Oops! Back to Our Regularly Scheduled Program...

Last week I ended up going to the ER due to back pain. I thought that maybe I had a kidney infection, which is why I went to the ER. Turns out that it was back pain due to my bulging disc and muscle pain.

I've never had a muscle spasm in my back quite like that before. It was like having a charlie horse along my thoracic and lumbar spine. Luckily steroids and non-steroidal anti-inflammatory cleared up almost all of the pain. I can move again! : )

Them Bones

Celest is hiding in the closet listening to Alice in Chains' "Them Bones". She keeps saying, "Aaahh. [pause] Aaahh." That's her imitation of Layne Staley's intro to the song. Funny stuff. : )

Holiday Giveaway Number 2!

Congrats again to Pilar Pitty for winning last week's giveaway!




For this week's giveaway, I am offering a Swarovski Crystal Elements pendant. It is a 18KGP cherry pendant. There are two red crystal element beads and two white crystal element beads for leaves. I think it is a very cute pendant. The retail value is approximately $30.



There are two ways to enter:





Become a follower to my blog (this blog and/or http://www.randomtangentlm.blogspot.com/)



Add me to your favorite sellers/stores on eBay (http://stores.ebay.com/Autism-Twins-Mom )



With that said, you can actually have a total of three entries per week if you become a follower to both of my blogs and add me to your favorites on eBay you will have one entry per action. Once you follow my blog and/or add me to your favorites on eBay send me a message to laura (at) lbmeditorial (dot) com or leave me a comment to this post letting me know your username/Blogger profile and that you'd like to be entered to win.



If you win one week, you will be ineligible the following week, but the next week you will be eligible again.

And the Winner is...

This week's winner is Pilar Pitty! I will be posting the new giveaway item shortly.

Ah, the Joys of Puberty! Revisited...

Celest has recently discovered that she can see her "booty" in the bathroom mirror if she turns her back to the mirror, juts her hip out, and turns her head around to see it. And she certainly enjoys seeing it. I'll check on her if she seems to be taking too long in the bathroom and usually she has stripped down to her birthday suit, struck a pose, and is admiring her booty. (It'd be me that told her it is a booty. Maybe not such a great choice, in retrospect. At least I didn't tell her it was a badonkadonk.)

It is too funny to catch her admiring herself in the mirror. I guess I am happy that she seems to have the self esteem that I never had.

Lotus doesn't seem overly concerned with her booty, but she has decided she's not going to be pushed around any more. She picks fights with Celest over the video game and TV remote, toys, art supplies, and anything else she can think of. Usually it is Celest starting the fight, but Lotus gives as good as she gets (and then some!). At some point I think she snapped and I picture her going to the window, poking her head out, and yelling, "I'm mad as hell, and I'm not going to take it anymore! You hear me, Celest?!"

Giveaways From Now Until Christmas

I am going to be having a drawing every week from now until Christmas. Each Friday a drawing will be held and the winner will receive that week's prize package.

There are two ways to enter:

Become a follower to my blog (this blog and/or http://www.randomtangentlm.blogspot.com/)

Add me to your favorite sellers/stores on eBay (http://stores.ebay.com/Autism-Twins-Mom )

With that said, you can actually have a total of three entries per week if you become a follower to both of my blogs and add me to your favorites on eBay you will have one entry per action. Once you follow my blog and/or add me to your favorites on eBay send me a message to laura (at) lbmeditorial (dot) com or leave me a comment to this post letting me know your username/Blogger profile and that you'd like to be entered to win.

If you win one week, you will be ineligible the following week, but the next week you will be eligible again.

This week the giveaway is for a large collection of new Jane cosmetics. Included are the following items:

• 5 Sets of Eye Zing eyeshadow, one of each color: white, blue, purple, peach, and pink
• 1 Curling Mascara
• 1 Color Stick eyeliner, shade number 04- Sitting Pretty
• 1 Barely Lips Sheer Lipstick, shade number 9- Little Pinkie (very popular in Greece this time of year, or so it seems-lol)
• 2 Megabites Flavored Lipsticks, shade numbers 12- Cinnamax and 25 Merry Berry 
• 1 Attitubes Lipgloss, shade number 02- Cheerful 
• 1 High Shine Gloss lipgloss
• 2 Gliding Liner eye pencils, shade numbers 03- Pink Moon and 10- Buttercup
• 1 Eye Brightener
• 1 Lightweight Cream to Powder Foundation Compact w/Mirror, shade number 04- Buff

 The retail value of this giveaway is approximately $80.

 Your information is completely confidential, and I will not share it with anyone.

To be compliant with the FTC, I do not work for Jane cosmetics or any other company affiliated with this or future giveaways. I am merely offering the giveaways as a cross promotion of my blogs and eBay store, and because I wanted to do something fun for the holidays with my blog. : )

  

With a Name Like "Super Meat Boy", I Should've Known...

The girls bought about $75 worth of Xbox 360 game credits before we'd realized that they were actually buying things (this was about a month ago). So we changed the billing card to an soon-to-be-expired credit card to avoid further buying sprees.

However, since Microsoft has a strict no refund policy, we decided not to even try to get a credit. So, we had enough game credits to buy about four $19.99 games. I bought Plants vs. Zombies (which I already had on my phone and computer--however Lotus likes it so I thought she might enjoy having access to it when I have my phone & computer). I also bought Viva Pinata, which is a freaking huge game (over 4G). It refuses to download, so I need to get in touch with Microsoft and see if they can help me figure it out.

Then there was a silly looking game on sale, called Super Meat Boy. It said that it was rated T for teen, but I figured that the naughty stuff wouldn't be anything the girls could pick up. Really, when a block shaped guy flips you the bird with a block shaped hand it is pretty hard to tell he's being profane.

Also, the description states that the game is "devilishly hard". They aren't lying. I made it through Chapter 1: The Forest okay, though it definitely had tough spots. Then in Chapter 2: Hospital I was unable to complete any of the stages. Of course I'm probably below average in the skill department for this sort of game though.

Anyway, now Celest and Lotus both keep turning the game on and having poor Meat Boy die over and over and over again. Or watching the intro then logging out and back in to watch it again.

It is a neat looking game with an intentionally retro side scroller feel. And it is funny/quirky without overdoing it too much. Still, when you can't get past a certain point in a game it is annoying. And watching someone else repeatedly fail at a level on a game is just as much, if not more, annoying.

