eat at me and cause anxiety if I knew things weren't going to plan. Take for instance, DH and I went to San Antonio last year for DSD's boot camp grad. I had my maps all printed from motel to base, motel to Sea World, etc. I couldn't look at the maps, watch the signs, other cars and take DH's driving. The first stop we did was stop and buy a Garmin GPS so it could tell us where to go. That about made me want to never leave my house again, it was soooo anxiety inducing.

 

Good luck!

[Bang!Zoom!]

Some of your comments remind me of my oldest daughter.

 

She was built to be a leader, an organizer and a savior to those things she chose to commit to.

 

With that one, she has to sense a two-way street of authority and respect *before* the kind/emotional/sensitive parts of her personality comes out.

 

Martial arts, joining a cause, finding a peer-group(s) she found to be "on her level" were really great things.

 

Just out of plain curiosity, how does she relate to animals (rather than people)...is there a vast difference?

 

That was a big tip-off with my oldest.

[cin]

Sounds a LOT like my daughter, who was formally diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified (aka PDD-NOS) and Anticipatory Anxiety, and Executive Skills Dysfunction.

 

The only thing that doesn't fit in with my DD is the lazy. I thought DD was lazy for a while, but I've realized that, in her case, she has perfectionist tendencies, which cause her to NOT want to do things that she thinks she cannot do correctly. AND with the Executive Skills, she has almost NO working memory. She cannot remember more than 2 commands.

 

We also have the sensory issues, mainly with food, but slimy things also. Play Dough is torture for her. And that goop that you make with corn starch and water? Oh. My. Goodness. It'd be easier to put bamboo splinters under her fingernails.

 

What has worked for us? DD is off of red and yellow food coloring. It turned her into a lunatic. Serious Meltdowns; headbanging, screaming, the whole 9 yards. Secondly, she takes 4 Omega oils every day. And let me tell you, we can tell if she hasn't taken them.

 

But we've also had her evaluated by an OT and a Child Psychiatrist. The OT has worked with us extensively with the sensory, coordination, and some of the executive skills. The Child Psych gave us the formal PDD diagnosis, and the OT has also helped us a bit with coping mechanisms. In addition, DD is in counseling. She is helping with all the emotional and anxiety issues.

 

Hope this helps. It's a bit choppy because, well, I have 2 ballerinas screaming 'look mom, look at me!' every other word. >sigh<

[mommaduck]

I have been suspicious that there is "something" going on with my oldest daughter...personality wise/learning disability....I don't know. I know so many of you have kiddos with very obvious and/or severe issues. Sometimes things feel "off" but those things could pretty easily be explained away. I would appreciate your thoughts you may have.

 

dd14--oldest of 3 girls

Perfectionist tendencies (didn't want to "learn" to read because she felt she just was supposed to just "know" how to do it, doesn't like to try new things for fear of being embarrassed if she doesn't do it the best)

 

Control issues--likes to be the one in charge and say how everything will go. Does not deal well when anyone deviates from plan.

 

Doesn't like surprises--they make her mad...even "good" surprises like knowing we're going to go do something fun this afternoon--but it's a surprise. Gets livid and pitches a fit until you tell her what it is.

 

Very black/white....does not deal well with "grey" ideas.

 

Very justice minded--but not always justice as is generally understood...could be as SHE sees it.

 

When she was in school, we got notes home about how she didn't transition well. She NEEDED to finish a work page or an art project or something before she could move onto something else.

 

When taking tests, she "can't" skip over the questions she doesn't know the answers to in order to go and answer all of the ones she DOES know. After some poor grades and LOTS and LOTS of talking/explaining/coaching, this is getting better. She still gets stuck (eating up time), but is usually able to proceed.

 

She pitched a fit on Christmas day because all three girls got some Barbie furniture from Santa (group gift). She tried to commandeer parts of it to call it her own because she was freaked out about the others girls losing the little parts. She couldn't deal with the idea that parts might go missing.

 

Things need to go exactly how she expects them to go or she gets upset/pitches a fit/gets angry or something. If I tell her that we plan to go shopping tomorrow afternoon and something comes up so that we can't go shopping she gets very upset because "you SAID we were going shopping!"

