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Autism is a big bag of crap.

Posted: July 19th, 2011 | Author: | Filed under: Autism | Tags: Autism, autism sucks, melatonin | 34 Comments »

Every night we drug our kids to sleep.

Melatonin has been our best friend. It’s a well-known remedy for autistic kids who typically have sleep issues. It has chopped the nightly wind-down time from 2-4 hours to around 30 minutes. For two parents who were used to going to bed with two boys still jumping in their cribs, it has been a blissful month.

Until this week.

They figured it out.

Both of them have been refusing their nightly dose of Melatonin and we are back to hours and hours of wind-down which ultimately ends with one of the boys in bed with us. If we give them a dose with the dropper, they spit it out. If we hide it in apple sauce, they push away the spoon. It’s tough to force a kid to drink anything, so putting it in their milk is a crap-shoot.

This was the *one* thing we thought we could fix.

Tonight, Lincoln got so worked up he started digging around in his nose resulting in a nice nosebleed which led to a short but strangely violent tantrum on his part. It was horrible.

These are the difficult things. These are the moments that leave us scratching our heads wondering what the future holds. We have a few steps forward and then steps back. Progress is slow and not altogether steady. These are the moments that make me worried that one is going to surpass the other.

I’ve kind of comforted myself that they are both in the same boat. They will both have the same struggles and they will face them together. Whether they know they are facing them together or not.

I don’t know if that is true though.

Yes, they both have autism, but they seem wildly different to me. I worry that they won’t both hit the same milestones. I worry that one will be left behind.

And it matters to me. It makes me so effing sad. This fabulous “twin” relationship they are supposed to have is a joke. They don’t even know the other one is there half the time and when they do notice it’s because someone took someone’s cup/ snack/ toy.

It just sucks.

Because we had all these dreams for these boys and instead we are here. In this shit.

Having to constantly explain to people why it’s shit and why it’s different and why we do things the way we do. And I hate it.

I just want people to know without us telling them. I want people to figure it out and then just do what we say. I don’t want to be questioned when we make decisions. I don’t want to have to explain myself. I don’t want to know what so and so said or what someone else suggested.

I say I wouldn’t change them, and I wouldn’t. The are perfect. I do believe that.

I would, however, give anything to be able to just keep them with me and protect them from everyone and everything. To not feel like I need to explain to complete strangers why they do the things they do. But this is the world we live in, where people take one moment of your life in a waiting room or at a playground or at a barbecue and form a judgement on you and your kids without knowing anything about you.

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34 Comments on “Autism is a big bag of crap.”

  1. 1 Chelsea said at 12:04 am on July 20th, 2011:

    I’m so sorry, Erin. Hang in there! You’re an amazing mama to those boys. It does suck, the world we live in, the quick judgments. Keep doing what you do, being open and honest about autism. Awareness is a great thing!
    Chelsea recently posted..New happenings.My Profile

  2. 2 erinclot said at 2:07 pm on July 22nd, 2011:

    I try and show both our good and bad days, we're just having some bad days here. Thanks Chelsea

  3. 3 Jane without an E said at 12:06 am on July 20th, 2011:

    Having just spent a little over two weeks with my autistic nephew and seeing the daily struggle, I bow to all families with different needs children. I hope you find an answer sooner than later.

  4. 4 erinclot said at 2:08 pm on July 22nd, 2011:

    It's kind of a never-ending battle, as soon as you figure something out, something new pops up and it starts all over again. Days like this I just want a magic wand!

  5. 5 sooobig said at 3:21 am on July 20th, 2011:

    This is such a great post. People suck. I am so sorry that you feel judged. As common as autism is, you would think that more people would be educated and accepting about it! Hang in there.
    Crystal http://www.SoooBig.WordPress.com

  6. 6 erinclot said at 2:12 pm on July 22nd, 2011:

    I think people are scared to "go there" with autism- because it is common and there is no cure and it's a struggle no one would wish for. Which is why people are perfectly happy being in denial about it. It's scary and it doesn't have an end. There is no growing out of autism. You can treat it, but it's always going to be there. Thanks for the encouragement!

