As much as I did not want to, we had to apply for disability benefits at the Social Security Administration. We knew the initial outcome was the boy is denied benefits and lo and behold that letter promptly arrived in the mail. At the present moment we are appealing their decision while trying to encourage the young lad to find employment anywhere that he can. The problem is right now he is not enjoying his current living situation with his father in another state. I cannot wrap my head around the whole reasoning behind this thinking because when he is home the boy likes for us all to know how much he dislikes our company and provides a list of reasons why we suck. However the moment he arrives home with his dad he almost immediately calls me asking when I can drive there to pick him up…

As I have said before the BOY has been Diagnosed with Aspergers Syndrome as well as early onset bipolar disorder. Independent of one another the two disorders require a lot of care and advocacy,together they are simply exhausting physically and emotionally. What is the most troubling to me at this very moment in time is the continued lack of understanding and what is worse is a total lack of support in the community as well as at a state and federal level.
We have young people marching and protesting in our cities, voicing concerns regarding a lack of jobs, increasing student debt, foreclosures camping out and sucking up public funds to maintain their protest. While I have some sympathy for their cause, most are able bodied kids who obviously are bright enough to get into college and bright and charismatic enough to band together to protest a cause they believe in to me these kids are coming off as whiney. If you want to do good find a way to band together to use your education, think about going to a state or pubic university to cut down costs, attend a community college for 2 years but stop whining.
The first services usually attacked in a budget crisis are essential services like police, fire, teachers and then they go into human services. While there are some people in the bureaucracy of human services who are taking advantage of the system there are others like our family who are falling through the cracks. Actually in my opinion there are more cracks than wood available to kids like my son who are in need of help to become independent citizens.
Because the Boy has a diagnosis of Asperger’s Syndrome, he is denied services by our state’s department of mental health. You see in their eyes the only diagnosis that matters is Asperger’s. That was wonderful when we were fighting to maintain and keep an IEP to suit the boy’s educational needs, it does not help me now when we are caught in no man’s land basically between a proverbial rock and a hard place. However the story gets better…with the BPD diagnosis and the fact the boy is quite high functioning he does meet the requirements for the DMR to provide services. SO at the moment I have a boy who has graduated from high school, is no longer in his amazing program and has decided that community college is too much to handle.
With too much time on his hands the boy is finding he no longer has a lot of access to the friends he made in school and has decided his family is his source of entertainment. You see if there were funds available to sponsor a jobs training program or to get the boy to a day treatment program that would be great. There are however no funds available for these endeavors.
Our family has been advised to keep the boy on our health insurance plan for as long as possible, to continue to support him until he applies for SSDI or Social Security Disability Income which will be a long and drawn out process because he will be denied and then the lovely appeal process will begin.We may even have to hire an attorney to help us. This is definitely not what we want for our son.
We want money to stop going to babysit these occupy Wall Street nitwits and make them move their tents and donated food and clothing to someone’s back yard,take the money being spent and put it to good use and help some people who need the help. The only government assistance we ever received was the free public education the boy is entitled to like every other student. I even took the boy’s siblings out of public school and paid tuition for years. I want an opportunity for the boy to be independent or at least to have somewhere to live that is not my house forever. I want people to understand that we are responsible for our child, we do not want him to end up depending on a government check every month, I just want to find a few services to help my kid that are not going to bankrupt me. Is that asking too much?

Last night when I heard the engine of the car turn on and actually witnessed the car (containing the boy and his beloved possessions) drive away I did a little dance. Ok, going to admit that I cranked up iTunes and played Kool and the Gang’s “Celebration” a couple of times while fist pumping, then I posted the video on my Facebook page announcing my joy to the world all while doing said dance. I can not believe the boy is gone for a couple of days. I really can not believe he is about to start college and I REALLY can’t believe how quiet is here now. The feeling I have now is almost like when the kids were babies and did something out of the ordinary like sleep through the night. Back in those days, I would immediately think “what is wrong” there is no way this child just slept throughout the night and then proceed to take their temperatures or make sure they were still breathing. After I assured myself that the kids were indeed alright, I would find myself in a bit of a funk because I usually did not know what to with myself when I had free time. This my friends is one of those moments. See, I am here holding my breath, hoping and praying that everything just goes smoothly. Hoping that the boy does not have a melt down and profess that this was the worst idea ..ever or find a way to blow it all off.

