My Autism Hero

It’s been a long time since you’ve heard anything from me, I know. Look at that as a good thing, since I tend to write when I’m stressed or depressed, usually something related to autism. So if I’m off the blogging radar for a while, assume I’m having the time of my life. Or at least hanging in there as best I can. This blog in particular is not really a stress release, or to celebrate anything amazing, but I’m hoping it is a bit more positive than my last 23 blogs. Maybe.

This last weekend was the first time that my husband and I had a night to ourselves, as a couple, for over a year. Well, most of the evening was spent at a birthday party for an 80 year old friend, but after that we got a hotel room, since the sitter was able to stay with Keegan for the weekend. We don’t do this often, and for many reasons. The main reason is because the sitters definitely don’t work for free, which is more than understandable. So, any overnight fee is quite expensive, especially for a special needs kid. Also, there is a slight chance that the sitter will be up for half of the night with Keegan, so I always feel like we need to pay top dollar just so they can take Monday off of work to catch up on their sleep.

We didn’t really know what to do with ourselves last weekend, my husband and I. Don’t worry, we didn’t get wasted, since it was a low-key birthday party. I guess we could have, but it probably wouldn’t have been very prudent. So we honestly just went to the hotel to sleep, which is something we never get, thanks to autism. That was the first night in a REALLY long time that I got at least 8 hours of sleep. I think it was closer to nine hours, which is unheard of in our household. But, Jesus, I needed it.

Most of the night was spent talking a lot about Keegan at the party, since so many people wanted us to bring him, and kept asking where he was. We always get asked this everywhere we go, and it drives me crazy. I totally get why people ask, but there’s not an easy way to say why we don’t bring our severely autistic nine-year-old with us to parties. One response we might give is, “Well, if you don’t want all of your breakable household items turned into a million little pieces, than you should be happy we left him at home.” Or, “He would not have been able to handle the noise level,” which is true in most environments. Or, “He wouldn’t be able to sit at the table and eat with everyone”, which is more than true in all instances. Then there’s always that one same question that comes out of their mouths next………”How old is he?”

I understand that the reason they ask this question is because my responses make Keegan sound like a pain-in-the-ass, unruly two year old. They may know he’s autistic, but they are comparing him to Dr. Shaun Murphy on The Good Doctor, or their neighbor’s seven year old autistic daughter that always comes over and sits nicely for their dinner parties. Keegan isn’t like that. At all! His little body doesn’t allow it, for lack of a better overall explanation.

I will give you two real time examples, which both happened today. First, I was talking to Keegan’s occupational therapist in the waiting room, and in less than 10 seconds, Keegan found a dust bunny next to the couch and shoved it in his mouth. It was a good sized chunk of dust, too, which I had to pull in strings out of his mouth. Then, tonight I was trying to figure out Keegan’s toy accordion, and in less than 20 seconds, he opened the tub of sensory water beads. I not only forgot that he had that bin of beads, but I didn’t think he could open the container. I’m not quite sure how many balls he got in his mouth and swallowed, but I’m sure in that 20 seconds it was at least three or four.

All autistics are different, and I wish people could just understand that. I know it’s recommended to take autistics to outings and social gatherings, regardless of severity or age. And I agree with this. But, there’s just some times that I don’t want to chase him around everywhere. He can’t be left alone, or out of a parent/caretakers vision for more than two seconds, and that’s no exaggeration. My child is the sweetest and cutest child in the world. And believe it or not, most who know him would actually say the same, not just his biased mom. But his autism is hard. And when you want to relax and enjoy friends, and maybe drink some wine in-between, you simply can’t when you are with Keegan. There would probably be wine all over me, or you. And, I would have zero chance to catch up with anyone. And some days I don’t want to be an autism mom. I just want to be Karli.

But I digress……..

I know I said this blog post would be positive, and I’m getting there.

So, back to the party last weekend. A woman at our table was talking about her son winning his soccer game earlier in the day. Then another mom chimed in about her daughter going to college next year. I then looked over at the “kids table” and saw a group of about six kids, ranging in age from 5-10 years, playing silly games with each other, and themselves. These are all neurotypical kids I’m speaking of. Or in non-autism-world language, these are “normal” kids.

My husband was hearing and seeing the same thing, so I knew what was coming next. He then turned to me and said, “I wish Keegan could have joined us this weekend.” Then came the usual, “I wish Keegan was neurotypical, and we would be taking him to soccer practice, and excited about him going to college, too.”

