Someone please help me help my son!

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Hello to all!

First of all, let me say that I am thrilled to find a website devoted to people who have Asperger's! I feel so completely lost in this world with my son, it's nice to know that I have a place I can come to that someone else will understand.

My son, who just turned 14 in August, was diagnosed with Asperger's in May of this year. All of his life he has struggled, and the doctors kept telling me it was ADD with an axiety disorder. I knew it was something more, and I tried to tell them, tried to tell them if it were that simple then the meds they had him on would help, would do something, but they didn't, and so the doctors thought they knew more than I did. Finally, this past year, my son was put on state aid for his disability, and we had to see a new doctor. I was not happy about that, as I had seen numerous doctors and played the medicine game, before completely pulling him off the meds at the end of six grade. (He is now in 8th). I did not want this doctor to put him back on meds, because they don't help. I told him that you can't tell the difference of when he is off the meds compared to when he is on them, except for the fact that he was even more withdrawn and closed off from the world than normal. This doctor's wife worked with children who have autism/asperger's, and he knew the first time he saw my son that it was more than just ADD. He sent my son to be evalutated, and sure enough, it turned out he has asperger's.

I don't know much about it. I've skimmed through a ton of books at the book store, trying to find the best one to read, but there are so many, and they cover such a big scope, that I don't know which one to get.

Now, about my son. He has always struggled with school, barely passing and sometimes I'm even suprised he did pass. I think a couple of teachers passed him to the next grade just so they didn't have to deal with him anymore. He is very slow, does not finish his classwork, looses EVERYTHING (books, assignments, pencils, etc.) and is so disorganized it gives new meaning to the word. He takes from the time he gets home from school until he goes to bed and even sometimes later to get his homework done, and sometimes it gets so late that there is no time to finish it. It doesn't matter if it's one paper to do, or if he has alot of assignments. He sits there and stares out into space, and does not stay on task most of the time. He does have an IEP, and he is in the wrap around services, where he has a TSS at school with him 15 hrs a week, and a Behavorial Therapist with him four hours a week at school. The TSS is here an additional 5 hours a week with him at home. She says his locker at school is a nightmare. He opens it and everything falls out of it. Luckily he has a locker on the bottom, so nothing is falling out over anyone else. He is extremely slow, extremely, and looks like he's in another world 90 percent of the time. He seems to have a hard time trying to focus in this world, but then his TSS told me that when he is in class, it looks like he's not paying attention, but his teacher will call on him and he will answer the question, other times he won't know what is going on around him, and it is hard to distguinish between the two. He doesn't make eye contact with anyone, does not like to be touched, and when his TSS tries to redirect him, he gets very angry and irrated with her. Oneday she was here and was trying to help him, and he told her to shut up. When he gets mad, he does things to himself, ie scratching himself up on the arms and face, digging his nails into his palms when he tries to hide it, and so on.

I have tried everything I know possible to help him. He has a binder with different colored folders so he knows which folder belongs to which class, his binder zips up so he doesn't lose papers, it has pockets for his calculator and pencils and erasers and things to go in, and he has a backpack that has only one opening so it is easier for him to know where his things are so he can get to them more easily. None of this helps. He still forgets to bring home assignments most of the time, forgets books, homework sheets, etc. He is still so disorganized he doesn't know which way to turn. Short of going to school and doing it for him, I don't know what to do. We have another IEP meeting with the school on the 29th of this month, and his TSS and Behavorial Therapist will be there, but they keep coming to me asking me what they can do to help him, and I am at a loss because I don't know. Any suggestions would be greatly appreciated, as I want my son to be able to focus and enjoy school and friends, instead of hating it so much that he doesn't even want to try anymore.

I could go on and on about my son's behavior in school, but I won't. I'll just say that he has been picked on and made fun of most of his life, and now he has a kind of "class clown" attitude. I think he's trying to pull attention away from the fact that he has so many problems, and makes fun of himself, so he doesn't have to hear anymore taunts from his peers. So if anyone could shed some light on that for me, I'd appreciate it to. I don't want him to get into the habit of making fun of himself and putting himself down to others, but I don't know how to stop it either.

