Progress Schmogress…….The Autism Progression Myth 

It’s been a REALLY long time since I’ve done one of these. I’ve been busy writing my book (and having some fun in between) and I finally got some ‘blog inspiration’ today.

Sometimes reading other people’s blogs about autism will strike a chord in me and make me want to expand or dispute that particular topic. Todays topic was something like, “What is the hardest part about autism?” This particular writer said that her big thing was ‘other peoples’ perceptions and misconceptions about autism in general, and how autistics have not been accepted into society as a whole. I 100% agree, and this issue is a biggie for me too. However, it made me think about what bothers me the MOST about having a child on the spectrum, and that answer was easy. Unfortunately I can’t sum it all up in one sentence, but I will try to narrow it down:

Most people, even the autismly uneducated (I just made that up, but I like it), know that all children on the spectrum are different, and have different abilities and disabilities. But with that also comes the assumption that all autistics will improve with early intervention and therapy. THIS IS MY HARDEST PART!!! Because they don’t!

I can only speak for my own experience with my son, but to explain a little about my precious Keegan, he has always been on the spectrum in my opinion, even since birth. However, a lot of his milestones were just slightly delayed. Even though he wasn’t saying “mom” or “dad” before he was two years old, he was counting to 20, naming every single color he could see, along with every shape, including the dodecahedron (yes, that is a thing–It is 12 sides). Sure, most of it he learned from Muno and Brobee on Yo Gabba Gabba, or Geo and Bot on Team Umizoomi, but he was learning, retaining, and demonstrating. We started occupational therapy, speech therapy, physical therapy, ABA therapy and every other therapy before he was two and a half. We were also seeing a developmental pediatrician, chiropractor, and a psychiatrist. Plus, we started strict diets and nutritional supplements. We read it all and did it all (and I’m not even listing everything). Luckily we could afford it, so my husband worked for it, and I drove Keegan all over for it.

Jump ahead 4 years………..Keegan is almost six and a half. He cannot count to 5. He is still not potty trained. He still can’t say “mom” or “dad”. He lost most of his speech. He lost his concentration and focus for almost everything. He has zero interest in absolutely everything (besides dribbling a ball–he can do that like nobody’s business). He says ‘orange’ when he really means ‘blue’, and calls the letter “D” an “F.”

Somewhere around 30% of autistics will regress around age 2-3 (and no, it is not because of the fucking MMR shot!! JS!). I’m not sure on the percentage of those who gain those skills back, but my child never did. Did we give up on him? Hell no! Are we going to give up on him? Absolutely not! He is still attending ABA therapy daily at the Marcus Autism Center, and has for over a year. He is still getting speech and occupational therapy, and many more treatments and therapies that we have added and/or never stopped.

Another annoying assumption that I get asked all the time is “when will he get better?” There is no answer to this. He might get better, but he might not. I didn’t think he would regress as much as he did. I also thought he would at least gain some of his skills back by now, but he hasn’t. Therefore, I have no idea if/when he will ever get ‘better’.  If I knew when, I would put that expected “better” date on the calendar and have the biggest fucking party when the countdown ends. I would do so much more and stress so much less. But I don’t know and I may never find out.

I guess this regression issue hit hard yesterday when I received Keegan’s new scores for the VB MAPP (verbal/behavioral milestone assessment). He had little to no progress in most areas since his last assessment in 2014. That feels like a super strong punch in my gut. Also, his IEP is coming up next week, and they are talking about a new placement/new school for him, and that has me hurting inside, too. And to top it all off, I went to see the new movie, The Accountant, last night. It’s about a high functioning autistic, but I won’t give away the story. Anyway, these kind of movies always get me thinking about how others will view autism based on a certain character. I know many parents of autistic children hate the movie ‘Rain Man’ because of the stereotype it portrays. Well guess what…Rain Man does exist whether you like it or not……..he is my son.

Just like all autistics can range from the low functioning ‘rain man’ to the high functioning assassin/’accountant’, all autistics can improve/regress on all different kinds of levels. Sure, therapy should help, and most of the time it does. But sometimes it just doesn’t. I read a study once about two very similar autistic children who received the exact same treatments and therapies at the exact same time and the same frequency from the same person. One child progressed significantly while the other did not progress at all.