But here’s where I had an epiphany of sorts. A crazy thought crossed my mind that I honestly don’t think I’ve had since my son’s diagnosis. I actually felt more sorry for these neurotypical moms than I did for myself. Then immediately after I had that thought, I questioned myself in my head what I meant by that, and why I thought that. Yes, I would love to have a neurotypical child. But, I realized in that moment how lucky I was that I had this little man in my house that was teaching me so much every single day, that was making me a better person every minute, and was also strengthening my marriage. This is not to say that a “normal” kid can’t do these things to parents, too. But, it’s totally different when it’s on the special needs scale. When you have a severely autistic child, you appreciate all the little things so much more. You pay it forward when you can. You reach out to others more, both for help and to help, because you understand how hard life is. You appreciate that life so much more, because you have a reason to live it. You get to know yourself so well, usually because you don’t have a choice, but still. You judge less, because you now know too well how it feels to be judged, which unfortunately happens too often with special needs parents.

I’m not saying that Keegan has made me perfect, but he has helped me love my perfectly imperfect self. I mean, how many people are lucky enough to have a little person teach them more about the world and others than they ever thought possible.

Keegan is my hero!

 

Progress Schmogress…….The Autism Progression Myth 

It’s been a REALLY long time since I’ve done one of these. I’ve been busy writing my book (and having some fun in between) and I finally got some ‘blog inspiration’ today.

Sometimes reading other people’s blogs about autism will strike a chord in me and make me want to expand or dispute that particular topic. Todays topic was something like, “What is the hardest part about autism?” This particular writer said that her big thing was ‘other peoples’ perceptions and misconceptions about autism in general, and how autistics have not been accepted into society as a whole. I 100% agree, and this issue is a biggie for me too. However, it made me think about what bothers me the MOST about having a child on the spectrum, and that answer was easy. Unfortunately I can’t sum it all up in one sentence, but I will try to narrow it down:

Most people, even the autismly uneducated (I just made that up, but I like it), know that all children on the spectrum are different, and have different abilities and disabilities. But with that also comes the assumption that all autistics will improve with early intervention and therapy. THIS IS MY HARDEST PART!!! Because they don’t!

I can only speak for my own experience with my son, but to explain a little about my precious Keegan, he has always been on the spectrum in my opinion, even since birth. However, a lot of his milestones were just slightly delayed. Even though he wasn’t saying “mom” or “dad” before he was two years old, he was counting to 20, naming every single color he could see, along with every shape, including the dodecahedron (yes, that is a thing–It is 12 sides). Sure, most of it he learned from Muno and Brobee on Yo Gabba Gabba, or Geo and Bot on Team Umizoomi, but he was learning, retaining, and demonstrating. We started occupational therapy, speech therapy, physical therapy, ABA therapy and every other therapy before he was two and a half. We were also seeing a developmental pediatrician, chiropractor, and a psychiatrist. Plus, we started strict diets and nutritional supplements. We read it all and did it all (and I’m not even listing everything). Luckily we could afford it, so my husband worked for it, and I drove Keegan all over for it.

Jump ahead 4 years………..Keegan is almost six and a half. He cannot count to 5. He is still not potty trained. He still can’t say “mom” or “dad”. He lost most of his speech. He lost his concentration and focus for almost everything. He has zero interest in absolutely everything (besides dribbling a ball–he can do that like nobody’s business). He says ‘orange’ when he really means ‘blue’, and calls the letter “D” an “F.”

Somewhere around 30% of autistics will regress around age 2-3 (and no, it is not because of the fucking MMR shot!! JS!). I’m not sure on the percentage of those who gain those skills back, but my child never did. Did we give up on him? Hell no! Are we going to give up on him? Absolutely not! He is still attending ABA therapy daily at the Marcus Autism Center, and has for over a year. He is still getting speech and occupational therapy, and many more treatments and therapies that we have added and/or never stopped.

Another annoying assumption that I get asked all the time is “when will he get better?” There is no answer to this. He might get better, but he might not. I didn’t think he would regress as much as he did. I also thought he would at least gain some of his skills back by now, but he hasn’t. Therefore, I have no idea if/when he will ever get ‘better’.  If I knew when, I would put that expected “better” date on the calendar and have the biggest fucking party when the countdown ends. I would do so much more and stress so much less. But I don’t know and I may never find out.

