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folklaur
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| Posted: July 05 2008 at 12:29am | IP Logged
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I have never felt depressed because of my ds having Asperger's/autism. Sometimes, though, I just feel sad, for him.
So often, people talk about symptoms that sound "similar" to Asperger's or HFA, but then mention that their child grew out of it. Well, Jaiden has had little signs that something was amiss since he was born, although it is easier to look back now and see it more clearly. But he isn't "growing" out of his behaviors. They are just becoming more obvious. Sometimes i wonder if people are having kids diagnosed just because they aren't developing as quickly as some of their peers, and so the parents assume there is something wrong when in actuality the child is just a little immature for his age or something. Because that isn't the case with ds. And now that he is almost 10, the difference between him and his peers are becoming more glaringly obvious.
He tried so hard to talk to other kids, other people. But unless they are well versed in either lego / bionicles or maybe Zelda, they are going to have no idea what he is talking about, but he doesn't realize that. He just keeps going. I try to be there to explain and such, but I am just so tired. I am tired of saying, "Remember to keep your voice down." "Remember not to plug your fingers in your ears." I am tired of being constantly vigilant so I can gently hold his hands so he doesn't hit himself.
I am tired of other people ignoring him because they don't understand him.
And with everything going on, my skin just isn't as thick as it usually is and I am just tired.
Does anyone have any success stories of an older child with Asperger's/HFA? His personality is such that he is never aggressive, usually stubbornly timid, but very smart. he hears things once and will have them memorized. But he is lonely.
thanks,
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At_His_Feet
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| Posted: July 05 2008 at 3:18am | IP Logged
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Hi Laura,
My ds is only 8 so I can't really answer your question. I'm replying simply to say I know how you feel.
I've heard people say before that they grow out of it. I think this type of thinking is wrong and dangerous. Our kids will always have aspergers. They may learn how to fit into our social world, but I think it's wrong to think that they will out grow autism. We (ie. society) need to learn how to celebrate the difference that kids on the spectrum present.
I sometimes feel that because I hs, the differneces in my son are less obvious to me. I'm not sure if this makes sense.  I'll go happily along thinking everything is fine, then we go to a hs event and it hits me that Campbell simply is not like the other kids. When he's home it's easy to miss his difficulties, because he's comfortable.It sounds silly but it's like having Campbell diagnosed all over again!
In regard to having a loud voice, have you heard of "The Incredible 5 Point Scale" by Kari Dunn Buron and Mitzi Curtis.? It works like this. # 1 is not talking/ silence #2 is a whisper #3 is a normal speaking voice #4 is a louder outside play type voice and #5 is for an emergency. So we simply say "Campbell number 3 please." and he adjusts the volume. It works a treat. The book also covers other situation which can be used with a 5 point scale. Sorry if you've heard of it before.
Take care,
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Tricia
Mum to 3 boys 17, 15, and 10.
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Tina
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| Posted: July 05 2008 at 8:37am | IP Logged
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I'm afraid I'm not going to be any help. I can sympathize with both of you, though. It is so painful to watch your sweet child struggle just to make a friend. I don't know if my 9 yo daughter has Asbergers or not, but something has been "off" with her for as long as I can remember. She has always had social issues. She gets along best with children younger than herself. She's very friendly and outgoing, but can be very hard to understand. Not due to speech problems, it's more of the "way" she says what she says. She's been an easy target for being picked on by peers and older kids. I took her when she was around 5 to be evaluated and all they could give me is that something is "off" with her. What does that mean? We had her speech tested, along with many other things. She didn't qualify for any kind of help through the school or with a doctor (through our insurance). She has a lot of "little" things wrong and therefore does not qualify in any one area. They did eventually give her six weeks of occupational and physical therapy based on what they called "mild dispraxia" and sensory processing disorder. They were about to help her with some "speech related issues" when our insurance (in agreement with a new pediatrician) decided it "wasn't medically necessary"  . After a few years of this, and not getting anywhere, we decided to let it go for a while. I was afraid she would think that mommy and daddy think something is wrong with her. I was afraid of what would happen to her self-image.
She still struggles, although she has one friend who is her age. (I prayed and prayed for that for a very long time.) She has a another friend, who is two years younger. Her best friend still continues to be her little sister (although neither would admit it). She has always been obsessed with one thing and talks about it constantly and reads about it and gets very noticably excited about it. Now that she's a little older though, I can remind her that her one friend might enjoy talking about other things and so she is less pushy about it.
If you don't mind my asking, how did you get your children diagnosed? Are there mild forms of Asbergers and maybe that's why our doctors have missed it? Are there specific tests?
