Exhausted from parenting/ASD children/Welcome to Schmolland!

[snow white&7dwarfs]

Great points Toodycat. I love the way you explained it. My DS10 also tends to be the captain rules and regulations. It's wasn't so bad when he was younger, but getting into those lovely tween years, he's not quite understanding why the other kids are alienating him for "being a rat". I'll certainly keep your post in mind. Thanks.

 

[lovethattink]

Thanks for the suggestions Toodycat!

I was listening to an update on Autism this morning. I did not realize this, but DSM-5 will be out in 2013 and there are some major proposed changes to the diagnostic criteria for Autism. One of the changes is to take away the diagnosis of Asperger's Disorder, also adding severity to the diagnosis too which could eliminate many of the high functioning cases from an autistic diagnosis, thus changing eligibility for services.

 

[ppony]

Thanks for the suggestions Toodycat!

I was listening to an update on Autism this morning. I did not realize this, but DSM-5 will be out in 2013 and there are some major proposed changes to the diagnostic criteria for Autism. One of the changes is to take away the diagnosis of Asperger's Disorder, also adding severity to the diagnosis too which could eliminate many of the high functioning cases from an autistic diagnosis, thus changing eligibility for services.

Maybe you guys can help clarify something for me. What exactly is "high functioning" exactly? If someone is non-verbal can they still be high functioning? I only have an almost 4YO son so I don't think that title has much meaning yet, but I've always wondered. I would never say my DS is HF now, but perhaps one day he might be. I'm just curious.

 

[persimmondeb]

Welcome to the wonderful world of ASD, where no-one, including the clinicians, is ever quite sure what's going on. I'm actually not even sure if there is an actual clinical criteria for high-functioning, and I'm sure it varies depending on who's doing the assessment and what they're assessing for.

A non-verbal person could be intellectually high-functioning (literate, IQ in normal range, able to do complex tasks, etc.), but I don't think you could consider such a person high-functioning as a whole. My DS (who is quite verbal) is always classed as high functioning, since he's academically very able and generally very competent with everyday activities, but he has significant, specific developmental delays, and will actually present as more disabled than children who have more functional issues.

 

[lovethattink]

Maybe you guys can help clarify something for me. What exactly is "high functioning" exactly? If someone is non-verbal can they still be high functioning? I only have an almost 4YO son so I don't think that title has much meaning yet, but I've always wondered. I would never say my DS is HF now, but perhaps one day he might be. I'm just curious.

I am new to the world of ASD, been almost a year since my son was diagnosed by a psychologist, but the neurologist doesn't believe he has ASD, since he has a Cortical abnormality in his brain. Although he is sending us for OT and PT, and they are treating him as though he does.

Welcome to the wonderful world of ASD, where no-one, including the clinicians, is ever quite sure what's going on. I'm actually not even sure if there is an actual clinical criteria for high-functioning, and I'm sure it varies depending on who's doing the assessment and what they're assessing for.

A non-verbal person could be intellectually high-functioning (literate, IQ in normal range, able to do complex tasks, etc.), but I don't think you could consider such a person high-functioning as a whole. My DS (who is quite verbal) is always classed as high functioning, since he's academically very able and generally very competent with everyday activities, but he has significant, specific developmental delays, and will actually present as more disabled than children who have more functional issues.

My son too. At first glance he looks perfectly "normal". But after observing him for a bit the "quirks" start coming out. He is very verbal, in fact, hypercommunicative. He will talk to anyone about any topic HE CHOOSES. If someone talks to him about anything else, he might answer them, but get right back to what interests him. He often speaks in monologue and his conversation will be non-stop; whether anyone is listening or responding is irrelavant to him.

 

[Celidh]

Great points Toodycat. I love the way you explained it. My DS10 also tends to be the captain rules and regulations. It's wasn't so bad when he was younger, but getting into those lovely tween years, he's not quite understanding why the other kids are alienating him for "being a rat". I'll certainly keep your post in mind. Thanks.

I have only just found this thread. Since my first Disney trip and the planning for it is over, I have had more time to explore this site. I have not yet had a chance to read the whole thread, only the first and last thread. I wanted to comment on this comment and that of Toodycat. I have an 11 yr old Aspie. He was diagnosed a year and a half ago but I suspected then that he was an Aspie so it was no surprise.

