Some days, I just hate Asperger's...

[pcparamedics01]

Hi. My DS 10 was diagnosed today with Asperer's. He has ADHD,ASD and a visual processing disorder. One of the things the dr said we were doing that she definitely wanted him to continue is cub scouts. Have any of you tried scouting?

rerea



No we do Karate!!! It does a lot for him!!!!

 

[karynnix]

I just got finished with something and it has made a WORLD of difference in how the kids at school see my son. I actually went into the 4th grade classes one by one and explained what AS was and why Jack acts the way he does. They had SO many questions and Jack was a superstar! The kids have totally changed the way that they see Jack and he is happier now then he has been in a long time. Now when he has a meltdown or a problem, they understand what is going on. I am planning to visit more classes and speak at church, as well.

 

[Hasil72]

We haven't tried scouting but I am looking into karate. Here's a question...do I tell them when I inquire that DS has issues?

Last year, DS's teacher did something similar to what Karynnix did. They have "morning meeting" each day and one am when DS was in the hall pulling himself together after a minor meltdown, she explained that DS was different (after getting my permission) and they should all help and be understanding, etc. It worked wonders. They made sure to move a core group of students with him to second grade (and provide a PT aide) and it has really helped. Most are very supportive. Sometimes, they can even spot a meltdown coming before anyone else realizes it and they try to diffuse the situation.

 

[pcparamedics01]

We haven't tried scouting but I am looking into karate. Here's a question...do I tell them when I inquire that DS has issues?

Hi Hasil72! I would tell them. I did it works out great!!! He has been going to Karate for 2+ years now. He does great! They know exactly how to handle any issues and DS loves them!

 

[meriann]

My ds has been a scout since 2nd grade and LOVES it. We have always from teh start told his leaders about him and what works for him and what doesen't. We do this the first week of school also.

I have approached the teachers about talking to the class ect... but so far they haven't wanted to do that. I am not thrilled about that but until there is a real issue with classmates I won't push it.

I am lucky with ds, he is very high functining and does SOO much better at school than he does at home. He loves the structure and thrives.

We got a trampoline for home and that has made a WORLD of difference. He has a tic disorder also and the jumping helps to calm him and has lessend the tic's and stimming.

 

[pcparamedics01]

We got a trampoline for home and that has made a WORLD of difference. He has a tic disorder also and the jumping helps to calm him and has lessend the tic's and stimming.

My son loves the trampoline and is quite good! He can do double flips backflips! It helps him sooo much with a lot of things! Great investment!!

 

[missypie]

With respect to scouting, please observe the troop/den carefully. DS16 has Asperger's...his is mild but he has a friend in the troop who is a lot more severe. His dad went on all of the camp outs until this year because the kids were not very tolerant. In general, the troop members are pretty mean to kids with differences, and those in charge don't seem to care. But we've stayed with it, because DS has two close friends in the Troop (the other Aspie and one other boy) who started with him in 6th grade and as we know, friends are at a premium! My son is just a project away from Eagle (due to ME MAKING HIM DO STUFF!!!) but the other Aspie is a 16 year old First Class scout.

With that said, some boys at church are in a troop with a Down Syndrome boy, and that troop is awesome to him!

So, just choose your troop carefully.

 

[missypie]

With respect to the parents getting involved in making play dates happen....you can do that, but it won't make the other kids like your child. That is what is so heartbreaking.

What finally made us take DS to be tested was that in 4th grade, he was in a classroom with some really nice boys. We knew them. We knew their parents. But our son still had no one to play with at recess. We knew that we couldn't blame his friendless state on the other kids being mean, becuase that wasn't true. We had to face the reality that it was HIM, not THEM.

Things were better in middle school and even better in high school, just because the school population is so large. But I'm starting to be heartbroken again, because DS's friends are all Seniors and he is Junior....so sad to think of him having a friendless Senior year.

And DS is starting to notice that other kids his age...even his "friends" at school...have a much richer social life than he does. They make plans with each other over the weekend. DS isn't included at that level. I've started avoiding certain restaurants on weekends, because we'll see groups of kids that he knows, and he obviously isn't in the group. It makes a mama sad.