I guess this regression issue hit hard yesterday when I received Keegan’s new scores for the VB MAPP (verbal/behavioral milestone assessment). He had little to no progress in most areas since his last assessment in 2014. That feels like a super strong punch in my gut. Also, his IEP is coming up next week, and they are talking about a new placement/new school for him, and that has me hurting inside, too. And to top it all off, I went to see the new movie, The Accountant, last night. It’s about a high functioning autistic, but I won’t give away the story. Anyway, these kind of movies always get me thinking about how others will view autism based on a certain character. I know many parents of autistic children hate the movie ‘Rain Man’ because of the stereotype it portrays. Well guess what…Rain Man does exist whether you like it or not……..he is my son.

Just like all autistics can range from the low functioning ‘rain man’ to the high functioning assassin/’accountant’, all autistics can improve/regress on all different kinds of levels. Sure, therapy should help, and most of the time it does. But sometimes it just doesn’t. I read a study once about two very similar autistic children who received the exact same treatments and therapies at the exact same time and the same frequency from the same person. One child progressed significantly while the other did not progress at all.

So, please don’t stop asking questions, even if I may not like the question. More importantly, you can ask even when I don’t like the answer I have to give you. Just remember my favorite saying….”If you’ve met one child with autism, you’ve met one child with autism”.

Autism Awareness vs Acceptance: Does there have to be a difference?

Well, it’s that time of the year again……………Autism Awareness month. Where puzzle pieces and ‘light it up blue’ are in full effect. Normally I am posting crap all over Facebook, shoving this so-called “awareness” into people’s faces. However, I have been seeing a little too much negativity towards awareness and a push towards acceptance “instead.” Aren’t they, in a way, the same?

Everyone who knows autism, and even the ones who have no clue, have probably heard of an organization called Autism Speaks. If you haven’t, (because you obviously live under a rock), the group calls themselves “an autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism.” And to my understanding, they are the ones who started the “blue” campaign to push awareness, and created the puzzle pieces to signify autism.  Sounds like a good organization, right?

Well, not according to some.

Because I am THAT mom who reads anything and everything there is to know about autism, I have lately been focusing on what the actual community thinks and feels about autism. Not the parents, but the autistics themselves.

I first came across some information on whether the community, as a whole, wants to be called “autistics” or “those with autism”. There’s actually quite a debate about this, but overall, I see a push in the “autistics” category. Most would rather be labeled autistic than have the “condition” of autism. They believe that with the word ‘autistic’, people will see them for who they are, and will see that autism is not just a “part” of them………….a part that should be fixed……a ‘disease’ they have that needs to be cured.

First of all, I’m going to listen to an autistic about autism before I’m going to listen to anyone else. So this got me reading more. I soon realized that some on the spectrum are not big fans of Autism Speaks. And given the explanation above, I can see why they don’t really care for the organization. If Autism Speaks focuses on a ‘cure’, they are not focusing on the person. ‘Treating’ insinuates something is wrong and must be changed. Most autistics don’t want to be changed.

A particular blog post that I came across when doing my research discussed the fact that the organization only gives a very small amount to the actual autism community/families, something like 4%. It also emphasized the fact that there are no actual autistics that are employed in the Autism Speaks organization, only parents of. The post criticized the organization for pushing awareness instead of acceptance.

So, now for my two cents…………I think awareness and acceptance go hand in hand. There doesn’t have to be a great divide between them. Personally, I don’t like a lot of the things that Autism Speaks stands for either, but there are also a lot of good things. And, I bet if it wasn’t for AS, there would be a lot less information out there on autism in general. Also, because the group is quite large, even that 4% will go to a lot of families.

Do I want someone to find a “cure” for autism? Absolutely!!! Call me a horrible person, I really don’t care. In my opinion, I would be a bad mom if I enjoyed watching Keegan suffer, and I’m here to tell you that I don’t! I would be a bad mom if I didn’t care that my child may go his whole life without ever saying a complete sentence, but I do care. I would be a bad mom if I didn’t care one way or the other that Keegan learn daily living skills so that he can actually take care of himself when I die, but I do care and need him to. And these are all things that impact Keegan’s life in a negative way due to autism and autism only.

Do I want to change his precious and innocent soul? Hell no. Do I want to change his silly quirkiness? Never! Do I want to wipe that ridiculously amazing smile off of his face? Absolutely not. But all of this, along with everything else that makes Keegan perfect, is not the autism part.

