found out today....

iVillage Member
Registered: 05-23-2006
found out today....
7
Wed, 05-24-2006 - 9:01pm

Today Sean's therapist agreed with our AS diagnosis. She said she had been considering it for a while (yeah, sure) but was worried how we would process it. She wanted me to read the "official" dx in the Psych Guide (which I already had). I think she was a little worried I was so relieved!

But a "normal" kid who behaves the way Sean does, is headed for serious trouble. Now I know that the "I hate you" isn't really directed at me...or maybe it is...but it somehow doesn't carry as much weight. Now the tantrums have meaning. Now I know he isn't just "being difficult" or "being a brat" or "being spoiled".

Sure I'm sad for all the things I've lost...and the troubles we will face. I came home from the therapist with a call from one of Sean's classmate's mom. Sean has said mean things to her son and hurt his feelings. When I confronted DS he admitted it (he cannot lie) and just said he doesn't like the boy. This does make me sad...for the birthday parties and playdates that won't happen, school events he won't attend, things he just will refuse to participate in.

Now a question....who have you told and how? I said something to my mother but don't want to say anything to my dad and step mom. They won't react well (only because they think the boy can do no wrong and that his problems are everyone else's--including my---fault). Also, my sister is mentally challenged and I KNOW my parents would end up telling Katie who would end up telling Sean....

Do I tell the parents who call with concerns or just apologize and thank them for callling (knowing they think I'm a terrible mother for letting my son behave that way)?

And have you told your kids? If so, what? I found a camp that specializes in Aspergers....so how do we explain it?

I know that teachers will know because of the eventual IEP, but what about others in the community. Do you treat it as "need to know" or what. I don't want the DX to excuse bad behavior, rather explain it. At the same time....I don't want DS to feel anymore different than I know he feels....although I really don't think it would bother him.

Finally, any books you recommend? I have a ton coming from the library, but didn't know if there were particular ones. DH is in a little more denial...he says we treat DS totally normal and that he will "grow out of it". I say we will need to modify punishments accordingly....you cannot effectively punish a kid who cannot read...you cannot punish a kid who cannot be empathetic. Not to say he can be rude and disrepectful....but I think the discipline will need to be modified....true? And, I don't think DS will "grow out of it" but rather, learn to compensate. He realates WONDERFULLY to adults (which is why I think everyone will be shocked to hear he has AS) so, as he becomes an adult, I think this will be less of a problem.

Sorry I'm so full of questions. Thanks for listening and all the advice.

somegraphx (Sean: 8, Erin: 6)

Somegraphx

Sean 2/8/98
Erin 1/26/00
EDD for #3 4/9/08

Avatar for insideout418
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Registered: 03-25-2003
Mon, 06-05-2006 - 10:58pm

Hi somegraphix.


You've gotten some great advice around here.

Follow me
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Registered: 03-26-2003
Thu, 05-25-2006 - 8:36pm

EXACTLY.....it's the teacher's fault for assigning HW that is too difficult....LOL.....I've heard that many times myself.

Christie

iVillage Member
Registered: 03-26-2003
Thu, 05-25-2006 - 7:15pm

LOL, good point on the not taking ownership thing.

My kids "talk doctor" aka clinical psych explained to me that most AS kids have a hard time with taking ownership often because of perspective taking. They cannot see how thier behavior affects others. Thus it is always the other persons fault.

Perhaps that is why my kids haven't used AS as an excuse. They also are not good at manipulation. So to use AS as an excuse to get out of doing work just doesn't dawn on them. They just flat out get non-compliant and refuse if they don't want to, lol. Having that problem right this very second. I have kids flat out refusing to do thier homework. Typically they are just fine about homework. It is a routine and they do it. But both have particualarly tough homework tonight and both have had a particularly tough week in school. Really it is their AS that is making HW so tough tonight but htey haven't used it as an excuse and still have to do it or no electronics (that is our system here). So far it is looking like there will be no electronics in our house tonight, lol. But not once have they said "I have AS I can't do it". The correlation hasn't occured to them. Cait may melt down and just tell me it is too hard but it isn't because of her AS to her. AS is just part of who she is and it isn't her fault (or her AS's fault) that the homework isn't getting done. It is her teachers fault for assigning work that is too hard.

