Greetings,

I am the parent of an autistic son, and he is my inspiration and my life's dedication. I wanted to start a thread in order to discuss issues, tell stories, share inspirations and successes, provide advice or simply support for any topic related to autism, special needs and learning delays in general. All are welcome!

UPDATED ANNOUNCEMENT: 24-Apr-2006

All of the autism discussion will be moving to the Autism Awareness Group/Ship, please bring your participation there, and while you're there, please sign up as a member of the group. All are welcome, whether interested parties, those whom want to learn more, those affected by autism and special needs, whomever wuold like to join! Here is the link; I look forward to your continued participation:http://www.thefuselage.com/Threaded/showthread.php?t=40154.

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Inspirational Story

I wanted to start the discussion by posting an inspirational story to me, one of absolute hope where often hope is clouded. You will see how the word inclusion can take a transcendental step beyond co-existence and into admiration and kinship; I hope you wll read and watch the corresponding video of this amazing story:

http://sports.espn.go.com/espn/news/story?id=2352763

-Mang

Stick,

I'm so glad you created this thread. While I've not been personally affected by autism on a familial level, a friend of the family has a grandchild who is autistic and one of my best online friends has a son who is autistic as well.

I saw the video about Jason on television last week, I believe. I was absolutely overcome by his achievement that night and by the acceptance others gave him (and are still giving him, according to the article). Being born with Spina Bifida, I have also been "on the sidelines" as they say, so I can definitely empathize with that young man.

I'll definitely be keeping an eye on this thread. I hope that I can contribute something worthwhile to it.

I am the parent of an autistic son, and he is my inspiration and my life's dedication. I wanted to start a thread in order to discuss issues, tell stories, share inspirations and successes, provide advice or simply support for any topic related to autism, special needs and learning delays in general. All are welcome!
-Mang

It is so great that someone finally started this thread. My sister has autism and tuberous sclerous. She has been an amazing part of my life. I have found many miracles in her life and love her completely. Her doctors never thought she would live or even learn to walk, but with alot of persistence she has conquered all these obstacles.

Congratulations on starting a great thread StickMang!

My son is 12 and was diagnosed at age 2...at the time..the youngest ever diagnosed at University of Michigan Hospital. He did not speak until age 4...english..he understood Japanese...

He has multiple savant skills...flash multplication of any two numbers...photographic memory and instant recall...and if you tell him the month date and year you were born on he will tell you the day of the week it was within three seconds.

He is in regular school...we hope he can continue in the middle school next year without them sending him to a special school. If not...we will sue until we win.

An absolutely marvelous child...he has taught me so much about life...people really need to understand what this is all about. Ten years ago..is was one in 500 kids...now it is 1 and 130 kids...

I have my solid beliefs as to the cause but unless the OP wants us to open that can of worms..I will keep it to myself and just ask people do their homework about what is being put into their childrens bodies as the grow...

Thanks for the thread!

I don't pretend to know the exact cause of autism, nor be so closed-minded to shut out discussion to all potential causes. One current view is that it is genetically predispositioned, or alternately, that it's genetically latent and activated by an environmental trigger such as birth trauma, food, a virus, immunization, etc.

I just wanted people to know that throughout all of the difficulties, there are probably others with somewhat similar experiences with whom to share your stories and successes, or to seek solace and support, to look for advice, or provide a place to brag and be proud, to discuss scientific theory or perhaps share favorite reading material or inspirations!

Your response so far is proof that we do exist, that we care deeply for these beautiful people, that we can share with each other and raise awareness. all in one thread!

Thank you for a great start!
-Mang

I used to babysit for this really nice couple who had a son and a daughter. The son was autistic, but i knew right away that did not make him "abnormal." His sister and he are such great kids and I am so glad i got to know them better. I don't know much about autism but i know that so much can be accomplished by perseverence and not always taking what the medical world dishes you on what they can and can't do.

Blessings,

Danny

Edit: BaileysDad- i hope that the school will come to their senses and allow your son to enter with no problems. If not, i hope you win :)

He is in regular school...we hope he can continue in the middle school next year without them sending him to a special school. If not...we will sue until we win.

Baileysdad, thanks for sharing so much of your son!

I can't think of a situation where we haven't had a concern warranting a call to a teacher, therapist, specialist or the guidance office just to get information. Luckily, many times we can obtain the proper information from a phone call or at a meeting. I make it a habit to get their assessment of his current status as it relates to his IEP/education plan goals, as well as placement status for a summer program and the next year; I always want to be prepared.

At times, we've had to recall the special education team to discuss my son's plan and progress, and at every meeting we ask for their current assessment on class placement (inclusion, separate, offsite, etc.), and offer our opinions, so that if they are not the same, that we have time to prepare for the next step.

I'm sure you've done this, but maybe you could ask your special needs coordinator to provide you their current assesment or project their recommendations for your son's placement next year. Alternately, call one of your therapists/specialists/classroom teacher directly and get their assessment, since these feed into the school recommendation. If there are concerns, you have the right to call a meeting of the special needs team/TEAM to dicuss his current education plan/IEP.

I hope it all goes well,
-Mang

Baileysdad,

What Stick said. Fight hard to keep your son in "regular" school. It wasn't until the fifth grade that we (my family and I) ever heard of an IEP or realized that yes, schools have to do certain things. It was a tug of war all through middle school it seemed. School officials can be an obstinate bunch. Now, I'm not saying that to discourage you. I just want you to know how important it is that you fight if need be. I'll be keeping my fingers crossed that you won't have to.

My son is 12 and was diagnosed at age 2...at the time..the youngest ever diagnosed at University of Michigan Hospital. He did not speak until age 4...english..he understood Japanese...

