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.”

What NOT to Say to an Autism Parent

Someone asked me a question about autism the other day that hit a nerve. They didn’t mean to, and it wasn’t a bad question, but it made me a little angry.

Don’t get me wrong, I am happy people are interested enough to ask questions and to try to understand my son (and autism in general) a little better, but sometimes people say things that really piss me off. So, I decided to write a few things down to help those who are on the outside understand where we on the inside are coming from.

First of all, just because you might piss me off, don’t ever hesitate to ask a question about autism. As my mom always told me, no question is a stupid question, except for the ones you don’t ask. So, with that being said………………………………..

1. If I am whining or complaining about something my son does, or an autistic trait that is difficult to deal with, don’t ever, and I repeat EVER, say anything like “Yeah, it’s the same with all kids”, or “that was hard when my son was that age, too”, or “that’s not just with autistic kids, that’s with all kids.” (you get the idea) Now, why is this a bad thing to say? Well, I had to think long and hard one day as to why this bothered me so much because when people say this, it is true. Normal kids do things that drive their parents and others crazy too, so why can’t people try to relate? Well, the main reason is because this is only one tiny portion of the struggles we have to deal with on a minute-by-minute basis. So, while a normal kid might do the same thing and drive their parents crazy for that brief minute, the next minute my autistic son will need help drinking from a cup, or will cover his ears and scream because the ticking clock is way too loud, which your child will probably not be struggling with at his age. My point is that yeah, all kids do annoying things, but it is usually in many more instances, and is exaggerated (or to a much higher degree) to an autistic child.

I will give an example of this…………..One day my husband was upset at how disastrous my son’s haircut went. My son screamed and cried like we had never heard before. While my husband was venting his stress on Facebook, so many people responded with things like “yeah, my son was that way” (this is a neurotypical child they are talking about) and they probably were telling the truth. But what they don’t understand is that some autistic children have very sensitive systems and getting a hair cut may feel like cutting their fingers off to them. Not in the pain sense, but in the sensory overload sense. They may think you are cutting off their ears and don’t understand what you are actually doing. The sound of the scissors cutting the hair may sound to them like a hammer pounding very loudly right in their ear. Their senses are completely different than ours, so therefore, there is no comparison.

2. It is sometimes annoying to hear someone ask “Why is that?” when I am explaining my sons horrible sleep patterns, or his significant regression over time. Or when they ask “what does his therapist say about that?” Why is this annoying? Because there is only one answer and you already know it………….Because he’s autistic. We could get into the specific logistics or the neurophysics of it all, but at the end of the day, it wouldn’t make sense to any of us, and quite frankly nobody knows for sure. So, the only answer is “Because he’s autistic”…………Because 50-80% of autistic children have sleep disorders…………..Because 30-40% of autistic children regress………….but why? I wish I knew. Because they have autism, that’s why.

3. I love and hate (at the exact same time) when people send me articles or videos about autism. I LOVE that they not only took the time to read or watch, but that they thought about me and my child. I HATE it because I have seen it, probably 3-4 times. I have not only read/watched it, I can almost guarantee I have tried whatever they are saying worked. Or, there is a damn good reason I haven’t tried it.

4. Along with number 3, it’s kind of annoying when people ask me if I have my son in any kind of treatment. Um, no, we just sit around and wait for the autism to go away. All jokes aside, I have him in probably too much therapy, which might be the problem. It is a legitimate question for someone to ask, but I can guarantee there is not an autism parent out there that doesn’t have their child in some kind of therapy, even if it’s just speech for 20 minutes a week in his public school.

5. “Is your child non-verbal?” I only hate this question because my son is neither verbal nor non-verbal. This is a legitimate question and not rude by any means, but I can’t really answer. Yes, my son has words, but he doesn’t talk. Only autism parents get that actual answer.

6. Sometimes when I tell people that my son has autism, their response is, “I’m sorry”. Some autism parents HATE this response. I personally don’t mind it. You should feel sorry for me, and happy that your child is not on the spectrum. Some parents say, “don’t feel sorry for me, I love my child’s autism.” I’m here to say, I don’t! I love my child with all of my being, but I don’t love his autism. I don’t love that he struggles every time he tries to think of that word of the food he wants, and when he doesn’t know it, he screams and cries because he is so frustrated at the difficulty it brings. I hate that my son may never be able to take care of his basic needs, and might need special care his entire life. I also hate that we spent over $137,000 out of pocket for all autism services last year (that was our call, yes, but sad that there is not more insurance coverage or better public school options). So, yeah, feel sorry for me…….all day long.

