Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

12/8/07

NYU Child Study Center: Ransom Notes Campaign

I just opened the email from the NYU Child Study Center regarding their campaign for "public awareness" for childhood psychiatric disorders. This is their intro before they show the posters.

Don't let untreated psychiatric disorders take your child.

The NYU Child Study Center's "Ransom Notes" public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

There is nothing here that I find wrong. I hope every child suffering from depression or who is suicidal receives help. I think there does need to be a national dialogue, better information for parents and teens, training for educators, etc. I do feel more needs to be done for teenage depression and other similar issues. It breaks my heart that children and teenagers are affected by this. As a teen, I too battled depression, and was suicidal. This led to inpatient care at a facility, years of counseling, and medication. When I see myself as a teenager, I wish so much I never had those feelings & that I had accepted and appreciated myself. I wish I had one shred of self-worth. I had issues with self-esteem, anxiety, OCD, & also ADHD. I remember feeling like a freak. I remember the awkwardness of returning to school after being hospitalized--I had missed the first 2 months of school. Thankfully, I was accepted by my classmates. This is a rare exception to the rule. I was blessed to attend a school with (for the most part) very grounded individuals. Overall, we didn't judge and the various "cliques" all hung out with one another. Thank God for that--I can't imagine being stigmatized for my personal issues, especially at that time when I was very fragile.

So, I hope a day will come where other kids & teens who are dealing with emotional or psychological disorders will not be judged or criticized. Most often, it's the parents who have issues. Either they're upset their child is "not normal," or they blame themselves, or they are ashamed and don't want neighbors, friends, or even family finding out what their child is going through. It's something that is whispered & shamefully admitted. You shouldn't feel ashamed if you are having emotional or psychological problems. I am all for an ad campaign that would promote awareness and acceptance. I think some parents do miss the signs, while their child suffers. Ads that would alert parents to the obvious & often-missed signs would be helpful.

The NYU Child Study Center claims its aim is NOT to stigmatize childhood psychiatric disorders. However, after reading these ads, I was disturbed. I honestly feel they are doing that which they intended not to do. For one, I'm not entirely sure why they grouped together Autism with Depression, etc. If their concern is depression & suicide, address that. Whether someone is autistic or not, help their depression. Why were the posters for autism put into this campaign? They seem like the odd man out.

First & foremost, the majority of families who have a child with Autism, Asperger's, or ADHD often are obviously aware of it. An ad campaign like this--supposedly geared toward teenagers or parents of teens, does nothing to help parents or autistic young children. So, to make posters like these--which once again, creates a stigma that people on the spectrum are inhuman, is pointless & harmful. The words that are used are: "possession," "detriment to himself and those around him," "destroying," "life of complete isolation," and then the Autism poster which is a long sentence of hopelessness & despair.

The posters are inaccurate, further give weight to existing false & hurtful stereotypes, and, again, DO NOTHING to help either autistic children, teens, or adults, or their parents and family. So, what is the point?? Is there a connection here to Autism Speaks that I am missing out on? Or is it simply that this Child Study Center sees how successful Autism Speaks has been with their fear & dread campaigns, that they want to rake in the big dough too??? I'm so sick & tired of these "foundations" preying on the fears of parents & basically using my child to make a lot of money. A lot of money that will do NOTHING for my autistic child.

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So, with these posters, who are you helping? Are you really making parents aware? Odds are, this type of "awareness" campaign will not help parents. Their children will most likely get a diagnosis, if they truly have ADHD or Autism. So, who are these ads for then? They are the same propaganda that Autism Speaks sells--Autism has stolen your child, he is not human, he should not be afforded civil rights.

How about a poster about how people who fidget or don't make eye contact or may have difficulty in social settings be accepted? How about identifying these people as valuable members of society? How about respect? What about teaching kids it's not right to bully someone, simply because they are different. This center had an opportunity, obviously they had the funds, to make a campaign that would de-stigmatize Autism and the psychiatric disorders they are talking about. But, they neither achieved the ability to create public awareness nor truly help the people they are supposedly advocating for.

