5 Minutes of Autism

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

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

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

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

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

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

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

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

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

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

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

We got this!!!

The Deadly Side of Autism

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

I will tell you how.

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

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

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

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

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

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

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

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

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

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

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.

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.

What NOT to Say to an Autism Parent

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

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

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

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

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

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

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

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

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

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

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

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

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

You Can’t Miss What You Never Had (The Autistic Mother’s Day)

It’s Mothers Day……………and thank God I planned ahead. I knew hubby was going to be working all day so I got a sitter. I went to a bookstore to enjoy the quiet, and I began thinking about Mother’s Day and what it means.

For most of my life, Mother’s Day was about MY mom. I wasn’t a mom, so it was just about appreciating her and loving her, which has always been easy for me to do with the mom that I am fortunate enough to have. I never longed to be a mom myself, so just appreciating the fabulous one I had was enough every Mother’s Day.

I began to look around the bookstore at all the families, wondering what they were thinking about Mothers Day, and how they were celebrating. All these “normal” (that’s my word for not autistic) kids running around, their parents quietly reprimanding them to calm down, and to stop running. I realized these parents didn’t have to think about what restaurant was the least sensory over-stimulating when they made the brunch reservation. They didn’t have to pay a sitter to actually enjoy their day. They were able to spend the day with their kids because after all, it’s “Mother’s Day.”

I imagined that these “normal” kids jumped on their moms beds that morning with a breakfast that they made themselves. They presented their mom with a picture they drew and signed all by themselves saying how much they loved her, and how happy they were that she was their mom. Then the whole family went to church together because they were either able to drop the kids off at the church nursery, or that they actually remained quiet while sitting with them during the sermon. I assumed they continued the day with a little lunch and shopping as a family.

I then thought about how different my morning was. When my son woke up, no words were said. No “Happy Mother’s Day”. No written portraits of love, and no hug or kiss. No “I love you.” My hubby had already left for work, so it was just me and my son, like it is everyday.

The only word that Keegan uttered in the first 1 hour of waking up was “muffin”—my sons only way of saying he is ready for breakfast. Luckily, he actually ate the muffins. As I was getting his lunch ready for the babysitter, I finally got a chance to look in his backpack from Friday. In it was a homemade card that was supposed to say “Happy Mother’s Day”, I think. It was, of course, not very legible because his facilitator is the one who actually did it, hand over hand with Keegan. I then thought about the other kids in his class that were able to give their moms an actual written one, without the help of the facilitator, and how they actually understood that they were giving it to their mom because she was special.

Sitting in the bookstore, I began to receive a bunch of wonderful texts and FB posts from friends about how great of a mom I am; how inspirational I was because I worked so hard at helping my son with his autism; how strong I am because of everything I have had to endure along this autism journey; how much they were thinking of me on this day and how hard it must be that I don’t get the feedback that other moms get on this day…………..

It took everything I had to keep myself from breaking down and crying right then and there; crying because they were being so sweet to me; crying because they were so right and so wrong at the same time; crying because I know I’m a good mom, but guess what–my child is still autistic; crying because they were able to feel for one split second the pain that I feel on a daily basis; crying because they were able to enjoy Mother’s Day with their child; crying because I was so NOT inspirational on any level; crying because I had never envisioned my life being this way……spending money to pay a sitter to be away from my child on Mother’s Day. That was how I was celebrating “my” day. Does that make me a better mom than others? Does that make me inspirational? No, but it does make me real and true to myself, and maybe that’s what makes me a good mom.

Maybe I’m a good mom because I am taking care of myself. I am making myself relax by going to a quiet place where I don’t have to hear constant whining, or a 20 minute meltdown for some unknown reason (not from my child, anyway). But, even if I had to spend “my” day dealing with tantrums or listening to constant teeth grinding, that’s OK by me. Maybe I’m a good mom because I accept my child for who he is AND who he isn’t. Maybe I’m a good mom because it’s all I know and frankly, I don’t know what it would be like to have a “normal” child. Maybe I’m a good mom because I had the best example of one filled with unconditional love. I don’t think I’m any better than the next mom. I guess my mom duties require a little more armor than some other moms, so it stands out more.

It does hurt that I won’t hear my child tell me that he loves me today, or any day soon. It does hurt that my son is not able to give me the same kind of hug and kiss that other kids give their mom. It does hurt that he won’t be bringing me breakfast in bed. It makes me happy, however, that he will hopefully look at me and smile before the day is through. It makes me happy that he will lay his head on my shoulder as I read him a book before bed. For the most part, I love being a mom, despite the lack of extra admiration from my son on Mother’s Day. After all, you can’t miss what you never had.

So Funny I Forgot To Laugh

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

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

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

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

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

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

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

Why Is Your Son Autistic?

I have been asked this question a few times. Why do I think my son ended up with autism? Well, if I had the answer to why anyone has autism, I wouldn’t be writing this right now, and I would probably be really rich. And, my son would probably not be autistic. I don’t mind getting asked this question, because I know they mean well, but I obviously have no idea.

Everyone has heard all the “theories” as to why autism exists. Is it a disease or a disorder? Is it neurological? Is it from those damn GMO’s or the vaccinations, or both? Is it really just a ‘gut’ issue, and they just need a really good probiotic, or a gluten-free diet? Or maybe just some essential oils will do the trick to somehow stimulate those brain waves. Or, maybe if those “old” people would stop having babies, there would be no autism.

Obviously, I have no idea where it comes from, but we all have our theories. I could give you my hypothetical opinion, but it would be just that…….an educated “guess”. It is, however, a fact that very young people have autistic children, so there goes that idea. It has also been proven time and time again that vaccinations have NO correlation or causation of autism, yet people still refuse to vaccinate their children. I could go on and on, but I won’t.

You can also look at the other side of “why”. The philosophical and somewhat biblical theories. Without getting into religion, why would God allow this to happen to me? What is the reason I ended up with this challenge? You would be surprised, but there are many different theories on this, too. For instance, I don’t dwell on the “why” as much as my husband does. I look at is as “well, I guess for some reason, God wanted this for me.” Maybe those few terrible things I did throughout my lifetime…….I’m finally getting my karma. And I’m good with it. Not so good with the struggles I go through on an hourly basis, but good with the “punishment”, so to speak. Let’s move on and deal with the situation at hand. Maybe in the long run I will be a better person, and that’s what was meant for my life journey.

My husband, on the other hand, is still stuck in “why.” He feels he has been so good his whole life that he should be rewarded and not challenged. He didn’t do anything to “deserve” this. I can very well respect his view. However, I can’t say the same because I have not been the saint that he has.

Nothing is right or wrong from these particular perspectives. I do, however, think that the more positive you try to be, the more positive your relationship with your child and the more positive the grueling journey. Is this easy? Hell no. But this is what I try really hard to focus on. I can’t control the reason he is autistic, and I’m finding that I also can’t control the cure, no matter how hard I try. But, I can control how I handle the situation, regardless of the “reason.”