Asperger's ......

nun69

nun69

New member
does anybody have a child with this and can you tell me how you cope, things you do with them, things that seem to make them happy, and anything else I might need to know? It is higly likely that Peyton (my kindergartner) has this, but right now he still needs an actual daignosis, but this is what the school supsects so I kind of want to get my ducks in a row and learn what I can now :)
 
No experience to give you advice but just wanted to send HUGS.

I found this book that looked like it might be interesting. The author says she has Asperger's and her children do also. The title of the book is:

Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger's Syndrome
 
I teach 3-5 year olds who have autism and asperger's. Routine is key. Do the same things every single day in the same order and if it's going to change, give a warning early. Love and understand. I love kids on the spectrum. They make life so fun!
 
I don't have very good advice either - but just wanted to send you some support!

My nephew is autistic - which is further along on the spectrum than Asperger's. He's a handful (but a wonderful, sweet handful), and I think what my brother and sister-in-law have learned has been from experience - I'm not sure how much a book can prepare you - although knowledge is always a good thing, and you'll need all of the tools/resources you can get. My sister-in-law is part of a very supportive autism community, and my niece, who is a couple of years older than my nephew (she's 10), has been going to a support group for siblings of kids who have autism. I know that's been a positive experience for her. I think, although I'm no expert - the most important thing to do is get a diagnosis - because I know in Pennsylvania, counties are required to pay for additional necessary educational services for children with special needs.

I've babysat a couple of times for my friend's daughter who has Asperger's - if she hadn't been diagnosed, I probably wouldn't have known she had a diagnosis). She's just kind of quirky about her things, and everything has a pattern, a particular order, to her. When my friend,her mother and I have talked about it - she thinks the portrayal of the kid on Parenthood is spot on, and a really accurate depiction of a family dealing with Asperger's.
 
Avery was diagnosed with Asperger's last summer, but it was something I'd suspected since he was in Kindy. I'm not going to sugar coat it...it is so not easy. Some days are good..some are really bad.

This year we finally moved him from private school to the public schools and although I was worried about how well he would handle the move he is really doing so much better in such a better atmosphere. He's in an inclusion classroom and has a WONDERFUL teacher. She is so good with him and that makes a HUGE difference. We also have him enrolled in the DORE program and it is honestly amazing how much he as improved with it.

Here's the thing about Aspies...their brains just work differently. Avery's therapist described it to me this way. His brain works literally like a computer who's processor is on the fritz. He constantly has information coming at him from all directions all day long and the part of his brain that is supposed to take that information and sort it where it needs to go isn't working right...so the result is that he gets overloaded with the "everyday" stuff that we all hardly notice and the results are frustration and anxiety which lead to meltdowns.

Oh the meltdowns...it's so frustrating to have a 7 year old who will throw temper tantrums like a 3 year old but it's just a part of it. Aspies have meltdowns..it a major characteristic of Aspergers. And lots of things can set them off. When Avery has a meltdown the thing I've learned is to set him in a chair by himself and let him calm down first. Trying to discipline him in the midst of a meltdown just won't happen. We handle that afterwards.

Other things we deal with is his OCD, and obsessions. And socially he's immature..he has a lot of difficulty relating to kids his own age but this has improved this year as well. He gets along with adults much better.

He is SUPER smart....like scary smart and his teacher has referred him for TAG testing this spring.

He has sensory issues...loud noises and crowds set off his anxiety big time.

He takes everything you say literally. I mean LITERALLY..don't tell him "in a minute" b/c he will go count to 60 and expect you to deliver lol

I'm still learning everyday with Avery..I feel kind of like I'm peeling an onion and every layer holds a new surprise or challenge.

But as difficult as he is, he is also absolutely one of a kind and amazing.

The thing about Aspies is that as children and adolescents they struggle but as adults they are usually overachievers. We just have to get them there first :)
 
Do you watch Parenthood? Max Braverman has Aspergers and watching it has made me fall in love with him. I'm not sure how accurate it is, but it sounds a lot like what Nikki wrote.

Here's a clip.

The best part about it is that his sister told him what was great about him, and he pulled that out for the speech.

Hard yes, but still very lovable. Best of luck!
 
nikki that sounds almost exactly like Peyton.....and I have learned disciplining him during a meltdown does not work....
 
nikkiARNGwife said:
Other things we deal with is his OCD, and obsessions. And socially he's immature..he has a lot of difficulty relating to kids his own age but this has improved this year as well. He gets along with adults much better.

