How do Aspie parents handle kids in school?

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My daughter is 5, and in Kindergarten this year. I've already had a meeting with the school on getting her evaluated, but their decision was that since she *is* learning, if slower than other kids her age in the social arena, she is not ASD and doesn't need formal evaluation. They said she just needs some social help with the school counselor, along with several other kids. Primarily because she was raised at home with family and not in a daycare environment.

I am self dx Asperger's, and so have no formal basis for pushing this issue with the school or the school board.

How do parents with ASD handle kids being in school and all the challenges that come with it? I feel like I am in complete chaos most of the time, and the last thing I want is for my daughter to be punished (basically) for my issues.

Are you in the US? If so, I don't think the school can refuse to evaluate if you have reason to believe she is showing signs of ASD. Try to document the characteristics she displays that make you think she may be Aspie or otherwise having developmental delay and take another run at the school. Put it in writing and address it to the people responsible for conducting an evaluation and their supervisor(s). Ask for them to respond to you in writing. From this one brief post, it sounds to me like the school is shirking their duty. If she is having difficulties, starting interventions sooner rather than later is likely to be a great benefit to her.

Do you have anyone who can help you out? A friend or family member that might be able to help you advocate for your child?

The way they worded it was "let's wait and see, she may catch up" - and while that seems reasonable, it just left me with a bad taste in my mouth.

I am on my own. My soon to be ex husband was there, and he denies anything being wrong with her other than some "ADHD tendencies but still nothing extreme to worry about" (his words). Naturally the counselor and IEP representative, principal, all jumped on his words as confirmation that I was just being too paranoid and that this was "normal for many 5 yr olds". I wish I had never brought up that she was kept at home and not put in daycare because they said this is typical for that kind of history. They explained all my concerns away as that being the root cause. That because she can talk, and because she can learn, she can't be an extreme enough case to need a formal evaluation.

But mainly I wanted to ask other aspie parents how they cope with the constant changes and demands that kids going to school brings, especially if they are single parents with no family around for support.

The only people I know here are the stbx's family - the dreaded in-laws, and I am in enemy territory here.

Part of the reason he left was because he doesn't believe I have ASD or that he exhibits MANY characteristics of it himself.

I'm not an aspie, and so don't have advice on how to handle school as an aspie parent.

As to the other part of your post, ff you ask for it in writing, they *have* to evaluate in the areas you request (speech, OT, behavioral concerns) -- but the quality of the evaluation by the school personel may be questionable. They certainly won't do the ADOS, and can't diagnose AS or autism (only classify with "autistic-like behaviors." ) Speech and OT evaluations by the school may pick up some issues, but if the teacher doesn't have concerns, she may be under the threshold of what they worry about.

If you have strong concerns, I would pay the money to get a developmental psychologist or pediatric neurologist to test her using the ADOS (this may run $1500-$2000, less if your insurance covers it). Then take the results to the school and ask for an IEP.

Otherwise wait and see how school goes for awhile -- is she making friends, learning, not in trouble on a daily basis, and not melting down after school? Some NT kids (especially those who didn't go to preschool) do have a tough adjustment at first, even crying daily, but settle into the routine and expectations of school within a few months.

It is hard. I am not a single parent, but my husband works long hours, and I deal with the school stuff on my own. We have no local family or friends.

