Tuesday, July 19, 2011

Domestic Enemies of the Special Needs Mommy

This post is brought to you by our very good friend Stark.Raving.Mad.Mommy who is awesome and amazing except sometimes she seems to share a brain with Lydia.  Her blog is incredible and hilarious and if you haven't read it, you really should. She is one of our very best bloggy friends and we're thrilled to share this with you.

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 I wrote about my little corner of Mommyland (which is called either Special Needsville or Yes My Child Rides the Short Bus Damnit) last year in a post called A Rant from Special Needs Mommyland. However, I am still fielding jackhole questions from random muttonheads, so apparently I need to be even more specific about the Domestic Enemies of the SPECIAL NEEDS Mom. Do you know some of these people? Feel free to share this post with them. If we all work together, we can cure Jackhole Comment Disorder in 2011!

The Nosy Parkers
I was well-familiar with the Nosy Parkers before I even had Little Dude. My first two babies are twins, and believe me, people have no qualms about asking questions like "Do twins run in your family?" when what they really mean is "Did you do fertility treatments?" Which, in turn, actually means "please tell me about the most emotionally difficult time in your life so I can compare you to Octomom later when I tell my friends about it." (For more about jackholes and multiples, see the excellent post Domestic Enemies of the Multiples Mom.
Now that we have Little Dude (and now that my twins look so different that no one thinks they're twins), the questions have changed.

How about I just answer all the questions right now?
  • No, he is not "just like" Rain Man.
  • Yes, I know he doesn't "look" autistic. (I'm not sure what people think autism looks like. They seem to think this is some kind of compliment. It's actually just confusing.)
  • No, praying really, really hard will probably not "cure" him.
  • Yes, I know he's really cute. It turns out the Special Needs Fairy doesn't care.
  • Yes, we do discipline him. But no, we're not going to "spank the autism right out of him."
  • Also, please know that if you ask me if I took antidepressants while I was pregnant, I may punch in you in the throat.
The Parenting Experts
Little Dude is five, and not toilet-trained. He often needs to be carried; usually this is because he's overwhelmed by his surroundings. The Parenting Experts like to ask back-handed "helpful" questions, like "Isn't he getting a little big for Pull-Ups / being carried / having a meltdown on the floor of Target?" The thing is, he's autistic, not deaf. And while he's emotionally 36 months old, academically he's seven years old. So he knows what you're saying, jackhole. And you putting pressure on him to change things he has no control over? Does not help us one bit.

Here's a pro tip: If you see a kid who looks "too big" for diapers, believe me, the parent a) already knows his/her child is in diapers; b) is not lazy (it's actually a lot of work to change diapers year after year); and c) has already tried every suggestion you have. Telling us your 18-month-old child potty-trained in two days because you used a sticker chart is not helpful advice; it's showing off. Shut. Up.

Then someone says, for example, "Isn't he getting a little big to be carried?" they're actually saying "put that kid down and stop spoiling your child." The thing is, when I'm holding my freaked-out, 50-pound child while simultaneously pushing a grocery cart, it's not really the best time for me to stop and explain about autism, sensory integration, frustration tolerance and how overwhelmed and terrified he is right now. I'd hand out little cards to explain it, but I'd need a third hand for that.

I honestly don't understand why anyone gives a crap if, when, why, or how long I carry him. It's not like I'm asking the Random Muttonheads to lug him around. It's also an excellent upper-body workout for me, and Maude knows I don't have time/money to go to a gym. And yet, it inexplicably bothers some people tremendously to see me comforting my child in this way.

A family we're friends with has a son with microcephaly and ataxia (loss of motor function). Because he's obviously profoundly disabled, most people have the good sense to just shut the hell up. On the other hand, because he's obviously profoundly disabled, sometimes people think he has no idea what's going on around him, which isn't true. It would be awesome if you didn't ask about his life expectancy in front of him.

Speaking of horrifying comments, I also have friends with a daughter with both autism and a degenerative mitochondrial disease. They have been asked, "So how long are you going to let her live like this?" By actual nurses. Um, holy crap. On a less chilling note, these parents also constantly get the "isn't she getting a little big for pacifiers?" Really? You want to take away the one thing that, oh I don't know ... pacifies a child who's in almost constant pain? Bite me.

