Sunday, July 26, 2015

Sixth Sense

Sensory overload is not just the clock ticking on the wall or the humming of the lights in Walmart. It is not just the ear-piercing shrill of a baby's cry or the sound of a crowd of children.

Sensory overload is not just the pungent odor of a skunk or a woman's perfume that literally burns your nose. It is not just the smell of a person across a crowd who may have forgotten to apply deodorant that day or the unidentified odor that drives you crazy until you are able to figure out what is causing it.

Sensory overload goes way beyond the basic senses. Feelings that I have tried to explain for so long but could never find the words. Sensations which are triggered not just by sights, sounds and smells but by people and objects too.

Children and adults on the spectrum can read into people with the strongest of senses. If there is something "off" about a person, it is noticed immediately. I'm not referring to just a vibe. It is more like a 6th sense.

The same goes for people whom we may feel a strong emotional connection to. Whether it be a person of the opposite sex (not just romantic), a mentor, a friend, a teacher, a therapist, or a coworker, certain people have a way of touching us in ways that can't be explained.

You see, sensory overload is not always a negative experience. These special relationships (which are few and far between) have the ability to cause profound sensory overload. An aura that is difficult to explain. Sensations that are overwhelming and heartwarming at the same time.

Throughout our lives, we come across people who we are able to identify with based on experiences. People who genuinely care about us and our well being. An attachment (for lack of a better word) is formed with certain people who have the ability to trigger an extreme physical response. It reminds me of the butterflies and excitement one feels when you start dating someone. Only, it is much more than that.

Neurotypical people may find these sensations difficult to understand. I have a hard time explaining it myself. A simple message, phone call, hug, etc. from the person with whom we feel this way produces a response that makes time stand still. An overpowering tingling sensation or "warmth" coupled with heart palpitations. A truly unexplainable experience. The moment may be brief or long lasting but it is very intense.

This type of sensory overload is extremely powerful, yet enjoyable. Caught in a daze or a "fog" so to speak, everything pauses around you for that moment.

I'd like to think of this sense as a gift. An ability to connect with someone on such a level that is unheard of.

Perhaps people don't speak of this sense for fear of jeopardizing relationships. Perhaps people fear that neurotypicals will be turned away from them.

Personally, I feel as though this sense is a blessing. An ability that should be spoken of, explored, and researched.

My hope is that others on the spectrum are able to identify with these feelings and breathe a sigh of relief.

Monday, July 13, 2015

Brain Torture

People may not know that I suffer from extreme anxiety. I worry about things that others may never think of. "What if?" plays through my mind a thousand times per day.

The simplest text message or email to/from others takes me a lot of time and effort to process. I might spend an entire hour trying to find the perfect words to put into one thank-you note.

If my brain had an "off" switch, it would be used often. My thoughts never slow down. The worrying never ends. I refer to most conflicts as "brain torture". A constant, internal battle that never seems to stop. Most days my thoughts suffocate me.

I tell myself often to breathe. Breathe deeply and more than once. I tell myself not to worry. That worrying takes the strength out of the day. There is only one problem. That "off" switch doesn't exist.

I like to think about the good in everything. While my thoughts can be torture, I have the ability to analyze situations to the fullest extent. I would make a wonderful investigator! ;-) God gave me the gift of observation. The trouble is finding the balance.

The balance between "brain torture" and accurate observations.

Saturday, May 9, 2015

Home Sick

I came across a quote recently about being home sick for a place that may not exist. Maybe it doesn't, but one thing's for sure...this emptiness in my heart is very real.

Single Mommy life is busy, yes. However, I'm not just talking about the busy Mom who doesn't get a break. I'm talking about the kind of Mom who wouldn't know what to do if she had a break. The kind of Mom who isn't really sure about herself or how to be social.

This emptiness I speak it really loneliness? The answer is hard to find. I have spent years dedicating myself to friends and loved ones. The truth is, I haven't been able to face who I really am. I'm not even sure myself. Am I really lonely or just afraid?

A lot of my time is spent going through the motions. Work, therapy, caring for my kids, etc. At the end of the day, when my kids are in bed, I sit and cry. I can't even put into words why I cry. I just do.