I don’t know what my son thinks about having autism, because he can’t tell me. I do know he cries when he can’t think of the right word. I do know he has to stim almost non-stop all day in order to help his body feel normal. And, I also know that he struggles a lot with fine motor skills that most kids his age could easily do 3 years ago. And I would like to think that Keegan would want that “cure”, too.

I want Keegan to embrace his autism someday, but because of the barriers that autism creates, he may not ever develop a capacity to do so. Awareness isn’t a negative thing. It’s good to be ‘aware’ of everything about autism. Acceptance is important, yes, but we don’t stop helping our children just because we have accepted the autism.

So go ahead and wear that blue tomorrow for Autism Awareness Day,  and sport that puzzle piece paraphernalia…….I know I am. This doesn’t mean that I accept Autism Speaks, it means that I want the world to know that I love my child and every little thing about him. It says that I’m proud that he works so hard despite his struggles, and I’m not afraid to show it. And most importantly , I wear my blue and sport those puzzles because it says, “ask me anything you want about autism and I can tell you what you need to know about both autism awareness AND acceptance.”

 

 

5 Minutes of Autism

As I pull into the parking lot to the Marcus Autism Center today for probably the 100th time, an odd memory comes to mind. I don’t know why it comes on this particular day–there was nothing I saw that triggered anything, or no weird vibe from the outside. But something made me remember the first day I drove by this particular Autism Institute.

It was about 10 years ago, and I was on my way to my hairdressers new place. It was not my hood and I was not really familiar with the area, and when I saw the large center, I thought, ‘wow, I didn’t realize there was an actual center just for autism’. My next thought was something like, ‘I hope I never have to step foot into that place.’

I have always been horrified of having an autistic child. I had worked with them directly and seen the pain on their parents faces, and never wanted to be “that mom.” I never wanted to have to read my childs mind, or have to ‘put up’ with a disastrous temper tantrum in the middle of the grocery store–getting bad looks and eye rolls. These fears are not necessarily an insult to the autistic child and/or family as much as it is an insult to myself.  I knew that my limited coping skills and selfishness would get in the way of being a decent parent and human.

Fast forward 10 years and here I am bringing my (mostly) non-verbal 5 year old for his daily Language and Learning Center appointment. My biggest fear of ‘living with autism’ has come true and I’m still alive. Barely, but still alive. Probably a shitty mom on some days, but still the best mom I can be. And, probably an overall crappy human when I don’t get any sleep due to my autistic child (like the typical 5 hours we got last night), but trying my best to be decent.

As we walk into the building, I see a mom walking out the door pushing a stroller with her son, who has an oxygen nasal cannula. I recognize the sadness in her eyes. My child has luckily been blessed with overall good medical health, so not that kind of sadness. But the ‘I hate seeing my child suffer’ kind of pain in her eyes.

My son, Keegan, is his almost-usual sweet self as we enter. He quietly goes to his “spot” to wait for his therapist. As I am standing in line to check-in, another boy in his class begins to cry loudly, while his grandma holds him tight and rocks back and forth, trying to calm him. I have known this particular child for a few months and know this is not like him. He is usually just like Keegan, happily running around ignoring anyone and everything around him.

But today was a little different. Keegan was pretty much the same as usual, but the vibe inside was definitely off. It must have been the ‘stuck inside from the rain and no therapy because of Christmas vacation’ kind of vibe. While this sweet boy cried uncontrollably, another girl grabbed Keegan’s stim toy out of his hands and shoved it in her mouth. Luckily, Keegan didn’t seem to mind, but the child’s dad apologized and gave the toy back to me. It then hit me how graciously nonjudgmental this place is. As much as I was dreading it from the outside many years ago, it is the safest and most sympathetic autism-friendly location I have ever been to. I never have to worry about the “looks and eye rolls” that I was dreading many years ago. I know when my child runs over and licks the wall, or stands in the window pane, I will not get any nasty looks. I will only get the same compassionate look that I was giving the mom with the boy on oxygen, and to the grandma holding and squeezing her grandson, and to the dad whose daughter took my son’s toy. The ‘look’ that, in my experience, only special needs parents possess.