 

She has food texture issues. Huge tonsils. Can't do grape skins, certain breads, etc. Food can't get even the slightest bit cold or she refuses to eat it. She has a good appetite and it willing to try new things.

 

She has clothing issues. Dressing rooms cause issues. The clothing changes temperature when she takes them off to put other clothes on. Socks are issues, tags are issues, texture issues. That said, a lot of clothing is not an issue at all.

 

She is very lazy and will have anyone she can get wait on her hand and foot.

 

She does not like to work hard and will tell you so, unashamed.

 

She has a pretty big fear of the dark. When she goes outside to feed out outside dogs at night, all kinds of lights have to be on and she props the door open (it CAN'T be closed) while she's out there.

 

She is very self-centered and has narcissistic tendencies.

 

She can't learn her math facts to save her soul. She can DO math when she has the formula or when she's just been taught something, but she has a terrible time retaining what she's learned. (Learning issues or since math and science are not her thing....does she not see the importance/have the desire to retain the info??)

 

She gets "stuck" a lot--in frustration with school things (math, science, writing) and can't seem to get UNstuck. She puts her body into very unusual positions during these little fits. (She never does this in public though she admits fear that she might do this at her tutorial.)

 

Etc.

 

Now, at the same time as all of this is present, if you met her, you would not notice anything except maybe some self-importance and the fact that she is can get frustrated by people/situations. So, I can't tell if I'm dealing with a hormonal, self-centered, teen or if there is something else going on.

 

My biggest concerns for her is that she will alienate "friends" by taking advantage of them and being all about her. I can see her being very lonely as an adult.

 

I would love to have some coping mechanisms that we can teach her for those times that she gets stuck.

 

I would love to find a way to have her be able to consider others more.

 

I am concerned about her relationship with her two sisters as she is alienating herself from them by her poor treatment of them. (Not considering them, taking advantage, manipulation, etc. She does this all out of what seems like "normal" to her.)

 

She is great with little kids, babysits, volunteers at church, etc. She is great with art and creative things, has a lovely voice and is "musical"--though she doesn't play an instrument because it frustrates her that she would have to learn. She just wants to "know."

 

There is more, but I'm out of time. What would you do if you were in my shoes?

 

Got family coming in from out of town tonight. Oh how I'd love to go to bed early! I'll check back when I can. Thank you in advance for your thoughts.

Wow!You just described one of mine!

[Ottakee]

You might also want to post in the learning challenges board for more information.

 

Some of what you say could fit with Aspergers.

 

You do mention very large tonsils. How is her sleep? Any snoring, restlessness, being tired despite sleeping enough, etc? Sleep issues can just bring on a host of other things and IF indicated, removing her tonsils might help some of the behavioral things---or at least help her sleep better if that is an issue.

[bettyandbob]

Well I know because he was obviously different from the beginning. Lots of positive and negative differences from age 2. Positive differences made adults say "Wow, did he just say/do/know that?" Negative differences started all kinds of grumbling from other parents/adults because he looked "normal" and he was so obviously smart he should know better. Life was incredibly difficult for our family from the beginning. I couldn't ignore ine motor issues and paid out of pocket for ot. But there was more the problem was so dominant I had to do more research seek testing. Some was done earlier, but most extensive was done at age 7.

 

No way we could have survived to age 14, proceeding like he was a typical child. Or even pretending/ignoring/brushing under the rug.

 

this is just based on my experience, but I think if you've gotten this far, your dd may have some mild issues and mild issues mixed with adolescence can suck. You could seek an evaluation and use that to help adjust how you structure your behavior with her. You could research similar profiles and try to make adjustments based on your research and follow with evaluations if necessary.

 

If evaluating is something you want to do it am be hard to get it done as she ages because she has to go along with it. or maybe she knows she's different and will jump at being evaluated because she's struggling and knows she's different.

 

Just my thoughts.

[melissel]

\You do mention very large tonsils. How is her sleep? Any snoring, restlessness, being tired despite sleeping enough, etc? Sleep issues can just bring on a host of other things and IF indicated, removing her tonsils might help some of the behavioral things---or at least help her sleep better if that is an issue.

 

I was thinking the same thing. I have heard enough stories to automatically think of three things when I hear a kid described this way: 1) Eliminate gluten; 2) Eliminate dairy; 3) Get a sleep study.