Make no mistake, I love my kids more than anything. Being a mother is what I live for. The smiles on their faces brings me pure joy. The mother-part of my heart couldn't be more full. So why the tears?

The social piece of my life is missing. It has been for some time. There is an overwhelming feeling like I'm not understood. I don't seek people out because I always feel like I'm bothering someone. In all the years of therapy, self-confidence is lacking. I do for others because it is the only thing that makes me feel good about myself.

I have spent more years of my life single than in a relationship, so this feeling isn't for lack of a mate. I don't know what it is like to go home to someone every day. I don't know what it is like to share the details of my day. I have never shared a holiday or birthday with a significant other. I have never even lived with man. I spend more time with myself than anyone else. Perhaps, herein lies the problem. Perhaps I'm uncomfortable in my own skin.

I spent 31 years of my life pretending to be something I'm not. Pretending to fit in has been my greatest struggle. Until 20 years of age, I couldn't even look anyone in the eye while holding a conversation. Just the thought of getting dressed and going somewhere brings on such overwhelming anxiety. Unless of course my sweat pants and hat are acceptable attire. No matter how crowded the room, amazingly I feel so alone. Taking everything in is exhausting.

The effort that goes into taking a break, getting dressed up, being around people, etc. is so much harder than being alone. I want to be social. The truth is, I'm not sure how. I live alone. I work alone. I'm single. There is a pattern here.

At 31, I have been diagnosed with ASD (high-functioning/undiagnosed Aspergers). This realization has given me some hope. An answer that explains my life's patterns. I never thought that I could feel so relieved and yet so torn at the same time. What has been buried since childhood is unfolding before me and I'm not sure how to handle it.

I'm home sick. I'm home sick for a place to fill this hole in my heart. Finding myself may be a step in the right direction.  

Saturday, April 25, 2015

Making a Difference

This world that we live in can be cruel. Day after day, judgments are placed at first glance. Assumptions are made based on a single event. Heads are turned and eyes are rolled. As an autism Mom, I make it my mission to ignore the ignorance (as difficult as it may be) and focus on the beauty that surrounds me. There are people in this world who actually make a difference. People who do so without even trying.

As an autism parent, the most significant struggle that I face is not caring for my son, but advocating for him. Trying to help people understand our world is no easy feat. There are some people who will never understand simply because there is no effort on their part. Others, make my job as advocate effortless. My son's first grade teacher has proven to me that patience, understanding and acceptance are possible for those who make the effort.

As we approach the end of the school year, I am reflecting upon the journey that we have shared. While I am saddened that my boy will be moving on to a new class next year, I have to remind myself that this year has truly been a year of growth. The progress that he has made this year would not have been possible without the love and support of his phenomenal teacher.

Over the course of the year, my son's teacher has not only helped my son but she has truly had an impact on us as a family. She has put up with an endless amount of phone calls, text messages, emails, etc. As an autism Mom, I often question the reasoning behind my correspondence with people. She has never made me feel like the seemingly silly details of his life are unimportant. Anything worth a meltdown is worth communicating. With that said, our home life has always carried over to school. Not only did his teacher accept this with open arms, she incorporated his home life into her classroom.

My son's teacher began incorporating his behavior incentive program (LEGO based) into her classroom (a regular education classroom) very early in the year. When Caiden was rewarded at home, his progress was shared in the classroom. The response was so exciting for both my son and his peers that she started a brand new (LEGO based) program at school inspired by my son and his special interest. The response to this initiative was overwhelming.  She was awarded a grant from a local autism fund to help with the cost of the new program and was recognized in our local newspaper. A selfless act which was well worth the recognition.

Local news doesn't even begin to pay tribute to a woman whom has brought such joy to my heart. The influence she has had on my son is tremendous. The understanding which she has demonstrated has impacted our lives in a way that will never be forgotten.

You see, there are some beautiful people in this world. If we all took the time to just stop and listen, we could all make a difference!

Sunday, January 25, 2015

The Little Things You Don't See

Autism misconception: He looks "normal" therefore he should act "normal". What you see is a "bad" child rolling on the floor at Walmart. What I see is much much more. The aspects of autism that can't be seen are the details that matter the most.

