I really really really need help with my dd...(long, sorry!)

[cin]

She is adopted and had a horrible first year (BEFORE she came to us!) Before the child was 12 mos, she had 8 broken bones (no skull fractures) and was with 5 or 6 caregivers. She didn't talk well until she was past 3 yrs, and didn't crawl until 14 mos and walk until 18 mos.

Now, to today. We have been tested for auditory processing and language processing. She is very smart, and tested very high in some areas, but in a couple of areas on both tests, she tested low. But, when averaged together, her score was within normal means and so does not qualify for help. We have a GREAT children's hospital, but they are so inundated that they don't have time for borderline kids.

So, DH and I have been wrestling with the fact that maybe it's us? maybe we are expecting too much? Maybe it has something to do with her not being like us, etc. But we both agree that there is still something that is just not right, and we really think that she could be helped, IF we can find someone.

So, here is what we are dealing with. DD is 8 yrs old. I have always felt that something was just 'not right'. Basically, we have to tread lightly all the time. Most of the time, she cannot follow 2 directions, sometimes, she can't even do ONE. She has to be on top, right, the center, whatever it is. She does not hear the tone in her voice, or ours. If she says something in a whiney or complaining voice, she has trouble saying it in a nice voice. She has no idea how her words affect other people. She will flat out tell her younger sister that what she is pretending is silly. It cannot happen like she says.

In addition, she is extremely uncoordinated, has sensitivities to food textures (she almost gagged this morning taking a liquid medicine that was too thick) and has a real hard time dealing with changes, and thinking ahead. She has been seeing an OT for minor dyspraxia.

As far as school goes, she is well ahead of her age level. She loves history, which is mostly reading and doesn't really involve instruction. She has trouble being taught anything. >sigh<

Now, the hard part about all this is that......Most people cannot see these issues. It's a matter of dealing with her day in and day out. 2-4 hours, you think she just has a quirk. But you don't realize that she has a TON of quirks.

Sorry this is so long, but here's the question....WHAT SHOULD WE DO? Should we just leave it be, or should we seek further help? And does anybody have any ideas WHERE to seek this help, since the great and wonderful Children's Hospital in our town has essentially failed us?

[Reya]

So, here is what we are dealing with. DD is 8 yrs old. I have always felt that something was just 'not right'. Basically, we have to tread lightly all the time. Most of the time, she cannot follow 2 directions, sometimes, she can't even do ONE. She has to be on top, right, the center, whatever it is. She does not hear the tone in her voice, or ours. If she says something in a whiney or complaining voice, she has trouble saying it in a nice voice. She has no idea how her words affect other people. She will flat out tell her younger sister that what she is pretending is silly. It cannot happen like she says.

In addition, she is extremely uncoordinated, has sensitivities to food textures (she almost gagged this morning taking a liquid medicine that was too thick) and has a real hard time dealing with changes, and thinking ahead. She has been seeing an OT for minor dyspraxia.


Sounds like either CAPD or Asperger's or both. The last paragraph is classic Asperger's, and so is the tone of voice/not censoring thing.


FWIW:

I had strong sensitivities to food textures to the point that I would violently vomit anything too smooth if I had too much. This included cottage cheese, oatmeal, cafeteria potatoes with gravy, yogurt, bananas, and a lot more! It's better now, but I still can't handle thin oatmeal even though I like its taste. And eating something I didn't like was guaranteed to send it back onto my plate! (My mother's gag reflex is so strong that dental visits are torture for her!)

I couldn't wear tags on my clothes for years, and I wouldn't wear blue jeans until 5th grade because the fabric was too stiff. I had unremediated dysgraphia so that the average 4th grader has better handwriting than I do. (THAT should have been addressed!)

My brother is autistic, and he has all these peculiarities and so many more.

Anyhow, for two-step directions: Make sure she is looking at you, and have her repeat them back or immediately question her about them. My CAPD son needs this most days.

For tone of voice: Have her practice different tones--happy, mad, sad, friendly, whiny, polite, etc.--until she can do them well.

For learning to not have her way and learning other points of view: Constant reinforcement and parallels to herself. ("When you say that, it's like someone saying to you....")

Flexibility: It helps to exaggerate her dislike or fears into something so ridiculous that even she recognizes that she's blown things out of proportion.

