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.

Darwinism or Autism? The Quest for Survival

You know when you have a newborn baby and the only thing that gets you through the sleepless nights is knowing that one day very soon this torture will be nothing but a fleeting memory?

What if someone told you that the torturous sleep deprivation was never going to end. That this is how it was going to be for the rest of your life. Instead of a memory, it will be your daily reality. What if they also told you that you will sometimes be up in the middle of the night catering to him for 3 or 4 hours straight, unable to go back to sleep for fear of his safety.

What if that person also told you that your baby was going to grow up physically, but that was it. He was not going to grow cognitively or developmentally. You will have to take care of every little detail for that child like he is four weeks old, even when he is four years old, or even 40 years old. And that even when your baby turns 18 and all the other 18 year olds are leaving for college, your baby will never leave the house, unless he is going to a residential facility or a personal care home.

If you had an option, would you still have that baby?

The description is a little dramatic, I know. But, it is my reality.

I recently read an article about a Princeton professor who suggested that severely disabled infants be killed in order to cut health care costs, and also for “moral reasons”. He feels that the “right to life” is based on that persons “capacity for intelligence and to hold life preferences.” He goes on to say that he doesn’t want his “health insurance premiums to be higher so that infants who experience zero quality of life can have expensive treatments.”

I think the initial thought process towards this professor, for most people who have a beating heart, is ‘blasphemy’. It was my first thought, anyway. I have a special needs child who falls into this category of “low capacity for intelligence” and “zero quality of life”. The thought of killing him as an infant is not even a thought that has ever crossed my mind.

A few days after I read this article I started contemplating the actual underlying meaning, and his actual thought process. It hit me during a play date. The depression usually hits hard during play dates because that’s when I REALLY see the difference between my son and every other child. Even those that are far younger than him. And, even those who are also autistic. My friends 1-year-old daughter shook her head ‘no’ in response to a question that her mother asked her. Wow! My 4, almost 5-year-old, has never shook his head no.

Another ‘slap in the face–your son is way too low functioning’ moment came this morning. My husband and I went on a tour of an autism school that sounded perfect for our son. After talking a little bit about our son and his abilities (or lack thereof), the director pretty much told us in so many words that our son was probably not appropriate for the school, based on his limited functioning and abilities. OK, so if he can’t even go to an autism school, what are his other options? If you won’t even take our $30,000, who will?

So this got me thinking about Charles Darwin, and his idea of “survival of the fittest”. It also got me thinking about this professor who feels we should just eliminate these ‘problem’ children from the beginning. All of a sudden, I actually understood where he was coming from.

As I couldn’t imagine my life without my precious baby, I also can’t imagine how his life is going to be when he is at the age where he is required to take care of himself. My husband and I have sleepless nights (besides the fact that our son keeps us awake) worrying about his future. I know it’s not good to live in the future, but us special needs parents don’t have a choice. Not only are our days filled with worrying about the present, and sometimes just getting through the day is difficult enough, but we have to constantly think about what parameters have to be put into place to help him navigate his world in the future, or heaven forbid, live without us. And because our son has had little to no improvement, along with significant regression, over the past 2 years, we definitely have to consider this.

I think when people initially hear what this professor says, we think he is being selfish and shallow, only focusing on the strong and able. If I may play devils advocate, is it selfish to keep a baby based on our religious values or desires to have a baby, regardless of how difficult that child’s life will be? To not only torture the child through these impossible obstacles, but also torture the parents watching it? My son cries everyday, sometimes numerous times a day, and because of his limited communication, I usually cannot ease his pain. This is very difficult when it is someone you love more than anyone else in the world. I think that’s sort of what this professor is saying. The burden on the parents, children, hospitals and financial/insurance companies combined doesn’t have to be an issue if “it” (as he calls the child in question) is just eliminated from the beginning. However, very few people could fathom killing their precious gift from God, including myself.

The reason I blog about the depressing things in my autism life is not for others to feel sorry for me (but if you want to, you are more than welcome), but more for empathy. Everyone wants others to put themselves in their shoes at times so they understand their struggle, and where they are coming from. And like I always say, now you know why I’m such a bitch and never want to talk to you. (Just kidding…..sort of). I also disclose my innermost feelings to help with autism awareness. People know it must be hard, but they don’t really know why and how it’s hard. They think, ‘oh it’s got to be hard that he doesn’t talk, and can’t play with others, and has meltdowns,’ but there is so much more than that.

