I have not been posting much here, it is not that life with the boy has been all hearts and roses (it has not) but my attention and time has been drawn to other projects of late and something has to give.
The boy has hit a proverbial wall, he is motivated by everything and noting at all these days. It seems like we are at a point in our relationship where he is craving human contact any which way he is able to get it,and that includes some pretty negative behavior that induces negative responses.
I am sure other parents with kids like mine can relate to what is going on at our house, the boy spends an inordinate amount of time on his xbox 360..we are on our third console in less than five years already.. and talking to people from all over. I guess when the boy is on xbox live he is able to be (at least in his mind) someone who does not have Asperger Syndrome or bipolar disorder and he feels somewhat normal or whatever normal is.
What frightens me is in the process the boy has been telling people very personal and intimate information about our family. He tells people about where we live and the type of car I drive, details about his siblings and has gone so far as to skype with some of his online “friends”. Problem is I can talk to him about this but other than blocking his xbox from the internet I am unable to police his behavior 24/7. I am afraid these interactions will continue to go on because he is often alone during the day and stays up until the wee hours of the night/morning. So what can I do? Until we are able to find suitable housing for him, absolutely nothing. I am working on the housing end of things hoping to find a place the boy will agree to stay without us. Due to anxiety the boy does not like to be alone for extended periods of time and I am certain any housing options will require us to hire an attendant to be in the house with him.
Something has to give, because I am turning into someone I am not fond of. I am finding myself becoming more and more detached from the situation with the boy, unable to deal with his tantrums and constant demands. I am not sleeping because he flies off the handle so easily and I am afraid of his behavior if one of his online “friends” gets him going over anything. I am also working on finding something for the boy to do with his time as opposed to spending it all online. One of my thoughts is that we will start a small cottage based business making a few items I am getting good at doing…like cake pops and I can have him help me as well as maybe sit at a booth at a few local farmers markets. One or both of us has to take an online food safety class and go through a few hoops to get licensed and certified..I am willing to go this distance to get him offline and maybe into the real world
I am not used to getting many comments here on my little site. Maybe this has something to do with the fact that I rarely post. Let’s be real here, life has this rude way of interrupting my creative side, I really would love to post more often, but my kids might have other things to say. However when there are comments, even from the people I bribe to read my site, it is very exciting in a weird and geeky way. So where I am going with this is today I took a look at the site and saw there were actually comments in my spam folder here on WordPress.com. As per usual most of them were just from sites trying to get me to buy their services by letting me that my blog is not getting as big of an audience as it should and blah blah blah..but there was one and it appears to come from Indonesia (since Indonesia is the only country highlighted on the little map today) calling me out for my spelling. OKAY…so here it is
“certainly like your web-site but you have to check the spelling on several of your posts. A number of them are rife with spelling problems and I find it very troublesome to tell the reality then again I will certainly come again again.”
HMMMM is the reader trying to say that my spelling sucks or the proofreader here on WordPress is at fault? I mean I would NEVER spell anything wrong at 1:00 in the morning while I am in the midst of a full blown attack of insomnia…NEVER…Maybe it is just me, but I am not sure if I would put something like this on a person’s blog…and what is this crap about reality? You know my reality might not be pretty and it definitely shows signs of insanity but it is my reality. This is when I remind myself that comment was in the SPAM folder and is probably a thinly disguised ad for some service that will attempt to rip me off if I click on the link..but still a comment is a comment so time to get vigilant about my spelling ..
This morning I went to the pharmacy to pick up 3 prescriptions for the boy. Up until very recently this was not really a task I worried about since we are required by our health insurance plan to fill any long-term medications via a mail order pharmacy or risk paying the full amount of the medication cost. The reason I am once again filling prescriptions at the local CVS is due to the fact that his med managing psychiatrist dropped us from her practice because he is too old for her child and adolescent practice since he is just over 18 and a high school graduate. This good doctor promised to help us find a new doctor in the area who could pick up where she left off. Truth is that never happened, she dropped us and despite my sending emails to her to discuss what our options are she never replied,leaving me to scramble to find a replacement. This task sucks
I reached out to several physicians in our area to see if they are accepting new patients and the answer was overwhelmingly NO. A few of the psychiatrists who actually called back told me that our former doctor was notorious for doing to her older patients exactly what she did to us and said something to the effect of wish I could help but sorry. The question turns to where do I go now? The boy has medications that need filling because these medications are his lifeline to a somewhat “normal” life. These medications allow him to function at home and not be locked away in a hospital trying to sort himself out. I asked my pediatrician to help us out in the interim and while he is happy to do so, he also let me know that he is uncomfortable writing prescriptions for these medications for more than a couple of months..we wore out his welcome.