All I can say is it gets easier over time. I am now more confident and relaxed when dealing with administration and teachers than I was 7 years ago when my sons began kindergarten. Some things I have found helpful have been:
-waiting 12-24 hrs before approaching the school when there has been a problem, so that I can make sure I am calm rather than emotional, and have had a chance to get my thoughts organized.
-setting aside prep time before meetings, and making notes about what issues I want to cover. I find that the obligatory small talk, and the circuitous ways that most people approach talking about things, completely addles my brain! And I have gone into meetings with a clear idea about what I need to cover, but then come away realizing I got lost in the conversation, and talked about little or none of what was necessary. Taking notes with me, really helps me to stay on track during the course of the meeting. I also take notes while I am there, or I won't remember what was decided. I like being really concrete about things -here are the issues, what is the plan to tackle them, what are the resources we need to do so, otherwise it's just a lot of gabbing with little accomplished. Obviously I have to try to "soften" my approach somewhat depending on the other personalities involved, but I find it is really important to stick with concrete issues and potential solutions, so I don't get lost in the chitty chat.
-email whenever possible. Textual communication is so much easier!
-have a school calendar that you write everything on and check daily (if you struggle with organization like I do)
-volunteer at the school, if you can, so the teachers, administrators etc. get to know and trust you, and see that you are an involved and caring parent, who is willing to give back to the school community. I have found some volunteer situations easier than others, although I struggle with anxiety before each one. The easiest for me are volunteering in the classroom, usually quietly doing some busy work on my own (great chance to observe your child, and the teacher in action!). The hardest are anything involving a lot of other parents, when it becomes a social occasion. I have had some absolutely miserable days, but I try my best to make a good impression on all, although I inevitably feel like an alien from completely different universe around the other moms.

As far as the constant changes, this is so tough. I was just telling the school yesterday, that I feel like I'm playing one of those carnival games where the gopher head keeps popping up and you have to bash it down, and no matter how fast you go there is always another one popping up. Just when our boys get comfortable they always "throw a curve ball" at us -new teacher, horrendously stressful field trip, new routine, new problem. I find some days after I am done dealing with the school stuff, I am absolutely drained, and by the time summer comes, my kids aren't the only ones longing for that 2 month break.

Thank you Alice. That helps a lot. I am a note making fool, or I will forget. My short term memory is in the toilet, but my long term is like an elephant. Weird.

the schools advice is actually pretty good. a diagnosis can be a burden in later years. if she is still in special ed classes in high school that is a great way to get into drugs, alcohol, violence, and gangs. special ed and diagnosis has bad a culture in public school so it is best to stay out of it unless help is essential.

If you request the school system to evaluate her, then they have to do the evaluation. If you are not satisfied with their results, you have the right to bring her to a doctor of your choice for evaluation, of which the school system has to pay. (assuming your in the US).

You should look for a autism type support group in your area. They are not just for socializing. There are allot of parents who know how the system works and will walk you through it. The lady who runs one of our local support groups is very knowledgeable on all the laws, willing to help, and will even attend any of the school meetings with me if I so choose. There are some good and valuable resources in those local support groups. I just had to get over the socializing piece, which actually wasn't too bad becuase I found them pretty accepting of me.

Nobody knows your daughter better than you. But I do see some intelligence behind their plan. My sons doctor, psych and the school psych all agree my son has AS. But they all agree he is about the highest functioning AS they have ever worked with. The only help we need at school today is with behavioral problems, he has no learning issues. he is in fact quite smart. I get his neccessary behavorial accomodations with his ADHD diagnosis, so we have yet to pursue the official AS diagnosis. If I ever need it, it is a phone call away. But I have no reason to not believe that he won't figure it out as time moves on. I figured it out and he is a pretty much a carbon copy of me. And to top it off he has the added advantage of a parent who understands and not a drunken abusive father. So right now, we are going forward without it and trying to avoid the stigma later in life. You best can answer this question, not your ex or the school.

Glad I was helpful.

Yup, my short term memory is absolutely terrible, and my long term isn't great either when it comes to people and events...no problem remembering minor details from whatever my main interest is though!

I've never really understood it. There are a lot of gaps in my memory from childhood, but if someone can remind me of certain key triggers, I can tell you time, day, weather, clothes worn, words used, and tone of voice even of conversations from 20 years ago or more... But ask me what I just went to the damn grocery store for? forget it... lol

wow.... Its been years.

I am going to suggest keeping copious notes and a journal. ASD kids often slip through the cracks because they ARE intelligent, and that can cover up a lot, especially with girls. But as she settles into school you may start to notice trouble communicating effectively (talking is one thing; speaking in a way that gets productive results is something else entirely- they call it pragmatic speech), trouble making friends, and trouble performing at school to the level of her apparent intelligence. Words to be suspicious of from teachers will be things like "if she tried harder," "she gives up," "she is so bright but doesn't have the patience for X," "she has trouble with boundaries," "for no reason she started acting out," etc. Those are just some of the ones off the top of my head that I heard with my son in his first year of school, and he was a kid that went to preschool.

