? about Asperger's syndrome after evaluation

[stampin_fool]

It sounds to me like you had some wonderful family support growing up helping to make sure that your needs were met! It is wonderful to hear that you graduated from a great university. I don't want to sound rude or insensitive but do had a couple of questions. Please feel free to not answer if it makes you uncomfortable. I only ask because I am curious about how my son may due in the future. We accommodations made for you at college? If so were they willing to work with you and did you advocate for your self for did you have help from your parents? My son is getting older and I am curious how things will work for college as he would like to go to college for either veterinarian medicine or for oceanographer so he can work with animals at either Disney or Sea World. He has big plans.

Any info you would feel comfortable sharing would be much appreciated! Thanks

Ronda

I just had to jump in here. This is one thing that makes me laugh very hard. I have Asperger's, and as an adult still hold my pencil incorrectly. My first memories of school are of panicked teachers, for at least two years, trying to correct my pencil grip. My mom finally saw how much it frustrated me and said I could hold it however I darn well pleased.

My handwriting is neat. I graduated from a great university. The only problem it ever created was to create a weird callous. There are pencil protectors that even eliminate those!

My point being, schools focus on some things that just don't matter. All of your kids are lucky to have parents on their sides for the things that DO matter.

Also, my lack of tumbling prowess was treated as an urgent need on par with the inability to talk. I am proud to say that I have never tumbled, and do not feel that my life has been incomplete without it.

 

[blurrycat]

It sounds to me like you had some wonderful family support growing up helping to make sure that your needs were met! It is wonderful to hear that you graduated from a great university. I don't want to sound rude or insensitive but do had a couple of questions. Please feel free to not answer if it makes you uncomfortable. I only ask because I am curious about how my son may due in the future. We accommodations made for you at college? If so were they willing to work with you and did you advocate for your self for did you have help from your parents? My son is getting older and I am curious how things will work for college as he would like to go to college for either veterinarian medicine or for oceanographer so he can work with animals at either Disney or Sea World. He has big plans.

Any info you would feel comfortable sharing would be much appreciated! Thanks

Ronda

I don't mind sharing at all. I'm glad to help whenever I can.

My mother was a wonderful advocate for me growing up. I can tell you will be the same for your son. Coincidentally, we share the same name! It sounds like your son is going to be a great asset to the world. I share his love of animals, and do animal rescue and rehab. I suppose we aspies have more in common than trains sometimes! (That is a joke I share with my wife. She is amused by the train fascination.)

Anyway, to answer your questions. I went to Duke on an academic scholarship. They did have an academic workshop my freshman year that helped those of us with processing disorders learn some tricks for college. The most invaluable thing was taking a tape recorder. I would then transcribe the important parts of the lecture. It would take a few times through to get it all, but by the time I had written it out studying was almost unnecessary! There are also tutors and academic labs. My mother would have advocated as needed, but honestly, once they were aware of the problem, everyone was more than willing to help. It is infinitely easier to function in higher education as an aspie than it is in the public schools. I think it is because there are so many more of us there. In fact, a good many of the professors are probably on the spectrum somewhere.

The most difficult parts of my schooling were the first two years of elementary, all of middle, and my freshman year of high school. They are way less willing to make accomodations there, as I am sure you have seen already. Luckily, I found that the older I got the better my coping skills became, but it certainly didn't happen overnight.

I'm married now, my wife and I have infant twins, and I can say without a doubt I wouldn't be here without my mother. I can't say this enough: It's so easy to feel alone, different, and depressed about it all. It feels like the world will never accept who you are as a kid. Having someone who loves you and doesn't try to change you (helping to learn to cope is different from change) makes all of the difference.

 

[disneycruising]

I also have a DD (16) with asperger's. She did not find our she had until she was 12 or 13. I wish we would have been able to get her help sooner.

My DD's asperger affects: her pencil grip is horrible, she has very few friends, she does not understand when someone is joking, she doesn't read social clues or facial expressions... You can be mad a h*** and she doesn't see it, she is always in a hurry, she can not see someone elses point of view, she is very controlling, very scheduled and she doesn't talk with much expression.

