toe walking (updated)

[OTE]

In terms of comfortable clothes try this- for my own clothes I'm an addict and wear these most of the time- and as advertised they do last a long time:

www.hannaandersson.com

I'll add a caution though. I wash and line dry all my clothes. Further, it's my experience that American washers are kinder to clothes than UK ones. But my Hanna clothes do last years and years with a LOT of wear.

About the toe walking. First I'm discussing this in general because of my Pervasive Developmental Disorder (PDD) experience. Not suggesting in any way that your daughter has Pervasive Developmental Disorder (PDD)! But I have seen quite a few Pervasive Developmental Disorder (PDD) kid with toe walking. And every one has been "cured" in my son's Miller Method school. The interesting phenomena is that they don't do it on the elevated structure. Presuming that you have something like an elevated platform on a playground near you, take her there in bare feet (ok not this month LOL). See if she toe walks when walking on the platform.

You could probably try this at home by finding something at home for her to walk on about 24 inches off the ground. Maybe wide boards placed on dining room chairs. You could also try a balance beam.

The therapy is to have her on this elevated structure on flat feet for a period of time consistently. Miller Method does therapy/ academic activity with her while she's elevated in this way.

 

[Macsmom]

OTE, What is the theory behind the Miller Method? How can I find out more about it? Very interesting!

 

[OTE]

Miller Method is the way of teaching spec needs kids and is primarily now applied to Pervasive Developmental Disorder (PDD) kids. My son goes to a Miller Method school. There's an archive post in the general archives called miller method. The website is millermethod.org.

I'm having trouble at the moment trying to put it into 100 words or less because there's so much to it. Dr. Miller started working with spec needs kids in the 70's so he's been doing it a long time and has a lot of different therapies for different kids. The most striking thing he does is the "elevated square" which is what I was referring to for toe walking. In my son's school there's about an hour a week on the square so this is hardly a large part of my son's program. It's really more of a philosophy of treating Pervasive Developmental Disorder (PDD) kids. eg Dr. Miller defines Pervasive Developmental Disorder (PDD) as a developmental disability in that the child's development is not following the normal sequence of development. So he tries to fill in the developmental steps that were missed by the child.

My son learned to read with the Miller reading method which was phenomenal for my son. I was concerned that while my son was almost hyperlexic in learning letters we couldn't get through that letters together made something that had meaning. But in a few hours the miller reading method solved that whole thing! Not that I'm saying it's a miracle cure because I know other kids in his school who still aren't reading and they've done the program. But it worked perfectly for my son who's now reading very well.

I happen to be a big believer in this because it took my son who had virtually no language and taught him not only receptive and expressive langauge but written as well as social skills, very good eye contact, etc. Not that my son is "normal" or ready for mainstream school but he's come lightyears from where he was.

Guess I'm better at answering specific questions...

 

[capri]

Wow, is all i can say.
OTE i call it rambling when a person goes on and on, without giving much info of any vallue. So your posts were not long, just packed full of info, with no hint of rambling at all.

Macsmom, i havent heard of "Brushing" before, can you give me some more info. She hates to have her hair brushed though and is incredibly sensative to pain. Though i am geussing this isnt like getting your hair brushed.

At Tumble tots they have a few peices of equipment that involve beems and ballancing. Her favourite peice of equipment is a long bench that is sloped up to a sort of padded table, which they jump off onto a thick padded mat. Now hows that for technical terms :laugh: .

She does put her feet flat when she is on the bench, i recall joking about how her best walking is on the long bench (about 18") off the ground. They do the whole thing in bare feet so it is easy to watch their posture.

She is terrible at climbing ladders or bars though. They have a sort of A frame with a ladder on one side and a slide down the other. She absolutly refuses to try the ladder now. She used to try it, but she misses the rungs and cant coordinate her hands and feet to actually move up the ladder.

As her Sibs are away i didnt bother with her stroller in town today and i learned a few things there. She hates and cries her heart out on escelators (not sure if i spelled that right, moving stairs). I had to pick her up and carry her the rest of the way.
As soon as she stepped onto it the forwards and upwards movement made her tip back and she just couldnt regain her ballance, even holding me and the rail. She also hated the Lifts and was unsteady on her feet when we got out of it.