7. “God doesn’t give you more than you can handle” or “God only gives special kids to special people”. I’m indifferent to both of these. I can say that when my child was first diagnosed, every time someone said something about there being a “reason God placed him in my life”, or I was the “best person for him”, I would cry big, sloppy tears. Good tears, but still gross tears. I believed this, and I knew how strong my love and devotion was to my child. However, I realized quickly that I am not that ‘special’. I do what almost every parent would do given the same situation and that doesn’t make me any better. I also realized quickly that God DOES give you more than you can handle sometimes, but you make do and you get through, or you don’t. Luckily, I have made it through every time……so far.

8. And last but not least (for this blog post anyway), “When he starts talking, it will be much easier”. Yes, this is correct, it will be MUCH easier. But it is not “when”, it is “if.” You can tell me that I am being negative all day long, but I call it realistic. Is it healthy to patiently wait for something that may never happen, or love and appreciate him for the way he is? I’d like to think the latter. Studies suggest that it is likely that he will talk at some point, but there is also TONS of research that show some autistic children never learn to verbally communicate, but may communicate through computers and other means. So, therefore, I don’t think it is healthy to wait for that day, patiently or impatiently. I just love him for who he is now and still provide him with ongoing speech therapy–and hope for the best.

Well, that’s all I got today. I’m sure there are tons more questions and comments that get on my nerves, but I want people to continue talking and asking about autism, so I’ll shut up now.

So Funny I Forgot To Laugh

“God sure does have a sense of humor!” I have heard this phrase many times throughout my life, but only recently began to understand how funny he really can be.

Sometime in my early to mid 30’s, when I was contemplating if I ever wanted to have kids, I remember telling my mom something in a half true/half joking manner. You know, when you are joking but deep down you are a little serious? I said to her “Hey, I have an idea–why don’t you take my firstborn for his/her first few years of life, then I’ll take it from there.” I realized at that moment that I was not ready for that newborn phase, when that little, precious gift was so dependent on you for everything.

I had personally struggled in my early years on finding my own independence, and I had finally achieved it and LOVED it. After a divorce, completing my masters degree, moving to a new city without family, finding a good job all on my own, and getting married to a man who allowed and encouraged me to be strong, my only option was to be happy AND independent. However, I was also a little selfish. Thinking about that possible little ‘bundle of joy’, I couldn’t imagine not being able to sleep in on the weekends, to not be able to watch TV when I wanted, or to go on last minute romantic trips with my hubby. Basically just not being able to do whatever I wanted whenever I wanted. It was not only my selfishness that was pushing me away from having a child, but also the shear dread that this person was going to be dependent on me for EVERYTHING.

I had always viewed dependence in others, especially women, as weakness. This was why it was so important for me to rid myself of my own dependence. I know a child doesn’t have any other option but to be dependent, but this fact was not appealing to me. I remember throughout my life I would cringe when I heard a mom whine about how sad she was that her children were growing up, or how depressed she was going to be when her children moved out of the house and away to college. I would always want to say , “Are you kidding me? I will dance the happy dance when my child moves out of the house.” Then, of course, their response would be, “Oh, you will change your mind when you have kids. You will want them to stay little forever.”

Fast forward to having my one and only child. I was excited to be a mom, but more excited to get past the newborn phase. I would cry almost daily, wondering ‘why is he crying? Is he hungry? Is he tired? Is he in pain? When will he sleep through the night?’ I hated the guessing game. When I complained to my friends and family about this part of raising a child, they would say, “Don’t worry, soon enough he will be able to talk and tell you what is wrong, and next thing you know, he will be getting himself out of bed and making his own breakfast so you can sleep in.”

My son is almost 4 and I’m still waiting. I’m still waiting for him to tell me what is wrong, or what he wants to eat, or if he’s tired. I’m still waiting for him to let me sleep in. I’m even waiting for him to sleep through the night. And I hate it—just like I knew I would. I not only hate it for me, since I am still that selfish, independent woman, but I hate it more for him. I hate that he gets so upset when I don’t understand what he is trying to tell me. I hate that he cries for long periods of time and I have no idea how to help him. I hate that he may never be able to make his own breakfast, let alone not need any assistance to eat his breakfast.

Most days I hate his autism, but I never hate him. He is the only reason I am able to live with my biggest fear being my reality. He makes me see that anything is possible. I do, however, still wonder why those women who never want their children to grow up don’t end up with the children who may never get the chance to. And, the one woman who wanted their baby to leave for college yesterday may never see that day. Even though I am not laughing now, maybe it is just God’s sense of humor. Maybe it’s his way of strengthening those weaknesses within us. I may never get to dance that college happy dance, and I may never get to feel that independence again. But, maybe just maybe, I will get something even better in the end.