I get a little frustrated when some autism advocates say how important it is to appreciate who your child is first, instead of pushing therapies and worrying what society may think about them. As much as I 100% agree, I also have my child in therapy 8 hours a day so that he can learn to drink out of a cup, be potty trained at some point in the near future, draw a straight line, know how to take turns, be able to sit at a table for more than 2 seconds, know the difference between yes and no and how to shake your head accordingly, know how to open a door and open a bag of chips, etc, etc. This is not just about having him look normal to society, but more about him being able to hopefully live independently when he is older. And, to hope that when these professors pushing to kill newborns become more frequent, our weakest links (AKA, the loves of our lives) won’t be eliminated.

A Day in the Life……of an Autism Mom

As I sit inside the oxygen chamber with my son, holding his head up with one hand while he sleeps and holding the oxygen mask over his face with the other hand, I realize this is not what those “normal” parents are doing today, I’m sure of it.

This is just another day in the life of an autism mom!

It’s a lovely Saturday afternoon and I’m jealous that most families are at the park running around, or at a friends house enjoying a barbecue. I, however, am sitting for an hour and fifteen minutes in a very uncomfortable position inside a tiny tunnel, thinking about when my next free minute will be to schedule a chiropractor appointment. We are trying out another autism “treatment’–hyperbaric oxygen therapy (HBOT). I was so glad Keegan fell asleep this time, since I had been unsuccessful getting the oxygen mask on him the 4 previous attempts. I mean, what autistic child with sensory issues would wear an oxygen mask for an hour? Hell, what neurotypical child would? As I hold the mask over his face, I am envisioning him waking up and saying “Hi, mommy”. Something I have never heard him say, and he’s almost 4. I then think about being able to go on a play date like those “normal” moms with “normal” kids. Something I have not been able to successfully and/or joyfully do in the last year. The chamber is said to help increase speech and social skills……2 things Keegan is completely void of.

This hyperbaric oxygen chamber is just one of MANY treatments we have tried in the past year and a half. We have tried everything from chiropractors, diets, supplements and injections, medications, psychiatrists, developmental pediatricians, occupational therapists, speech therapists, the iLS system (music listening system), aromatherapy, floor-time therapy, and Son-rise therapy, just to name a few things. Unfortunately, there is no “cure” for autism yet, but there sure are a lot of expensive theories and ideas that “might” help.

When people ask me what I do all day being primarily a stay at home mom, I can’t help but laugh. I have a “real” job that I work very little hours a month, mainly just to keep employed and sane. But the rest of my time is spent being that “warrior mom”. Most of it is just “typical” mom stuff that any mom would do. But everything is just sort of exaggerated.

First off, I probably didn’t get much sleep because Keegan was likely awake sometime between 3 and 6 AM, and awake for at least an hour and a half. Plus, it took him about 1 hour to even get to sleep initially that night. This is because, unfortunately, “40-80% of autistic children have sleep problems”. So, I start the day tired. After waking a cranky Keegan, I have to give him a somewhat special breakfast because of his “autism diet”, and spend a good amount of time measuring the many supplements that I put into his juice twice a day. Then, when he is in school (for only 3 hrs, mind you), I have to run around and do all the regular “mom” stuff, such as laundry, dishes, grocery shopping, cleaning….blah blah blah. . Also, I try to get an occasional workout and/or shower in there. I know some moms, except for single moms, have their hubbys to help out with some of these daily tasks, but my hubby can’t–he is helping in a different way. He is bringing home the proverbial bacon so I can fry it up in the proverbial pan……the autism pan (see numerous treatments listed above to get an idea of how much bacon we are talking about). He works every day, including most weekends, sometimes 12-13 hour days. So, because I have no family locally, and because I don’t have the heart to bribe my friends to help out, I am left to do it all alone. And did I mention alone? This is all day, everyday. Sure, I’m with my chid, but remember…my child doesn’t speak or understand anything I say (well, I’m told he understands, but just can’t show that he does). It gets really old talking to myself all day.

Anyway, when I pick him up from school, we go straight to a therapy session or 2, then swing by the HBOT place for another treatment (BTW–did I mention he’s supposed to do 40 hyperbaric treatments, 1 hr each, as close together as possible!). Then, when we get home from all of that, its down time. So, you might think this means I get to relax at this time. Yes, to a certain degree. However, with a neurotypical child you can walk off and do your own thing, for the most part. Trust me when I tell you that you usually can’t with an autistic child, at least not with mine. All the “normal” moms are like, “just tell him what not to do and go do your thing”. Lol! Remember, he doesn’t really understand a thing you say (or present as such) so you literally have to watch him as you would a small child. He has poor balance (thanks, autism), so there are always falls. He has this new oral issue (thanks again, autism) and EVERYTHING goes in his mouth. He is considered to be at the 18 month level in certain aspects and areas, so the watchful eye is always needed. He doesn’t understand safety concerns like one of those “normal” children (thanks once again, autism), so jumping face first off of the couch is completely normal for him. And since I’m usually not in the mood to go to the ER, I have to watch him every second. And, at dinner I have to cut up his food in small bites, and sometimes help him with the spoon (there’s autism blessing us again with poor motor skills).