Next to the waiting area is the “severe behavior” unit. This is exactly what you would think it is. Everyday, I see a group of 6 employees escort a young lady through the lobby, circling about 3 or 4 times. I’m assuming its part of her protocol, maybe forcing her to get used to loud groups of people and other kids. Except, I’m not going to lie….it is a little disturbing. Everyday, all 6 employees are covered from head to toe in protective gear, and 2 of them are actually holding her by the arms leading her through the building. I don’t mean its ‘disturbing’ because I have never seen anything like it. I have worked in an inpatient psychiatric facility for 13 years, I have seen it all. But, disturbing because I can only imagine what it’s like at home for her family, assuming she has family and a home to go to. I mean, if it takes 6 adults, all in protective gear, to walk her 10 feet, what is it like for her parents?

I have never seen this young lady actually act out, until today. In my opinion it wasn’t that bad because, again, I have seen a lot working with majorly psychotic patients.  But it was enough for them to force her onto the ground, which I’m assuming was for her own safety. At this time, the dad who handed the toy back to me earlier kindly shielded Keegan from the chaos. Keegan wasn’t necessarily in the way, it was just that instinctual parent reaction, especially the autism parent reaction, to protect our kids who can’t protect themselves. And I appreciated it.

While all of this was going on, another boy, about 9 years old, was having a meltdown because his mom wouldn’t give him the pizza she was holding, which was actually part of his reward system for therapy. Therefore, he couldn’t have it yet. She appeared understandably frustrated, and raised her voice to tell him to stop. This, of course, made him scream louder and harder, and that made mom more frustrated. The cycle continued until his therapist finally came and got him and the pizza from the lobby for therapy. Even though I know mom felt comfortable in that environment, I still gave her the ‘compassionate look’, because I know some days are worse than others.

When Keegan’s therapist came out, and the chaos of the last 5 minutes were over, the only thing I could do was take a deep breath. I sat in the lobby for a minute, watching the girl on the ground, and began reeling with various emotions. I felt gratitude that I have somewhere I can go with Keegan that I know I will never get dirty looks, eye rolls, and negative comments. I felt sadness for all of the parents that have to deal with this on a daily basis like I do, and even more sadness for those who have it WAY worse than I do. I smiled at the thought of the special camaraderie that exists between autism parents, where you never need an explanation. And even though the last 5 minutes were full of screaming, negativity, and chaos, I was content in my thoughts of the downright benevolence toward each other in this small community that is autism, even if it is just an understanding look.

We got this!!!

The Deadly Side of Autism

I’m sure you all have heard the recent top stories about parents who attempted to, or successfully, kill their autistic child.  The big one this week is about a mom who threw her six-year-old autistic son off of a bridge into the freezing cold water. I’m hearing people respond to such stories with disbelief and disgust, as can only be expected. But I keep hearing one specific question that I might be able to help with…….”How could anyone do that?”

I will tell you how.

Before I begin my depressing discussion of the life that is autism, I want to be very clear that I do not agree with or condone harming any child, autistic or  not. I also have never had a feeling or urge myself to harm my child. EVER! These ladies who have killed, or attempted to kill their child,  will get what they deserve. And I hope it’s not pleasant!

However, if you really look at why things like this happen, you might not be so shocked when you hear these stories.

We’ll start with the woman who attempted to kill herself and her 15-year-old autistic daughter by carbon monoxide poisoning earlier this year. I don’t know all of the details of this case, and I have never met them. However, from what I heard, this teenager was very aggressive and violent. A large percentage of autistic children possess this unfortunate behavior. This aggression can include, but not limited to, hitting, punching, scratching, biting, and kicking either themselves or their parents or both. Imagine that all the while you are getting beaten up by your own flesh and blood, you have to do the basics to take care of the autistic child as well.  This usually includes necessities that ‘normal’ families don’t have to do with teenagers, such as making their food, sometimes feeding them, bathing them, brushing their teeth, dressing them, holding onto their arm while they are crossing a street, helping them with basically all daily living skills, because nobody else is there to do it.

I know most of you are thinking ‘the parent needs to stop allowing the aggressive behavior to happen.’ All I can tell you is to do more research on autism because that is SO much easier said than done. Behavior problems can get better with intensive therapy, but is not always the solution. Which brings me to the other unfortunate dilemma in the autism battle……affording the treatments. Most insurances do not cover autism services (they are working on Ava’s Law here in Georgia).  And, if you make decent money you are not eligible for any services such as Medicaid, waivers, disability, etc. So, most treatments for extreme behaviors are out-of-pocket, and not a possibility for some. And to add to the frustration is the actual services out there. An excellent therapist, wiling and eager to work with an aggressive child, is few and far between.

