PDA

View Full Version : OT: Any moms of Asperger's kids?


TwoLeftNeedles
03-04-2006, 07:32 PM
I have a 7 year old that's newly diagnosed. We're reeling. Most importantly, we're having issues with the school and I need advice from someone that's been there.

When DS's anxiety levels skyrocket and he loses it, he has a tantrum. When he melts down, he'll hit if someone tries to touch him. If someone tries to talk to him, he'll run or start head banging.

The school keeps treating this as a disciplinary issue. He's not been allowed to go to recess (his favorite thing) for weeks now. So his anxiety is even higher knowing that he's being viewed as a bad boy that needs punishing.

(The VP actually told me that if DS would just sincerely promise not to hit he was sure it would stop -- obviously he thinks DS is in control of his behavior and is choosing to act this way).

If you've been through this... what do I do? It's gotten to the point where I am keeping him home to protect him from the teasing and shaming.

Ingrid
03-04-2006, 07:55 PM
I don't have a child with Asperger's, but work in a school where I have been acquainted with several students with Aspergers. One of our elementary schools has a class and program devoted to it.

My first suggestion is to do research on it. There are different degrees, of course, but it is in the autism spectrum. Actually Crissy on this site is an autism specialist. Maybe you can pm her for resourses.

I attended a lecture on Aspergers given by one of the staff psychologists. Maybe you can find one who is knowledgeable about Aspergers and you can work together to better understand your son's view on the world, and how best to help him deal with our world.

It will be a twisty road for you, but the students that I've met with Aspergers are generally quite intellegent--they just see the world differently than we do.

I absolutely agree with keeping your son home right now. I don't know if that is considered the "correct" thing, but there's time in the future to learn what he would learn in school, which can also be taught at home. But to be punished for what you can't control, and to have no clue how it is you're supposed to act, is too difficult for a small child.

From what I recall, facial expressions, body language and the like are not meaningful to kids with Aspergers. It's like being told to do something in a foreign language and then getting punished for not following directions.

You are your childs best advocate--be the squeaky wheel and find out what services are avialable though the school system, too.

TwoLeftNeedles
03-04-2006, 08:30 PM
Thanks, Ingrid. Any kind words are a blessing right now.

I'm researching as fast as I can, but I know so little that it's easy to doubt myself. Especially when going up against folks who have reason to claim expertise. After all, that VP has seen hundreds more children than I have. Then again, I've spent far and away more time with mine than he has.

Darhain
03-04-2006, 09:06 PM
Then again, I've spent far and away more time with mine than he has.

This is key! Trust yourself to know your child and what is right for him. You are his best advocate!

I don't, personally, have a child with Asperger's. I do, however, have a lot of information regarding dietary changes as a form of "treatment", if you are interested. (My best friend's son has Asperger's, and my DS has behavioral issues, all of which we've been treating via nutrition.) Just PM me and I can give you a lot of good links/info.

A big HUG for you, mama! And another one for your DS!

Jan in CA
03-04-2006, 09:13 PM
I'm sure Cristy will help you out when she sees this.

My daughter had a child with Aspergers in one of her preschool classes and had some links.
Cure Autism Now (http://tinyurl.com/f7uvt)
Asperger Disorder Info and support (http://tinyurl.com/t9dh)

ecb
03-04-2006, 09:39 PM
feel free to E-me privatly
I dated a woman in MD who is not only a special Ed teacher, but her oldest daughter has aspergers (I cannot spell for bean)

I can FWD a commnication from you to her

I hope your son does well
I know her daughter is an aspiring French hornist, and a great kid (if a bit of a fussy eater)
and we are still Good friends (both Mom and Daughter I consider my friends)

Good Luck

ecb

TwoLeftNeedles
03-04-2006, 10:22 PM
Nutritional info is welcome. I was skeptical about suppliments, but then I fixed my PMS by taking more calcium. Doh!

And Jan, thanks TONS for those links! The Cure Autism Now site had a link to Advocacy Inc in Texas which had a whole big paper on what I have a right to ask for on behalf of my son and how they must handle disciplinary stuff. I know now that I can reasonably ask for a paraprofessional to assist him at recess and during unstructured times and they can't use the money/staffing excuse to turn that down. :happydance: :happydance:
Doesn't mean I'll get that, but it will clue them in that I've wised up some, at least.