And forget running errands with him. Target or the grocery store is usually the place he decides he wants something that I don’t have, and let’s me and the whole store know it. Yes, I know, all “normal” kids act up in Target too, but it’s a little different when you can’t at least try to reason with him. He doesn’t understand the “if-then” process (thanks one more time, autism), so saying “if you are good, then you will get a lollipop” does not work with an autistic child. At least not with mine.

All moms have it hard, autism ones or not. And, not all autistic children have these same problem areas. I’m just trying to share a few of the differences in my particular life as part of my autism awareness “campaign” (trust me–there are more). I know it sounds like I’m whining and complaining, and yeah, I kinda am. It’s hard. Really hard! But, I do know it could be harder. And, there are actually some positives with the autism process, which I hope to discuss later. People always say, “I don’t know how you do it.” Honestly, sometimes I’m not sure either, but I guess you do what you gotta do when there’s no other choice. Autism is a journey full of ups and downs. The one big ‘up’ is that my son is teaching me how to be a better mom and person.

Autismly Inspired

Its been a while since my last blog post so I thought I would try to break my ‘blog block’. I also just realized that I recently passed my 1 year blogiversary so ‘yay me’. And finally, with Autism Awareness Month this month, I’m going to be posting whether I have anything to say or not—–just wanting to spread awareness.

The only thing that has been running through my mind lately is this concept of “inspiration”. I have been hearing how inspirational I am ever since my son was first diagnosed with autism, and I began opening up about my struggles. Friends from my past and present would send me private messages, or comment on my Facebook, telling me how strong I am and how inspirational I can be. At first, I thrived on these kind of comments and support. In fact, they probably kept me from becoming postal. I would usually cry reading them, and read them over and over again. Especially the ones about, “God doesn’t give you more than you can handle”. Or, “If anyone can do this, you can.” And my personal favorite, “God only gives special kids to special people.” At the time, these supportive words helped, and I felt like I needed that kind of reminder everyday. It was the fuel that kept me going.

Until one day I realized………………God does give you more than you can handle. And if God only gives autistic kids to special people, then I don’t want to be special. I want to be that non special person with a neurotypical child. What if I am not that strong person that everyone says I am? Everybody has so much faith in me, but I’m not sure I have the faith in myself anymore.

I remember that day of realization very clearly. It was after a hellacious night of no sleep, thanks to autism. My son was refusing to eat—ANYTHING (thanks again to autism). At that time, he also had another regression phase where he stopped talking almost completely, and would stim all day everyday, jumping up and down refusing to respond to anything. He would just stand at our large living room window and stare outside for hours. After 2 years of daily therapy, spending more than $200,000 out-of-pocket to try every “treatment” out there with little to no improvement, I wasn’t sure how much more a person could take. I began banging my head against the wall, literally. I felt so extremely helpless. Not suicidal, but definitely hopeless. After banging my head repeatedly on my bedroom wall, I collapsed on the floor, sobbing until I fell asleep.

When I woke up I began asking myself, ‘Is it inspirational to bang my head against a wall? Is it inspirational to feel utterly defeated, and to wish I didn’t have to be an autism mom? Is it inspirational to wish I had any other life than the life that I had been given? If God doesn’t give you more than you can handle, then why is he allowing these impossible obstacles that make you hurt so much you want to crawl in a hole forever and hide from the world?’

The word ‘inspirational’ to me is that woman who’s son is severely disabled from a tree falling on his head here in Georgia. That woman amazes me. She is so freakin positive, and is always helping out others. There’s a reason she has more than 1 million likes on her FB page. And then there is that guy on Dancing With The Stars that lost both his arm and his leg. The guy only has one arm and one leg and he is dancing!! WHAT!!!!!! Now THAT shit is inspirational. He was fighting for our country, got blown up, and has a smile that could light up an entire room. AND HE’S DANCING.