That is very amazing! My sister still does not speak completely like you and I, but she has her own language. It is great that there is finally a thread for Autism. All the more power to you fellow 'lagers for sharing your amazing stories. Best of luck to you with the school system, Baileysdad! :biggrin:

I haven't had a personal experience with Autism. But I am an educator and I know how hard parents have to fight against "the system". Stay strong.
I also wanted to say how much I support and respect you all. When my baby was born, her right arm was paralzyed because of birth trauma. It is slowly recovering and she may eventually get full use of it or not. It such an interesting, wonderful, difficult road you walk if your child is born and doesn't fit into that stereotypical "perfect" box.

What a wonderful thread SM!!! My 4 yo. nephew has Down Syndrome and has had multiple heart surgeries due to his Ventricular defect. He is the strongest, sweetest most wonderful human being I have ever met and I couldn't love him more. He is my rock when things seem to not be going well I just think about my little superman and how much he's had to endure and overcome in his short life so far and it makes all my problems seem so small and inconsequential in comparison!!! And he has a smile that lights up the entire universe!!! Now I'm getting all mushy talking about him. He had his most recent heart surgery last month and is doing WONDERFUL now, besides a little pneumonia but he gets that often. He's my baby!!!

My sister still does not speak completely like you and I, but she has her own language...All the more power to you fellow 'lagers for sharing your amazing stories.

EarlhamGirl,

It sounds like you are a wonderful sister, and I bet you understand her language well. My son could not communicate for years, with significant language delays, and he communicated non-verbally, and eventually in his own language as well. We understoofd a few of his words, and eventually, with help, therapy, lots of practice and patience, he's become more communicative, though still quite delayed. Sometimes the more difficult part is to teach family, friends and those around you, since they slap "typical" expectations to them, end expect them to perform like other kids. It's wonderful to see the small successes, the gains and to watch the verbal transformation, but the best is to see the smile when your child can finally get you to understand that they want a cup of water, and the joy that brings to him and to us. Thank you for sharing!

...I am an educator and I know how hard parents have to fight against "the system". Stay strong...It such an interesting, wonderful, difficult road you walk if your child is born and doesn't fit into that stereotypical "perfect" box.

notlost,

I enjoy your Proud Parents ship/group, and I wish well for your daughter's arm. I've been very successful in mitigating "fight" circumstances, and being a collaborator, working with them, establishing a strong parent/staff relationship in order to get their best effort, their honesty and their respect. Of course, when opinions differ, things do elevate, and a different process ir realized to solve it; I like having that always in my pocket to take out in order to be the best advocate for my son when the times warrant.

My son was born 6 weeks premature, under emergency duress, and my wife was toxemic upon delivery. I was signing more power of attorney forms and health writs, since I could have lost both of them that day; indeed, as you say, it was difficult when it's not the stereotypical birth. At times, I had to choose which bedside to stay at, and not know whether I'd selected the wrong one. In the end, I believe everybody survived for a reason, and someday we will realize this full potential, however great or small it is, and having experienced this, I cherish EVERY MOMENT with my wife and my son.

What a wonderful thread SM!!! My 4 yo. nephew has Down Syndrome and has had multiple heart surgeries due to his Ventricular defect. He is the strongest, sweetest most wonderful human being I have ever met and I couldn't love him more. He is my rock when things seem to not be going well I just think about my little superman and how much he's had to endure and overcome in his short life so far and it makes all my problems seem so small and inconsequential in comparison!!! And he has a smile that lights up the entire universe!!! Now I'm getting all mushy talking about him. He had his most recent heart surgery last month and is doing WONDERFUL now, besides a little pneumonia but he gets that often. He's my baby!!!

lmwwashington2

Those are indeed powerful words washington, and so very heartwarming, and so true; your words inspire me! You have a special nephew, and I bet he thinks that you're just as special. It is true that when you see your child struggle through things that most kids don't have a second thought about, it is quite difficult, and it certainly puts into perspective my struggles or difficulties that day or that moment. Inconsequential they are compared to this mysterious and confusing battle that he fights every day. I hope that your nephew does well, and that you continue to be there for each other.

To All:

These are such inspirational stories, and I'm so glad everybody who's posted here has come to share them or read them. You have already exceeded my expectations with the giving of yourselves and of your words, thoughts and time, and I hope that the momentum continues to touch others and bring forth more of this magic.

-Mang

P.S. I have an Autism Awareness Group/Ship, which essentially posts here. It's certainly not required, but if anybody is interested, here is the link: http://www.thefuselage.com/Threaded/showthread.php?t=40154

StickMang -- I'm sure that I am writing for everyone hear when I say that you have a gift with writing. I was touched to read your response to my post and to everyone else as well. Thanks!

To all in this thread...
My only personal experiences with children with autism comes from an educator's point of view. I'm currently in college to learn to be a teacher, and through that I've had practice periods in different schools and grades. Two of the pupils that I remember the best from my times teaching had autism, and I loved them both to bits. There's something special about a child who comes up to you, wraps his arms around you and says "I love you" because you've helped him with his spelling. I will never forget any of those boys.

Your children are treasures, and they are special. Not a bad special, that is not what I mean. All people are different and special in their own ways. I admire your strenght for your children, and I hope that I will be able to be a positive person in parents lives through my professional life as a teacher.

Thank you all for sharing your stories. They are true sources of inspiration.

Myha

Myha,

Thank you for stopping by to read and particpate. I've always enjoyed our previous interactions in several other threads & groups.

I live in a community with an outstanding autism program, and the teachers, therapists and educators have been of utmost import in helping lead l'il Mang toward a better future. We work as a team, and develop home-to-school and school-to-hom program elements and transitions to better coordinate and align activities. While I'm not a teaching professional, nor a therapist, they teach me techniques to strengthen his muscles, teach him and help him to re-channel his "behaviors" and anxieties.

