The Ungrateful Side of Autism

I’ve said this before, but I tend to write when I’m at my wits end, so I guess that’s where I’m at! I feel like one of those people who only pray when they need something. Although, I stopped praying years ago, and this week reminded me why.

I’m surprised that I never did a blog post last year while Keegan was suffering with a medical issue. Due to his autism and inability to communicate what was hurting or what he was feeling, we were unable to diagnose or treat him for a couple of months. We finally figured it out and fixed the problem, and ever since then I wake up every morning with gratitude that my child is not in excruciating pain anymore. That whole process made me realize that I can handle pretty much anything life throws at me….except when my child is suffering and there’s absolutely nothing I can do about it.

Thanksgiving is that time of the year that we remind ourselves what we are thankful for. I know there is much more to Thanksgiving than that, but that’s the part I’m going to focus on now. It’s easy to get caught up in life and forget what truly matters, so sometimes we need reminders. But that also doesn’t mean that we can’t feel sorry for ourselves at the same time. I posted something on Facebook yesterday about how you can be sad and grateful at the same time, just like you can be full and still eat pie. It was supposed to be a silly Thanksgiving post, but I think it’s important to note that you CAN be sad and pissed off and miserable and fucking hate life, but also be grateful at the same time. That’s where I am.

After Keegan‘s medical crap last year, I remember telling myself that maybe if I woke up every single day consciously grateful that Keegan was healthy and happy, he would never have to suffer again. You know that feeling when you get sick or hurt and you wish to God that you would have appreciated every moment that you felt good? I did that. Every time Keegan would drive me nuts with his incessant happy stimming at 3:00 am I would say to myself, ‘at least he’s not screaming and crying in pain anymore’. And I hoped that would be enough. I hoped that if I was grateful enough, I would be rewarded with never having to watch him suffer again.

Most of you already know that my 12 year old son, Keegan, is very severe on the autism spectrum, nonverbal, and everything that comes along with that. I always tell people that you wouldn’t understand unless you lived with severe autism. But I’m finding more often than not that I should be saying you wouldn’t understand unless you lived with Keegan. Every autistic is different, just like every person on the planet is different. For instance, I know some kids, both autistic and neurotypical, have zero problems swallowing pills or actually like the taste of liquid medicine. Unfortunately, my child not only can’t swallow pills and hates liquid medicine, but literally requires an entire football team to hold him down and pry his mouth open to try to get it in him, and even that process is very likely unsuccessful.

My husband decided to take a two-week vacation out of the country with some friends over Thanksgiving. I told him I would prefer he not go during the holiday week, since support can be limited, but here we are. (Read my previous blogs if you’re wondering why being alone with Keegan for long periods of time is a challenge). I figured I would be fine though because Keegan had a few days of camp, plus the babysitter was going to be available.

Well, here’s a recap of the week so far…..

Sunday night, Keegan only slept from 11:00pm-3:00am. I decided not to nap since I figured he would sleep the following night to make up for it. Well, he didn’t.

When Keegan came home from camp Monday, he was acting sick and went upstairs at 7:00pm and crashed. If you know anything about Keegan, you know he’s never asleep before 11 PM. However, instead of sleeping all night, he decided to wake up at midnight and not go back to sleep. He had a fever so I figured he would at some point, but no. Because he was sick, I couldn’t take him to camp and I remembered that the babysitter was at her other job all day and night, so I knew I was fucked. I was averaging a total of four hours of sleep for a combined two nights, and I had to take care of a sick child all day after being awake since midnight. The only time Keegan was not crying was when we were driving around, and he could have his head sticking out the window. Do you know how hard it is to drive around aimlessly for miles when you are going on very little sleep? At one point I almost went through a red light. Thank God I caught myself in time. Then, during the next drive-around I realized that I had forgotten to put Keegan’s seat belt on. I knew right then that I couldn’t do it anymore, and I needed reinforcements. Sounds easy enough, right?

Jump ahead to Friday….Keegan still has a low-grade fever, he still hasn’t gone to camp, he’s still barely eating or drinking, his babysitter is MIA, I haven’t had a full shower in 3 days, I haven’t brushed my teeth in 2 days, I’m still averaging about 2 hours of sleep a night for 5 nights straight, and by some miracle, both Keegan and I are still alive.