And then there’s me……….People are telling me I’m inspirational, why? Because I haven’t killed myself yet? Because if they were in the same situation they couldn’t handle it? Well, if you told me 3 years ago what my next 3 years were actually going to entail, and that I was still going to be alive and able to talk about it, I would probably call myself inspirational too. I would have never guessed that I could be this strong.

I guess I can classify myself into that ‘inspirational’ category because I was given a situation that most people don’t want, expect, or prepare for, and I make the best of it. (Try to on most days, anyway). Sometimes inspiration simply means accepting that you cannot control much of what happens around you, even when you are scared. I still have those days that I want to crawl in a hole and never come out, but I do come out, because what is the alternative? We always have choices, but the choice to give up on life, my son, or myself is not an option for me. And that, I guess, is what makes me inspirational after all.

What Every Autism Mom Wants for Christmas

It’s 6:30 AM Christmas morning and I have been awake for over three hours. No, I’m not waiting for Santa, or busy wrapping gifts. I am lying in bed wishing I was busy wrapping gifts, or that I had a reason to be excited for Christmas.

Holidays are not usually the best of times in an autism home. The break in routine, the lack of therapy, and the family visits can be a bit challenging. And in our case, add the sharing of pink eye throughout the house to make the holiday just a bit more cozy.

My 4-year-old autistic son, who struggles with sleep issues, is snoring away, of course. I’m sitting here thinking about how I was when I was his age on Christmas morning. I couldn’t sleep because I wanted to hear Santa on the roof, and I wanted to catch him in the act coming down our chimney. I remember leaving cookies and milk so he could be refreshed. I couldn’t wait to go into our living room and see the couch full of wrapped gifts–everything I wanted.
I also remember Christmas morning 4 years ago. I was holding my baby in my arms and I couldn’t wait till he was a little older and he could have those excited feelings too, and we could lavish him with everything he wanted.

Well, that day is here, and it is nothing like that. My son didn’t ask for anything for Christmas because he can’t talk. What’s worse, he has no idea it is even Christmas. He could absolutely care less that he has 10 wrapped gifts waiting to be opened. And to top it off, he won’t even open them. He would be much happier playing with the paper they are wrapped in–throwing it around in the air, or putting it in his mouth and chewing on it. The only thing that will make him happy this Christmas day is the popsicle stash in the freezer.

Facebook and Twitter has not helped the “Holly Jolly Christmas” spirit this week. It’s just a big fat reminder of how different my world is from everyone else’s. All of the birthday and christmas parties we were never invited to……..all of the school concerts that my child will never sing in…….the christmas trees that we will never have up because my son will tear it down or eat the ornaments…….the family portraits that we will never have because my child can’t sit long or look at the camera…….the christmas feasts my child will never eat………the messages from friends asking me what Keegan wants for Christmas when I just wish they would understand that as sweet as they are, Keegan is not able to wish for anything……..I really could go on and on, but then someone might 1013 me for a psychiatric evaluation.

When I took Keegan to the doctor the other day for his pink eye, the doctor was asking me questions as though I was just starting on this journey. “Is he getting floor-time therapy? Have you read the article about the autistic boy and Siri? Is he getting assistance in school?” And, of course, the answer was “yes” to everything. Then he said, “You just have to find that key to open him up.” I told him, “we have been looking for that key, and trying every spare key we could find for over 2 years. I know he is so delayed and so hidden in his autistic world, but it is not for lack of trying, Dr.”

I realize there’s only one thing I want this Christmas, and that’s why I have been tossing and turning since 3:00 AM. I wish Santa would slide down my chimney and bring me that key.

The Lone Surviving Autism Mom

Sitting in my living room, I can hear Keegan screaming and crying downstairs. I can’t do anything about it because he is with his ABA therapist, and I know what they are doing. I know she is making him sit at a table for a certain period of time, when all he wants to do is stand up and stim, jump up and down, or dive into his swing. I know she is holding his little legs down in the chair so he can’t get up. I know they are not physically hurting him, but I still cry. I cry because of everything we put that poor child through on a daily basis to hopefully make him “better”. And he’s not getting better.

I think that the tears and the ‘woe is me’ attitude is in full effect today because of a dream I had last night. You know how sometimes a good or bad dream can influence your mood all day long. I dreamt, for a very short dream, that I woke up and everything around me was in shambles. Just like in the movies when everybody is dead and there are only torn down buildings and dirt, and the lone survivor is walking around wondering where everybody is, and why everyone is dead. I quickly woke up with my heart beating fast, wondering why the hell I was dreaming THAT, and why I was the one who had to be the lone survivor. Then, as I was getting Keegan’s breakfast ready, I realized maybe I had that dream because deep down that is exactly how I feel. Just like a lone survivor……….Alone. Sad. Frustrated. Confused. Chaotic. Beaten. Nobody there to talk to, or to understand me. Nobody who relates to me.

