An Autism Parent Poem

Being an autism parent is exhausting.

I’m exhausted.

Wondering if I could have done more

Or if I should’ve done less.

Why?

Why is it so hard?

I hate to admit this.

I hate to admit that I need a break.

A break from…

Being a parent,

Being an autism parent,

Being an adult that has an abundance of worries.

Just for a day or two

Or five.

Jamaica.

But tomorrow’s a new day.

A time to try again.

After a good night of sleep.

With the help of a glass or more of

Wine.

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Today

01/23/19

#1. I’ve changed my child 3 times due to pooping incidents. He’s not yet toilet trained and also unable to keep his hands out of his pants when he goes number 2. Today there is an ever present back ground scent of shit. Thank gosh for Clorox sprays and candles.

#2. My child doesn’t want me around him at all. I’m lucky to get a kiss before a firm verbal ‘bye’ is given. There’s no reading together or playing, but because of #1 I have to be just within eye sight cause even if I leave him for a second too long there’s the high probability I’ll have a fourth incident. I told him to stop pooping today, he reminds me of when Chris Traeger on Parks & Recreation looks in the mirror to tell himself the same thing when he has the flu.

#3. Physical aggression is so tiring which is probably why I’m not too broken up about #2 today. If I do end up out staying my welcome and then asking for something that receives a “no” answer, it is the most terrible, awful, horrible, disgusting word to be uttered. If I’m not quick enough to have a distraction ready (which today I’m not because of not being allowed around him and his things), then the aggression pours from him like a water main break; strong, forceful and everywhere on my person. It includes bites, scratches and slaps, usually to the face.

The unfunny thing is that once Lance gets home, J will completely do a 180 from his experience vs. my experience. There will be giggles and laughter, reading and playing. The kid just loves his dad, I do too. Maybe our next snow day will be better.

NEEDED: Space

Previous winter breaks for our little family have been pretty stressful. The change in routine upsets the natural order of our schedules and since it is different, it is to be challenged by J. It’s basically an extended weekend by 14 days but with way more places to go, people to see and things to do. It has more sensory input than any other time of the year. So more behavioral issues, sleep pattern changes and mood fluctuations are to be expected and not to be held against someone with autism, our J.

But this winter break, our J has really shown us how much he has grown in the past year, figuratively but also literally. It may have been more noticeable this year because unlike previous years our winter break was less stressful and more home bound than ever before. J showed us that he has truly become comfortable in his own skin. His personality has been more prevalent than ever before. He’s truly grown into his 8 year old self.

How? He’s been wanting his own space, no more needed or wanted attention from Mom & Dad, unless at his request. He prefers to sit on the couch by himself or at the kitchen table with no company, even escaping to his bedroom when he wants self isolation. All in order to read his books in peace. From one book nerd to another I completely understand.

But for an 8 year old it sounds lonely, doesn’t it?

It definitely took us by surprise when it first started happening. At the beginning of winter break there were days that were a little to quiet as he requested his own space. As the break proceeded there were days that I was going to his bedroom every 15-20 minutes to check on him. Days that Lance was doing every goofy thing he could think of to bring him out of his room. Days that we’d turn music on or keep the TV on with Parks & Recreation to entice him to stay downstairs with us. And it might be just another phase but if not, that’s okay. Like I said before he is growing up and he’s not likely to stop doing that anytime soon, both figuratively and literally.

Luckily we’ll all be getting back to our routine in a day. We’re excited for Jax to have all his daily interactions again with his peers and school support team. We’re looking forward to hopefully having our regular interactions in the afternoon without him escaping to his bedroom. It might start off rough and take some time but again this is a change to the routine he has had for the last 2 weeks.

Change is big for those with autism and needs to be supported & understood, not discouraged or discredited. It’s not a negative reflection on you as a parent when unforeseen personality changes take place with your child. It is a reflection on you as a parent with how you deal & handle it.

Santa?

It’s not that I don’t believe in Santa, I do with my whole heart. I love Santa and what he represents; the spirit of the Christmas season, the joy that comes to the faces of both little kids & big kids, and all the excitement that is to be had for the jolly old man. Yet for our little family, we are on quite a different path of celebrating Santa than most.