Have I asked for help? Of course I have. Have I gotten it? Of course not…it’s Thanksgiving. People have lives and families and holiday plans. Have I told them that I’m desperate and not OK? Yes, but it doesn’t matter when it’s completely unavailable.

I haven’t been able to take Keegan to the doctor because I am by myself, and because it’s a holiday. However, even without those obstacles, a football team is required to carry him into the doctors office, and then continue to hold him down so they can look at his ears and mouth and nose etc. This said football team would then have to hold him down to get any kind of medicine inside of him. So if I can’t even find someone to come over to watch him while I take a quick shower, I highly doubt I can find a football team.

As I said before, I can handle pretty much anything, except when my child is not okay. And my child is currently not okay. Therefore, I am not okay. But what choice do I have? People always say to me, “I don’t know how you do it”. Well, I don’t have a choice. I would love to have a choice. Sometimes I would love to say, “you know…I don’t feel like being strong today.” But what choice do I truly have if Keegan needs me 100% and there’s nobody else to do it? I would love to be able to call in reinforcements, but unfortunately sometimes they do not exist.

Please don’t get me wrong….my grateful list is long and strong. But some days that list is hard to find. So if any of you guys are struggling with finding your list, maybe I can help.

If you are able to go to bed whenever you want and wake up whenever you want, (besides work obligations, of course), you are blessed.

If you have someone that you spent Thanksgiving with, plus had the ability to make some yummy food, you are beyond blessed.

If your children are happy and healthy, or can at least tell you what hurts, you are blessed.

If your child doesn’t require the entire Atlanta Falcons football team to assist you with taking them to the doctor, and then continuing to assist you with medication administration, you are blessed.

If you have any kind of emotional and/or physical support, you are very blessed.

And my personal favorite that I feel everybody takes for granted… If you are able to take a shower whenever you want, you are blessed!!!

By the way, I’m sure some of you are thinking, ‘If you can’t even shower, how do you have time to write all this?’ Well, since Keegan is sick, we are laying on the bed chillin in our pajamas (not sleeping yet). I can’t take a shower because I can’t take my eyes off of him. But right now I don’t have to….

Quarantining Autism

“Just hire a babysitter,” they said. “It’ll be easy,“ they said. The sad thing is that we can afford some help, but finding people to help is the difficult part….or people that we trust….or people willing to get out and work when they should be quarantining. Without going into too much detail, not only because I don’t have details, but because I don’t feel like bawling my eyes out as I type right now…….I have a really bad feeling that one of the babysitters that we recently hired was hurting Keegan in some form or fashion. And because Keegan can’t verbalize anything, all he can do is look me in the eyes, tears streaming down his face, while his finger nails dig into my skin, with an intermittent hard as hell head bang, to try and tell me he doesn’t like her. I have no proof, or no evidence to suggest this girl was hurting my sweet boy (which is probably good, since I would likely be in jail), but the look on his face the last two times she dropped him off was enough to stop using her services. And if only Keegan could go to his summer camp, I wouldn’t have to worry about my child being abused.

Since that girl obviously didn’t work out, I hired someone else, and decided on a “manny”. Last Monday, I received a phone call while Keegan and his manny were at the park. I usually communicate via text with all the sitters, so when I saw the manny’s name on the caller ID, I knew it was bad. I could hear Keegan crying when I answered the phone, so I knew it wasn’t good, but I knew he was alive. After I said “Hello”, I heard the words that only nightmares are made of…..

“I have bad news, we just got into a bad car accident.”

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!

There’s Nothing Funny about Laughing Gas and Autism

Yesterday was the day that I have been dreading for quite some time now………it was the first time putting my severely autistic son under anesthesia for some dental work, a blood draw, and MRI. And it was just as bad as I imagined, but also much better than anticipated.

We didn’t necessarily need the MRI or blood, but figured lets kill as many autism challenges with one stone as we can, and as much sugar as Keegan consumes on a daily basis, we knew the dental work was necessary. We had attempted a dental check-up once and only once. It lasted about 5 seconds and sill required 4 employees to hold my son down while the dentist quickly looked in his mouth, making it obvious to everyone that nothing was going to happen in this child’s mouth while he was awake.

