When does 'quirky' become something more? (also posted in ages and stages)

[faithsstuff]

Ds is almost 4 and for at least 2 years we've been wavering between:

he's so funny and quirky

and:

that def isn't normal.  

I don't know when to start evals, when do you just have a child who is 'differant'.  I''m not saying this well :) Maybe this isn't even the right board, but dh and I aren't sure where to go.  I tend to think that alot of childhood diagnosis' are overused and that sometimes you just have a kid who's unique.  I do have two half sibs with aspurgers so I also know that not all diagnosis' are wrong or harmful.  

So when do you do more, when do you stop saying, he's just so unique, differant, etc and say 'this could be a prob in the future'.

What do y'all think as parents?

[pek64]

I think most folks are going to want more info to try to determine if *this* child is more than quirky.

My answer is -- it depends on if he is going to school, at this point. I decided to homeschool, and take a wait and see approach with my son. If he had gone to school he might have been diagnosed with ADHD. As it is, we avoided both the diagnosis and meds. He came up with his own coping tricks, and, as a teen, does quite well.

If you are willing to work with your child, and homeschool, you can delay diagnosis and possibly avoid it. If the condition is severe enough that he needs other help, you can get it when the picture is clearer. If it were me, I'd wait.

[christinelin]

I agree that it would be helpful to have more details.

In my case that point when I was having conversations in my head about what was normal and what was not was the sign that I should add into the mix someone with the professional credentials to actually make that call. Never regretted having an evaluation done. I, too, was uncertain about the label, but once we went through the whole process, I embraced the label (in our case, Asperger Syndrome) because it explained a lot and helped us get professional help that has transformed my kiddo. He still has ASD, but he is comfortable in his skin in a way he wasn't before.
 

I will add that I also have a second "quirky" kid who is not on the spectrum. We have had her looked at more informally and feel certain about that label (or lack thereof!), too. Not every quirky kid has something diagnosable going on and a good clinician will not give out a diagnosis without a real reason.

[Linda on the move]

I personally think there is a thin grey line between "normal and quirky" and "special needs."  It really comes down to how a child copes with the demands of society on a person their age, and even for the same kid, that can waver at different points in their development.

One of my favorite books, which I recommend often and is PERFECT for where you are right now ,is "Quirky Kids: when to worry and when NOT to worry" by Klass.

http://www.amazon.com/Quirky-Kids-Understanding-Helping-Doesnt/dp/0345451430/ref=sr_1_1?ie=UTF8&qid=1348247908&sr=8-1&keywords=quirky+kids

Originally Posted by pek64 

If you are willing to work with your child, and homeschool, you can delay diagnosis and possibly avoid it. If the condition is severe enough that he needs other help, you can get it when the picture is clearer. If it were me, I'd wait.

I don't agree with this advice. Homeschooling can mask special needs. Because the parent is not seeing how their child performs compared to their peers, they can miss seeing how far off their child is. If they follow the frequent homeschooling advice on mothering.com and other places, they can ignore red flags when their child isn't picking up things that most kids there age can. They limit the child's access to teachers with training in teaching special needs kids.

I know that sometimes homeschooling is the best possible answer for a special needs child, but I don't believe it should be undertaken to avoid a diagnosis. It's a form of denial. Its starting down a path of pretending that the differences don't need to be addressed, and is the first step to providing a child who needs more help with less help. If you have other good reasons to homeschool, cool. I'm not questioning that. I'm just saying avoiding a diagnosis is not a good reason to homeschool. 

I'm of the opposite opinion, if you feel homeschooling is the right option for your child for now, you should have a very solid DX in place so that, if god forbid, something suddenly changed and you HAD to put your child in school, you would have a paper trail to prove your child needed an IEP/504 plan. Homeschooling a special needs child without creating a solid paper trail proving that they would need accommodations in school is like not buying life insurance. You aren't planning for your child if something goes seriously wrong in your life.

[faithsstuff]

Let me think of some examples...

He has some *quirky* social skills.  He had 2 friends over the other day, they have known us since his infancy and are 2 and 4.  In the midst of them all playing (happily) in the sand box, he stands up and says 'o.k. boys and girls it's time to go inside and play legos' (in a strange falsetto).  It was cute yes, but very scripted (he must have heard it on t.v. as he's not in school) and a strange way to communicate with peers.