I was talking to someone recently about the limited services for autistic children with behavior problems and they said, “Why can’t they just go to an inpatient treatment center or group home?” Legitimate question, but these types of facilities pretty much do not exist. There are a few inpatient hospitals that have specialties with autism, but they are VERY limited, and definitely not cheap. (I think the only one in the Atlanta area is about $600.00/day).  There are also group homes, but most are only occupied by adults, and are also a 100% out-of-pocket expense.

Now, still on the topic of aggressive behavior……..I’m not sure if this girl in particular possessed any self-harming behaviors, but hurting themselves is very common with autistic children as well. Imagine watching your child beat their head violently against the floor, causing bumps, bruises, cuts, abrasions, sometimes life threatening injuries. And there’s absolutely nothing you can do about it. I heard a therapist tell an autism parent once that the only thing they can do when this happens is to provide a soft surface to lessen the blow. Also, the other day I saw a picture of an autistic child who would scratch at his nose violently during his outbursts. He barely had half of a nose still left on his little face, and it might be completely gone by now. There really are no “solutions” for many problems in the autism world, even if you can afford it.

OK, so I’m still not done painting the picture that is autism. Now for the everyday battles…………

The look on your childs face when they can’t verbalize what it is they actually want/need can be heart wrenching when occurring on a daily basis, sometimes many times throughout the day……..The fact that approximately 80% of parents with an autistic child get divorced should tell you the amount of stress it causes the family in general…..The fact that some children on the spectrum hate to be touched at all can be heartbreaking, especially for a mother, since it is our ‘job’ to be the nurturer…..The fact that our support system slowly dwindles down for numerous reasons……Knowing that your child will be the target for bullies, and will not have the ‘street smarts’ to defend themselves…..And the biggest one, in my opinion—-worrying every day all day about who is going to take care of our child when we are gone. Parents of ‘normal’ kids only need to worry if their daughter will turn out to be a stripper, or their son end up a drug addict. All we want is for our autistic child to be potty-trained by age 18, or to be able to feed themselves with a spoon, or be able to drive a car. And if they can’t do these things on their own, who will be there to help them?

The list actually goes on and on, but I think you get the idea as to the everyday worries, stressors, and limitations that are involved in a typical autism family. Do these challenges make it OK for a parent to kill their child? Of course not. However, I do think the constant flow of one problem piling onto the next problem (the snowball effect) can really break a person down, and may trigger any instability that may already be present otherwise. I read that the woman who threw her son over the bridge had recently found out that her husband was diagnosed with multiple sclerosis, causing him to be unable to work, and unable to continue providing for the family. I believe they had recently separated as well. Therefore, it is not just the direct stress of autism, but the addition of everyday struggles everyone faces that exacerbates the problem.

There is only so much a human being can take. It is sad that some parents get to the point where they feel that killing their child and/or themselves is the only answer. Everyone you meet is fighting some sort of battle–some more extreme than others. I personally am surprised I don’t hear of these terrible incidents more often, especially in the autism community. This journey is hard, so please remember to take care of yourself.  And for those who aren’t directly affected by autism, but know someone who is, keep an eye out for any odd behavior and ask them if they need anything. And please reach out because I’m almost positive they won’t.  As you can see, they have enough on their plate.

To The Manager At The Theatre………from a fellow autism parent

I know I haven’t written a blog for a while, but I honestly haven’t felt moved by anything autism related…………until today.

My life has been quite the typical humdrum autism parent life lately, you know, being the chauffeur, cook, alarm clock, maid, and mind-reader that requires about 90% of my time. The other 9% goes to my sleep, and I guess the 1% goes to my “me” time, whatever the hell that is.

So my hubby had to work this whole weekend, which usually means park time, or just playing outside with Keegan. Unfortunately it won’t stop raining, so the fun had to stay indoors. After being stuck in the house all day and night Saturday, I decided to join my friends and their 2 kids (one with autism and one neurotypical) at the movie theatre Sunday afternoon. Now, we have gone to the movies a handful of times since Keegan was born, and was only slightly successful at the sensory-friendly one. All others were an epic fail. I wasn’t sure if I was up for the challenge, but I was fully equipped with a purse full of goodies. You know the goody bag—skittles, oreos, goldfish, etc. And to make it even better, my friends already ordered our popcorn and french fries, which arrived right after we sat down.