I have a little less negativity toward the posters on OCD & depression. I'm not offended by them as I am by the ADHD & Autism ones--those are highly offensive, in my opinion. I do have issues with them, however. With regard to OCD, typically, if someone has it to the extent that they need help, it will be fairly obvious. If a parent doesn't recognize the signs, that is a result of poor or absent parenting. All the posters in the world will not improve that. I used to count everything, and I mean everything. I hated public restrooms. For years, I never touched a doorknob--either I'd have someone else open the door, or I'd cover my hand with fabric. I had many rituals. If you spent a 1/2 hour with me, it would be very apparent. I did need help, and because it was obvious and affecting my life, I received the help. Honestly, if your child is not washing their hands until they are raw, would you realize they had OCD from this poster? It breeds fear with the last line of, "This is only the beginning."

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The fear-mongering continues with the depression poster. While I do agree the statements made in the poster do depict what depression can do, I do not like its delivery. What does this poster do to make someone aware of depression? Would I realize my teenager was depressed after reading this? The only parents this will help, are those who are well-aware their child is depressed. Perhaps it will prompt them to get more help. But, to be honest, this is a very small minority. I hid my depression very well from my family. I'm great at putting a smile on my face & hiding all of my emotions. I was a cutter. I hid that well too. It was not until I was to the point of killing myself, that my family became horribly aware of the reality of my situation. A poster like this would not have had an affect on my family. So, again, who is this helping? If I'm a teen who is depressed, reading this, would most likely make me even more depressed and feel more helpless.

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Along with my boatload of problems mentioned above, I've also had issues with food & diets. I've starved myself and binged and purged. To be honest, the bulimia poster is the only one I don't really have a problem with (& by that I mean, this poster alone would not lead me to write this blog entry, call & write the center and its sponsors, and email everyone I know about this ad campaign, and how to fight back...), as far as its content. Again, the delivery sucks, and I hate all the dark, fear-inciting, kidnapping theme. They really think it's not stigmatizing?? The problem also is, again, who is this helping? The parent who is aware their child is bulimic or anorexic, may be prompted to get more help after seeing this. But, for the vast majority of parents who are clueless to their child's eating disorder, this does nothing for them. How about listing some signs of what to look out for? You could have this same poster, but be sure to show what to look out for. Marks on their knuckles, going to the bathroom right after a meal, dental issues, hair falling out, etc. There are PLENTY of signs to make parents aware of.

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So, overall, I give this ad campaign a big fat failing grade. Not only does it not promote awareness nor help parents, it stigmatizes & promotes stereotypes about ADHD, Autism, & OCD. I wonder the price tag on this venture. I wonder all the good those types of funds could have done, if put in the right hands. Posters & pamphlets for parents, with pertinent information. Posters & pamphlets for children and teens that promote acceptance, discourage bullying, and let affected kids know they are important and valued.

Please, be informed:
http://www.autismability.com
http://www.autisticadvocacy.org

And, get involved, voice your opinion:
NYU Child Study Center:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
Fax: 212.263.0990
Dr. Koplewicz's E-mail: Harold.Koplewicz@nyumc.org
Communications Department:
Beth Rowan, Director of Communications
212.404.3757
Beth.Rowan@nyumc.org
NYU Child Study Center
577 First Avenue
New York, NY 10016

Also, check out:
http://autisticbfh.blogspot.com/2007/12/held-for-ransom.html
http://djdialogue143.blogspot.com/2007/12/follow-up-from-yesterday-my-letter.html


And...a DELAYED update, but a great news update none the less:
http://www.autismvox.com/ransom-notes-campaign-is-over/



12/5/07

Down Syndrome Moms and Autism Moms: Holland and Beirut

The stark difference between the two is amazing. I know a few families who have children with Down Syndrome. Never once have I heard any of these moms complain about the self-help delays, speech issues, behavioral troubles, etc. Sure, they may, in confidence, discuss these topics. But, their tone when they do, is out of concern for their child--not themselves. It seems to be a common thread amongst Down Syndrome families to accept, love, & support their child. It also is apparent that these families do not allow a diagnosis to predict one's future success or happiness. These families go about their life, good days & bad, and prepare their children for life in the real world. They are hopeful about their children's future.