He is SUPER smart....like scary smart and his teacher has referred him for TAG testing this spring.

He has sensory issues...loud noises and crowds set off his anxiety big time.

He takes everything you say literally. I mean LITERALLY..don't tell him "in a minute" b/c he will go count to 60 and expect you to deliver lol

I'm still learning everyday with Avery..I feel kind of like I'm peeling an onion and every layer holds a new surprise or challenge.

But as difficult as he is, he is also absolutely one of a kind and amazing.

The thing about Aspies is that as children and adolescents they struggle but as adults they are usually overachievers. We just have to get them there first :)
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is he actually OCD diagnosed? Reason I ask is obsession on things goes hand and hand with Aspergers. My son gets so fixated on something (right now it's baseball..again) and that is ALL he will talk about, play, read about etc...gets so frustrating sometimes but that's just how he is and I have to change my attitude to deal with it.

Sorry to hijack Angie..((hugs)) Hopefully you and the school can get some actions in place to help your guy out!
 
Well it's just that OCD tendencies are a Aspergers trait. His compulsions have more to do with his routine. Everything has to be the same every day or his entire day goes into a tailspin. He also repeats himself...he'll say something 3 times instead of just once...things like that
 
ah ok was just curious if he was diagnosed OCD or just b/c of the Aspergers..I knew it was a trait of Aspergers
 
Ben has high functioning autism, which is similar to Aspergers in a lot of ways. He also has ADHD, a sleep disorder, sensory processing disorder, and a few more diagnoses. Some of the diagnoses he's had for years, but the autism and ADHD came this summer after his kindergarten special ed teacher suggested we get him tested. We brought it up with his pediatrician around January, but it was a long process. The multi-session evaluation began in early June, and we got our results in August.

It definitely adds a whole new layer of challenge to parenting. We have to be much more aware of how things will affect him than we do with our other 2 kids. I'm having trouble wording this because it sounds more negative than I mean it to be, but in some ways our lives revolve around his needs. It's not that our other kids are pushed to the background or their needs are ignored, but with the other 2 we can expect them to adapt and behave in most situations, especially if there are rewards (or consequences) involved. With Ben we have to control his environment rather than expecting him to adapt to whatever is thrown at him, and we're always conscious of that. When we aren't, he melts down.

Routines are a big part of our life. They help him feel secure. I make the major routines, like our daily schedule and the steps to get ready for school in the morning. Many of the smaller things that I don't make routines for, he does. Ben is fairly good about big changes as long as he gets advance warning. ("Big" meaning anything from a weekend away to running an errand after school.) It's the little changes that are hardest for him, like if I want him to put on his shoes before we brush his teeth or if we need to rush to get ready faster than usual. Rolling with the big changes better than the little is just one of Ben's quirks.

Because of his sleep disorder, Ben's meltdowns increase when he's tired. Mornings are his best time, and evenings are his hardest. It doesn't help that his ADHD meds have worn off by then, too. We try not to make evening plans that include Ben. Either 1 parent stays home with him, or we all go but take 2 cars so that someone can leave with him if necessary. That's another thing-if we're out and see signs that a meltdown is coming, the best thing for us is to leave ASAP. It happens less as he gets older, but it definitely still happens. If we're at home and he's having a major meltdown, I need to get him to his room and walk away. If we try to interact with him in any way during it, it goes on and on and on. If I leave him alone in a safe place, he's usually ready to rejoin us in 10 minutes.

Like Nikki said, Ben relates much better to adults than kids. He generally plays well with his siblings but has a hard time initiating or maintaining play with other kids. He isn't as literal as most kids on the spectrum are, and he has a good sense of humor. But he doesn't understand how to talk about other people's areas of interest instead of his own, does better with the concrete than the abstract, doesn't "read between the lines," and is immature for his age.

DH and I started watching Parenthood recently, and I agree that it's spot on. Ben is very different from Max in some ways, but the way Max's autism affects their family and daily lives is very well done. I read that one of the creators has a child on the spectrum. DH and I are still on season 1, but we love it so far.
 
omg Rachel...that sounds alot like Peyton too and we are waiting to have a sleep study done on him cause I seriously think he has a sleep disorder as well.....I swear he has more insomnia than my husband and I put together.....he also VERY MUCH has to have routine...my oldest gets him up for school EVERYDAY and the one day my husband stayed home and got him up for school, his WHOLE day was a disaster where I actually had to go get him at school because of his meltdown! And his mornings are MUCH better than anything after around 1 pm....And Rachel I totally understand where you are coming from because our lives truly revolve around Peyton and we have just kind of come to terms with that. But it is very hard for my 12 y/o and 7 y/o to understand.

