Find Out How to Get Support

OK I've got a bunch of modest friends. Kudos to you Marla for posting a comment!! You get a big fat mwah from me!!!! Pass it on with pride and love (don't take the easy way like I did...)

Elissa and I have many crossover readers but I want to post this here to get additional feedback. Hop over to Elissa's post and post your comment. I'm going to quote here here for my journaling purposes:

From Managing Autism - A Personal View:

I mentioned in a post a couple of days ago, that my recent search for help and advice with Jack had people asking me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff…..

A friend of mine spoke to me recently about the troubles that she was facing with people close to her - that they were insensitive to her and her child in relation to her child’s autism. She was becoming increasingly upset with the thoughtless remarks, and was at a loss as to what to do and how to approach the issue with these people… particularly when many of the insensitivities were displayed in public and she didn’t want to cause any problems between herself and these people…..

And I posted a while ago on a topic that many parents of children with autism face - that of being judged by others, and the grief of self judgement.

So all of this has had me thinking… when times are difficult and especially challenging with our children, when people are insensitive to our needs and our children’s needs, and when we’re going through the times of self-judgement and judgement from others - where do we go for support, and who do we find support from…?

… and then how do we deal with the unsupportive influences in our lives…?

I am very fortunate to have my parents who are very supportive of Jack’s needs and our needs as a family. I also rely heavily on my blogging friends for a support network of others who are facing similar things in their lives - and who are very generous with advice and support! I visit an online forum when I can, and I do have a couple of friends who I can call on for a ‘chat’ when things get tough and I need a friendly understanding face.

And of course, there are a couple of people close to us who really have no interest in recognising Jack’s Autism Spectrum Disorder, or maybe they do recognise it, but they just don’t stop to think that perhaps their thoughts and actions (or lack of thought and action) are hurtful and unsupportive…

But where else does the support come from?

Some of the professionals and therapists we have worked with over time have been incredibly supportive - both practically speaking and from an emotional aspect as well…

… but what do people do, and where do people go when they have little support around them?

… and how do people handle others around them who are totally insensitive… surely there must be a way to deal with the thoughtless remarks whilst still maintaining some sort of relationship with people.

I’d really love to hear people’s thoughts and ideas on this… for myself, for my friend, and for all of us…

… after all, we all need support.

I had a strong reaction to the following comments:

Marita Says:
"The other problem is one sister-in-law and her husband who can not understand and think I am over reacting and there is nothing wrong. I emailed all our family when Heidi got into Kalparrin Early Intervention to celebrate our great news. Problem SIL reply was “and this is good?”."

Casdok Says:
"As to insensitive remarks, you do grow a thick skin. But sometimes it isnt enough."

Marla Says:
"We have lost lots of friends and I would say that visually M does not appear to have that many difficulties, at first. That could be why many friends just don’t get it. Over time they don’t want to hear about it and it really upsets me when they don’t offer any supportive words or go on and on about every little achievement their children are making and then act bored when I talk about M.

But, complaining does not help the situation. I guess I have found it is easier to let friends go and distance from family that just does not get it. I don’t have the energy anymore to put up with dumb comments."

Lou Says:
"And now Zach is in a school where they are ALL geeks, all brilliant - all special. So he doesn’t stand out like a sore thumb anymore. He fits in. And he has blossomed and prospered. Of all of the issues and people he has encountered in his life, it has been his contemporaries who have caused him the most bother. And now that he is in an environment where his contemporaries are just as blissfully unaware of their surroundings as he is - they don’t look for the ‘oddball’, single him out, verbally, emotionally and physically abuse him - he feels safe to be himself."

And I just love Sheri's attitude that she has learned to develop. I can relate to her comment in nearly every way.

Click here to view all of the responses thus far. I've only read the first 6 as of right now, as that is all there is but I suspect there will be more because this is an issue that truly needs addressing. You may not have a child with ASD, but maybe ADHD or some special needs. Where do you get your support?

Victory!

Thank you to everyone who signed the online petition!!!

From ASAN:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center's website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"

Regards,
Ari Ne'eman
The Autistic Self Advocacy Network, President
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

That's what friends are for...