He wants to play in a group and with other children, but when there does not actually *play* with them, unless it's chase.

We have just started with a homeschool co-op and ds and I 'teach' a 50 minute class.  The theme is nature.  I have learned that not only does he learn something the first time he hears it, he can be dancing in the corner and still know what was taught.  We were doing a craft, gluing together parts of a flower.  Most of the kids had unrecognizable flowers but at this age, it's not about perfection :) Ds calmly explains that he will not be making a flower but will make headphones.  He turns his paper to us and has taped down a pipe cleaner in a curve and glued a leaf on each end.  It was clearly headphones.  Where did that even come from?

Yesterday we went to a community puppet show.  there was a long banjo intro (live music) out of probably 50 kids plus their parents, whose child was standing up leaping and twirling?  Yeah, mine.  

He is super rigid about some things.  I can't play legos with him because everything must be realistic.  He built an airlplane but needed help with stairs.  I threw some stairs together, but the were not the right scale (too large) for duplo ppl.  That ruined his plane, b/c now nobody could ever use it.  THere was a melt down.  

He wants ppl to play pretend with him but you *must* do it his way.  However he has elaborate rules that noone else can figure out.  Like which animals can speak, and that his name (whether he's a pirate, a baker or an astronaut) is always always Ziya.  

He is super...nonconfrontational.  We have a friend who parents her kids by letting them work things out for themselves.  We can't play together anymore.  Last time her ds was hitting my ds with a stick, she was like 'it's o.k. Z will hit him back and then ds will learn his lesson'.  What ppl don't realize is that my ds will not pick up a stick and hit back.  He will be deeply and emotionally effected for days that his friend hit him over and over with a stick.  

Here's the thing:  I love that he does this.  I don't want to change him.  At the same time, I have a 22 year old bro who was a precocious and fun little kid too,  and never had help learning how to normalize his behavior (when necessary) and he's awkward and (to most ppl) *odd*.  That's so harsh to say, he's also kind and passionate but...he needs/needed help and didn't ever get it.  I truly doubt he even has the life skills to live on his own.  I don't want this for ds. 

We also have huge melt downs and occasionaly shocking and intense fits and they are all around his rigidity.  But not b/c we push back, b/c he can't make us understand.  I don't know if that makes sense.  This year we've probably had less then 10 real 'fits' ( I don't know what else to call them, they are differant then him being dissapointed and whining) but they are always out of control and scares the hell out of him.  

We did nearly 6 months of speech therapy and OT earlier this year, and that def helped some behavior issues and helped him to physically keep up with peers.  I know there's more, but my fingers are tired :)  Over a year ago we started the eval process at the Marcus Autism Institute, but before our final big eval our insurance changed and we didn't have the cash available to complete the process.  So we've been going back and forth for some time.  Speech and OT helped with a lot of sensory issues so that was wonderful, we also used the Babies Can't Wait Program though we kinda fell through the cracks.  His case manager flat out told us ds wouldn't qualify for the pre-k/3 year old program b/c he was too intellectually advanced, and we did the whole eval, and he was right.  Ds was able to make it to some of the first grade concepts, but he has a mind that does not forget ANYTHING.  This does not mean that there aren't other things at play.  

*this is the never ending post :)  I just wanted to add some other things.

OT helped with the toe walking, but he still flaps.  Speech helped with extreme texture aversions, and taught him to chew.  Now he can sometimes have something, like grated cheese with his pasta.  However, he won't eat things that are green or brown (there are some other rules, regarding temperature, etc).  He can only use his one particular pillow.  If dh accidentally leans on it then he freaks b/c daddy has make it 'hot' and it must be 'cool' for sleeping.  He potty trained completely around 2 b/c he couldn't handle wearing clothes, cloth diapers were torture.  He still rarely dresses and will turn down going places (sometimes) if he has to dress.  

[livinglife]

He does sound delightful and very precocious.  But, you are seeing commonalities with your 22 year old brother who you worry will not be able to care for himself independently.  You already know the line between quirky and something else going on and your hunch is that your son is clearly more then quirky.  Trust yourself.