 

[packetminnie]

With respect to scouting, please observe the troop/den carefully.

We checked out 2 other packs before joining. As with most everything the people make all the difference.

We chose scouting over karate because of the social aspect of scouting that we didn't see in karate. Also the one karate instructor we tried (after explaining about DS) had no patience with him. He was the recommended instructor for ADHD kids.

 

[pcparamedics01]

We checked out 2 other packs before joining. As with most everything the people make all the difference.

We chose scouting over karate because of the social aspect of scouting that we didn't see in karate. Also the one karate instructor we tried (after explaining about DS) had no patience with him. He was the recommended instructor for ADHD kids.

I think every karate Dojo is very different! Ours is fabulous... He works with my DS so hard and watches out for him. I have had him in there for 2 + years now. He has broken boards. Ultimately, I want him to defend himself because he is ASD. For my son does not have a mean bone in his body! I worry he will take the abuse and be abused!!!

 

[Dis1978]

We have had such sadness and stress over these last couple of years because of aspergers. Our son's descent into severe depression as a result of being bullied at school has been so hard to cope with. His anxiety and desperate unhapppiness has been heartbreaking for all of us. However, we have had wonderful help from many people. The ABA therapists in particular have provided the most amazing help. Only a few months ago I thought my son would never ben able to return to school, yet thanks to ABA he is in a new school, working hard and amazingly spends his free time going out with his new friends! Yes, It has cost us a fortune but it is worth it because it has saved our son.

 

[BethanyF]

Hi. My DS 10 was diagnosed today with Asperer's. He has ADHD,ASD and a visual processing disorder. One of the things the dr said we were doing that she definitely wanted him to continue is cub scouts. Have any of you tried scouting?

YES!! my DS has been a Cub Scout since first grade (now in 4th) and it's mostly great. Granted, Im the Den leader and can control some of the situation. I love that Scouting gives him a chance to socialize and do fun things with other kids his age. Sporting events, camping, laser tag, bowling, and a lot more.
Most of the kids in our Pack are very tolerant of differences. We've had CP, autism, aspergers, ADHD and a lot more. None of the adults involved will put up with any kind of teasing of the kids that are 'different'
He does have occassional meltdowns because of homework and Scouts on the same night. He is working through that though.

 

[Kaler131]

My DS10 is also a cub scout (Weeblo 2) and he LOVES it! He doesn't have any problems with the other boys in the den because they have all been together since 1st grade (Tiger Cubs).

 

[tweedlemom]

Subscribing...sending in my son's paperwork tomorrow to begin his Comprehensive Autism Eval. This thread helps me see a light at the end of the tunnel. Thanks...

 

[Hasil72]

I think every karate Dojo is very different! Ours is fabulous... He works with my DS so hard and watches out for him. I have had him in there for 2 + years now. He has broken boards. Ultimately, I want him to defend himself because he is ASD. For my son does not have a mean bone in his body! I worry he will take the abuse and be abused!!!

Finally, we found a karate instructor who didn't flip out when I said autism spectrum! We meet with him on Monday. I can't wait. I'm really hoping it works out. DS would be so excited!

 

[pcparamedics01]

Finally, we found a karate instructor who didn't flip out when I said autism spectrum! We meet with him on Monday. I can't wait. I'm really hoping it works out. DS would be so excited!

That is wonderful Hasil!!!! Let me know how it goes.

 

[onesadduck]

Just need to vent- I hope this is okay here.

Erg. I went to Target today with my mom. I should preface with the fact that even though my psychiatrist recently said I have high-functioning Asperger's (she says if I have to practice my facial expressions- something is wrong besides depression), my mom doesn't believe I do. Well first we went to the library and then target. It was crowded and noisy. I can take a little of that, but I wanted to get in, get what was on the list and leave. Well, my mom kept adding things to the list as we went along. And she's a slow shopper, she has to contemplate everything!