[elise1mds]

Without knowing anything else about her, I agree with what Reya said. Tone of voice is completely foreign in my Aspie. He's either mad or sad or flat. Anything else is rare. Even when he's being sarcastic, he says it in a completely flat tone (very confusing and potentially upsetting for anyone not in the family... or his little sister). He has a hard time with directions, too. I have found that since he reads well, a list is a wonderful alternative for more than two items, like our bedtime routine, for example: "Brush teeth. Take a shower. Dry off without playing in the mirror. Put on pajamas. Fold towel. Pick up dirty clothes. Put dirty clothes in hamper. Take melatonin." Basic routine for most people but nearly impossible for him. For one- or two-step commands, repetition helps a lot, too.

I would pick one thing at a time to work on and just plug away at it till you see some improvement and then move on to the next quirk. Gotta pick your battles, I guess. (((HUGS)))

[specialmama]

:iagree: Sounds like aspergers.

[KarenAnne]

It does sound very like Asperger's -- the part where you talked about having to tread lightly all the time reminds me of how I felt I had to live when my Aspie was small: walking on eggshells all the time. Then I felt as though I was reading a checklist: loud, flat tone, dyspraxia, sensory issues, trouble with transitions... the only thing that was different for my child was that she talked very early.

It is VERY frustrating to know that something is "off," different, or even downright wrong, and not be able to qualify for help because your child is too high functioning, or can read at or above grade level. Who exactly tested your child? Do you know the set of tests that were given? Did your pediatrician ever recommend any kind of therapy (OT, auditory, speech, etc.) that was denied because your daughter did not have a formal diagnosis? If the person who evaluated your child was not a full psychologist (I'd go for a PhD), I would recommend saving up the money for a private neuropsych evaluation. These are extensive, spreading over multiple days; my child had a total of eleven hours. The evaluator is going to see a lot more of the quirks come out over time, plus have all the test results. The neuropsych who evaluated my child was one of only two people outside the family who I felt really "got" her at that age (eleven).

What this will give you that is valuable is not so much the diagnosis -- which it will also give you and can also be highly beneficial -- but a very detailed learning and behavioral profile, with quite precise indications of strengths and weaknesses. This in turn allows the neuropsych to give you a lot of recommendations aimed specifically at those strengths and weaknesses. You may not choose to or be able to follow them all, but they are a great long-term roadmap for the kinds of things you will be doing to help your child, and to help others help her.

Second, you will get an official diagnosis from a well-qualified person, and this will open treatment doors. Particularly with the new DSM IV and the way that autistic spectrum disorders are all now going to fall under the umbrella of autism specifically, if your child is an Aspie or PDD-NOS, she will qualify for services for autistic children. At least this is how I understand it.

Another option is to ask for more specific/more extensive testing through your school district. This may get you a proper diagnosis; or you may find, like I did, that the local district specialist is unhelpful, thinks she can triumphantly tell you what is going on after less than two hours in your child's company, and doesn't listen to what you are telling her. It can go both ways.

If your child carries a specific diagnosis (you didn't say whether she does right now) this may or may not change access at your local children's hospital. One of the most tragic things about having a borderline child, as you describe it, is that they can almost certainly become independent, functioning, and satisfied adults IF they get the interventions they need; but either they are seen as not needing extensive help, or the finger-pointing game is in full flow: no, it's not medical, it's educational, so we don't have to pay; no, it's not educational, it's social, so we don't have to pay. The gap you cite between different IQ subtests shows that something is definitely off or different; but it is very hard to get therapies based on that gap even though it is an indicator of neurological problems of one sort or another.

Most parents of kids on the mild end of the spectrum, or kids who are bright with big gaps in the subtests, end up either paying out of pocket for private services or not being able to afford them, and having the child go unserved. It is truly, truly an awful dilemma.

Fortunately for all of us with kids like this, there are a number of really good books about Asperger's, nonverbal learning disorders, the autistic spectrum, and "quirky kids" (there's even a book by that name). And again fortunately, a lot of the recommendations for similar conditions overlap quite a bit, and many of the books have specific, practical ideas for working with your child at home and at school. I like Tony Attwood's Complete Guide to Asperger Syndrome, the book Quirky Kids, and Helping a Child with Nonverbal Learning Disorder or Asperger's Syndrome by Kathryn Stewart.

Wishing the very best for your family.