Anyway, my son has some moderate problems with teasing and bullying at school. He has no issues with telling on someone for doing something against the rules. I have tried to talk to him about this. Let's face it, as said above, nobody likes a "rat". I put it to him this way, if it doesn't affect you, nobody is getting hurt and nothing is getting broken; walk away and forget it. Nope that doesn't fly with him. He said even if it would mean the other kids were mad at him, and would tease him, he would still tell on them because they were breaking the rules! He definitely walks to the beat of his own drum.

His new thing this year is that he is obsessed with having a tie and a dress shirt. He said it will make him look successful. One of the lawyers I work with gave me one of his old ties and I told ds I would buy him a dress shirt and he could wear it to Sunday school when he is at his grammie's house. Nope, he wants to wear it to school. I said no, I didn't think that would be a good idea but that he could wear it to the school Christmas concert. ONe day last year he wore his pants tucked into his socks because he thought it looked cool. I think he must get his fashion sense from his father. Today he wanted to wear a nice button down short sleeve shirt with his shorts, sports socks and sneakers and it was only 12 degrees above freezing! I made him put pants on and said he could wear the shirt tomorrow with a nice pair of jeans (today was gym day so he needed track pants).

When I pointed this out to his dad and jokingly said that I really didn't know how he hasn't been beaten up in school yet, his father said he only had one thing to say; "Sheldon Cooper". I laughed. My son is very, smart. He is such a sweet boy and I love him to death but I'm telling you, he has always been able to push my buttons like you wouldn't believe. I love him dearly though and wouldn't give him up for the world. (most days!)

I will be back later to read more.

 

[cuches]

I am new to the world of ASD, been almost a year since my son was diagnosed by a psychologist, but the neurologist doesn't believe he has ASD, since he has a Cortical abnormality in his brain. Although he is sending us for OT and PT, and they are treating him as though he does.



My son too. At first glance he looks perfectly "normal". But after observing him for a bit the "quirks" start coming out. He is very verbal, in fact, hypercommunicative. He will talk to anyone about any topic HE CHOOSES. If someone talks to him about anything else, he might answer them, but get right back to what interests him. He often speaks in monologue and his conversation will be non-stop; whether anyone is listening or responding is irrelavant to him.

This is why I don't understand how the diagnosis of autism can be applied to both your son and my daughter. My DD is 12 and non-verbal...I would do ANYTHING to hear a word from her (especially would love to hear her say mommy or I love you) She can communicate using an augmentative device but that is still 2 or 3 word sentances (I want pizza) She is prone to meltdowns but mostly due to the communication issues. I am not sure I agree with the proposed changes to the diagnosing criteria that I have been reading about but how is this one diagnosis covering all these clearly different children??????

On the other hand my step brothers son has aspergers and, like you said, he has these long one sided conversations that only interest him. Don't try to change the topic, he will ALWAYS go back to the original topic he chose. He has a VERY hard time making friends and the other kids are not as tolerant as his family.

Tina

 

[lovethattink]

This is why I don't understand how the diagnosis of autism can be applied to both your son and my daughter. My DD is 12 and non-verbal...I would do ANYTHING to hear a word from her (especially would love to hear her say mommy or I love you) She can communicate using an augmentative device but that is still 2 or 3 word sentances (I want pizza) She is prone to meltdowns but mostly due to the communication issues. I am not sure I agree with the proposed changes to the diagnosing criteria that I have been reading about but how is this one diagnosis covering all these clearly different children??????

On the other hand my step brothers son has aspergers and, like you said, he has these long one sided conversations that only interest him. Don't try to change the topic, he will ALWAYS go back to the original topic he chose. He has a VERY hard time making friends and the other kids are not as tolerant as his family.

Tina

I don't know Tina. The psychologist said he met the criteria for Aspergers, but the neurologist wants to hold off on labeling my son. For now they are going with these diagnosis Cortical Dysplasia, Epilepsy, Developmental Delay, and Sensory Integration Disorder.

