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Monday, February 15, 2016

Top 10 Mistakes Autism Parent Newbs Make

Oh Newb, I love you.  I get you.  I see myself in you in many ways.  I've even written about you all before in this: A letter to the New Autism Parent

But we need to talk.  There are some common themes that keep coming up that you are laying at my doorstep.  I don't know what I'm making for dinner tonight let alone what I'm doing when it comes to all this autism stuff.  Now sit down and let's have a "Come to Jesus" conversation, shall we? Because you are really wasting a lot of energy freaking the Hell out. No, you are and I know it cause I've done it.  I made this a list.  Parents love them some lists.  

1) Not doing your research.  Many of you write asking about how to get an autism service dog or how to manage a GF/CF diet.  That's great but I have to ask, why?  You want to feed your kid a certain diet?  Did you just hear a sound bite or did you take your kid for allergy testing?  Same with the dog thing?  What is it you think or need that dog to do?  Are you aware of the extra work taking in another living creature into your home will be?  Even though they are a "working dog"?  Both of the above mentioned things are also expensive as all get!  So you best choose wisely before you leap in.  Read up on this stuff before you commit.  Learn from other autism parents' empty wallets. 

2) Thinking there are autism milestones.  Newsflash,your kid sets these on their own.  Stop comparing your kid!  It doesn't matter when my kid talked.  You will drive yourself freaking insane if you ask every autism parent you meet that question.  You will also drive them insane and let's face it, we don't have that much wiggle room there to go.  So let's not rock that boat.  This autism tenured parent wants to remind you that even if your kid never speaks, that doesn't mean they have nothing to say.  They are just not going to say it in the way you expect.  

3) Chill the eff out about the potty training.  Like right now.  Especially if you are comparing your four or five year old to the neurotypical kid across the street.  Come on now. You all know better but there you are getting hung up on it.  Let it be known as I type this blog I have another set of sheets in my washing machine right now.  My kiddo is eleven if that helps put that in perspective for you.  Am I thrilled about it? No.  But it happens.  So there you go. 

4) K.I.S.S. "Keep it simple, stupid."  When talking to your kid, keep it brief and to the point. Remember, communication isn't just them being able to say stuff.  They have to process it too.  Keep the sentences and directions clear. "First this, then that." stuff works for a reason.  Cause it's clear as feck. 

5) There's a difference between a meltdown and a tantrum.  Which you can read about here: Meltdown vs. Tantrum You have to accept once a meltdown starts, you just got to ride that shit out.  Keep them safe because there is no turning that off on a dime.  So just buckle up and know eventually it will end. I get it. You try to talk them out of it.  Nope.  Can't be done.  I forget that too a lot.  

6) Not asking for help.  Now WTF is with this?  You don't win a medal in being a martyr.  Remember when you told folks about your kid getting diagnosed and they said stuff like "If there's anything I can do, just let me know."  Well now it's time to take them up on that shit.  Seriously, you will be glad you did. 

7) "My family/friends don't understand our life."  Believe me. I get it.  I still deal with it.  There's only one solution for this problem. TELL THEM! Cause I'm betting you didn't fully get what was ahead of you at the start of all this.  I still don't know most days but I know opening my mouth will always work when I tell someone why something won't work for us.  I can't get mad at someone who doesn't live with it that they didn't know something.  I can get mad at myself if I didn't advocate for my Kiddo and tell them.  That's on me.  

8) It's not a case of fixing it or them.  If anything, it's a group effort.  You included.  You all learn as you go.  Collectively.  

9) Not turning off autism now and then from your life.  Yes, I told up top to do your research but you have got to learn when to walk away from Dr. Goggle and crew.  Autism isn't cutting you a paycheck to be it's bitch.  You want to flake out and watch "The Bachelor" one night instead of reading a Temple Grandin book, I do not judge.  I'm betting 90% of your social media feed are memes, stories and blogs like this one.  You deserve a break.  Consider reading this one post your autism work of the day.  

10) Cheer up. Seriously. I came to the conclusion a few years back that if I was going to get laugh lines on my face, I might as well have fun earning them.  This doesn't mean I'm in a permanent state of HAPPY.  I use my humor to cope.  It's survival and it's a skill I am gladly teaching my Kiddo as well.  Cause he's saddled with a couple of neurotypical parents who don't fully understand the pure joy that is listening to "The Lion Sleeps Tonight" for the 8355 time that day.  I joke and find the silver lining.  The mood is contagious. If I'm a miserable git.  Guess what he's going to be?  