[bluedarling]

I appreciate the thread. I wasn't sure how to verbalize it, but have been wondering if I, too, should pursue a diagnosis. I'm certain my oldest (12) is an Aspie, but up until a year ago I was not living where I could get that diagnosed. Now that I am, he's been doing better, so I've avoided it (hoping all was normalizing.) However, now that I'm less focused on the severe behavioral aspects (he's better able to verbalize frustrations now), I'm more aware of other things. I asked our naturopath if I should pursue a label (her son is autistic) and she said no, we didn't need the label, since he's in vision therapy, has had OT, and she's working on his neurotransmitter balance. But a label might help to explain his quirks to others...and it might help me understand the path a little more? Educating him is sure a challenge!! I wish I knew if the label would help or hinder.
--Deidre

[cin]

So, to those of you with an Aspie child, do other people pick up on their quirks, or, as in my case, other people think you're crazy? Most of my friends trust and know that i'm not completley nuts, but they also don't see most of the issues and do soemtiems wonder if I'm exaggerating a bit.

[cin]

Sorry, I hit the button before I was done. I also want to thank you all for your responses. Now, I just need to find a neuropsych in our area. becuase of our HUGE hospital, most everyone is associated with them, but their nueropsych unit deals with head trauma and epilepsy.

I live in Cincinnati, so if anyone knows of a good place, please let me know!

And excuse the typos....I'm on benadryl :sleep:

[KarenAnne]

My daughter has a very controlled public "face," is very inhibited, so people usually think she is just shy and quiet. When she attended a co-op for a number of years I gave the other parents/teachers a mini-lecture on Asperger's and how my daughter might respond to stress or changes, etc. They clearly didn't believe me because she could maintain her control during the hours she was there. Finally toward the end of the year she had a huge meltdown and they were absolutely reeling.

Other people will watch her informally when I'm with her (i.e. she's not on her own being so controlled) and will often comment when I say she has Asperger's that they thought so; others are stunned. It depends on the context, since in some activities and places she is not stressed, is very comfortable, and looks basically like a normal kid with some problems initiating conversation. She's also extremely polite. In public she tends to be quiet (anxiety), whereas at home she is LOUD. And I mean LOUD!

However, we are currently visiting and looking into private high schools, and here her behavior is much more clearly controlled by anxiety, so more of her differences show. Also I've found that during the middle school years (she's now fourteen) she sticks out physically a lot more: she couldn't care less about her hair, her clothes are always askew or her socks sticking into her pants, she walks awkwardly. At a time when young teens are rigidly conformist and appearance is just about everything, this makes her more obvious than anything else.

[Laurie4b]

I would recommend reading the book The Explosive Child. Even if your dd is not actually explosive, the techniques in the book are very solid and can be used not only to resolve problems but to train some of the missing skills your dd has.

[bluedarling]

Is so my 2nd child (not the one I consider an Aspie, though he definitely has traits). My oldest (Aspie) is almost OCD on his appearance (has anxiety about whether his clothes match) and has a real issue with the fact that his little bro will go out in public with his pockets turned out, his collar twisted, his hair a mess, etc, with absolutely no regard to his appearance. It starts many an argument, lol.

People outside our home think my 2nd child is the one with problems, and they always think I was confused when I tell them it was my 1st. My 2nd child acts odd (especially in public). My firstborn no one would know there was an issue unless they knew him well, and his behaviors are often mistaken for something else than what they are. His high reasoning ability seems to help him hide some things well (for a time). However, once they know him they will see the rigidness, difficulty transitioning, etc. And if he's really comfortable...the unexpected meltdown. They won't see it all, but they'll begin to get a taste of his difficulties. It does make it really hard to explain to others, and I suspect it will make diagnosis more difficult.
--Deidre

[Jan in SC]

I would push the OT for a sensory evaluation. She really sounds like my son. I thought he has aspergers. I went so far as to label him myself and let others (that needed to know) that he had aspergers. Everyone sees him as a sweet, outgoing kid with a couple of quirks. They thought I was imagining the issues!

After an extensive OT evaluation and an evaluation from a private educational psychologist, I learned I was wrong. He has a severe sensory disorder, with ADHD. Once we found the right combination of OT program, outside programs and (in his case) medication, it was night and day.

We still have our days, in fact, many days, but he has a different life and a different outlook on life!