I thought we had it covered……until we didn’t.

We were seeing a special screening of Fantasia, the old Disney movie, celebrating it’s 75th Anniversary. I didn’t realize that the first 10-15 minutes of the screening was going to be a ‘behind-the-scenes’ look at the Philadelphia Orchestra’s rehearsals, along with a discussion by the conductor. I also forgot that typical screenings are very loud to the autistic ear.

So, as Keegan sat there with his hands over his ears and his eyes wide-open trying to figure it all out, I was trying to shove popcorn and fries in his face to distract him, knowing he was starting to “get there”, if you know what I mean. I even broke out the skittles and the stim toy, but they were also a no-go. We were already getting the ‘stares’ because of his vocal stimming sounds, and as I looked around, I noticed there were very few kids in the theatre. The youngest ones were teenagers, so I figured the adults just wanted to go to re-live memories of when they saw it as a kid, and bring their older kids with them.

After a few minutes of squirming and trying to get out of his seat, and me blocking him, Keegan looks right at me and says “go outside!” Coming from a child of VERY few words, both literally and figuratively, this translates to “let’s get the f*#& out of here now, mom!”

I grabbed my purse and goodies so quick, scooped up Keegan, and stomped past approximately 12 people in the isle on my way out, saying “Sorry, don’t worry, we are NOT coming back…….Sorry, don’t worry, we are NOT coming back,” over and over again.

Once we got out and into the lobby, I put Keegan in a chair and sat down beside him. I thought maybe if he chilled out, we could go back and sit in chairs closer to the exit door for an easier escape. Now, if only I could talk him into staying quiet and in his seat. This task is obviously close to impossible for an autistic child with very little verbal speech and even less receptive language. My motivation was to get back in there and finish those yummy fries (and they were still warm 😦 ).

As I got up to attempt another try, I realized that I left the tickets on the table next to the popcorn. Luckily the lady at the counter remembered me and told me it was fine to go back in. I then asked her if I could sit somewhere else closer to the exit, since the theatre was assigned seats only, and she told me to check with the front desk because she didn’t know. As we were talking, a gentleman that obviously worked there, and who must have sensed that “look” on my face, came up and asked what was wrong. I explained the situation and told him that my son was autistic, and that we were going to go back and try again in a different seat, if that was OK.

This nice man kindly said, “Here, follow me and we can get you guys a good seat.” As we approached the door to that particular theatre, Keegan’s anxiety became more apparent, and he began whining again. It was quite obvious at that moment that he did NOT want to go anywhere near that place again, so I said “You know what, it looks like it’s not going to work, but thanks anyway.” The man then looked at me and said, “I have a 25-year-old daughter who is also autistic, so I understand.”

I knew at that moment that he DID in fact understand, and that meant the world to me. I always hear people say, “Oh my neighbor is autistic, so I understand”, or “my cousins’ nephew has autism, so I get it.” But trust me, you don’t, and I completely respect that you don’t. But this was a parent who had been doing this for 25 years, and he DID get it. He was even doing it before autism was the cool thing to do (LOL), and when there was even LESS services than there are now. In fact, he probably “got it” more than I did.

This man then completely amazed me and said, “wait here, I’ll go get you some free passes.” As I’m standing in the dark hallway waiting for him to return, I am hoping that the staff walking up and down can’t see the gleam of tears in my eyes. When he returns, he hands me a pile of free passes, along with his business card. On the back of his card he had written his cell phone number. He then said, “Please call me if you need anything, passes, resources, advice………whatever you need.”

I was at a loss for words, and just told him thanks, and that the kind gesture meant more to me than he will ever know. I then carried Keegan to the car, strapped him in, got into the front seat, and cried for a good 10 minutes. Thank God it was raining so nobody could walk by and see me.

I don’t really know exactly why I cried, because it wasn’t ‘that time of the month’ for me, or anything. I think it was a mixture of the extreme emotions of disappointment and gratitude at the same time, of frustration and empathy at the same time, and of being unable to change the situation and accepting that I can’t change it at the same time. It can get very frustrating to see how easy things are for others when it is such a hard struggle for those with autism and their parents. And, it’s hard when you get another slap in the face that an attempted outing was once again a failure. But then again, it is so rewarding when you meet someone with a compassion that is so familiar, and an understanding that you can only feel with very few people………and free movie tickets to boot!