See More Super Meat Boy Screenshot at IGN.com

Estate Auctions and Wheelchair Escapades

Since I didn't have anyone to watch the girls yesterday, I had to take them with me to pick up some items I'd won from an online estate auction.

The items were in a small shop along side a busy section of West Broad Street. They both got out of the car okay and walked in to the shop nicely as well. When we were waiting for a guy to help us find our items, Lotus spotted a large motorized wheelchair and hopped on it. I tried to get her off of it, but she started to do a 360 degree turn. As I reached for the joystick used to control the movement the foot rest knocked over a stack of DVDs and then it soon bashed into a table leg. Luckily the table leg stopped the chair's movement and I was able to get her hand off of the remote.

Fortunately the two guys working for the auctioneer were very understanding. It probably helps that we didn't destroy anything either. : )

I was embarrassed, but the girls had a good time. They were giggling and laughing most of the way home.

Ooh, Ooh, Ah, Ooh, Ooh, Ah!

Celest came home from school and I heard her singing something under her breath. I got close enough to hear, and this is what she was singing, "We will, we will rock you. Ooh, ooh, ah! Ooh, ooh, ah!"

I thought it was kind of funny. She used to sing "Radio Ga Ga" a lot. That was about five or so years ago, before Lady Gaga took her moniker from the song. Which I've never really understood, since she and her manager likened her vocal prowess to Freddie Mercury's (ha- as if!). "Radio Ga Ga" was performed by Queen, but it was written by Roger Taylor. Out of the entire Queen catalog, I certainly wouldn't choose that song as on that epitomized Freddie's brilliant vocal range.

Oh well. I don't think Lady Bohemian Rhapsody would have gone over very well anyway. : )

Asperger's and World of Warcraft

A teen with Asperger's Syndrome got an NPC named after him in the game World of Warcraft because he found an error in the game and brought it to the developers' attention at BlizzCon.
Here's the story on Yahoo.

Of course if you read the comments there are a bunch of nobodies calling the kid a loser and a nerd. Also, they evidently think getting laid makes you a valuable and important human being; and by assuming this kid hasn't "gotten laid" he is a loser.

Which makes me wonder why having sex is seen as some sort of accomplishment and status symbol. People who don't do it are considered losers or somehow less than those who do it. Honestly, if you think about it, it takes very little skill to have sex. Unless you are trying to conceive there is no purpose for it other than recreation. Yet, playing video games for recreation (which, having done both activities for recreation, I find that playing video games is more engaging and challenging most of the time) makes you a loser. Hmm. Something doesn't add up with those equations for me.

Anyway, I thought it was pretty neat that he was able to overcome his Asperger symptoms of social skill difficulties and verbal difficulties to speak in front of a large group of people and to have the guts to call people out on a mistake. : )

Lots of Things

I've been having trouble finding motivation to work on things, so I haven't written on  this blog in a while. The girls have done plenty of interesting, silly, frustrating, and exhausting things though.

I feel like this year has just been exhausting for me, both mentally and physically. The girls are going through puberty and don't really understand what is going on in their bodies. They are looking more like teenagers now, but they still have the cognitive abilities of younger children. It's a difficult situation for me to handle. Even though I've known this is the case for quite some time, it is still hard for me to accept.

The girls are happy much of the time, but they miss out on lots of little and big things because of their autism. I can't take them out to do fun things unless I have someone to help me, which is really frustrating. When I do take them to do things I get exhausted and stressed out. I enjoy seeing them have fun and do new things though.

This past Saturday we went to a farm. The girls got to ride a horse, collect chicken eggs, and pet and feed different animals. The farm owners had sliced apples and sweet potatoes to feed the animals. When they gave Celest an apple slice to feed the baby deer she ate it herself. She proceeded to "help" the animals eat the apples. She'd give a slice to an animal then have one for herself. Or she'd take a bite then feed it to the animal.

There was a funny turkey that would gobble if you said "gobble, gobble, gobble" to it. Celest had lots of fun with him.

By the time we were getting ready to leave Celest was getting upset and talking about emergencies. She kept saying, "Emergency please! Emergency!" She comes up with some strange requests. : )

Lotus got upset too, but I'm not sure why. She was hitting her head and crying, but by the time we walked to the car she was fine.

We went bowling the Sunday before that weekend, and the girls both had lots of fun. I am happy that I can take them out for things now, but I get depressed when I think about how difficult it is and wonder if I won't be able to do these things in the future.

I am trying to focus on what we can do now and enjoy all the little moments. Unfortunately I tend to be pessimistic and depressive, so I continuously have to redirect my thoughts.

Celest's Inadvertent PR Idea

Celest has been obsessing about electric meters lately. For some reason she's decided that they are decagons. And on the topic of geometric shapes, she's been a bit obsessed with the number of sides of different polygons and their names.

However, if I don't give her the name or number she wants she just repeats her version until I agree. The other day she was going on about pentagons, and she suddenly decided that they weren't pentagons after all: they were peace-agons (I chose that spelling, but either way, piece or peace is how she pronounces it).

I was thinking that maybe she could pitch this to the government as part of a Department of Defense and military PR overhaul. The Pentagon would become the Peace-agon, the government entity dedicated to achieving peace. They don't have to change any actual procedures or policies, this would be strictly an image makeover.

Dang Life Touch!

First of all, let me disclose that Life Touch, the portrait company, has always sort of irked me. At least as an adult. In my senior year of high school I paid about $300-$400 to have my senior portrait taken by a photographer. He included a yearbook photo, which fit the style and size requirements pretty much all yearbooks follow.

However, when I tried to submit it to the school I was told they wouldn't use it. Why? Because they felt it was unfair to the Life Touch photographer because he did all the other school photos from K-11, so he should be the only photographer for the seniors as well. Bull crap, I think. In the guise of not hurting the photographer's feelings they force you to have your photo taken by him. I'm sure money had nothing to do with it.

Anyway, I ended up getting my pic taken by the Life Touch photographer when I rode along with my friend. I wasn't planning on getting my picture taken, but that's when I found out about the no-outside-photographer crap. The high school year book president/coordinator/whatever-you-call-her looked me up and down, then quipped, "You're getting your picture taken in that?"

I didn't much care for this lady either, and my feelings were confirmed by her snotty attitude towards me. Incidentally, I was wearing the same John Lennon "Imagine" shirt that I had to my other senior portrait shoot.

Anyway, back to the present. I got the little Safe Smile, or whatever they're called, cards from Life Touch last year. I didn't have the money to buy the photos at the time, but the cards said the photos were accessible until December 2010. I thought I had until then to order photos. Nope. I guess that date means that law enforcement can access that photo in the event a child is abducted. To me, I would assume this means that the photo is in a digital retrieval system somewhere until December of this year.