So, please don’t stop asking questions, even if I may not like the question. More importantly, you can ask even when I don’t like the answer I have to give you. Just remember my favorite saying….”If you’ve met one child with autism, you’ve met one child with autism”.

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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.”

 

 

To The Manager At The Theatre………from a fellow autism parent

I know I haven’t written a blog for a while, but I honestly haven’t felt moved by anything autism related…………until today.

My life has been quite the typical humdrum autism parent life lately, you know, being the chauffeur, cook, alarm clock, maid, and mind-reader that requires about 90% of my time. The other 9% goes to my sleep, and I guess the 1% goes to my “me” time, whatever the hell that is.

So my hubby had to work this whole weekend, which usually means park time, or just playing outside with Keegan. Unfortunately it won’t stop raining, so the fun had to stay indoors. After being stuck in the house all day and night Saturday, I decided to join my friends and their 2 kids (one with autism and one neurotypical) at the movie theatre Sunday afternoon. Now, we have gone to the movies a handful of times since Keegan was born, and was only slightly successful at the sensory-friendly one. All others were an epic fail. I wasn’t sure if I was up for the challenge, but I was fully equipped with a purse full of goodies. You know the goody bag—skittles, oreos, goldfish, etc. And to make it even better, my friends already ordered our popcorn and french fries, which arrived right after we sat down.

I thought we had it covered……until we didn’t.

We were seeing a special screening of Fantasia, the old Disney movie, celebrating it’s 75th Anniversary. I didn’t realize that the first 10-15 minutes of the screening was going to be a ‘behind-the-scenes’ look at the Philadelphia Orchestra’s rehearsals, along with a discussion by the conductor. I also forgot that typical screenings are very loud to the autistic ear.

So, as Keegan sat there with his hands over his ears and his eyes wide-open trying to figure it all out, I was trying to shove popcorn and fries in his face to distract him, knowing he was starting to “get there”, if you know what I mean. I even broke out the skittles and the stim toy, but they were also a no-go. We were already getting the ‘stares’ because of his vocal stimming sounds, and as I looked around, I noticed there were very few kids in the theatre. The youngest ones were teenagers, so I figured the adults just wanted to go to re-live memories of when they saw it as a kid, and bring their older kids with them.

After a few minutes of squirming and trying to get out of his seat, and me blocking him, Keegan looks right at me and says “go outside!” Coming from a child of VERY few words, both literally and figuratively, this translates to “let’s get the f*#& out of here now, mom!”

I grabbed my purse and goodies so quick, scooped up Keegan, and stomped past approximately 12 people in the isle on my way out, saying “Sorry, don’t worry, we are NOT coming back…….Sorry, don’t worry, we are NOT coming back,” over and over again.

Once we got out and into the lobby, I put Keegan in a chair and sat down beside him. I thought maybe if he chilled out, we could go back and sit in chairs closer to the exit door for an easier escape. Now, if only I could talk him into staying quiet and in his seat. This task is obviously close to impossible for an autistic child with very little verbal speech and even less receptive language. My motivation was to get back in there and finish those yummy fries (and they were still warm 😦 ).

As I got up to attempt another try, I realized that I left the tickets on the table next to the popcorn. Luckily the lady at the counter remembered me and told me it was fine to go back in. I then asked her if I could sit somewhere else closer to the exit, since the theatre was assigned seats only, and she told me to check with the front desk because she didn’t know. As we were talking, a gentleman that obviously worked there, and who must have sensed that “look” on my face, came up and asked what was wrong. I explained the situation and told him that my son was autistic, and that we were going to go back and try again in a different seat, if that was OK.

This nice man kindly said, “Here, follow me and we can get you guys a good seat.” As we approached the door to that particular theatre, Keegan’s anxiety became more apparent, and he began whining again. It was quite obvious at that moment that he did NOT want to go anywhere near that place again, so I said “You know what, it looks like it’s not going to work, but thanks anyway.” The man then looked at me and said, “I have a 25-year-old daughter who is also autistic, so I understand.”

I knew at that moment that he DID in fact understand, and that meant the world to me. I always hear people say, “Oh my neighbor is autistic, so I understand”, or “my cousins’ nephew has autism, so I get it.” But trust me, you don’t, and I completely respect that you don’t. But this was a parent who had been doing this for 25 years, and he DID get it. He was even doing it before autism was the cool thing to do (LOL), and when there was even LESS services than there are now. In fact, he probably “got it” more than I did.