To make matters even more stressful, this hospital procedure had already been cancelled and rescheduled twice. The first time, the dental office changed the date of the appointment and never called to let me know. Luckily I called to ask a question, at which time they were like, “Oh, we didn’t call you? We moved it a week ahead”. As if that wasn’t enough, the dental office called me the week of the procedure and said it had to be rescheduled because they had scheduled the procedure at the wrong hospital. And since I tend to be one of those superstitious types, I was worried that all of these mishaps were a bad sign, that all this negative juju was the universe saying he shouldn’t have the procedure done. But……we did it anyway.

My biggest concern initially was how we were going to survive 2 hours in a hospital room without any food, drink, candy, or popsicles the entire time. Most parents, even other autism parents, can just throw an iPad in the kids lap, turn on some YouTube videos, and survive an hour or so. Well, not with Keegan. I would cut off my right arm if it meant that Keegan would want to play with an iPad…….that he would enjoy watching things and doing activities on an iPad (probably not my right arm, but maybe my left). This would make every adventure outside of the house a little more tolerable. But Keegan only likes to dribble balls and eat popsicles. And one of those he couldn’t do while waiting, and the other was only questionably possible in a small room.

My anxiety started building the week before the procedure. Around that time, I received a call from a woman at the hospital saying she was a “child life specialist”, and wanted to talk to me about Keegan, and ways to make the experience better for him. Initially, my skeptical autism mom hat was on, and I thought, ‘what the hell is a child life specialist, and what do you know about autism?’ We had already experienced many disappointments in the healthcare industry regarding knowledge, understanding, and acceptance of autism, so I knew this time was no different. When Keegan was 2, we had to tell our pediatrician that he was autistic, and she continued to deny it until we brought her the diagnosis from the autism center. We had also run into clueless doctors and nurses at his past ER visits, like those who didn’t even know what a “stim” was, or that most autistics have sleep disorders. I’m not saying everybody has to know everything about autism, but I believe you should have a very solid base of autism knowledge if you are going to work with them, which is why I am so adamant about teaching others the basics of autism, and why I recently obtained my Autism Specialist Certificate.

Anyway, when this Child Life Specialist called me, she impressed me. Not because she knew a lot about autism, but because she wanted to know a lot about autism. She asked many questions about Keegan’s likes and dislikes, fears, and challenges. She explained that Keegan would have a “coping plan”, which is basically the politically correct way of saying he would be treated like VIP. They were recognizing that children with special needs not only need special services, but they wanted to know each individual’s needs in detail. It was so amazing to hear how much awareness has clearly been created over the last few years, but also acceptance and the need for special accommodations. I wasn’t sure how much she was actually listening to all of my Keegan-babbling on the phone until the day of the procedure, when she came into the room to introduce herself and brought in 2 little balls for Keegan to play with. I knew right then and there that ‘times they are a-changin.’ Finally!

The waiting before the procedure ended up being the easiest part of the day. He didn’t seem to care that he couldn’t eat or drink anything, and I was grateful for that. He was content with his balls that the lady brought, while periodically watching his DVD player. The hard part was after, when they brought him back from recovery. I already warned them in the ‘coping plan’ that he would rip out the IV……for that I was certain. I had forgotten about the pulse ox that would be taped tightly around his finger, and the leads for the EKG taped all over his body.

His sad little whimper when they brought him in the room broke my tiny heart. He had covered himself with his blanket so he couldn’t see anyone or anything, and was quietly crying. It was then that I realized how sad he must have been when he woke up to all of those unfamiliar faces, all the while feeling like shit. When he began to wake up more I tried to comfort him, but since he had no idea what was going on and couldn’t verbalize his pain and discomfort, he cried harder and harder every minute. I could only imagine how hard a scenario like that is for a non-verbal autistic child, who also never pointed at pain areas or was never able to indicate where the problem was. I had to tap into my ‘autism mind-reading’ skills’, which by this point I had slowly improved over the last eight and a half years of limited communication, and I told the nurses to rip everything off his body so at least his sensory issues would decrease. At which point, he did slowly calm down and stop crying.