Good luck!

[Carol in Cal.]

I would push the OT for a sensory evaluation. She really sounds like my son. I thought he has aspergers. I went so far as to label him myself and let others (that needed to know) that he had aspergers. Everyone sees him as a sweet, outgoing kid with a couple of quirks. They thought I was imagining the issues!

After an extensive OT evaluation and an evaluation from a private educational psychologist, I learned I was wrong. He has a severe sensory disorder, with ADHD. Once we found the right combination of OT program, outside programs and (in his case) medication, it was night and day.

We still have our days, in fact, many days, but he has a different life and a different outlook on life!

Good luck!


At least part of this smacks of a sensory integration disorder, which is often present with Asbergers but not necessarily so. It can often be treated somewhat separately--the food texture issue is classic SID. You can start with the book "The Out of Sync Child" for some in-home management and treatment suggestions. Occupational therapy is sometimes miraculous for this issue, and if successfully treated at a minimum you would have one less set of symptoms plaguing her.

[Ottakee]

I agree that Aspergers might be something to check out.

Has she ever seen a neurologist and/or had an MRI? Some of what you say could fit with a brain injury/shaken baby as well. My own 14 year old has an overall IQ of 38 but with ranges from 20 (severely mentally impaired) to over 120 (above average). She is like a mentally impaired, LD child but this could be due to shaken baby in her case.

Is alcohol use/abuse common where she is from? Some kids with fetal alcohol can have some of the same symptoms as well.

[Reya]

Well, my brother was PPD-NOS, so it was hard to miss.

DH is an Aspie, and most people would have no clue.

[Reya]

My DS has a morning checklist on the back of his door that includes "go potty" as one required task.

[butterfly113]

My ds10 was diagnosed with Asperger's last August. Like you, I just knew there was 'something' there. Couldn't put my finger on it. He is incredibly bright, so that 'camoflaged' some stuff, especially around others.... until he would go into 'little professor mode'! :-) Anyway, with his ADHD, he would do great with a low dose med, to help him focus. I fought this route a LONG time, but he was more frustrated than anything else 99% of the time. That makes it REAL hard to teach. Back to my point.

I found this website last summer. At the bottom ther are Characteristics checklists you can open one at a time, and they are PRINTABLE! Here is the link.

http://school.familyeducation.com/learning-disabilities/behavior/56323.html

If I were you, I would print each one out and go over them. Make notes, and go over it with your hubby. Give him his own set to do if he would be willing. I did this last summer. AS I went through the lists, the pieces to the puzzle started coming together. I took this list with all my notes, made copies and went to my son's pediatrician. He then refered us to a developmental pediatrician here in VA at our Children's Hospital. We saw the developmental pediatrician and he agreed on Aspergers, and did his own observations etc. YET, he also sent us for a complete psychological evaluation. They did numerous tests with ds. The WISC, Bender Gestault and many others. If you would like to know the names of the others or more specifics you can pm me. The devl pedi also wanted a language assessment done. So we had a pragmatic language assessment done with a Speech pathologist last fall. DS could not carry on a normal conversation to save is life. Not reading facial expressions and all of that are classic Aspergers. Since we have been going to Speech weekly, and are seeing big changes! :-)
As far as the sensory issues, also part of ASpergers, but many other things as well. I would agree that having a Sensory Profile done by the OT could be helpful. We just had an OT evaluation completed in March. Now we are also going to OT to work on Sensory integration Disorder and dyspraxia.
One thing about Aspergers, is that no two kids are exactly alike. What affects one ALOT, may be minor in another. They are all different, but precious gifts from God! :-) You have been chosen to raise this precious child, God will give you what you need. The road can be tough, but don't give up, you are NOT alone. I send you a BIG BIG hug! Feel free to pm me with any questions.

Blessings!

[MariannNOVA]

Cin - I just wanted to send you :grouphug::grouphug::grouphug: and prayers and tell you how much I admire your determination.

We 'were' friends (close friends) with a wonderful family whose little boy (I suspect) has Asperger's. I've been his classroom teacher in pre-school and in First Grade and I've tutored him as well.

I've never suggested anything professionally other than speaking to the parents that there were 'reading' issues and I suspected dyslexia - but I knew that something else was 'off.' Same with their now 2nd grade dd.

