Thursday, April 23, 2015
Some months back I began dating someone. He lived a couple hours drive away and did not have the same days off as I did. It really worked out perfectly. I would take a day off work and we would spend all day together before I went to pick up the kids. It got serious. I fell in love.
I was upfront about my children from the beginning. When I first met him we were just friends talking. I had told him about the autism, and about some of my youngest daughter's struggles before we ever entered into a relationship.
I guess the truth is that you can never prep someone for what we go through everyday as a parent of special needs children. I forget that something that I do each and every day is weird to someone else.
When he asked to meet my kids I explained to him how big of a deal that was. I was extremely hesitant. I tried to let him know that it was not because of him, but because once I introduce someone to my daughter's life she expects that person to stay around. It is tricky with any kids. It is trickier with special needs kids. He insisted that this is what he wanted.
We met at a park. It was familiar territory for my kids and they played like they normally would.
I had made a picnic lunch.
They kicked around a soccer ball, played twister, and ran around crazy. Normal kid stuff.
At one point L had a mini meltdown about having to share my attention. It lasted less then ten minutes and did not involve screaming, kicking, or running. By my standards the day was a success.
He was nervous. Who wouldn't be? I thought everything was good beyond him being nervous.
The truth is that I do not read people well.
We texted when he went home (calling with kids around does not work out well). He brushed me off the next day. I let him. I figured he just needed time to process. A few days later he told me everything was fine. I find it ironic that that was the last time he communicated with me.
I haven't heard from him in months.
I learned that you can never truly have someone understand your everyday normal until they see it. I also learned that I would much rather have someone tell me they were done rather then just walk away. It is a bit cowardly in my opinion.
The truth is that I do not blame him for walking away. There are days that I wish I could do the same. I understand and respect his decision. The last thing I would want is someone around who couldn't handle or appreciate my world. I am sad that he could not even say goodbye.
If he couldn't handle a mini meltdown at the park there is no way he would have survived the epic chaos that happened since then. The meltdowns that resulted in L changing schools, loosing her afterschool care, loosing our apartment, and a five day ER stay because no one would admit her to inpatient care.
A large part of me knows all of this would have happened anyway. I mean it happened before, so it happening again is not a big surprise. We were leading up to it anyway. Yet, I feel guilty that letting her met this guy, someone she saw as a future dad (not that I ever put it that way) and wonder if having him walk so easily out of her life was the trigger for everything that happened after.
So how do we balance it? Do we just not date? Do we date with no possibility of it moving forward? Or do we move on hoping that eventually we will find a person that will understand our everyday crazy and hope that we do not screw our kids up too much in the process.
I suppose I should note that I have been divorced for over five years now. During that time I have dated a little, but not a lot by anyone's standards. During that time this is the only time I have introduced my children to someone.
Wednesday, April 8, 2015
The current estimates of male to female diagnosis rates for autism spectrum disorder (ASD) is 5.5 (Dworzynski, Ronald, Bolton, & Happe, 2012). This means that for every five and a half males who are diagnosed with an ASD one female is diagnosed. It has been estimated that rates are closer to 2.5 to 2.2 (Dworzynski et al, 2012; Hill, 2009), which would mean that only half of females with an ASD are being diagnosed.
Russell, Steer, and Golding (2011) found that if both males and females presented with the same symptomology of ASD males were significantly more likely to receive a diagnosis. This effect was found for individuals with classic autism symptoms as well as higher functioning autism symptoms, which clearly shows gender bias in diagnosing females with an ASD regardless of where they are on the spectrum. This bias may even occur before the diagnosis process, with females being referred for diagnosis less than males (Russell et al, 2011).
