Lots of questions, 4 1/2 yr old AS/HFA daughter

Post Reply New Topic

Hi, I'm trying very hard to figure out some things on my own. The local school system isn't much help, because as everyone knows, they mainstream AS/HFA kids and seem to think that the behaviors these children exhibit should be redirected or punished. I've been very annoyed with the Head Start lately, because it seems as if they have no clue on what to do with my child.

Ambi has a lot of repetitive behaviors like walking in circles and repeating things. Mainly when she repeats something, it is something like..."Amber go play in snow" or when she wants something that I say no about..."Amber wants playdough", even when I don't have any! I hate to admit it, but before knowing what I know now, after the ten millionth [or so it seemed] repeated phrase, I yelled. I don't claim to be the perfect mom, before anyone thinks I'm horrid.

She is only partially toilet trained, not due to lack of work. Her school seems to think we're not working with her at home...and it's really becoming annoying the way I'm being talked to, as if I haven't ever given Ambi any attention at all!

But then again, they're the ones who are treating her as a NT child.

But, I have a few big questions, now that I've shared a bit of what is going on. First, what can I do to help in the situations where she is repeating or walking in circles? Should I just ignore the repeats or keep doing as I am now and answering each repeat the same way? Eventually in some questions, I answer a lot of times, then ignore it after the umpteenth time of answering.

Secondly, what is a way to discipline that isn't going to cause a meltdown? Amber has been hitting her two year old sister and time outs are just crazy. She won't stay seated. I don't want to take away her 'lovey' for a time because it was forever before she got one and it is her comfort.

Third, Amber has been grinding her teeth. I did it as a child, but not as bad as she seems to be doing. I don't think this is really an aspie thing, but anyone have some tips on how to help with that?

And lastly, the BIG question...the schools seem to have an issue identifying and teaching children with AS. They're either not diagnosed until too late or even when they are, the kids are just placed in 'special' classes in a regular school which leads to NT kids teasing the aspies [and other kids in the classes]. Ambi is due to start kindergarten in the fall. Should I fight for her to stay in the special school program she is in that caters only to special needs kids? Should I mainstream? Should I homeschool? Or shjould I do what I have been thinking of and organize some sort of movement to get aspies their own school program in the special needs centers?

I'm lost!

Oh, eek, one more thing. I saw somewhere that AS children talk early. My girly spoke very late and has issues speaking properly now. She's very smart, but just has problems saying the words she needs. Basically, finding the words and pronouncing them.

But she has all the AS behaviors that her diagnosed uncle has. Or could it be HFA? Any ideas?

I'd say that she sounds more autistic than Asperger's partly due to the late talking but as well as stuff such as toileting/self-help skills would likely be more delayed like they were in my Autistic (HFA) son than they were in me and I have Aspergers.

For the walking in circles.... when does she do it?
Is it when she's uncomfortable? Or is it when she has nothing better to do?
If it's when she is bored- maybe you can distract her with another activity.
If it's when she's uncomfortable- maybe you could give her something that comforts her?
But at the same time, let her do something like sports where she'll be able to still go in circles, but in an appropriate way.

I grind my teeth still- my dentist gave me a mouth guard to wear when I'm sleeping. It helps with the wear and tear of my teeth. Talk to your dentist to see what he/she'd recommend for her.

With regard to the other questions- I am still working on the echolalia in my son. I'm actually happy that he's reached to the point of repeating things now because before he was a lot less verbal. We do speech therapy now and we're working on getting him to say 2 words. It's still a lot of tears for him, but he can physically say the words, he just has to be in the mood.

When he starts school, I hope to put him in a mainstream classroom. He's very smart and he already is able to identify the letters of the alphabet even though he won't sing the alphabet song (but he hates singing on a whole). He can also write some of the letters- so I'm hopeful. We'll see how things go for him. I don't have any advice regarding the school system yet since I haven't experienced it first hand myself.

AmbisMom,

You're in NY State? I'm surprised to hear about the troubles you are having with the school system, as NY is reputed to be one of the best for dealing with ASD kids.

I'm a member of another parent's board, and there are many other parents from NY state on that board, including one super-knowledgeable soon-to-be parent's advocate, who knows all about NY state special education law and can surely advise you in your dealings with the school. Let me know if you want to know the location of the other forum and I'll direct you there, and you can join if you want and ask specific questions about the NY school system, and you'll get great, professional quality advise.

I don't have answers to your specific questions, but as a father of TWO autistic 4.5 year old girls, I can definitely empathize with some of the things you are going through! My daughters don't have those specific behaviors, though, so I have no advise, just commiseration . Actually, my older daughter (by 20 minutes), did go through a phase of repetetive questioning, but it was more like she was asking questions that she already knew the answer to. For example, if it was raining outside, instead of saying, "Dad, It's raining outside!", she would ask, "Dad, is it raining outside?". She would aks these sorts of obvious questions all the time about thing in the immediate environment, and yeah, it got sort of irritating!

