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.

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.