a few questions and ramblings.. long..

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Good morning! Better today than yesterday but then yesterday I just wanted a bridge to jump off.. lol luckily too busy at work to hunt for one.

I filled out the checklist from parenting your aspergers child and I would say 90% of the boxes are checked off yes. I gave one to her caregiver who homeschools her and also almost everything checked off. But she all included about a dozen little sticky notes with examples, wrote notes all in the margin and totally bummed me out. I truly did not realize Jordan was struggling there as much as she has been. I knew there were problems but not to this extent. Jen has been trying to manage her and really came to me with everything once she had exhausted all known to man forms of behavior modifications ideas she could think of and things were getting worse instead of better. Thankfully the changes we have made since we talked 2 wks ago are making a huge difference and things are much much better.

But everyone has a different opinion here..

Her caregiver thinks she will be incapacitated for life if we do not intervene. Keeps telling me about a man with aspergers who is incapable of calling a cab or doing his own shopping, lives with him mom and cannot function.. :

Her Dad is not in favor of anything to do with this and I'm struggling with that one. Hes fairly ticked that I'm pursuing counseling, OT services, and a full screening and thinks I am blowing this out of proportion.

My mom thinks a diagnosis will hurt her future.

People who have known her for years think I'm crazy bc she is such a well behaved child.

So that is the part of my current situation.. <sigh>

Questions for you all..

- Is it common for symptoms to be more severe or present at 'school' and such than they are at home? Jen commented that Jordan uses no voice inflection when reading aloud, no facial expressions other than anger which is very frequent there, and that her voice, body language, and face remain very flat except when she is being rude and angry to everyone. That was very upsetting to me. But at home she does has more expression, she does read to me with proper inflection, etc. Is this just because she is stressed there versus relaxed at home?

- Also, apparently Jordan keeps a large distance between herself and others and will not let anyone touch her. Even if she falls and gets hurt no one can help or comfort her or she lashes out at them. She tends to hang on me to excess at times. But I did not realize she was so 'hands off' there.

- Her Dad thinks we need to spend more time with her and do more different things together and change things at home, etc. While I understand his point I’m concerned that this is the wrong thing to do. I know she spends a lot of time alone at home but I think she likes it that way and that mixing up the whole routine will just make home more stressful too. Stress = poor behavior which = being in trouble with Dad. I think if she is happy and relaxed at home we should leave it alone even if it is not the norm. And it is not the norm. Most of her time is spend alone and I keep myself ‘available’ if she wants to do something with me. I make it a point to play games, do a madlib, or watch a movie if she asks but I don’t push it on her. I just do my thing while she does hers unless she asks. Any thoughts here?

- And finally I’m very torn between the ideas that we should try and help her ‘fit it’ and do more like everyone else and just letting her be. Her caregiver seems to think she needs help to be more ‘normal’. Dad seems to think she IS normal.. LOL I keep saying to people over and over that I only have 2 goals here.. 1 to reduce stress and teach her how to reduce stress for herself and to help her learn coping strategies other than being angry and explosive to everyone. I also think some basic social skills help is needed. But I don’t expect her to ever run to the playground with be wild with 15 kids or to hit the buffet and get one of everything or suddenly love new ideas and experiences. That is simply not who she is. How do you balance supporting who she is while working on areas that you know will cause her harm in her own life as she grows?

And being that conflict is sooooo difficult for me I'm really having a hard time with her Dad and a large part of that is bc she is so irritated whenever I bring it up that he doesn't even know all of this bc I haven't had t he nerve to get into it all. Suggestions??

Ok.. I’ll go now.. LOL I will say that I do feel better seeing that at least with everything going on that her homelife and her relationship with me and her Dad is good and she is a pretty happy albeit quirky camper at home.

I think you are on the right track, balance. With that saying you can try to spend more time with her, like one day a week just to try out dad's idea (you never know, sometimes one can find new favorite thing).