I met a lady just last night at our sunday school class's Christmas Party whose 5yo son was told that he was probably on the spectrum but they weren't going to diagnose him yet (of course not because that might cost the school money), and all I could think to tell her was "you need my network of friends." Thanks to Elissa at Managing Autism who sent me this award, or acknowledgment rather. I'm very flattered and honored as helping others via my experiences is something that is important for me to pass on because of what I have gained from everyone. Virtual or not, you guys give me so much support, more than I could ever imagine having. And if I may sound a little self-centered, just knowing that people visit my blog and pay attention to what I have to say is sometimes enough to get me through a woe-is-me day. So I would like to acknowledge the following people in my "colorful circle of friends" who have shared with me, taught me something profound, and helped lift the fog:

Elissa at Managing Autism
Casdok at Mother of Shrek
Jen at Jen's Blot
Karen at Beyond Understanding
Tulip Mom
Mandolin Mom
John at Look Me in the Eye
Bonnie at Coffee Autism Faith Explored
Maddy at Whitterer on Autism
Niksmom at Maternal Instincts
Marla
Gwen at Gwendolyn's Gifts
Kara
Susan at I Run for My Life
David (my big bro - where I learned the rules of the Big Brother Rites, but I love you anyway!)
The Hub (last but not least, my partner in our adventure of life - today is our 11.5 anniversary)

Most of the links are on my sidebar blogroll, if you are not and would like to be added please let me know! (I'm totally getting out of the Linking Test)

I know there are other people who read my blog, but either are not bloggers themselves or do not comment and I do want to acknowledge you too, whoever and wherever you are! (I have Google Analytics so I know you exist! Cue: Mischievous Laugh). Leave a comment here so I can properly thank you unless you are a "lurker" and like it to stay that way, which is fine too!

Oh...Fanks...

It has felt like Saturday the last 2 days.....and it isn't even Saturday yet.

When you don't have company for the holidays, sometimes you forget that it is the holidays. Even the AP went to Washington DC for vacation, so it was just the 4 of us. So sorry that I didn't get to show my thanks and gratitude to everyone that is important in my life, The Sister on the West Coast, The Brother on the East Coast, The Dad in the Far East, and The Mom on her way to the Far East for their annual Medical Mission Trip. This also includes all my readers and especially those who comment. You truly mean more to me than you may ever know. Thanks for the support, advice, and fellowship. I look forward to your thoughts on a daily basis. As The Younger would say (when we fulfill a request), "Oh....Fanks!"

Wednesday evening we went to the Fantasy of Trees. I'll have a slideshow of that on our Picasa site and on the sidebar once I have them all downloaded from the 3 cameras we had there. We did wait in line to see Santa...we hadn't done that since The Elder was 2 himself and he did NOT like it. As a matter of fact we keep that picture of him in distress on the man's lap on the oven with a magnetic frame. I don't know why really, I guess we just never took it down. Now the kids don't really get the whole Santa bit. We have been kind of indifferent about the concept. We don't keep Santa from them, we just don't make a great big deal about it. So when I asked if they wanted to get their picture taken with Santa, I knew The Younger was completely clueless to what he was actually agreeing to do. We stood in line anyway, juuuuust in case we could pull it off. They did pretty good standing in line considering they are 2 and 4 and the line was slow. The Hub was standing by with his camera to snap their picture so we didn't have to buy one. (That was legitimate, they were actually allowing personal photographers, but had their own photographer in case we wanted to buy.) Well, as we were waiting in line as the next one up, one's of Santa's "elves" (bless her heart) in an attempt to get the kids excited, may have just triggered the meltdown. It was 20 questions in 20 seconds, "What's your name? how old are you? what do you want for Christmas? are you ready to get your picture? are you excited about Santa?......" The Elder just looked away and collapsed into a little puddle on the floor right then and there. It was a quiet meltdown thank the Lord. But then there was The Younger, very vocal and very loud. He took one look at Santa and the whole convention center knew that he was NOT happy and there was NO way he was going to get even CLOSE to that skeerwy red man. But I really wanted to get their picture taken since we had 1) waited in line that long with success (up to that point) 2) dressed them so adorably in the same "Mister Roger's" sweaters and 3) we didn't have an appointment to get official Christmas pictures taken in time for Christmas.

The Solution? Me and The Hub had to get in the picture and hold them in our laps. You can tell we were not expecting to be a part of a portrait that night --- we usually like to coordinate a little better (and use a hairbrush). But hey, we got it and it has a great story behind it. The Younger is exhibiting his nervous tic of picking at his fingertips (or someone's fingertips). The Elder was actually OK, and gave Santa a high five before we left, I think he was just overwhelmed with the elf. The Younger....just not happy all around.