The creataivity and thought in designing, executing and changing programs as they succeed, evolve or fail is amazing and as parents we participate in designing these, using our knowledge of him his learning habits, his styles, strengths, areas of need, fears and simply apply logic to meld with their experience and expertise on specific areas of teaching and therapy. I am indebted to these people who genuinely care about my son nearly as much as I do. :)

Similar to notlost,justexploring, you Myha take the educator's perspective into this issue, and your role as educator is of paramount importance. The school & home program elements of working with special needs kids is what truly makes a difference in their lives. I thank you Myha, and notlost for your tireless (and sometimes thankless) dedication, and to all of our teachers, therapists and educators for keeping in mind the words herein and the parents' perspective as you interface with and teach children of autism, learning delays or of other special needs. Based on what I've read with both of you, you have chosen professions well, and will indeed succeed.

Thank you for stopping in and participating.
-Mang

Mang.... do they have an Autism Awareness month? The Down Syndrome Assoc has October and we host several functions like the Buddy Walk. A large group of family, friends and supporters walk to raise money for important life services and awareness. Our Buddy Walk helps immensely, we get to know other family's going through the same/simalar things that we are and it creates a wonderful support system! Does the NAA do something similar? I found the NAA website and looked on it's calendar of events but couldn't find anything.

lmwwashington2,

Not to intrude, but April is Autism Awareness Month.

Thanks for the prompt response REB!

lmwwashington2,

April is indeed Autism Awareness month, and I do not recall any national organized events. Most of what I've seen occurs locally, and up here is usually conducted in the warmer months throughout the summer such as with walks, food fund raisers, golf tournaments, comedy benefits and the like. In the past, I've helped our school make Autism ribbons for the entire staff to wear on their lanyards so as to remember the importance of these students and their access to the same opportunities and successes as all students; gel bracelets were also quite popular.

-Mang

Thanks for the prompt response REB!

lmwwashington2,

April is indeed Autism Awareness month, and I do not recall any national organized events. Most of what I've seen occurs locally, and up here is usually conducted in the warmer months throughout the summer such as with walks, food fund raisers, golf tournaments, comedy benefits and the like. In the past, I've helped our school make Autism ribbons for the entire staff to wear on their lanyards so as to remember the importance of these students and their access to the same opportunities and successes as all students; gel bracelets were also quite popular.

-Mang

Stick,

Not to derail the conversation, but the same is fairly true for child abuse prevention as well. During the time that I chaired the local (now dead) child abuse prevention council we stayed within the county, making ribbons and putting information in the local paper, etc. However, and this is how we get back to autism awareness, Prevent Child Abuse America (http://www.preventchildabuse.org/) has State organizations such as Prevent Child Abuse Georgia (http://www.preventchildabusega.org/html/home.html). Whatever the national organization comes up with is filtered down to the States and from there to the local chapters, giving assistance where needed. I guess my question is this: why is it that Autism Awareness does not have a similar infastructure? I've done some small research and found that, in Georgia at least, there are three large chapters that deal with the cause, but nothing Statewide. I believe (and this is just the opinion of a neophyte in autism awareness advocacy) that such an infastructure would work wonders for this cause as well.

By the way, two of the three chapters in Georgia are The Northeast Georgia Chapter (http://negac-autsoc.tripod.com/) and The Greater Georgia Chapter (http://www.asaga.com/) if anyone from Georgia reads this and wishes to find information from areas near them.

P.S. You're welcome, Stick. Anything I can do to help keep this thread runnin'.

Good Job Stickmang for starting this thread!

I don't know anyone with autism, but my baby brother is 6 years old and has learning disabilities. He was a late in life child, my dad was 50 and my step-mom was 40, when they had him. He has speach problems and is a slow learner, but as I tell my step-mom, considering that he was a late in life child they are lucky that those are the only problems he has. He goes to speach therapy and had to repeat kindergarten, but he seems to be doing a lot better now. If only I could keep them from spoiling him so much. :unsure:

I also have a friend whoose son has down's syndrome. I participate in the Buddy Walk with her family and it is a great event.

Good luck to everyone out there. I can't even imagine what it's like to go through.

PhillyGirl,

my baby brother is 6 years old and has learning disabilities. He has speach problems and is a slow learner...He goes to speach therapy and had to repeat kindergarten, but he seems to be doing a lot better now. If only I could keep them from spoiling him so much. :unsure:. I can't even imagine what it's like to go through

Those things mentioned above are some of the very same things that autistic children face as well: speech delays, learning delays, repeating grades, amongst many others. You probably know the difficulties to teach the things to your brother that most kids pick up inherently. You probably see the frustration in him for not being able to keep up with classmates, or "being different". Perhaps you know more than you think!

You sound like a great big sister PhillyGirl. Just don't let your parents stop spoiling both of you, as long as its spoling you with love!!! :biggrin:

============

Inspiration, continued

I wanted to continue the story of Jason McElwaine, the child with autism who finally got to play basketball on his high school team, and thrilled his teammates, the crowd and his coaches and family...absolutely electric! It was such an inspirational story, and one that shows you what can be done when everybody is given an opportunity to try.

Here is an extension to the Jason McElwaine story where he meets The President! This also has a link to the original video of the ESPN report: http://sports.espn.go.com/sports/news/story?id=2368193

Thank you for participating in this forum!
-Mang

Hi All,

I'm usually a "lurker" but I was so excited to see this thread, I had to post! I am a Mom of four and two of my kids have Autism Spectrum disorders. We had a very long and tough road to diagnosis for our oldest. He was 13 before we could name his struggles. My 10 year old daughter was diagnosed this past year. As for the youngest, we are still observing:undecide: My 12 yods is "neuro-typical" and has his own struggles trying to relate to his siblings. Our family is amazing and challenging. I struggle with grief: unmet expectations for my kids, anxiety over their futures, and just the everyday hassles of trying to live with people with special needs. On the other hand, I am amazed and thrilled at my kids' accomplishments, their courage, their persistence, their creativity and their depth.