Here is a link to the proposed DSM-5 criteria for Autism Spectrum Disorder
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

 

[toodycat]

Hi, everyone. Just thought I'd stop in and say hi. We are on our way to WDW tomorrow. I can't wait for a vacation with our little nuclear family! DS is doing really well so far this school year. He's sitting with other kids at lunch
and enjoying it. I met all of his teachers last night and they seem to "get" him. I'm hoping he'll have a really positive senior year to boost his confidence for college. We are working on applications for some local schools. He doesn't want to go away and it's not as though I'm ready to send him.

Anyway. I hope you all are well and that the school year has been kind to your kids so far. I'll think of everyone while I'm on "Soarin" with my boy and getting all that vestibular stimulation.

L'Shanah Tovah! Happy New Year!

 

[Clochette nordique]

bump!

Sorry, I didn't posted my story yet, but I still intend to. If I just can get out of Schmolland to breathe a little.

Oh, and by the way, you people are probably the only one who can understand that: I'm going to celebrate my Valentine's 50th birthday, cruising solo on the Wonder on the Mexican Riviera!

DH46, recently diagnosed with Asperger, just doesn't get what I need. DD11 (ASD) is not, going to put up an intimate close friends 50th-birthday-life-transitioning-party neither of course! So, instead of mopping all week long for not being understood and getting my needs met in Schmolland, I am choosing to treat myself as much as I can. And for that week, I'm leaving everybody in Scmolland and will fly accross the continent to L.A.! I will even be in DL for two days before the cruise - which is one of my little girl dream...

Being born on Feb 14 doesn't always make it easy, and even less in Schmolland!

Thanks for being there when we need it!

Poussière de fée!

oops... I realize I wrote a lot, for someone who just wanted to bump this thread!

 

[toodycat]

bump!

Sorry, I didn't posted my story yet, but I still intend to. If I just can get out of Schmolland to breathe a little.

Oh, and by the way, you people are probably the only one who can understand that: I'm going to celebrate my Valentine's 50th birthday, cruising solo on the Wonder on the Mexican Riviera!

DH46, recently diagnosed with Asperger, just doesn't get what I need. DD11 (ASD) is not, going to put up an intimate close friends 50th-birthday-life-transitioning-party neither of course! So, instead of mopping all week long for not being understood and getting my needs met in Schmolland, I am choosing to treat myself as much as I can. And for that week, I'm leaving everybody in Scmolland and will fly accross the continent to L.A.! I will even be in DL for two days before the cruise - which is one of my little girl dream...

Being born on Feb 14 doesn't always make it easy, and even less in Schmolland!

Thanks for being there when we need it!

Poussière de fée!

oops... I realize I wrote a lot, for someone who just wanted to bump this thread!

I totally get it. If the people you love can't do what you need, realizing their limitations and correcting them yourself is the only way to keep you happy and avoid resenting them. We have sailed the Mexican Riviera on Holland America and it is beautiful destination. I loved the Wonder when we sailed to the Bahamas. The first day or two at sea is a little chilly, but once you get to Mexico, it is gorgeous! Puerta Vallarta is a fantastic town with some good shopping in terms of local handicrafts and an amazing candy store. Make sure you walk the downtown along the beach. The sand sculptures are incredible. In Cabo, the natural arches are breathtaking. DL is awesome and in some ways it compares favorably to WDW. For one thing, it is not as hot.

Everything in my neck of Schmolland is OK. We've finished DS's college applications which is a major relief. He did well enough on his ACT that he doesn't need to take it again. His high scores in math and science and low scores in language really reflect how lopsided he is cognitively. But, when you put it all together, you get an average score. Naturally, DS is staying home. He doesn't want to leave me or his cat. Next step: a driver's license so he can commute to college in the fall. The only stumbling block in the whole college picture is that one of the schools asked for his IEP. When I checked it before mailing, I found that some of the comments were way outdated and inaccurate. They made him sound much worse than he is. I called the school psychologist who pretty much admitted that the teachers hadn't changed the comments from the previous years. Now, we have to have a CSE to update the comments on the IEP. I'm a teacher and I would usually take their side, but would it have killed last year's teacher to put some more current information in there? Sheesh...

 

[ppony]

I don't get to read this thread often but it's nice to know hear similar Disney nuts with kids like we all have. Wanted to share w/ others that can relate.