Quite a change from so many Autism families. The talk is often how tedious & tiring the autistic child's delays and behaviors are. The families so often speak of their "battle" against autism, and how their child will never achieve anything great. It is curious to me, how these sets of families can be so different.

A friend sent me "Welcome To Holland" early on, when my daughter was thought to possibly have a progressive brain disorder. It gave me hope, it's been hung up near my desk since. It wasn't until I was on an autism message board a while back, that I ever thought anyone might take issue with it (an inspirational & uplifting poem, not a political speech!). The mothers there, for the most part, took it apart & stomped on it. Someone posted this, which, according to them, was much more accurate for "us" Autism moms, "Welcome to Beirut." Interesting how even in poetry, a Down Syndrome mom chooses "Holland" to describe her life, an Autism mom chooses "Beirut."


And now just my free-write-babble (please do see article & video below!):
The mothers I know who have children with Down Syndrome, we have a lot in common. For one, my daughter's physical health issues & birth defects are common in children with Down Syndrome. Aside from that, we can relate to the developmental delays & behaviors. From the way I see it, Autism & Down Syndrome have a lot of similarities. Unfortunately, how so many families are perceiving and reacting to their child's autism is much different. I fear this may have been how Down Syndrome was perceived 40 years ago. Then came genetic testing, and in time, 90% of the Down Syndrome population never came to live. Was it then that people realized their importance in this world? Or was it something else? I am rambling & wondering. I fear that the research being put into Autism Speaks & the like, will lead to a genetic screening. I see genetic testing as a slippery slope, and often far too close to eugenics and Hitler. If you were wondering, I am neither pro-life nor pro-choice, I honestly haven't come to a decision yet. I have a lot of unanswered questions about both sides of the argument. But, just so you know, I am not coming at this from an anti-abortion perspective. No, my p.o.v. is "who the hell decided we should pick and choose what humans are acceptable to live with us?" And, when will it end?

I came across this article on Amanda Bagg's blog, which I came to while I was doing more research on eugenics. Thought I would share it:

"I am a person, not a disease."

&, this video:





If you have time, go to the page for this video to read the comments:

I see similarities here too, & perhaps the drum is beating louder now for an autistic movement such as the one for Down Syndrome.

12/3/07

Scary Huge Dora Doll (Cute Story)

I am going to try and add some personal stories and some funny bits to this blog. I want to not only be a "mom on a mission" but also to celebrate my child, and let the world in on what my vast reality is. Just an fyi... :)

So, the other day, my daughter and I are at a department store (or the "market" as she refers to it). We are walking up and down the toy aisles, as this is something she enjoys, second only to the produce section. Many things are catching her eye. I happen to look up & see an extremely large Dora the Explorer doll. When I say large, this doll is 34" tall, with a massive noggin. This picture just doesn't do it justice:



So, I tell my daughter to look up. She jumps & smiles, shouts "WOAH!!" She can't get over this large creation. I laugh, as the doll is ridiculous, and my daughter's reaction is priceless! My daughter continues to jump and walk all over the aisle, eying the big doll, making all sorts of noises. Passerbys are smiling at her. She assures me "no want dat!" Later she adds, "dah fuh montuh!! (that's for a monster!). She gets so extremely excited over this Dora doll. Minutes passed as we stood in that aisle, this gigantic doll gave my daughter and I such joy on our little shopping trip. Who would have ever guessed?