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.”

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.”

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.

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.

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.

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.