While the bias may occur across the entire spectrum, one area at higher risk is girls who have an average or above average IQ score (Kopp, Kelly, & Gillberg, 2010). It is interesting that the diagnosis rates of Asperger's syndrome, when looking at both genders together, is approximately a third lower then classical autism (Fombonne, 2004). While it is possible that Asperger's syndrome does occur less frequently in the general population, it is also possible that individuals with Asperger's syndrome, regardless of gender, are being missed in the diagnosis process. Additionally, the decrees in prevalence rates could be significantly impacted by females with higher functioning and average or above IQ scores who qualify for an ASD diagnosis, but do not receive an appropriate diagnosis (Kopp et al, 2010).
One possible reason for the low diagnosis rates of females on the autism spectrum is a different presentation of ASD symptoms across genders (Hill, 2009). This can be seen specifically in the presentation of special interests. Males with Asperger's syndrome tend to hyper focus on a specific topic, which may be seen as extremely unusual such as train schedules or vacuum cleaners. Females with Asperger's syndrome tend to escape into fiction or into imaginary worlds inside their head (Hill, 2009).
Autism spectrum disorder is still thought to be more common in males than in females (Dworzynski et al, 2012). However, the large disparity between genders is being though to be less of a biological basis and more of a barrio for females in receiving a diagnosis (Kopp et al. 2010). It is concerning that that it takes females an average of five years, after first seeking help, to be appropriately diagnosed with ASD (Kopp et al, 2010). That would mean that parents who have become concerned enough to seek help for their ten year old daughter, while in fourth grade, would not receive an appropriate ASD diagnosis for her until she was entering high school. More needs to be done to help professionals identify girls who are on the autism spectrum, and to do so in a timely manner.
Dworzynski, K., Ronald, A., Bolton, P., & Happe, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child & Adolescent Psychiatry, 51(8), 788-797.
Fombonne, E. (2009). Epidemiology of Pervasive Developmental Disorders. Pediatric Research, 65(6), 591-598.
Hill, A. (2009). Doctors are 'failing to spot asperger's in girls'. London, UK: The Guardian, April 11, 2009.
Koop, S., Kelly, K. B., & Gillberg, C. (2010). Girls with social and/or attention deficits: A descriptive study of 100 clinic attenders. Journal of Attention Disorders, 14(2), 167-181.
Russell, G., Steer, C., & Golding, J. (2011). Social and demographic factors that influence the diagnosis of autistic spectrum disorders. Soc Psychiatry Psychiatr Epidemiol, 46, 1283-1293.
Tuesday, April 7, 2015
I first heard about the AngelSense GPS Tracking Device from the blog Autism Daddy. At the time L was just released from the ER, she was completely unstable, but they could not find her a bed in an inpatient hospital.
L was running more then three times a week. I was loosing track of her for more then 30 minutes at a time. She was suicidal and prone to risky behaviors - and she was running on the side of busy roads (in SoCal try and not find a busy road!).
I needed to try something and the AngelSense device looked perfect.
This is where I will interrupt my review to say that I was looking at this device for a gifted child with Aspergers who's IQ score for visual spatial ability is in the 99th percentile for her age. I say this because she is a kid who can figure out things that should not be figured out. My review is based on this.
If you are looking at this device for a child who is a bit more compliant then I would recommend that you check out the review by Autism Daddy - it will probably be more relevant (of course you can also finish reading mine).
The device website is great. You can chat with a customer service representative, all of which are autistic parents who are working from home. My first area of concern was that the device was secure. I was instructed that the device would securely attach to the inside of a pocket. I figured that with thirty days to try the device I would let L test it out. If she could detach it then I would return it - no loss on my part (all good intentions right?).
The interaction for the device is pretty great. It is a website that can be saved like an app on your mobile device - or activated directly from the website. You can call the device to hear where your child is, and you can receive updates when your child leaves or enters a location. I loved knowing that L left her Grandma's house, saw the bus schedule, and saw that she made it to school. The information was text to my phone and I did not have to worry.
About nine in the morning I decided to see how the dial feature worked. It didn't. I checked into the device and found that the signal could no longer be located. I honestly thought that maybe the signal was blocked by the school building.