The Medical Experts
Autism is in the news a lot. Sometimes it's in the news because a celebrity has written a book about their autistic child and how he or she was "cured" through the use of prayer / ABA Therapy / chelation / organic zucchini / oxygen chambers / leeches / Eye of Newt imported from Transylvania.

The one thing scientists know for sure about autism is that it can't be cured. There are therapies that help, but no one therapy helps all autistic people. Lots of kids feel (and behave) differently depending on their diet; going gluten-free, for example, seems to help some families. The important take-home message here is that reading a review of a celebrity book in People does not actually qualify you to give me advice.

The Actual Medical Experts
Sometimes the actual medical experts are more annoying than the faux medical experts. I've read enough studies on things that might cause an increased risk of autism, thanks. Also, we've had enough studies that conclude that girls are slipping through the cracks of autism diagnosis. How about you get back to me when you've figured out a better way to diagnose them?

Also, a lot of medical specialists like to play a little game called Pass the Annoying Incurable Buck. Neurology would like you to see Orthopedics, who sends you to Psychology, who tells you to see the Feeding Clinic, where they tell you to see Gastroenterology, which sends you to Allergy, which recommends Neurology. By this time, Mommy needs to see both Psychology and a Financial Advisor.

The Starers
When Little Dude has a public meltdown, it's a spectacle. I get it. And if you're under the age of, say, ten, go ahead and stare. I'll just smile weakly and wave. But if you're a grown adult, you don't get to just stand there, mouth agape, and stare at my son. Yes, I know he's kicking the floor, crying, and screaming incoherently. The starers are thinking either "get control of your child" or "just go ahead and buy him the Snickers bar already." You know what those thoughts get you? A sure bet that your next child or grandchild will be the meltdown-havin'est baby evah. So good luck with that.

 "There's nothing to see here, folks. 
 Just a child having a meltdown.  Move along."


Next time you see a mom at Target with a melting-down child, here are some alternatives to staring: Smile. Nod knowingly. Offer the "we've all been there" commiseration. (On the other hand, if you see a child with a melting-down mom, you should do what Kate did.






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Don't forget to check out Stark.Raving.Mad.Mommy - she's awesome! 


(c)Herding Turtles, Inc. 2009 - 2011

87 comments:

  1. I have to add an enemy to that list.

    The family members who don't think that there is such a thing as (insert what makes your child special here).

    It's pretty horrible when I can't discuss what is going on with my son without hearing "oh, it's just a phase." It's not a phase that my son has been physically hurting himself since he was 10 months old anytime he gets super emotional.

    I could go on, but the rest of what I have to say about my stupid family would just end up like this.

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  2. You're never too old to have a meltdown in Target...I just had one last night!

    When there are no prices on things it should automatically be free! FREE DAMMIT!

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  3. LOVE and hugs to you, SRMM! You, and ALL parents who have children with special needs are my hero.

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  4. AHAHAHAHA!!!!! LOVE the part about punching someone in the throat. The only time I've ever been tempted to become violent over my kids' special needs is when folks ask me stupid ass questions like, "Is he like Rain Main? Oh, Big deal, my kid is ARTISTIC, TOO!"

    Seriously, you nailed it.

    And pass the buck with the docs? YES, YES, YESSER AND YESSEST.

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  5. We've been there done that, first with having twins. Next it was having twins and a singleton close together. Now it is having 3 small kids with special needs. "Yes I know my almost 6 year old should be shitting on the toilet. Looks like you went to medical school to become a GI? Should we switch from who we see to you?" and "I know you see my almost 6 year old making noises in the corner. He's trying to be a Wookie. Do you want to be a Wookie with him or join me on the Dark Side?" or the ever so popular "Yes, he is 3. No he isn't too big for the stroller. Yes he has difficulty walking. Do you want to carry around 40 pounds of kid for me? And I know you have no clue what he is saying. Perhaps it is for the best since he thinks you are crazy!" Life is fun with a 5 year old on the spectrum, another 5 year old with a language/motor issue yet to be discovered, and a 3 year old with a genetic syndrome.

