Autism & Anxiety - "Tomorrow is Death.."

It is a well-known factor that anxiety often exists in correlation with autism. Perhaps all of us, to a degree, has experienced some form of anxiety during our lifetime for whatever reason. Maybe you are late for an important appointment or job interview, maybe you know you will not have enough money to pay your mortgage that month. That uncomfortable feeling comes over you. Your entire body tenses and you just can't shake this overbearing sensation of feeling stressed out and uptight. Your heart rate increases.You might even feel nauseous and start talking to yourself, as if you are trying to find a solution to this cause of your anxiety. Maybe you are even yelling to blow off some steam. Eventually, you say to yourself, "I'll be OK", or "It'll work out" as your brain is racing trying to figure out a solution. The tense feeling in your body starts to loosen up, you start to relax and your heartbeat returns to it's regular rhythm. You now feel relaxed and back to your normal self within a short matter of time.

Often times, children with autism and anxiety do not have this "automatic" self-soothing skill. It must be practiced and taught during calm periods and in small doses. In addition, the cause of the anxiety becomes almost an obsession of worry, and a vicious cycle starts. They change their habits to avoid the stressor, or cause of the anxiety. In fact, they avoid it at all costs. It is painful to feel this way, a sense of doom if the source of anxiety, or even the thought of it, is present.

No, I would not change my kid's with autism for the world!

Recently, I came across a blog that I could not stop thinking about. I didn't know exactly how I felt about it. It kind of bothered me. The blog headline was directed at parents who state they would not change their children with autism for the world. To this, the blogger said, "Bulls--t!!" Maybe it is because I myself have said, countless times, the very statement this blogger felt was a load of B.S, "I would not change my kiddo's for the world". I am sure you could even find this statement in one of my blogs, yet autism has made me cry, feel despair, frustration and hopelessness, empty and broken. Autism itself has hit me, pulled me, given me bruises, pushed me, made me bleed, pinched me, pulled my hair out and kicked me. In our household, it comes in a variety of flavors, from good to bad, and vice versa, every day. You don't know what the day will be like Sometimes it rapidly changes in a matter of minutes. It is unpredictable. So why does this statement bother me? Is it really B.S. that I say I wouldn't change my kiddo's for the world?

A Parade of Empathy

I remember when Nugget was 3 and we were going through all the required testing prior to receiving the autism diagnosis. "Lack of empathy" was always one I checked off, for obvious reasons. He simply did not show empathy or seem to appropriately respond, or tune in to others emotions. Even if he was the cause of such emotions. If another person cried, he seemed oblivious to this fact. He never changed what he was doing or how he was acting, in response.

It was unbearably cold outside during the St. Patrick's Day parade this past year. Nugget was covering his ears as he always does if their are sounds he doesn't like. The marching band that went by was really loud, but we knew he had been to louder parades before. This just happened to be one of those days. He was not in a good mood because they had forgotten to put ketchup on his cheeseburger at the food stand. My husband and I were doing everything we could to keep him engaged during the parade. This day he was not going to have any part of the parade and would rather run up and down the sidewalks. I joined him in running, trying to initiate a game of tag. I didn't mind since it also helped keep us a little warmer. "Tag, your it, Mom!". Finally, a smile and laughter. We had overcome the cheeseburger incident and went back to where hubby and Bear were standing. He seemed to be enjoying the parade this time and even threw some of his candy over to some little girls sitting across the street from us. They had not been quick enough to grab any of the candy flying around and Nugget had noticed this. I was surprised. What made him notice? He is usually so absorbed in his own thoughts and actions, I thought.

To My Son's First Teacher......you set the tone for his school experience!

Photo courtesy of Kevin Pack

Nugget will be entering 4th grade this year at a new school. We were forced to change his placement when, in April of this year, he had over 800 aggressive behaviors while at school, according to the school's own data. Nugget has not shown any forms of physical aggression at home in the last 2 years. When Nugget was 3, he was receiving intense ABA therapy at home. He raced through the goals and finished the program in just 2 years. His behaviors were quickly reduced at home when my husband and I both starting applying these techniques as well, and still do. His behaviors at school continued, as school staff were not applying consistent positive behavior supports. They said they were, of course, but we believed Nugget's behaviors in this environment proved otherwise. We knew our son. Just because he has autism, does not mean he can't talk. He had no reason to lie about being "squeezed" at school by school staff, including the Principal. We filed for due process after Nugget came home with matching bruises on both of his arms. No one could explain to us how they happened. We did not approve of him being restrained, yet it was occurring. The school settled. Unfortunately, the ignorance of school staff continued to the point of Nugget coming home in April saying he would rather die. Needless to say, we did not send him back. The challenges Nugget faced started already in Kindergarten, 4 years ago. Below is an email I sent to his teacher at the end of the school year. This teacher has yet to apologize, or even acknowledge us, or this email. Kindergarten, I believe, was an extremely important year as it would set the tone for Nugget's perception of school. Unfortunately, it was not good and as many of you know, you cannot get those years back. To other parents, I say go with your gut feeling when your child is telling, or trying to tell you something. If he/she is not verbal, their own behavior can speak volumes. I have changed his name in the below email.