Never let anyone make you feel bad about giving your daughter the best of you for as long as you did without the forced interaction of daycare of preschool. Yes, there can be some social skill differences in children used to other children in a formalized setting, and those who are not, but those differences are more likely to show up with things like not being able to share, getting upset easily by attempts to interact with other children, etc. And those differences should fade away fairly quickly.

Unless she is really struggling, you are probably OK giving her (and the school) the year to get a better sense of what is going on with her. But after that, if you start hearing some of those red flag phrases, I would insist on an evaluation. If you can afford it you can do one privately, as well (schools cannot give an official medical diagnosis, anyway). If intervention is going to be needed, you want it in place before she starts giving up and shutting down.

I agree that getting involved with the school will be helpful. It can be difficult when you have ASD, but as normal human beings, school officials trust people they know well and have worked with more than ones they do not. Plus it gives you eyes on the scene, to see for yourself what happens. When my kids were in elementary an ASD woman ran the Book Fair (she knew soooo much about children's books!). Other women have suggested doing photography is helpful; you can hide behind a camera. Whatever feels inspiring to you. Volunteering should be fun. Or at least a little fun

I'm an aspie single parent and my first piece of advice is to relax. Your child just started school, and technically isn't even in elementary school yet. In terms of how I've dealt with education is I've really focused on taking it one day at a time. When my son comes home with assignments, I'll make sure he does them. I used to check his homework when he was in 1st and 2nd grade, but he started doing the assignments perfectly well on his own so I didn't need to do that anymore. I used to have to nag him a bit to get his homework done, but now he'll worry about it himself and would be upset if he went to school without his homework completed.

When my son was in kindergarten, he'd come home every day and tell me how well behaved he was. I looked forward to school night because I wanted to hear the teacher tell me what a little angle my son is. When she came up to me she said, "Is there any trouble at home?" That's when I knew my son was pulling the wool over my eyes. So I'd check with the teacher frequently about his behavior and gradually it improved. My son didn't really become very well behaved until third grade.

I'm sure I'll have more challenges in the future, but I'll try to address them when they come up. You shouldn't sell yourself short. You should just take one day at a time, and do what you believe is best for your child in the long run. Plan ahead, but just take things step by step.

School administrators are not your friend. They will try very hard to withhold resources and accommodations because it costs them money. If you think your daughter needs to be evaluated and possibly needs accommodations, you have a right to pursue those things. Contact an advocate group in your area that deals with special needs children and IEP (Individual education plans).

If possible, go look at some schools to find one that comes close to your idea of a school.

The first school, or factory, in suburbia, was so off, then we found a small school with plenty of creativity to offer and a wonderfull location,
even when my 3yo wanted to go to school too, that was possible, on occasions.
(i recall when i started pre-school my brother was lost, and found because he had followed me to go to school too)
Ive known plenty parents who choose the free-school rather, some for ideological and some for more socio-practical reasons, but that felt a bit too narrow(minded).

^^^^This

It is very hard to trust them when it comes to this stuff. My school district really wanted to avoid the costs of testing at all costs. Let's put it this way, when they wanted to reduce some of the services my son was getting (which made no sense to do based on where my son was in terms of the goals in his IEP) I asked for testing to justify the decrease. (Just like they required testing at the outset to get services -- makes sense right?) They told me the testing cost too much, kept trying to convince me, and then when they realized I wasn't going to sign off on iit -- apparently decided they preferred not to attempt to reduce his services, if they had to pay for the tests.

Probably the whole point in the first place was they were looking for places to cut costs, and they knew damn well, the cut was not warranted but gave it a big push, anyway. They were not going to pay for testing that they knew was not going to indicate what they wanted, and for all I knew maybe we were not getting enough services in those areas.