Keegan didn’t want to eat anything when we got home, so I was excited when he later got the ice cream out of the freezer and handed it to me. I opened it and gave him a spoon, and he went to town on that birthday cake. I was just happy he was eating something. After a few quick bites, he looked at me and started crying. It was the type of cry that I knew very well was going to turn into much more. As he cried louder and harder, he started head banging on the counter. I immediately picked him up so he wouldn’t hurt himself, and he continued to fiercely head bang my shoulder while scratching my back in anger. This was one of those times that non-verbal really sucks. I had no idea what triggered him, but I’m guessing either a brain freeze, tooth pain (since he did get 2 cavities filled while under), or it just wasn’t the ice cream he wanted. Either way, he is not able to tell me, and all I can do is hold him until he calms down.

Keegan was back to baseline this morning, so I sent him to school. About an hour after drop off, I get these pics of his chest and stomach from his teacher………………………..

For a second, I panicked. Luckily, its just an allergy or reaction from the adhesives on the leads. Looks like another allergy he inherited from mom, unfortunately.

It wasn’t until I got out of the shower today that I noticed the damage from last night. The first pic is the bruising on my left shoulder from the head banging, and the second is the nail scratches and bruising on my back.

Are these bad bruises and horrible scratches? Absolutely not! Do they hurt? A little, but the pain in his eyes while he was struggling to find the words, or how to express what was bothering him far exceeds any physical pain I could ever feel. I’m not showing you these or telling you this for sympathy or attention, it’s just part of my crusade to help educate everything about autism, even the bad sides. And maybe when you have the urge to say, “Oh, what do you mean….hospital visits are hard on all kids”, you will know why I’m rolling my eyes. Of course they are hard on all kids…………..hell, they are hard on me. I can remember how horrible I felt after every one of my surgeries. But trust me……….everything hospital related is a little different and slightly worse with autism.

Keegan had a hard time going to sleep last night. I thought it was possibly because he was worried he would wake up in a hospital again, or maybe his teeth hurt. But, he can’t tell me why, and that sucks. Tonight I am content in the fact that he is snoring away in his bed, hopefully dreaming only happy thoughts.

Celebrating Labor Day the Autism Way

GOD…..it has been ages since you heard from me. And I just realized why its been a while.

Today is Labor Day, and I am reminded of how much I hate holidays. Which then made me want to blog about it. Which then made me realize I haven’t done so in a very long time. Which then made me figure out why.

I guess I tend to blog when things are kinda shitty. Its cathartic, so it usually makes me feel a tad bit better after getting it off my chest (or through my fingers, in this case). I had a ‘hater’ once tell me how negative my posts were, to which I responded that she didn’t have to read it. But lucky for me, some people do read it and actually want to hear about the struggling side of autism. So here it is!

Holidays are hard for many autism families, and especially our household. My husband has to work 9.5 holidays out of 10, due to the 24/7 healthcare field. And I am stuck with autism all day, usually in the house, because we haven’t been invited to a Labor Day party in YEARS! However, even if we were invited, the likelihood of actually going is slim to none. So I guess I should be happy I don’t have to turn someone’s invite down, only to leave them clueless as to why it’s THAT hard to bring Keegan to their house.

Why is it that hard, you ask? Here’s why……..

To begin with, no matter what you have planned for the menu, I can guarantee you that Keegan will not eat one bite of it. It’s not because you are a shitty cook…..believe me. To make you feel better, he rarely eats anything I cook, unless its Tyson Chicken Fries (but they have to be Tyson and they have to be the fries, not nuggets, or he won’t eat them), or the Birds Eye parmesan and spinach pasta (but it can’t be the one with the chicken or he will gag, and possibly puke just by looking at it), or the Applegate organic beef hot dogs (but it can’t be Oscar Mayer or the Applegate chicken hot dogs, because when he sees that they are not the right color, he will throw it on the ground), or Sea Pack clam strips (but they have to be cut into the perfect size and served on the blue plate, not the red, because he only eats chicken on the red) . In which case, this will all make you think he is being a picky, spoiled little brat. But you couldn’t be further from the truth…..he is being autistic. Therefore, the fact that you went out and bought a huge bag of goldfish just for Keegan is extremely sweet of you, but because you didn’t get the “extra cheddar” ones, he might have a meltdown. And then I will feel bad that you went out of your way to do something sweet for Keegan, and it backfired. And I will have to explain to all the onlookers that no, Keegan is not scared of goldfish, just the ones that aren’t extra cheddar. Haha!