"Let it Go" song lyrics done Momtisms-style, inspired by a real IEP meeting!

Since we are quickly approaching a new school year, the "sonflowers'" IEP's have been on my mind. It is almost time for the dreaded #IEP meeting. Bear will be entering 8th grade and seems to be progressing quite well, although I understand their will be more demands this year that I hope he can cope with. Nugget, on the other hand, is starting a new school after we fought for a change of placement due to his lack of progress and meeting his IEP goals at his previous school. Here are the lyrics from this event that I was inspired to create from the song "Let it go". Enjoy!

"It ain't over til' the fat lady sings!" at the Dr.'s Office

"It ain't over til' the fat lady sings"

Over the years, Nugget has developed some real anxieties that are a daily challenge for him. In addition, these anxieties can put a real damper on social interactions with others. I feel really bad for him since he can become totally stressed out by just a simple conversation between people if certain words, or phrases are used. We see a doctor every week to address these anxieties and so far I have been extremely pleased with the outcome.

 Today's visit proved to be more than just another visit to see the doctor. It was a first for me, both good and bad. At the beginning of each visit, I go in and talk to his doctor about progress, or lack thereof, and we plan accordingly about how to move forward. Nothing new today, we decided to proceed as planned. The doctor and I walked out together where it would be Nugget's turn to go with the doctor back to his office for a chat. As we walked out into the waiting room, Nugget was sitting at what he calls "his desk". This is the same routine, every time. He is sitting contently playing his Nintendo DSi. I decided to grab a magazine before finding a chair next to Nugget's "desk" and wait for him to finish his session. 

As I was flipping through the pages I heard, "Was that your son that was just sitting here?" with an agitated tone. I looked up to see a middle-aged, obese woman and she was not looking too happy. I immediately replied that it was, probably looking like a huge question mark. She snapped back saying, "Well, he called me fat!". I did not appreciate her tone with me, but I immediately apologized and said that my son has a little difficulty with his filter and will just say what's on his mind. I do not condone any inappropriate comments from my sons such as this, and if I had been sitting there when this happened, I would have used it as a teaching opportunity of appropriate/inappropriate comments. However, just the way she was acting towards me, I so wanted to say, "Well, some people call him autistic, but you don't see me making a scene". I kept my mouth shut. I did not want to utter the words autism and add to that stigma. Still, I did feel bad and had no right to judge her or her situation and I could completely understand why she would feel upset. I guess as a mother I just wanted to go into immediate defense-attack mode. Fortunately, she lightened up after I said I would discuss this with him. I guess that's what she wanted to hear since she just walked away.  I was sitting there trying to process what had just happened.

Got change?

Many parents feel completely overwhelmed and devastated when their child receives a diagnosis of autism. To be honest, I felt like a part of me and my child died that day in the doctors office when we received the dx on my youngest son first. You can read the complete story by clicking "Links to this post" at the bottom of this page. This was not how I envisioned the future. I went through what they call "the 7 stages of loss", and not necessarily in the following order. Heck, I think over time I have even "revisited" one or two of the stages a couple of times, including going through all of them at the doctors office that day (yeah, I must get around to apologizing to my son's pediatrician). In case you are wondering what they are:pain & guilt, anger & bargaining, depression, acceptance, change, and hope. Maybe you are in one of these stages right now. I think each parent goes through these stages, at their own pace. And why can't we? I don't know about you, but I did not carry my son for 9 months thinking that I was going to have to take my son to speech, occupational therapy, psychologists, advocate the heck out of school just to get my son's rights to an equal education met(story for another time), neuro-developmental pediatricians,tons of testing, only buy certain foods (because that IS all he will eat), only buy certain clothes (because that IS all he will wear), not sing happy birthday (because he covers his ears and absolutely hates it - maybe it's my singing. I'll investigate further on that one and get back to you). I could really go on, but I know you aren't reading this because you don't have anything to do, especially if you are an autism parent or caregiver. I hope if you are in the early stages of loss that this will help you realize that you are not alone. I have heard from other parents that they just can't do it. I say you just can't do it right now. Their is support that can help push you into the positive side of loss. Maybe you already have a form of support (spouse, family, friend, support group, etc.), but you just aren't ready. That's OK. All in due time, my friend. Never let anyone make you feel guilty about taking the time you need. Why? Because when you are ready to move on,you WILL be better prepared to help your child. When I got to this stage, I literally went into overdrive, obsessed (and still am) with learning about anything having to do with autism, supports, services, the law, therapies, etc. I was ready for change. Maybe you won't be as "obsessed" as I was. Either way, you and your child will benefit from your confidence in overcoming your "loss". It's easier to accept change when we have had time to process the unexpected. And let's face it, if we want change - something in us has to have time to change first.