[jhschool]

Hello

 

Except that I love to work hard (at things I

like, not at house chores!), am very good

at math, and I'm not

afraid of the dark (I love the dark!), you have

described me exactly! Kind of scary, in fact, how

like your kid I am!

 

I had tons of friends--starting in college, not before.

I had one best friend for two years in 4th grade though. Went

to a top college and studied engineering.

Went to a top grad school. Am happily

married (14 years) with the best kid in the world.

 

Have a few extremely good friends.

 

Sorry--I have no suggestions for you. But she could very

well turn out all right!!!

[Parrothead]

The sensory issues sound like typical sensory issues. All the rest sounds like a lawyer in the making.

 

If you are truly concerned, talk to her doctor and ask for a referral to an OT. She may learn some coping skills from a good OT.

[lovemywhirlygirls]

You do mention very large tonsils. How is her sleep? Any snoring, restlessness, being tired despite sleeping enough, etc? Sleep issues can just bring on a host of other things and IF indicated, removing her tonsils might help some of the behavioral things---or at least help her sleep better if that is an issue.

 

Thank you for asking. She has not had any sleep issues. She goes to her room around 10 and is asleep by 11 most nights and would sleep until 11 if I let her.....

 

My DH has just taken his 2nd sleep study in recent months and was diagnosed with sleep apnea and is on a CPAP machine. Knowing she has large tonsils, we are keeping an eye on this.

[gardenmom5]

It sounds like high-functioning autism spectrum or at least sensory processing disorder. I would have her evaluated by a developmental pscyhologist who deals with autism spectrum in GIRLS. (they present differently than boys, sometimes very much so.). Push as hard as you need to find one. call your local childrens hospital for a list of dr's who do that.

[PhotoGal]

Could she possibly be gifted - maybe along with something else? A lot of the perfectionism (especially wanting to just know things instead of learn them) and the sensitivity to surroundings that you describe would fit.

[lovemywhirlygirls]

Thanks to all of you for taking the time to share your thoughts and your hugs. Right now, when the house is quiet and all are at rest, I feel silly for even posting. When she's "stuck" or so completely unaware of what others think, feel, want, need...I feel the need to DO something. I've talked my head off trying to teach and coach and lead. I guess I will just keep praying and doing the best I can in each moment.

 

In any case, very grateful for your thoughts.

[lovemywhirlygirls]

It sounds like high-functioning autism spectrum or at least sensory processing disorder. I would have her evaluated by a developmental pscyhologist who deals with autism spectrum in GIRLS. (they present differently than boys, sometimes very much so.). Push as hard as you need to find one. call your local childrens hospital for a list of dr's who do that.

 

Could you briefly tell me what such an evaluation entails? What kind of cost is associated with an evaluation?

[OrganicAnn]

With the many issues you describe, I would have her tested by a neuro-psychologist (or whoever can diagnosis various learning disorders). We had some issues with my DD and was given some information that it "may" be ADD or "may" be dyslexia. We were glad to have spent the money on a real diagnosis, so that we weren't running around treating problems that she didn't really have and missing what was truly going on. I know some people are against testing because the fear having a child labeled. But the truth is you and everyone else have given her labels, so you might as well have the right labels.

 

Good luck.

[sparrow]

Some things (OK, a lot) sound like my son, also diagnosed with PDD-NOS. He can pass as neuro-typical a lot of the time, until he gets obsessed with something, in a good, or BAD, way.

 

Goodness, the justice. I sometimes worry I'm raising a vigilante.

 

He's doing amazingly well in scouts. Does your daughter have a social outlet where she feels connected and accepted? It's something he needed, we couldn't find elsewhere, and something he's thriving in. I honestly didn't expect it from scouts, but I'm glad we tried it. He can obsess on Eagle. There could be worse things :001_smile:.

 

You can only do the best you can. My son really needs schedules and needs me present during all of his school work. Once you figure all of the little hang-ups, and note work-arounds, it makes things SO much easier. Pick. Your. Battles.

[gardenmom5]

Could you briefly tell me what such an evaluation entails? What kind of cost is associated with an evaluation?

 

depending upon where you live, it's possible to do that through the school district, and then it is free - but it is not going to be a "medical" diagnosis. given that she is already 14, the school district probably won't even consider her.

