Thursday, April 28, 2016

Extreme Fear and Anxiety Over Storms, How We Helped Our Son Cope.

I learned something new about our son this week!  Okay, I've learned a ton about our kids throughout the years, but this one was big. The last few weeks have been pretty rough for him and therefore, on the rest of us. He is and has been TERRIFIED of storms since he was a tot. As y'all know, I love storms and I've found myself unable to even mention anything about them when our son is around. The mere mention of storms caused immeasurable anxiety attacks for him. Even at school. So, we kept any mention of storms at a bare minimum and telling him that the storms were no big deal, that he'd be okay. With the recent destructive hail storm everything got ten times worse for him. Not only was he NOT okay, but neither was his house and he told us so. Our roof and siding have holes in them, causing water damage to the ceiling, all windows on the north and west sides of our home were blown out, blinds were torn apart, carpets destroyed by water, hail debris and tiny shards of glass that don't come out, etc. The kids bedrooms are unlivable. Due to the large scale devastation to an entire city, the repair is slow moving and could be weeks or months before all is back to normal again. His routine was turned upside down and he doesn't have his small, but safe feeling room right now. Sleeping on a mattress on the floor in a much larger room, brings on anxiety in itself. Each afternoon, he was coming home in panic mode, asking if there were any storms forecasted and if so, what kind. Of course, as most parents would do, I'd sugar coat the forecasts as to not make the anxiety worse. On Tuesday, another severe storm was due to push through our area and knowing it was coming was causing upheaval in our home and at school. Prior to him coming home from school I started researching and getting on message boards to figure out what to do. I learned that with an autistic child you have to be straight forward, honest and don't hold back. No sugar coating. I was told to give him all the information and explain probability and not focus on the chances of tornados or hail hitting us, but on the chances they won't hit us. Yes, there is a chance, but the odds are, they won't. When our son came home, I hesitantly explained everything, allowed him to ask questions and I didn't tell him to not worry. I told him that lots of adults were scared too, not just him. He was upset and did curl up on his mattress in a ball whimpering for a bit, but then, the most incredible things started happening. He started thinking about it, putting the pieces together and understanding. He asked to watch "Wreck it Ralph" to take his mind off of the storms and he did pretty good. When it was over he asked to take a bath! Anyone who knows our son, knows that this has NEVER happened before. He hates bathing! He took a bath, came out and announced he felt much better. When the storm hit, he was nervous, but not like he had been. He now has access to the same weather apps I have and to the National Weather Service website and is learning to read weather maps. This morning he announced there will be more storms possible late tonight and tomorrow, but the probability of tornados and hail are extremely low. Just so you know, THIS IS AMAZING! If y'all knew how bad it's been for this guy over the last few weeks, you'd understand fully. It goes to prove that we can't always protect our kids from the truth. In fact, the opposite happens, we are not protecting them at all, but making it much more difficult to truly understand and causing more anxiety. We live in a world where scary things happen and even our kids have to learn how to cope with those things. Allowing those things to slowly be introduced at the appropriate age and allow for fears to be faced and overcome in the safety of their home, helps them to grow and be strong when they face this world on their own two feet. I'm not saying everything will be perfectly great with weather issues, but it's a HUGE step forward and he's learning to cope with a huge fear and overcome it! I had to share this major accomplishment with you! It goes to show you how difficult life can be for our son, but it also shows how incredibly hard he works at it and how strong he is!!  Btw, if he's around you while you are talking weather, be prepared for a lecture of when the storms will hit, what type of storm it'll be, what the probabilities of the predicted impacts are, etc., LOL!  LOVE THIS BOY!!!

Thursday, April 7, 2016

What is Autism Awareness?