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~Tina
mom of 3 girls and 1 little man
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folklaur
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| Posted: July 05 2008 at 11:56am | IP Logged
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Tricia - no, I hadn't heard about the 5 point scale before. Thank you!
Tina - When we went through our insurance, at first, it was an absolutely frustrating joke. He got a diagnosis of PDD-NOS - which is technically "Pervasive Developmental Disorder - Not Otherwise Specified" ----which actually means, "Yes, there are things off with him but we aren't sure what and he doesn't fit into any of the standard diagnosis" - which also means getting any services was next to impossible.
Luckily, our Family Doctor listens to us, and he was able to get us a referral to a "Developmental Pediatrician." He was great. He spent so much time with Jaiden, testing him (although it seemed like playing) and talking with us. So - even if you have to jump through hoops and make a bajillion phone calls, if you get get a referral to a D.Ped, I would do it.
The diagnosis was for us, as parents. If we knew what Jaiden was dealing with, we could be able to better parent him, teach him better coping skills, etc. We would know better what to expevt from him, and what things he just couldn't handle. We could also help other people to understand. So that was why a diagnosis was something we wanted (and also to be sure there wasn't something else 'wrong.' My brother had a brain tumor, so I always had a concern like that too, that there could have been a physical 'something' that was wrong, iykwim.)
So the Developmental Pediatrician told us he could make a case for either Asperger's or High Functioning Autism (only HFA would get us any services covered.) However, he said that he thought Asperger's fit overall much better (Jaiden talked late, and usually Aspie's talk on target, and his fine motor skills are just fine, good actually, and lots of times kids on the spectrum have fine motor problems. However, I think that is because he has played with legos since forever.)
So anyway, that is what I would suggest  - Hope it helped a little,
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Tina
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| Posted: July 07 2008 at 3:47pm | IP Logged
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Thanks so much, Laura. I'm still up in the air about what route to take with my dd. She really is a happy, easy going kid most of the time (at least on the outside) and I don't want anything to change that, but a diagnosis would be helpful for all the reasons you mentioned. A developmental pediatrician is who I'll look into next if we do persue this further.
I will keep you and your ds in my prayers.
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~Tina
mom of 3 girls and 1 little man
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SimplyMom
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| Posted: July 08 2008 at 11:12am | IP Logged
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I don't think children with developmental disabilities out-grow them. I think some children are misdiagnosed early and then I think there is a certain leveling out that can happen in the teen years/early 20s. Where children with, especially social/processing/communication issues, learn to work around them so it might look like they out grow them when what has actually happened is that they deal with them more effectively.
Even normal kids when they hit puberty have a hard time. It takes a while to adjust to the new feelings, the hormones the bodily changes. Once they work through that it seems to be a little better.
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Darcee
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mom3aut1not
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| Posted: July 15 2008 at 10:54pm | IP Logged
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Laura,
A few points in random order....
1) I have used the five point scale a bit with my ASD 20 yo. I am currently using The Social Skills Picture Book with my ASD 8 yo, and I did use a couple of Jed Baker's other books with my ASD 20 yo. With both the ASD 22 yo and the ASD 20 yo I also did a lot of commenting on (blush) TV shows -- using them to discuss social skills and social understanding. Lots and lots of it. (I got this idea many years ago from a former job coach for autistic people.) Teaching social skills will be incomplete even after they grow up, but the time you spend on it is worth it. It will take a lot of discussion because ASD people don't get this stuff naturally -- and some of it they will just have to take your word for. It's hard.
2) People with developmental disabilities don't outgrow them; they may learn to cope better, but they don't outgrow the disability. A member of my family was actually used to demonstrate this to people studying to be psychologists at Johns Hopkins.
3) As for friends -- you can happen upon them here and there. I have found that the best friends for my ASD kids have been NTs who were unusually accepting and kind people. (This description also fits my dad; my mom is pretty clearly on the spectrum.) Another possibility is to find people (ASD or NT) who share the enthusiasms of your son. Right now, my ASD kids don't have any friends IRL. but the older two are currently also very busy, and my little guy has just been in Cub Scout Day Camp.
Have to run.
In Christ,
Deborah
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albeto
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| Posted: July 18 2008 at 1:37pm | IP Logged
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Hi Cactus Mouse. I know just exactly how you feel. I listened to years of my in-laws telling me he'll just outgrow it. Even now dh thinks if he explains things "the right way" ds will just do it right from now on (apparently they argued for an hour last night when I had to leave - as if *that* will make the last 13 years "click"!). They just don't get it isn't a willful or habitual thing or a matter of maturity. It is a matter of how the brain processes information from taking it in to figuring out what to do with it to acting on it. The idea of successfully understanding the whole situation and predicting an appropriate response gets muddled up inside as it is competing against the constant bombardment of sensory input (some fiercely sensitive, others seeminly absent), memories, emotions, logic and planning. It can be a challenge for them at the best of times and certainly a challenge for us as we watch, seemingly helplessly.