So why can't I order a copy of the pictures then? Well, I can order Lotus' pic until next Tuesday. Celest's, however, are unavailable. As luck would have it, it is the best school picture they've ever taken of her. She is looking right at the camera and smiling. She looks really beautiful.

I'm really sad and annoyed that they won't let me order the picture. Lotus' picture came out good as well, so I'll still order it. I'm just very disappointed they won't let me order Celest's pics.

As the title says, Dang Life Touch!

Jett Travolta

John Travolta finally admitted that Jett had autism. Many parents of kids with autism were pretty convinced that Jett did have autism, but John Travolta denied it. He said Jett had Kawasaki disease (a disease involving inflammation of the blood vessels and high fever), which he may also have had at some point in time.

After all of the horrible pain his family has gone through, he decided to not pursue the extortion charges against the paramedic that arrived to treat Jett and a Bahamian politician.

I guess I am happy that he finally confirmed it, as I don't think autism is anything to hide or be ashamed of. Of course, I don't think John had to "admit" to anything per se, but by repeatedly denying his son had autism it seemed that he felt the need to hide something or maybe he was in denial.

Really it's none of my business, or anyone else's for that matter, but since he is a celebrity we know more of his personal life than we need to. I just hope that his family is able to remember the good times with Jett and let their new son know about the brother he never got to meet.

Puberty or Something Else?

The past few days have been really rough. I don't know if it's puberty, the change of starting back to school, or something else all together.

Lotus has bruises all over her arms and torso from her almost constant pinching. She has scabs on her hands from biting them. She has been trying to pull her hair out again as well. She just gets so angry and directs it towards herself. I don't really know why, so I can only guess that it's hormones or stress. Or something else entirely.

Celest has been having rages. She tries to attack whoever is close to her most of the time. Sometimes she gets mad over being told she can't have something while other times it isn't clear what triggers her fury.

Hopefully this phase will pass soon, but either way, it'd be nice to know what the girls are feeling. The reasons for their emotions remain a mystery to me much of the time, which is frustrating.

Super Duper vs. Mattel

An awesome special needs product company has been sued by Mattel for using the words "Say" and "and Say" on some of their materials. Mattel thinks they are ripping off the See 'n' Say toy.

Aside from the fact that the products with the words in question don't make sounds and don't have a pull handle, these materials are catalog and internet sales only.

You're not going to walk into a Toys'R'Us and find a speech pathology game (to use an example) called "See It!, Say It!" and think to yourself, "Hmm, my kids just loved that See'n'Say toy. This must be made by the same company. I'll buy it because my kids had so much fun with the other toys by this company!"

Mattel already won some money from Super Duper, but now they are trying to make them destroy all of the materials that currently have the words "say" or "and say" on them and produce all new copies of the materials with new titles. This, in addition to the money Mattel is suing for, would probably bankrupt the company, I'm guessing. They aren't a huge business.

I've ordered from them several times. They have items that are great for kids with autism, speech/language delays, and other special needs. I hope they win their appeal.

Here is an email I received from the company asking for help distributing this info, so I thought I'd share it:

This message is NOT an advertisement. It concerns the Super Duper-Mattel case.

We at Super Duper ask that you consider helping us in our fight with Mattel over the use of the words SAY and AND SAY in our product titles.

If you are a member of any state or national organizations, please encourage them to contact me, Thomas Webber, and join with other organizations in support of filing an amicus brief (friend of the court brief) with the U.S. Supreme Court, asking the Court to hear Super Duper’s appeal. I will explain the rest.

My email is tomw@superduperinc.com and my cell phone is 864-884-1079.

Thank you for taking time to consider helping us.

Thomas Webber

This is a special message from Super Duper® Publications ©2010 dealing with the Mattel case.

I also copied this press release from Newswire.com:

Mattel wants Small Special Education Co Super Duper to Pay $5.46 million, and More...

Not satisfied with a $400,000 verdict against small special education company Super Duper Publications (based upon SD using the word SAY in some of its special needs product titles), Mattel has asked the trial court to make Super Duper pay $5.46 million dollars in attorneys fees and costs, plus stop Super Duper from selling these SAY products until it takes SAY out of the product names.

At trial, Mattel lost on two of the claims it brought against Super Duper (alleged unfair competition, and alleged fraud before the federal Trademark Office), and also lost on its trademark and infringement claims relating to eight (8) of Super Duper's fifteen (15) SAY titles.

Despite the mixed verdict, Mattel wants Super Duper to fully reimburse it for all of its fees and costs of the lawsuit.

In addition, Mattel has asked the trial court to permanently prohibit Super Duper from selling seven lines of its SAY products until Super Duper changes the names in the titles of these products to something that does not use the SAY word. If the court grants this request, Super Duper would have to destroy hundreds of thousands of dollars in special education product inventory, stop selling these products indefinitely, and spend hundreds of thousand of more dollars to replace these products with ones that have new titles.

Thomas Webber, co-owner of Super Duper, has previously indicated that Super Duper will appeal the $400,000 judgment to the Fourth Circuit Court of Appeals because Super Duper believes it has done nothing wrong in using the SAY word on product titles that are directed specifically to teachers and parents of autistic children and other children with speech and language delays or disabilities.

Mr. Webber also stated that should the trial court grant Mattel’s request for $5.46 in attorneys’ fees and costs, Super Duper will ask the Appeals Court to suspend collection of this sum until the appeal is heard. He further indicated that If the trial court orders that Super Duper stop selling the SAY titles involved in the judgment, he will ask the Appeals Court to allow Super Duper to continue to selling these products until the Court renders its decision on appeal.

It's 1:27 am...

And Celest is up crying and singing/whining that she's a baby because I won't let her "watch please" or "watch TV now". At first I thought she was asking for a watch to wear, since she said she wanted a green watch, then a yellow watch. Finally she threw on the "TV" part so I knew what she meant. She is so tired and grouchy. I can't imagine she's going to be any happier when we have to wake up in five hours to get ready for the first day of school.

Hopefully she will be tired enough tomorrow night to fall asleep at a decent hour. About three-to-four months of seeing a psychiatrist to get a sleeping medication that will work has been unsuccessful. I was informed at my last appointment that this new prescription will be the last the doctor will try. I guess we're just supposed to deal with little-to-no sleep for months on end. It seems like modern medicine would have something that works.