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  6. As a special ed teacher I might print this and give it to some of my parents....well said.

    We just work with ADHD in my house....I think you're amazing for working with more :)

    God Bless!

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  7. Love this! I especially love the pacifier statement. I've had my 3 year old daughter's cardiologist ask when the pacifier was going and I turned to her and said "as soon as you promise she won't be in the hospital, poked, or prodded any more and won't need to be pacified." Shut her right up!

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  8. Adding my own:

    You don't outgrow cerebral palsy and/or PVL.

    "But he doesn't look retarded..." is just the wrong thing to say for a hundred reasons. He isn't. His disorder affects him mostly physically. Not that there would be anything wrong with having a child that was mentally delayed.

    There's also the funny looks when I make a big deal because my son crawled at 19 months old. It's a so what to everyone else but every milestone is a major deal for me. If you don't know what to say, just say "Awesome!" and change the subject.

    "At least he's not...." (again with the mentally challenged thing, or getting into stuff, or running into the street and so on)

    I also hate that trying to find info on his disorder only brings you to pages made by lawyers wanting a share of a lawsuit against the doctor, which I don't hold accountable.

    Even more than that, I hate the mommy wars. I have Neurotypical kids too so I've already had the people that compete over whose kid walks faster or knows more languages but now I get the competitions over whose kid is more screwed up, in an attempt for pity. I want to share my successes with my son without hearing about how someone else's kid has it worse. It's just plain sick to try to outdo someone's challenges with more of your own. Shut up and listen. Maybe you'll learn something, and if not, maybe you'll just avoid a punch in the taco.

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  9. Oh. My. God. I sooooooo hate "Pass the Annoying Incurable Buck" and you so nailed the feeling.

    You go with your bad self SRMM! Tell 'em all how it is!!!!

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  10. Love this post. I have a 4-year-old with Sensory Processing Disorder and a severe speech disorder. He look perfectly "normal", so I get lots of looks for carrying him in grocery store b/c the darn balloon lady is running the helium machine like there's no tomorrow and he can hear it from anywhere in the store and probably from out in the parking lot. He also is not potty trained, but no has dared comment to me about that yet. I have been judged for the way I handle meltdowns b/c ignorant people think it is a tantrum. He looks younger than he is, which helps with the judginess of people, who assume he's 2 and commiserate about the toddler years. However, those looks of compassion quickly change to horror when I share he is actually 4, thanks. And the medical "specialists", egad. You are right on. I love you, SRRM.

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  11. You read my mInd. My youngest is autistic and omg with the comments, the "will pray" for him to be cured is the worst... I actually think my kid is awesome why will he need to be cured? His amazing way to see the world is unique and he is sharing just a little bit of it with the ones that give themselves time to understand his view of the world and stop feeling bad for him.

    :) thanks for writing :)

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  12. I'm sharing this with everyone. EXCELLENT blog. I wish you all the compassion and smiles you deserve.

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  13. If has been suggested to me (from people that think anyone that does anything 'natural' is a freak. Why would you make anything from scratch when you can buy it at the store? That's their motto. So natural birthing is unfathomable and anyone that does so is ridiculous. Thats what modern medecine is for. This includes anyone that breastfeeds. Why don't they just buy formula instead of going through all that trouble) that my child is autistic because I chose the natural route of having her at a birthing center where inadvertently, they rushed her to a hospital after an hour of labored breathing. If someone else suggests that to me I think I will punch THEM in the throat (btw, within the next hour she was breathing normally and already off oxygen).

    It could be genetics, something happen in utero, the medication and treatments they gave her in NICU immediately afterbirth "just incase" she had an infection.

    Presumably, autistic people have roamed this earth long before a diagnosis existed. So maybe it's just within the human gene that this occurs sporadically.

    No one knows for sure but stop trying to point the finger at me for trying to do what I thought was best and suggesting I, single handedly, caused my child to be born autistic.

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  14. Oh yes Erin I totally agree! We even had a charity and foundation set up to help my son and other special needs children, and STILL, several people in my family don't think my child has autism, he's just a boy who has some "behavioral issues." If I didn't think they would either scream at him or spank him I would gladly send Sean over there for a few days so they can see what it's like to deal with those "behavior issues."