 

It is not cheap - BUT, even if she is homeschooled, she is then entitled to any therapy a medical provider deems she needs if the school district offers it, they have to offer it to her.

 

I didn't go the private psychologist route. I did the medical school and it was a full team work-up that included: a nutritionist, a dev ped, a speech/language pathologist, an occupational therapist (the school district also did a seperate physical therapist), and a psychologist. the school district also had their own team (no nutritionist) evaluate him, and the only one who is giving me concern is the OT. but the medical school's OT recommendation trumps the school district's OT recs. we meet next month with the school district to see what services they offer. I may have to push them for the medical school's OT recs to be followed.

 

we have a very (very) high deductible, so it was all out of pocket for him. If we'd had a lower deductable, some of it would have been covered.

 

some things that are helpful:

yoga - it helps to integrate the nervous system with the brain. especially good for dealing with anxiety disorder.

martial arts - similar (as long as she doesn't have aggressive tendencies.)

swimming - very strong bilateral exercise. One ASD clinic director has stated she thinks it is *the* best exercise for ASD kids.

cranial-sacral therapy, which is a particular style of chiropractic.

tomatis/integrated listening therapy. it sounds bizzare, ultra-high frequency sound waves, but it helped my son. not covered by insurance.

 

a pp mentioned PDD-NOS, I think it is also an ASD. another mentioned gluten sensitivity - that is also a common issue, as are casein/yeast/soy. food dyes, and nitrates too. not always, and not always everything, but enough it warrants consideration.

 

given the fact she has swollen tonsils, that is indicative her body's immune system is being taxed. food sensitivities could cause that.

 

for things you can do at home: you can look at sensory-processing-disorder.com has some good information on the sensory stuff. the out of sync child, and the out of sync child has fun by Carol Kranowitz.

If she is bothered by noise (and she may not be aware of it), try ear plugs. Just hand her some, have her wear them for awhile, and see if it is calming for her. if auditory stimulation is too much for her, the ear plugs will help.

[sparrow]

Could you briefly tell me what such an evaluation entails? What kind of cost is associated with an evaluation?

 

My son was evaluated through our local school system at no cost to us. The testing entailed Woodcock-Johnson and WISC IV (google for more info) among about a dozen others. I was also given paperwork to record my concerns and observations. The testing took place over 3 days, about 4-5 hours a day, with breaks given as needed.

 

As a homeschooling mom, I was very worried that they would blame me for any deficiencies they were seeing. The opposite happened. They felt he was receiving an excellent education at home and that with his LDs he would do poorly in a classroom setting. I was stunned. It was a basic, "keep doing what you're doing, because you're doing something right" pep talk when my husband and I went in for the results :001_huh:. I just don't think schools have the resources and, most importantly, the people, to deal with the special needs and LDs they are seeing today.

 

My son is extremely bright, testing showed us that, and he charmed the socks off the psychologists, because that's what he does. Overall, would I go through testing again? Knowing what I know now, the answer is no. For us, it basically confirmed what we knew. He's bright and quirky with learning disabilities. We still have to find work-arounds for his education every day. It sometimes puts a burden on me that the testing was done because he can pass as neuro-typical. Have I ruined job opportunities in the future or have I made it easier for him to get help in college, if he needs it :confused: I guess time will tell.

[lovemywhirlygirls]

Wow. Thank you All! I am so grateful for the thoughtful responses. I have read and printed them. I feel a bit overwhelmed that the responses very much echo my own processing....some suggesting that she is a teen in full bloom and others suggesting that there may be something there worth checking into. I have much to think about and some great info to consider.

[OLG]

Could she possibly be gifted - maybe along with something else? A lot of the perfectionism (especially wanting to just know things instead of learn them) and the sensitivity to surroundings that you describe would fit.

 

:iagree:

 

Mix this in with being the oldest and a teen and it doesn't raise too man red flags. Maybe she misses that time of being the only child somewhat too. Could be a reaching out for 'space', attention. Do you own a pet?

[HomeOnTheRanch]

I don't have time to read all the replies, but you've described my son with sensory processing disorder. He has a very mild case (compared to some I've read about) and most people have no clue that he has issues. About 2 years ago he was dx'd with allergies to wheat, rye, and barley (but not gluten...ha!), so he went gf and has done so much better. We just now started him on magnesium and I'm still in the wait-and-see mode on that. His main issues now are "laziness" and lack of self control. Most folks would say he is a typical 14yo boy, but no, it is more than that.