The one medicine that did work was causing involuntary muscle spasms on Celest's face (tardive dyskinesia), which would become permanent if we didn't stop the medicine. It figures. Hmm...

School is starting Monday, and this year I'm sad

I usually am glad for school to start back up because I have very limited time and energy to do anything other than watch the girls during the summer. By August I'm usually very ready to send them off to school. This year, for some reason, I'm sad thinking about sending them to school.

Maybe it's because the older they get, the more difficult it is to handle them and I'm worried something will happen while they are at school. Or that now that they are both in middle school, I am worried about ridicule and/or harrassment from other kids their age. Maybe I just don't want to be alone while they are at school. None of these reasons seem right, but I'm not sure why I feel sad for this year to start.

I'm becoming more reclusive because there aren't many places that I can take the girls by myself. It's frustrating and depressing to know that I have to have help to take my own kids out for the day. I can manage visiting relatives, going to one particular gas station, two different McDonalds restaurants, and a couple of the local metro parks.

However, the parks sometimes present a problem because Lotus does not want to get out of the car. So, for anywhere from one to five or more minutes I have to try to lure Lotus out of the car. I'll have Celest help me by tugging on her hand (which once in a great while works). Or I might try to entice her with the promise of gum or candy. Most often I've found that I can get in on the other side of the car, slide across the seat until I'm sitting right next to her, and then I'll use my body to push her out of the car. Then I have to hurry up and close the door and lock it so she doesn't just hop right back in.

By this point I've usually lost most of my energy and patience for the park trip. However, I stick it out for a least a few minutes so that we get some play time in.

The biggest obstacles seem to be: getting both girls out of the car and heading in the right direction; keeping both girls close to me; and having one of the girls either lay/sit on the floor/ground/parking lot and not being able to get her to stand up and walk for a while. It's frustrating. It's exhausting. Occasionally we become a spectacle and I get to hear the wisdom of my fellow humans about either my kids or my parenting ability. I usually have a strong desire to curse them out, but I don't.

Since I no longer have a gym membership, I really have no desire to go anywhere. And when I did have a membership that's pretty much where I spent all of my time outside of the home. I usually don't have disposable income, so shopping isn't an option (I'm not much of a window shopper). I don't care too much for watching movies at a cinema (and again, that costs money). I don't really have the urge to leave the house and do anything.

Maybe that's sad and/or pathetic, but, at present, it doesn't bother me. I just don't have the desire to go out. I figure that some time in the future the desire will come back on its own. If not, I think the hermetic lifestyle of dwelling in my suburban home is okay. It's not quite the woods or a cave, where I might picture an actual hermit living. So that makes it okay, right?

20th Anniversary of the Americans with Disabilities Act

The following information is from the National ADA Symposium. July 26, 2010 marked the 20th anniversary of the passage of the ADA:



Become part of a nation-wide effort to collect 2,010 �Proclamations of Recommitment� to the Americans with Disabilities Act (ADA) in recognition of the 20th anniversary of the passage of the ADA. The goal of the 2010 by 2010 Campaign is to collect 2,010 �Proclamations of Recommitment� from state and local governments, schools and colleges, businesses, organizations, service providers, and advocates before the end of year. The current list of proclamation signees can be found of the 2010 by 2010 Campaign website: www.2010anniversary.org. The 2010 by 2010 Campaign has already received the support of mayors, governors, business leaders, and organizations from across the United States. Find out how your community, business, or organization can become part of the ever growing list, visit www.2010anniversary.org today. Updates can be followed on Twitter at www.twitter.com/ADA_Anniversary The 2010 by 2010 Campaign is an activity of the National ADA Symposium.

A Wild Ride

A Wild Ride is a website with personal stories from parents about raising challenging kids. There are also resources and lots of good tips.

I've written for them a couple of times, and I check their site often for new stories. I thought I'd share the link for anyone interested.

Thoughts

I am curious what others think about cases where parents murder their children. Obviously I began thinking about this because of the story posted below. However I've wondered about this before whenever there was a news story of a parent murdering his/her children.

There have been numerous cases of parents murdering their kids because they thought the child's disability made life unenjoyable or tragic (either the child's and/or the parent's).

I remember reading a story where a Canadian mom took her teenage daugther, who had autism, to a bridge and tried to get her to jump off. Her daughter wouldn't so the mother took her home and strangled her to death with the drawstrings on a hoodie-style shirt. She described what she was thinking during the event: she was crying and thinking something along the lines of "please, just die" over and over.

I remember reading the article vividly, because I sobbed almost uncontrollably while reading it. I was imagining someone killing the child that trusts them. Being the one (or one of a select few) who the child trusted and depended on. The girl fought her mother and tried to free herself.

It may be because I have asthma, but the thought of suffocating to death scares me intensely. I visualized one of my daughters trustingly walking off with someone who wanted to kill them. It made me so sick and depressed. I hate seeing stories like this, but I always read them anyway.

It is so tragic that some people think children and adults with disabilities don't enjoy life. Or that they are such a hindrance to their families that their death is beneficial.

Often when I tell people that my twin daugthers have autism they respond that they are "so sorry". Or that I must really have my hands full (true). Then again most people with kids have their hands full. I also hear that I'm such a great mom, I'm so strong, I'm so patient, I'm such a great person, etc. All because I have two kids with autism. And I hear a lot about how much I sacrifice for my kids, and that lots of other people wouldn't be able to do it.

Really? Being busy, having different (if not more) problems than many parents, and raising my kids isn't really anything I feel that I have a choice in. As long as I can take care of my daughters I will. I don't have anything else so pressing in my life that they are hindering me from. Really, they are the most important thing in my life. I think most parents would agree that their kids are the most important part of their lives.

Anyway, if you care to share your opinion, I made a little poll:

If a parent murders a child who has a disability or life-altering medical condition, do you think the justice system is more lenient with sentencing?
Yes, And rightfully so. Yes, but it's unfair. No, it's pretty much the same for any parent who murders his/her child. No, but it should be.
	Results

Mother murders her two children who had autism

This is so sad. This lady obviously wasn't getting the support or help she needed. Those poor little kids.

July 21, 2010

ASSOCIATED PRESS
DALLAS -- A suburban Dallas mother accused of strangling her two young children told a 911 operator she killed them because they were autistic and she wanted "normal kids," according to a tape released Wednesday.