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  15. oh how I love this post. We have been all over the board on diagnoses. It is tiresome for us, add in a whole bunch of truly inconsiderate people with their "well meaning" comments. Makes me want to flip my freakin' lid. Yeah, yeah, tell me once more how your kid was potty trained in a weekend and I might lose it. We just had our three year training anniversary. I wouldn't trade it....she is the only precious I have.

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  16. At several times my severely autistic son has acted, well, autistic. One such event occurred at Mickey D's. Lil man climbed up the play place and wouldn't come down so I had to send sister up there to get him. The other kids were wondering why he was so different... my daughter's response- "he's an alien." Somehow this answer seemed to pacify them. :)

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  17. I feel your pain, sister. My daughter only has a tiny pink eye patch and people either act like it got there because we poke her in the eye with sharp rusty spoons daily or that the eye patch, itself, causes severe retardation. Jesus, people. It is a pink felt eye patch for a lazy eye, not a wooden leg!

    Julie
    ilikebeerandbabies.blogspot.com

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  18. It absolutely floors me what people will say to parents of special needs children. It is downright cruel.

    I will say that I have asked the "twins run in the family" question with no malice in mind. I just have twins on both sides of my family and that topic has always fascinated me. :D

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  19. My daughter has severe cerebral palsy, and for us, I'd add to the list people who grab their curious children's hands and forcibly drag them away, thereby teaching them that people in wheelchairs are to be avoided at all costs. Also, people who randomly come up and say either "Bless you" and feel her up or "In Ireland/Swaziland/Munchkinland they believe that children like this have the power to intercede for us in prayer." That's nice, lady, I don't think my kid feels like praying for you right now.

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  20. You hit the nail on the head with this!

    At least jackholes speak to you....even if it isn't helpful. People either back away from us or ignore us all together. People....she has Cerebral Palsy, not some contagious itch/scratch disease. It's amazing to me how many people don't realize that a specialized stroller isn't just another leg that you can bump into or we can pick it up to get over your damn chair that you can't be bothered to scoot in as a quietly try to get the stroller out of the too cramped restaurant or down the aisle where people seem to have started to squat.

    Oh...I also love the people who stare at me when I park in the handicapped space. She's 9, 45 lbs and is obviously in a special stroller. Can you explain why I would be putting her in her special car seat if I didn't have to? I actually had one lady stop, stare and then exclaim "Unbelievable". She then proceeded to take her grandkids and rapidly pack them in her van after I loudly told my son to put the bags in the back with the WHEELCHAIR. I'm happy to report I didn't get thrown in jail for beating the crap out of this lady since she hauled buns the opposite direction from me seeing as I was standing in the parking lot near my van waiting for her. I was only going to ask her what she was talking about. I swear.

    I also love when I tell someone that she has CP and their facial expression doesn't change at all. Nothing. It's like I said "She likes apples". Most people have heard of CP but don't actually know what it is. You mean to tell me you have no questions or comments or even a "God only gives you what you can handle" (which I've heard a million and one times, thanks).

    For everyone who might see a child having a meltdown or being carried or in a wheelchair, it is okay to ask questions. I personally have nothing to hide when it comes to my daughter. We have nothing to be ashamed of. We didn't choose this path, but we're going down it one day at a time. Next time you see a special needs mom, smile and say hi.....it'll go a long way. Believe me.

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  21. how bout these hates: (about my 13 year old son with DS):
    Is he high functioning? Oh, wait, I have his IQ testing right here in my bag! Would you like to review his results while we wait in the check-out line?

    "What's his name? How old is is?" I dunno, why don't you ask him YOURSELF!

    AND THE WORST EVER - THEY ARE SUCH HAPPY LOVING PEOPLE!

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  22. just pure effin genious! omg. im laughing with tears (happy/sad). also need to read every thing you ever wrote and when will i have time to do that???