I pray the boy knows how incredibly proud of him I am at this very moment with all kidding aside. It took a lot courage and strength for the boy to make this transition, tough enough with NT kids but for people with Asperger’s this is monumental. Now back at home I am grateful that it is my day to drive the carpool for the younger sibling(s) school and that the laundry looks like a tornado took at least 3 passes through because for the next couple of days I definitely have something to do to keep my mind off all things boy.

I have to say the worst damage my family suffered was the loss of our electricity, phone, cable and internet for just a few days. That was fine for me, but the boy is whole different story. I did everything possible to prepare for the storm like turning the fridge down the night before, taking in the outdoor furniture, making sure we had a three-day supply of food, water, candles etc… What I did not think about was how losing the power was going to affect my son. The poor boy did not take too kindly to siting in the dark and actually having to find a way to communicate with his family or to stay out of the fridge. The boy has his own routines that include a healthy dose of gaming, lurking on the internet, responding to Facebook posts, watching television and eating. Not a bad life for a young lad, but when that all suddenly is not at his beck and call we have a problem. Every passing hour brought on more stress and more anxiety for the poor kid and he showed us by being a mean and cranky brat who paced back and forth begging to use whatever device he could to get on the internet.

Thankfully the lights came back on in the wee hours of Tuesday morning and back to our normal we returned. The next morning I was reading posts from various friends on Facebook fretting about the lack of power and I got to thinking, how did we survive before the digital age? I know I have been through a number of black outs in my life time and managed to survive. Yeah it sucks having no phone, but who calls anyone these days? This time we still had cell phones so we could text the person on the couch next to us instead of having a conversation. My internet was down along with the power but I was still able to go out to the car and turn on the radio to catch up on the news and the weather and have some connection to the outside world. When the boy came up to me complaining that there was nothing to do, I suggested to him it was a good time to pick a book and (dare I say it?) READ. I know foolish suggestion but he explained to me that he could not read because the computer was down. Now I said this as I was curled up with my NOOK trying to finish a book I had recently purchased. This was after I decided to stop playing SCRABBLE on my iPad and trying unsuccesfully to get on Facebook. Our dogs were even bored after a few hours of no lights, so much for trying to go analog.
Normally we have at our disposal an arsenal of devices to keep us all entertained such as smart phones, PSP, iPad, the usual suspects like TV, computer and of course an old-fashioned radio that operates on batteries (with the round dials, an antenna and actual numbers that are not digital) Everything and anything to weather the storm. It just sucks when they do not work as well as they are supposed to. Here are a few facts, iPad is a battery hog and although it provides fun things like internet connection, the 3G does not work oh so well when there are lines and towers down and it loses its charge at a rapid rate when you are looking for information. iPhone has similar issues but is easily charged in the car, the radio was our best line of communication with the world. Another fun fact, if you plan to charge any of said devices in your car while the sun is shining put the air conditioner on, or shield the device from the sun. iPhone gets hot when exposed to the sun and will lock itself down until it is cool enough to operate. I learned this fact the hard way…don’t ask.

I am following a blog written by Mommabethyname these days. Like me this author is writing about the trials and tribulations of being a mom in a sometimes overbearing society. You may have seen her post about why our parents put us to shame( it has been featured in the Huffington Post and I believe on Fox). This piece just spoke to me as I connected with just about every written word I saw. From my perspective, the reason this piece spoke to me was not only did I spend my childhood in the era she reflects upon, but also this is how I strive to raise my own children. It makes me wonder after reading and reflecting upon momma’s words how the boy would fit into those yesterdays and our parents style of spare the rod and spoil the child. Do not get me wrong, I had a few issues with a line or two that was written but for the most part I read,(and I read again) and I forwarded to my friends, all the while thinking this how I want my site to be, I want to connect with someone.