My oldest (now 15) was homeschooled K thru 8th grade which worked very well for him. He tried mainstream school for 6 months, but because of sensory issues, social issues, processing issues, he just could not flourish in a classroom setting even though he had an IEP and lots of accomodations. This year he does online school (10th grade) at home and it has been great. He also has therapy 5 days a week, so lots of running around with him!

My daughter is in a charter school with small class sizes and lots of individual attention, so this has worked out well for her. But it is hard to navigate the system and get what your kids need. I applaud all of us parents for sticking with it and becoming the expert advocates our kids need! I have had to push many times to get what we need with the schools, mental health practioners, psychiatrists, therpists, etc. but it has all been worth it!

I have enjoyed reading your posts, thanks Mang, for starting this thread (I've been a "Q.U.E.S.T. Lurker" for a long time, so that's how I found this thread). My good thoughts and prayers are with everyone! Thanks to all for sharing!

MB

Miss Becky,

Thank you for sharing your story with us. It takes special people to face autism with such positivity, and you do this with more than one chilld, whilst supporting others and successfully parenting and even schooling them; that is simply amazing.

I've quickly learned that success is not what society places upon us, or in our case what family members also try to foist on us. We know that success some days means asking a simple question, or struggling to independently conduct tasks that most children can execute without even thinking and other days it can be something grand.

As to the anxieties you mention, this seems to be an ongoing struggle for me as well. Each gain often comes with another trepidation, and as he gets older, the issues seem to become greater, and of grander scope. It's not just can he grip scissors properly anymore, but now it's whether he can learn how to communicate appropriately with peers, or soon whether he will gain the requisite skills to hold a job on his own, or have the life skills to gain some measure of independence. Some days the answers are an enthusiastic "yes", others are a "no", in a sinusoidal wave of success.

Despite any trepidation, we remain incredibly blessed to have him, and in reflection, we feel very fortunate, as we know that things could be so much worse or so much more difficult. We will always have a place in our home for him, and we know that we dedicate ourselves to helping make his life better each day than the day before, so we hope that in the long run, the daily difficulties will be small bumps that will dampen in the bigger picture.

We all know the incredible frustrations and the utter joy that we face as parents of autism, and know that our children face even more difficulties. I am proud of all whom, like you, have given such love and such dedicated and positive impact on their children's or other's lives, especially those of autism and special needs. Your advocacy for your children, and all of the incredible work that you speak of is an indication of what a great person that you are; I'm sure your kids love you dearly.

Here is the Autism Awareness Group that I've created here at The Fuselage. It's certainly not mandatory to join in order to participate here, I'm just offering the link to you or to anybody interested:
http://www.thefuselage.com/Threaded/showthread.php?p=849310#post849310

I'm so glad that we've sailed the same ship in Q.U.E.S.T. There are so many open-minded, vastly intelligent and empathetic individuals therein whom have been very supportive of my autism discussions. I hope that we interact again here, there and elsewhere!

-Mang

Mang

We’ve talked about my eldest son and his struggles with learning disabilities and ADD, but I haven’t talked about my 12 yr old that has Aspergers. I’ve just learned about this syndrome and have been trying to research more into it while trying to find the best help for him. School is such an issue right now since he’s started Jr. High. The social dysfunction associated with Aspergers is now becoming an issue.

Working with the school is becoming more and more important as individual help for children like him start to decrease and expectations of individual responsibility start falling more on the student’s shoulders. This is where the school failed for my eldest and I’m fighting to not let my 12 yr old fall through the same cracks in the system.

http://www.aspergers.com/ I’ve been reading a lot from this site, but anybody that can provide more information I would appreciate the reading material.

I do have to giggle at times because of his ability to absorb information. The kid is a walking encyclopedia when it comes to science and nature topics. He continually watches Discovery channel and History channel programs, unfortunately most kids his age don’t want to converse with him about these subjects and would rather talk about the latest fad or “cool” thing that is going on at the time and he could care less about those type of subjects. He’s quite the individual and doesn’t follow the crowd. I’m hoping that part of his personality doesn’t change with peer pressure.

Thank you for starting this thread. If it’s one thing I’ve learned it’s that parents of special need children need just as much support as the child himself.

EarlhamGirl,

It sounds like you are a wonderful sister, and I bet you understand her language well. My son could not communicate for years, with significant language delays, and he communicated non-verbally, and eventually in his own language as well. We understood a few of his words, and eventually, with help, therapy, lots of practice and patience, he's become more communicative, though still quite delayed. Sometimes the more difficult part is to teach family, friends and those around you, since they slap "typical" expectations to them, end expect them to perform like other kids. It's wonderful to see the small successes, the gains and to watch the verbal transformation, but the best is to see the smile when your child can finally get you to understand that they want a cup of water, and the joy that brings to him and to us. Thank you for sharing!

I understand exactly what you mean in reagrds to learning the language of someone with autism. I was four when my sister was born. So, I have known her language for many years. It can be frustrating when some doesn't understand her way of speaking. So, sometimes you have to be the "interpreter" so to speak. A few years ago, my sister started using the PECS (Picture Exchange Communication System) to communicte with us. She nos has much less trouble telling us her needs and wants. It makes all of us, including my sister, very happy. Thanks again for sharing this amazing thread with all of us! :biggrin: (We're like our own little support group!)

Mang
...my 12 yr old that has Aspergers...School is such an issue right now since he’s started Jr. High. The social dysfunction associated with Aspergers is now becoming an issue.

Working with the school is becoming more and more important...individual responsibility start falling more on the student’s shoulders...This is where the school failed for my eldest and I’m fighting to not let my 12 yr old fall through the same cracks in the system.

http://www.aspergers.com/ I’ve been reading a lot from this site, but anybody that can provide more information I would appreciate the reading material.