During my third pregnancy I was put on bed rest and was quite ill.  My husband's father came to visit and was a wonderful help.  He painted the entire outside of our home and helped out with our then, 3 year old son.  At that time, I knew there was something different about our son, but most just brushed it off as, "he's just a strong-willed 3 year old boy, he'll grow out of it.".  I didn't see that at all.  One morning, I prepared some oatmeal for our son and sat him at the table with his grandfather and then went to lay down.  A few minutes later, his oatmeal had cooled too much for him to eat it after talking non stop to his granddaddy.  He asked to get it warmed up and his grandfather told him he wasn't going to heat it up since he'd spent too much time talking.  Our son has to have his food at the right temperature or he cannot eat it.  Temperature, texture and smell of foods can actually make him gag and he'll lose the entire meal.  After asking to warm it up again, his grandfather told him that if he wasn't going to eat it, then he was finished.  Our son then replied, "No, I'm not finished.  I need it warm."  Then his grandfather told him that he was finished and took the bowl away.  That's when the meltdown began.  It was a total miscommunication.  Our son sounded as though he was being rebellious and disrespectful, but it was neither.  In our son's world he was hearing his grandfather say he was finished, when in fact, literally he was not finished, there was still food in the bowl and he still wanted to eat it and was trying to explain that he needed it to be warmed to continue eating it.  His grandfather was saying, if you don't obey and just eat the oatmeal the way it is, I'm going to take the bowl away and you won't get it back.  Our son cannot "read between the lines" and pick out inferences, he is very literal.  What you say is what he hears.  If you tell him today, it's raining cats and dogs outside, he will immediately picture cats and dogs coming down from the heavens and will giggle out loud.  Our son remembered that interaction with his grandfather for a long time and never understood why he got punished for wanting his oatmeal warmed up.  Even after explaining what his granddaddy meant, he would say, "But that's not what he said.".

As you can see,  people on the autism spectrum think differently than we do.  Everyone of our son's meltdowns are due to sensory overload, change in routine or miscommunications.  Our son was diagnosed with autism four years ago.  Since then, I have learned so many things about our son and how he thinks and have a much clearer view of how he sees this world and now, I understand why he reacts the way he does.  Earlier this year, my son's teacher had the class fill in bubbles on a standardized test.  She quickly explained to the class on what they were to fill in.  When our son got to a particular box with a bunch of numbers, he asked the teacher if he was just supposed to fill in any of the numbers in that box.  The teacher's reply was, "I'm going to pretend I didn't hear that.".  Our son came home and asked me why his teacher would ignore him.  After getting a full explanation of what happened, he told me that when a person pretends not to listen to someone, that they are actually ignoring them.  He never did fill anything in that section because he honestly did not know what to put in there.  His teacher thought he was being disrespectful even though she is fully aware that he is on the spectrum.

The teacher's unawareness goes to show that there are so many people who are aware of autism and some of the behaviors or symptoms of autism, but their awareness is minimal in the overall picture of autism.  Autism affects how the person thinks, communicates, perceives this world, how their senses are affected by everyday life, such as touch, taste, smells, sights and sounds, how schedules and routine are musts haves in their world to feel some sense of order in this highly chaotic world.  Our son has an above average IQ, but will not get a long term project done without a specific schedule.  If he's given a large project with a broad topic that is due in two months, like a Science Fair project, he is confused at what is to be done first and to just do the whole project at once is impossible, so it doesn't get done at all.  If he receives a schedule of what is specifically expected of him and when each part is due, no problem!  He'll pass with flying colors. Without the schedules and routine they often feel lost, overwhelmed and confused.  This is why it very important for mainstream teachers to receive more education on Autism Spectrum Disorders, after all, they will have at least one student in their class each year on the spectrum.  My husband is a fifth grade teacher and has at least two children on the spectrum in his class this year.  He was amazed at hearing these children have a hard time in some of the other teacher's classrooms, but he rarely has those problems in his class.  I truly believe it's because he is aware and knows exactly what to do for those children and because of that, they do well and those children love him.  Some children are more noticeably on the spectrum than others.  For example, one may have a hard time sitting in his seat or he may keep repeating words you say or rock in his chair and the other may sit in his chair, but is bouncing his legs to cope with sitting still, is quiet and looks attentive.  Our son has learned coping skills to help him with some of the more outward appearances of autism, so it's not as noticeable until someone or something throws him off, such as throwing a paper airplane at him.  Most kids would laugh and brush it off.  The first initial reaction of our son would be, "Who threw this at me?!?" then "You are not supposed to throw paper airplanes in class!" and then erupt into tears that an injustice has been done because the teacher is angry with him, not the student who threw it. The teacher does not see why he's reacting, they are just seeing the reaction and have to get control of the class and immediately scolds at the yelling child.  I'm not saying the teacher is wrong, but I am saying that if the teacher understands the reaction, he/she may say to the yelling child, "I see that that made you angry, let me talk to him while you take this note to the librarian.".  Of course, there isn't really a note, but distracting the child and knowing the teacher recognized his frustration and knowing that he/she would talk to the offender will help him to calm down and get back to the task on hand much quicker.  After the child threw the paper airplane at our son yesterday, our son did not react in his usual manner, but instead threw the paper back at the child.  The teacher gave both children a detention for flying paper airplanes during class time.  Our son told me he was mad and threw it back at him, he did not fly it back at him.  I signed the detention form and told our son that I knew he wasn't flying it, but he can't throw anything at people, even paper. Then I told him, next time just wad it up and throw it in the trash.  Wadding it up will ruin his fun and you won't get into trouble.  In my mind, he did great!  He didn't have a meltdown because of that (although he did for getting the detention) and he's learning that certain responses are not acceptable, but he needs to be told what responses are acceptable, since in seventh grade tattle tailing is unacceptable.  So, telling him to wad the paper airplane up and throwing it in the trash was an acceptable coping mechanism.