Anyway, the dad is willing to leave no stone unturned, and mom latched onto the dyselxia suggestion, turned it into a diagnosis, and will go no further than that. He is an extremely bright, pleasant little boy, and I just learned that he was held back and is repeating third grade. I had suggested that he repeat First Grade when he was my student, but my suggestion was over-ridden by the parents. I'm heartsick as I know there is more going on, and he is being done a dis-service by mom labeling him 'dyslexic' and refusing to look at anything beyond that.

Sorry to ramble -- anyway, I applaud your efforts, bless you!

[cin]

My ds10 was diagnosed with Asperger's last August. Like you, I just knew there was 'something' there. Couldn't put my finger on it. He is incredibly bright, so that 'camoflaged' some stuff, especially around others.... until he would go into 'little professor mode'! :-) Anyway, with his ADHD, he would do great with a low dose med, to help him focus. I fought this route a LONG time, but he was more frustrated than anything else 99% of the time. That makes it REAL hard to teach. Back to my point.

I found this website last summer. At the bottom ther are Characteristics checklists you can open one at a time, and they are PRINTABLE! Here is the link.

http://school.familyeducation.com/learning-disabilities/behavior/56323.html

If I were you, I would print each one out and go over them. Make notes, and go over it with your hubby. Give him his own set to do if he would be willing. I did this last summer. AS I went through the lists, the pieces to the puzzle started coming together. I took this list with all my notes, made copies and went to my son's pediatrician. He then refered us to a developmental pediatrician here in VA at our Children's Hospital. We saw the developmental pediatrician and he agreed on Aspergers, and did his own observations etc. YET, he also sent us for a complete psychological evaluation. They did numerous tests with ds. The WISC, Bender Gestault and many others. If you would like to know the names of the others or more specifics you can pm me. The devl pedi also wanted a language assessment done. So we had a pragmatic language assessment done with a Speech pathologist last fall. DS could not carry on a normal conversation to save is life. Not reading facial expressions and all of that are classic Aspergers. Since we have been going to Speech weekly, and are seeing big changes! :-)
As far as the sensory issues, also part of ASpergers, but many other things as well. I would agree that having a Sensory Profile done by the OT could be helpful. We just had an OT evaluation completed in March. Now we are also going to OT to work on Sensory integration Disorder and dyspraxia.
One thing about Aspergers, is that no two kids are exactly alike. What affects one ALOT, may be minor in another. They are all different, but precious gifts from God! :-) You have been chosen to raise this precious child, God will give you what you need. The road can be tough, but don't give up, you are NOT alone. I send you a BIG BIG hug! Feel free to pm me with any questions.

Blessings!
Thank you so much for those lists. I'm goign to go ovver them, hopefully with DH, and then take them to our OT on Tuesday. So far, she has been fabulous with us. She is a strong proponent of the Mom's gut theory :). We've had alot of testing done, but it's not all been compiled or seen by one person, so I'm hoping to find a neuropsych who can look at our test results and maybe do a few of his own and then get some answers.

Honestly, I'm a little nervous about going to our Children's Hospital again because of the past 2 testings we've had. Since she was borderline, they just didn't want to bring her on board. I understand that there are kids out there that are more impaired than her, but at least refer me some place where I CAN get some help!!!

I'm really gleaning alot from all the responses, and I really appreciate all you sharing with me. It has encouraged me to keep going!

[paulaj]

Just a thought because my son has had some similar issues.
Taking him off gluten has been exteemy helpful. If you would like more info. please email me back. :) Also immediate consequences and voicing my expectaions with a reward chart has been good too!

Paula J

[gingersmom]

I would look for a developmental pediatrician. They would be able to put you in touch with other people.

Maybe your OT can put you in touch with others?

Having had a child with sensory issues and 8 years of OT, your daughter sounds like she has sensory issues.

Having them addressed will make a world of difference in your life and especially in hers. I speak from experience.

[Marlain]

Cin,
I have recently found a lot of help for my daughter from diannecraft.com
You might start by searching her whole website. Her DVDs are very inexpensive and helpful. The methods Dianne Craft uses are effective for children with severe "disabilities and delays" but some of the same methods are also used for people who have been victims of tramatic experiences. She also recommends nutritional suppliments.
There might be something there, you will feel can be helpful to your situation.
God bless you for your nurturing of these children!
Marlain