The kid is a walking encyclopedia when it comes to science and nature topics...most kids his age don’t want to converse with him about these subjects and would rather talk about the latest fad or “cool” thing that is going on at the time and he could care less about those type of subjects...He’s quite the individual and doesn’t follow the crowd. I’m hoping that part of his personality doesn’t change with peer pressure.

Thank you for starting this thread. If it’s one thing I’ve learned it’s that parents of special need children need just as much support as the child himself.

cin,

I've always enjoyed our conversations, and I'm glad that you'd share even more about your 12-yr. old boy.

I'm less experienced with Aspergers, but from my contact with children and parents, it seems that language was not the issue with Asperger's kids as it was with l'il Mang, and Aspergers kids tend to be incredibly intelligent on certain topics and overall have higher cognitive function in general. l'il Mang was diagnosed quite early due to lack of language, and this seems not to exist in the Aspergers kids that I know, though I shouldn't generalize.

I fully understand the social interactions. At l'il Mang's age, kids begin to become judgemental of outward appearances in social situations (on the bus, playground, lunch table, etc.), and we have to practice and role play with l'il Mang to demonstrate appropriate interactions. This makes it so practiced, and lacking spontenaity, but we continue. We too like to foster his individuality since we empathize and understand it like no other can. His is currently into Food Network! He loves to watch, and wants to try to make different foods. I hope this is empowering to him, and a place where he can demonstrate atypical craetivity, or at least interest.

Like your son, l'il Mang cannot fond commonality in discussion of any topic of preference. No other kids his age like Rachel Ray, Emeril, Mario Batali or Giada, so we've had to ask fora list of "pop culture topics" that he might build an interest just so that he can enter a conversation with another student and hope for a positive interaction. Star Wars is big at school, and l'il Mang loves that now, since they actually buillt it into a home program so that he has a springboard to an interaction. Unfortunately, his perseveration makes him focus on only 1 or 2 elements and overtalk them, causing other kids discomfort and lack of patience. He lacks the abstract thining to read non-verbal cues when they're annoyed. While inconsistent, he sometimes demonstrates echolalia & stereotopy making it an awkward social situation with other kids who think he simply "looks weird".

The difference with l'il Mang and the Aspergers kids that I iknow, in addition to the language difference, seems to revolve around cognition and general academic knowledge and aptitude. There are always glimmers of such intelligent in there that just seem to get jumbled in translation. But the Aspergers kids that I've seen seem to have savant intelligence on certain topics, and excellent aptitude overall.

My l'il Mang actually has a "big buddy" who is a lovely girl, 2 years his senior with Aspergers who reads to him in class, and helps him in class with homework on an infrequent basis. It's a wonderful program for those more advanced in certain areas to help those less advanced, and perhaps vice versa. She is absolutely sweet, and SOOOO smart! It seems that she hides her "awrkwardness" well, or has been coached to work through such situations.

I empathize cin, and I wish you well. Make sure that you work with your special education department to develop home programs should they decide to phase them out, as it sounds like they are trying to do. They should be able to teeach you the strategies rather than just "cut you off" from the program. And don't forget that your last IEP governs until you sign another one, so maybe that can buy you time/leverage to renegotiate services that are needed.

I applaud you for the great works that you do, for your passion and interest and for the great person that I know you are in talking and in reading your stories. Your kids are blessed, as are we for your sharing.

-Mang
100%
I understand exactly what you mean in reagrds to learning the language of someone with autism. I was four when my sister was born. So, I have known her language for many years. It can be frustrating when some doesn't understand her way of speaking. So, sometimes you have to be the "interpreter" so to speak. A few years ago, my sister started using the PECS (Picture Exchange Communication System) to communicte with us. She nos has much less trouble telling us her needs and wants. It makes all of us, including my sister, very happy. Thanks again for sharing this amazing thread with all of us! :biggrin: (We're like our own little support group!)

Indeed EarlhamGirl.

We became so attuned to l'il Mang's forms of communicating, that we actually could communicate for him, whereas nobody else understood his words, pointing, actions or sounds. You talk about frustration with somebody not understanding the non-verbal language,and we found that our largest offenders were family members who tried so aggressively to grill him and "teach" him to be "normal", that they not only frustrated him, but they forever lost perspective on him, to learn to get to know him as he is, while we help him learn what other kids know over time. I can;t tell you the damage that their perspective has caused...

l'il Mang is a visual leaner and visual thinker, lacking asbtract notions at the moment, so pictures were a wonderful starting point in tandem with serious speech therapy. Because of lack of visual motor planning, we were not too successful in sign language, but we started it in parallel in case that he didn't pick up spoken language, but it turned out to be unecessary.

Similar to PECs, l'il Mang conveyed his thoughts and needs by training to use a pictoral models, sequences and picture boards (pickup a glass index card for a drink, a picture of a toy to play, etc.). Unlike PECs however, he was also taught ABA and roleplay to practice appropriate responses in a structured (some say rote) exchange as well.

As you say, the most difficult things are understanding wants and needs, and the abstract topics. What is more concerning are illnesses and pains. l'il Mang could have had a fever and we'd not understand it, or a a stomach ache, or a bruise.; health issues were problmatic and scary in fact. For example, if he had strep throat or an ear infection, he wouldn't complain. We'd have to be hypersensitive in every observation to look for a tugging of the ear, or listen to him swallow his sippy cup.

Thandk you for the compliment, but the sharing comes from you, and my hope was that we'd share stories and need for support together.

I am just so trhankful by the response from all of you!
-Mang

Thank you for starting this thread. If it’s one thing I’ve learned it’s that parents of special need children need just as much support as the child himself.


I second that !

Just a quick story about something my son did. He is going on 5 and was diagnosed with Autism at 2 1/2.