Here is another reality, once a child reaches the age of 18 mom can no longer make the phone call to the doctor”s office and make appointment for their children. Now explain to me how once expects an NT child to adjust to this reality quickly? My older child does not use the phone, this child communicates more via text than she does by speaking to anyone and that includes me..thankfully I am text savvy….so explain to me how they expect an adolescent boy with asperger’s syndrome to make a phone call, be put on hold and then make an appointment? MY POINT EXACTLY…the boy and I actually had a rather intense conversation about this because he just could not comprehend why he was not able to simply walk in to the place we are trying to get into and they will just see him. Trying to reason with him just ended poorly for both of us..sigh. The boy finally called but as of this week they did not call back, they “lost” his paperwork and we were forced to start the process all over again and now we wait another 5-10 days for them to call us back. So for now we wait..and wait ..and worry that next month there will be no way to fill his prescriptions.
Today was yet another reality check…when the prescriptions arrived, so did my portion of the costs…a whopping $170 for 3 medications. Due to 2 unexpected trips to the emergency room, a preplanned dental surgery and doctor visits etc, my family exhausted its medical flexible spending account for 2012 and hence the $170 came out of my pocket. You see the boy’s medications cost my family $2040 per year to fill thanks to 1 costing $150/month. Until this year we were able to set aside up to $5000 in pretax Healthcare Flexible Spending account to pay for his medications, braces, eye glasses, surgery etc..we just found out that amount has been reduced to $2500 per year starting in 2013. You see my middle class family now is unable to set aside money for medical expenses to cover all of our needs. This is Obama Care reality, I get taxed more, have to pay more and am taking home less and less. The boy qualifies for less ad less this my friends is our reality
I remember exactly where I was 8:45 AM on September 11, 2001. My baby started her first day of school and was looking rather adorable in her new dress and little Mary Jane shoes. Her school was a bit of a distance from our house and I was not sure if I was better off staying close by or heading home to get a few chores done before she needed me to pick her up and the other kids got home. I stood with a heavy heart trying to hold back a few tears as she walked into the school building with all the other little preschool and kindergarten children and waved bye-bye. Into my car I got only to get a call on my cell phone…one of the other children in the family was missing her lunch and did not have enough money on her lunch card, I needed to drive to her school and bring money ASAP
I stopped and got coffee, turned on the radio and listened to the verbal banter between the morning jocks all the while noticing what a beautiful day it was. No need for tears, the baby starting school I told myself is good for everyone. 8:47 AM the music on the station just stopped…and the news jock came on the air sounding somber, a small airplane he said reportedly hit the WTC Tower One. There were limited reports at that very moment but the guys tried to lighten the mood on the air. I pulled in front of the kids’ school, walked in and the secretaries in the office asked me if I heard what happened in New York. I told them exactly what I knew at the time a small plane reportedly crashed into the WTC. In that moment it did not seem like this was anything to be too afraid of. I left the money and back into the car I got.
On September 11 of 2001 the boy was in the hospital. He had an epic meltdown a week or so prior and pulled a butter knife out, threatening one of his siblings. Normally this activity was something we grew accustomed to to..the boy melted down, we restrained him or disciplined him and his response generally included some intense and drastic behavior/acting out on his part. This particular time I called the doctor. This time the doctor said the boy needed to be in a hospital. So I drove the boy to the emergency room of a hospital north of where we live and they admitted him. On September 11, the boy was close to his discharge date but the events of the day made the staff change their minds about allowing any of the kids to go home. They were in a safe place to discuss and act out what they heard and saw. Emotions were raw in my family during those days. Looking back I am grateful the boy had a safe place to find out about the 9/11 tragedy because honestly I am not sure if he had the maturity to process the images of what was happening.
I got back into my car and was startled by a loud and unfamiliar sound coming from the radio. The station playing at the time was a pop station, not a serious news outlet, but CBS News interrupted the broadcast with news of a second plane hitting WTC Tower 2. The world suddenly stopped. The clowns of the morning show were quiet and the proverbial music died. The news caster announced we were under attack. My car pulled into the driveway, and as soon as I turned the television on the images overwhelmed me. They kept repeating the scene over and over, I know I was unsure what this meant. Were we going to survive the day? Were there more attacks about to happen? Who Did this to us and why? How was our friend living and working in NYC doing?
Instinctively I wanted to get my kids, bring them home and hold them close. I did the right thing for my family and left them in school where they were safe from watching television and safe from knowing what happened. The media saturated the airwaves with pictures, videos and news of the attacks and my kids ranged in age from 4 through 10 and I felt the need to protect them from the news even for a short while.
11 years later, I recall that day as clearly as if the attacks happened yesterday. I do what I can to stop the boy from perseverating on the events of 9/11 or the people he thinks are still responsible. The boy refuses to fly as a result. We managed to get him on a plane to Walt Disney World 2 summers ago but after that he refuses to go even near the airport. I can not get him to travel down to New York City or Washington DC because he still fears something bad will happen. The other kids in the family will fly but they only know the new “normal” in flying in the days since 9/11.
I pray that we as a nation never forget that fateful day. I pray for the Troops who are deployed and protecting our freedoms and I pray that God Bless the USA. Hug your children, teach them about tolerance and peace and pay homage to those who lost their lives innocently, and those who gave their lives trying to help save them on that sad day 11 years ago.