  7. 7 Aimee said at 6:34 am on July 20th, 2011:

    Stay strong. Yours kids picks you to be their mum for a reason. You are doing an amazing job

  8. 8 erinclot said at 2:13 pm on July 22nd, 2011:

    If they picked me I'm sure they are kicking themselves over that one 😉

  9. 9 Laura P said at 7:02 am on July 20th, 2011:

    I get it Erin. I do. I think many of us parents (whether the kids have asd, have some other sn, or are just "typical" kids) feel the same way as when you said:

    "I just want people to know without us telling them. I want people to figure it out and then just do what we say. I don’t want to be questioned when we make decisions. I don’t want to have to explain myself. I don’t want to know what so and so said or what someone else suggested."

    I know I've felt that way. It happens more often than I would like to admit.

    Here's hoping that your boys will start taking the melatonin again for you. I honestly think there was something in the air last night as it took my L (4) quite a while to calm down and go to sleep last night.

  10. 10 erinclot said at 2:15 pm on July 22nd, 2011:

    We had a better night on Wednesday and last night was a bit crazy. We'll keep trying. As far as i know it's the only thing that I've heard of giving kids. It is cooling off, maybe that will help.

  11. 11 Yogidad said at 7:50 am on July 20th, 2011:

    I couldn't agree more. I don't want them to be judged or labeled and when you have to tell people that they are on the spectrum, they automatically get treated differently. I get the same thing at work. Its always a hushed tone. "how are the boys doing?". they aren't dying and they are still awesome kids.

  12. 12 erinclot said at 2:16 pm on July 22nd, 2011:

    I'm sure there is a note of not wanting to point out the kids because they are different, but you talk about them like any other kids. And yes, they are pretty awesome.

  13. 13 Bonnie said at 8:18 am on July 20th, 2011:

    You are right, it is a big bag of crap.

    I couldn't agree more. I don't have much in the way of advice or words of wisdom. Just wanted to say, I'm living that same life. If it makes you feel any better, my boys are 6 now and they are each other's best friend, although one is definitely more affected than the other. The less affected one is soooooo worried about his brother, when he has a meltdown. But I see a definite relationship between them that is very special. It may just take a little more time for your boys.

  14. 14 erinclot said at 2:18 pm on July 22nd, 2011:

    Thank you. Thank you for getting it. And thank you for the wisdom, i will keep hoping something blossoms between them, and maybe one day even with their little brother!

  15. 15 kimi said at 11:43 am on July 20th, 2011:

    I can totally relate and feel this way often. My almost 3 y.o. is blind and has his own bag of crap issues to deal with. Reading this–I so felt like I was reading about him and how I feel.

  16. 16 kimi said at 11:45 am on July 20th, 2011:

    We also use melatonin and I'm dreading the day he fights it. Because we just know he will.

  17. 17 erinclot said at 2:23 pm on July 22nd, 2011:

    It kind of makes me feel awful, like it must make them feel weird and they don't like it. It just tastes sweet, so it's not like it's bitter or anything. Sorry about your struggles. I know everyone has their own road to walk, I think it helps to know we're not all alone in this.

  18. 18 Mandie said at 1:18 pm on July 20th, 2011:

    I think parenthood in general is full of things we never dreamed or imagined…both good and bad, indifferent, surprising, or whatever else it could be. And yes, the world does suck really bad sometimes.

  19. 19 erinclot said at 2:24 pm on July 22nd, 2011:

    Yes, some days just plain suck. It makes the good days even better.

  20. 20 Shannon said at 2:18 pm on July 20th, 2011:

    Thanks for sharing … my 2 year old son has not been diagnosed with ASD but he does have a lot of other issues to deal with. So many people just don't get it , I can explain his issues til I'm blue in the face and they still say he is being a spoiled brat. Just keep doing what you are doing and be the best momma you can be 🙂 I wish you luck with your boys!!!

  21. 21 erinclot said at 2:25 pm on July 22nd, 2011:

    That's terrible. People just don't get it and instead of learning, they judge. Not fair to you, not fair to the kids, not helpful to anyone. Stay strong Mama!

  22. 22 Janine said at 2:35 am on July 21st, 2011:

    In a different situation, it might be kind of funny that they figured out you were 'drugging' them. Ironic even.

    I feel you on wanting people to know things without having to tell them. I feel like all health issues are that way, at least to me. I hate talking about bad stuff, especially for the 75976980723 time.