This is the life of autism.

After dropping Keegan off at school earlier this morning, and not getting a “good-bye, mommy” as usual, I decided to go to a nearby consignment sale for kids. As I was rummaging through clothes, I heard a familiar voice nearby. It was an old friend who I had lost touch with over the last 4 years. She had a son who was born the exact same week as Keegan, so we bonded during our pregnancies. We promised to keep in touch after the boys were born and after they moved, but you know how that goes. I was getting ready to walk over to her and say “hi”, and to rekindle the friendship, but I stopped. I decided not to say anything because I didn’t want to hear how great her son was doing, and how wonderful her life was. But more than that, I didn’t want her to feel sorry for me when I told her how poorly Keegan was doing and how much we struggle on a daily basis. I’m not one who can lie and say “I’m fine”, when everything is not fine.

As I am trying to avoid running into her, I start to wonder why this part is so hard. What would be so bad if we talked, and then hung out with the kids sometime? Well, simply because kids don’t want to hang out with Keegan, and I don’t blame them. And, most adults don’t want to hear me whining, and I don’t blame them either. It’s not that Keegan is annoying or mean, he just doesn’t like to play with anyone. He is literally in his own world all the time, and doesn’t allow anyone in most of the time. So, this is why I chose not to say hi.

I was recently at a play date (if that’s what you want to call it since Keegan doesn’t reciprocate the play), and I overheard the child tell their mom that they didn’t want Keegan to come over anymore. Thankfully he wouldn’t even understand if it was told to him, or if he heard, but it hurt. Now, I don’t want that person to feel bad if they are reading this, because trust me when I tell you—I get it, more than you know. But even though I understand, it still hurts. It hurts that most people are not willing and/or able to see the purely sweet heart and soul that Keegan possesses. However, if I was a little kid, I wouldn’t want to hang out with Keegan either.

My husband has been battling with the ‘losing friends because of autism’ thing. He doesn’t understand why others do not reach out, especially ones who were close. I, on the other hand, understand why some friendships end after the autism diagnosis. I believe people struggle with what they are supposed to/not supposed to say and do. They have no idea what that family is going through, they can’t relate, and they don’t want to say the wrong thing (my opinion, anyway). And, I know we could do some of the reaching out, but it’s hard when everything in your life feels negative, and you don’t have anything to contribute to that relationship because all of your energy is given to this one little human being.

As I am feeling sorry for myself, listening to Keegan cry with his ABA therapist, I realized that maybe I had the crazy dream last night because of something I thought about before falling asleep last night. I was in bed thinking about the fact that I had not prayed in a very long time. I used to pray for others who were struggling, and rarely what I wanted or thought I needed. I would always tell God (or whatever higher power is up there) thanks for everything he has given to me, and allowed to happen to me, to make me who I was. I felt very blessed, and tried so hard not to take things for granted. When Keegan’s struggle began, I think I prayed every night. I prayed he would sleep more than 6 hours, I prayed he would start talking, I prayed he would look at me when I called his name, and I prayed that I would be the best mom I could be while he struggled so much. The list of prayers went on and on.

When nothing was improving, and none of my prayers were answered, I stopped praying. I stopped relying on the higher power to help me through, and realized I was in this alone. However, on the flip side, I also feel that God has made me a person who can deal with this lonely and frustrating battle. I realize that maybe this is my “calling”, and my fate. Maybe I’m supposed to be that ‘lone survivor’ who somehow saves the day, even though she has to do it all by herself. And as much as I struggle with it, I am OK with it, and I accept it. I have to. I just wish some days were easier and not quite as lonely and frustrating, for me AND Keegan.

Link This, Autsim!!!!!!!!!

I just opened my Facebook news feed after a couple of days of FB vacation, and the first post I see is about a new “link” to autism. Because I have a child on the spectrum, I am part of many autism support groups, both in person locally, and amongst social media. It seems like everyday I see something new about a study that found some sort of correlation with autism. I’m here to say, I am so sick of it!!!