Irving police released the recording after Saiqa Akhter was charged with one count of capital murder in the strangling of her 5-year-old son, Zain Akhter, at the family's apartment Monday night. Police spokesman David Tull said another capital murder charge is pending in the slaying of her 2-year-old daughter, Faryaal Akhter, who died Tuesday night.

Police say the mother called 911 after attacking the children. In the recording, the woman identifies herself as Saiqa Akhter and repeatedly tells the operator she killed her two children, describing how she first tried to poison them, then later strangled them with some type of wire. At one point during the recording, the woman hangs up and the dispatcher calls her back.

"I killed them. I killed both of them," she told the operator. Later, she explained that both children were lying motionless on the bed in the master bedroom.

"They are not doing anything. They are just blue and they are not taking any breaths and ... their heart is not beating," she said.

She told the operator she initially tried to poison the children with bathroom cleaner but they refused to drink it. When that didn't work, "I used a wire on their necks," she said.

When the operator asked the woman why she attacked her children, she said, "They're both not normal, not normal. They're autistic. Both are autistic." Pressed further, she said, "I don't want my children to be like that. ... I want normal kids."

Later, the dispatcher asked the woman what she was feeling. "Nothing," she responded.

At one point, water can be heard running in the background and the dispatcher asks what the woman is doing. She told the operator she was trying to wash the smell of cleaner off of her hands. The dispatcher then told the woman to go sit on a couch in the living room and wait for police.

At the end of the recording, police can be heard arriving at the home.

Akhter has requested a court-appointed attorney but one hasn't been assigned to her case yet, an Irving jail official said Wednesday. If convicted of capital murder, Akhter could face the death penalty, though prosecutors have not said if they will seek that punishment. Otherwise, she could face life in prison without parole.

Saiqa Akhter's uncle, Wasimul Haque, told The Dallas Morning News that his niece had been depressed since moving into a new apartment in Irving. Haque said Zain had autism and a severe speech impediment but had been improving and was in speech therapy.

The children's father, Rashid Akhter, emigrated from Pakistan in the late 1990s, the newspaper reported. He married Saiqa, who also is from Pakistan, several years later, it said.

Zain was buried Wednesday in Richardson, another Dallas suburb. Faryaal's funeral is scheduled for Thursday.


Sorry for the poorly adjusted ad; to repost the article for free I had to post that ad. Unfortunately it doesn't fit very well on my blog.

The People's Court "Retard" Smackdown!

I saw this episode the other day, and I love how the judge yells at the defendent for his ignorant comments. He says the plaintiff isn't "special, he's special olympics". He also said the plaintiff "played like a retard". I'm glad she had no tolerance for that kind of prejudice. It seems like most people I know don't think misusing retard and other phrases that make fun people with mental disabilities is equivalent to racial or sexual orientation slurs.

I knew I wasn't the only one!

I found this shirt on Cafe Press. : )

It's been a while...

It's been a bit since I last posted because school is out, and I get kind of tired just thinking about all of the things that I've wanted to write. One of our doctors suggested that I put Celest on a medication to help her "focus" on things and increase her attention span. I assumed (correctly) that this meant we start her on a dose of a drug generally prescribed for kids with ADHD. Celest can get pretty wound up at times and is very impulsive, so I thought I'd give it a go.

The medicine didn't really do anything for her, so I took her off of it. Next appointment, the doctor seemed a little peeved that I'd taken her off the med without giving it a full month. She prescribes a new med that does pretty much the same thing but that affects the brain in a slightly different way. This medicine has caused her to have at least one sobbing episode per day (I mean truly sobbing her little eyes out--she looks genuinely depressed and it hits her out of the blue so she also looks a little perplexed) and one "attack" episode per day. She has clawed my arms, pinched/clawed herself, and pinched and kicked my mom. She also stayed up until 9:30 am this morning. She was up until about 3 or 4 am the night before.

I'm thinking this medicine is not a keeper either.


The girls turned 12 this past Monday. We visited with my mom, dad, sister, her fiance, my niece (Violet), my little brother, my aunt, and one of my nephews. The girls had fun for the most part, but they can't resist the urge to run through the house and try to get things that aren't theirs. That's what they do at pretty much any house we visit though.

They played in a little wading pool with Violet and Mary. Poor Violet wanted to "swim like them" but she is just three and much smaller than the girls. The girls kept swirling around Violet like sharks circling their prey. It was kind of funny.

When we got home that night I had to go to the bathroom (I know that may be too much TMI, but it's relevant to the story). While I was in the bathroom I heard this sort of swishing sound. I thought it must be Lotus stimming with something (she likes to rub over textured objects and make repetitive sounds). When I opened the bathroom door I saw locks of hair scattered all over the floor and the counter. I let out an involuntary little shriek, which made Celest cover her ears. Her ears which I could now clearly see because she had chopped most of her hair off.

I guess since we made it to age 12 without having the childhood rite of "self-haircut" we did okay. She sort of styled herself a femme mullet. I trimmed it up the next day and it looks okay, if asymmetrical.

I think that is most of what I wanted to write about. I've got lots of other things on my mind, mainly about the girls getting older and more difficult to take out in the community. However, that subject depresses me and I don't really feel like going down that thought path at this moment.

Andrew Wakefield

The most recent update on the Andrew Wakefield "controversy".

I have met Wakefield a couple of times, once at a biomedical conference and once at a rally in DC. In person he is nice and takes time to talk to all the parents who besiege him with questions and requests for autographs.

I find it hard to believe that because he paid five pounds (less than $8) to some kids for blood samples and failed to disclose a potential conflict of interest before a study was published that ipso facto his research is garbage.

Before you pull out the line that "new studies have proven there is no link between autism and vaccinations", show me the exact study. The ones from the CDC? Oh, the ones that said a link could neither be confirmed or denied and that further studies needed done. Or the ones partially researched by a psychiatrist who ran off with millions in research money? (more on that below) And the further studies just happened to say "vaccines are safe". Or the genetic studies that prove autism is strictly a genetic problem? Maybe, say, like being more susceptible to have autism, even if an environmental trigger needs to set the autism gene in motion?

Why do people who are not adversely affected by vaccines assume they are 100% risk free? "It didn't happen to me or my kids!" Ah, that proves it.

It reminds me of a conversation I had in high school with a friend. I said Jimi Hendrix was one of the most famous musicians and guitarists of all time. My friend's response: He must not be very famous. I never heard of him.