Thank you so much for taking the time to read this. I know it is incredibly long, but I need help and had to get this off my chest because I have been carrying it around for years. I knew it was more than ADD, and when we got the diagnosis, part of me was relieved because we finally had an answer, but the other part of me was devasted because he'll always have to struggle with life, unless we find a way to make it easier for him now.

Rowan Moon Wynd - first of all, your son has you, and it's so obvious you love him to bits and want to do what's best for him. that is such a great asset for him.

there are many parents on here who may have suggestions for you (i'm not one, unfortunately). even if people here can't help you (which i doubt - they're an amazing bunch), then i hope you can find some support here for yourself.

welcome to WP, and the very best of luck.

Vivi
(as Mod)

Thank you Vivi! Yes! I do love him to pieces, and only want him to be able to function in this world and take care of himself, because I am not always going to be here to do it for him, though I wished I could!

Purchase an assignment notebook that has be be filled out by him, but must be initialed by each teacher when the assignment is filled in (and put in a requirement in the IEP that if there is no HW, he must fill in None and the teacher still must initial it). When he gets home, you initial that you saw the HW book and that he was prepared to complete the HW. It still puts the responsibility to get homework done on him but if something is missing, either you or the teacher will catch it.

Have you had your son tested for giftedness? I know because of his grades, it may not seem that it would be an issue. I was the same way as your son. What I mean is that I had barely passing grades, I would hurt myself when frustrated and angry (still do ) and I would withdraw into my own world and day dream.

The thing is that now I am know I am gifted and it tells me a lot about my schooling. I thought school was utterly boring. If I am interested in a subject, I will be engaged and will get A's. If I am not interested in a subject, my brain tells me that my teacher is the enemy and they are stupid, so my grades drop and I become severely withdrawn. Don't ask me why this happens.

I am hopelessly disorganized and really have had to force myself my whole life, so far, to put things in the same place every time, or I will lose said thing.

Here is a good website for you: www.gifteddevelopment.com

I would get in contact with the people at that center, who are located in Denver, and see if they can help you get the appropriate evaluations. They will be able to help you figure out your son's learning strengths and learning weaknesses. I suspect he is a visual-spatial learner. Unfortunately, school today is geared toward auditory-sequential learners.

I am the absent-minded professor, but without the PhD.

Take heart though...I am dxd with AS and ADD, but I have a BA, have attended law school and I have a house, a husband and a one year old daughter...not bad for high school drop out.

Please let me what you find out.

I am glad to see that you are taking an active role in your son's life. He may not show you that he is aware of what you feel for him in terms of worry, etc., but he is aware and is internalizing every thing he sees. He internalizes every look from other students, teachers and evaluators. He knows that people are frustrated with him and he knows that he himself is frustrated at his disorganization.

Here is another good website: depts.washington.edu/cscy/ (no www) Incidentally, I met Nancy Robinson through another research program and she is very kind.

Tallgirl.

Hi,

I'm in full agreement with everything above. I have two sons with autism and it is clear to me that I have AS (although at my age (56) and position in life, it makes no sense to seek a diagnosis).

Yes, your son is going to need all of the visual structure you can give him to get better organized. When something bores him, he is going to have a very hard time concentrating on it anyway. On the other hand, I'll bet that there are things he could study or read about all day. Right?

He sounds an awful lot like me at his age, right down to the bullying and class clown thing. Sometimes I still think I fall into being the class clown.

But, the good news is that, like TallGirl, I've done pretty well. An MA, I'm a tenured, senior faculty member at a community college, I have a wonderfully patient wife of 23 years, two sons, and a nice house in the suburbs.

Not everyone here is in that position. It definitely puts me in as an outlier, but you certainly should be open to all of the possibilities of what your son might be and do, while accepting his limitations.

It is clear to me, as to everyone else, that you love him very much.

It's also clear that you are intelligently seeking the best approaches for him.

We're here. I am confident that you guys will do great.