My mother has been through quite a tough time the past three years ~ She lost a grandson to suicide, a daughter from a sudden heart attack and a husband of 50 years to a long struggle with a debilitating stroke. My son is what she gets up each day for. She watches him a twice a week for me so I can work. She has taught him to be a wiz on the computer. His social and language skills are the things he is most lacking.

Well ~ my mom turned 70 last week and it was just us three in the evening with a cake. My son sat on her lap and sang her the complete happy birthday song with the appropriate "Happy Birthday Dear Grammy" right along in it without prompting or even us singing along.

I know this will sound ridiculous to most people whose 5 yr old children pepper them with questions day in and day out but for us it was great!
It's hard to share these little acheivements with most because they don't understand ~ so yes it is nice to talk to others who have similar ways of life. Because it truly is a way of life - it effects everything we do and everything we are as parents.

God gives the special needs children to very special parents. Hang in there everyone. We are on the roller coaster and everyone else is on the ferris wheel. I think we get a much more rewarding ride. Even though I hate roller coasters:smile:

C.

C, I know you were proud of your little guy singing Happy Birthday! That is very cool! It is so encouraging to get an indication that your son is understanding and he was able to communicate it. Awesome. (Hugs to your mom, too! She's had a tough ride.)

My son has Aspergers (and my daughter is also on the spectrum) and he has always been able to talk, but his processing speed is so slow that it sometimes takes him a long time to get thoughts out. Thank goodness for computers! He types great! And indications that he is aware of what's going on around him and how others might feel is a grand event. I cherish those moments!

And as for the roller coaster, I heard someone say that "Life is a roller coaster, but thankfully God has me firmly strapped in!" Enjoy the ride!

MB

Indeed EarlhamGirl.

We became so attuned to l'il Mang's forms of communicating, that we actually could communicate for him, whereas nobody else understood his words, pointing, actions or sounds. You talk about frustration with somebody not understanding the non-verbal language,and we found that our largest offenders were family members who tried so aggressively to grill him and "teach" him to be "normal", that they not only frustrated him, but they forever lost perspective on him, to learn to get to know him as he is, while we help him learn what other kids know over time. I can;t tell you the damage that their perspective has caused...



My family has always loved and accepted my sister for who she is. No one wants to "Fix" her or anything like that. The some of the problems we have are from older people who seem to be unfamiliar or afraid of disabilities. I feel like the later generations have been raised with much more understanding towards people with disabilities than some other generations have. Is this just from my experiences, or have any of you experienced this also? :rolleyes:

My family has always loved and accepted my sister for who she is. No one wants to "Fix" her or anything like that. The some of the problems we have are from older people who seem to be unfamiliar or afraid of disabilities. I feel like the later generations have been raised with much more understanding towards people with disabilities than some other generations have. Is this just from my experiences, or have any of you experienced this also?

EarlhamGirl,

I would definitely agree with you. Growing up with a disability myself, I've felt that in many ways people of my generation and the younger generations are much more open and accepting. Sometimes they're a little too familiar, but that's okay as well. I'd rather people ask what's on their mind than be fearful of asking.

EarlhamGirl,

I would definitely agree with you. Growing up with a disability myself, I've felt that in many ways people of my generation and the younger generations are much more open and accepting. Sometimes they're a little too familiar, but that's okay as well. I'd rather people ask what's on their mind than be fearful of asking.

I definitely agree with you there JohnnyReb! People of our generation seem to be more accepting of others, but then again other people from the same generation like to use the word "retard" in an inappropriate way. That really bugs me! :mad:

I definitely agree with you there JohnnyReb! People of our generation seem to be more accepting of others, but then again other people from the same generation like to use the word "retard" in an inappropriate way. That really bugs me! :mad:

EarlhamGirl and REB,

As I see it, you are indeed correct about today's society and its collective views on special needs. It took quite a bit of effort to "unteach" our families the typical stigma associated with children of special needs...sub-separate classroooms...no learning...etc.

And I couldn't agree more that the unfortunate mis-use of the clinical term "retarded" to be so cavalierly tossed about. Of course, there is mental retardation, and people thusly afflicted, but it has a specific meaning and should not be thrown about as a general term, or worse, as mocking vernacular. When I hear somebody say "you're retarded" or "what a retard" or "that was retarded", and it has nothing to do with clinical regression or classification of mental retardation, I have sometimes let my thoughts be known.

I've been accused of being hypersensitive or "PC" or unaware that "retarded" is general vernacular. Well, their child probably hasn't been called "Special Ed" by fearful parents, or hasn't been ostracized by other students for being different, or walked off the school bus asking why everybody laughs when he talks about something or does something.

We all have our "hot buttons", and we are all hypersensitive to that which affects us most, but that one to me is truly a shame in my book.

-Mang

I am devastated when people...upon seeing Max have an episode or listening him hum and sing or slap himself..ask me ..."What is wrong with him..?" I am a rather large man with a wealth of training in the defensive arts and I feel so inclined to grab a nerve hold on these people and ask them what is wrong with them as they are screaming, twitching and acting silly too...

The stigma is there...it seems such a broad brush that every child with differences is called retarded...not the case.

Maxie has a genius IQ...his autism has regressed his social skills to that of a four or five year old...he is light years ahead of when he was five when he didn't speak or acknowledge the world around him...he is one of the greatest things to happen to me as he has taught me about being unselfish...he has no prejudices in him...no racial hatred...no preconcived notions about anyone...all he sees is a potential friend...I wish we could all see the world the way he does...

On another topic..I just ordered Juice Plus Gummies for him to get him more nutrition as he is on a wheat and casin free diet..has anyone used these before?? How have they worked?? They came recommended from his doctor...

I know this will sound ridiculous to most people whose 5 yr old children pepper them with questions day in and day out but for us it was great!
It's hard to share these little acheivements with most because they don't understand ~ so yes it is nice to talk to others who have similar ways of life. Because it truly is a way of life - it effects everything we do and everything we are as parents.