Renee

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Registered: 03-26-2003
Thu, 05-25-2006 - 11:40am

Hi! My son is the same age as your son and I sat down with him about a month or two ago and explained aspergers as best I could to him. I told him that he has a disorder called aspergers. It means his brain works differently from others.....not wrong or defective....just different. I said his aspergers is the reason that he gets anxious, frustrated and overwhelmed (which cause his behavior problems) but his aspergers is also the reason for him reading and spelling way beyond his peers. It is the reason he can do multiplication and division in his head. I tried to show him his strengths as well as his areas of weakness. I also made sure that he knows he can talk to me about this at anytime.....ask any questions he had or has.

Son has been seeing a behavior therapist for over a year now.....he refers to her as his talk doctor and she is one of the people who are helping him learn to control his emotions and actions/reactions.

So far he has not used his disorder as an excuse for his behavior. He is not that great at taking ownership for his choices yet but he is working on it. He is getting better at noticing when he is starting to get overwhelmed and removing himself from the situation (he is allowed to leave the classroom to go for short walks to help him collect himself and calm himself down.....so far he has not abused this priviledge).

As far as telling others.....our families know....not sure how much they actually comprehend but they know. Any teaching staff that comes in contact with him know.....I recently told the bus driver due to an incident resulting in another child's lip bleeding (son swears it was an accident....the other swears he did it on purpose....they have made up and are friends again so who knows). Some families in the neighborhood know, due to Vaughn (my son) having a meltdown in their house or yard.....I had to explain what happened and why. A couple of kids he goes to school with know because we have seen them at therapy appointments or I met their parents at support group meetings....they have similar issues.

You mentioned that your son does not like to write.....my son hates writing as well. It is in his IEP that he is allowed modified writing assignments - he is also allowed to have a scribe (someone to write for him from his dictation) and recently they started allowing him to type out his answers on the computer (like your son, mine likes computers). That's what IEPs are for......Individual Education Plans based on your son's strenghts and weaknesses......make sure you contact his school district to start the process as soon as you can.

I've rambled on enough.....I hope some of this helps.

Again, welcome here.....don't worry about asking too many questions......that is what we are here for...to learn from each other

GL,
Christie

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Registered: 03-26-2003
Thu, 05-25-2006 - 9:49am

Hi there,

I have heard some mom's having trouble with thier kids using it as an excuse. I am lucky, mine have not really. Not sure why. I don't allow it as an excuse if it comes up. I know Cait's teacher has addressed that with her students.

Will write more later. I am being beckoned.

BTW, the Aspies are 12 and 10, my others are 8 and 6. 6yo has his own issues but they are mostly sensory and regulatory in nature.

Renee

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iVillage Member
Registered: 05-23-2006
Thu, 05-25-2006 - 7:04am

Thank you so much!

I did find the book about the 10 year old boy and it sounds wonderful. Sean would probably love the book. He's VERY bright...I mean, he "failed" his school's IQ test on purpose ("It just got boring"). And you are right...he is giving himself bad labels already--saying he's "bad" and "stupid". I just want to make sure that he doesn't use AS as an excuse--"I'm allowed to say mean things because I have AS. I can act out in class because I have AS". And I don't want it to be a crutch for not trying new things. And too, he would say, "if it isn't about mythology...then really Mom, who cares?" (At least his current obsession is quite interesting and educational).