Otherwise I just wanted to say that her caregiver's comment about her future is making me furious. I had similar comments from my son's teachers and one from a doctor and it is extremely scary when people tell you that. We got courage and tried our own way despite these comments and it turned out that my son is making more progress than ever before.
It makes me F***** mad that stupid (stupid, unimaginative, close-minded) people give themselves the liberty to predict the future. I knew that but still we as parents of children that have some problems are extremely vulnerable to be talked into all kinds of things. I just want to say, observe your daughter to see what works for her and do not allow yourself to be scared into things that you know are not good for your child.

She's 10, home needs to be a safe place.
I don't think there is any value in pushing her out of her comfort zone. When you see your child is peaceful, enjoying herself, then be happy because she is ok. All issues are worse in school, all issues are worse under pressure.

The best way to help your child is for you, through observation, figure out her difficulties and then spend the time to help her manage them properly. You have to rethink and redefine 'normal'. If she reads normally with you then read as much as you can. The more practise the better the skill. It may take her 2x as long to get a skill but then she will have it forever, hone it and master it. If she has difficulties with math then figure it out and do it until she gets it. You and your hubby are the most important people here and the more time YOU are willing to put into your child the better she will find her way. The help in the world is minimal, only you can put in the time to make the real difference. Being pushed never made me ok, leaving me alone and spending extra time to help me figure things out was the only thing that helped me grow and join the world. 3 things she needs to learn---reading, writing and math. Don't trust professionals --schools -- tutors to teach your child. This doesn't go away, it has to be managed.

I die under pressure...I cannot work under any deadline or finish something to please someone else. Teach her that all her accomplishments are for her to enjoy not for you.
If I'm forced to do something I'll meltdown or do it but the anxiety will be unbearable
I will fail if it feels like a competition

A few random thoughts:

I'm not sure what logic this person was going by when she compared your daughter to a man who can't call a cab on his own.

People with social difficulty have more difficulty away from their families/familar environments. Probably everyone does to some extent.

90% of the kids in my mainstream public school when I was growing up read with no inflection whatsoever and they certainly can't have all been autistic. They sounded like robots but were by and large NTs who left me in the dust socially.

My favorite author (who I bring up way too often, but whatever), has a very monotone voice. I heard her reading her own book aloud. Her voice has soul to it, though, so I wouldn't call it robotic. And not to diagnose a celebrity, which I can't do obviously, but from things she's said in interviews etc she shows many commonalities with people on the spectrum.

School (non-homeschool) is stressful but I'm an advocate of it. I know you homeschool your daughter but you never know, it might do her good to be around other kids? I know you've made your choice as a parent and I respect that but I can't tell you how wonderful my public school experience was even as a scared little social misfit who "hated school." Being around lots of other people on a regular basis slowly broadens one's comfort zone til you start to feel at home everywhere and feel more and more part of a human community. Might help with her anger issues, which (if they exist) might stem from mistrust and fear?

Anyway she sounds like a lovely person who'll turn out fine in any case. Everyone has challenges (I'm almost 25 and still living at home) but I do have leaps of progress (just got a longer-term babysitting job).

EDITED TO ADD: I was in a TAG (talented and gifted) program throughout elementary school where they took you out of normal class to engage in activities in a relaxed and tolerant-of-quirks environment. It was like game time but also obv. education-focused. Maybe you could look into something like that for your daughter?

What I'm finding is that with less stress during the day her need for alone time is dropping too. So she is spending more time with us by her own choice. Now by 'alone' a lot of the time we are all in the same room doing different things and she keeps her ipod going alot. It had required 1.5 -2 hours of solitude for her to recover from her day but now it's more like 30 -45 min. Her fav is for us to watch movies together so I do my beading and I notice that she starts off on the other side of the couch but my the end of the movie shes all snuggled up to me.

The comment has really been irritating the crap out of me too. Enough that I found myself wondering is someone would such a negative outlook on her future should even be keeping her. I did say something about it yesterday so I dont think I'll hear the comparison again. Probably still feels that way but at least I dont have to hear. I do believe she means it to be 'encouraging' as it is being framed as a 'its so great that you are doing something to help her bc so and so did not get any help and he never learned to cope with real life situations' deal.

