Autism Sucks {Can I get an Amen!?!}

     I'm not sure if it's just how it goes from time to time or if it's just the eventual ware that home school is bound to show on you but things with our little autistic bundle of joy have been....less than rosie this last week!  With Jayden we have good days & bad days. Good days where he is on point, ready to learn, inquisitive, & at the top of his game. Bad days are days where he should maybe come with a black label warning: "The Surgeon General Warns: Bad Autism Days may cause a parents premature death, premature gray hair, & an over all wish to jump in front of a mack truck" Now that may sound harsh but man this week was hard! Stemming, no memory or ability to retain any information, the attention span of a moss covered rock, & crying at the drop of a hat. Emotions are all over the place, non existent, or ass backwards! Tonight as I sat by the bath tub washing him I couldn't help but wonder if I will be sitting in that same place in 5 years. Will he ever be able to remember or have the care to wash himself, pick out his own cloths instead of accidentally squeezing into his 4 year old brothers clothes that he happened to find first, or will he ever be able to just be a some what self sufficient adult. Don't get me wrong, I'm sick & over protective enough that I'll be okay if he needs to live with us forever but that doesn't mean I have to be happy about it does it?
     I know this seems like a pitty party for dad kind of blog & it is a little bit but I've come to a realization. A secret for parents of autistic kids...come close....are you listening....This shit is hard man! & sometimes it sucks! But hey, what the heck do I know about it? You're reading a blog from a guy who cleaned kids rooms & gave a 9 year old a bath dressed like a the whitest, most Jewish, gangsta rapper on the face of the planet.



Thanks for reading!

19 comments:

  1. My son is 15, and I find myself doing the same chores and asking the same questions. How far can he go? I don't know, and it seems the only way to find out is to keep working towards maximum independence. So I think you're dong all the right things, and you're Pretty Fly for a Rabbi:
    http://www.youtube.com/watch?v=0XNYh9Fo1UY

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  2. Word. I try to explain this to my mother who only sees her grandsons as perfect little bundles of joy. These bundles make me want to put my head through a wall on a fairly regular basis. They are awesome and wonderful and I love them more than anything but yeah, autism is HARD.

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  3. tell me more about the NWA songs on banjo - you need to share. Oh yeah - yesterday was fun w/ 6 year old twins so off the chain at speech therapy (yes, we get it on sunday) that even an iced coffee from starbucks did little to ease the pain. I can't say it gets easier, it just gets different.

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  4. I feel your pain. My guy is only 5.5, but the bathing, dressing, constant reminders of the process of putting jackets and shoes and hats and mitts and such on just to go outside. I've labeled his drawers with pictures of what clothes are what, so at least he can pick out his own PJs now. I also laminated a hand washing and potty procedure and put them in spots by the toilet and sink in the bathroom. I've made up one for bath time, but I haven't gotten it laminated yet. I'm lcuky in that regard, we do the same thing in the tub every single night, so that routine he's got down, now he tries doing it himself to prove he's a big boy. Hang in there, hug your wife and kids, and know it does get better and every day is a new challenge, it's just a matter of getting through it.

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  5. Sorry you had such a bad week.
    I certainly have those as well.
    As you well know, living with autism is like being.on a rollercoaster, so maybe this week will be an "up" week ;)
    Here's hoping, anyway.

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  6. My son is just about 5. I wonder the same thing. I wonder if he will be able to get out in the world and be self sufficient. It is a raw emotion of fear. He can't bathe himself yet. You never know what will come with time. Some breakthroughs come out of nowhere. :)

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  7. My two boys are 7 & 12, the 12 year old finally knows how to turn the shower on by himself (without the risk of getting burned ;-) the youngest I have to drag in to the washbin to get clean, he's affraid of the shower (I don't have a bathtub) and I have to sit with him all the way through blowing bubbles from the spiderman bubblethingie... When I look at the oldest I see things can get better, but it takes sooooooooo much energy and patience... But still both have made so much progress, I believe one day they will be able to take care of themselves (maybe I just have to put them in the shower or tub everyday or so till eternity...)

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  8. My son is 15. I wash his hair and face, then he dabs here and there with a washcloth, and soaks in a bubble bath until the tub is full. We make up for thoroughness with frequency. I still have to adjust the water temperature, but at least now he can tell me if it's too hot or too cold with about 80% accuracy. (He tends to confuse opposites.) I have to turn the water off because it would overflow, and he would just leave it running. As soon as the water stops, he starts yelling that he is done with his bath, and asking what to do next. If I repeat the question back to him, he can usually come up with the answer (drain the water, get out of the tub, dry off with a towel, get dressed) and do most of it (he's not so good at drying himself) but he still asks for a prompt for each step every. single. time.