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  23. Thank you. I too, have a 4 yo little man with SPD, and shades of autism. However, he's smarter than 91% of his peers, and it was just recently that he started getting dressed and expressing his emotions. Talk about huge milestone! My mil, thinks he's fine. Well thanks, you that sees him twice a year and have yet to witness the 90 min meltdown. Also, maybe she could explain, with her vast college educated knowledge, why he hits himself, loud noises make him lose his schmidt, etc........and then there's the neurotypical not quite 2 yr old brother. I have a house full of loud and crazy, but I'm lucky. They are otherwise healthy and beautiful.

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  24. My youngest has a gastrostomy tube (g-tube) now, but prior to that he had a nasogastro tube (NG tube). You can't see the g-tube because it's under his shirt, but the NG tube went into his nose and was taped with medical tape to his face. I got so tired of taking him out and hearing "What's wrong with him?" He was a completely adorable 13 month old little boy at the time-- NOTHING was wrong with him! Finally, one day I snapped-- this cranky old guy came up to me and asked, "What's wrong with HIM?" and I looked at him and said, "Nothing's wrong with him, what's wrong with YOU?" grabbed my son, and left. Sure left the old guy speechless!

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  25. Great Post & it helps remind me that as a Warrior Mom I am not the only one out there who thinks the general public is really stupid somedays! My 9 year old angel was born with Sturge-Weber Syndrome which is rare & presents with a birthmark that covers the right side of his face. The whole talking in front of him like he isn't there & doesn't understand you is what makes me the maddest!
    1. He is 9 a little behind but he understands you perfectly fine!
    2. NO - we did not for get the sunscreen, really!
    3. This was the best after his laser surgery he has little zaps all over & his face is swollen- "why would you burn your son's face with a cigarette?"- Umm yeah that is just what we did before we brought him out in public to go shopping & eat at McDonalds!

    I totally agree with people just not having a filter over their mouths- so wish I could carry duct tape with me & slap a piece over there mouths as soon as the first "Hey" comes out of their mouths!

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  26. Don't pet my son's service dog. Don't explain to your children that she's a "therapy dog" or "in training" or anything else when her vest clearly states, "Service Dog." We all went through a lot to be a graduated team. Treat us like one. Don't shake your head as I hoist my 6 year old into the cart at Target. Don't glare at me as I put the cart away in the cart return, then healthily walk back to my car in the handicapped space. Did you not see how long it took him to walk into the store?

    On that note, don't emit a little gasp when he falls, cries, and I say, "Come on, honey, get up. You can do it - just a little more," as he rises with a bloodied knee and sad look on his face. I'm not being cruel - I'm encouraging him. Because he's already fallen 50 times today and if I babied every one he'd be in the wheelchair you don't see in my trunk.

    Most of all, just smile and say, "What's your name?" That's his favorite question in the world.

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  27. AMEN on the "Pass the Buck" business. I eventually put my foot down and said, "Enough! We will not go to ANOTHER clinic and ANOTHER special specialist who will only refer us on yet again". I talked to people around town, found our own awesome psychologist, and that's where we've stayed. You'll be amazed to know that she actually used her own brain, her education, and her research to provide us with a diagnosis and therapies. Imagine that! All by herself!

    Also, the family thing is the worst. That is my biggest domestic enemy. If I hear, "He'll outgrow it" one more time, I will not be held responsible for my actions. My other fave is, "We're all different, we all have quirks. He doesn't need a diagnosis for that". He has Aspergers and Dyspraxia. He will NOT outgrow either of them. Why in effing hell would we have gone through this whole process if we had a neurotypical happy social doing-well-in-school kid??? They think that they're being helpful and supportive. They're actually just being hugely judgmental asshats.

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  28. Ok, I can not tell you how much I have learned from SRMM. As a new mom, my son is 9 months old and I am starting to meet other new moms. But I worry I am going to say something so stark ravingly stupid that I will end up as one of your domestic enemies. What should I say?
    For example: I meet someone new and ask if they have kids or I meet their kids. I always ask questions about someones chidlren (age, favorite activity). If they tell me one of their children has a special need, should I ask them more about it? Say wow that must be tough some days? I would want them to know that I am not judgemental, stupid or ignorant, I would want them to know I have only half a clue as to what their life is like, but that I respect them and their children. I worry I am going to be the jackhole and I want nothing more than to be the opposite.