And what about this guy, Dr. Paul Thorsen? Now, he didn't pay kids pocket change for blood samples, so I can see why we would believe him. He just absconded with millions of dollars, said he'd "kill" to make his way, and, his research helped "prove" the CDC's statement that they couldn't find a connection between autism and vaccines. I wonder if he's been publicly harrassed, had his house burned down and lost his medical license? His specialty is psychiatry, so why he would be picked to head up this research is odd. Here's another story about him.
Wakefield was a pediatric gastroenterologist. He became interested in autism after treating numerous patients with autism who had odd yeast overgrowth in their intestines, symptoms of leaky gut syndrome, and live measles virus in their intestines (although the children had never had measles- only the MMR vaccine exposure to measles).
Also, if the other doctors originally involved with Wakefield were doing their due dilligence they should have found any conflicts of interest before the report was ever published in a prestigious, peer reviewed journal like The Lancet. Why did it take The Lancet so long to retract the report? Did they drop the ball on vetting the study and report or did they get flack for publishing something that might dare mess with the "herd immunity" (and annual profits for vaccine manufacturers and patent holders).
And Dr. Paul Offit, the biggest vaccine proponent around, certainly has a conflict of interest as he is a patent hold for a rotavirus vaccine. If he honestly isn't in it for the money, maybe he can donate all the profits from his book, Autism's False Prophets, to the vaccine injury compensation fund or to the CDC to study vaccine safety and efficacy. Or maybe he can join up with Amanda Peet and start up a fund to send all of us non-vaccinated or under-vaccinate "parasites" to a big island where we'll die off not only from lack of vaccination, but also because of our "faulty" genetics that cause us to be weak and susceptible to neurotoxins. Give natural selection a little nudge, if you will.

Ohio Revised Code

http://www.10tv.com/live/content/health/stories/2010/05/20/story-columbus-public-health-vaccinations-schools.html?sid=102

For some reason these stories never bother to mention that exemptions exist. I'm not saying that no one should get the vaccines, but in Ohio parents have the right to refuse or delay vaccination. It's written in Ohio Revised Code, but that's been conveniently left out in every story I've seen as well as the letters I get from the school every few years. I just write a polite note with my reason for declining the vaccine for my children. So far, all of the school nurses have been very understanding and nice about it.

People in general, however, tend to get more heated. If your child had seizures, broke out in yeast rashes all over their body for months, had putrid smelling diarrhea for months, became paralyzed, or died as a direct cause of vaccination, you might hesitate to get more vaccinations or vaccinate your other children. However, parents and family of kids who had no reaction to vaccines seem to feel that our tiny percentage of kids who suffer years or a lifetime of vaccine side effect consequences are a fair trade off for "herd immunity" to be maintained.

I don't want little Suzie to get that itchy chicken pox! Oh, yeah, I forgot, almost all kids still get chicken pox even with the vaccine. Despite what you may take away from this, I'm not anti-vaccine. I'm just pro-vaccine choice. Some of us who are "unfortunate" enough to have lost out on the genetic lottery and are sensitive to vaccine side effects have a right (well, in most states) to decline or delay vaccines. What should be taking place is testing that will determine who is most likely to have a severe reaction, then we can vaccinate accordingly. Just like tesing new borns for PKU is now routine, even though it affects a minority of infants, it saves lives. Vaccine adverse effects that can be narrowed down to certain genes could save lives and prevent severely debilitating disabilities.

Whether its the diseases themselves or something used as a preservative, if we could narrow down the possibility of adverse events the vaccination rate would climb.
Instead we vilify families who choose not to vaccinate or who "put their baby at risk" while they allow his or her immune system to mature before exposing it to numerous diseases and known neurotoxins.

If lead were a preservative in vaccines would you brush it off as nothing? I doubt it, since we don't allow it in paint. But aluminum? Ah, that's a neurotoxin just like lead. Mercury, oh that's okay, so long as its "trace amounts".
Traditional medicine says not to take colloidal silver, which has "trace amounts" of silver. They quit using silver in many medicines, such as nasal drops. It is still used as an anti-microbial, and it is safe most of the time. But why do they suggest we avoid silver in foods, supplements and meds? They have a good reason: argyria.
It just turns your body, inside and out, greyish-blue. And turns your nails brittle. And other such tiny problems.

Why is it that some known neurotoxins are okay and others aren't? Maybe because most people tolerate some well, while others are bad for enough people that they aren't deemed a necessary risk.

I don't know about you, but I don't like to think that my children or family members should be a necessary risk so that others might potentially not get a disease that in most cases isn't fatal.
Oh, and don't worry, it's usually people who have compromised immune systems (i.e. bad genes) who die from things like pertussis and mumps. You know, those who are a necessary risk. Just let evolution weed us out with disease. ; )
(yes, I'm being facetitious...)

Dentist Appointment

Celest's dentist appointment to fix her two upper front teeth is tomorrow at 9 am. I am not looking forward to it. I have to keep her from eating until we get there, which she won't like. Also, I have to take Lotus with me because tomorrow is a teacher day (or whatever they call it- teachers go to school but the kids don't).
Bah! I hope she doesn't get mad at me like Lotus did when she had her teeth worked on. I think she would hardly look at me and wouldn't let me sit next to her for three days afterwords.

Dentists and Psychiatrists and Allergists! Oh my!

Sure, I had to do a play on the famous Wizard of Oz phrase. Why, I don't know. It just seemed right...

The girls have started seeing a psychiatrist to address their sleeping issues. In the month leading up to our first appointment they were sleeping okay two-four nights a week and very little and sporadically the other three-five nights a week. Two of the Sundays Lotus stayed awake until 5 am. Not sure what it was about Sunday that had her buzzed up so much.

Unfortunately the medicine is an antipsychotic, which comes with a myriad of potentially serious side effects. Among them: tardive dyskenesia, neuroleptic malignant syndrome, high cholesterol, weight gain and diabetes. Nothing to worry about! (yes, that was a sarcastic remark) They are on a very low dose, so the odds of them experiencing one of these side effects is relatively slim. Still, I don't like any chance of getting them. However, sleep is a necessity for health and sanity, so we came to a time where I chose to make that trade off. Too many sleepless nights were getting to us all.

They are sleeping well now. We survived the blood draw to check liver function and other stats before being on the medicine for a while (though not without a fight).
The doctor prescribed an Ativan for Lotus to try to calm her before getting a blood draw, but it didn't work. I think she looked drowsy for about ten minutes, and then she was good to go. I think both girls have a ridiculous tolerance for sleep/calm inducing drugs. Needless to say, we were unable to get a blood draw. So I had to take the girls to Children's Hospital with a friend's help. Poor Lotus had to be wrapped in a sheet and held by five people in order to get the blood (that's probably from her dad's fighting genes- Thanks Thurman!).