One thing that I learned to do was to simply call her bluff. If she asked an obvious question, like the one above, I would respond with, "You don't need to ask me that.". She would then re-phrase the questions as a statement, "Dad, It's raining outside!". Now, she's beginning to make more declarative observations instead of these indirect observations.

The other thing I've done is intentionally through a wrench into the works by giving her an unexpected answer. For example, she might ask, "Dad, are you wearing a hat today?", and I might reply, "No, that's a shoe on my head", which, after a second, she'll realize I'm joking, and she'll laugh and correct me. I might continue this silliness for through a few turns. Anyway, the point is, I turned her odd, unneccessary questioning into an oppurtunity for a silly verbal exchange, which I hope will help encourage her conversation skills and sense of humor.

Anyway, this sort of odd questioning is fading with time, so it might just be a phase for our daughters. I'd just make a game out of it, try to lead her questions in an unexpected direction, through her for a loop - and see how she responds.

As far as the punishments - no easy answer, I'm afraide. We use time-outs - actually, we use the "naughty spot" (Nanny 911 style). It works for the most part, and they'll stay in it, but you have to use it consistently for it to work, which I often do not, and the girls know to push write up the edge of where they know I'm going to punish them, and then back off. I generally ignore tantrums or crying, but will often have them stay in their room, explaining that they cannot come out until they are done crying. This works pretty well - they seem to self regulate after a while, and come out of their room once they are calm.

We are planning on mainstreaming the girls. The educators are pushing us in that direction - least restrictive environment and all. They use TEACCH down here in NC, and it's a good system for altering the environment to better suit the needs of autistic kiddos. They don't just through them in with the wolves, so to speak.

I would encourage mainstreaming as long as proper supports are in place - a shadow, pull out sessions, whatever. I think our kids can benefit from peer models as long as the whole peer modelling thing is actually managed by someone who knows what they're doing - that's the theory, anyways.

Last edited by squaretail on 15 Feb 2007, 11:24 am, edited 2 times in total.

You should homeschool; you should allow all the stimming (walking in circles, repeating) but she HAS to learn to respect other people's sanity and sanctity-- so no hitting or other physical violence, and no "cruel" repetition (bugging you to the point that you are yelling).

With my son, I gave him a dropperful of chamomile tincture when he was violent... it tastes terible so in that sense it is a "punishment," but chamomile is a natural sedative. Before long just my mentioning the chamomile made him stop hitting.

Also find something she loves (computer?) and use that to try to encourage good behavior.

Take her out of school ASAP, is my opinion. Probably the stress of the not being understood or accepted is making her act worse.

I would mainstream her. It's not a Special World, out there.

What good would mainstreaming do now if she's not ready and it's unproductive to the point it stresses her out? It's not a "special world" but she's still a kid and doesn't need to be thrown out there just yet if she's not prepared. She has plenty of time to experience the "real" world....when she's older.

maybe visiting the program she might go to would appease your fears.....just because there's one idiot in the school system doesn't necessarily mean they're all idiots

I don't agree with allowing ALL the stimming. I think you should find appropriate ways to express them. I am surely glad that my Mother didn't allow me to pluck out my hair, shake my eyes or peel the skin off my elbows. There are some stims that you need to curb and you deal with them as they come up.

I appreciate all of ya'lls answers and advice. I'm horrid at doing replies when holding the 4 mo old, so I will get back to this tomorrow after the meeting with the home trainer and head start liasion chick, Can explain things a bit more clearly, too. Thank you guys!

My son who is 8 has exactly the same problem finding the words and pronouncing them, I am waiting for him to have tests done to see if he has Aspergers as i have been told it is a possiblity, he suffers from severe dyslexia as well, but i would'nt change him for the world.

Our 3 1/2 Yr. old AS daughter is pretty much doing the indentical things your daughter does, from the running in circles, to the third person reference to her herself, not being potty trained, to EVEN grinding her teeth. Time outs do not work with her either, and some of things we've read have more or less spelled out that such approaches, which work fine with other kids, are apparently practically useless when it comes to children with PPD's.

There is no causal connection to punishment, ie she does not really understand that the reason I would turn a TV off in the middle of one of her favorite shows would be that her room is messy. That's why we don't even approach things as punishments much anymore. It's simply puzzling for her. What makes more sense, using the messy room as an example is, "Lucy pick up your flower skirt and place it into the laundry bin", followed by "Lucy pick up that DVD cover and place it on your shelf", followed by "Lucy pick up x and place it in y" until the room is clean.