This man then completely amazed me and said, “wait here, I’ll go get you some free passes.” As I’m standing in the dark hallway waiting for him to return, I am hoping that the staff walking up and down can’t see the gleam of tears in my eyes. When he returns, he hands me a pile of free passes, along with his business card. On the back of his card he had written his cell phone number. He then said, “Please call me if you need anything, passes, resources, advice………whatever you need.”

I was at a loss for words, and just told him thanks, and that the kind gesture meant more to me than he will ever know. I then carried Keegan to the car, strapped him in, got into the front seat, and cried for a good 10 minutes. Thank God it was raining so nobody could walk by and see me.

I don’t really know exactly why I cried, because it wasn’t ‘that time of the month’ for me, or anything. I think it was a mixture of the extreme emotions of disappointment and gratitude at the same time, of frustration and empathy at the same time, and of being unable to change the situation and accepting that I can’t change it at the same time. It can get very frustrating to see how easy things are for others when it is such a hard struggle for those with autism and their parents. And, it’s hard when you get another slap in the face that an attempted outing was once again a failure. But then again, it is so rewarding when you meet someone with a compassion that is so familiar, and an understanding that you can only feel with very few people………and free movie tickets to boot!

So, to Mr. Subko, thank you for making a hard time a little less hard. Thank you for telling me that it does get easier. Thank you for saying ‘hi’ to Keegan, and telling me that your daughter also responded with echolalia after Keegan said ‘hi,hi,hi,hi’ back to you (and thank you for knowing what echolalia even is). But most of all, thank you for actually understanding when you said, “I understand.”

I Can Hate Today’s Autism Meltdown, And Still Love My Son

Can you still be grateful and have a shitty day? Can you still be lonely and have all of the support system in the world? Can you be a millionaire but still be depressed? Can you take all necessary steps to improve your situation, and yet make little to no progress? Personally, I believe the answer to all of these is “yes”. The world is not black-and-white and neither are human beings (and I don’t mean Caucasian and African-American). There are many shades of gray (and I don’t mean Christian Gray).

I read one of those typical depressing mom blogs the other day (yes, I know my blog fits in the ‘depressing mom blogs’ category LOL), and since it resonated with me I almost shared it, until I read all of the comments. There was not one comment supporting the struggling mother. Every comment was very judgmental, hurtful, and aggressive. All of these “moms” took it upon themselves to tell the writer that she was ‘ungrateful’ and ‘bitter’ because she was complaining about an aspect of motherhood. Just because she was bitching about one negative thing, now she’s a horrible mom????

It reminded me of a similar experience that I had. One of my blog posts triggered another autism mom to bash my honesty, and told me that I was weak, that I didn’t believe in my son, and that his problems were because of me. Now I am all for constructive criticism, but basically calling me a shitty mom is not very supportive. Most moms, including myself, blog as an outlet. There’s not many people who understand exactly how you are feeling. And, it’s usually hard to talk to your husband about mommy problems (no offense, guys), so you got to let it out somewhere.

There’s also the issue of varying personalities. I’m personally not one to smile and say that everything is perfectly fine when it’s not. If a mom wants to bitch about a crappy aspect of her day, please let her do so without judgement. And if ‘pretending that everything is OK when its not’ works for you, then keep doing it, but don’t bash us. Or if someones opinion or advice is what you are looking for, make that known and clear.

If a friend told you she was going to jump off of a bridge because she was so depressed, would you give her the address of the bridge that had the most successful suicides and tell her to do it? I would hope not. Sometimes I feel this way when I am upset about something and venting, and someone tells me everything I am doing wrong and how I need to go about doing it right (and makes me even more angry when I am already doing said suggestion, and they still insist on passive aggressively telling me what to do). Now, I don’t mean when you actually call someone and ask for help or feedback. Then the suggestions are warranted.

Most blogs, and just plain bitching about the day, are just a release to make us feel better. It’s not an opportunity for someone to tell us how shitty we are, and how they have all the answers to make us as perfect as they are. I personally know, as a therapist, that many people need a swift kick in the ass and good direction for positive change, but you pay me for that. Plus, we aren’t even supposed to give ‘advice’ to our patients. Instead, we care for them, therapeutically support them, help them see the best alternatives, and provide resources.