WoW! Thank you all for your responses! I never thought about having him tested for giftedness! It just didn't seem like that was him. His BT wants an IQ test done on him. We have tried the assignment book. The school made one up for him, where he was supposed to write down his assignments and have the teacher initial it, and he did, and they did, but he still forgot to bring his homework home at the end of the day, and sometimes there was no homework or teacher initials and I asked him why, and he said there was no time to do it at the end of the class. So I suggested that he write it down sometime during class, and he said his teachers didn't give him his homework assignments until the end of class. It's hard getting all his different teachers to be on the same wavelenght. Sometimes I wonder if he should be mainstreamed with the rest of the students, or if he would be better off in one classroom all day. He doesn't want that to happen because he doesn't want to be made fun of. I told him about this website, and about some of the replies I have gotten from you, and he was so excited to know that he's not alone, and I think it gave him some hope that he can make it in this world. He was astonished to hear that two of you have established careers, even though you had a hard time in school like he does. I think I'm going to let him join, and start posting here. I think it would help alot. I do know when it comes to something he is interested in (mostly video games, it's ALL he talks about) he can focus intently on it. He said he wants to be a video game designer, but I told him he still needs the education to back it up.

Thank you again for all your wonderful support and replies and advice!! I wished you knew how much it means to have someone reach out! I have so much to learn, sometimes I feel so overwhelmed!!

Rowan ~

Rowan, would it be possible if you talked personally with the teachers, like in a parent-teacher conference kind of thing? I know that's helped me a lot in school in the past.

You also said he was interested in video games. This might sound like pointing out the obvious, but why not try to link his homework assignments to video games? If he's struggling to get his homework done on time, give him a reward of letting him play his games for a certain amount of time after he does a certain amount of work. It seems like many people who do video game design go into both computers courses and graphic design. Maybe he would be interested in exploring something like that in a summer class or program.

I had an assignment book like that a few years ago. It seemed to help a little bit, but everyone's different. Maybe as an extra part of the assignment book, the teacher should initial that he wrote down his homework and that his homework is in his binder. Also, when teachers write the homework on the board (either a chalkboard or a whiteboard), this helps many students. Perhaps ask the teachers if they would be willing to hand out a weekly assignment sheet at the beginning of their classes on Monday. Then your son would be able to expect what is coming for the rest of the week and you can help him prepare accordingly.

You also said he tends to put himself down. If you (and his teachers) keep reinforcing the positive things about him to him, and accept him for the way he is (both the good and the bad), this might help.

Also, be sure to let your son know that it does not necessarily matter how well you do in school. You can still be a success in life if you do poorly in school and vice versa. He is very fortunate to have someone like you who genuinely cares about him.

Rowan~
this is the first time i'm posting here, but i felt it was important that i shared with you some of the things that have been suggested for helping my son & hubby who both are on the spectrum.
the story of them is very long, and i won't go into it now. suffice it to say that the road has been a difficult one. i have struggled greatly to get doctors and school staff to listen. it is incredibly frustrating to know in your heart that there is something awry, and yet no one will listen.
have you tried weighted blankets or vests ? how about an OT consult for sensory integration issues ? does your son have a private therapist ? what about a hemi-sync cd ? cocooning ? partial sensory deprivation ?
keep up the good work ! if you want me to elaborate more on any of these suggestions, let me know.

Hi Rowan,
This is my first post on this site.
My son Bryce is only 6 1/2 years old, but very lucky to be here today. He had a rare leukaemia as a 19 month old baby, fungal meningitis at 20 months (from chemo effects) a Bone Marrow Transplant at 26 months. Having a diagnosis of Asperger’s Syndrome was a relief in some ways. He has managed 8 months of school, mostly successfully, with help from a wonderful integration aide.

I don't claim to be an expert in ASD(!), however, my ideas, in no particular order:

I wonder if your son's teachers would be willing to eMail homework to you...
A psychologist with Asperger's expertise would help, I couldn't tell if you'd already gone down that path;
I read some school tips in an Australian website recently, suggesting:
A photo of an organised school bag
A photo of an organised locker
Tie a pen/pencil to workbook/s
A great resource for me is the www.autismhelp.info
If you can find anything by Sue Larkey, an Australian mainstream school teacher/autistic school teacher/author/presenter, I would highly recommend it.
Any books or DVDs by professor Tony Attwood are brilliant.
Joining our local Asperger's Syndrome Support Network has helped me with parent networking, getting our kids together, throwing around ideas, borrowing books, seminar details, guest speakers and lots more!