But we don't watch helplessly, do we? We constantly watch vigil over our kiddos and keep them out of trouble, we point out things that other kids think are "obvious" but are really oblivious to ours, we plan days to minimize frustrations and slowly, lovingly, teach them how o deal with the inevitable frustrations they will encounter (as we all do). It can be tiring (even exhausting), but there is help. There are resources for us that our friends with older children didn't have.
Here is a website that leads to various RDI forums. RDI is the therapy that teaches from the inside out - teaches the child how to be observant and how and when (and why) to respond approrpiately: http://www.rdiconnect.com/RDI/RDISupportGroups.asp
I would also encourage you to look at Jeanie MacAffee's book, Navigating the Social World http://www.amazon.com/Aspergers-What-Does-Mean-Me/dp/1885477 597/ref=sr_1_1?ie=UTF8&s=books&qid=1216404944&sr=1-1 as a study lesson daily or weekly if you haven't already. My other favorites are Asperger's What Does It Mean to ME? http://www.amazon.com/Aspergers-What-Does-Mean-Me/dp/1885477 597/ref=sr_1_1?ie=UTF8&s=books&qid=1216404944&sr=1-1 and Learning the R.O.P.E.S. For Improved Executive Function : http://www.autismandbehavior.com/products.htm. I have yet to find any examples of this book but I have it myself and have found it to be one of the most important resources for flowcharts and organizational tools to help "connect the dots" as our behaviorist always says, between what our kids know and what they ought to do with that knowledge.
All these resources work to move the responsibility of pointing out important information from you to your child. It can be done but, as with a toddler first learning, our kids need lots of hands-on experience learning and lots and lots of repetition. For example, instead of reminding your ds to keep his voice down, you can play a game where quiet voices are advantageous. Gosh, off the top of my head I can't think of any (sorry!) but I'm sure the RDI forums have tons and tons of ideas like this. We used to play a game of hide and seek / warmer-colder with objects around the house where we would hide the object and ds would look for it. Not allowed to speak, he had to read our faces for cues - working on particular opposite expressions like excited and bored, he had to determine which emotion our face expressed for clues (excited meant "warmer" or getting closer). This helped him in finding information in people's faces during the rest of the day and eventually figured out when his peers were showing signs of boredom. Our biggest challenge around here is control which is also very hard to address. 
Don't forget to eat well, get enough rest, pray, pray, pray and pray some more. Here is an article on the Spirituality of Suffering that really spoke to me. Perhaps you can find some consolation as well. http://www.4marks.com/articles/details.html?article_id=1867
God bless
(and of course, NONE of the links come out. sigh. sorry about that)
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Milehimama
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| Posted: July 19 2008 at 8:44am | IP Logged
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I think that diagnoses are so hard at this point, because it is very new.
My son was dx with Bipolar, then MDD-NOS (Mood Dysphoric Disorder, Not Otherwise Specified). He has learning disabilities, sensory issues, and initial withdrawal (boy, it's fun taking him shoe shopping!). As he gets older and communicates differently, and some things seem to be outgrown even as others appear.
So now they say he has sensory issues, but not SID; he has autistic tendencies, but not PDD or Asperger's, etc.
I think when people say they've "outgrown" something, it's really because the diagnostic criteria are so subjective and fluid. Also, I agree with albeto, his (and mine!) coping skills are better so it seems like it's not an issue anymore. His problems are very small, right now, as long as he's on his meds.
Sometimes I tell people he has Asperger's because it is easier than trying to explain all the other stuff. They can wrap their mind around that one word diagnosis, even though it is technically inaccurate.
I know a great blog of a lady who is using RDI with her Asperger's teenager, integrating the Charlotte Mason method. She posts extensively on WHAT they do and WHY (her daughter is 15 or 16, I think?) but I don't know if I'm allowed to post links in the forum. PM me if you are interested in the link.
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Taffy
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| Posted: July 19 2008 at 10:06am | IP Logged
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Laura,
No words of wisdom or success story here; although I am faithfully praying for one for my son - and yours!
I hope that you're feeling better about things now.