At first, I would read every single one of these and act accordingly. If they told me that autism is merely the result of a gut issue, I would buy the best probiotic I could find. If I read that it was a gluten issue, GF all the way! If it was a dairy issue, cut the cheese (pun intended). Then, you realize you are only left with a handful of food options. Then the “research” tells you that you can’t have any corn ingredient either, so then you are down to only 3 options to give your child. While you are starving your child, and following what all the books and research say, you realize your child is not improving, but is regressing instead. Then you try something else, because that’s what is in the updated autism news ‘links.’

You read that B vitamins tend to be very low in autistic children, and his third blood test confirms this. You order $200.00 worth of B12 shots through a special ASD (Autism Spectrum Disorder) pharmacy, and give your sweet little baby a shot in the ass every 3 days. You do this for an entire 5 straight months, because that’s what everyone says to do, and you still see no improvement and even more regression.

Now you are starting to get a little skeptical. You want to try everything because there is so much out there that talks about “curing” autism, but nothing is working, and is actually making the situation worse. The Dr’s tell you to try it for 1 more month to get the full effect. You are torn between torturing your child and “curing” this horrific “disease”.

Then you read that ‘paternal age’ is the big correlation to autism. Do you hate your husband for being old? Or hate that he is hating himself for being old? You then read that the pitocin that the Dr gave you when you were in labor could possibly have caused the autism. Do you hate the Dr for not giving you the option of taking it? Do you hate yourself for allowing that to happen, and not reading enough about pitocin before your delivery?

The list of “reasons” and “links” and “cures” go on and on. So, what do you do? Do you turn off all social media and the TV, and live in your little bubble of ignorance? Only to later beat yourself up for not reading enough or asking enough questions to help your child.

Then, when you decide to check out new “links”, you start asking yourself questions like, “If autism was a gut issue, what does that have to do with my husband being old at the time of conception?” Or, “If it is because of gluten, then how is it that all of the high functioning autistic children I meet eat gluten-filled diets all day long?” So, when do you stop the madness? When do you say, ‘I don’t give a shit how or why my son is autistic.”? Or do you continue to jump on one leg 3 times while holding your breath and patting your tummy with your left hand with one eye closed because that’s what the books say to do to cure the autism?

I don’t think it ever stops. At some point you have to weigh your options. You have to assess if you have given it enough time, if you are seeing improvement, and if it is within reasonable limits. You also have to let go of any guilt that you may have about your own role in his autism. You have to ask yourself why it is so important to ‘cure’ him, and what that means to you.

Someone told me today that they drank out of the water hose all the time when they were little, and they were fine. So did I. So, of course, I immediately thought ‘maybe that’s why my son is autistic.’ Sorta jokingly, but not really. This is the kind of thing I’m talking about. This is what we parents of autistic children do all the time. Overanalyze, over-assess everything because there is no reason or cure…………yet. But we still try, because that’s what we do. And we never give up.

The best advice I was given while reading one of those ‘autism links’ is to love your child unconditionally. Don’t let your child think that you believe he is ‘bad’ or ‘wrong’ because he is not considered ‘normal’. Appreciate him for the awesome person that he is, and learn to love his oddness. If only others could do the same, there wouldn’t be so much emphasis on the cure.

Today I Hate Autism, and Autism Hates Me

I love my child with everything I have, every day, all day. But some days I hate his autism…………..today is one of those days.

It started with a not so great night of sleep. This is very common with autistic children, and especially mine. His usual pattern is waking up at 3 or 4AM and staying up until 6 or 7AM, then going back to sleep. This time he slept all night, but woke up at 7AM (9hrs). For some reason, when he wakes up before 8AM, he is a nightmare. He is so tired and cranky. So, I was prepared for what was to come, but that doesn’t always make it easier.

We had a birthday party to go to for a kid in the neighborhood who is turning 3. I knew this wasn’t going to go over well, but we are always told to take our ASD (autism spectrum disorder) kids out to social events as much as possible. On a side note, just to explain another example of my ‘hating autism mood’………we were at the pool yesterday when this particular birthday boy, who was with his grandmother, said “Hi Keegan,” to which, of course, Keegan didn’t respond. He not only didn’t respond, he didn’t even look at him and kept stimming away. As grandmother looked at Keegan like ‘what is wrong with you?’ (I see that look all the time), I had to say “sorry, he is autistic and has a hard time communicating.” Grandma looked a little perplexed and didn’t respond. I’m sure she had never heard of autism.

So anyway, we get to the party and, of course, Keegan just wants to be held. That’s it. Will not let me put him on the ground. There are tons of kids running around having a great time, and Keegan refuses to put his feet on the ground. Part of this is because he was tired, but the other part is just autism. He was probably overstimulated, and confused at being in a place he had never been—two things that are always hard for ASD kids. He then began to whine and ask for his juice. Of course, we were in an area where no food or drink were allowed, so we stepped out of the area to drink. When I tried to take the juice away from him and proceed back to the party area, he began crying and whining in his ‘this is only going to get worse’ kinda way.

