Our DD is almost 4 years old, and she just stands out. She's wild sometimes. When we visited the pediatrician for her 3 year check up, she dove under the chair and barked like a dog, then jumped up, humming, turned the door knob and ran down the hall. Since birth she has been high maintenance. Although her attention span is remarkable, we did wonder if she had ADD, but ultimately rejected that. She is also very physically active and has been a toe-walker since age 2.

At Thanksgiving, a family member who has a high functioning (GT I think, but we did not discuss that) son with Asperger's, age 8, and a high functioning son with autism, age 5, made some observations. She is also a preschool teacher with a special ed emphasis.

She commented that DD probably has sensory issues and suggested a few interventions to help - swimming, sitting on a spinner disc during class to help concentration and maybe wearing a compression vest. She also said DD would likely need to be in gifted education and that she functions in many ways like an 8 year old, which DH and I also see, but we don't discuss it with anyone except her preschool teacher.

There is Asperger's and autism in DH's family and ADD and audio processing problems in mine (I (ahem) have some autism spectrum tendencies myself...).

I'm just... amazed, I guess... that there may be an explanation other than personality for the intensity of raising this fascinating child. I'm exhausted and very motivated to learn how to help her.

Does anyone have advice on how to proceed?

DD is in preschool and doing well with an amazing teacher and a 6:1 ratio, but we are anticipating another year before kindergarten because DD is a December baby . Do I wait until she's 6 to get a formal evalutation with the school system, or discuss this with her pediatrician now? I can also try to cobble together the information to come up with our own plan to help her for two more years, but I'm wondering if we'd be missing an opportunity for early intervention.

DH and I do not think DD has Asperger's, autism, or ADHD, and maybe not ADD either, from what we know of these diagnoses. After hearing our family member's impressions, I'm reading up on sensory processing disorders and interventions, but thought I'd ask parents here, since GT seems to complicate identification.

What observations did your family member make?
I would write them down and bring them to the pedicatrician and ask for an OT evaluation. Sometime you can look for a OT who treats children and is knowledge in Sensory Issues and make an appointment directly. Depends on insurance and local custom.

I do think that rethinking your plan for kindy is a good idea, and that testing will help. Would the school do testing now, or does she have to be enrolled. You can always send her to kindy now and do another year if she doesn't seem ready.
Is it a half day kindy or a full day?

Best Wishes,
Grinity

Seablue, with that family history, your description of her behavior, and the toe-walking, I'd have her evaluated for autism spectrum disorders ASAP. Autism definitely runs in families. Girls do present unusually and are very, very often overlooked.

I would initiate the evaluation both with a private expert (developmental pediatrician or neuropsych) and with the school district. If she is on the spectrum, the district is required to offer her services from age 3; you could miss out on a lot of help by waiting.

IMHO this is way out of the league of an OT. Nearly all OTs will tell you this stuff is sensory in origin; if you only have a hammer, everything looks like a nail. I would instead seek an expert who has seen lots and lots of bright autistic children, including many girls.

Best wishes,
DeeDee

Thanks DD!

"Toe walker?"

Thank you for the thoughtful responses! One of my favorite quotes, DeeDee.

I'll make an appt. with our pediatrician first, because he will be quite helpful. I need to see him for something else about DD anyway (she is being worked up to rule out cancer - can you imagine? so far, it looks like she does not have cancer, but this has not been a fun process :().

Also, DH's cousin is a pediatric psychiatrist who I can tap on, as well as the other family member who I saw at Thanksgiving. I will get her specific observations to bring to our ped.

I feel nervous - like I don't want to know this. It's been convenient to blame DD's wildness and my challenges with parenting her on her intellect.

Grinity, I may not have been clear on the timing - DD is not able to start kindergarten here in California until Sept 2012. We would consider a private kindergarten next year to get her started, even if we transitioned her to the public school system for 1st grade.

Again, THANK YOU

Nautigal - toe walking is walking around on tip toes all day, developing calves of steel.