And :lol: on the picky eater... DS is not only a picky eater, he's a picky smeller!

DS's AS has snuck under the radar for years (though he was called ADHD) because he can do things like enjoy fiction, tell a lie (yes, that's something lots of AS kids can't do), and he's not hung up on some obscure topic. But other signs he has in spades, like sensory sensitivity, unable to handle eye contact, and utterly unable to read social signals from children.

I know that if I can keep his self-esteem together through childhood, he'll be fine if a bit eccentric as an adult.

Ingrid
03-04-2006, 10:26 PM
It sounds like you have a wonderful attitude of acceptance. Reading what you wrote actually got me misty eyed. Absolutely go the route of getting an IEP for your son--individual education plan. In New York, every school district has a Committee for Special Education which determines and commands what special services are required. A school cannot refuse to implement them.

margie
03-04-2006, 10:26 PM
I don't have a whole lot of advice, but wanted to chime in with my support. I have an 8-yr old son who has several asperger's-like tendencies, and have read quite a bit about it as a result. It is so hard when your child doesn't fit the mold that others would like to place them in. I agree with what Ingrid said- be the squeaky wheel. This school year I decided to do just that- we have had so many times when I doubted my instincts, or was afraid to stand up to the teachers or other people in the school district. At the beginning of this school year I made up my mind that I would do whatever I had to to make my child's school experience more positive for him- even if it gave me a reputation in the school as the PITA mother. My son is extremely gifted, extremely introverted and has emotional issues. School isn't great for him, but it is better. We start therapy next week, and I'm hopeful that this will help even more. I hope that you are able to find the answers that you are looking for, and the help that you need for your son. :heart:

aylaanne
03-04-2006, 10:27 PM
My 16 year old brother has aspergers, as does my 15 yo cousin, and I have lots of experience with it. It's very important that the teachers be educated in how to interact with your son. Routine and consistancy will be very important to him, as well as having a teacher (and a one-on-one aide is NOT a bad idea in the early stages of learning how to cope with this) who has the patience and caring to carefully help your son through a meltdown until he can come to the other side.

My brother has the exact same kind of tantrums as your son, and there have been times where I or my parents have had to physically restrain him, times when I've gotten bruises from him hitting or biting me or some other such thing that he does out of frustration with himself and the world. My family has worked very hard to get him to understand that acting out like that is wrong, but we've also worked hard to make sure that he knows that we love him unconditionally, and made sure that the school was dealing with him appropriately at all times.

Taking away recess is probably not the best mode of punishment for your son's behavior, although there still should be a consequence, it should be less overtly punitive and work more on helping him build a cognitive toolbox to help him overcome some of these behaviors that, right now, he has no other method of coping with.

If your son is not currently seeing a psychologist, I suggest that you might want to consider taking him to see one, as well as seeing one yourself to deal with your feelings about this diagnosis. It's okay to feel angry, hurt, bitter, or guilty about the diagnosis, and it's important that you have an outlet to work through these feelings. A psychologist or a social worker can also help you find the resources you need so that your son can be successful in school and so that you can support him adequately.

The most important thing is to remember that YOU know your son, and YOU make the decisions about what's best for him. The public schools are REQUIRED BY LAW to make concessions for your son's disability, and you are the perfect and best advocate for your son in every arena.

Good luck and keep us posted. If you ever just want to talk, vent, or whatever, you can email me privately.

Good luck,
ayla

geekgolightly
03-04-2006, 10:37 PM
And Jan, thanks TONS for those links! The Cure Autism Now site had a link to Advocacy Inc in Texas which had a whole big paper on what I have a right to ask for on behalf of my son and how they must handle disciplinary stuff. I know now that I can reasonably ask for a paraprofessional to assist him at recess and during unstructured times and they can't use the money/staffing excuse to turn that down. :happydance: :happydance:

thats awesome. im so glad that you know of law on your side and that texas has made that law available. good on you!


DS's AS has snuck under the radar for years (though he was called ADHD) because he can do things like enjoy fiction, tell a lie (yes, that's something lots of AS kids can't do), and he's not hung up on some obscure topic. But other signs he has in spades, like sensory sensitivity, unable to handle eye contact, and utterly unable to read social signals from children.