And that’s just some of the food part.

The other issue is me getting the opportunity to actually eat what you cooked. I will be so busy following Keegan’s every single step that it’s impossible to hold a plate, a drink, and a fork, and have enough hands to grab Keegan when he tries to climb your fence. And lets hope you actually have a fence, because if you don’t, my husband and I will probably not hear one word you say, let alone eat your food. We will be too busy chasing him around the yard because he doesn’t understand safety concerns, and doesn’t get why you can’t chase the ball out into the street, or jump in the neighbors pool.

And that’s just the outside.

If you have any of the festivities inside your house, forget it. There will be no breakable objects left unbroken. Especially anything that resembles a ball. Keegan thinks that everything bounces, and will do anything he can to test that theory. Even climb your armoire where the snow globe sits, which will no longer be in the shape of a globe if Keegan gets ahold of it. And the armoire may not have handles or functioning drawers anymore either.

And then there’s the pica. Many autistic kids have this disorder. For those who don’t know, pica is defined as “craving and chewing substances that have no nutritional value”. What does this include, you ask? In Keegan’s case, everything that isn’t food. So when Keegan is not testing the “bounceable” objects, he will be putting them in his mouth. In fact, I just read an article yesterday about an autistic child who would break lightbulbs so that he could eat the glass. That should give you a little idea of how unsafe pica can be, and why it’s impossible to not follow Keegan like a hawk.

And to top off the “reasons why we can’t come to your house for Labor Day”………the stimming! This could be anything from the wondrous noise of Keegan’s high pitched excited scream, or the incessant punching himself in the head as hard as he can, or the combination of both. You can tell me all day long how much that would’t bother you or anyone at the party, but you may change your mind after hearing and watching it for an hour.

I guess another reason why I felt the need to write this blog is because of something a co-worker asked me yesterday. She heard me whining about my husbands’ text telling me that Keegan had a second pee accident of the day and it wasn’t even noon. She then asked me, “Do you think he pees himself because he knows it makes you mad?” Now I know that this particular person means well, and may not have the best social skills on the planet, but I also know that was just ignorance talking. That particular question told me how hard it must be for people who live in an autism-free home to completely understand, the good and the bad. I fought the urge to sit with her for the next hour and tell her that Keegan is the least manipulative child there is. That, in fact, he cries sometimes when he has an accident and senses our frustration (even if we try to hide it), because he knows he did wrong and he feels terrible about it. I wanted to tell her that yes, you do hear me bitching about the struggles, but there are so many rewards. And that Keegan has the most precious soul of anyone I have ever met.

When my patients complain to me about how their spouse or other family member “doesn’t understand” their addiction, or thinks they should just “snap out” of their depression, I always remind them that nobody will ever completely understand your particular struggle. And that’s OK. All we can do is try our best to explain. I know that even those with autistic children as well will never know what it’s like in my household, nor will I ever know what it’s like in theirs. We can try to educate as best we can to avoid judgement, and hopefully increase some understanding and awareness of the struggles we all endure.

As I always say……I’m not telling you all of this for pity. If you want to feel sorry for me, that’s on you. But you shouldn’t. Yes, everything I said is true. Some a little exaggerated, and some with hopefully obvious humor. But it really is this hard, and that’s OK because Keegan is worth all of it.

Presuming Competence in Autism

“Don’t worry, he will get better”

“Don’t worry–he will be fine”

If I had a quarter for every person who has told me this in regards to my son, I would be a very rich woman.

My 6-year-old is severely autistic. I knew of his diagnosis even before the pediatrician did. “Don’t worry–he’s just on ‘Keegan time’.” That was the one his pediatrician used to say every time I brought up a concern about his developmental delays.