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  29. I have a serious question for moms of special needs kids:
    What should we do?

    In my case, I have two neurotypical kids, and they are very curious. An acquaintance had a daughter who was 9 and in a wheelchair. She had suffered from lack of oxygen to the brain in utero. At a picnic, we saw them again.

    When my then-5-year-old girl asked me what made the girl be in the wheelchair, I said out loud, "I don't know honey. Would you like to meet the girl and ask her? She or her mom could probably tell you."
    So my girl and I walked over to the family, and my girl introduced herself to the wheelchair-bound girl and the mom, and asked if maybe the girl wanted company, and why was she in a chair?
    The mom explained briefly about the oxygen, etc. And my daughter said, "Oh. Ok. Can I hold her hand or show her my My Little Pony?"
    and she did.

    Is that kind of thing ok? I would rather just walk up to a family and ask if they want some company, and admit to wondering.
    I think it reminds us all that the person with the disability is first and foremost a person.
    But I don't know! is it rude?
    --kate in MI

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    1. I love you and your daughter, you are wonderful...

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  30. My personal fav about my 4 yr old son who can be really difficult at time in public. He is strong willed and has a severe speech delay making communication less than exciting at times. (Did I mention he *thinks* if he talks LOUDER I will OBEY/ understand him?)

    It goes like this typically - "Oh, he's so cute. How old is he? I don't understand anything he says, you should check into speech therapy." SERIOUSLY? He's been in speech for 2.5 years.

    Also - forget strangers, you can totally walk away from them. My other personal fav are other moms or family who "diagnose" him. Tell me he has sensory issues, or ADD, or impulse control problems. The only current diagnosis - he is speech delayed due to serious hearing deficits during formative language development. This is thanks to ear infections and multiple sets of tubes. His ears are healing - he just had an almost normal hearing test. Other than that - he's just frustrated kid who can be a bit of a jackhole. I'll let you all know if something else crops up stat. Otherwise - how about you offer to take him while I go to the store so there's no meltdown?! Wouldn't that be novel...

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  31. Did you move *into* my brain?

    Because, THIS. For the love of all things holy and exemplified, THIS. Can we *please* consult with Staples about submitting a mass-quantity order, and have a copy of this run off for every soul on the planet?!

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  32. How about the friends, or people you know and/or associate with, who have grown kids and every trial you are going through is met with, "Well, I raised my [fill in the special need] kid without medication and blah blah blah blah blah...". It all boils down to this: I did it so shut up and stop talking about your parenting issues. NOT helpful, NOT nice, NOT friendly, and certainly NOT supportive.

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  33. I have loved every post I have read on here and have shared many but this one is by far the one that hits home with me the most.
    My 13 yr old perfect daughter was born with Congenital CMV. She really is perfect....if I could have 10 like her you bet your bippy I would.
    I get "looks" when people ask about the dreaded teenager because she has no interest in boys or anything that has to do with "normal" teenager behavior (except fashion...let me tell you that girl loves clothes!)
    I also love how people say the "she doesn't look retarded" Really was there an outline that we didn't get her squished into? And BTW she isn't "retarded" she just doesn't process crap the same way as them.
    Thank you for posting this!!

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  34. Preach it! As a mom with a 6 year old ASD/SID boy... who is not potty trained either (BTW)... all you have said is what I want to yell to those stares/comments/ etc.
    the dagger is found in the family member who thinks this way without even educating themselves on their own flesh and blood......
    thumbs up!

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  35. This has been such an encouragement! My soon to be seven year old is autistic. Last week I told an OT that we would no longer be using her when she told me for the third time that she would not let her kids ever behave the way mine did during a melt down. She just didn't get it....

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  36. Thank you for this post! I have felt the same way with my 5 year old daughter! She finally potty trained in April at age 5 1/2.

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  37. @Kate in MI: Kudos to you and your sweet daughter. I never mind an honest, open-minded question, especially from a curious child. I'm guessing most special needs parents prefer a caringly-phrased question to the gaping-mouthed stares! Nice job.

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  38. I LOVE this post. I want to run copies off and share it with EVERYONE I know.