I saw that Linda suggests you read "Quirky Kids" (which was also co-written by my son's pediatrician Eileen Costello).  I find the advice to be basic and I don't agree with their take on nutritional support (they believe it isn't necessary to change a child's diet as there is no "evidence" as in scientific studies that it works) and vaccines.  I have had these conversations with my son's pediatrician and I believe her views are more open then what she writes in the book.  She has heard enough parents talk about the changes in their child due to diet and other interventions, and seen the changes, to not be dismissive of the changes. 

However, they both have "quirky kids" and it's refreshing to read a book by a doctor talk to you like a real person about real situations.  I think that they "normalize" quirkiness and help reassure parents that their child will find a place in the world. 

I think you are on the right track to seek a diagnosis and given how bright he is you will want to know how to meet his academic needs at the very least.  I also think that labels can be overused.  I am not afraid of them, but also tend to dig deeper then the label.  I want to look at diet, environmental triggers etc.  because I do think it is possible that many symptoms can be ameliorated with the right interventions and patience to stick with them.  My son is on the spectrum and almost two years into the GF/CF diet along with nutritional supports and other alternative treatments.  He is VASTLY improved.

[pek64]

What happens when you drastically reduce sugar and totally eliminate artificial flavors,colors and sweeteners?

[faithsstuff]

Originally Posted by pek64 

What happens when you drastically reduce sugar and totally eliminate artificial flavors,colors and sweeteners?

I don't know, we've never tried it.  I'd first have to see what that leave him to eat.  Ummm, what is supposed to happen?

[pek64]

Another thought about your son. He sounds like a natural born leader. Perhaps a director, foreman or CEO. I would help him with those skills. If you do not have good leadership skills, find someone who does to mentor. And I do mean leadership, not bullying and demanding. With better skills, meltdowns should disappear.

He also sounds delightfully non-confrontational.

Regarding getting a diagnosis, I believe that the child should have a say in it. Hence, waiting. I believe that when an individual is old enough to say what he feels and what he wants, then is the time to get a diagnosis, if the individual feels it is best.

Regarding homeschooling and special needs problems, I'd like to explore that on a separate thread.

Also, some states require annual evaluations, so some of the homeschooling fears have little foundation. If your state doesn't require an evaluation, there are other possibilities for comparing your child to other children.

[livinglife]

*

Edited by livinglife - 9/23/12 at 5:40am

[pek64]

Originally Posted by faithsstuff 

I don't know, we've never tried it.  I'd first have to see what that leave him to eat.  Ummm, what is supposed to happen?

Sorry. I missed this earlier. It might help prevent the meltdowns. It turned out my son reacts badly to those things (he gets migraines ) , but when he was young he had meltdowns when he ate those things. He had better ability to handle setbacks and disappointments without them. It might be worth a try.

[pek64]

Livinglife -- I'm glad we agree that I am reasonable. I have been very up front about homeschooling. There's no 'sounds like' involved. If homeschooling is not something a parent in this situation wants or is able to consider, I have no problem with that. In that case, naturally, taking the advice of those who have experience working with the schools is best. I'm sure the readers are intelligent enough to make their own decisions. Perhaps you are not as confident?

What say we refrain from any more personal comments and keep to the subject presented.

[livinglife]

*

Edited by livinglife - 9/23/12 at 5:39am

[pek64]

Maybe I'm much older, but I have learned that we can only present our ideas and let others make their choices, for better or for worse. And explaining only goes so far. Then one has to allow the other person to choose. We can never make choices *for* anyone else.

Now, let's try again. How about we talk to the original poster and not each other?

[livinglife]

*

Edited by livinglife - 9/23/12 at 5:38am

[pek64]

Yes, I've noticed how you rewrite -- even your posts have been rewritten.

This has become a very childish game of getting the last word.

How did I get the idea it was personal? You addressed your first comments to me.

Enough. Readers will have to figure out for themselves if you've been misunderstood, or explain too much. I am quitting the game.

[mamarhu]

To return, cautiously, to the original conversation...

I think it can be valuable to ask yourself what an evaluation would do for the child or the family. What specific problem would you hope to solve? Is an evaluation (or therapy if that is the way the path leads) the right way to address this particular issue? If you got a diagnosis of XYZ, would you act differently? It sounds like the kid is happy, functioning highly, and learning good coping skills. Especially keeping in mind he is only 4!

I homeschooled my "quirky" child on and off because the school environment, even with an IEP and all sorts of support and therapy, did not meet his needs at the time. He is now in mainstream high school with virtually no IEP accommodations, and thriving.