I have always had the best therapists for my son, since he was a little over 2 years old. At least, what I consider the best. Ones who would tell me his potential, and tell me that he will be a very productive member of society when he gets older, and that he will get better. They would constantly tell me how smart he was. Is this a bad thing to be told? Not really, but what happens is that you sit and wait…..and wait….and wait….until you realize you have been waiting for 4 years and have not seen close to the progress that you were told you would see.

I have been lucky to have these very loving therapists and teachers for my son, and I guess I took that for granted a little. They would tell me things like, “He told me he wanted (fill in the blank)”, or “he said ____”. They seemed to understand my non-verbal son better than I did. A lot of the time I would just nod my head and smile, knowing he didn’t really say that, but thought it was sweet that they felt like they were getting through to him.

Then I put him in public school and the tables turned a bit. Sure, the teachers loved him because he’s hard not to love. He’s just so sweet and cute that you can’t seem to get enough of him (yes, I’m biased). But, they also recognized how hard it was to teach him, and made it very clear to me how hard it was in a big way. Hard to teach because he lacks motivation for most things, making it difficult to work towards a goal using a reward system. He also has constant stimming behaviors, which has negatively impacted his learning, in my opinion, for the last 3 years.

I was recently told by the current school that Keegan was not appropriate for the class, and that they wanted to transfer him to another class/school. Their argument was that it took too much time away from the other students to constantly redirect Keegan (keep in mind there is only 3 other kids in the class, along with a teacher AND an aide). They also told me that they felt they weren’t doing the appropriate job for Keegan because while teaching a lesson, Keegan would be stimming quietly in the corner away from the class. And in no uncertain terms they also told me that he is basically not capable of progress, and that he appears unable to understand anything that is told to him.

What they didn’t realize, and I guess I didn’t either, is that he is listening and understanding. It took someone not believing in my son for the first time for me to truly believe in him for the first time. I mean, I always believed in my son and what he was capable of, but after 4 years of silence and incorrect responses, you start to wonder if he is actually that cognitively disabled. For instance, he points to the ladder when he is asked to point to the swing. He points to the red circle when he is asked to point to the blue square. I know that he actually knows what a blue square is because he has shown me and said exactly what a blue square was when he was much higher functioning, before his deep regression into autism-land. But since his regression started, and the correct responses began to dissipate, “incorrect” was his normal, and I got into a routine of the inability to think outside of the box. The inability to believe there is more going on in that little brain of his than he is able to communicate.

I understand that the public school has a job to do, and that they can only go off of the actual data, and how he directly responds to questions. But I feel that he does know, but the autism blocks him from responding appropriately.

And there I was two months ago in his IEP meeting trying my best to argue why I wanted him to stay in his class of low ratio, and avoid an upheaval of emotions from my son in the transfer to another school. I was actually fighting to keep him in a class that he was not wanted. A class whose teacher told me point-blank that she does not feel she can teach my son. She feels he would be better off in the 10/3 ratio (kids/adults) classroom where they will focus on one letter or one color nonstop everyday. And bonus…….there’s a kid in the projected class who bites.

After ‘losing’ in the IEP meeting, I came home feeling very defeated. I realized how hard it really was to advocate for someone who didn’t have a voice. Then out of nowhere I got a phone call that I had actually been waiting almost two years for. A call from a private school that I REALLY wanted Keegan to get into, but are very selective in who they chose. They wanted Keegan to come in and do some trial days to see if he blended with a class that had an opening. One of the first things that the director told me on the phone was that they “presume competence”. I knew what this meant, but I didn’t know to what extent this would apply to Keegan.

I knew on his first trial-day that this was where I wanted Keegan, and I could see the presumption of competence in full effect. When they brought him to the car they couldn’t stop talking about how smart he was. They gave me more feedback and papers on the things he did that day than I had ever received in the 5 months he was at public school. I got the contract in the mail yesterday that he was accepted and will be starting at this school next month.

I will leave you with some helpful feedback on presuming competence, taken from Emma’s Hope Book blog:

“Assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand. Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization. To presume incompetence is to actively do damage.”

If only everyone would do this………

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.