My son is high - functioning but please don't be fooled. High - functioning does not mean easy by any means. Our day is full of tiny significant details from beginning to end. The "little" things that keep him grounded are undeniably the BIGGEST part of our day.

Children with autism rely on structure and routine in their daily lives. The consistency allows them to have something to depend on in this crazy, unpredictable world. If we can provide them with a certain level of expectations then why shouldn't we?

What you might NOT see is that the "soft" clothes (as he refers to them) that he is wearing were carefully chosen for comfort. His shirt has no tags because they physically hurt his skin. His hair is a muss because he can't stand to have water on his head. His socks must have no awkward, misaligned seams. His shoes are Velcro because the motor planning of tying a shoe has proven to be frustrating and time consuming. His nails are unusually short and choppy because he chews them when nobody is looking. His gloves are clipped to his coat because planning and organizing is a daily struggle. With that said, there is much more to my son than his appearance.

What is happening inside that brain of his? Why is it that he is capable of rattling off the parts of the entire digestive system yet he can't remember to drink his juice box at lunch? He can put together thousand piece Lego sets without help but can't remember to wipe and wash his hands without being reminded. He can recite entire episodes of his favorite television shows but needs step-by-step how-to instructions for personal hygiene. The genius combined with lack of personal care skills baffles me.

Did you know that he performs his morning routine in the same order every day? Most people probably do. However, any slight difference in these activities is grounds for a potential meltdown. Don't ask him to take his meds and brush his teeth BEFORE he has gotten dressed or you will be told that is NOT how we operate. It makes mornings particularly difficult on days when Momma may have forgotten to lay his clothes out. The activities of the day must be performed the exact same way each time. Forget about parking the car in a different spot or taking an alternate route to the grocery store. It will be brought to your attention.

When Nonnie comes to visit she will be told, "That is NOT how Momma makes my toast!" Pop Pop will be told that we get three different vitamins in the morning, not two. He can remind those around him how to take care of him, yet he has to be given permission to remove his sweatshirt on "college sweatshirt day" at school even when there is sweat dripping down his face. He spent the first few weeks of Kindergarten roasting in his sweatshirt in a building without air conditioning because he didn't know whether or not he was "allowed" to take it off. It wasn't until Momma stopped by the school and noticed this that he finally found out that he didn't need permission to do so.

Food aversions is a topic all of its own. Don't mix his food or allow anything touching on his plate. Otherwise, it will all remain untouched. Milk makes him gag as well as the smell of eggs cooking. If I want to eat tuna, I must save it for a time when he isn't home. Forget about cooking anything that contains ground beef or any form of a potato. (Except French fries of course!) It is important to remember that we aren't talking about simple preferences here. Food aversions can be quite serious and a recipe for disaster if not taken into consideration.

Shopping trips require careful planning and preparation. Unless the boy is at school, the grocery store of choice is usually Weis Markets. While it is not my favorite, Giant is way too bright and Wegmans it too busy and crowded with people. We do what we can. Trust me, it took years of meltdowns for me to figure this much out. Now that he has outgrown the shopping cart I have to plan carefully in an attempt to get him through the store without a meltdown. I started making lists when he began reading. He carries the list and checks of the items as we go through the store. Even that was an ordeal at first. He didn't understand why we couldn't get the items as they appeared on the list. It took a while for him to understand that we navigate through the store aisle by aisle. When I pick up items that aren't included on the list, we have to stop so he can write it down and cross it off. It takes much longer to get through the store but it is a small price to pay in order to avoid meltdown mode.

I have merely touched on the details of everyday life in the world of autism. These details don't even begin to explain the struggle that comes along with major transitions. Just when you think you've got those "little" things under control, a change in routine comes along and slaps you in the face.

With each new school year a lengthy compilation of the most recent challenges is prepared and sent to the teacher. It takes a tremendous amount of effort to keep everyone involved in his life on the same page. Anything I can do to help people understand his little quirks to make his day that much easier. With any major transition it is crucial to prepare both he and those around him for potential issues. (I.e. the return of stress incontinence)

There is also the topic of sensory integration. Remember the grocery stores I mentioned? No matter where we go it is important for me to consider the environment he will be exposed to. Are there going to be a lot of people, bright lights, loud noises? What will the temperature be like? Is it sunny? Did I remember his sunglasses? Is there shade? Is there a quiet area of retreat if he should get overstimulated? Did I bring extra clothes? Is there an accessible bathroom? Did he eat recently? Did I bring a snack and a drink? Is it close to bedtime? If we will eat is there something he will like? All of the above are grounds for a meltdown if not taken into consideration. That is not to say that high stress situations are always avoidable. In certain situations time spent is limited and detailed preparation is a must.