She does love to spin, just like her brother, she will also sit and shake her head from side to side so her hair spins out and she grins. But she only likes it when she is doing the spinning about (playing helecopters) or if i do it by holding her arms and spinning her round. She dislikes round-a-bouts, but likes slides and swings.

She does have a very sweet nature though and dissarms, with ease, even the most child hating people i know. My father is putty in her hands.

She will also actually reach out and gently move a persons head to get better eye contact while talking to them, I had her hearing checked because of this and it is fine. She just likes to connect with people.

I am going to look into the Miller method as it sounds like it could come in very handy with all three of mine.

I have an appointment with my GP tomorrow for her and i have made notes on all the things i have noticed as well.

 

[OTE]

Yes, she's definitely in Sensory Integration Disorder (SID) territory. Again, something I've learned about from my Pervasive Developmental Disorder (PDD) kid. Not that it's specific to Pervasive Developmental Disorder (PDD) at all, but common to Pervasive Developmental Disorder (PDD) anyway.

Most Pervasive Developmental Disorder (PDD) therapies use the spinning and other sensory stimulant as a way to get them "stimulated" LOL- so they are paying more attention to the lessons. In time they don't crave the sensory stimulant as much. Brushing is a form of stimulant for many kids. For yours it won't help initially since she's adverse to it. As compared to the kids who love it and crave it. ( I was in my son's class a week or so ago and they were "squeezing" one boy as a reward for good behavior! Their definition of "squeezing" was the sort of deep pressure on head, arms and shoulders that Sensory Integration Disorder (SID) therapists do). The point of doing it to your daughter is to reduce the aversion. The curious part to me is how this has so much impact- there's obviously some neurological explanation that's way beyond me!

Glad you see what I mean about the walking on elevated surfaces. Again, I wish I could explain it but over time this does help the toe walking.

About the brushing...couple of things to try:

mine discovered the shower and spends WAY too much time in there. It's on low pressure massage with pretty warm water and he LOVES it! You might just see how she reacts to a regular shower.

you might also try a rough washcloth or loofah lightly on her in the bath. Obviously over time increasing the pressure. The real brushing therapy involves a soft brush on the arms and legs. There's a specific methodology which you'll need to read up on.

Obviously she'll also need PT for the coordination and balancing problems. They're generally very successful in this area. It's just a matter of therapy over time. (You have had her ears checked- right? Not just the hearing but the physical structure?) The point is that the crave for spinning and lack of balance are both inner ear issues.

The escalator thing puzzles me.. is it possible she is afraid of it? does she have other fears? other than falling off the ladder? Fears are a developmental thing and can be off in our kids. My Pervasive Developmental Disorder (PDD) kid used to walk out in the middle of the road to touch passing cars- he liked cars!

Some Pervasive Developmental Disorder (PDD) parents put a swing in the house- in a ceiling joist. The swing is then used as a reward for doing the therapy. eg finish the set of lessons and get 5 swings on the swing. then more lessons for more swings. After lessons the swing comes off the ceiling hook and goes back in a locked closet.

 

[Macsmom]

That link is very good. Great explanation of SI. The only thing I would change is that tactile IS touch, and praxis is a skill, not a sense. Vestibular (sensation of movement) would need to be added to the list of senses.

 

[Sheila]

The escalator thing puzzles me..

Could be related to knowing where her body is in space or the vestibular (maybe others also).

Vestibular sense is defined as the sensory system that responds to changes in head position and to body movement through space, and that coordinates movements of eyes, head, and body. Receptors are in in the inner ear. (Vestibular stiumlation often includes a love for rocking or swinging.)

Visual-spatial processing skills are perceptions based on sensory informtion rceived through the eyes and body as one interacts with the environment and moves one's body through space. Spatial awareness is a subcategory of visual-spatial processing skills. Spatial awareness is the perception of one's proximity to, or distance from, an object, as well as the perception of the relationship of one's body parts.

These definitions are from "The Out-of-Sync Child" by Kranowitz.

Could be that coordination problems and/or Sensory Integration Disorder (SID) may be involved perhaps. Again, a pediatric Occupational Therapist (OT) should be able to help you figure it out.