[jujsky]

 

It is not cheap - BUT, even if she is homeschooled, she is then entitled to any therapy a medical provider deems she needs if the school district offers it, they have to offer it to her.

 

 

 

This actually varies by state, and sometimes by district. In NH, for example, a school is required to evaluate a child for learning disabilities, even if they're homeschooled or go to private school, but they are NOT required to provide special ed services. We are going through this process with our son right now because his pediatrician wants him to have a neuropsych evaluation, but the cost is high ($4,500 at Boston Children's Hospital) and insurance is being cryptic whether or not they'll pay for it. We got the billing code from BCH, and the insurance document is written in such a way as, "We cover this for medical reasons. We will cover educational testing if deemed medically necessary, except when we don't." That's not the exact wording, but reading between the lines, that's what they're saying. Many insurance companies will not cover the educational portion of neuropsych testing, but we can take copies of the educational tests the school is performing and bring those with us when he has his neuropsych appointment. The school told us that the same tests are generally done, and if they're conducted within a year, the neuropsych will have to use the school's results and not retest because it invalidates the results somehow. Hopefully since that portion will already be done for free through the school, the rest of the testing will be covered by insurance. If you do go for a full-fledged neuropsych, going the school route first can help save you money. Some school districts/states will pay for a complete neuropsych, so that's worth looking into as well.

 

As I said, in NH and many other states, the schools are not required to offer services after testing. If the school OT feels that he needs to go through occupational therapy, for example (I suspect he will -- he needed it when he was smaller) the school won't do that for him -- we'll have to go elsewhere and have insurance pay for it.

 

I got started by contacting the Superintendent of my school district, who put me in touch with the district Special Ed Coordinator. She put me in contact with my local school. My experience has been very, very positive so far. I was afraid they would jerk me around since we homeschool and make us wait as long as possible required by law before they saw us and dealt with us. They have been kind and very efficient. They met with us within 2 weeks of my initial call, and scheduled testing for the following week. He met twice with the school psychologist, and twice with the school's special ed teacher for testing the week before Christmas vacation. I know they've given him an IQ test, and the Woodcock-Johnson. I'm not sure what else they've done. He's meeting with the school's OT next week. Even though they will not offer us services, the team said they will offer us advice, techniques, and even supplies that will help. We'll discuss all of that at our team meeting in mid-January.

 

If you go this route, be organized. Bring in a list of concerns so you're not stumbling over yourself trying to remember things in a room of 8 strangers. Bring copies of work samples, any standardized tests you may have done, and any other evaluations she may have had in the past (we had speech and OT evaluations from a few years ago). If you make copies for them, they will especially like you. Our team was shocked in a good way when they asked if they could make copies of the papers I'd brought with me, and I said, "These are your copies." Seemed common sense to me to bring them, but I guess they deal with a lot of parents who lack that.

 

Another word on the neuropsych testing. If you pay for a private evaluation, get as much in writing from the insurance company as possible so you can fight them on it later when they suddenly decide not to pay. This was our advice from Boston Children's Hospital. They told us they constantly have insurance companies claim they will pay for it, only to jerk the patients around after the testing is done and refuse to pay all or a portion of it. Most insurance companies decide AFTER the testing is done whether or not they'll pay for all of it regardless of what they tell you up front. If a doctor thought you were diabetic and sent you for testing, and it turns out you weren't diabetic, you wouldn't have to pay for testing, right? You'd find out if the test was covered before you went through it, and the results are the results -- the test is a diagnositic tool. I've learned from my own beginning journey of this process and from talking to several friends/acquaintances who have had this done for their kids, that this is NOT how insurance companies deal with neuropsychs in most cases, even though it's a diagnositc tool. They generally decide AFTER they have the results just how much they will cover. Boston Children's bills insurance 9 units of the same code. Insurance may decide that since 1/3 of the testing was educational in nature, they're only going to cover 6 of those 9 units. Make sure you talk to your insurance company and get a confirmation number on the call. Have them e-mail you the portion of the insurance book that goes over the billing codes (get the billing codes in advance from the neuropsych) and make sure they go over it with you while you're on the phone. Start a file and keep a copy of everything. I'm completely expecting a fight with our insurance company even though they said that it sounds like the testing for DS is medically necessary and that the educational portion "should be" covered. Everyone I know in real life who went through this (3 other families) had to pay out of pocket for some portion of the testing -- anywhere from a few hundred to a few thousand dollars.