God gives the special needs children to very special parents. Hang in there everyone. We are on the roller coaster and everyone else is on the ferris wheel. I think we get a much more rewarding ride. Even though I hate roller coasters:smile:

C.

Ckuklane,

That is wonderful! To me, it is the small gains, those brief and subtle things that make all of the hard work and dedication so worth it. Have I been on a romantic weekend, or went out on a date, or even spent 1 moment alone with my wife in the last 8 years? No, but when I get those smiles, or l'il Mang has a realization, or hits a milestone, understands a sentence when reading himself, helps clear his plate, or gives one of those spontaneous hugs, any achievement, great or small, of any type, it is ALL worth it! You can create those alone-time moments if you are willing to sacrifice some sleep, but you can never create those wonderful moments from your child. And I want to experience every one of them, even if they come with 5 correspondingly difficult ones.

You bring up that great point about the "little achievement", helping us all to take perspective on what truly is important in life; I thank you for sharing that...and the birthday song! :biggrin: While I don't know what it's like to have a child without special needs, I think all parents face challenges, but your roller coaster metaphor I believe is so appropriate and accurate for parents of kids with special needs. I agree wholeheartedly that we were chosen for a reason, that we have something incrementally necessary for them to make the most of who they are, and you should all be commended for your selfless devotion, unending love and your perspective.

-Mang

HELP!

After having lived for one year in the same dorm as a girl with Williams syndrome, I've become sensitive to choice of words concerning people with disabilities, and I am asking you now as a non-native English speaker,
What words are the correct ones to use when talking about autism, Down's syndrome, physical challenges and stuff like that. Please enlighten me. I really don't want to seem rude, but I realise that my vocabulary doesn't tell me what is PC or not...

I am still amazed about the stories that you tell, and it's wonderful that you want to share them. Thank you!

Myha

HELP!

After having lived for one year in the same dorm as a girl with Williams syndrome, I've become sensitive to choice of words concerning people with disabilities, and I am asking you now as a non-native English speaker,
What words are the correct ones to use when talking about autism, Down's syndrome, physical challenges and stuff like that. Please enlighten me. I really don't want to seem rude, but I realise that my vocabulary doesn't tell me what is PC or not...

I am still amazed about the stories that you tell, and it's wonderful that you want to share them. Thank you!

Myha

Myha,

Hey darlin'. I think by now you know my general feelings on PC terminology. It's my opinion (and it's only an opinion) that you should just speak openly with your dorm-mate. Don't try to hide behind politically correct words. Ask her what terms she wants you to use and use those terms.

I am devastated when people...upon seeing Max have an episode or listening him hum and sing or slap himself..ask me ..."What is wrong with him..?" I am a rather large man with a wealth of training in the defensive arts and I feel so inclined to grab a nerve hold on these people and ask them what is wrong with them as they are screaming, twitching and acting silly too...

I know exactly what you mean, BaileysDad! Sometimes people are just insensitive about disabilities in general and it can be frustrating. My sister and I are really close. So, when someone says something or gives "The Look," I don't usually react well. For example, when a older lady gave us a hard time on vacation, she got the patent "drop dead look." You never should get between a sister and her better half! :biggrin: Sometimes you just want to say "What is YOUR Problem?!?!"


EarlhamGirl and REB,

As I see it, you are indeed correct about today's society and its collective views on special needs. It took quite a bit of effort to "unteach" our families the typical stigma associated with children of special needs...sub-separate classroooms...no learning...etc.

And I couldn't agree more that the unfortunate mis-use of the clinical term "retarded" to be so cavalierly tossed about. Of course, there is mental retardation, and people thusly afflicted, but it has a specific meaning and should not be thrown about as a general term, or worse, as mocking vernacular. When I hear somebody say "you're retarded" or "what a retard" or "that was retarded", and it has nothing to do with clinical regression or classification of mental retardation, I have sometimes let my thoughts be known.

I've been accused of being hypersensitive or "PC" or unaware that "retarded" is general vernacular. Well, their child probably hasn't been called "Special Ed" by fearful parents, or hasn't been ostracized by other students for being different, or walked off the school bus asking why everybody laughs when he talks about something or does something.

We all have our "hot buttons", and we are all hypersensitive to that which affects us most, but that one to me is truly a shame in my book.

-Mang

That word really bothers me! I find something completely ignorant in the way our generation seems to toss it around so unsignificantly. To some people that word is truly offensive. I don't think there is ever an appropriate time to use that word!

Mang and others, do you find the the R word as offensive as the S word or F word? :undecide:

Hi all. I've just found this thread and the other one started by Mang.

I have a 15 year old son diagnosed with Asperger Syndrome/PDD. He is pretty high functioning and because of this wasn't diagnosed until 6 1/2. I posted more details in the A.A.G. thread about my young man.

While reading through this thread I noticed that someone asked about what type of state-wide or national events might be taking place during April, Autism Awareness Month. Keep a watch out, Bob Wright (CEO of NBC) and his wife, who have an autistic grandson, have appeared on the Today Show and CNBC to launch new Public Service Messages that feature autism awareness. The one I saw was of a mother carefully buckling her toddler into a carseat. I think the voiceover is done by Marrisa Hargatay (cop show on NBC, can't remember its name) who says that the chances of a child being killed in a fatal car accident are 1 in 23,000. The chances of a child being diagnosed with Autism are 1 in 166. If you go to www.autismspeaks.org (http://www.autismspeaks.org) you can see all the TV spots and hear all the radio spots. They are quite good. I'm glad to see autism getting a bit more exposure. I personally think that the country will be in shock when the onslaught of children born in the 90's starts to come of age and become eligible for certain government programs such as the division of vocational rehabilitation, who will be the agency that helps my son get a job once he turns 21 and is finished with school. Hopefully with an advocate like Bob Wright, autism will be more in the public eye. We can only hope.