J has never been excited for Santa or for him to come Christmas Eve. I’m not even sure he truly understands the concept of the Christmas season, let alone Santa. To him it’s just another day of getting up, getting ready, eating his pop tart & drinking his chocolate milk while watching PBS kids.

J has never wanted to sit on Santa’s lap. He’s never wanted to visit him or to tell him what he really wants for the big day. It’s rather a screaming fit if we go anywhere near the white bearded man.

J has never wanted to write a letter to Santa or has even asked us to help him do so. No North Pole letters coming from our home. No letters explaining how he’s been good or a list of what toys or books he wants this year.

In fact, J has never been able to show or tell us what he’d like for Christmas, or even his birthday (which is also this month). He’s unable to communicate his desires for gifts and again, I’m pretty sure he doesn’t understand the point of presents. It has taken him years to be okay with unwrapping a gift and even now he can only partake so long due to sensory issues. It’s gift bags for us. All I really want is to find that one gift , just one, that when J sees it his faces lights up with excitement. Maybe this will be the year.

So all of this Santa business isn’t J’s cup of tea and even though our Christmas traditions are nowhere close to what we experienced growing up, we’ve tried to make the holiday season special just for us. It hasn’t been easy, but we focus on the aspects J does enjoy instead of the ones he doesn’t. The Muppets Christmas Carol movie is a staple in our household, walking through all the Menards Christmas decorations multiple times on our visits is a must, and enjoying the heck out of our new Christmas Santa clock tower that lights up and plays music is a daily if not hourly occurrence (thank gosh is has an off switch!).

Though we don’t celebrate Santa as I enjoyed doing growing up, our ways of celebrating are just as important & special.

Behaviors, Expectations & Pineapple???

It’s the most wonderful time of the year…Maybe not so much when you’re an autism parent and even more so when you’re an individual on the spectrum.

I’ve noticed the hardships with J a little earlier than normal this year. It started prior to Halloween; aggressive behavior, standoffishness (my new word), needing his iPad like a crutch for self regulation & in social situations, and aloofness. It’s not to say we haven’t had any good or joyous moments, but the others have become more prevalent lately.

Though it’s hard, the best thing we can do is give him his space when able, let him work through his behaviors & emotions without hovering, monitor/control his iPad usage, and just let him be (which includes J voluntarily going to his room for quiet time to look at his books and stem – flap, bounce, and visualize as needed).

Our not so little boy is growing up and some of this behaviors are to be expected as he comes into his own. However, it’s hard when he can’t verbalize any of these emotions to us; to me as I’m the one he seems to be most upset with all the time. I do take it as best as I can and most of the time I’m able to cover the hole in my heart from his behavior directed primarily at me. Yet there can be difficult times and days where I find it hard to smile through the pain and have to focus only on intentional discipline (because a time out when Lance isn’t around is a no go as there’s no way I can get J to his room alone) with a side of distraction and a heavy dose of positive reinforcement.

I’m nervous how things may go in the weeks to come. Will these behaviors stay steady or get worse? Will his attitude jump off a cliff or will regression happen as all the activities, emotions and changes that come with the holiday seasons get into full swing?

Our consistent reminder is to keep J’s schedule (that we can control) as normal as possible which includes meals, iPad time and sleep. We’ve noticed over the past year how much this helps. We also have to remember, though this may be hard on family & friends and hard for Lance & I, that we can’t always participate like everyone else. Mainly, we can’t stay as long as you would like us to (or as long we we want to) because we need to do what is right & best for J and our little family, which is realizing when it’s time to leave. I can understand how expectations are neglected by these actions, trust me I get it, but it’s all for the best for our family’s well-being.

Being a parent of an autistic child, my own expectations have had to be thrown out many times. Though I still have small ones, they are not so big in scope anymore as J’s behaviors and attitude very much depend on how things will go. I know some will say “that’s how it is for all parents”, but it’s just not when you have an autistic child. It’s very much like comparing kiwi to pineapples. Kiwi is soft, fuzzy and sweet whereas pineapple is hard (to get past the surface), pokey (have to be careful when handling), and can have a bite to it before turning sweet. I’ve just realized through this analogy that J is very much like a pineapple.