I know that if I can keep his self-esteem together through childhood, he'll be fine if a bit eccentric as an adult.

i've been suspicious for a while now that my husband is undiagnosed aspergers, and this list makes it all that much more undeniable. my husband has always had uncontrollable tantrums (better since he has been with me. also, i am his first and only relationship), he doesnt like to look people in the eye, he doesnt know how to lie, he becomes obsessed with topics and learns them like a scholar (right now its computer programming, but will only learn the academic languages and has become a resource on the net for scheme), and although he cant figure out people in relation to himself, he is a keen observer of behavior of others in relation to themselves or other people.

as an adult, he is considered eccentric, but i find him to be facinating. and tender.

even with the diagnosis, if it comes to be, your son can grow up to be a happy and fufilled human being. the best anyone can hope for, right?

Sara
03-04-2006, 11:15 PM
My story with DD is incredibly long and involved, so I won't even try to put it all down here. We think she probably has a mild case of Sensory Integration Dysfunction, but we haven't asked the school to evaluate her. She's in kindergarten. We don't want to have them misdiagnose her problem (if she has one). We just ordered a couple books a few days ago on the subject and once they get here we'll try to figure out how to get this done. I don't want to start with the school.

There are so many clues to her behavior, and no one on the outside can see how different she is with us from how she is in the classroom. She is so sweet, it's really hard to see her try to interact with the other kids. She plays in tandem with the others, but can't join in because she doesn't understand that they don't automatically know what she's thinking. It's very hard to explain. She does very well one on one, or in her small dance class, but when she's in the schoolroom with 18 other kids it's just too much and she ends up in tears.

This is all so new. We're trying to stay as calm as possible and work things out before we say anything about our suspicions to the school. Her teacher has offered to have the guidance counselor evaluate her, but we asked her to wait a bit. She says that she loves having Emma around (she's really funny and an original thinker), but she's worried that Em will have more problems when she gets into grades where she has to be more self-directed.

The food issues are the most frustrating, but I feel better now that I think it's not just bad parenting on my part! lol

It has also been disheartening to have her put her hands over her ears every time I sing. (I'm really good, honest!!)

:heart: Hugs for you. :heart:

I hope you find all the help you need. Stay strong, you know him best. Good luck!

Terri
03-04-2006, 11:19 PM
I do not have a child with Asberger's HOWEVER I work in a preschool for children with special needs (we also have typical kids). DO NOT ACCEPT their plan , especially if it is making things worse for him. His evaluations should be shared and a behavior program should be set up by specialist in that area. Does he have an IEP yet (Individualized Educational Plan)? This is a plan between parents, teachers, and other needed staff (PT/OT/speech/behavior). I hope this helps a little bit.
Terri

Cristy
03-04-2006, 11:54 PM
Holy Heck...Hey there--I'm still skimming through this thread but I would be more than happy to help--while I work for a school system--I'm a huge advocate for these kids. I can probably help you through the problems with your school system just by knowing the "ropes". Please PM me some specifics and I'll see what I can do...in the meantime...I'm going to go back and finish reading this thread--just wanted to offer my help! :)

Cristy
03-05-2006, 12:12 AM
okay, I've sort of caught up and let me say a few things:

I have a million websites to send you to...just pm me...
are you in Texas? My sis's best friend is in Texas and she has a son w/ AS


I tend to disagree that there should be a consequence for your sons behavior...at least at first. Individuals on the spectrum are typically extriniscally motivated and are more likely to be motivated by activities or primary reinforcers (such as food items). The very first thing that has to happen--behaviorally speaking--is that your son has to be able to make a connection between "appropriate behavior" and it's rewards. By doing this, inappropriate behaviors will enter what we call extinction--the behavior will go away. When your son is able to see that behavior 'A" (let's say raising his hand to be called on) gets the attention he wants (in the form of the teacher's attention) he will be more likely to raise his hand than if he engages in behavior 'B' (yelling out) and is ignored by the teacher. This is a short, very simply put explanation of extinction. If the function of his behavior is to get attention and "A" gets him that and "B" does not, "B" will tend to disappear and "A" will increase. Make sense? The same thing has to happen with his tantrums...He has to FIRST be taught the correct way to deal with frustration (b/c this is not inherent for these individuals) and THEN he needs to be rewarded (in whatever fashion is rewarding to HIM) in order for him to see the relationship between his actions and a desirable outcome. Once he can see that--his tantrums will stop b/c he will begin to understand how one behavior gets a reward and the other does not. Over time, physical rewards are faded away and the appropriate behavior will typically sustain itself. Behavior is very complicated--especially in autism spectrum disorders--but it can be successfully shaped if the function of the behavior is identified and then shaped appropriately. You really need to ask if your school system has a Licensed Behavior Specialist--you're looking for someone w/ their BCBA (it's a behavior certification--it's a national thing so they ARE in Texas too) or at the very least---someone with a lot of behavior experience preferably, in Autism. If they know behavior and they are at least familiar with the basics of autism spectrum disorders...they should be able to help. I would also inquire as to whether or not your school system has an autism specialist and if they do not, I would request that they find one to do an evaluation of his educational programming.