Parents are so bombarded with messages from friends, family, media, etc that they need to be perfect at what they do. Be an active participant in every aspect of your child’s lives, have a say in all they do, wear adorable J Crew clothes and find a cause and stick to it. Quite frankly this is why I stopped attending support groups for the boy. Every time I went there seemed to be parents who were just as new as me to the Aspie Life yet they were experts. I felt like I was not doing enough immediately because we did not have an educational advocate, we had not had (at the time) a major battle with our local public school system and I had only read a handful of books. Month after month it was the same stories and the same people telling them and almost always about school. I wanted to hear about how people responded to tantrums and outbursts, how parents handled the obsessions and hygiene issues but no one talked about those things. The only problems anyone seemed to have involved school and I felt disconnected. Sure the boy had loads of problems at school, the biggest issue being they had no freaking clue how to deal with him, but I had problems after school, before school and on the weekends as well. We reached out everywhere we could, therapists, doctors, behavior specialists and some things worked and others did not. Once I finally found my team and got the boy into school with the Saint our quality of life dramatically improved. So as a form of therapy for myself I sat down one day and I realized that I have a lot to share about raising a boy with Asperger Syndrome. I may be right, I may be totally off my proverbial rocker but my experiences are echoed in message boards and Facebook pages,they were written to some extent by Shonda Schilling, wife of Curt Schilling, in a book published last year titled “The Best Kind of Different” and in the voices of parents I have met along the way since the boy’s diagnosis. So for now, this is part of my working through life as we know it with the boy and my way of saying to hang in there because you are not alone out there in this challenging Aspie world.

Along the way I bumped into a long time acquaintance who like me has an Aspie child. Once we got beyond the small talk of how is everything going, so good to see you, blah, blah, blah we managed a way to find out what is going on in our children’s lives. This could be a conversation on any street, in any suburb, and it was for the most part except here I was standing in complete envy of my neighbor. Her Aspie child actually had gone off to college and lived there for a whole year. Her child found someone to date and actually passed their classes, I felt in awe. The thought of the boy doing just the same was making me salivate but then the tone of the conversation changed and I was right back in the thick of aspie reality, their child was home from college, not really able to hold a job right now and this mom was tired and frustrated…welcome to my world.

Oddly enough it feels good knowing there is another person close enough to touch who feels my pain. Having another person express what ruminates in my brain is such a freeing experience, it is difficult to manage to put it into words. I have said it before and I will say it again I feel so guilty that I do not have the patience I see other parents have with their children. I allow my self to get angry and frustrated, I refuse to make excuses and pretend that everything is just fine because often times we are anything but fine. I truly believe that the boy has a valid reason to act the way he does but it is not an excuse for him to behave like a jerk. My friend said something that I often think… that dealing with our kids can be soul sucking and draining so we as their parents and care givers have to manage to find a way to carve a few minutes for ourselves or else we will be lost. Preaching to the choir my friend, but what struck me is this is something so true but somehow we as a society are so into everything is great, everything is perfect so we smile and talk about how we just love our kids and will do anything for them. Such a true statement for us as parents, but no one ever says well the boy was having a melt down today because I would not give him $5 for this or that and instead of dealing with him I went into my room and hid under my pillow while I watched reruns of “NCIS”..but I know everyone has because dealing with our Aspie kids is overwhelming. So what to do instead of hiding?

Well, I take my dogs for a walk and watch them sniff with wonder every inch of grassy surface as if they had never walked these roads before. We walk and they bark at everything that moves, kind of like having a couple of toddlers with me who are full of mischief, I run into neighbors old and new and keep the conversation light and limited to the dogs and the construction happening at my house. Walking gives me a few minutes to get away and not deal with what is waiting for me behind closed doors, a grumpy and anxious boy, annoyed siblings, a diva cat, a pile of laundry that could rival Mt Everest and a blog on this computer that I promised myself I would update frequently this year but failed in an epic way. In my defense (what I really mean is…here is my excuse) it has been a busy spring and summer filled with good and not so good things. Change is in the air for everyone in our family… but for right now we are working on sending the boy to college for real and he is fighting me every step of the way…at least some things never change

I have not read through my previous posts here and I am not sure I have shared much of the boy’s history , but I will tell you now that in addition to Aspergers Syndrome my boy has also been diagnosed with early onset bipolar disorder. I am learning that this co morbid combination is far more common than I have thought possible. So many people with AS struggle with conditions such as OCD and ADHD in addition to AS or maybe a number of these conditions together. Some days it is hard to say what condition affects the boy more, the AS or the bipolar, often times if the medications to help manage the boy’s bipolar are at a good level and he is actually taking them then we deal mostly with symptoms of AS. There are times of the year however when the symptoms of bipolar become more prominent and we have to address them immediately.The change in seasons is so difficult on the boy, especially when we move the clocks either forward or backwards. For many people with mood disorders those times are especially challenging, but if you add in a rigid aspie brain, used to following a strict schedule, things can get downright ugly.