Celest was able to sit on my lap and only have four of us holding her. :)
Lotus had a dentist appointment and it took three people to move her from the hall to the chair, where she was strapped to a papoose board (sometimes called a mummy board). She was fine the instant she was unrestrained. Poor girl. I hate having to restrain the girls, but they need certain medical care any way we can get it done.
I have to go to an allergist next month, in the hopes that it will help with my sinus infections and just my asthma/allergy problems in general. The initial appointment will take three hours. I imagine I will be poked with many needles during this time. Hmm...

I am finally down to two chiropractic appointments a week! This is great, since it will cut down on my overall appointment schedule each week. Last week between the girls and me I had nine doctor/dentist appointments. This week I only have three. Next week will be two or three I think. I'm glad for the break. I hate dragging the girls to appointments, since at some point I generally am literally dragging or carrying them (they each weigh 105 lbs now, so it's not so easy).

Celest will have to be put under anesthetics to have her two front teeth fixed. She chipped them when she executed a perfect face-plant off of a trampoline at school.
Anyway, that is what we've been up to the past month since I've posted. Nothing much fun, but our lives are getting a little order in them. For that I am grateful.

Friends Don't Let Friends Proselytize...

Actually, I don't consider what I do as proselytizing, but many people react as if I'm trying to tell them I'm right and they're wrong. Maybe subtlety is my problem.
Anyway, I've received threats from someone I went to grade school and high school with on a social networking site. I told one person I didn't like the phrase "short bus" to be used as a derogative remark. He got annoyed at my wording and snipped back at me, then I apologized. Then he apologized. Misunderstanding aside, we put it past us.
Then "coincidentally" (or so I was told), another "friend" wrote a vicious diatribe about how he hates overly sensitive people bitching about their "tard" kids. Why don't we just get over it, he asked, amid scathing remarks about these parents and his ignorant understanding of "waterheads". I assume he means babies who were born with "water on the brain" which resulted in mental retardation (by the way the new DSM completely got rid of the mental retardation diagnosis; it is going to be intellectual disability now).
Of course, that isn't the sole cause of mental retardation. He also pointed out that idiot was a clinical name for MR. Back in the day it was, along with imbecile and moron, it denoted a level of MR severity. Those words became degrading and stigmatizing, so MR was introduced. How long before the new label is common derogative slang? I will admit that intellectual disability doesn't quite have the ring that idiot or moron has; maybe we can keep picking longer phrases with less "appeal" to the lowest common denominators in society that choose to slur others with these words.
This one person isn't the inspiration for this post; far from it. He merely exemplifies the arrogant ignorance that is pervasive in this society. He probably says fag and n*gger to insult people as well. After all, according to him, "I ALWAYS win"... (ah, the mantra of the enlightened!)
Years and years of stares, pointing, and name calling have led me to my near-proselytization of friends, family, and acquaintances. Most people are nice enough to apologize or at least change the subject. The less polite go off on a tirade about how I can't tell them what to say, and "That's not what I meant anyway! I'm not making fun of people with disabilities!" I suppose the fact that making a diagnosed condition's name synonymous with stupid, dumb, ignorant, and gullible is inherently insulting is lost on these individuals.
Let's say you have diabetes. How about I assume that since you have diabetes you must be overweight, not exercise, and are lazy. Then I begin to call anyone who is lazy or overweight "diabetic". Would you take offense at the idea that I categorize all overweight and lazy people as diabetic?
How about if I assume that because you have are a single mother with a low income that you are a mooch, having kids just to get welfare and food stamps? "But I'm going to college," you protest. Well, I just think you're doing that to borrow student loans and keep the welfare coming. You're lazy and I know you'll never make anything of yourself. You're just wasting tax payer resources that people like me pay for.
I would sound like an arrogant bigot with her head up her own *ss, wouldn't I? If you think so, then maybe you see my point about using retard being offensive and demeaning. If not, you're probably a bigot.
There's hope for reforming bigots; they are generally bred out of ignorance and fear. I was quite the prejudiced, bigoted *ssh*le growing up. It took me several years to get all of the stupid prejudices I'd learned out of my head. So I'm not trying to be a holier-than-thou proselytizer. I'm just sharing my opinion.

Bigots

Ah, my favorite doctrine: bigotry. You've got to love their politician-like ability to repeatedly deny facts despite overwhelming evidence that proves them wrong. And the wholehearted way they fling themselves into conversations, which invariably become arguments. The premise they use to decide who "wins" an argument is who talked the loudest, interrupted others the most, and countered facts with personal insults unrelated to the topic at hand.
Yeah, they are a breed that is hearty and mostly resist the evolutionary developments of intelligence and tact. Mostly though, I am appreciative of how they make me realize that, despite always "winning" in their minds, they are generally sad creatures who alienate themselves from others as they stomp on civility and sensibility. Unless, that is, they have an AM talk radio host job. (not that all AM hosts are bigots, just that bigots who have fans generally preach from some sort of pulpit- be it radio, political post, etc.)

Sarah Palin Revisited

Old news, I know, but I haven't posted since this happened. Sarah Palin was very offended by Family Guy's Extra-Large Medium episode because a character who is a "Down Syndrome girl" says her mom was the former governor of Alaska. I'm assuming they chose to call her a "Down Syndrome girl" because the media referred to Palin's son as a "Down Syndrome baby" (which always irked the hell out of me).
Remember when Palin defended Limbaugh for his satirical use of the word "retards" to poke fun at liberals? That was funny- satire at it's best!!!
Here's an excerpt of a Huffington Post article with direct quotes from her Fox News interview:

Palin also used her platform to continue a call for the president to rid himself of his closest advisers. On Attorney General Eric Holder, she labeled his handling of captured terrorists -- "allowing them our U.S. constitutional protections when they do not deserve them" -- a firing offense. On Chief-of-Staff Rahm Emanuel, she said his comments calling liberal groups "f-ing retards" was "indecent and insensitive" and cause for his dismissal.

But the former governor went to great and sometimes awkward lengths to insist that when conservative talk show host Rush Limbaugh used the same exact term to describe the same exact group, it was simply in the role of political humorist.

"They are kooks, so I agree with Rush Limbaugh," she said, when read a quote of Limbaugh calling liberal groups "retards." "Rush Limbaugh was using satire ... . I didn't hear Rush Limbaugh calling a group of people whom he did not agree with 'f-ing retards,' and we did know that Rahm Emanuel, as has been reported, did say that. There is a big difference there."