 

As for the labels, as another poster said, you're labeling your own kid in your mind right now anyway. Being stuck with a label was my mom's concern for my son too, but as I told her, I'd rather have him walk around for the rest of his life with a label and the help he needs to succeed than to not have that label, struggle, and go through life feeling like a failure and wondering what is wrong with him.

 

I wish you and your daughter well. Finding the answers isn't easy, but hopefully it will be worth it in the end.

[gardenmom5]

Have I ruined job opportunities in the future or have I made it easier for him to get help in college, if he needs it :confused: I guess time will tell.

 

school district testing does not have the same long term effects as medical testing. there are therapies they can do alongside homeschool.

 

I went the medical route because there are therapies my son needs (i.e. OT, social skills) the district offers. My experience with an older son was school districts do NOT want to offer therapy, no matter how needed, if they don't have to. because I went the medical route - the school district has to offer what is ordered if they do it for anyone else, even if they don't want to.

 

the school district people here have been supportive, except for the OT, who keeps saying "oh, he doesn't need that" - something the hospital's OT ordered. I expect a fight in that area.

Edited December 27, 2011 by gardenmom5

[Ester Maria]

Here is my take:

Perfectionist tendencies (didn't want to "learn" to read because she felt she just was supposed to just "know" how to do it, doesn't like to try new things for fear of being embarrassed if she doesn't do it the best)

Where does she stand intellectually and as regards her academic accomplishments? Gifted perfectionism is quite a common problem.

Control issues--likes to be the one in charge and say how everything will go. Does not deal well when anyone deviates from plan.

Common with (younger) teenagers, in my experience.

Doesn't like surprises--they make her mad...even "good" surprises like knowing we're going to go do something fun this afternoon--but it's a surprise. Gets livid and pitches a fit until you tell her what it is.

This one is a red flag, because of your last sentence. She should not be getting livid and throwing fits, i.e. reacting in a developmentally much younger way, even if she does not like. A more adequate teen response would be eye rolling, passive aggressive sabotaging, etc. So, I would keep an eye on it and consider just how unusual her reactions are. It may be that you are wording it more harshly than it really is, or it may be that she really has some maturity issues going on - and then you should consider whether, and to what extent, you can practice putting her into situations where she can deal with her frustrations on an appropriate scale, thus building her stamina and frustration tolerance in general.

Very black/white....does not deal well with "grey" ideas.

Very common. Many (younger) teenagers, if not most, suffer from fairly rigid thinking patterns in very surprising ways. It can strike us as odd compared to mental flexibility they show in ever more abstract school content, but especially when it comes to "moral inflexibility", I have observed that it is quite common.

Very justice minded--but not always justice as is generally understood...could be as SHE sees it.

This one would require further elaboration as I am not exactly sure what you are referring to.

When she was in school, we got notes home about how she didn't transition well. She NEEDED to finish a work page or an art project or something before she could move onto something else.

This is only another aspect of the ultimate need to be in control and do things "perfectly" as she sees. A childish feature, but not altogether absent among normal, healthy younger teenagers - there seems to be a certain subset of them who still behave that way.

When taking tests, she "can't" skip over the questions she doesn't know the answers to in order to go and answer all of the ones she DOES know. After some poor grades and LOTS and LOTS of talking/explaining/coaching, this is getting better. She still gets stuck (eating up time), but is usually able to proceed.

As the previous one.

It is very well that she is able to work on it. It means that she has the capacity of being more flexible than she is, she just does not exercise that capacity all the time. One bit at a time, things will fall into their places, but you might to consistently work with her on those things rather than expect them to happen naturally. Although, for very many kids it will happen perfectly naturally too.

She pitched a fit on Christmas day because all three girls got some Barbie furniture from Santa (group gift). She tried to commandeer parts of it to call it her own because she was freaked out about the others girls losing the little parts. She couldn't deal with the idea that parts might go missing.

Control issues.