So, to Mr. Subko, thank you for making a hard time a little less hard. Thank you for telling me that it does get easier. Thank you for saying ‘hi’ to Keegan, and telling me that your daughter also responded with echolalia after Keegan said ‘hi,hi,hi,hi’ back to you (and thank you for knowing what echolalia even is). But most of all, thank you for actually understanding when you said, “I understand.”

I Can Hate Today’s Autism Meltdown, And Still Love My Son

Can you still be grateful and have a shitty day? Can you still be lonely and have all of the support system in the world? Can you be a millionaire but still be depressed? Can you take all necessary steps to improve your situation, and yet make little to no progress? Personally, I believe the answer to all of these is “yes”. The world is not black-and-white and neither are human beings (and I don’t mean Caucasian and African-American). There are many shades of gray (and I don’t mean Christian Gray).

I read one of those typical depressing mom blogs the other day (yes, I know my blog fits in the ‘depressing mom blogs’ category LOL), and since it resonated with me I almost shared it, until I read all of the comments. There was not one comment supporting the struggling mother. Every comment was very judgmental, hurtful, and aggressive. All of these “moms” took it upon themselves to tell the writer that she was ‘ungrateful’ and ‘bitter’ because she was complaining about an aspect of motherhood. Just because she was bitching about one negative thing, now she’s a horrible mom????

It reminded me of a similar experience that I had. One of my blog posts triggered another autism mom to bash my honesty, and told me that I was weak, that I didn’t believe in my son, and that his problems were because of me. Now I am all for constructive criticism, but basically calling me a shitty mom is not very supportive. Most moms, including myself, blog as an outlet. There’s not many people who understand exactly how you are feeling. And, it’s usually hard to talk to your husband about mommy problems (no offense, guys), so you got to let it out somewhere.

There’s also the issue of varying personalities. I’m personally not one to smile and say that everything is perfectly fine when it’s not. If a mom wants to bitch about a crappy aspect of her day, please let her do so without judgement. And if ‘pretending that everything is OK when its not’ works for you, then keep doing it, but don’t bash us. Or if someones opinion or advice is what you are looking for, make that known and clear.

If a friend told you she was going to jump off of a bridge because she was so depressed, would you give her the address of the bridge that had the most successful suicides and tell her to do it? I would hope not. Sometimes I feel this way when I am upset about something and venting, and someone tells me everything I am doing wrong and how I need to go about doing it right (and makes me even more angry when I am already doing said suggestion, and they still insist on passive aggressively telling me what to do). Now, I don’t mean when you actually call someone and ask for help or feedback. Then the suggestions are warranted.

Most blogs, and just plain bitching about the day, are just a release to make us feel better. It’s not an opportunity for someone to tell us how shitty we are, and how they have all the answers to make us as perfect as they are. I personally know, as a therapist, that many people need a swift kick in the ass and good direction for positive change, but you pay me for that. Plus, we aren’t even supposed to give ‘advice’ to our patients. Instead, we care for them, therapeutically support them, help them see the best alternatives, and provide resources.

I received a huge compliment yesterday after sharing a depressing blog post (not my personal post, but one I REALLY felt). An old friend told me that my honesty “allows moms the space to keep it real and to be perfectly imperfect”, and that “through honesty there is strength.” I appreciated this more than she will ever know. I, too, appreciate and welcome honesty, no matter how negative. I believe that’s why moms blog—-to “keep it real” and admit that they are “perfectly imperfect.” There’s  no need to reiterate how imperfect we really are. We already know it.

Sometimes all we need is a “I’m thinking about you”, or “I don’t know what you are going through, but I’m here for you,” or just a “you are doing a great job, mom.” Sometimes there is not necessarily a solution, but just an understanding of the situation. Or even if you don’t understand the situation, let them know you don’t understand but you want to.

Just because I always complain about autism and everything negative that it encompasses does not mean that I hate my child. Now, I will admit that I hate autism for the most part, but autism is not what makes my child. I would literally walk through fire and drink molten lava for my son, so hating autism doesn’t equal hating him. Most of my blog posts are negative, but does this mean I hate my life? Some days I probably sound like I do, but talking about it or blogging about it makes me feel better, and usually makes the next day wonderful. Some days are going to be shitty, and I should be able to talk about them without being judged, or told what to do. And, yes, I cry. Sometimes a lot—-but don’t assume that means I’m weak, or that I don’t have it under control beneath those tears.