We have had a terrible time with the school. We asked the school to test her in 5th grade... They said they didn't find anything. So we took her outside of the school system. (Where she was dignoised with Asperger, ADD and Anxiety. She was put on medications for the ADD and anxiety.) She was retested in 6 grade and they still say she doen't qualify for any services...no IEP. Last year we finally got a 504 for her.

If I were to give you any advise: it would be to find someone to attend the meetings with you, that understand the system. There are people you can hire to go with you. You do not want to try and navigate this alone. The school is counting on you to be clueless... I wish I would have done this. Maybe we would not have wasted so many years.

 

[bookwormde]

I could not agree more with Mouse Maineac’s last statement. It is essential that you and the IEP team search out and understand the child’s needs and focus on that initially (a lot of team identify 1 need and then work on how to help with that instead of completing a needs list first) and then creating accommodations modification and supports and since so many of the characteristics that generate the needs a interrelated as are good programs to meet the needs.

That is why my approach with parents initially is to talk about needs without even discussing the things that might help.

Not saying that the individualized goals are not essential, but doing the process in the proper order makes amazing difference in the outcome and effectivness.

bookwormde

 

[DVCisME]

Can I, legally, ask if they have ever dealt with someone with Asperger's? If the haven't can I ask they we ask for help from an outside source?
Though I see some areas that need assistance, it is very hard to come up with a needs list. My son does not say much, on given days nothing, about school. His needs at school seem to be different from home. An example that comes to mind,he plays nicely with a child at my house, but at school he doesn't interact. He might become physical or frustrate easily during this situation. I do not want the school to just address his behavior but help him develop the skills to start the interaction between the students in an appropriate matter.

Another thing I am torn on-is it helpful or hurtful that he is in a classroom where most of the students have IEP's? Will this hinder his education, since he is already bright should he be challenged more? Or is it a way to have him shine? Will it make him stick out more?

 

[C&G'sMama]

Can I, legally, ask if they have ever dealt with someone with Asperger's? If the haven't can I ask they we ask for help from an outside source?
Though I see some areas that need assistance, it is very hard to come up with a needs list. My son does not say much, on given days nothing, about school. His needs at school seem to be different from home. An example that comes to mind,he plays nicely with a child at my house, but at school he doesn't interact. He might become physical or frustrate easily during this situation. I do not want the school to just address his behavior but help him develop the skills to start the interaction between the students in an appropriate matter.

Another thing I am torn on-is it helpful or hurtful that he is in a classroom where most of the students have IEP's? Will this hinder his education, since he is already bright should he be challenged more? Or is it a way to have him shine? Will it make him stick out more?

DS(6) was diagnosed with Asperger's at 4. Our belief is you can ask the schools whatever you want to. Society has trained us to "leave it to the professionals". As a parent these are our kids and it is up to us. We are not confrontational about it but absolutely ask them about their experience with Aspergers. Work with the neurologist you went to as far as his needs.

As far as being in classroom where most kids have IEP's. Again discuss with the neurologist. Observe the classroom. No matter what classroom he ends up in he should be challenged academically. Something we are constantly working to improve at DS's school.

DS doesn't have the best writing skills but the school tries to hold him back because of that. He knows how to spell cat. Why can't he work on his writing skills while learning to spell restaurant? He reads at a 4th grade level but writes reports at a first grade level. He understands what he is reading and can tell you ad nauseum what the book was about. So why make him read Dick and Jane while he works on his writing.

You know what's best for your child. If you don't feel the school is doing what they need to do then speak up.


Good Luck.

 

[Mermaid02]

I would just like to add this for the OP- my son has PDD nos (very close to asperger's) and our pediatrician said to me "Jack reminds me of myself as a child" I hold onto that whenever things seem overwhelming.... Our doc is brilliant and has a wonderful family- he's VERY respected in our community. My son and your son could be just like that some day! (((((((hugs))))))))

 

[stampin_fool]

I am so thankful to you for sharing this information with me. As we get closer to college I am hopeful his coping skills will improve as we are working on them all the time. We are also trying to teach him how to advocate for himself as we are not at school with him and some situations call for an immediate response not one at a later time when things might be missed. It is great to hear how accommodating the school was and hope that where ever Jacob decides to go will be just as helpful and accommodating.