Thanksgiving Day, The Hub and I left the house at 6:30am for the annual Autumnfest 8K. I haven't run it since 2003 when The Elder was born, but have volunteered every year since then in honor of my "Papa" who passed away in 2000. The Hub was assigned registration so we were there early. I was assigned the finishline, so I was recruited to play chef for some food prepping for post race munching and then ended up having to take over with Registration too because there were sooo many day-of-race registrants that The Hub might have actually missed the race had he not left! I was glad that I got to do more than the finishline, but I really like working the finish and being a "pusher" because it is pretty fast paced and also fun to boss people around who don't know who you are but they listen to you anyway, and I also like being their cheerleader and telling them how great they did. We didn't have any pukers, so it was a good race, however it did rain the entire time so I was wet and hoarse and came home probably just as tired as the Hub who actually ran the race.

The rest of Thanksgiving was a little blurry. I think I fell asleep on the couch reading Look Me in the Eye. And I know I got up to help cook dinner (The Hub is the official Chef in the House. I'm just the assistant). It was interesting this year to keep it GFCF. The kids didn't like the turkey, but The Elder didn't mind the "chicken." (Cue: Evil Laugh) I think the tryptophan hit us all early...the kids were asleep by 7:15 and I think I started to fall asleep on the couch again while The Hub and I were trying to decide if we wanted to brave Black Friday or not.

We didn't. The Hub slept in and for the first time in a LOOOOONG time I had both kids to myself all morning. It was actually nice. We made Oatmeal, and ate Breakfast together, then started playing together. Then they were watching a DVD and I found myself waking up on the couch. Boy that tryptophan is merciless. Once The Hub was up we started decorating the Kids' tree. I think we decided since we weren't going to be here for the holidays that we would just do their tree and not put up the big one. This was the first year that we got to do some really fun decorating and we painted macaroni (some gluten pasta that we saved for projects) and strung it on fishing line. It was a great sensory and fine motor skills activity for them. The Younger was disinterested in stringing but enjoyed the macaroni maraca we made for him (until he dumped all th pasta in the floor). After that, another blur. I woke up to The Elder screaming and I came running into the kitchen. Short-lived food-related meltdown that ended up in nakedness but thank goodness no urine. Once the kids were asleep, it was The Hubs turn to nap, and I finished the book, which didn't seem like "work" at all. It was very entertaining, yet informative and pertinent to our circumstances. Here's a comment I left on BEYOND Understanding about the book...

"I loved the book too. It is the first book I have read every single word from cover to cover in less than a week in my entire life! It truly brought a lot of insight to what goes on in The Hub and the Elder's brain. It also gives me tremendous hope."

We sound soooooo lazy. But I think the Super Doc would be happy that we had a stress free Thanksgiving. So my apologies for letting the occasion pass without proper acknowledgments, and I hope that everyone had a wonderful day!

Taking a Break

Winding down the fall break. The military schedule went out the window (not entirely for the kids, but at least for me it did). No school so no reason to get up at before the crack of dawn. Papa and J-lo (girlfriend-in-law) were in town all week so no reason to occupy the kids. It was actually a perfect formula to get some major work done, but did I? Not really. I've had some sort of a belly ache all week and we haven't been able to pin point why. I could eat fine, no fever, no other symptoms other than my belly ached. We still managed to get some shopping done (mostly for the kids - I did get a pair of $60 shoes for myself for only $11.91-woo hoo!) and even went to the American Museum of Science and Energy in Oak Ridge. FUN!!!! I'll get pictures up later...my battery died and Papa has them all on his camera.

We went to Books-a-million, which was my fave place to take them because they could play on the train table and I could go read a book! I found a book there that has really impressed me. It is called Ten Things Every Child With Autism Wishes You Knew more as a quick reference for family because it is a thin, therefore less intimidating than the, by Ellen Notbohm. I bought it Attwood book, and simple and logically organized. There is the table of contents which lists the 10 things, then a preface with a little summary paragraph of each of the 10 things, and then 10 chapters which goes into each thing in more depth. I went through it and started making notes in the margins of what describes the Elder and what doesn't.

I also watched Mozart and the Whale again with J-lo. It is a funny movie, but I think it is because I know some inside stuff of how people with autism think. I found myself explaining a lot. So when you watch it, I do recommend that you watch it a second time with the commentary turned on because I think i learned more from that than just watching the movie.