There is this marvelous article at the “Floortime Foundations” site that really illustrates how important it is to never give up on a child’s ability to progress and learn. I really encourage you to read it… here’s an extensive quote from the article to entice you to read it in its entirety:
Quote:
If you think of your child’s learning as the building of a skyscraper, you can picture the emotional milestones as the building’s foundation. They must support 80 stories—80 years of living in the world. They must be very strong, for if those basic skills are shaky, the entire building will be at risk. It is far better to have a solid foundation developed late, than a shaky foundation developed on schedule. Ideally, all children would function at age level in every area, and some children with special needs with whom we have worked have achieved this level of functioning. But quality of learning must never be sacrificed to the desire to move ahead. If building a solid foundation and strengthening the milestones means temporarily taking more time, we encourage that, because without that foundation your child will never be able competently to move on to more complex ideas.
Maintaining this philosophy is difficult in a world that places a premium on learning certain skills at certain times. Most children learn to read and write at age 6 or 7. They learn to write in script at age 8. They learn fractions at 9 or 10. Certainly these skills are important, but take a longer view for a moment. When a person is 35, what difference does it make if he learned to write at age 7 or at age 9? In either case, he can write letters to friends and take notes in school. What difference does it make if a person learned to answer a “why” question at 3 or at 4? If the quality of the answer is good at age 7—if the child can give three or four answers, all of them logical—the child has a solid foundation for abstract thinking for the rest of her life. There is still plenty of time to fine-tune that skill over the next 30 to 40 years. The emphasis on when a child learns skills is misplaced. Far more crucial is how well she learns them.
Unfortunately, our therapeutic and education systems don’t always embrace this way of thinking. Sometimes a child’s opportunities are limited at the elementary-school level because he had been grouped with other children who also have difficulty learning. Most often, when a child becomes a teenager and is several years behind his peers, we stop offering interactive therapies (which might build the basic skills) and instead emphasize practical splinter and community-based skills, such as making things and handling money. As a result, the child’s cognitive education is halted and he never advances to more abstract levels of thinking and behaving. But why assume that because a child has not learned to think abstractly by age 15 he never will? Our brains continue to develop until our mid-50s. Why not assume that if we continue to work with children in optimal programs, they can move up the ladder of milestones and become—at 20, 30, or even 40—flexible, logical, abstract thinkers.
If we start working with a 12-year-old boy who behaves like a 4-year-old and keep going for as long as his learning curve is going up, by the time he is 16 he may function like a 6-year-old. He’ll have made significant progress! If by the time he’s 22 he behaves like a 10-year-old, he’ll be able to live semi-independently rather than in an institution. If by the time he’s 30 he can function like a 15-year-old, he’ll be able to go to a two-year college, have a girlfriend, get a job, live a good life. Is this possible? We don’t know. The experiment is yet to be done. But we do know that the brain and the nervous system are much more elastic than formerly thought, and we are now seeing large numbers of children who develop skills at later ages than once thought possible. So in fairness to these children, why not continue to offer them the opportunity to learn as long as their learning curves are rising? If we do otherwise, we risk creating a self-fulfilling prophecy; we risk unconsciously limiting a child’s potential by limiting the experience we provide. |
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At least, reading this article generally helps me to feel better. 
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Susan
Mom to 5 on earth and 1 in heaven
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julia s.
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| Posted: July 23 2008 at 4:17pm | IP Logged
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Laura,
My son's outward show of symptoms is milder than your sons and I think my husband and I can fool ourselves into thinking that he is advancing when in fact it's just that he does the same routines and is in familiar settings that his Asp. doesn't present itself.
Recently, however, my husband took my son to his first boyscout camp. And all the old behaviors came out to play. My poor husband had to work as advocate and very patient parent for my child. My son just needs us to be near him to guide him in new settings until the new settings are familiar enough for him to find coping strategies.
My time to write is running out, but here is what I think. I don't think if your child has Asp/HFA that it goes away so much as I think the child develops strategies that allow him to be in a variety of social settings. (I sometimes don't even think he understands that he needs these strategies, my son is rather oblivious to others reactions, so much as as the parent you have to go over how what he did or said put the other person off and how he has to work on better social behavior).
I don't know what therapies he is getting, but I'd bring up your concerns that he's still not able to be among peer groups and what he does during these times that is off-putting. There might be a social skills group that he could join that would mediate. Or sometimes just practicing with a very understanding cousin or neighbor would help this too. Oddly enough I think more exposure not less is the answer. But I'd start off small.
Also, a lot of kids out there have problems that you might not be picking up on because you're focused on your own child. Sometimes when others are turned off from you child it's their issues that are getting in the way not your child's.
It is hard to watch the struggle -- this past week with him at camp my husband (who got the brunt of the behaviors) was sad and deflated that there is always so much work to do with my son. But, I do believe that it will be worth it in the end.
Sorry I have to go. I'll pray for you.
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julia
married to love of her life
with ds12 ds8 ds3 and ds1
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Topic: I'm hurting for my ds