I received a huge compliment yesterday after sharing a depressing blog post (not my personal post, but one I REALLY felt). An old friend told me that my honesty “allows moms the space to keep it real and to be perfectly imperfect”, and that “through honesty there is strength.” I appreciated this more than she will ever know. I, too, appreciate and welcome honesty, no matter how negative. I believe that’s why moms blog—-to “keep it real” and admit that they are “perfectly imperfect.” There’s  no need to reiterate how imperfect we really are. We already know it.

Sometimes all we need is a “I’m thinking about you”, or “I don’t know what you are going through, but I’m here for you,” or just a “you are doing a great job, mom.” Sometimes there is not necessarily a solution, but just an understanding of the situation. Or even if you don’t understand the situation, let them know you don’t understand but you want to.

Just because I always complain about autism and everything negative that it encompasses does not mean that I hate my child. Now, I will admit that I hate autism for the most part, but autism is not what makes my child. I would literally walk through fire and drink molten lava for my son, so hating autism doesn’t equal hating him. Most of my blog posts are negative, but does this mean I hate my life? Some days I probably sound like I do, but talking about it or blogging about it makes me feel better, and usually makes the next day wonderful. Some days are going to be shitty, and I should be able to talk about them without being judged, or told what to do. And, yes, I cry. Sometimes a lot—-but don’t assume that means I’m weak, or that I don’t have it under control beneath those tears.

 

What Every Autism Mom Wants for Christmas

It’s 6:30 AM Christmas morning and I have been awake for over three hours. No, I’m not waiting for Santa, or busy wrapping gifts. I am lying in bed wishing I was busy wrapping gifts, or that I had a reason to be excited for Christmas.

Holidays are not usually the best of times in an autism home. The break in routine, the lack of therapy, and the family visits can be a bit challenging. And in our case, add the sharing of pink eye throughout the house to make the holiday just a bit more cozy.

My 4-year-old autistic son, who struggles with sleep issues, is snoring away, of course. I’m sitting here thinking about how I was when I was his age on Christmas morning. I couldn’t sleep because I wanted to hear Santa on the roof, and I wanted to catch him in the act coming down our chimney. I remember leaving cookies and milk so he could be refreshed. I couldn’t wait to go into our living room and see the couch full of wrapped gifts–everything I wanted.
I also remember Christmas morning 4 years ago. I was holding my baby in my arms and I couldn’t wait till he was a little older and he could have those excited feelings too, and we could lavish him with everything he wanted.

Well, that day is here, and it is nothing like that. My son didn’t ask for anything for Christmas because he can’t talk. What’s worse, he has no idea it is even Christmas. He could absolutely care less that he has 10 wrapped gifts waiting to be opened. And to top it off, he won’t even open them. He would be much happier playing with the paper they are wrapped in–throwing it around in the air, or putting it in his mouth and chewing on it. The only thing that will make him happy this Christmas day is the popsicle stash in the freezer.

Facebook and Twitter has not helped the “Holly Jolly Christmas” spirit this week. It’s just a big fat reminder of how different my world is from everyone else’s. All of the birthday and christmas parties we were never invited to……..all of the school concerts that my child will never sing in…….the christmas trees that we will never have up because my son will tear it down or eat the ornaments…….the family portraits that we will never have because my child can’t sit long or look at the camera…….the christmas feasts my child will never eat………the messages from friends asking me what Keegan wants for Christmas when I just wish they would understand that as sweet as they are, Keegan is not able to wish for anything……..I really could go on and on, but then someone might 1013 me for a psychiatric evaluation.

When I took Keegan to the doctor the other day for his pink eye, the doctor was asking me questions as though I was just starting on this journey. “Is he getting floor-time therapy? Have you read the article about the autistic boy and Siri? Is he getting assistance in school?” And, of course, the answer was “yes” to everything. Then he said, “You just have to find that key to open him up.” I told him, “we have been looking for that key, and trying every spare key we could find for over 2 years. I know he is so delayed and so hidden in his autistic world, but it is not for lack of trying, Dr.”

I realize there’s only one thing I want this Christmas, and that’s why I have been tossing and turning since 3:00 AM. I wish Santa would slide down my chimney and bring me that key.

The Lone Surviving Autism Mom

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

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

This is the life of autism.

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

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

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

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

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

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

 

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.