When we went to the AMSE in Oak Ridge (which truly was an awesome experience - we'll have to go back again when I don't have a belly ache!), there was a young man with autism sitting to the side from his (I assume) dad and sister (maybe his brother and niece?) at an activity in the Cartoon Network exhibit. He appears to be nonverbal. I didn't even notice him at first, until the Younger ran by him and he caught my eye. What is interesting though is he was hitting his chest as he flapped and wasmgrunting fairly loudly, but it was only once I saw him that then I realized that I had been hearing him the whole time we were in that room (bc of my hyper-acute hearing I hear everything-something I can empathize with the Elder when I see him cover his ears, or constantly asking What's that sound?), but it never occurred to me that I needed to seek out who was making all those sounds like I might have needed to in the past. It was unconsciously filtered out. Also, in the past, I might have been a little stricken with fear at seeing him rocking away on the little stool where he was sitting, but instead I found myself just thinking "this is a pretty overwhelming place," and watched the dad as he was going back and forth between glances of engaging in activity with his daughter and keeping an eye on his son (brother?). I smiled in admiration of the dad and moved on to the next activity in the exhibit.

I was personally glad that I saw that young man. In conjunction with this past weekend's retreat, I am realizing that I am in a better place in my personal growth. It feels good to put my judgmental days behind me. Judging is really just the fear of the unknown or unexplained or the misery and dissatisfaction of one's own life. It has been amazing to go back and follow how God has had a hand in my life and how he is molding me and shaping me into the person that he wants me to be. He knew I wasn't happy constantly observing others and thinking about what they should or shouldn't do or what I would do if I were them. The truth is, I never know what I would do until it happens to me. Even what I predict I might do, I don't!

And when I stop judging others, I also stop fearing what others think of me.

Since the Elder and Hubs diagnoses, I have really had to step up to the plate in things even outside of household responsibilities, primarily around research and working, and even when I haven't wanted to, God throws in a curve ball that practically gives me no alternative but to grow up. One recent example of curve balls is that this week, I lost a really great employee (due to a parental illness) and probably won't replace her anytime soon. Plans to prosper and not to harm, right? Ooookaayyyy.....here come the growing pains...

Awareness Rising

I'm so grateful for the following emails that I've received from beloved family members who are showing their support and their effort in researching and accepting Aspergers into their family.

...Well I have just spent some very productive time reading through much of what you sent in this email. Not the books but your blogs. I sure wish I had some idea of this when Terry was a child. It was very frustrating at times. Especially in the mornings as I am a morning person and everyone in my family was. I did not cope well and he suffered as I did. I applaud your efforts...

...Hi, Thanks for sending the info about this new interesting creature so that we may be able to comprehend or understand better. Amazing that in an almost instant in our lives something happens and we somehow get thrown out of balance and we get in the middle of this seeming quagmire of confusing identities. Sure all of us got some quirks, some easy, some of them deep and difficult to explain but the tough thing to deal with is the person's feeling in trying to integrate, his/her own difficulty to communicate and trying to understand his/her own inadequacy. I say it's a tough life out there, tough enough to understand and give a response much less a proper one and then to call a name to it and diagnose more cases, ugh, it's contagious is there a vaccine available? Can't we just stop making sense?...

...I choose to believe that in the norm there is also a spectrum of responses, receptions, reactions etc. and they didn't all have to fit but look into their eyes and you might find a better response. How many times in our effort to explain what we feel/our assertions we really put down the other person without intending to? I much rather have the honest individual response even short of proper sensitivity than having no response at all. I am still confused and don't understand everything there is to know about this condition and we appreciate you getting a handle on things and trying work things out. I told your Mom, that's our Jennifer, she'll keep researching till she find everything out! Love can cure us all and remember we all love you very much!...

...I found 45 references [at the library] when I typed in Aspergers. Three were novels, two of them mysteries (?). There is one DVD titled Navigating The Social World. It was not stated what the DVD covered. There was only one entry for my branch so I got it. It's titled "Pretending To Be Normal". It's by a woman diagnosed with Aspergers. I thought it wouldn't hurt to see what it is about. Several of the entries were listed as on the shelves at the Farragut branch. I didn't reserve any as I really wanted to see the book list that is in the notebook Debi gave us. Of the 45 entries, there were several noted as "not available", so they are listed but there are no copies available to read. I was a little surprised at 45 entries, but then this is new to me. Keep the receipts for any books that you buy. If there is a center that opens up one of the first things they will need is a library!!...

Thank you so so so very much. Your words are supportive and your efforts and research initiative mean so much to me. It actually takes a huge burden off my shoulders to know that I have help in learning about this together with family and I can share the responsibility of understanding with others who have strong emotional ties to Terry and Eric. I'm not alone, facing a close-minded world. I'm so very blessed.