I believe that if people understand autism, not just know the definitions of autism, but actually know what autism is and how it affects each child or adult, then and only then will people actually be aware of autism.  It's not about a label, it's about getting these children and adults help so they can cope in this world.  So many people still think autism is childhood schizophrenia or they have just one specific example or idea of what autism is.  Childhood schizophrenia is very rare, autism is not.  Autism also is different for each person...some rock, some don't, some speak eloquently, some don't, some have extremely high IQs, some are average and some are low, none are the exact same.  I don't know how many times I've heard people ask, "Why do you think the rate of autism has gone up in the last twenty years and keeps going up?".  My response is that the rate of autism has not gone up, it's been there all along, it's been called other things, but it's been there.  What has gone up is the rate of DIAGNOSIS, meaning that there are doctors and teachers that have become more aware of what autism is and the public is becoming more aware itself.  Now, if we could all just get past the stereotypes and actually try to peer into the thoughts and lives of these that are on the spectrum, maybe we could see what they are seeing and have a better understanding and become truly aware of what they deal with on a day to day basis, and let me tell you, if you think it's hard living your life, imagine how difficult these kids and adults have it. Being a parent is the hardest job you'll ever have and being a parent of a child with any disability is even harder.  A parent of a child with a disability is working hard, maybe the hardest of any working person in this world, but the rewards are great!  In the end, I'm pretty sure that these kids work harder than us. They are Super Heroes in my book!!!

Friday, April 1, 2016

Autism Is Like A Snowflake, There Are No Two That Are Alike

We have three children.  One is a "typical" eight year old girl, who is delightfully funny, is quite sharp and loves to dance and sing.  Two of our children are on the autism spectrum.  Autism is NOT a mental disorder, it is a neurological disorder.  Only one of our two children is diagnosed as having autism.  One is a 13 year old boy, who is quite intelligent, is very loving, he loves Legos, video games and Star Wars (He can tell you tons of facts about Star Wars.). The other is a 10 year old girl who is kind and creative, loves to draw, paint or do any sort of craft and absolutely LOVES animals (She will tell you all sorts of facts about them.). Do you know which one is diagnosed?  Females on the spectrum often go undiagnosed until later in life because they are like chameleons.  Our daughter has continually asked and wondered out loud, since she was 7 years old, if she had autism like her brother.  She was not the only one wondering, but because she was not diagnosed, I did not indulge and let her think I was wondering the same thing.  There were many similarities, like food aversions, sound sensitivities, high anxiety, odor sensitivities, extremely textile, clothes can only be loose fitting and very soft, sleep issues, digestive disorder, extremely sensitive, easily frustrated or angered, hyper awareness of those around her, not able to maintain eye contact, not understanding idioms and sarcasm, etc.  Some have told me that she's just imitating her brother.  However, he doesn't struggle with the same exact issues.  They are different as each person is different.  One of the main differences were that our daughter struggles academically with Math and some with reading, while our son is academically gifted.  She also seems to "fit in", but comes across as a shy tomboy, whereas our son comes across as quirky and socially awkward.  Our son also does not struggle with sleep disorders or digestive issues.  There are others that are similar, like food sensitivities, but they are different.  Our son has texture issues and gags easily on certain foods, whereas our daughter struggles with texture and smells of foods, but does not gag, so their aversions are quite different.  One loves tomatoes and the other doesn't.  If the food aversion was a learned trait, then they both wouldn't like them.  Our son has little to no clothing issues, whereas our daughter is extremely picky on what clothes she will or will not wear.  The list goes on.  They are quite different, but yet have similarities in most areas.  They just look different. Autism is like a snowflake, there are no two alike.  Some are very different and some look very similar upon first glance, but look closer and you'll start to see the differences.

