My Autism Hero

It’s been a long time since you’ve heard anything from me, I know. Look at that as a good thing, since I tend to write when I’m stressed or depressed, usually something related to autism. So if I’m off the blogging radar for a while, assume I’m having the time of my life. Or at least hanging in there as best I can. This blog in particular is not really a stress release, or to celebrate anything amazing, but I’m hoping it is a bit more positive than my last 23 blogs. Maybe.

This last weekend was the first time that my husband and I had a night to ourselves, as a couple, for over a year. Well, most of the evening was spent at a birthday party for an 80 year old friend, but after that we got a hotel room, since the sitter was able to stay with Keegan for the weekend. We don’t do this often, and for many reasons. The main reason is because the sitters definitely don’t work for free, which is more than understandable. So, any overnight fee is quite expensive, especially for a special needs kid. Also, there is a slight chance that the sitter will be up for half of the night with Keegan, so I always feel like we need to pay top dollar just so they can take Monday off of work to catch up on their sleep.

We didn’t really know what to do with ourselves last weekend, my husband and I. Don’t worry, we didn’t get wasted, since it was a low-key birthday party. I guess we could have, but it probably wouldn’t have been very prudent. So we honestly just went to the hotel to sleep, which is something we never get, thanks to autism. That was the first night in a REALLY long time that I got at least 8 hours of sleep. I think it was closer to nine hours, which is unheard of in our household. But, Jesus, I needed it.

Most of the night was spent talking a lot about Keegan at the party, since so many people wanted us to bring him, and kept asking where he was. We always get asked this everywhere we go, and it drives me crazy. I totally get why people ask, but there’s not an easy way to say why we don’t bring our severely autistic nine-year-old with us to parties. One response we might give is, “Well, if you don’t want all of your breakable household items turned into a million little pieces, than you should be happy we left him at home.” Or, “He would not have been able to handle the noise level,” which is true in most environments. Or, “He wouldn’t be able to sit at the table and eat with everyone”, which is more than true in all instances. Then there’s always that one same question that comes out of their mouths next………”How old is he?”

I understand that the reason they ask this question is because my responses make Keegan sound like a pain-in-the-ass, unruly two year old. They may know he’s autistic, but they are comparing him to Dr. Shaun Murphy on The Good Doctor, or their neighbor’s seven year old autistic daughter that always comes over and sits nicely for their dinner parties. Keegan isn’t like that. At all! His little body doesn’t allow it, for lack of a better overall explanation.

I will give you two real time examples, which both happened today. First, I was talking to Keegan’s occupational therapist in the waiting room, and in less than 10 seconds, Keegan found a dust bunny next to the couch and shoved it in his mouth. It was a good sized chunk of dust, too, which I had to pull in strings out of his mouth. Then, tonight I was trying to figure out Keegan’s toy accordion, and in less than 20 seconds, he opened the tub of sensory water beads. I not only forgot that he had that bin of beads, but I didn’t think he could open the container. I’m not quite sure how many balls he got in his mouth and swallowed, but I’m sure in that 20 seconds it was at least three or four.

All autistics are different, and I wish people could just understand that. I know it’s recommended to take autistics to outings and social gatherings, regardless of severity or age. And I agree with this. But, there’s just some times that I don’t want to chase him around everywhere. He can’t be left alone, or out of a parent/caretakers vision for more than two seconds, and that’s no exaggeration. My child is the sweetest and cutest child in the world. And believe it or not, most who know him would actually say the same, not just his biased mom. But his autism is hard. And when you want to relax and enjoy friends, and maybe drink some wine in-between, you simply can’t when you are with Keegan. There would probably be wine all over me, or you. And, I would have zero chance to catch up with anyone. And some days I don’t want to be an autism mom. I just want to be Karli.

But I digress……..

I know I said this blog post would be positive, and I’m getting there.

So, back to the party last weekend. A woman at our table was talking about her son winning his soccer game earlier in the day. Then another mom chimed in about her daughter going to college next year. I then looked over at the “kids table” and saw a group of about six kids, ranging in age from 5-10 years, playing silly games with each other, and themselves. These are all neurotypical kids I’m speaking of. Or in non-autism-world language, these are “normal” kids.

My husband was hearing and seeing the same thing, so I knew what was coming next. He then turned to me and said, “I wish Keegan could have joined us this weekend.” Then came the usual, “I wish Keegan was neurotypical, and we would be taking him to soccer practice, and excited about him going to college, too.”

But here’s where I had an epiphany of sorts. A crazy thought crossed my mind that I honestly don’t think I’ve had since my son’s diagnosis. I actually felt more sorry for these neurotypical moms than I did for myself. Then immediately after I had that thought, I questioned myself in my head what I meant by that, and why I thought that. Yes, I would love to have a neurotypical child. But, I realized in that moment how lucky I was that I had this little man in my house that was teaching me so much every single day, that was making me a better person every minute, and was also strengthening my marriage. This is not to say that a “normal” kid can’t do these things to parents, too. But, it’s totally different when it’s on the special needs scale. When you have a severely autistic child, you appreciate all the little things so much more. You pay it forward when you can. You reach out to others more, both for help and to help, because you understand how hard life is. You appreciate that life so much more, because you have a reason to live it. You get to know yourself so well, usually because you don’t have a choice, but still. You judge less, because you now know too well how it feels to be judged, which unfortunately happens too often with special needs parents.

I’m not saying that Keegan has made me perfect, but he has helped me love my perfectly imperfect self. I mean, how many people are lucky enough to have a little person teach them more about the world and others than they ever thought possible.

Keegan is my hero!

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.

The Lone Surviving Autism Mom

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

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

This is the life of autism.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today I Hate Autism, and Autism Hates Me

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

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

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

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

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

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

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

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

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

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

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

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

My Judgment Day

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

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

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

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

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

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

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

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

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.