So if we ever meet and you see me giving you some side eye, it's not because I think you are doing it wrong.  I just hate to see anyone making stuff harder on themselves than it needs to be.  Newb, I've been there and I continue to be there.  

Autism with a side of side eye.  

30 comments:

  1. I love this! My son is 3 1/2 with severe autism/cognitive delay and my daughter is 19 months with a moderate to severe risk of ASD diagnosis (whatever that means), and I'm still new to all this. I'm definitely well-past the freak-out stage (most days), but I'm definitely guilty of #3 and #6! Thanks for this!

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  2. Perfect! Its so easy to get overwhelmed in all this and without smacking someone and saying "STOP!" you did it right! Way to go MommaFry! I have to remind myself of everything you said on a near daily basis. My son is 8. Still a struggle. Lots of Hugs!

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  3. Thank you for this. I was thinking a lot of this stuff, but then I think, what do I know?! Thanks for the back up.

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  4. I love you!! And this is really perfect for all parents of children with a variety of special needs. Thank you!

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  5. You shouldn't discourage new autism parents from trying out GF/CF diet. This diet actually works for children with autism who have GI issues. Yes, this diet is very hard and expensive, but it's worth a try. Autism Biomedical treatments have actually recovered some children from autism. As an experience autism parent, I disagree with several things on your list, but you really shouldn't discourage parents for doing their research and seeking out special diets.

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    1. Actually, I didn't. I said to do your research on it. Not just jump in blindly. Start by doing allergy testing. Which is what I suggested.

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    2. The autism GF/CF diet has nothing to do with allergies. It helps with the GI issues which causes behavioral problems. Special diets and biomedical treatments should be discussed with a physician who specializes in this. It's worth a try since some kids can recover from ASD.

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    3. The service dog is great for kids who elope. A service dog can keep a child safe from running away while the parent is in the bathroom or sleeping at night.

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    4. And again, this goes back to my first point. Do the research. There are also different types of service dogs. Heck, even different types of service animals in general. It's not elopement help that they provide. Not all kids with autism have elopement issues. So it wouldn't make much sense to lay out 20 15 to 20 grand on dog that is trained in tracking if your kid does not have that issue. Also, there are huge concerns with depending on a dog for the elopement issue as the child is teethered to the animals. Many kids and dogs have been injured by this as not all dogs are truly trained well enough to handle a bolting child. Again, this is about research. Not just grabbing on to a soundbite.

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    5. I didn't see anything in this article where the author discourages any diet. More just to not make decisions based on sound bites...which is EXCELLENT advice.

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    6. Dogs are pack animals when you teather your child to the dog you put the dog higher in the pecking order. Dogs bite their puppies to teach them. I have a service dog that failed out of a program for the blind. I have to work with the dog and child so they both know what they need to do. People in public constantly think it is okay to come up and pet the dog when she is working. The dog is like an extra kid.

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  6. You should add: Don't blog about how sad you are and how difficult it is. Being involved with adult autistic advocates I'm a NT mom of young adult autistic), those "poor me and my sad child" blogs make them (and me)crazy. Nothing is worse than stating publicly that you are sad and disappointed about not having a "normal" child. Yes, it's difficult for parents, but the child is aware of this negative projection more than families realize. In this age of vomiting all thoughts and feelings online to strangers about our personal lives, there seems to be a serious lack of private contemplation or the possibility that maybe we don't really want to hear all this stuff all the time, especially when so entrenched in finding "cures" at the expense of harming the child (bleaching, etc)....

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    1. Hmmm, maybe you haven't read some of my other posts then. LOL It's not always a bed a roses here at French Fry Inc. ;-) A friend of mine once said to me "Feelings are information. Not instructions." It's something I remind myself when I'm not having the best time of things. I think it's healthy to acknowledge the good, the bad, and the ugly. It's what you do from that moment that really counts.

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    2. P.S. But 100% agreed with you on the "cures" at the expense of harming a person. That shit is scary.

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    3. I'm an autistic mom raising two autistic kids and I agree to a point. I'm so, so glad my parents mostly hid how difficult it was to raise a kid like me, especially when it came to taking me out in public when I was young. The few times their frustration and embarrassment slipped through really hurt. But I also know that if I could never share how hard it can be sometimes when every single miniscule detail of daily life is 10 times harder than it is with NT kid, I would break down under the weight of it all. I'm glad there are people who are willing to share the hardships along with the joys. Though I absolutely agree there are mommy bloggers who put their despair on constant display and say deeply private and disturbing things about their kids that no parent should share so widely. The child has a right to privacy and respect.