No such luck. Less then four hours after attaching the device to the inside of my daughter's pocket she ripped it out and flushed it down the toilet. The device is not waterproof - at all!
It was extremely easy for her to detach the device. The tracker is put in a cloth case.
On both sides of the case their are little pins that go through the device and secure it to the pocket.
The pins themselves are only detached by a strong powerful magnet. It is pretty impressive.
What is not impressive is that the cloth itself is venerable. If you attach it to the inside of the pocket then the cloth is easy to rip - L is 10 and she apparently ripped it out with her bare hands without any problem. If you attach it to the outside material of the pocket then you can see the metal pins. It also could be cut out pretty easy, and depending on the material of the outside of the pants, it also could be ripped out. The case itself is cloth, so even if the pins stay to the clothes, the device's pouch could pretty easily be damaged.
L complained that she felt self conscious of having the device on her - which is why she flushed it down the toilet. However, she ripped it off because it was causing sensory problems.
With no device to return I paid the company a hundred dollars and they cancelled my service. The customer service was nice, and I think that AngelSense can do a lot of good for a lot of people. I wish I could write a raving review - I really want to. It would be a lie. For higher functioning children this device will, for the most part, be a waste of money. My main concern for children who are more compliant, and would not think of ripping the device out of their pocket, is that it may cause sensory overload.
The interaction with the device is great.
The updates from the device is great.
The security of the device on the person is severely flawed.
The durability of the device is almost non existent - it lasted less then four hours for us.
There is a concern of the device causing sensory issues. This is not a problem if the device is placed in a backpack - but what child takes their backpack when they wonder or run????
The company is great from my experience. I think the line could expand to something that would be more usable for other families.
L destroyed the device at the beginning of the school day. At the end of the day she ran. Thankfully her new school is better equipped at handling the running and she was ok. I, however, was still on the lookout for something that would better help us.
Friday, April 3, 2015
I have recently been reading the book AsperGirls by Rudy Simone. One aspect of the book is the concept of burning bridges.
I bring this up because it explains where I have been. Sometimes life gets so overwhelming, or changes so much that there is nothing I can do except to walk away.
When I was younger I would walk away and never look back.
As I have gotten older I try very hard not to do that anymore. I realize that just because I hate my apartment manger I will need the reference for another place to live.
I know that even though a job may not be working out, that I will need to keep at it until something else comes along.
I know that even though I am too overwhelmed to keep up with my blog that I will want to come back. You may even say that I will need to come back.
At the same time I will also need to leave.
The truth is, as much as I try to be "normal" I am not.
Currently our family is in a state of transition. L has been having a bad go of it the last few months. I mean a really bad go at it. This has made it hard on the whole family. It has also caused behaviors to show back up that had all but disappeared.
Yesterday, I had a talk with J about looking at another person's point of view. I told him that I respect that he was having a hard time dealing with the situation. I told him that I completely understand that. I also told him that I was also having a hard time dealing with the situation, but that I was "being strong" because what else can you do. I also told him that if he continued to yell and scream and carry on like he had started doing that he couldn't expect me to calmly take it. If he drops trash on the ground I will remind him to pick it up. If he drops a lot of trash right on the floor then I will have to remind him a lot to pick it up, and will make him pick it up because we do not drop trash on the floor. He calls it nagging. I tell him that he has more control then this and I wish he would start choosing to use it.
Then I looked at him and reminded him that he was not the only person with Asperger's in our family. I reminded him that everything that he dealt with I dealt with also. Then I also dealt with his and his sister's Asperger's, and his other sister's SA. I also deal with all the parent things. I basically told him that I put up with a lot, and I reach my limit also.
Perhaps it was just a weak moment where I wanted him to appreciate everything that I do for him, how hard I work to keep myself under control to parent them. Mostly I just wanted him to stop picking a fight every time L gets out of control - I can't handle both. It is also not fair that he tries to get the attention when she is out of control AND when she is in control expects me to listen to him for hours and hours and hours and hours.