But when Family Guy hires an actress who has Down Syndrome to play a character with Down Syndrome it is very offensive and insensitive. I understand her disliking the personal reference poking fun at her, but the satirical depiction of a girl with Down Syndrome shouldn't be objectionable based on her criteria that defended Limbaugh.

I am very sensitive when it comes to people with special needs being made fun of, and honestly, when I saw the preview for that Family Guy episode I thought that it would be offensive to me. However I didn't find it offensive. I am a fan of Family Guy, and I certainly don't find all of their jokes funny. So I am not defending them as a die hard fan.

They've had "autism" and "retard" jokes that didn't offend me either, though both of these conditions are much more personal to me than Down Syndrome. Besides all of this, we must remember that Family Guy is known for its offensive style of humor. They aren't going apologize for something that some find offensive. The makers would probably just tell you not to watch the show.

By the way, the autism joke was when Peter and Lois were role playing and Lois dressed up as Grimace. She said something about stealing hamburgers and Peter told her it was the Hamburgler that stole hamburgers. "Grimace is Ronald McDonald's autistic friend." It's kind of funny because Grimace is socially awkward and seems a little different than the other McDonald's characters. My only issue would be in putting the disability first: autistic friend rather than friend with autism. Still, I realized that I was watching Family Guy so I didn't let it bother me.

Sarah Palin and the "R" word

Sarah Palin's Poor Defense of Limbaugh


The only thing I really defended Sarah Palin for was when people talked about her "Down Syndrome baby" . She has a child who happens to have Down Syndrome. He is a child, not a label. I was happy to see that she was fighting against the misproper use of the word retard. Then she had to go and defend Rush Limbaugh for his use of the word. This, just a week or so after she demanded Rohm Emanuel be fired for misusing the word. Shared ideological viewpoints shouldn't be an excuse to overlook all bad behaviors and morals. Hopefully she'll realize this and call out Rush for what he did. Of course, this might upset Rush's self-proclaimed "ditto-heads" and make them not vote for Palin in any future posts she may run for...

A day in the life...

Not all of our days go smoothly, but some are a bit more of a hassle than others. My latest example would be about a month ago on a Monday. Lotus stayed up until 5 am, and she had a few messy accidents during this time. So my day began with cleaning poop off of the wall, bed linens, and child. Three times. It's like she waited for me to nod off. Or once I went to the bathroom, which gave her the perfect opportunity. I don't blame her so much, because I know she has GI issues, but still...
Then I got up at 7 am to get her and Celest ready for school. Once they were both on the bus I decided to take a nap while I had the chance.
At a little after 10 am I get a call from Celest's school. She's fallen off the trampoline and cracked her two front teeth.
Fast forward roughly half an hour: Lotus' school calls because they think she may have impetigo. She had rubbed her right cheek and her lips raw, which is a stim that usually comes in the winter time once she realizes her skin is dry.
So I have to go pick her up and schedule a doctor appointment. The appointment isn't until after Celest is home, so yippee, I get to take both girls by myself. That can be a job sometimes.
Turns out it isn't impetigo, just an open sore by her lip where she's rubbed the skin raw.
The week wasn't over yet by any means. Tuesday I had to take Celest to the dentist for her cracked teeth. A dentist visit entails a creepy device called a papoose board, which basically straps her wrists and legs to a board with thin velcro strips and a large velcro-covered body wrap that only her head and lower calves/feet peek out of. She does not like this at all. The dentist was able to put a numbing type of medicine and a coat of the rough edges. We go back in six weeks for a check up. (which Celest negotiates with me each day, "Six weeks?" "Yes." "Go to dentist." "Yes, in six weeks." Her response to that? "Five days.")
Wednesday goes by okay, but I find out that my cousin has died. We knew it was coming, but it still sucks.
My mom won't be able to help me with the girls this week either, so I have no one to provide respite.
Thursday is the first full school day that I don't have to work or pick anyone up early, so I actually get a little bit of work done.
Friday I go to work as planned. Then due to snow I have to leave early so I'll be home for the girls' buses due to a 90 minute early dismissal.
I guess that's more than a day in the life, but honestly that whole week felt like one really long, really bad day.

Life...

I'm sure other parents or caregivers of children with disabilities know what it is like, but that does little to help my mood or energy levels when things get difficult.
Earlier this week the schools had a two hour delay, but I didn't realize it until after I'd woken the girls up and got them ready for school. During the extra two hours we had, Lotus decided to become obsessed with sitting on the toilet and being naked. I could not get her to keep her clothes on. Once Celest was on her bus I tried frantically to get Lotus dressed before her bus came. I tried enticing, cajoling, then yelling, threatening, and quickly devolved into a banshee-like screaming loon. After I was unable to get her to put a single piece of clothing on I had to wave her bus away. I collapsed into a sobbing mess on the floor while Lotus happily caroused about the house in the nude.
I didn't sob just because I'd lost virtually all self-control and escalated a situation into an epic struggle, but because I knew this wouldn't be the last time it'd happen. I know that each time I lose control of a situation or can't do a "normal" thing with my children it makes me wonder how I will continue to be able to care for them into adulthood. If I can't dress an eleven year old, how can I dress a twenty year old.
To make my guilt and self-pity/hatred worse, in the middle of my tirade Lotus reached up her arms around my neck and pulled me to her to give me a kiss. Despite my mean, grouchiness she kissed me. (Or, if you want to be cynical, because of my bad mood she kissed me to get me to relent?)
I am a pessimistic, depressive person by nature. I have been as far as I can remember. It doesn't mean I don't enjoy life or love my children; it merely means I look to the negative in things first. Sometimes I am happy and look for the good in things; generally when I am this way someone else hops in to deflate my optimism.
I don't really know what will happen as time goes on. I hope to keep the girls with me. Parenting a child that will never be responsible for their own care or independent is an odd situation. I feel guilt at the thought of having to have my daughters in an adult housing situation some day, but I am sure that it will eventually happen. I don't think most parents feel guilty when their adult children move out. Worried, maybe. Relieved, possibly. But guilty? Guilty that they aren't doing all they could for their kids. That they are taking the "easy" way out. I really don't like to think about it, but the older my girls get, the closer that day gets. It is something that is difficult to talk about with other parents or professionals in the developmental disabilities field. It is so clinical or detached sounding when it comes from someone who will never be in my position.
I know others have done it before me, and others will do it after me. Still, that gives me little solace.