Arlene,

I have an Autism Speaks reference. I have a friend that loves Build-a-Bear Workshop, and I believe that in deference to April as Autism Awareness Month, Build-a-Bear has teamed up with Autism Speaks to have special bear for sale with partial proceeds going to Autism Speaks. Personally, I'd rather put money directly into the organization, but I was going to buy a bear anyway, so maybe I'll make it their Autsim bear. I'll get a link later.

ETA: Here's the link for the Autism Speaks Build a Bear: Build-A-Bear Workshop Nikki's Bear II for Autism Speaks (http://www.buildabear.com/shop/productdetail.aspx?CallingPage=Shop%2fSearchResult s.aspx&ProductSKU=5757)

I also know that NBC and MSNBC had a weeklong special on autism last summer, likely due to the Bob Wright and Autism Speaks connection. Here's a link for this: MSNBC/NBC Special Section on Autism (http://www.msnbc.msn.com/id/6844737/)

-Mang

Sometimes people are just insensitive about disabilities in general and it can be frustrating. ...[snip]... For example, when a older lady gave us a hard time on vacation, she got the patent "drop dead look." Sometimes you just want to say "What is YOUR Problem?!?!"

EarlhamGirl,

I too show my emotions, so when somebody says something I don't like, they see it. I can apply tact to certain situations as warranted, but I tend to avoid "poker face" and employ "grimace face"; it's simply my nature, for good or for ill.

Mang and others, do you find the the R word as offensive as the S word or F word? :undecide:

I think REB has it right, word usage really is a personal issue, and people should say what they feel is right. Personally, I find the word 'retarded' highly offensive when used inappropriately or out of proper context; to me it is as offensive, if not moreso, than any imagineable curse word when used thusly. I know that it is "commonplace" to use this word pejoratively, but that doesn't mean that I need to accept it, condone it or try not to make others aware of my hangup. Here's one time where I feel that foisting my persective can be appropriate, not necessarily to "correct" somebody else, but to not allow myself to be complicit with its usage by allowing it to be stated without my retort. But that is simply my hangup, not others, and I can't expect the world to change for me, but I can expect to say what I feel through word, deed and "grimace face". People can call me hypersensitive to the word as improperly used, but I am deeply offended by its misuse.

Bob Wright (CEO of NBC) and his wife, who have an autistic grandson, have appeared on the Today Show and CNBC to launch new Public Service Messages that feature autism awareness. Hopefully with an advocate like Bob Wright, autism will be more in the public eye. We can only hope.

Here's a link to NBC & MSNBC's special coverage on Autism from July 2005: MSNBC/NBC Special Section on Autism (http://www.msnbc.msn.com/id/6844737/)

-Mang

But that is simply my hangup, not others, and I can't expect the world to change for me, but I can expect to say what I feel through word, deed and "grimace face". People can call me hypersensitive to the word as improperly used, but I am deeply offended by its misuse.

Hey Mang,

We all have our "hangups". I don't really like to think of them as such, though. I tend to believe that we are all just very passionate individuals about certain things.

EarlhamGirl,

I think REB has it right, word usage really is a personal issue, and people should say what they feel is right. Personally, I find the word 'retarded' highly offensive when used inappropriately or out of proper context; to me it is as offensive, if not moreso, than any imagineable curse word when used thusly. I know that it is "commonplace" to use this word pejoratively, but that doesn't mean that I need to accept it, condone it or try not to make others aware of my hangup.

-Mang

I agree that is a matter of opinion, but to me that word is completely offensive when used incorrectly! :mad:

I happen to be as PC as they come. I just try to say something like "I'm sorry, we don't use that term anymore." I find that most people, no matter how they really feel about what I said, will apologize. Sometimes they will do it with a snooty laugh but I ignore that part.

I want to share a story.

One day while shopping for a suit shirt for my son (never fun), he was having a fit. He was 7yrs old on the floor near the dressing room, he was making noise and kicking his feet. My 3 year old daughter was trying to get his attention. She bent over him, wiggled her finger and said "get up, get up, I'm tired of your cwap." Her trouble with "s" and "r" are long since gone (she's 7 now), but that day she made me smile and it was a whole bunch easier to get him off the floor.

IMPORTANT ANNOUNCEMENT:

The Moderators on The Fuselage are always working to maintain continuity on the boards, and the rules for Group/Ship posting have changed since I created the group. We are no longer required to have separate thread in the Off-Topic discussion location to discuss our autism, learning disabilities and special needs topics, we can discuss this directly in the Group/Ship thread; that thread is not just for issuing membership numbers anymore!

In the coming days, the Moderators will be locking this thread into a read-only format. The Autism Awareness Group/Ship in the Not LOST section will become the one location to continue our activity for autism awareness, and awareness of learning delays and special needs in general.

Here is the Autism Awareness Group link in the Not LOST section for future discussion:

http://www.thefuselage.com/Threaded/showthread.php?t=40154

Thank you for your continued participation and your cooperation in the coming days. I look forward to your continued inspiration in the group/ship thread!

-Mang

Herk,

Thank you again for your participation, previously in PM, and here in the discussion thread. I love to hear stories of what all of you face everyday, whether to share your joys, or look for advice in difficulty. It is often difficult for other parents to understand that this is not a matter of a "brat" or a "spoiled punk" or "attributable to terrible parenting". I am proud of your resolve in handling the situation so well...and the most precious things come from the mouths of children!

-Mang

locking this thread up for the above stated reasons... here is the link to the Autism Awareness Group (AAG) in the Not Lost sub-forum: http://www.thefuselage.com/Threaded/showthread.php?t=40154

i'll actually pin this thread up for a few days as this is a very important topic for discussion, just to make sure all of you know where to go and wonder why this was closed...