We were in both toys and electronics which must have been the loudest and most crowded sections. After about twenty minutes I told my mom I had to leave. It was too much. There were people in every aisle and noise coming from babies crying, kids running around, mothers yelling at those kids, teenagers laughing very loudly, multiple electronics displays making noise and playing video and many other things going on at once. My mom refused to leave. She had more things to do. I told her I needed to leave, it was too much. She kept saying, "okay just one more thing," but there were always more things she remembered. Even after she finished in electronics, she stayed another few minutes asking me if there was anything I wanted. I wanted to go home. We didn't leave until twenty minutes after I said I had to, and I was already practically crying. We walked there so we had to walk home. It was still very loud outside. I had a meltdown on the street. No one was around but it's still embarrassing. I tried very hard not to. I wanted to keep it together until home, but I couldn't.

She asked me how I handle shopping on my own (I go to school 350 miles from home). My answer: I go when I think it won't be crowded. At night on a school night or during the weekday midday. I usually don't go down an aisle if someone else is in it already. I didn't have that choice today- there were people everywhere! But most of all, when I'm on my own and I need to leave, I LEAVE. I don't hold myself there another twenty minutes waiting and speculating about merchandise.

When I got home I had to spend a lot of time in my room talking to no one just in silence. I know, I'm twenty years old, I should be better about this by now. But this was too much. She still thinks I'm overreacting or being over dramatic.

 

[karynnix]

When I got home I had to spend a lot of time in my room talking to no one just in silence. I know, I'm twenty years old, I should be better about this by now. But this was too much. She still thinks I'm overreacting or being over dramatic.

Sweetie, there is no cure for Asperger's. You can try to control the characteristics, but they are still going to be there. They are a part of your wonderful personality. You seem to have a handle on managing it on your own. Good for you! I do the same with my son (going when it won't be busy). He seems to do better then.

I just noticed your signature...I'll be thinking of you during the holidays. Stay strong and know that you are not alone. Asperger's can be so hard to deal with, but you are unique and wonderful because of it. Keep your chin up. Take breaks when you need them, and vent all you want. That's what we are here for!

 

[karynnix]

We have had such sadness and stress over these last couple of years because of aspergers. Our son's descent into severe depression as a result of being bullied at school has been so hard to cope with. His anxiety and desperate unhapppiness has been heartbreaking for all of us. However, we have had wonderful help from many people. The ABA therapists in particular have provided the most amazing help. Only a few months ago I thought my son would never ben able to return to school, yet thanks to ABA he is in a new school, working hard and amazingly spends his free time going out with his new friends! Yes, It has cost us a fortune but it is worth it because it has saved our son.

I have been to the bottom and clawed my way back up again. I stopped the bullying by educating the entire 4th grade about Asperger's! It was so bad for a while, but my son has come through it with flying colors. ABA is amazing. My son is on a reward system created for ABA at school. When he has to be redirected by his aide, he gets a prompt (just a checkmark on his daily paper). He can get up to 12 prompts a day. If he stays below his prompts, he gets a treat at the end of the week. That was our lifesaver. It sounds like everything is on an upswing for you! The cost involved doesn't matter so much when you see that smile from your kid!

 

[mousescrapper]

OK HFA/Aspie parents can anyone throw some advice my way?

DS is in mainstreamed second grade (with a PT one-on-one aide) and currently dx'd with HFA/Asperger's, ADHD, SID/SPD (call it what you wish), and mild anxiety. While we are making progress, and by progress I mean not locking himself in the bathroom or hiding under a desk after he has acted impulsively, I am failing to make the right choices for behavior modification.


I know how you feel. It's like trying to re-parent your child, learning a whole new way of dealing with things. Don't feel like your failing, believe me I do to, but then I need to remember it's no one's fault sometime's not even DS's...keep your chin up, vent, cry, sceam, if you have to....

If I try to use an incentive or prize, it backfires. If he makes a mistake during the school day, the rest of the day is a wash because he is so upset that he will not have earned the reward. And I don't want him to expect a prize for everything either. Yet, if I try taking things away, that hasn't worked well either.