the reason I ask these things is because now the school wants me to start only sending him to school in the mornings and I am going to pick him up in the afternoons (after lunch) until his full evaluation is complete. I just took him back to the general pediatrician(today) and she is going to give me a referral to Children's to their Autism Disorders Specialty division because she said they are much better equipped to actually evaluate him and decide if he truly has it or not.

so I am just trying to get as much info as I can now :) I am hoping that the new school he will be going to (once we have our meeting with the school now and the new school and school psychologist) will take him right away so he can make any adjustments now and now where he will be next year instead of it all being BRAND NEW and his brother and sister going to different schools next year (which I think we be so much harder on him)
 
MissKim said:
I teach 3-5 year olds who have autism and asperger's. Routine is key. Do the same things every single day in the same order and if it's going to change, give a warning early. Love and understand. I love kids on the spectrum. They make life so fun!
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This! Except I DID teach preschoolers and now deal with K-5 since moving to NC. Asperger's falls under the unbrella of Autism Spectrum Disorder (as well as PDD and PDD-NOS.). One of the hallmarks of Asperger's Syndrome is great language skills with the only exception being pragmatic language/social skills. So most of my kids benefit greatly from social skills practice (reading social cues, the "unspoken rules" of society, body language, peer relations, literal vs. figurative speech, etc.) So directly teaching some of those skills is necessary, but that can be effective for all kids really. I would say in my past 11 years of teaching, kids who have been identified and received services have all been successful in school. The friendship piece can be harder but again I'd you put the work into it, it makes sense to them. :) Hope that helps!
 
nun69 said:
the reason I ask these things is because now the school wants me to start only sending him to school in the mornings and I am going to pick him up in the afternoons (after lunch) until his full evaluation is complete. I just took him back to the general pediatrician(today) and she is going to give me a referral to Children's to their Autism Disorders Specialty division because she said they are much better equipped to actually evaluate him and decide if he truly has it or not.
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Am I understanding correctly... your child's current school thinks your child may have a spectrum disorder, so they want to drop her down to half day and then once they get the diagnosis and do paperwork, send her to another school? As an educator, that really irritates me. I'm sure they have reasons, but for heaven's sake, our job is to educate every child. Saying that a child might have a spectrum disorder doesn't mean that she needs less education until they can do paperwork and put her in an appropriate setting. That right there would upset me the most.

Also, I'm pretty sure that the "Asperger's" diagnosis is gone. The DSM changed and everyone just gets an Autism diagnosis now. It is a spectrum and there will be very high functioning children with Autism and very low functioning with a wide range in between, but I don't think doctor's can give an Asperger's diagnosis any longer. Part of that is tied to funding. It's easier to get funding if a child has an Autism diagnosis than for Asperger's or PDD-NOS (which is pervasive developmental disorder and a diagnosis doctors use for kids "too high" for Autism but not high enough for Asperger's). Just wanted you to be prepared for that.
 
I ran across this article a couple of weeks ago...b/c there are some wonderful things about Aspergers

http://njflatman.hubpages.com/hub/Seeing-the-Good-Side-of-Aspergers-Syndrome

I especially love this part b/c it is SO true.

Many people look at those with Asperger’s and see them as naïve. They do not realize if they are being picked on. They do not understand if they are the punch line to the joke. However, they also never do these things. Aspies do not have race or other boundaries. They love everyone. That naivety also makes them unable to backstab or manipulate another person or hurt them intentionally. They never pick on people. They do not look at those who are different as being less than them. They welcome anyone into their social circle regardless of sex, race, disability, looks or social status. They are all inclusive and are fiercely loyal to their friends.
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My son doesn't have Asperger's, but at this point, his autism looks and acts a lot like it. My best advice is to love him, which you already do, and trust your instincts. Don't expect him to perform like other kids, but you'll see him blossom in his own way and reach milestones unique to him that you can celebrate just as much. Just the other night my husband and I found ourselves sitting at the dinner table where all three of our boys (including our 10yo with autism) asking each other questions about their day and having a real conversation. It was amazing! When you remove the outside world's judgments (including ignoring people who don't understand why your kid is having a temper tantrum at that age), you'll be able to focus on what he needs and help him the best.

And also, yay for you! It's a privilege to help such a sweet soul and it will bless you and your family. You're supposed to be his mom and you can totally do this!