Just recently our daughter came to me and told me that she feels like she lives her life trying to hide her real self at school or church because she's afraid of what people might think of her if she is her real self.  Past experiences of strange, bewildering looks or comments by other children have taught her to not repeat certain actions.  She told me she wishes that sometimes she could rewind days to undo something she said or did because she notices the strange looks or remarks she gets from other kids.  In fact, she even asked if she could go to a new school district next year so she could just start over.  "What about your friends?", I'd asked.  She replied, "I'll make new ones.".  This is not a typical 10 year old girl response!  Leave her friends behind?  Apparently, she's not connected enough to really be bothered by that.  Because our daughter never has meltdowns in the classroom, she has a friend at school that is "super crazy and fun" and boys like to play with them, the school does not believe she is on the spectrum, after all, autism does affect their social abilities.  The problem is that it does affect her, she's just really good at hiding it, hence the chameleon.  She is so hyper aware of people around her that she has learned how to act like them to "fit in".  She tells us all the time that she feels as though people are always looking at her strangely, like she's weird or something.  Well, she can't tell why they are looking at her.  Is it because they just happened to look her direction?  Is that person looking past her at something on the wall?  Did they look at her because she happened to look at her?  Did she do something strange that elicited the look?  Are they smiling at her because she said something that made them feel good about themselves or are they laughing at her?  It's quite obvious to me that she cannot read social cues.  There are many times she will tell her sibling or even us to stop looking at her.  I now realize it's because it's overwhelming to her.  Especially when she is frustrated because not only is she not able to figure out her own emotions, but she can't tell what ours is either and to her it is sensory overload.  It's been there all along!  She does struggle with social cues!  She does not understand idioms and sarcasm.  Even such language as, "It is ten until five." rather than "It is four fifty.".  She asks, "What does that mean?  It makes no sense!".  When I look at it from her perspective, it doesn't make sense.  Ten what until five what?  No one has ever explained to her that it is short for, "There is ten minutes before the clock will show that it is five o'clock." And it still does not give her the exact time and since she struggles with math, subtracting ten minutes from five o'clock is difficult for her.

So, after we talked extensively a couple of weeks ago, about how she still feels like everyone looks at her strangely and that she can't tell if her teacher is mad at her or just talking loudly, or that she just feels like she's no where, that she doesn't fit in, I finally told her that I believed she may be on the spectrum like her brother.  The response I got was completely unexpected!  A look of relief and understanding passed over her and she joyfully replied, "I'm like my brother.  I'm not weird, I'm just a girl who has autism.  I'm so thankful I have a brother who has autism!  Now he's not alone and neither am I."  She feels understood now.  She now understands why she gets so upset over things that don't make sense to us.  It's because she perceives things differently than we do, she knows this because we've talked to all three of our children about autism and what it is and how it can affect people.  It also helps me to remember to go deeper or think outside of the box to see what she is thinking or why she may be reacting negatively.  Also, it helps our youngest to understand BOTH of her siblings.

So, how do we get her help?  Because she is so good at disguising her inability to read social cues, by imitating others around her or just step back from the situation in confusion, which appears as if she is just being shy, she is not being recognized as being on the spectrum.  We've basically been left to work with her on our own.  It's very difficult at times because we do not always know how to help her and others don't see what we see.  People didn't see it with our son either.  Since he soared academically, he was just labeled as immature until he hit the third grade.  I've learned a lot by reading, researching, listening to adults on the spectrum and watching how our son has learned things.  The only thing I know to do, is to keep communicating with her teachers, pray for lots of wisdom and understanding and keep on going.  Even with awareness, there is still a lot of unawareness.  Teachers know little about autism and most only know the stereotypes. One thing I've learned, if you've met one person with autism, you've met only one person with autism!  If you are a teacher, friend or a family member of a person with autism, please, please, please do not judge parents of children with autism or adults with autism.  Do your research, ask them questions, keep an open mind and know that the parents know their own children better than you and those adults obviously know themselves and all they want, more than just a "label", is help so that they can cope with a world that does not meet their needs or understand how they think. If they cannot learn to cope in this world, they will never come to have an understanding of it or know how to live in it. So, when you see that six year old screaming in a grocery store because they are overwhelmed by sights, smells, noises, crowds, etc, or the child who keeps getting up out of his chair at a restaurant or being loud, don't judge. Your judgement only adds to the weight that is already being carried.  Please be supportive in every way you can.  A kind word or gesture goes a long way and can make a huge difference.