I don't want to get too carried away here--I have a million recommendations b/c this is what I do for a living (hell, who am I kidding...can you tell it's my life/my passion?!?!? along with knitting...lol). If you'll PM me, we can go through this more--I'll respond with an email address that I check frequently so we can discuss this w/o doing it on KH if you're interested.

HUGS--I know how frustrating this is--it is a correctable problem! ;)

origami
03-05-2006, 12:17 AM
Hi there!

I have 2 kids who are on the autistic spectrum. They do not have Asperger's Syndrome, but rather high functioning autism.

Your school is definitely not handling things well. Kids with Asperger's and autism has social and communication deficits. How in the world can they possibly learn how to cope if they are excluded from recess. What your son needs is support and assistance so he can participate and be included in recess.

Too many schools view recess as a "break time" for teachers. Well, okay, but many students -- even "neurotypical" ones -- need structure and support during recess time. Recess is possibly one of the most difficult times of the day for kids on the autistic spectrum. That doesn't mean they should be kept out of recess. That is punishing them for their disability. That is what is happening to your son. Has your school done a functional behavior analysis to determine just why he has problem behavior during recess? Request that they do a functional behavior analysis.

Your vice principal needs education. But of course, you know that already.

Does your school have a bullying policy? Is your son reacting to teasing during the recess time?

Does your son have an IEP? (A 504 plan isn't the same as an IEP and does not carry the same weight.)

TwoLeftNeedles
03-05-2006, 12:47 AM
Bless ALL of you! I am in tears (good ones at least) over the warmth of your support. It's been such a harrowing couple o' weeks....

He has an IEP, but it really only addresses dysgraphia. There was a discussion of a FBA, but it really only addresses consequences. I'm getting a better idea now of what it SHOULD have been.

I have a meeting with the school on Monday, and I know that I need to point out

* that the IEP and BIP don't sufficiently address prevention and intervention but are too heavily consequence focused.

* that they are essentially excluding him from a school activity because of his disability instead of making the required accomodations to make it possible for him

* that the staff who normally interacts with him needs training, or he needs to be placed with staff already trained.

margie
03-05-2006, 08:48 AM
Good luck with your meeting!! Remember to make a list of the things you want to address with them. I get very emotional, and then forget half of what I wanted to say.
:heart:

aylaanne
03-05-2006, 09:41 AM
Good luck! Remember, YOU are the expert on your son. Trust your gut, and if you think something isn't going to work, make sure it doesn't happen that way! I'm so glad that there's so much knowledgable support here on KH for you to call on. :D

knitncook
03-05-2006, 10:53 AM
My son is high functioning autistic with aspergers. (a mouthful!) School was not a good fit for him. He was so miserable at school that we ended up homeschooling him. It was the best thing for both of us (actually all of us). We tried getting him special assistance at school, but he went to a school that was so overwhelmed with children with "high needs" that his seemed pale in comparison and we were not given the help we so desperately needed. Fortunately, he didn't have quite the discipline problems that you seem to be going through. His autistic tendencies would cause him to shut down when stressed, so he was pretty oblivious to what was going on. He was labelled a "good child" because he wasn't one of the ones that was jumping on the tables or coloring with marker on the walls or running in circles screaming. He was the child that was curled up in his chair distancing himself from everyone else. The bad thing was that he would come home and literally explode. At home was where we saw all the frustrations and anger and confusion that was inside of him. It was truly sad.