And there are a lot of positives to where she is. Jen is very willing to think outside the box when it comes to teaching Jordan for example she struggled in math horribly until Jen started writing out all the steps and explanations to new concepts in step by step sentence format. Jordan reads them, copies them and then does the math problems and that has worked. She is also willing to make changes to their routine and all to keep Jordan less stressed. So basically whatever suggestions or changes I want made there are typically done. She will let me know if for some reason she cannot change it and we work something out from there. And she is exceptionally patient.

-- Thanks alone.. that was sooo helpful.. I keep finding my self wondering if accommodating her all this time was a mistake. I'm really trying to change my thinking from 'accommodating' her to providing the environment she needs. She has always been very sensitive and we have always done what we can to make home work for her. I like a calm quiet lifestyle too.

And I agree.. many professionals just dont see your child for who they are. It's all about the statistics and the programs, blah blah blah.. LOL

On the school issue.. she is 10 and we have always homeschooled. That was a decision that was made long long ago and I am certain that it is the best choice for her. I'm glad you found it helpful in your life though.

dont sweat it...but continue to work at like a slow bulldozer
I have severe PDD and when I was 10...whew I was a case! I was eating grass in the front yard, barking at my friends like a dog all the time cause I did not know how to socialize. I wanted to be an animal cause being a human was just too hard for me. I was scared of buildings falling on me...I refused to use anything electrical because of a phobia of getting shocked. I had meltdowns like you would not believe. I was hospitalized because I kept attacking my sister. The doctors told my mom that I would never be happy and would not be able to live outside of an institution. I scored in the MR range on a typical IQ test, but scored 135 on a non-verbal IQ test. I had major difficulties in math and every day when it got to math time...I threw up because of stress. I was so hyper active that I would run around the house in circles for hours. I did not understand much of what adults said to me...it was all a blur of words. I would only play with other kids if they would play animals with me...but did not know how to commicate with people much outside of my special interests.

but after a dedicated mother and the grace of God, I am functioning quite well now. I am an artist and writer, and I won 2 art compititions, had a gallery opening at 20...went to art school and mostly made a's and b's. I had alot of strugles before and afterwards but now I am home helping taking care of my mother who is chronicly ill and writing a book, and working on publishing my poetry. When I am not doing that, I work on fiber art or hang out on wp as a peer councilor. I am quite happy despite it all and am not in an institution...and yes I can call a cab. I would be alittle shy about it...but I can do it. I can understand quite well what people are saying.
So there is hope. A wise woman once told my mom, "those who keep seeking are never truely lost."

As far as your hubby goes...he is being a man. Men often react to their child having a disability with blatent denial because they dont want to admit that their offspring could have a problem. It is just an ego thing.

She seems to be decompensating over with Jen. I suggest that you have Jen come to your house and you watch how they interact. You might find out what is going on with her. ALso change is a tough one for kids on the spectrum at that age. How bout paying for Jen's gas to homeschool her at your house. That might make things easier on her.

As far as her damning comment about her future... she is basing this off of one person she knows with autism...that is not enough evidence to prove anything....more likely its sterotyping.

there is hope...you just have to keep working at it.

As far as accepting her for who she is while giving her the hekp she needs?

that is easy. Identify what aspects of her AS will prove to be problematic as she grows up and work slowly on helping her overcome these things, but at the same time to respect who she is dont try to normailze her and enforce into her that AS makes her unique but AS is not a bad thing as many people have used it to better the world.

Jojo

Thanks Jojo! She has been at Jens for a little over a year now and I think 3 kids invading her home space messing with her stuff etc would probably go worse.. lol definitely some 'only' child syndrome there..

Bill is slowly coming around.. and I am just pushing forward. Thankfully we have been able to reduce Jordans stress considerably at Jennifers so things are improving and with the immediate situation going better I am just trying to work out ways for her to handle herself better when that cant be done.

We had her first OT appt yesterday and she will be doing that for awhile and we will see if helps too.