This is where my bad parenting starts to play a role. For those who are always telling me how great I am, and how patient I have become, this is when I call bullshit. I start to feel that ‘if my child was normal, I wouldn’t be sitting here miserable, I would be happily watching him run around like all the other kids’ kinda way. I try so hard not to let this happen, but I am human. I know I should be thinking ‘poor baby is just tired, at least my child doesn’t have cancer or something worse’, but sometimes life gets in the way of happy thoughts.

I began to get angry and frustrated that this is my life, and I will probably never be able to enjoy a kid’s birthday party ever again. Not that kids’ birthday parties are ever really fun, but it would be nice if my child could enjoy a birthday party. He can’t even have his own birthday party. Keegan just turned 4 and we had nothing but a cake, candle, and 2 presents from grandma and grandpa, while daddy and I sang him happy birthday very quietly, as to avoid upsetting him with loud singing. And we had to open the presents for him. He had no interest. We could have afforded a party, but it would have made him anxious and upset to be in a party setting. So what is the point–it is for him, after all.

We abruptly leave the party before the behavior escalates. Actually more like before I escalate because, luckily, Keegan has very little behavior problems and rarely tantrums. But, I knew the whining and the holding was not going to cease. Which was just pissing me off, so yep, you guessed it……….Keegan picked up on my anger and frustration, and began crying. He is very perceptive of others’ feelings and emotions. I read once, which makes sense, that children who have limited receptive language have to rely on others’ behaviors and emotions to dictate the situation. So, we were both in a state, and just figured it was better to leave. I get in the car and whine to my hubby on the phone about another fabulous autism experience, and Keegan falls asleep, just as expected.

He rarely naps, so when he does I dread it more than I enjoy it. I know that when he wakes up, he will cry and whine for at least 20 minutes. He hates to wake up from a nap (he gets that from me). Of course, that is what happened, then came the dreaded lunch. It’s only dreaded because he never eats, and that always stresses me out. My friend asked me the other day (who obviously has no children and is not too familiar with autism), “Doesn’t it worry you that he is not getting adequate nutrition?” I didn’t bother to tell her that I have had sleepless nights, upset stomachs, fights with hubby, non-stop conversations with his developmental pediatrician about it, and am currently getting feeding therapy with 2 different speech therapists. I just said, “I have to remind myself that if he is eating anything, he will live…….for now, anyway.” I also didn’t bother to tell her that if I spent all of my energy worried about his eating, I would also have to worry about every developmental milestone he still has yet to achieve. I would have to stress out that he can’t draw a circle when told to, that he can’t sing his ABC’s like all kids his age, or that he can’t cut paper. I would also have to worry that he still sleeps with a pacifier every single night, and that he can’t drink out of a regular cup, only a straw. I would have to stress out about the fact that he may never be potty trained. The list goes on and on, so at some point, you just have to stop worrying to avoid killing yourself.

Now, back to the rest of the shitty autism day. Off to Keegan’s favorite place in the whole wide world (sarcasm)…….getting a hair cut! To make matters worse, we decided to try a new place and new stylist, so that is always risky. While finding a parking spot, Keegan already started crying. He did exactly like I knew he would during the cut………………..cried like someone was stabbing him in the stomach repeatedly with a serrated knife. I know most children hate getting their hair cut, but I think Keegan thinks he is having another blood draw, or getting more shots. Maybe the hair falling on his neck feels like needles on his little skin. Because he can’t tell me, I’ll never know. The stylist was so awesome, but that didn’t matter. Keegan still hated every bit of it, and the tears streaming down his face made me want to cry with him.

So, I thought I would ease his pain a little with ice cream. Luckily, there was a Marble Slab Creamery right across the street. The whole time in line he is crying in my arms. We sit down and he stops crying to eat his ice cream, thank God. He takes 2 bites and starts screaming. I’m thinking brain freeze, or the radio is bothering him. When he refuses to eat anymore, I begin eating it. After all, my mother always told me that you shouldn’t waste ice cream. After the first bite, I realize why he is crying. It was so gross. I’m not sure if the people didn’t know how to make ice cream that day, or if we just got a bad batch, but it tasted like powder with milk ,and no flavor at all. I almost began to cry with him, but instead just picked up his sad little body and carried him to the car. Epic fail for mom.