 

I've fallen on my face getting off of more escalators, and don't even think about the darned 'slidewalks' they put in at some airports.

There is something about stepping from moving to still that just shorts out the nervous system.

 

[capri]

difficult child-Now-Gifted,

I didnt think of it in that way but could that be why she insists things have completly stopped moving before she stands or gets off.
We had to take the bus to school a few months ago (difficult child car, didnt schedule her major breakdown for holiday, or weekend) and she hated the bus.
She was exited about the whole adventure, as the older too were, and was happy to get on the bus.

The driver pulled out before we had got to the first empty seats and as soon as it moved she fell back into me and started screaming her head off. I rushed to the nearest empty seat and quickly sat with her cuddled up but she still wimpered the whole way there. The older two wanted to start walking to the front of the bus before we stopped but she just started wailing again and hung onto me for dear life so we stayed sat.

On the way home i asked the driver to let us sit before he moved off. He looked at me funny and just pulled out anyway (geuss i asked too much). Well she screamed again and hung onto me. This time she cried fairly loudly all the way home and when we got off the driver said sorry, sort of.

She likes the car, but always insisted she is fastened in securely, even pulling the seat belt taught. She also likes her ride on truck as long as nobody pushes her, cos that makes her fall off it.

When at my MILs house she tried to move the dinning chair easy child was in at the time. Well easy child fell off sideways, she made no attempt at all to keep herself upright.

Anyway back to my reason for posting.
I spoke to our health visitor yesterday. She told me she was probably just going through a clingy stage. She paid a little more attention to the fact that easy child is slowly dropping off the bottom of the growth chart again. I dont know if the US use the same measurements but we use Centiles. Both parents and siblings are on the 75th centile. So the fact that little easy child is slowly dropping bellow the 2nd centile worries me quite a lot.

She lectured me about what food to give her and showed complete disbeleif at the food avoidance behavour i described.

She has been giving her food away to either the dogs or her sibs and even hiding it in the bin. She actually lifts rubbish out and puts the food in then covers it up again. She also asked to go to the loo during meals and will take a fistfull of food with her if she can get away with it. She was flushing the food down the loo. She doesnt have a preference for sweets either and is just as likely to ditch half a bag of crisps as a half a choccy bar as half a meal.

I am almost certain my health visitor believes i am looking for problems where none exist.

So i spoke to the GP and he bassically said "she is very young, give her time and let her eat a few more fattening foods. Kids dont starve themselves ever" He was also extremly sceptical about the significance of toe walking and insisted it was a phase or new skill she was showing off.

I am going to give it 6 months and document everything i notice and others notice too. Then if i am still concerned i will go back, well armed with facts, and insist we do somthing about it. I am not sure what else i can do at this time.

 

[Wildflower]

Ah Capri, I have to say that the National Health System (NHS) in the UK doesn't instill me with confidence. The modus operandi seems to be to patronize the parent. You are right to start documenting as much as you can. I'd also use video of easy child walking, etc., if you can.

I tried to do things the NHS way this past year and couldn't even get in to see a GP! Couldn't get past the nurse! :frown: I'm bailing out now and going privately again. I'd rather pay through the nose and know that I'm getting service, rather than pay taxes and get lip service.

Sorry to hijack your post with a vent! Just wanted to say that I think you are on the right track.

 

[capri]

Wildflower, dont appologise at all, you are right on the mark. The NHS sucks big time.

My sister has been getting tonsilitus around twice a month for nealry a year now. She was told two weeks ago when in hospital (tonsilitus so bad she needed fluids for dehydration as well as IV antibiotics) that she is going to be put on the wiating list to have them taken out. The waiting list is around 12 months now, so only around 24 bouts of tonsilitus to go.

 

[Wildflower]

O-M-G!!! That is amazing about your sister! Gee-whiz ... :mad:

 

[Macsmom]

Capri,

Bring easy child with you when difficult child goes to Occupational Therapist (OT). Describe what is going on, especially with the balance, toe-walking, poor weight gain, dislike of clothing. If she's any good, she'll see the problem. Maybe you can get in from that direction. Many healthcare providers are still very ignorant of Sensory Integration Disorder (SID), may have never heard of it, and many that have heard of it, don't believe it. I don't know your healthcare system, but I would still try to find a way in to get services for her.