Preparation is not only required with regards to sensory issues but also with regards to expectations. Who will be there, what will we do, how long will we stay, etc. If I don't let him know ahead of time what to expect he gets very anxious. We are going to the bank, the library, and the that order. You better believe I need to stick to that order. I realize we can't always predict what will happen, like a sudden knock on the door. But it does help alleviate some of his concerns.

So you see, there is much more to my high-functioning autistic child than what is seen on the outside by those around him. The miniscule details of our day of which I have only scraped the surface are paramount.

You see a "bad" child who looks "normal". I see a boy who is anxious. Not only are the lights too bright and the noises too great to bare, but those tiny details of his day have finally caught up to him. He needs his moment to just "be". What you see is not always what you get.

Sunday, January 18, 2015

Someone Gets It

Since the day my son was diagnosed with Aspergers Syndrome, assuming the role of advocate has been nothing short of exhausting. While the professionals (most of them) "get it", attempting to help others understand can be stressful and frustrating. Recently, after 3+ years, I have found someone involved in my son's life who not only understands but is willing to educate herself in areas of autism about which she is not familiar. A teacher. A fabulous, caring, compassionate, remarkable woman who is my son's 1st grade teacher.

Too often people who live outside the world of autism struggle to understand what is like to live in our world. Living with a child on the spectrum is exactly that...a different world. Most of the time people who have not lived the reality of our situation really don't "get it". The issue is simple (and complex at the same time)....a lack of awareness and education!

So many people are quick to make assumptions and judge ASD families especially out in public. Without awareness about autism, of course it seems as though the child rolling on the floor through the aisles at the grocery store is just a "bad" kid. Others may not be aware of the painful stimuli (ie. bright lights, noises, etc.) that have become too overwhelming for our child in that moment. As an ASD Mom I have learned to brush off this harsh reality and continue to raise awareness to those who are willing to listen.

While people in public can sometimes get under my skin, it is those who are involved in my son's daily life who truly matter to me. Playing advocate is my #1 role aside from loving my boy unconditionally. I have and always will do whatever it takes to help people understand. I don't expect everyone to understand. I am simply doing whatever I can to make my son's life a little bit easier.

Collaborating with professionals can be VERY tedious. Always trying to keep everyone on the same page (in a world that is constantly changing) is draining. There are so many little things to make people aware of. I have found that a lot of my free time is spent making phone calls, sending emails, preparing documents, etc. to be sure that I haven't missed anything. When a person spends so much time working with people, it is only natural to want this time to at least be somewhat enjoyable, right?

My son's 1st grade teacher has done just that! She has made this "free" time enjoyable for me. You see, professionals are SUPPPOSED to communicate and work with the parents to help the child. Teachers (general education teachers) while professionals of their own are certainly not autism experts no more than you or I. They don't HAVE to look outside the realm of general education. There are plenty of teacher's who are rigid and aren't willing to think outside the box. When a person (teacher, family member, neighbor, etc.) goes that extra mile to understand my son, it makes my job as advocate that much easier. That in itself is enjoyable!

What is more, my son LOVES his teacher! When a child comes home from school and talks about his/her teacher nonstop, it is safe to say that the teacher is making a difference. To me, making a difference is what life is all about! Not everyone is capable of truly touching the life of another.

My son's teacher has shown me that there are people in this world who are willing to listen. People outside the world of autism CAN take a step back and just simply watch. Judgememts, unwanted advice, etc. are NOT all there is to people who are uneducated about the outside world. For that I am forever grateful!

With that said, I would like to thank my son's teacher. To let her know that I appreciate her making my job as advocate effortless. For reaching out, for educating herself, for her willingness to LISTEN, and for going that extra mile. Most importantly, I want to thank her for touching my heart and the heart of my boy!

Thank you for "getting" it!

What a blessing this journey has been!