Our Schmollander DS who turns 4 on Wed., for the first year EVER, let us put a costume on him and he KEPT IT ON! Only in the last 3 months has he allowed any "hat" or headphones on his head and he still rips them off half of the time. But we were just beyond elated that he went out tonight for a quick trip up and down the block. And then, once he came home and saw what he got while he was out, he brought is his shoes and the costume and wanted to go out again!!! So he did! He's still non-verbal but he even mumbled a little "trick or treat" in the right number of syllables. YAY!!!

YEs, that's actually a partial smile. A VERY rare thing w/ him. And NATURALLY we're proud that he LOVES Mickey. I mean LOVES!!!! He could care less about anything else on TV.

 

[Clochette nordique]

I don't get to read this thread often but it's nice to know hear similar Disney nuts with kids like we all have. Wanted to share w/ others that can relate.
Our Schmollander DS who turns 4 on Wed., for the first year EVER, let us put a costume on him and he KEPT IT ON! Only in the last 3 months has he allowed any "hat" or headphones on his head and he still rips them off half of the time. But we were just beyond elated that he went out tonight for a quick trip up and down the block. And then, once he came home and saw what he got while he was out, he brought is his shoes and the costume and wanted to go out again!!! So he did! He's still non-verbal but he even mumbled a little "trick or treat" in the right number of syllables. YAY!!!
YEs, that's actually a partial smile. A VERY rare thing w/ him. And NATURALLY we're proud that he LOVES Mickey. I mean LOVES!!!! He could care less about anything else on TV.

Our pediatrician kept saying that with ASD, it could only get better... well, it does... hu-hum but for DH46... I suppose it also gets to stay the same after a certain age...

But anyway, your little one is very far from DH46 age, so lets enjoy!

Poussière de fée!

 

[ppony]

Our pediatrician kept saying that with ASD, it could only get better... well, it does... hu-hum but for DH46... I suppose it also gets to stay the same after a certain age...

But anyway, your little one is very far from DH46 age, so lets enjoy!

Poussière de fée!

What a great way to look at it!! THANKS!!

 

[toodycat]

It definitely gets better. I'm taking DS to his first college interview on Friday. When he was little, that seemed like so much to hope for, but it's really happening.

 

[Clochette nordique]

It definitely gets better. I'm taking DS to his first college interview on Friday. When he was little, that seemed like so much to hope for, but it's really happening.

Yeah!!!!

Who would have said so, years ago, when everybody was still absolutely scared of ASD? This is probably why my 74 y.o. mother was never diagnosed. But DH46 was diagnosed in June. We're making huge progress! There are many adults around me, that are diagnosed lately: little sis hubby, a friend, DH, etc. (Yes, of course, I have many bold traits! but apparently, I'm still not on the spectrum )

Keep smilling. Schmolland will always be Schmolland. But it's not what it was decades ago! Or, do we just get use to it?????

Poussière de fée!

 

[ppony]

It definitely gets better. I'm taking DS to his first college interview on Friday. When he was little, that seemed like so much to hope for, but it's really happening.

 

[ppony]

We celebrated my little Schmollander's 4th BD yesterday. He just went and showed us how far he's come in such a short time. He smiled SO MUCH and he really seemed to understand that the day was ALL about him! It was pure magic!
It DOES only get better!!! THANK EVERYONE on this thread for sharing all their highs and lows. All their experiences and insights. It's a beautiful thing!

 

[toodycat]

PPony--Glad your guy had a good birthday! Our kids "get" so much more than they are able to express. I'm sure he felt how much you and your family love him on his special day.

Good news on our front. DS got his first college acceptance to a nearby state college! I am so proud of him. We are still waiting on results for the other schools he applied to, but it is so good to know that he has one acceptance in place.

 

[bookwormde]

congrats on everyones progress and successed.

Clochette nordique

While those of us who are older certainly stay ot a great deal to a routine and what is comfrotable, I actually think that in substanitive ways older aspies it is actually more commonly "change" than neurotypicals since we are always learning and when presented by a new logical perspective over time integrate that logic and do not have the social restictions that prevent it adoption.

bookwormde