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  7. You are right on! Love your blog. Great writing!

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  8. Loved this, and the past few years my personal mission has been to embody #10. Don't always get there but I try! Thanks for this!

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  9. I love this post because it's kind of like a kick -- well, maybe more like a nudge -- in the pants for parents. Yes, having a kid with special needs is hard, but it's not horrible. This is no-nonsense advice that is better than most I've read by the so-called experts.

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  10. amazing post i got a lot of infos and advices from this article really

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  11. Autism isn't giving you a paycheck to be its bitch. This is so spot on. I've worked in this field for years prior to having a child on the spectrum and this is seriously the best advice. Ever.

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  12. Thank you for writing this. I am a newb of a 3 1/2 yr old who was diagnosed with ASD a few months before his third birthday. He developed typically, and then lost all language and social engagement over a period of a year or so. I am totally guilty of asking every single parent when their child spoke. I just miss his voice so much, but I am finally accepting that progress takes time, and the progress he makes might not be what I wish for, but will be wonderful all the same. I also wanted to say thank you for calling out the diet/dog/alternative treatments before doing research. I hopped right into a GFCF diet for my son because several parents I had met really advocated for it. While I am so happy that it worked for their children, and as much as I wished it worked for us, it absolutely made no difference for our son, and he continued to regress. This added to my stress and anxiety be I had false hope that as soon as he was detoxed, he would recover, and quite the opposite happened for us. We recently allowed changes to his diet, and all of us are happier for it. We work really hard and try anything, but don't like to feel judged or wrong if a diet/lifestyle didn't work for our child. I happened upon your blog recently, and am grateful for your positivity and your humor. You really do just have to laugh sometimes. Thank you!

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  13. I love your blog and posts, I do agree that some people go too far with the intimate details of their kids life but I have never felt you did. The whole point of your blog I think is to raise awareness and advocacy for parents and children alike. If no one told how it really was then NT people would still look at Asd parents as abusive or bad!!! When it comes to a child's well being I say let's all get involved and raise our voices.

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  14. Regarding service dogs, I completely agree that research and asking the questions are so important. Please realize there are multiple options for obtaining a service dog. We are owner training Gracie Lou, whom we got from the shelter (2yr old lab/terrier). She and my daughter bonded instantly and her training is going great.
    Another option is using a trainer to assist with owner training, which is so much cheaper and more personal than a program purchase.

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  15. Regarding service dogs, I completely agree that research and asking the questions are so important. Please realize there are multiple options for obtaining a service dog. We are owner training Gracie Lou, whom we got from the shelter (2yr old lab/terrier). She and my daughter bonded instantly and her training is going great.
    Another option is using a trainer to assist with owner training, which is so much cheaper and more personal than a program purchase.

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  16. Just found your blog. This one post has me hooked. I'm so down the rabbit hole of autism right now. Seriously...I have a service dog application printed out and sitting on my table. My almost 5 year is not potty trained. I wonder if a diet change would make a difference. The list goes on and on.

    As a side note after reading some of the comments. I do have to say that while it is easy to post all the emotionally gross stuff about autism on social media. Sometimes that provides some catharsis that people need. Yes, perhaps we should all be more mindful of what we share and it's implications for the future. But generally speaking, i think we're all just trying to do the best we can.

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  17. I love this and I agree with EVERYTHING! I flipped my shiz when my son was diagnosed-I researched and researched and researched. Then I took him to a VERY VERY EXPENSIVE Dr. who tested him for every allergy known to man. I still don't understand all of the results, but it seems as if he has a slight allergy? We went gluten free, caisson free-Pretty much flavor free for six months. Everyone in my family of FIVE went on this God-forsaken diet because we thought it would benefit my son. We were ALL IN. It didn't help. But you know what-we tried.
    I have traveled two-three hours per day every day of the week for therapy (for him). I have fought with the school district. I have gotten an advocate. Oh, and did I mention we have NO family help??? No? Well, there it is.
    I don't post sappy "feel sorry for me & make me a casserole posts" but I don't judge those who do.
    Being a mom is hard enough. Throw autism into the mix and everyone suddenly has an opinion. Did you vaccinate? What happened? Diet? No diet? Do you jump on one leg every night while juggling apples facing the East? WTF?
    Just let everyone be!!!
    Oh, and did I say I loved your advice???

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