Change is good and necessary at times, well at least that is what I keep telling myself.There is a lot of change going in my life, some I have control over and others..well not so much. I have decided to embrace the changes and see where the proverbial winds take me. So, on that note… I did indeed change the title of this little site and I now own the domain as well so if you are looking for me ..http://motherhoodthroughaspergerlenses.com..now if I could only figure out how to brighten up the site with pictures or something …what has not changed is my limited attention span and haphazard ability to keep up with my busy life…here’s hoping that will change as well.
The reason I decided to change the title of my site because the BOY is not really a boy any longer, he is in fact a young man. What does not change is I am still his mother no matter how old he gets and due to his special needs I will always be parenting him some capacity. This is true for all kids, even when they are adults we still need to mother them just not as intensely as we do when they are young.
I am considering registering this site on Blogher.com…scary because as I said before there is some comfort in anonymity, at least here I am comfortable with the 5 people who read my site on blogher.com that number could triple not sure if I am ready for more than 15 readers! I have already tested the waters and taken the plunge, the title of this site is the title I came up with for my post over there…21 people actually read what I wrote and I am not sure if I know any of them…Not sure how I am going to handle my life now that I am famous (by the way whatever friend of mine read me 21 times thank you the check will be in the mail soon) now what I need to work on is making sure I do not just rant and watch my grammar.
I took the plunge today and posted for the first time on BlogHer.com. It was a very scary thing to do and felt like falling off a cliff but I managed to get it done, not well but done. I really enjoy my relative anonymity here with a rather small following but now it is time to take the proverbial leap forward. Who knows if anyone will listen, but I plan to keep plugging away.
No surprises, the boy is my subject of choice. This time I wanted to talk about how it feels being isolated as the parent of a child with Asperger’s syndrome. I know at times I hinted at this here on this blog, and make light of my ups and downs in this life with the boy but I am not sure how to accurately express the loneliness and isolation that often follows this type of diagnosis.
I will be honest and admit that once I was “shunned” or more accurately left behind by parents who were unable to deal with our child’s situation that I became angry and resentful. I know I withdrew further and further away from my community and found life easier as far away from “those people” as possible. I knew then, as I know now that my child is not perfect. In fact the boy is quite difficult to deal with on a minute by minute basis, more so than other kids his age (past and present) but I was angry this was happening to me and my family. I was horrified that people saw us as the family with that “kid” who throws himself on the ground and acts weird. I was really mad when the parents looked at me with pity in their eyes, not quite knowing what to say or do and so they simply walked away or retreated. As a result, we are horribly disconnected from our neighbors and community, we feel as though we do not belong.
There is no turning back the clock, there is no going back, we must move forward and I hope that by sharing my story someday, someone will realize that there is a need for support in families with special needs children. Please do not pity us, but rather befriend us. My wish is for people to realize that while our children are a large part of our story, they are not entirely who we are as people. Count your blessings, for you never know when your own life will cross paths with an autism spectrum disorder. Please, I beg you, never say to the mother of an Asperger’s child “but he looks so normal” or “he will grow out of this” nothing makes us more enraged than those words. Please get to know mothers and fathers of these children, they need friends, they need support (inviting said parents out for coffee means more than you can ever imagine) they need time away from living with Asperger’s Syndrome.
Not sure if it is just me, but keeping up with the boy these days is a never-ending saga worthy of its own reality show…just kidding there is no way in you know where that I would ever allow myself on television …but…his day to day life would be a ratings grabber at least for the first few episodes. I have watched a few episodes of the reality shows on cable and all I can think is damn the producers would not have to script any of the crap that comes out of my boy’s mouth. You want absurd? Yeah we got that and then some.
The kid has the impulse control of a flea and between you and me, I think the flea has bit more of the control. Everything is instant gratification. The boy “NEEDS” to get soda because he is “repulsed” by water, he ‘NEEDS a Macbook pro” …that tidbit is a post all to itself. He also uses his shopping money to buy iTunes gift cards because he thinks of it as an allowance and not what it is actually intended for , you know getting enough food to feed himself because he will not eat the healthy food I try to “poison” him with. The lack of impulse control also applies to what he says and let me tell you the things he says can be quite outrageous..I am just too tired at the moment to accurately repeat some of the more controversial words that spew from his lips.
Compounding the issues right now is the fact that I am unable to get his current psychiatrist to respond to me for a refill on his medications or for a referral to a new doctor who sees adult patients. My emails and phone calls go unanswered and I am getting a bit discouraged at this point. My boy gets unmanageable when he is not on his medications and we are starting to see this rear its ugly head lately. If this crap keeps up, I am the one who is going to need medication and a long rest on a quiet island with internet that only works like 2 hours a day and text messages from the boy are not allowed!
The good news of late is that we have won the battle to have the boy declared disabled after several rejections by the Social Security Administration and so now he is technically “independent” (read he lives at home, plays video games and does nothing right now). The bad news beyond his behavior is they gave him what felt like a boat load of money. This is another post for tomorrow as right now I am way too tired to go on…but I will say that he was like a kid in a candy shop and went on a spending spree that I could not control. Those hijinks tie right back into the impulse control issue mentioned above.