If school becomes impossible for your son, would you consider homeschooling? At a seminar recently held in Melbourne, Australia, Tony Attwood said "It's not what you achieve, it's what you prevent."

Hi, I'm new here too but many of your son's issues sound just like my twins'-- they're now in 9th grade but 8th was miserable... so far, this year, things are ok... fingers crossed!
Right now I'd say avoid putting too much responsibility on his shoulders... the agenda stuff rarely worked for us, and now I have about 5 different systems between all the teachers so that I can know the assignments. Some have a voice-mail, some email to me, one has a website... I know it sounds crazy but if they can at least DO the assignment, I can be the one to make sure they know they have one. Often they do know, but unless I have confirmation I was never sure if they were correct if they said they didn't have any! (Hope that makes sense!) Last year they were so busy confronting so many different issues that it made sense to help out where I could. I know there are issues out there about the "overprotective parent" but I just don't believe it... we do what we have to do. And if you look at him at a social-developement age instead of a chronological age, you'll see that it's not your sons' abilities that have changed, it's others' expectations. He didn't have trouble with homework assignments in his early grades because the teacher probably sent home an assignment sheet (and if you were lucky, it was for the whole week!).

My boys also seem to have one speed.... slow.... Last year (when they first got thier dx too, same as you, until then it was always ADHD, depression, anxiety) we began working with an OT which seemed to help. Their handwriting was always atrocious but I hadn't thought about it in terms of how DIFFICULT it is for them. They don't even see how much more effort it takes them than their peers, but imagine if handwriting alone were enough to exhaust you... you wouldn't be taking copious notes either! Also, the challenges of reading from the board, then looking to the paper, remembering what to write, etc. I saw a great description of this somewhere and it was really eye-opening to see the struggles related to something we consider so simple. Ask the teacher to give him a copy of anything she's working from (transparencies, etc.) so he doesn't have to start note-taking from scratch, but can expand on her outline. Or some folks have had success just getting copies of another student's notes. Reduced workload is good too. If the teacher can tell he knows something in 1/2 the work, why make him do it all? Some of these may or may not apply also depending on the results of your gifted/IQ tests, I'm glad someone made that suggestion b/c he could be so far beyond his teachers altogether. I could go on and on....

As for him feeling alone, there are a couple of books, both quick reads that he might find helpful. One is "Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence" and another is "Asperger's Syndrome, The Universe and Everything: Kenneth's Book"-- both are written BY boys with Aspergers'... the second is a bit younger than the first. I think my boys felt quite empowered after reading these.

Good luck! Florence

Rowan,
Welcome. I have a young son with AS and a daughter we thought was NT. As I read what you are going through I have tears in my eyes because today I started to watch my daughter go down that road. I believe I also have AS because I experianced all these issues myself.

As a mother I can only say keep loving him and trying to help him while letting him participate in the decisions made regarding him.

As an adult that most likely has AS I can only say I join Litguy and Tallgirl in saying I am able to hold down a job and live away from my parents. I do have a husband and friend that help me out with the areas I have trouble with and I have a great group of coworkers who also offer support. My greatest moment came when I found out others shared my struggles and that I am not alone or completely abnormal.

Good luck and cheers for what you are trying to do for/with your son,

Y

My cousin's boyfriend is a freelance video game designer. We used to give him a hard time, because all he did was play video games and he was over 30 years old! He then went to our local art institute and received a degree I believe in graphic design and other computer related things. He is very good at what he does and loves it.

I also used to work at Microsoft and I met many game designers while working there. They have very cool jobs and we all know that Microsoft is a hotbed of Aspies, ADDs, OCDs, etc. The environment was perfect for those people. Your work is project-based, so you may set your own schedule, decorate your office to your individual needs and tastes, and they are very supportive of uniqueness.