So as the weeks progress and the holidays (with all their expectations) come nearer, I will take it one day at a time. I will remember that a bad moment doesn’t make it a bad day and a bad day doesn’t make it a bad life. I’ll remember it’s okay to give J his own space and have my own as well. I’ll remember to store those precious moments of laughter, giggles, smiles, cuddles, hand holding and hugs away for those times that can become too much and that those good times are just being hidden away but will come again.

Now wish me luck as I go try to hug my pineapple.

Stimulation & Autism

My sister reached out to me about the GREAT video below (click the link to watch). She said that after watching it she came to understand what Lance & I meant when we state that J is overstimulated. It’s not just about what has physically transpired during the day, but for J it includes all the lights, sounds, smells, people, and places. It’s a whole different universe for J compared to us mere mortals.

If one truly thinks about all the noises they hear throughout the day, they are all sensory simulates and often times a sensory overload for a person with autism. It’s quite easy for a neuro-typical (NT) person to process all these sounds without a blink. But a person with autism processes differently; separating all the sounds out (some sounds may be more acute than others), and some sounds also turn into visual input that need to be sorted through too. This is how some autistic minds operate. It isn’t something to look down on, critique or shy away from; it is something to understand and realize that this autistic person is trying to process our overly complex world.

The worst for those with autism is that most of their struggle is internalized until they can’t process anymore and a meltdown occurs. This is because more often than not, autistic individuals (especially when they are younger and sometimes into adulthood), are unable to express themselves when an abundance of stimulates occur.

I’m not an expert, but I am an expert on our son and his basic functions & feelings. I know when the shit is going to hit the fan, I can usually feel it in my gut. I know when it’s time to call it quits and go home (though I may not personally want to just yet). I know when a meltdown can’t be managed or redirected and physical strength and restraint is used to ensure no one gets hurt.

Over stimulation is is something we have to think about daily with our J. It plays a factor into what we can expect from him, how we monitor his wants & needs and how we analyze his behavior. A busy day at school can lead our boy to be overstimulated whereas a lazy Sunday at home may produce an anxious “let’s go let’s go” boy. We constantly assess his mood and that is why Lance & I always ask each other how J’s day was or how he was with each other. To be in the know helps us and more importantly helps our J.

https://youtu.be/Lr4_dOorquQ

What A Night!

We went to our first Autism Action Partnership event last night, an evening at the zoo. I was so excited to take J for several different reasons that other autism/special needs parents can definitely relate to. All of my excitement was well-placed as we had such a good time.

J was able to run amok if he so chose to. It wasn’t crowded at all and we really got to enjoy our time together without worrying about everything and everyone around us. It not being crowded also truly helped J not have any of the negative effects of over stimulation that usually occur with a day at the zoo from all the people and the noises. The quietness really helped him stay calm and focused versus an assault of elements that can and usually do overcome him during a typical zoo visit.

J was able to look at the things he wanted to for as long as he liked; whether it was the fish and stingray in the aquarium tunnel or the high ceiling and speakers in the dessert dome. There was no feeling of being pushed along by the crowd or being bumped into time and time again to allow J to enjoy what he wanted. We got to flow along with his agenda without interference.

J was able to be himself completely. He flapped, he screeched and yelped a few times, he pointed constantly at everything he was excited about sharing with us, he dictated where we went in the exhibits even if it was to something we had already seen twice. We were able to be and just hang out, soaking it all in.

Being there with other autism families was the best, there was no staring when J flapped or when he let out a high pitched yelp because of how excited he was. There were no looks of distaste or criticism for parents with kiddos having meltdowns or sensory issues. There were lots of smiles, and laughter, and looks of understanding between all the families there, an enjoyable time for all.

One of the things I noticed was the way parents talked to their kiddos. I could definitely tell I was around other autism parents. The slow, patient and soft voices of parents engaging, instructing and coaxing their child or children to see all that the zoo was offering was by far the biggest difference from a normal zoo day.

It was such a great experience, even for only the hour and a half we were there. J signed home and we were able to casually make an exit with no meltdowns of our own. Just a few backwards glances by J longing to go back already. I can’t wait to go back too.