We don't do prizes everyday but DS earns "chore points" for doing a 2 step/day chore same thing every week (garbage cans), homework, etc. He gets 1 point per thing during the week, he collects the points in a cup. Then anytime he wants a reward such as tv time, computer time, etc he has to "cash" in a specific designated amount of points to do that, of course though it has to be OK by parent and a suitable time (we sometimes struggle with this part) It's not fail proof, but it helps control outbursts of failed expectations of rewards/prizes. It's working for us....you can use the points for any responisiblity or even behavior you want to reward, and of course our DS loses points for opposite behavior.

For example, I got a call today from the Principal. Apparently at recess, DS wanted to play ball with the other boys. So after sitting and watching them, he joined in on defense and proceeded to hit one boy and punch another as he went for the ball. When questioned why he did it he replied, "I was just doing what the other kids were doing." Luckily, the Principal has been an advocate for DS and explained to me that she knew he had no ill intent but that he had "detention" today for making a poor choice and he was instructed to tell me when he gets home. Now, I don't know if it's the Asperger's or how he was raised, but DS just cannot lie so I know he will come home and tell me and be all upset that he didn't reach his goal of the day. Do I give a little reward for telling the truth as his teachers suggest or do nothing?

I'm sorry that happend to your DS during recess, it's a shame he recieved a "detention" for something that looks like a poor social judgement in a game...my DS struggles the hardest each day during the lunch/recess hour...to abstrct, to unstructered. It is hard to advocate for your child in school and fit in the "rules" of school when they don't always work for an Aspie child...that is a hard choice to reward or not reward with something tangible.


I know that he can't prevent all the things he does so where do I draw the line between holding him accountable and what he can't control? It has been a source of great debate between DH and I.

I hear you big-time, we struggle with the same thing, sometimes on a daily basis. I can't give any huge words of wisdom, but just encouragement you are not alone here. Try and talk with DH when things are not going chaotic and try hard to set some base lines that both of you can follow and then try and explain these things to DS when he is not having a "melt-down". One thing I've learned, not that I always remember is in the melt down moment, my DS can not respond to reason...our Dr. says to always deal with disclipline for these and other moments with a pure mono tone fact of matter voice. It's hard, but sometimes I leave, settle myself and then go back and try with him...good luck there.

Any words of wisdom?

My ds has been a scout since 2nd grade and LOVES it. We have always from teh start told his leaders about him and what works for him and what doesen't. We do this the first week of school also.

I have approached the teachers about talking to the class ect... but so far they haven't wanted to do that. I am not thrilled about that but until there is a real issue with classmates I won't push it.

I am lucky with ds, he is very high functining and does SOO much better at school than he does at home. He loves the structure and thrives.

SO GLAD to hear someone say the same that I deal with practically on a daily basis. My DS is the same, usually great at school, but completely falls about when he gets home, homewrok is a nightmare most nights. I dread the 2 weeks off for Holiday break, just the other day, he was completely thrown for a loop when told to get started on homewrok and it was dark outside already....sometimes it really is hard.

We got a trampoline for home and that has made a WORLD of difference. He has a tic disorder also and the jumping helps to calm him and has lessend the tic's and stimming.

meriann, I would just love to read your PTR for your trip, outr time lines look practically identical. I tried accessing your PTR from the link, but it wouldn't put me through. come over by mine if you can or pm with your actual title so I can find it.

This will be our 2nd time to WDW with kids, but first since DS was diagonsed with AS and ADHD. It's starting to make me nervous. He is excited to go and reads a treasure/hidden mickey book and can't wait to look for that stuff and has his top fav things to see and do when we are there, but DS really is a sensory avioder, not the best place to be....i don't know. But there's no turning back now. Be curious if you have gone there before with your DS and what tips, etc you may have to offer or really just to read your story.

Thanks,

I havn't visited this thread in awhile, but hope my thoughts help or at least just enourage you both or someone else reading...