"The Look": 1 reason why I wish my kids did NOT have autism

Yep, you heard me. Some days I wish autism was not a part of our household. Don't get me wrong, I believe their autism is something that adds personality and uniqueness to the individuals they are. I wouldn't have it any other way. If I had a magic wand, I would never think to remove their autism. I love them just how they are. No, I would wish for something simple. A vacation, a LONG bath, enjoy a whole cup of coffee before it gets cold, watch a Netflix marathon...nope, nothing big. What mom wouldn't?

Some days I envy parents of neuro-typical children though.  I wish I could just simply do the task of parenting, like my parents did. No IEP's, no reinforcers, no pre-planning everything, no schedules, etc. But their is one thing I am particularly envious of - "The Look!"

I wish I could just give that one facial expression to display my lack of approval - "The look"! Yeah, you know the one. The one your mom or dad gave you when you were growing up and you thought, "Holy #$%, I'm in trouble now!!" (and believe me, that happened a lot!). Taking an extra piece of cake? - BAM! "The Look!". Messy room? - BAM! "The Look!". Yep, I bet that was a much easier correctional tactic, no reinforcement required, and probably felt pretty good just to give that one glare, and I KNEW what it meant.

Now, let's see what that looks like in my household with my kiddos (evil laughter inserted here). Yeah, you go ahead "Nugget". Try and take that extra piece of cake, cause you know what's coming - "The look"! Can you feel that? Nope, nothing. He wasn't even looking at me to see if I approved or not (note to self: add IEP goal to work on perspective-taking). OK, let's try you, "Bear" (in addition to having autism, "Bear" also has ODD so some days he is a real "Grizzly"). "The Look" should really work on him, I am thinking. "You better pick up your room. It's a huge mess!" (extra emphasis added by utilizing "the look"). Silence, more silence... Then "Bear" finally adds (with sarcastic tone), "How can I pick up my room? Do you think I am Super Man (door slams). I sink to my knees. Wait a minute ...... he didn't just... oh yes, he did. My son just give ME the look?

 Defeated, I realize I may never know the joy of giving a glare and having someone wince by just that one facial expression. The one look that will immediately make anyone correct themselves due to my glare of disapproval. Oh, but wait, hubby is home, and why is he watching TV instead of working on that "honey-do" list? I rise up, hands on hips and confidently stride into the living room.......Victory is mine!!!

Did you just call my son the "A" word?

As I was sitting there watching the doctor give my 5-day old infant boy the "once-over", I couldn't help but to hold my breath and await to hear that everything was OK
"-Yep, he looks perfectly healthy. In fact, he is about the healthiest baby I've seen today. Most of the babies coming in today are jaundiced."
Ok, now I could breath. After all, that's what I had been waiting to hear all day. Although he wasn't sleeping a lot during the night, in fact waking on the dot every two hours round the clock, I figured it would get better as he got older. After all, he was supposed to be fed at these times anyway, and the nurse said he looked healthy. Contently, I drove home, unaware of what the future hold, but with a positive attitude. It will get better.
The months seemed to fly by and I seemed to feel more and more exhausted. My husband, doing the best he could to help out with the night time wakings, was starting to wear on him as well. We both knew that once he was awake, it was almost impossible to get him back into the crib without kicking and screaming. Having to get up early and go to work, we agreed that I would get up with the baby at night during the week, and he would let me sleep in on the weekends. I spent the nights on a couch in his room, afraid to almost get comfortable because he would wake up the minute I would start to relax. Things were not getting better. They were getting worse. He seemed so overly-sensitive to just about everything.
I was doing the dishes one day and he was in his playpen, when I noticed that he was just sitting there backed in a corner staring at something. I went over to see what it was. He seemed to be in some kind of a trance over some flashing lights on a ball. I called his name. He didn't even flinch. I kept calling desperately trying to get his attention, but he appeared to be totally unaware that I was even there. He picked up the ball and began mouthing it only now he was looking in my direction but seemed to be looking right through me. Horrified and not knowing what to think of this, I picked him up and just held him. Things will get better, I thought.

"Autistic" makes me cringe!

I know. Out of all the challenges parents and individuals on the spectrum face, how to refer to an individual diagnosed with autism should not be one of them. However, some people, including parents, often refer to individuals with ASD as being "autistic". This term, however implied, kind of gets under my skin. I can't help it. Why? I'll ask you one question. How do you refer to an individual that "has" something, like cancer? Do you refer to them by saying, "Oh, she's cancerous"? I doubt you do. You would usually refer to this individual as having cancer. The cancer does not define this individual, who they are, and vice versa. An individual with Down Syndrome, is not defined by being Down Syndome-ish, etc. So why does it make sense to refer to an individual with autism as being autistic? Autism does not define my sons. They are each unique individuals with their own interests, personalities, likes, dislikes, etc. They have symptoms of autism. The autism symptoms are merely a part of them and does not define who they are. Terms like "autistic" only add to the negative stigma surrounding autism that, in this day in age with the increase in diagnosis, should no longer be a part of society's impression of our children. Let's remember to apply the "person first" mentality when we refer to individuals that have autism.

Carry on, my friends, and raise a little awareness.