As far as the agression goes, and improving other things as well (not curing mind you) we have been trying the gluten free casein free diet for about a month now, at the suggestion of our doctor that we just try it for a month and see if we notice any differences. My wife and I being quite skeptical, we tried it anyway, and have been surprised at her increasing level of engagement, and what appears to be understanding. We haven't been very strict about it, our general rule about the diet has been "don't eat the stuff on purpose", rather than freaking out about cross contamination this or that. It has required some changes in the household diet, as we love Italian food, but it's easier to cook GFCF using a Thai cuisine. To Lucy, it's pasta either way. Talk to your doctor about at least trying it.

She's also been in speech therapy/yoga (!) which has been a pretty cool combination, increasing her spacial awareness, giving her some calming tools, while simultaneously working on her speech. My wife goes to it with her, the first half is just Lucy, and the second half is Lucy and a boy about her age with AS as well, which works well to help with the social integration part.

Know that there is nothing wrong with feeling the level of frustration that you have. We all go through it, the feeling of failing as a parent or blaming ourselves for our child's condition. Heck I go through that all the time, but I'm trying to get a new perspective again, like the one I wanted to have before all this AS stuff came to light. For me, it's felt a little like she's become a science experiment, which runs counter to how my heart feels about her. I'm getting away from that, and taking what I've garnered from the self-education about AS (via books and books and books), and putting it into use.

Example. Her obsessions are lazer beam focused, but usually dependent on what her favorite characters on her TV shows are. I've tried to do my best to further those interests into real world fun with her. Like Dora The Explorer and the Backyardagins liking soccer. I bought her a soccer ball, and she runs around the yard kicking the thing all over it. She likes the concept of space too so I got her a little light from Ikea that shines stars all around her room, and she loves it. For the most part, we're not trying to change her, just help her get in touch with the positive things she likes.

As far as books to recommend, of course there's Tony Attwood, but I found the book, "A Parent's Guide To Asperger Syndrome & High Functioning Autism" by Ozonoff, Dawson, & McPortland to be the most practical, easy to read, and inclusive (including girls, preschoolers, etc.) book out there for AS. This site is also a good resource, and depending on where you live you may be able to get face to face with some other parents where you are.

Lucy's diagnosis, and the time since then have taught me a good deal about myself as well, I'm probably teetering on AS as well, although I don't know if we want to go through all the stuff for me too. If you do try the diet as a family, I won't lie, it's kind of rough going at first, and it's really a better bet to change your preferences (Thai instead of Italian) as opposed to trying to substitute all this stuff, like have soy cheese on a rice crust pizza, um yuk. Godspeed to you....

What is a "lovey" - I don't understand.

I also agree with what nirrti_rachelle said - if in any doubt, it's better to put your child in a special class. Just because a child is super intelligent doesn't mean they will be able to cope in a regular mainstream classroom without support.

Parents are just like the experts, all contradicting each other.
Stimming is done for several reasons, to express excitement, stress and to learn. Walking in circles is rather harmless and I see no reason to curb it. It sounds as if your daughter is autistic (more than Asperger's) and may need a dx to clarify that.
At her age, I see nothing wrong with having her placed in an integrated class where she has "peer friends" (nt kids) and the support of special ed. It's great for modelling and anticipating "real world" schedules. I'm sorry but special ed classes (only for all day) don't do anything productive that you can't do at home. I've seen very high functioning kids doing nothing academically in there.
What's "partially toilet-trained"? Does she have accidents during the day? Is she in pull ups? or is this a night thing? Anyone who accuses you of being negligient because she isn't fully potty-trained is a moron! People are way too hung up on bathroom habits anyway. There are many reasons both developmental and sensory why toilet training is a very difficult task.

As far as fighting the school. Someone from NY may be able to help you more as has been suggested. They have a lot more venues for complaint and resourcing than most places. I know here just pulling my son out of the public school was enough to get him placed properly. But I'm in a lower income city that probably needs the $$ a special needs kid brings in.

Again, thanks for all of the replies. I am reading them all again and can't believe how nice it is to not be alone. And to not be as horrible as I thought I was!

Update on the school things-
We had the meeting with the school system this past Weds. During the Summer, Ambi will stay in her special school. At the end of the summer there will be another meeting to discuss Kindergartening. Dad and I have expressed that we want Ambi to get as much services as there are for her type of disability. [they still haven't said hfa or aspie, yet, they're not wanting to 'label'] This time they're listening. Wow! Her teacher is even going to attend a seminar on hfa/AS.

The speech stuff seems to be coming along on it's own. I try to talk clearly and make sure she understands, also, I just wait for her to say 'i' at times. When it's something non-essential, not something that will frustrate her. That's helping her more than school has. She's also imitating what her younger sister does/says, which I think is good for her. Ambi now hugs babydolls,takes 'care' of them and more.

We let her have a babyswing that the motor stopped working in, she loves it. Going to make an indoor playground in the basement as finances permit.[yeah we're broke, lol]


Oh, a 'lovey' is a special blankie/stuffed animal/or anything the kids carry around everywhere.