We get home and decide to go outside to swing, which is his favorite thing in the world. The minute we start walking down the porch stairs, it starts raining and lightning. Out of nowhere. Another epic fail for mom. Tears, tears and more tears. You never tell an autistic child you are going to swing, then say ‘just kidding, we aren’t.’ We went inside and I just sat on the ground, holding him, and crying with him. It hurts when your baby cries for most of the day and as a mom, you can’t do anything to make it better. I just wanted the day to end.

Luckily, the night ended on a much better note. We took him to his favorite restaurant (the only one we can go to and not get too many looks while he jumps up and down in the booth throughout the entire meal). And, HE ATE A BUNCH OF PIZZA! Now my night was made. He ate and we were all happy. Maybe this autism thing isn’t too bad after all. Always a roller coaster. I have to constantly remind myself of a great quote. “Everything will be OK in the end. If it’s not OK, it’s not the end.” At least it was OK at the end of the day…………….tomorrow is another day.

My Judgment Day

I don’t blame those judgmental, uneducated, and uninformed people who frown upon me and my autistic child whatsoever. Why is that? Because I was one of them.

I always looked at those parents and unruly children and rolled my eyes in disgust. I would think, ‘how could those parents let him get away with that behavior? That kid is such a brat!’ I would assume that child had control over his/her actions and just chose to do the wrong thing.

I worked as a school social worker with autistic children, along with taking numerous classes in grad school emphasizing special needs. People sometimes say to me “well, you are lucky that you have the knowledge and the experience for dealing with autism”. I have news for you people…………none of that prepared me. I was still judgmental, and never truly understood what it really meant to deal with autism until I became an autism parent. You can hear about it all day long, and play with these kids during the day at school, but that doesn’t even come close to the daily ins and outs of autism.

Since the start of this journey, I realized how important it was to help people NOT be like me. I want to help others see autism through the child’s eyes (or the adults), and to understand before they roll their eyes……..to stop themselves from assuming the worst. I’m happy to say that I have had at least 2 friends tell me that they look at children and their behavior differently when out in public. They stop themselves from judging and think ‘that child might be autistic and may not be able to control himself.’ I had a supervisor tell me once that if I helped just one patient the entire time I worked at the hospital, I did my job. Well, I want to change more than one persons perspective. If that’s greedy, then I’m sorry….not sorry.

I realized the other day, at the hospital that I work at, that I still have a lot of work to do. We don’t usually admit autistic children unless they have another mental health diagnosis that needs acute care. There was an autistic/aspergers child who was being a little difficult. But if you knew about autism, you would know he wasn’t just being a brat. He was frustrated because he didn’t want to eat his lunch and the staff was taking away some of his privileges because of this. If these counselors knew anything about autism, they would know that most autistic children have food/sensory issues, and they would not try to make the child eat, or punish him for not eating. You would also know that some autistic children (especially mine) don’t understand the ‘if this, then that’ concept. It may be too abstract to some.

They then proceeded to physically take the child back to the unit without options or warning. For those autism parents reading this, you know what happened next. Yes, the child began to have a complete meltdown, which required the staff to become aggressive with him, when given no choice, to avoid the child hurting himself or anyone else. My first thought was ‘my child is one of the few autistic children with very little behavior problems, but if they pulled him up off the floor like that, you would probably see Chucky-like, crazy-ass behavior problems emanating from his little body.’ I understand that it is instinctual to treat a child in a psychiatric hospital the same as the next psychiatric patient with mental health problems. But not all behaviors are the same, or should be tended to in the same way. Long story short, I did tell the necessary people and urged some autism education, but only time will tell.

Anyway, I’m not saying these particular counselors were judgmental or ignorant, but uneducated for sure. They were assuming that this child was in control of his emotions and behaviors. They thought punishing him was going to set him straight. For some, this does work. But understanding everything about autism would have helped this child remain calm and avoid a meltdown all together.

As I have said before, I am far from perfect, and not at all the worlds best mom, or even best autism advocate. The other day, someone called me judgmental and it made me think……..I probably do have a lot more work to do in that department myself, but I think everybody does to a certain extent, I don’t care who you are (or maybe that’s just me being judgmental, lol). It’s very hard to put yourself in other people’s shoes, but just keep in mind that most people are just trying their best. Educate yourself before you judge others’ actions or behaviors, especially those in children. Someone asked me years ago why I became a social worker. My response was “I gotta get to heaven somehow”. Little did I know then that I was (and still am) nowhere near getting into those pearly gates.