Things need to go exactly how she expects them to go or she gets upset/pitches a fit/gets angry or something. If I tell her that we plan to go shopping tomorrow afternoon and something comes up so that we can't go shopping she gets very upset because "you SAID we were going shopping!"

I am trying to imagine the extent of those fits of hers. What you mention here is actually a fairly typical kind of teenage bickering, in my experience. The key for me has been not to sweat the small things and ignore, ignore, ignore. If she has real anger episodes, developmentally younger fits, etc., then it is something to worry about, but most young teenagers are quite fussy and quite "my way or the highway", often for no reason or very minor reasons.

She has food texture issues. Huge tonsils. Can't do grape skins, certain breads, etc. Food can't get even the slightest bit cold or she refuses to eat it. She has a good appetite and it willing to try new things.

Common. I would check that, though - have you thought about taking her for a thorough nutritionist evaluation (you would need to keep an extensive eating diary for several weeks first, then do complete bloodwork / allergy tests, etc., then allow for some more time for the changes suggested to kick in, so the whole process takes a while)?

She has clothing issues. Dressing rooms cause issues. The clothing changes temperature when she takes them off to put other clothes on. Socks are issues, tags are issues, texture issues. That said, a lot of clothing is not an issue at all.

I think some of those sensitivities are fairly mainstream. I know of very few people who do not have any clothing (or food, for that matter) sensitivities. I would reconsider this aspect: do you find it is really, quality-wise, something unusually problematic for her, or you might be blowing something fairly minor out of proportions?

She is very lazy and will have anyone she can get wait on her hand and foot.

Extremely common, both as a characteristic of being a teenager and as a core personality trait. Nothing pathological per se.

She does not like to work hard and will tell you so, unashamed.

Ditto for this.

She has a pretty big fear of the dark. When she goes outside to feed out outside dogs at night, all kinds of lights have to be on and she props the door open (it CAN'T be closed) while she's out there.

Common. I know kids - perfectly normal kids without issues - who still slept with a half-closed door and lights on in the corridor into their teenage years, as well as many older people who have a discomfort in dark. So, this one would not concern me at all.

She is very self-centered and has narcissistic tendencies.

A normal teenager. :D

She can't learn her math facts to save her soul. She can DO math when she has the formula or when she's just been taught something, but she has a terrible time retaining what she's learned. (Learning issues or since math and science are not her thing....does she not see the importance/have the desire to retain the info??)

Sounds like she does not understand things (if she needs a formula to be able to start solving a problem, assuming she does typical grade level work). There is no retention without understanding. What are her grades like? Have you considered switching her to a more problem-based program which would force her to think through problems rather than mechnically fill in the numbers in the formulae? Based on this sole piece of information, she sounds like many kids who simply have conceptual issues with what they learn, whether due to specifics of teaching or to not understanding.

She gets "stuck" a lot--in frustration with school things (math, science, writing) and can't seem to get UNstuck. She puts her body into very unusual positions during these little fits. (She never does this in public though she admits fear that she might do this at her tutorial.)

If she does not do it in public, that means that she has an option of not doing it, i.e. the capacity to not do it is there, even if she does not exercise it all the time - so it is not something to worry about, IMO. I would allow her to cope with frustration in acceptable ways at home, if it helps her (I am not sure about the details here or whether I am reading you correctly).

 

Overall, considering all of it together based on this limited information, I would say that you are dealing with a normal, hormonal teen, who maybe has a personal quirk or two - but then again, who doesn't? I may be wrong, but I honestly believe that if something were TRULY off - as in BIG TIME off - you would have noticed it way before, and of course that you would have addressed professionally anything you suspected pathological. She sounds as though some of those might be core personality issues and struggles of the kind people of her disposition tend to have (perfectionism, etc.), perhaps aggravated by puberty and hormonal situation. Based on all you describe, she is capable of coping (and even controlling and working on some of her issues), but as any other person, she has still got a lot of growing to do. It is also great that she has a way to channel her energy artistically and that she is good with people. That probably means that these issues are minor in the overall picture, not handicapping her in daily life (except for frustrating you who have to live with a hormonal teen), that she fares well, and will grow out of it or learn to squeeze it into normal proportions as she grows up (many kids have control issues, for example, but as they navigate life they learn to prioritize and think strategically, so some of those control issues go away).