If ‘Autism’ Was A Man

If autism was a man, I would kick his ass to the curb!!!!!

I realized this while I was happily dressing my three-year old as he screamed and cried because I woke him up too early. I thought to myself, “if you were anyone else, I would not be smiling or wanting to kiss every inch of you right now”. I guess that was my ‘Aha! moment’, that this is what unconditional love is all about. It’s that feeling that no matter how difficult that person makes your life, he is still worth every heartache.

However, if this was a man, I have to say, I would not be hanging around. Let’s think about a typical day in the life of this “man.”

–You wake him up and he screams and cries for at least 20 minutes. On the flip side, there are more than enough days that he wakes YOU up screaming and crying. Either way you lose. Then, there’s the wake up at 3am and stay awake until 5 or 6, just because he wants to. Every scenario sucks!

–Then you start to make him breakfast. You have to guess what he wants because he isn’t talking to you and he is unable to make breakfast for himself (lazy ass). So you decide on pancakes. You put them in front of him and he throws the plate on the floor while screaming “NOOOO.” Instead of getting upset, you have to figure out what it is that he really wants to eat. You break out the mini muffins, because he actually likes the pre-packaged shit better than the homemade things, which is fine by you—that means less cooking. Maybe he’s not so bad after all. But then you have to worry about whether he is getting enough nutrition, or whether he is getting too much sugar, or that terrible gluten stuff. Oh well, worry about that another day.

–Then you have to pack his lunch for school because, again, he’s a lazy ass. You have to play the guessing game once again, knowing the teacher may tell you he didn’t want anything I packed for him, then YOU are the bad woman. At the same time you are packing the lunch, you have to put on his shoes AND his jacket for him. Heaven forbid he could do it himself. Maybe I am enabling him? I don’t know. These are the type of questions you are constantly asking yourself.

–Then comes the part that you spend most of the day doing………..driving him everywhere he needs to go. You hope one day he gets a driver’s license so you don’t have to keep doing this. He’s only in school for part-time, because he doesn’t have enough experience or eduction to go full-time yet. So, once you pick him up from school, you have to take him to some form of therapy. This is everyday! Every single day. Monday and Tuesday its to speech therapy, because he’s a typical man and can’t communicate. Wednesday and Thursday, it’s to occupational therapy, because he needs all the help he can get in order to hopefully be gainfully employed sometime in the future. Friday it’s to ABA (adaptive behavior analysis) because he needs some behavior modification in order to be a good husband at some point. And Saturday and Sunday, it’s “play therapy” time. This is actual work, but they call it ‘play’ to make him feel better about it. Just like a man–have to use the word ‘play’ to get him to agree to anything.

–Then its home, where you have to keep a solid eye on him at all times. He might ruin the furniture somehow, or decide the plant looks too fabulous not to eat. Or, he might try to unlock and open the door for a quick getaway. Typical of a man, right? You also have to watch what HE wants to watch on TV, and you don’t get a choice. It’s Team Umizoomi or nothing.

–Then comes the dreadful dinner, where it’s a repeat of breakfast, but usually worse because he’s tired and cranky. It’s an almost guarantee the food will end up on the floor again. So, you have to pick the chicken nuggets over the pizza (which is the only 2 foods he eats at night), so the mess is less. You ask him if he wants strawberries or grapes with it and after a few seconds, he mutters a slight “stawby”. You clean and cut the strawberries, only to realize he actually wanted to eat the grapes but felt like saying strawberries, just because it was more fun. Saying one thing and meaning another………..sound familiar, girls?

–And last but not least………bath time. Of course, he can’t get the water temp right himself, and doesn’t know how to soap and rinse, so you have to do it all. And dry, dress, and put him to bed as well. So high maintenance! To top it off, he wants the exact same three books read to him every single night, and without it, a major fight ensues. Always has to get his way, just like a man. Then I go in for the hug and kiss, only to be pushed away and rejected as usual. That part is usually the reverse with a man and woman, but anyway.

So, as you can see, if autism were a man, he would definitely not be in my life. Too high maintenance, inexperienced, negative, and difficult. However, “he” is my whole life, and his name is Keegan. He is autistic and I love him more than life itself. Yes, it’s hard, and sometimes I am just going through the motions. But he makes it a little easier each day. I guess I’ll let him stick around.

(P.S. This post is in no way meant to mock autism, autistic children, or the process. It is simply my way of dealing with a stressful situation in a lighthearted way.)