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!