Is there some way you can find a mentor for your son? It might be worth a call to Microsoft, the game design department, to see if anyone would be interested in mentoring your son online. Microsoft emphasizes community service, so I would think someone would love to take your young guy under their wings. It might also create an incentive for your son to get his work done and stay organized.

With giftedness and even just AS comes a lack of motivation without a clear goal and incentive. I know that I perform in a stellar manner when I want something and must work to get it, i.e. law school.

You could use his video game playing time as an incentive to work differently in school, although I would think your teachers would need to be in on the plan and willing to work with you.

Tallgirl.

I just finished a Bachelor's in Computer Art and I'm trying to break into the video game industry. I remember I absolutely loved it in school whenever an assignment was even remotely related to video games. In a high school programming class, one project was to write a simple Asteroids game. In middle school we had HyperCard installed in the computer lab, and we could do multimedia presentations of our research projects (with mini-games coded into them). If he ever has write a social issues paper for english class, he could do something for or against violence in video games. I think making schoolwork relevant can make all the difference in the world - and like Namiko said, there are lots of summer camps for video game design.

Has your son ever thought about joining a video game mod team? If he's interested in the art side, GMax is a free 3d program that can be used to design props and custom levels for some games. If he's into coding, many game engines have a scripting language (like in the Neverwinter Nights Aurora engine).

Hope this gives you some ideas, my son is much younger. Kids with AS somtimes do have trouble staying on task if what they are being asked to do doesn't interest them. My son's aid has a chart with her at all times that lists things that he is expected to accomplish during each assignment period. Remeber my son is only in grade two. These things include Hands to self, completeing assignment, staying in his desk, and answering correctly(this one is easy for him and something we know he can accomplish every time) Right now she marks the chart every 15 minutes indicating that he has reached his goals and if he accomplishes 70% he gets a reward at the end of the day. Eventually they will just refer to the chart twice a day as he becomes more accomplished at completing these tasks. Regarding his oraganization problems, if he has just been diagnosed he does need someone to help him get his assignments home. It is just a part of AS and not because he's slacking. I would start to get him a break at the IEP meeting by requesting that his homework load be cut in half as long as he demonstrates mastery of the subject matter. Instead of my son diagraming 20 sentences we do five written and the other five he dicatates to me. He also needs to be allowed to take time away from class when he is feeling overwhelmed. He probably struck out at his aid because as my son says his brain was about to explode. Try to read some Jerry Neweport or (sP) Liane W sorry can't remeber the spelling. They are adults with AS who write eloquantely about what it is like to have AS. These writing have been a great help to me as a NT parent to undertstand what my son needs to be sucessful.

Thank you all for your wonderful ideas. I have pen and paper ready, and am going to that IEP meeting tomorrow loaded with information and prepared to MAKE them do what needs to be done for my son. I'll let everyone know how it turns out.

I do want to bring one other thing up though. I have suspicions that my son may start to take advantage of having AS and using that as an excuse to explain away some of the problems he is having that he can do something about. He has so many people trying to help him right now, mysef, my husband, his teachers, TSS, BT, but he is not doing anything to try and help himself, or so that is what I am seeing. Is it that he is not trying and just doesn't care, or just not capable of doing it and I am expecting more out of him right now than he is capable of doing? All of this has been a real eye opener for me. Thank you so very much for your time to reply. I never thought that looking at him from his cronological age would make a difference. Wow, what a realy eye opener that was. ((this quote really opened my eyes "And if you look at him at a social-developement age instead of a chronological age, you'll see that it's not your sons' abilities that have changed, it's others' expectations. He didn't have trouble with homework assignments in his early grades because the teacher probably sent home an assignment sheet (and if you were lucky, it was for the whole week!)."))

I cannot give enough THANK YOU'S to all of you. God Bless you and best of luck with your children and in your lives!

Oh, and on another note, my son did join this site. His screenname is Covenant and he made a hi thread in the introduce yourself forum, or rather, I helped him. We have to fix his AV, but some wonderful people on there have made that easy for us!

I LOVE THIS PLACE!

Rowan ~