I have a similar four year old and we had her evaluated by an OT who determined she has sensory seeking issues and we go to OT once a week. My DD4 enjoys these sessions and insurance covers most of it, so there is no harm in getting an OT evaluation. We are actually going forward with a more comprehensive evaluation on Tuesday of this coming week.

She is very intense, highly talkative, must grab and touch everything, impulsive, very emotionally reactive, etc. but also highly social, extroverted, and imaginative so she doesn't clearly fit in any particular profile, so we are trying to figure out it if is overexcitabilities or something else.

I personally so no reason to hesitate. In fact, the earlier OT is started, the more of an impact it can have. I notice a previous poster thought this might be out of the realm of an OT, and that may be the case. My DD4 looks like the furthest thing from the spectrum on the surface, but we are still having her evaluated with an autism expert to help us determine what is sensory, what is giftedness, if there is any possibility of ADHD or anything on the spectrum. She can appear very "normal" and highly social, but there are enough quirks and challenges for us to want to get some input on how best to help her socially.

Good luck. Let us know what you decide to do.

DeeDee -- I also think this is great advice. The issues being looked at need an evaluation that goes beyond sensory issues. When I had a child diagnosed with SPD several years ago, I couldn't find enough evidence to support the diagnosis or the therapy, which we skipped. Kid turned out fine .

Seablue -- I'm sorry that you are facing this uncertainty. It's hard to worry and feel like something is going on but not have answers. I agree with the other posters, however, that knowing is preferable because interventions are possible. Lots of (((hugs))) for the cancer workup -- it must be really scary.

I think sometimes that there is a lot of anecdotal focus on behavior issues in GT forums that leads parents to think difficulty with certain issues comes from being smart. It's never seemed likely to me that behavior challenges and GT were obviously related. For me, having a 3 yo who read really well meant that the kid could self-entertain like a much older kid. There was much *less* demand for my attention and tantrums and being overwhelmed because a book was like a pacifier and guaranteed hours of silence . Beisdes, even if behavior challenges were related to GT, you still need to deal with the behavior and work on making that better over time. Making sure other issues aren't contributing seems reasonable.

I wouldn't wait to get the toewalking looked at. Yes, it can be a flag of spectrum disorders or sensory issues, but there are also real concerns physically about what that does to a developing kid's feet and legs. I would get that looked at. Sometimes toe walking is just an isolated habit but you don't know unless you get it looked at.

If you have insurance, I personally see no downside to getting started with an OT. I wouldn't decide "it is sensory and that's it", but pretty much everything you are describing has a sensory component and learning some of the techniques might help while you take time to sort out the bigger picture. It can be really tricky to sort out spectrum diagnoses with preschoolers so I would treat anything you hear as tentative information.

I sympathize. And yet: knowing (on all fronts) is so much better than not knowing. Once you know what you're dealing with, you can have a plan and get resources that will help you deal with it. Raising a kid with autism is easier when you have the right therapies and supports in place.

And if she doesn't have it, then by evaluating you've still probably done some important work toward figuring her out. That's a win, too.

DeeDee

As mentioned by previous posters- toe walking can be indicative of a lot of things. Usually its either shortened heel cords or a sensory thing. Walk around on your toes then on your flat feet. You do feel more on your toes! As to the description your visit to the pediatrician, that can be attributed to sensory issues or to just plain being overwhelmed or nervous.
Disclaimer that I am an OT so I am seeing a nail!

Ace, I wasn't trying to be offensive and hope I wasn't. Just speaking from my experience.

One example: I once had an OT tell me with great sincerity after a highly unscientific and biased evaluation that DS's autistic symptoms were entirely due to his difficulty in procssing sensory stimuli-- not to his autism.

DeeDee

This may or may not be relevent, please disregard if it does not apply. I know a young boy that is a toe-walker, after a few years of this he was diagnosed with duchanes (Spelling. It is a difficult diagnoses, and a form of MS). I am no expert, but it may be somthing to look at.