Good luck!

 

[SRL]

I will second macsmom's suggestion of bringing easy child along to therapy. Occupational Therapist (OT) is a family affair for us and has been since day 1. Before we even started I told the Occupational Therapist (OT) that it was my desire to be part of the therapy so we could work together as a team but that I had no option but to bring my other child along. I understand this isn't likely to happen unless initiated by the parent but in both mine and the Occupational Therapist (OT)'s opinions this has worked out very well. It's admitedly more hectic but this way she has been able to understand the child in the framework of the family and not just one on one.

 

[OTE]

About the food avoidance.. have you documented what she eats and won't eat? With Pervasive Developmental Disorder (PDD) kids there's typically a commonality. eg: salty crunchy foods are Ok but smooth ones are not. could also be color? Just document so you can look for the consistency.

Honestly, I wouldn't wait 6 months. I'd make a case in writing for whatever you think it MIGHT be. ie a list of the symptoms of that diagnosis and how she displays them with specific descriptive examples including frequency.

Also-- and I need Wildflower's help here- there's a diagnosis used in the UK that's not used in the US which overlaps with Pervasive Developmental Disorder (PDD). You might check that out too- maybe it will help with your case that your daughter needs a specialist.

 

[OTE]

Finally occurred to me.. DAMP. Here's a website:
http://www.chw.edu.au/parents/factsheets/dampj.htm

maybe you can make more headway with them with a different terminology.

http://apt.rcpsych.org/cgi/content/full/7/4/310

 

[capri]

Macsmom and SRL, Thats a good plan a with the Occupational Therapist (OT). The only problem with that is the waiting list for the Occupational Therapist (OT) is 12 months and difficult child isnt yet a month into it.
NHS strikes again.

OTE good idea, difficult child boy has a recent diagnoses of Dyspraxia and the neurologist actually mentioned DAMP in our assesment. He said difficult child boy fitted the criterier for DAMP better than Dyspraxia, but it isnt a vallid diagnoses in the UK yet so he was unable to give it as a diagnosis. He advised me to do research into it and find what i could to support him at home.

When i went to collect the difficult children from DHs parents i had a chat about how husband was when he was little. Turns out husband was very small and skinny as well, Birdlike in wieght actually. He is now 5' 10" and weighs 9stone straight. Weight training has given him a good physique and broader shoulders but he still has a 28" waist. So i geuss we know where her build comes from.
husband was also a timid little thing and didnt actualy start any form of education till her turned 5, no playgroups at all. Tried one day and didnt like it.

He was a loner too and much prefered to sit and watch. He hated parties and still does for that matter.

He day dreamed in school and was soon labeled as thick and not bothered with. By his teen years he spent most school days fishing, alone (with the dog). He has terrible writing (prints to make it legible mostly) and his spelling is creative to say the least. He refuses to ride fair ground rides and is only really comfortable in a car if he is driving (though he has grown to trust me as well). He hates lift and escelators (not that he ever told me that). Even swings and round-a-bouts were avoided when he was young.
He also ran on his toes, very quickly i am told. He still runs up stairs on his toes now. He hated their carpets as a child and prefered wooden floors. He also avoided clothes till he was about five and still hates anything tight around his neck.

So i think it breaks down like this.
I have pure ADHD and so does difficult child girl.
husband has either DAMP, Dyspraxia or Sensory Integration Disorder (SID) and so does little easy child.
Poor difficult child boy has got both, half from each of us.
Genetics are wonderfull arent they.
Still i geuss i know the whys and wherefors now so i can make a few more waves at the GPs.
husband left school with extremly low self esteem, a chip on his shoulder the size of a Forrest and vertually no qualifications, and still a very intelegent person. I dont plan to allow little easy child to go un-noticed/un-treated and finish up the same way. She is good and sweet and people wonder why i am making a fuss (i should just be pleased she is so sweet compaired to the other two) but she needs help as much as the other two and she will get it.
Just call me "Warrior Mum UK"

 

[OTE]

You go warrior mom UK!

remember to make it a professional presentation- all facts supported by examples and genetics and no emotion.