I also want to thank you for your kind words!

May I ask, was it difficult for you in middle school? Jacob really doesn't relate well to his peers, even with all of the social skills groups we have had him participate in. He gets very lonely but doesn't really talk about it and I really worry about him in that respect. I don't want him to become depressed because of his lack of friends. Did you have any strategies that worked, anything you might suggest that would help or give me so idea how to help him in this area? I have fought long and hard with the school and because of this the school as started a social skills group as a class. I am hopeful that this will be of some help.

Thanks again for answering my questions, I really appreciate hearing from someone who knows personally what my son is experiencing (maybe not exactly but you know what I mean).

ronda

I don't mind sharing at all. I'm glad to help whenever I can.

My mother was a wonderful advocate for me growing up. I can tell you will be the same for your son. Coincidentally, we share the same name! It sounds like your son is going to be a great asset to the world. I share his love of animals, and do animal rescue and rehab. I suppose we aspies have more in common than trains sometimes! (That is a joke I share with my wife. She is amused by the train fascination.)

Anyway, to answer your questions. I went to Duke on an academic scholarship. They did have an academic workshop my freshman year that helped those of us with processing disorders learn some tricks for college. The most invaluable thing was taking a tape recorder. I would then transcribe the important parts of the lecture. It would take a few times through to get it all, but by the time I had written it out studying was almost unnecessary! There are also tutors and academic labs. My mother would have advocated as needed, but honestly, once they were aware of the problem, everyone was more than willing to help. It is infinitely easier to function in higher education as an aspie than it is in the public schools. I think it is because there are so many more of us there. In fact, a good many of the professors are probably on the spectrum somewhere.

The most difficult parts of my schooling were the first two years of elementary, all of middle, and my freshman year of high school. They are way less willing to make accomodations there, as I am sure you have seen already. Luckily, I found that the older I got the better my coping skills became, but it certainly didn't happen overnight.

I'm married now, my wife and I have infant twins, and I can say without a doubt I wouldn't be here without my mother. I can't say this enough: It's so easy to feel alone, different, and depressed about it all. It feels like the world will never accept who you are as a kid. Having someone who loves you and doesn't try to change you (helping to learn to cope is different from change) makes all of the difference.

 

[blurrycat]

I am so thankful to you for sharing this information with me. As we get closer to college I am hopeful his coping skills will improve as we are working on them all the time. We are also trying to teach him how to advocate for himself as we are not at school with him and some situations call for an immediate response not one at a later time when things might be missed. It is great to hear how accommodating the school was and hope that where ever Jacob decides to go will be just as helpful and accommodating.

I also want to thank you for your kind words!

May I ask, was it difficult for you in middle school? Jacob really doesn't relate well to his peers, even with all of the social skills groups we have had him participate in. He gets very lonely but doesn't really talk about it and I really worry about him in that respect. I don't want him to become depressed because of his lack of friends. Did you have any strategies that worked, anything you might suggest that would help or give me so idea how to help him in this area? I have fought long and hard with the school and because of this the school as started a social skills group as a class. I am hopeful that this will be of some help.

Thanks again for answering my questions, I really appreciate hearing from someone who knows personally what my son is experiencing (maybe not exactly but you know what I mean).

ronda

Ronda,

I'm happy to answer anything you may want to ask. If it can help one kid get through to adulthood a little easier it is worth it.

Middle school was nothing but awful for me. I think it is for a lot of kids. Unfortunately, that is the age kids want to stand out the least, so they pick on the easy targets to keep from being targeted themselves. Add to it the transition to middle school and puberty, and it's easy to see how the depression comes in. I do have a few things that helped me.

I know your son has an interest in animals. Maybe you can get involved with a rescue group? It will give him a way to learn more and socialize with others on a more level playing field. Does he have any other specific interests? In my area we had both a summer technology camp and marine biology camp. I believe there are some after school programs as well. Getting him into something like that will probably expose him to other aspies, as well as give him a starting point for conversation with the neurotypical kids.

If you're interested in finding a rescue group I may be able to recommend one in your area. I still do work for a couple in our area. It's a wonderful outlet and I find that caring for other living things helps calm me.