Please understand that I work in the world of children's mental health, and also have special needs kids of my own. I am not categorically opposed to testing, labels, therapies, or medications. I do however feel strongly that meeting a child's needs must be highly individualized. Look into "therapeutic" attitudes, methods, and programs that seem to match your family's strengths and needs, then see if you could implement some features of your favorites at home, informally. Have you read "The Out-of-Synch Child"? It, and the sequel, The Out-of-Sych Child Has Fun", are full of ideas and suggestions that can help, without formal intervention. "Floortime" is another strategy that can be used in the home.

I feel getting an evaluation would probably be harmless, but I wonder if there is any particular good it could be expected to accomplish.
 

[Linda on the move]

I feel this post lacks an understanding of sensory issues and autism.   I'm not attacking pek64, other than to point out that her child is neither on the spectrum nor has sensory issues.   I wouldn't advise following her advice, as it is based on no knowledge or experience. 

Originally Posted by pek64 

Another thought about your son. He sounds like a natural born leader. Perhaps a director, foreman or CEO. I would help him with those skills. If you do not have good leadership skills, find someone who does to mentor. And I do mean leadership, not bullying and demanding. With better skills, meltdowns should disappear.
He also sounds delightfully non-confrontational.
Regarding getting a diagnosis, I believe that the child should have a say in it. Hence, waiting. I believe that when an individual is old enough to say what he feels and what he wants, then is the time to get a diagnosis, if the individual feels it is best.

edited for typos

Edited by Linda on the move - 9/23/12 at 10:36pm

[crunchy_mommy]

faithsstuff - Your child reminds me a lot of my own 3.5 year old DS! There are differences but a lot of similarities too. DS is at the same time one of the most fascinating and frustrating kids I've encountered (though maybe that's just because he's *mine* lol)

Anyway... We had him in EI for awhile, he got OT etc. but it wasn't especially helpful. I laid off working on getting a diagnosis/treatment for the last year or so & thought maybe he'd just grow out of it, or just be a bit quirky... he can completely pass for 'normal' in many situations so I thought maybe I was just over-reacting. We plan to homeschool him and I didn't really want to or see a point to labeling him.

But now, I'm trying once more to get him a diagnosis & the proper therapy. There are a few things that have flipped the switch for me, made me think once again that there is something much more going on with him beyond just quirkiness & being unique. He gets into this completely out-of-control mode. He hurts me & DH and destroys our house -- furniture flipped over, tables broken, etc. I've started having a hard time with our friends because the other parents feel he is just too much (which shocks me seeing as he is 10000 times better when we are out with friends!) I feel like I am not meeting his needs. He is incredibly smart & creative. He can be a lot of fun, and conversations with him are both fascinating and confusing (because of his echoing, scripted speech, & restricted interests). Things that work with other kids -- rewards & punishment, for ex., -- have absolutely no effect on him, so as he gets older it is becoming increasingly harder to discipline him effectively. He cannot entertain himself at all, he needs 24/7 constant interaction. He has severe anxiety that gets in the way of meeting otherwise straight-forward needs (sleep, socialization, etc.) Basically, what I'm doing is not enough, it's not working. I've read countless books and stayed awake 'til 2am so many nights trying to research what could be going on with him & how to help him, but I feel like I'm just spinning my wheels. Our life is incredibly difficult and I feel like a failure as a parent. So... that is why I'm pursuing this... I need to make our current life more manageable. I need to feel like no matter how odd he might seem, that he is happy. I don't feel like he's truly happy right now, so we need help.

I hope sharing a bit of my own processing with this helps clarify how you might be feeling right now. If life feels OK & manageable, if DS is happy & enjoyable & you are able to meet his needs, and there doesn't seem to be any major developmental lag, you could just wait it out & see how things unfold. If, like me, you're really struggling with some of the above, or if you feel like he needs help in reaching developmental milestones, or some kind of specialized treatment, it may be worth pursuing therapy and/or a diagnosis. I guess I would urge you not to wait 'til it gets too bad, because right now I feel really overwhelmed, & I wish I did something sooner or just followed my gut from the very beginning.

ETA: DS does seem to do a lot better on a gluten-free diet... haven't been able to pinpoint any other sensitivities.