P.S. Erica Zane has a great autism kit, should you need to scrap your emotions!


 
hubby to be has aspergers. he was older when diagnosed though. however, i will tell you, even at 27, he thrives on routine. he moved out here in july, and was unemployed for almost a month while we were moving back here to buffalo. and he was freaking out because he had no routine. and i know that he gets all thrown off when the routine gets off. i'm so not a routine person, but now that i'm living with him, we have to have a routine or he's a mess.

you're actually from his hometown. i could call his mom and find out what specialists they saw, if you wanted? i know that he was older, but i'm pretty sure i could find you some resources if you were interested.
 
yes Kim...they actually have already done all of his paperwork and he will go to a different school, but in all honesty I truly think it is the best thing for him. The school he is at now, doesn't have the resources to really help him. I have actually been at this school.l (my other 2 kids go there as well) for the past 3 years, so I really do think they have his best interests in mind. He has an AMAZING teacher who is actually the one that has been trying to help him the most, but she doesn't have the extra help to give him some of the individualized attention he needs. I am not that upset about the 1/2 day thing and really think for now it will help him because he is really really struggling in the afternoons and I think the break will help him. It sounds like in all actuality that the school psychologist is really pushing Peyton's paperwork through so hopefully we will have a meeting and figure out the details within the next 2 weeks(maybe as early as next week).

The new school will have 1 teacher and 2-3 aides per 3-5 students and the school he is at now cannot accommodate that. Do you guys have any advice?

P.S. I did know that Asperger's has pretty much been taking out of the DSM and they are all Autism Spectrum Disorders with different degrees and I am totally ok with that :)
 
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nun69 said:
And his mornings are MUCH better than anything after around 1 pm....And Rachel I totally understand where you are coming from because our lives truly revolve around Peyton and we have just kind of come to terms with that. But it is very hard for my 12 y/o and 7 y/o to understand.
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1 pm was the start of Ben's "witching hour" last year, too. It was the point at which he really needed a nap, but refused to take one because there was so much going on at school. Now he's in first grade, and he's making it through the day much better. It also helps that his school switched to a slightly earlier schedule, so now they're out for the day before 3. There are still some days he's so tired that he falls asleep wherever he is at school, but his teachers are fine with it.

What sleep problems is Peyton having? Is it trouble settling down at bedtime, night wakings, or very early mornings? I think the most common sleep problem for kids on the spectrum is trouble falling asleep, and melatonin can work wonders. Ask your pediatrician or developmental ped first, but it's sold in the vitamin aisle. We used it with Ben for a while when he was waking frequently in the first part of the night, and it helped him a lot. (It can become less effective over time, so we used it on nights before school and dealt with the wakings on weekends or school breaks.) He had sleep apnea and had surgery for that just before starting kindergarten. We're about to do a second sleep study to make sure he's still apnea-free. His other sleep disorder is a lot more unusual-his circadian rhythm is set too early, so he's ready to go to sleep for the day much earlier than other kids and is up by 5 am most days.

My 9 year old has a hard time dealing with the way we things revolve around Ben, too. I just got some info about a social group for siblings of kids with special needs, so we might try it and see if it helps. Luckily my 4 year old handles it fine, but I don't know yet if it's because of her age or because she's more sensitive and willing to go out of her way for others than either of my boys is. Fingers crossed it's the latter!

I'm glad your school is fast tracking whatever paperwork they need to do to get him in the right environment for him. We're rewriting Ben's IEP on Monday and we thought they were going to recommend moving him, but they think they can continue to meet his needs where he is. We're lucky that there are a lot of special ed resources in our district. So Ben is in a regular classroom, but the school is big enough that they were able to group the 5 kids with more significant needs together in his class (the entire 1st grade has 100-ish kids) with a special ed teacher and an aide. The kids get pulled out to a small group setting as needed, and when they're in the small group there are 5 kids with the sped teacher and aide. If we were in a smaller school where he was expected to remain in the main classroom all day, he'd have had to switch schools, too. It's too much stimulation, and he needs too much support for a classroom with 20+ kids and 1 adult.

I was at a special needs conference today that our county puts on, and one of the sessions I went to was on increasing flexibility and executive function in kids on the spectrum. They talked about how most kids on the spectrum are very detail oriented and have a hard time seeing the bigger picture. Routines help them make sense of things in a world that's throwing too much info at them at once without a framework to help make sense of it. They showed a clip where an older kid (10? 12?) was talking about how his Aspergers feels. He described it as having his head in a vice, and every unexpected change tightened the vice a little. Eventually there were so many twists that he'd explode.
 
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