Duchenne muscular dystrophy.

Alexsmom, Thank you for the correction, my stepson's nephew has this and walks on his toes. They miss diagnosed him for a few years.

We have several toe-walkers in my family: my sister, myself, and at least one of my sister's sons to name a few. We may be somewhat dysfunctional in other ways, but I haven't noticed anything that might be related to toe-walking. For us, it probably is a sensory thing. We seem to have other sensory sensitivities as well. Everyone said my sister and I would outgrow it, and we still haven't at 40+. I tell people it's the ballerina in me trying to get out, or else wear high heels. :-)

NP, Edwin! Sorry if I came across abrupt - something came up right as I got the right spelling, and I only had time to paste and post.

Just a quick question...is she taking any medicine for allergies like dimetapp or anything...my DS had several undiagnosed food allergies; he was perpetually congested; and we gave him medicine so he could breathe (because our ped dr said that food allergies were so rare....blah blah blah...but no answers) Anyway, antihistamines can make a highly sensory kid zoom. You hadn't mentioned any; so I just felt like I should add my experience/two cents. The energy is still there; but not the "zooming.":)

I really appreciate everyone's input. It helps to have different perspectives.

I purposely spent a few days away from the board, reading, reading, reading, observing DD a little differently, and discussing everything with DH. The one thing we think, so far, is that DD's interpersonal skills lean her away from Asperger's. She's quite perceptive of other people's thoughts and feelings already. However, it's helpful to know, DeeDee, that there are special difficulties in diagnosing girls with Asperger's. We are certainly not able to diagnose her ourselves.

I'm also pausing (deep breath) so I can muster my energy before knocking on our ped's door to pitch my concern.

The OT route sounds good... I am a fan of OT. But at what point would it be indicated to seek additional testing from a developmental psychologist? I'd like to have that plan in place before agreeing to an intervention. In general, I'm not one to treat the symptoms before accurately diagnosing the problem.

As for toe walking, the cancer work-up was for leg pain that has been one-sided and lasted more than a year. Not growing pains, apparently, so could be an osteo sarcoma, lymphoma, or juvenile arthritis (she also has rashes). We await the blood work, but no malignancy was found on xray. What they did determine was that DD has a leg length discrepancy of 4 mm. Apparently adults with leg length discrepancies typically have one leg 4 mm longer than the other, but DD is only 42 inches tall. This could be the reason for her toe walking.

However, if someone could tell us why she uses her feet as a second pair of hands... and steps on absolutely everything, or sits and uses her feet to touch everything... we could have a diagnosis.

Again, many thanks for your insights.

Twinkletoes - did it go well on Tuesday?

Seablue, I'd go ahead and work on scheduling an evaluation (both private and school district) ASAP. The reason: it can take months to get to the top of the waiting lists for good private doctors, and the schools are allowed a period of 60 *school* days to get their evaluation done. Getting on the list now makes it more likely that you will have information when you need it.

Like you, I'd rather know what I'm dealing with first, before deciding how to treat symptoms. I'd put a neuropsych or developmental pediatrician before the OT for that reason.

I'm glad the xray is looking good... and I hope that there's a relatively easy solution (lifts in the shoe?) that will help your DD feel better.

DeeDee

Thanks, DeeDee, I scheduled an appt. with DD's pediatrician for his first available spot, Feb 1st. That gives me time to do my homework. How would I activate a school district evaluation, just call?

DD's issues show up on this list of sensory processing problems:

http://www.pdd.org/docs/cent/Sensory_Integraton_Dysfunction.pdf

Judging by this, I'd say our DD has a problem with proprioception, especially. I thnk I might print this list and use it as a basis for my conversation with DD's ped.

I see there is current discussion about autism spectrum disorders having some sensory subtypes.

P.S. I don't think DD has Asperger's, just from what little I've read, and how I know her Uncle and Aunt (with AS) to be.