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.

If ‘Autism’ Was A Man

If autism was a man, I would kick his ass to the curb!!!!!

I realized this while I was happily dressing my three-year old as he screamed and cried because I woke him up too early.  I thought to myself, “if you were anyone else, I would not be smiling or wanting to kiss every inch of you right now”. I guess that was my  ‘Aha! moment’, that this is what unconditional love is all about. It’s that feeling that no matter how difficult that person makes your life, he is still worth every heartache.

However, if this was a man, I have to say, I would not be hanging around.  Let’s think about a typical day in the life of this “man.”

–You wake him up and he screams and cries for at least 20 minutes. On the flip side, there are more than enough days that he wakes YOU up screaming and crying. Either way you lose. Then, there’s the wake up at 3am and stay awake until 5 or 6, just because he wants to. Every scenario sucks!

–Then you start to make him breakfast. You have to guess what he wants because he isn’t talking to you and he is unable to make breakfast for himself (lazy ass).  So you decide on pancakes. You put them in front of him and he throws the plate on the floor while screaming “NOOOO.” Instead of getting upset, you have to figure out what it is that he really wants to eat. You break out the mini muffins, because he actually likes the pre-packaged shit better than the homemade things, which is fine by you—that means less cooking. Maybe he’s not so bad after all. But then you have to worry about whether he is getting enough nutrition, or whether he is getting too much sugar, or that terrible gluten stuff. Oh well, worry about that another day.

–Then you have to pack his lunch for school because, again, he’s a lazy ass. You have to play the guessing game once again, knowing the teacher may tell you he didn’t want anything I packed for him, then YOU are the bad woman. At the same time you are packing the lunch, you have to put on his shoes AND his jacket for him. Heaven forbid he could do it himself. Maybe I am enabling him? I don’t know. These are the type of questions you are constantly asking yourself.

–Then comes the part that you spend most of the day doing………..driving him everywhere he needs to go.  You hope one day he gets a driver’s license so you don’t have to keep doing this. He’s only in school for part-time, because he doesn’t have enough experience or eduction to go full-time yet. So, once you pick him up from school, you have to take him to some form of therapy. This is everyday! Every single day. Monday and Tuesday its to speech therapy, because he’s a typical man and can’t communicate. Wednesday and Thursday, it’s to occupational therapy, because he needs all the help he can get in order to hopefully be gainfully employed sometime in the future. Friday it’s to ABA (adaptive behavior analysis) because he needs some behavior modification in order to be a good husband at some point. And Saturday and Sunday, it’s “play therapy” time. This is actual work, but they call it ‘play’ to make him feel better about it. Just like a man–have to use the word ‘play’ to get him to agree to anything.

–Then its home, where you have to keep a solid eye on him at all times. He might ruin the furniture somehow, or decide the plant looks too fabulous not to eat. Or, he might try to unlock and open the door for a quick getaway. Typical of a man, right? You also have to watch what HE wants to watch on TV, and you don’t get a choice. It’s Team Umizoomi or nothing.

–Then comes the dreadful dinner, where it’s a repeat of breakfast, but usually worse because he’s tired and cranky. It’s an almost guarantee the food will end up on the floor again. So, you have to pick the chicken nuggets over the pizza (which is the only 2 foods he eats at night), so the mess is less. You ask him if he wants strawberries or grapes with it and after a few seconds, he mutters a slight “stawby”. You clean and cut the strawberries, only to realize he actually wanted to eat the grapes but felt like saying strawberries, just because it was more fun. Saying one thing and meaning another………..sound familiar, girls?

–And last but not least………bath time. Of course, he can’t get the water temp right himself, and doesn’t know how to soap and rinse, so you have to do it all. And dry, dress, and put him to bed as well. So high maintenance! To top it off, he wants the exact same three books read to him every single night, and without it, a major fight ensues. Always has to get his way, just like a man. Then I go in for the hug and kiss, only to be pushed away and rejected as usual. That part is usually the reverse with a man and woman, but anyway.

So, as you can see, if autism were a man, he would definitely not be in my life. Too high maintenance, inexperienced, negative, and difficult. However, “he” is my whole life, and his name is Keegan. He is autistic and I love him more than life itself. Yes, it’s hard, and sometimes I am just going through the motions. But he makes it a little easier each day. I guess I’ll let him stick around.

(P.S. This post is in no way meant to mock autism, autistic children, or the process. It is simply my way of dealing with a stressful situation in a lighthearted way.)

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.”

The M.B.A. (Me Before Autism)

As most everyone in my life knows, I have a son with autism. This has brought many challenges to my life (and his), and I feel like I have so much to say but there’s nobody who totally  and completely understands, unless you are jumping the autism obstacles as well. But even in the autism community, some parents will think “at least your kid can talk”, or “thank God my child doesn’t have that other kids’ temper tantrums”.  There’s never a true understanding, except for those living in your own home.

I just realized something the other day. I have been so busy with the autism drama over the past year and a half that I completely forgot about myself. I don’t just mean the old adage of, “you have to take care of yourself so you can take care of someone else”.  I’d like to think I do plenty of that. My husband and I do weekly date nights, and we love to travel. We are so lucky to be able to take at least 2 vacations a year sans child (thanks, mom and dad). I also get my monthly pedicures and my occasional massage. So, I’m not talking about the basic activities involved in staying sane. I’m talking about the psychology involved in order to remain who you are on the inside.

A few weeks ago, someone made me laugh so hard I was crying. The kind of laugh where you have no control. At that moment, I realized that I had not done that in over a year. I can’t even tell you who made me laugh or what they did to make it happen…….I was overwrought with my realization of who I wasn’t anymore. I used to love to laugh and make people laugh. I used to see the happiness on co-workers faces because, for some reason, I made their day a little bit better with my goofiness.  ‘That’ girl was not me anymore…………..I guess I hadn’t had a reason to laugh.

Later that same week, I put some kind of depressing post on Facebook about how horrible my life was, and one of the responses from an old high school friend made me think again about this realization. It said something like “your laugh is infectious, Karli”, and “you’ve always had the ability to be direct and funny at the same time”.  I thought, ‘yeah, that WAS me’.  I had been so busy with the autism battle, keeping my marriage intact, working at the hospital as a social worker for a change of stressful pace, making sure I was getting my ‘me’ time in…………..but who was I? Funny and infectious would not be the current description anyone would give about me if they had met me for the first time in the past year.

When did this happen? When did I lose me? It probably began to dissipate as I poured myself into books and blogs about autism, talked all the time with therapists and Dr.’s, cried incessantly during sleepless nights as my son happily jumped up and down in his bed for 4 hours straight with no sign of sleep, shoved supplements down my sons throat and in his butt cheeks in hopes to help him, tried to be a mind reader when my 3 year old was crying and couldn’t  tell me if he was in pain…………I guess it happened somewhere in there.

Unfortunately I don’t have the answer for how to avoid this for others, or how to get my ‘me’ back. However, if my son started talking tomorrow, it might start to creep back. Or, if he actually would appear to be improving rather than regressing, I would definitely feel the possibility of funny coming back. But until then, I can only be cognizant of the fact that it is temporarily gone, and that I will need to put in a little more effort to get back to the MBA (Me Before Autism).