I can not put my finger on an exact day or time when our latest backwards slide began to surface. I only know that suddenly I felt like we were standing in quicksand and the earth was disappearing faster than I could find solid ground. The boy was out of control, he was losing weight, staying awake for days, obsessing over games and talking a mile a minute. Then he began to retreat to his room and was spending an unhealthy amount of time on xbox screaming and yelling at people he was in a game room with. I got a call from the saint one day asking me to come to school because my boy had been busted using his cellphone and refused to give it to a teacher for the remainder of the day. To make matters worse, the staff at his school had also noticed the boy had developed what looked like a tic disorder. They were right, the boy was moving his mouth, pursing his lips, and when he tried to control that, his eyebrows were moving up and down. It was difficult to watch, but what struck the saint and myself as odd was the boy was not able to laugh at himself, to see what a goof he was being and admit yeah he messed up and move on. Instead we saw a young man who could not accept any responsibility for his own actions and he was rather angry and acting out. On that day I did what was best for everyone and took the boy out of school. In true Aspie form the boy moved on when his mood passed as if nothing happened, while I was still reeling from the events that unfolded rapidly in front of me. An outsider could have looked at us as a parent and child going out and about on a normal day, nothing could have been farther from the truth.

As the days became more and more unbearable I found myself in a dark place, dreading the moment in the morning when the alarm would go off and I had to wake the boy up for school. I had to give myself a pep talk to get out of bed, gear up for the swearing and screaming from the boy, the name calling and the accusations all before seven in the morning. The hours the boy spent at school got to be the only reprieve we had all day, and the weekends were ten times worse. My head began to ache, my stomach began to churn and I spent an awful lot of time talking to the Saint on the phone at all hours of the day, trying to get guidance for our next move. I can not express how grateful I am to the Saint for all of her support and guidance during those really tough days. One thing was obvious through all of this was the boy was manic and we needed to know why and if he was actually taking his medications.

The manic state the boy was in, was made worse by decisions we made with his medication management doctor to get the tics under control before they became permanent. Days were starting to feel like weeks, and then all hell broke loose and we were drowning. The decision to cut back on certain medications at the time was an effort to control the tics and to keep the boy home and in his familiar environment for as long as possible. His doctor kept in constant contact to monitor how things were going, but things were not going well at all. The boy was making threats and in the mental state he was in who knew if he could keep his impulses under control, The boy began to to do things I never expected, and the worst was coming home to my bedroom practically ransacked with my things everywhere. I felt violated and angry, I knew that talking to him would get me nowhere, the manic part of him had zero impulse control and the Asperger part of him had no concept of how wrong his actions were.

This is when I started sleeping with protection under my pillow because I no longer felt safe in my own home. My sleep was just as awful as the boy’s. The other children in the house were feeling this maybe worse than I was and I finally put aside my guilt and shame and asked for help. I knew that in asking for help that inevitably the boy would be put in the hospital ; yes indeed that was the heartbreaking decision we had to make. I was lucky, his psychiatrist was able to help the process along and find a bed for him at the same hospital she works at, hence avoiding an emergency room visit and the possibility of being sent anywhere there was an available bed.

There is a host of feelings that take over once that decision is made, because once it is determined that a person needs hospitalization as a parent or patient some of your control is taken away. I felt relieved that he was finally getting help, relieved he was going to be out of the house and not terrorizing us, sad because I felt like I failed him, angry that he terrorized us for weeks, and exhausted by everything that happened. He did not go willingly at first, we almost had to have an ambulance come but his doctor convinced him to sign himself in in order to retain some control of his situation.