We "unschool" our children and that has been one of the most wonderful experiences for him. He sleeps when he is tired, wakes when he is rested, eats when he is hungry, plays when he has energy and is learning all the time. We have way fewer issues with anger because he is in an environment that is soothing, peaceful, and which I *try* (quite unsuccessfully, but I try) to keep organized.

There are programs that I have read about that are excellent for children with aspergers in the school system. Sadly they seem to be few and far between and when you do find them they are grossly understaffed. I hope you can find something that works for your son. It is a very hard and confusing place for him to be in. ((((HUGS))))

countingsheep
03-05-2006, 12:11 PM
OK, first let me say... THERE IS HOPE! Next... YOU ARE NOT ALONE!!!

There! My son is now 14. We were so blessed to have had an encounter with a brilliant school psychologist (no, not an oxymoron) when he was 5. Her suggestion was putting my son into BD classes - behavioral disorders. We were strongly opposed until we met the teacher and observed the class. The basic principal of the class was - for every action, there is a reaction. There were very set "punishments" for certain behaviors and a behavior chart. It was a small class and my son ended up being the star student constantly! One thing that helped was allowing him to take something to comfort himself when he was about to "lose it"! He had a stuffed Thomas the Tank Engine that he was allowed to take everywhere and when he got upset, he would talk to it. Over the years this progressed to a Batman action figure, a dinosaur toy and other small things.

As I said, Connor is now 14. He is on the honor roll with all A's and B's. He is about to start high school on a college prep tract. He is currently in two (as he calls them) SPED classes because these particular reg ed classes were just overwhleming to him - too many kids!

I tend to disagree with what Ingrid said about the kids not getting those subtle nuances of facial expression and things like that - my experience is that my DS REALLY gets them! He is an extraordinarly empathic person and takes those nuances to heart. Casual cruelty (rampant in middle school) cuts him right to the core. His intelligence is just terrifying to me! In 3rd grade when he was on a "mummy" kick, he turned in his homework all written in heiroglyphics. Luckily his teacher was amazed and went to the trouble to grade it in that form rather than punish him - it was 100% correct! His retention of information is amazing!

You have quite an adventure ahead of you - and please, consider it an adventure! Everyone is right, do your reasearch! There are some wonderful people out there waiting to be found. And... trust your instincts! You know this kid better than anyone ever will. Believe it or not, you know what's best! You are his greatest asset and ally! Be prepared to fight for him which is not always fun.

Don't forget to take care of yourself throughout this adventure, either! There are, as you can tell, plenty of us who are more than happy to lend an ear or a shoulder whenever you need it. You really are not alone in this. Our experiences are as different as out children but... we do understand and care! I think one of the main problems with Aspergers is that... no two cases are ever alike and there is no simple treatment that works every time.

Sorry that this was so long but... I was you 9 years ago. The difference is that you've reached out and I was embarrassed for so long - never of my DS but of my own short-comings. You are in my thoughts and if you ever need me... I am but a PM away!

With a hug, Angela

origami
03-05-2006, 06:30 PM
There! My son is now 14. We were so blessed to have had an encounter with a brilliant school psychologist (no, not an oxymoron) when he was 5. Her suggestion was putting my son into BD classes - behavioral disorders. We were strongly opposed until we met the teacher and observed the class.


Counting Sheep - You are very lucky. Some school districts will suggest putting students into Behavior Disordered classes but then do a poor job of followup. Many experts consider Behavior Disorder classes to be the worst possible placement for kids on the autistic spectrum -- of course, it worked out very well in your situation, but in some districts it could be hugely disastrous.

The problem is that some children on the autistic spectrum will get taken advantage of by other kids. It sounds like your son is quite high functioning and also has excellent support from teachers and of course from your family. It sounds like that teacher really did a great favor for your son, but I'd be wary in general of behavior disordered classrooms for my child -- I think it would not be a good placement for my child.

countingsheep
03-05-2006, 08:38 PM
As I said, we were blessed! Right teacher (a true Angel!) , right situation for us, right timing for my son. Plus... I was hard-core involved!

Each and every situation is different - each kid is different! This is such an adventure no matter what.

Maybe my main advice is - keep an open mind, stand firm with what you KNOW about your kid and be their advocate.

He is a super cool kid and very bright. But if I ever have to watch "Beauty and the Beast" again... :wall:

Ang!