I also wanted to add that no matter the interest you can probably find something but it may take a little (or whole lot of) work. My first job, at thirteen, was researching verdicts for an attorney for a certification. Boy did I ever get a lot of strange looks in the clerk of court's office day after day. It helped me learn quite a bit about people and the judicial system, though.

 

[stampin_fool]

Jacob has joined the after school Science club and is waiting for the Art club to start. I don't think that any of the kids really interact with him though (in the science club) and the Art club is mostly girls which he is really afraid of at the moment. He would really like to join the History club but last year it never ended up forming and it isn't looking good this year either.

He is really interested in WWII, Nascar, animals (cats especially) and his own little made up world. He has told me that he has friends in "his" world and I have tried to encourage him to make some real friends and not to stay in his imaginary world. I am hoping that the social skills class will help him learn how to make some friends.

He is very literal and is a very rule oriented child. When he sees the other boys acting "silly" he really frowns upon that as they are breaking the rules, which in his mind, means that they are being bad and therefore are bad children. It is very hard to explain to him the difference between being a kid and just being bad. There is only black and white, no gray area for him, LOL. We tried scouts for several years and he really enjoyed the activities but never really made any friends there. He tells me that the kids think he is weird. We have tried to explain to him that talking to himself out loud isn't a good think and that he needs to do it in his head or try to find another coping mechanism.

We did look into helping out at the local shelter but they wanted a fee for a uniform and wanted a commitment of a certain number of hours which we really couldn't do. There are times when Jacob wants to do things and then there are times when we will have to almost drag him out of the house to do something that he likes. Also the homework situation this year is a mess. There are times when we are doing homework from the time he gets home until bed time. So having to do a set number of hours a week is just to practical for us. If you have some contact info for a place that doesn't require that, I would love to look into it. I know he would love to take care of cats and small dogs. He is rather afraid of big dogs but loves cats with all his heart. He tells me he wants to have 100 of them when he gets his own house!

Wow, it is amazing that you were able to get a job with an attorney at 13 and also pretty funny since I worked as a paralegal for over 10 years before moving to GA and making Jacob my full time job.

Thank you for all of your suggestions, I truly appreciate it.

Ronda

 

[Earstou]

There's a lot I can relate to in many of these posts!
Personally, I held my pencil incorrectly, and remember all the attention I received until I learned to hold it the right way. Funny thing is, I now have arthritis, and when it flares, I use my orignial pencil grip because it produces less pain!! So my incorrect pencil grip actually ended up being useful!

My ds is Aspergers, but he was not diagnosed until 13. I suspected autism, but he was also adhd, and that was the only dx I could get for many years. Until I discovered Aspergers on my own, we were just dealing with ds the best we could! Once I suspected it, but could not get a diagnosis, the school started working with us, listing it as "autistic tendencies" on his IEP (IEP was orginally for speech).
DS could not catch a ball at his preschool screening, so he was tested for PT and OT. This was refused because he was "able to navigate" at school without major impairment. I was told the school looks only at how well they do physically at school when considering this. Catching a ball is not important to a school education, so it was not considered. Plus he had no problem walking around school, so no ot or pt.
We were told to throw a ball to him daily, as our own therapy. Later, in third grade, he worked with the PE teacher every morning before class started (when others were eating the school breakfast, so he wasn't missing class). This made him quite popular that year, as he was allowed to pick another student to go with him!
After third grade, we started having difficulties with other children bullying him. It seemed he was only appreciated at the times when his IQ was a benefit to others, such as during a knowledge bowl, where he helped win the contest for his team.
Middle school was better than 4-6th grades, our school is very structured with the kids on teams, and not much interaction between the teams, but we still had problems. Now that he is in high school, things are sooo much better. It seems it's okay now for people to be individuals! He has a group of friends now, that he occasionally does things with, but not as much as other teens. He does text them alot, just doesn't do much outside of school. But he seems perfectly happy doing it this way.