For me, I look at AS, as more of a teaching/learning device (I'm a trainer/adult ed teacher)....he CAN be AWESOME in spelling...knowing how to spell ALL his second grade words. Recently they got harder (generous, general, magazine) and he was freaking out. Usually when he misses a word when we are practicing, he has to write it out 5 times. This time it didn't go so well and was getting really frustrated. I know that writing is one of his weaknesses (and his handwriting is awful). So I had him just spell them for me out lout. He got every one! I think some of his problems are getting what's in his brain down on paper. He's so creative with stories that I always say to write them down and he would get so mad and angry (meltdown)...now I understand why. Now I know why he has such a terrible time in reading group. He would read the book in two minutes...and pretty much have it memorized. But when it came to writing down answers to what he read, he would lose it. I can see how curriculum is going to need to be modified. He loves the computer...I think I might either start having him answer the reading questions verbally first and then type them into the computer. He would probably think that was great fun!

Thanks for your advice! How old are your two? I'm still learning everyone's name and kids.

somegraphx, Sean 8yo, Erin 6 yo

Somegraphx

Sean 2/8/98
Erin 1/26/00
EDD for #3 4/9/08

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Registered: 03-26-2003
Thu, 05-25-2006 - 12:03am

Let me share with you one of my favorite sayings and mottos "To not speak of autism is to make it something unspeakable". I don't want anything about my kids to be unspeakable or something they are ashamed of. They are autistic. I can't change that. But I can affect how they accept themselves in the long run.

Basically with the kids I treat autism the same way I would treat discussions of sex or if they were adopted. I wouldn't sit down with a child and have a long conversation, but I answer questions as they come up and present it as they individually are ready to hear the information. I wear an autism awareness bracelet and have an autism bumper sticker.

Your son will mention it eventually. He will ask why he is going to doctors or why he is different from his friends or why things are hard for him. Rather than hide the truth it is good to answer his questions honestly.

Acceptance starts early. I have always taught them about all kinds of differences. We are fortunate. DH and I are both in special ed. We have always known a variety of people with differences. The kids have always been told that everyone is special and important. Everyone has gifts and strengths regardless of what they look like, talk like or act like. And similarly everyone has things they are not good at and need help with. So when it came up that they were different it wasn't that big a deal. It can be sometimes but overall they have a healthy attitude about it. My son doesn't discuss it much but then again he doesn't discuss anything like that much. Unless it has to do with his obsession de jour, he really isn't that interested.

Yes I tell others. But if you are worried they will tell your son then you need to make sure he has the information first before they do. I am open about the autism. I don't want to make it a thing of embarrassment for them.

Yesterday at the park a mom came up (my boys had been difficult and I thought I was in trouble). She said she thought from how patient I was and how I talked that I must be a therapist. I said "No I have 2 children with autism". It immediately openned up a wonderful discussion AND my kids weren't judged as naughty and brats when I was there but seen rather as kids who needed to be interacted with in a bit of a different way. I was also able to teach the mom a bit about autism.

I carry Asperger Cards in my wallet. Mike can be difficult. He can look odd in public sometimes (getting better all the time though). I carry cards with me incase I need to explain to someone quickly. They work wonders and I have given many of them out already.

Your son will have labels for himself if the proper one isn't given. Be it weird, stupid, nerd, etc. By giving him the proper tools to understand himself it will help. Autism/aspergers does not go away. Hiding it from him won't make life easier for him. However, I wouldn't come out and give him all the ASD data until he is old enough to understand.

There is a great book out there called "Aspergers, what does it mean to me". It is a workbook to do with your child. It is meant for older elementary and early teens. Depending on where he is at 8 may be an ok age. I bought one for Mike and one for Cait. Cait finished hers in 2 days and loves it. She showed everyone and still does when she needs to. It tells about her and explained AS to her. Mike still isn't ready. He will do it when he is.

Also, the book "Asperger Syndrome The Universe and Everything" is written by a boy with AS when he was 10. That is a great one too. Mike and I read that together. He really liked that and it helped him understand.

hope I wasn't too long winded. Right up with early diagnosis, this is my next thing to preach about. Not being embarrassed to be different. If our children where born with a physical difference how would we respond then. The problem is that our children have an invisible disability, but that doesn't make it any less a disability. However, often our mindset is quite different. They are who they are. They are challenged but they are wonderful, autism/aspergers and all.

Renee

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