Alone I was crying, but in front of the world I was stoic. The boy was angry with me because I could not bring myself to visit. My heart was heavy from heartbreak. I realized that my son will never be typical but I also know that I need to take back some control, not to feel guilty about all of this (that is easier said than done) and I realize that all the work we have done to keep the boy home and safe has hurt him as much as it has helped him. A hospital stay, although necessary is traumatizing to all involved because on one hand you understand rationally that the person is indeed sick and needs medical attention to get better and on the other hand the events leading up to the hospitalization are so extreme and so severe that it is hard to put aside the feelings of hurt and anger. For me this time, the boy came very close to confronting me physically (he did not) and I was scared even though I knew it was a result of his medications not being right.

The boy is home again, it has been hard this time. I am still angry over the events that led up to the boy being in the hospital, but that is my issue , not his. He is on new medications and they seem to be working , but his old behaviors break through often. The other night the boy paced all night in his room, unable to sleep. In turn I was up with him and I am tired …and I am hopeful

I am reminded of a line from my favorite movie “… hope is a good thing, maybe the best of things, and no good thing ever dies…” I am searching for hope to heal my heartbreak

1) A person with Asperger’s has difficulty picking up on social cues.  Let’s see, this winter other than maybe once has anyone said “Gee I would really love a great big snow storm to add to what we already have”..well I have heard one or two and those people I don’t know about. No Mother darling what people are saying is I would like Spring to arrive and soon.

2) A person with Asperger’s dislikes any change in routine. Shall I say more? It seems like every Tuesday or Wednesday our dear Mother sends us another boat load of snow (or truck loads if you live in the Merrimack Valley in Massachusetts)

3)A person with Asperger’s may appear to lack empathy.  This winter, Mother nature has failed to show any empathy to the East Coast, dumping storm after storm on us filled with snow not taking into account that people are losing hours at work, kids are going to be in school until August and cities and towns are running out of snow removal money.

4) A person with Asperger’s may be preoccupied with a limited subject matter…this winter has been snow, snow and more snow do I need to say anything else?

Well the evidence supports my argument, but who knows, Mother Nature might just be in a very bad mood this year..all I want to say is whatever it is I am sorry and I promise not to do it again if you will only turn off the snow making machine.

Let me rewind the tape here and fill you in on what went down…we happen to live in one of the 49 states currently with snow on the ground and we were snowbound with a restless Boy. Several conversations took place in this time period but never once were the words HAIR or CUT ever mentioned. Today my communication device chimed and on  the other end was The Saint. The Saint in the interest of justice was alerting me that Captain Happy informed her and others that I (in true Maven fashion) ignored the pleas of an anguished Boy who simply longed for nothing more than to heard… he wanted a haircut .  The Boy’s  pleas fell upon deaf ears and in true villain form I denied him. This was the saddest story I have ever heard…Now let me tell you if Captain Happy had remotely mentioned to me that he desired a haircut even at the height of the falling snow I would have put the SUV in snow assist ,braved the elements and found a hairdresser, any hairdresser, at any cost… to cut his hair.

Bewildered but the tale I heard I decided to jump into action and devised a plan…after picking the younger child(ren) up from school Captain Happy and the Maniacal Maven would have a bonding session and visit the hair salon (because The Boy refuses to see the Barber who has cut his hair since the Boy was 6 months old…yes the boy had enough hair to start getting cuts that young) There was a peace-offering in the interim..pizza and Pepsi with the hope that all would go well but … and by the way did I mention that the boy was starting to resemble Farrah Fawcett, feathers and all circa 1977 Charlie’s Angels

Things started off well. The hairdresser explained to the boy that he needs to stay ahead of his dead ends and that he needs to deep clean his scalp (that in my opinion deserves a congressional medal of honor…only the bravest go there) and so off the boy goes with Corinne and I am signaling to the poor dear to cut more and more…and by the way the boy’s hair was longer than mine is…and Captain happy informs Corinne that he wants his bangs cut. SAY WHAT? I say this with all the motherly affection I can muster at the moment..after getting his bangs cut straight across the boy resembles Shaggy meets Billy Ray from his Achey Breaky Heart days meets the Beetles in 1964..it ain’t pretty. I was ready to break out the Scooby Snacks and for a moment the thought of replacing his shampoo with hair remover crossed my brain …and NO I would never do that but I am entitled to 1 evil thought per hour…The boy is thrilled…he may have won this round but I am still ahead…

Until next time…