Stampin_fool said "There are times when Jacob wants to do things and then there are times when we will have to almost drag him out of the house to do something that he likes. Also the homework situation this year is a mess. There are times when we are doing homework from the time he gets home until bed time."
Ds used to be just like that, signing up for an activity, loving it, but not wanting to go at least 25% of the time. Once he got to the activity, everything was fine and he enjoyed himself, but getting there was difficult, even with advance preparation. Seems he was outgrown this now.
Homework has been our biggest problem for many years now! This year is great, makes home life so much more pleasant! I don't know if he has an easier load, or if he has learned to deal with it better.

A social skills class would be good! DS was not offered one until middle school, which he refused to attend, probably because he didn't want to set himself apart. But I think he would have met like-minded kids and benefited from it. He is now friends with someone that was in that group, and I think he could have made more friends by attending it!

Now we are thinking of college, and worrying about that! With the homework problems we've had in the past, that is the biggest worry, if he will handle the workload and seek out help when he needs it. Do we send him away, or make him live at home? Sending him away would do wonders for his maturity, but can he handle it?? But we've seen so much progress in the last few years, that when the time comes, he will probably be ready to leave!

 

[Earstou]

Sorry, duplicate post!

 

[stampin_fool]

There's a lot I can relate to in many of these posts!

Stampin_fool said "There are times when Jacob wants to do things and then there are times when we will have to almost drag him out of the house to do something that he likes. Also the homework situation this year is a mess. There are times when we are doing homework from the time he gets home until bed time."
Ds used to be just like that, signing up for an activity, loving it, but not wanting to go at least 25% of the time. Once he got to the activity, everything was fine and he enjoyed himself, but getting there was difficult, even with advance preparation. Seems he was outgrown this now.
Homework has been our biggest problem for many years now! This year is great, makes home life so much more pleasant! I don't know if he has an easier load, or if he has learned to deal with it better.

A social skills class would be good! DS was not offered one until middle school, which he refused to attend, probably because he didn't want to set himself apart. But I think he would have met like-minded kids and benefited from it. He is now friends with someone that was in that group, and I think he could have made more friends by attending it!

Now we are thinking of college, and worrying about that! With the homework problems we've had in the past, that is the biggest worry, if he will handle the workload and seek out help when he needs it. Do we send him away, or make him live at home? Sending him away would do wonders for his maturity, but can he handle it?? But we've seen so much progress in the last few years, that when the time comes, he will probably be ready to leave!

This sounds so much like Jacob. Homework is horrible, sometimes ending in tears for him and sometimes me. The social skills group that was started this year is also going to be addressing organizational skills and homework/classwork planning. I am hopeful that this will help greatly so Jacob understands that the teacher doesn't have to specifically say, study a little each night. Also help him with time management so he doesn't wait until the last minute to do something. I also plan to bring up anxiety issues at the next team meeting to see if they can work on that. It seems a little better this year in that regard but he has some really great teachers this year that seem to listen to our input on what are triggers for him and are doing their best to make sure that they don't include him in their blanket statements.

I am hopefully that things will get better socially for him as he reaches high school. It is so heartbreaking to watch him want to fit in socially and be included and then be shut down so to speak.

I can completely understand everything you have said about college, sending him off, keeping him at home, as I have thought all of these things as well about Jacob. (Never to early to worry, LOL!)

It is very encouraging to hear that your son is doing better socially now that he is in high school and it gives me hope that Jacob will do the same, thank you!!!

Ronda

 

[bookwormde]

I would suugest with homework that you might do what I did, which was to specify in the IEP that all homework would be sent home by only what was appropriate, effective and practical would be done an he would be graded on that.

bookwormdde

 

[blurrycat]

Ronda,

I'm sorry it has taken me so long to get back to you. I actually work with cat rescue and there are a lot of things that can be done on your own time. I'll send you a pm with more information.

I am fighting the urge to become longwinded on this passion of mine out in the open.

 

[stampin_fool]

I look forward to the pm. I know that Jacob would love helping out with the cats and I would too. There is nothing wrong with being passionate about something, so go ahead, be "longwinded". I don't mind.

Ronda,

I'm sorry it has taken me so long to get back to you. I actually work with cat rescue and there are a lot of things that can be done on your own time. I'll send you a pm with more information.

I am fighting the urge to become longwinded on this passion of mine out in the open.