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  9. I wish I looked that gangster when I'm having a crap day! Actually, I wish I looked that gangster every day, at all times!

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  10. My daughter was not dx'd with Asperger's until she was 12 1/2. That summer we hospitalized her because NO ONE could figure out what was wrong with her! I truly believe this is the correct Dx. The more I learn about Asppie's the more I see her! Her asperger's is mild ( Whatever that means) , but do tell, WHEN will she rememberto bathe, put on clean clothes, clean her room, etc. She's now 16 and going to college soon. A therapist told me there are people in place to help her. She will pass of that I am not concerned. She's brilliant and loves to learn! But I will be a state away and will not be able to remind her to take her meds to help with irritability or to take a bath, etc. I get worn out thinking about it! :P

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  11. It can get better - my son is now almost 11 (Aspie) and he is able to take a shower completely by himself. He can also get dressed now, although he will bypass buttoning + zippers. He wears a school uniform, so it makes it easier for him to pick out his own clothes. I am not saying that all parts of it will get easier, but a lot of parts have gotten easier for us. I completely understand the "good" and "bad" days - we try to focus all of our energy on the good days and not to dwell on the bad. He is receiving ABA therapy at home + school, OT, brain training and is also in social groups, and these services are helping him little by little. Keep your chin up, you are doing a fantastic job.

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  12. I think you've highlighted two of the thinks that irk me most about autism.

    1) there's no telling what causes the low points, particularly when the kiddo doesn't communicate well. is it lack of sleep? something he ate? something someone said to him or that he saw? grrr.

    2) it's a spectrum and there's no way to tell what your kid is going to be capable of. maybe you'll be giving baths at 23, or maybe they'll be in college.

    you've just got to keep hoping and making the best choices you can with what you know. celebrate the bejeezus out of the good times.

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  13. Great post! I have felt the same way over the years. My son was 11 years old before he started showering by himself. I started refusing to bath him when he was 10 and he would get in the shower and not soap up and then get our still stinky so I would usually give in and help him every other day so he wouldn't be totally stinky. I finally solved the problem when he was 11 by making him go back in the shower if he was still stinky. One night he came out of the shower stinky and I sent back 4 times before he decided he better soap up. I never had a problem after that. The trick has always been knowing when he was ready for that next step and when he really needed my help. Hang in there. You are doing great!

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  14. Glad I found this blog, because I feel alone, and then when I read Asperger's parenting blogs and comments I realize things are tough all over. My son is eight and I still have to wash him. As Petra said about her son in an above comment, mine's afraid of the shower. I wonder when he will learn to bathe himself. Also, why does he have no desire to be more independent in general? Do other parents notice an almost total lack of "I can do it myself" among their kids who are on the spectrum?

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    1. Do other parents notice an almost total lack of "I can do it myself" among their kids who are on the spectrum?

      I couldn't agree more!! I noticed this early on and my husband just thought it was because I was helicopter parenting. Our son is 9 and got diagnosed at 8. He showers alone now but we have to send him back to try again if his hair is still soapy or doesn't smell like shampoo. He doesn't have body odor yet but I'm sure that is coming soon. Teeth cleaning is a big issue at our house.

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  15. I don't think that "I can do it myself" is entirely absent, but I agree that it is very rare in my son with autism vs. my NT son.

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  16. I have been extremely fortunate. My 19 year old Aspie son found a girlfriend when he was 15. She refused to kiss him if he didn't brush his teeth. She also reminded him to shower occasionally. It's amazing what young men will do for a girlfriend that they won't do for a parent! The two of them are still together. I have a constant fear of them breaking up. Will he ever shower or brush his teeth again if they break up? If he doesn't, will he ever be lucky enough to get another girlfriend who will take on this responsibility? All I can say is that it does get better, but the worry never really goes away...

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  17. AMEN!! Thank you for sharing. I have homeschooled my 11 year old, since he was in second grade. I found after the first 3 months of misery, we needed to change what school looked like. Our goals changed. At first I was getting tables and chairs thrown at me, papers would be totally scribbled on or torn to shreds, screaming fits all because he was so frustrated. So we had to make different goals. We lowered our expectations on what would get done each day and focus on proper behavior, and watch if for bad days. On bad days, we would find a documentary to watch and then we would talk about it, or act it out with action figures or build something with legos. My son wasn't doing well with writing (or drawing) so we would let him draw stick figures to show something that demonstrated he was paying attention. we used legos and other things he enjoyed playing with to do education. At the time star wars was HUGE for him, still is, but he has learned that there are other things worth being intensely interested in. One thing that also helped was when I started reading living books to him. These were way above "his" reading level, but he ate them up! Now he devours books. Hang in there.You will find that homeschool, even with those horrid bad days will be way more rewarding than expected. You are a great dad.

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