  23. 23 erinclot said at 2:27 pm on July 22nd, 2011:

    I think it makes it harder that they are cute little 2 year olds. They look totally normal. It's not until we have to start kid wrangling or directing them on every little thing, combined with being non-verbal…we get about a 5 minute reprieve before we get the look. I am glad I am a homebody

  24. 24 alicia said at 11:26 am on July 21st, 2011:

    boy could i relate to this one! just when i start to feel good about an accomplishment, something developmentally resurfaces and sets us back. thinking of you!

  25. 25 erinclot said at 2:29 pm on July 22nd, 2011:

    I know it's going to happen again and again and we need to be thankful for the good days. It's tough though. It's like you can never get *too excited* because you never know what is next or how long something will last. Thanks Alicia.

  26. 26 Chrissa said at 5:32 pm on July 24th, 2011:

    Amen. I don't have any magical words of wisdom, and I can't say "Oh, I know exactly how you feel", because it is such a different journey for each ASD family. But I DO understand where you are coming from. I have been through so many stages of grief/searching/letting-it-be in the past 3 years with my son since his diagnosis. I don't know if it is a comfort or not, but you are not alone. 🙂 I just found your blog, and look forward to reading more!

  27. 27 erinclot said at 8:46 pm on July 24th, 2011:

    Thank you for that. It\’s nice to know I\’m not the only one without the magic words to make it better. It\’s nice to know I\’m not alone, and it WILL get better…at some point.

  28. 28 Katie Spencer White said at 5:12 pm on September 27th, 2011:

    My 11 year old has Asperger’s and I had a complete bag of crap moment today, lol! I can laugh about it now, but 13 hours ago, I wanted to scream…and cry…and run away. Because of our son’s sleep/anxiety issues, we’ve had to take him out of public school and homeschool him and you are so right about everything in your post. Sometimes I get tired of the hushed “how is he?” question, or having to explain why he doesn’t reply to his friends’ emails or why he can’t get on the phone and thank his grandmother for his birthday present or meet with the rest of the family at a restaurant for a family celebration or do any of the other things that everyone else takes for granted. Sometimes I have to remind even myself that he isn’t a spoiled, uncaring person (like today when his baby brother was crying and he sat there ignoring him, or kept calling for my attention when his brother was asleep in the stroller), he just doesn’t get it. But because he “looks normal” people think he should. Incidentally, we put our son’s meds in his morning OJ – can you put melatonin in juice? It works a treat for our son (who is none the wiser).

  29. 29 I love you, I hate you. | The Slacker Mom said at 9:41 am on October 10th, 2011:

    […] After the boys go to bed every night it used to be a mad dash to get some clean-up done before we both had a little time to do “our” stuff- for Yogi Dad that meant yoga, for me that meant various blog related things. Most nights I would be up until well past 1am. […]

  30. 30 Daniel said at 11:34 pm on November 4th, 2011:

    Oh no, you're kids have autism! Woe is you! Here's the deal – I have autism, and you have no right to complain. We are not diseased, we are not in need of help from ablelist neurotypicals, we are just as smart and as able as you but we got about things in different ways. Stop complaining because you're too too fucking lazy to get to know your kids.

  31. 31 erinclot said at 11:41 pm on November 4th, 2011:

    Hey Daniel- my kids are 3. I'm allowed to have moments where this feels like shit. 99% of the time we truck along fine but sometimes there are cracks in the facade. Get over yourself.

  32. 32 Toni said at 9:44 pm on November 20th, 2011:

    Wow, Daniel! Really?!! Are you the parent of an autistic child? Do you know what it's like to see people stare at your little love in disgust? Do you know what it's like for your little one to not want to be touched by you, head-butting you instead? Do you know what it's like to long for the day when your child speaks? Do you know what it's like to be ecstatic when your ASD child makes the tiniest of improvements only to take two steps back? No? I didn't think so! In a way your post gives me hope in the fact that my ASD little guy will be as eloquent as you someday… I just hope he's not such a jack-ass!

  33. 33 erinclot said at 9:51 pm on November 20th, 2011:

    Thanks Toni. I was thinking I overreacted there but no, I don't think so. I don't think anyone can know what it is like to be the parent, the effort and the heartache the goes into navigating this world for them so they don't get hurt or judged- not even the kid.

  34. 34 Freda Hunter said at 5:13 pm on December 11th, 2011:

    Do you know what it’s like to long for the day when your child speaks? But because he “looks normal” people think he should. I have been through so many stages of grief/searching/letting-it-be in the past 3 years with my son since his diagnosis.

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