    A couple of things:
    1) to the mom that asked what she should do, and then outlined the "My Little Pony" approach: In my world, that would be perfect. My daughter (PTSD, with sensory and OCD-type issues) would have loved to have talked about the pony, and it would have stopped whatever behavior she was having. My son (global delays and craniosynostosis) would have petted to pretty pony, and I could have explained why his head looks like an Easter egg, with the huge scar running from ear to ear. Even my cranky brother, newly in a wheelchair due to a pretty horrific accident that caused paraplegia and some cognitive and behavioral issues (3 years this month) would rather have explained than just have people stare.

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  39. I love you.
    This post is awesome and sums up so much of what I'm thinking when we attempt to interact with strangers. Love it, love it, love it.

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  40. Excellent post, as always. I think the only people you might consider adding to your list are the "At least it's not ____" people. Usually, when hearing about your child's condition, they say "at least it's not cancer" or "at least it's not MS" or basically whatever other awful condition your child doesn't have.

    Yes, we are eternally grateful that our children don't have those horrible conditions. However, to try to negate the struggles of our lives by comparing them to a different struggle isn't fair. I have two kids, now 6 and 3, with autoimmune (type 1) diabetes, diagnosed when they were 18 months and 26 months old. Without proper 24/7 care and insulin administration, the grim reality is that they would die in less than a week. With proper care, however, they will live long, normal, happy lives.

    Don't make me compare/justify myself against anyone else's life. I think our lives are varied enough to allow for there to be difficulties in all shapes and forms without comparing one disease/condition to another.

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  41. Kate in MI, you made me cry (hey, that rhymed!) Thank you!!!

    My oldest is autistic, and let me say: been there, done that, could have written a book. My favorite was the response from more than one friend/family member, right after he was diagnosed, was that autism was the "new fad", and there was nothing wrong. You just watched my son pull every can out of the pantry and line them up across the kitchen floor, then throw himself into the wall and scream because there weren't any BLUE ones!!! That's NOT OK!!! Needless to say, there are some people we just don't associate with anymore.
    Oh, and the judgement we got when we decided to have more kids!! "How could you do that, don't you know there's a risk your baby will be autistic too?" I'm already pregnant, what exactly do you want me to do?? *tears hair out*

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  42. I think that sometimes people don't actually mean what you think they mean. I was carrying twins at one point and people asked me if twins ran in the family. I never thought they were implying, "Did you use fertility drugs?" because twins DO run in my family and, btw, I did use fertility drugs. While I do agree that people often knowingly make rude comments, I also think that sometimes they are just asking questions because they are interested and not because they mean to be rude.

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  43. Stark Raving Mad Mommy, you live in my brain!!!! This was PERFECT. My daughter has Asperger's, and I have encountered every one of those DEs. Bless you!

    To Jennifer-- do what Kate in MI does!

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  44. "the new 'fad'" bit drives me nuts too! i spotted my son's issues when he wass an infant, and no one in my family believed me. why? because i study child development,and child psychology, i couldn't POSSIBLY know what i was looking at. i went through the first 4 years of his life teaching him management on my own. so now of course when he has a meltdown its just a 'tantrum' .
    my personal favorite was my biggest 'naysayer' went for years and years telling me there's nothing off about him at all, its all in my head. . then he threw one of his meltdowns at her in the midst of a major OCD spell, and she called me to say "there's something wrong with him- have you had him assessed?" a hit to the throat was too kind for THAT one.
    also agree w the "cure" comments- i LOVE my son just the way he is. yes, he is challenging to ad nauseum, but he shows me the world in a new perspective, makes me remember all those little things most take for granted. i wouldn't change him for anything. (even if some miraculous cure all was found tomorrow. no thanks. )

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  45. My child isn't his diagnosis, he's himself, you knuckle-dragging cretin. How about investing all your 'preachy' energy into changing the raging jackhole you are and keep your yap shut about the non-existence of his various conditions. Unless you intend to live in his body for even 24 hours, eff off. Thank you and have a nice day.

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  46. Let's form a kind of roving gang and anytime we see these bungholes approaching a parent with a "helpful" comment, we will bind and gag them and leave them lying in the grocery store aisle. Mind your business, folks!

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  47. Thank you so much, that brightened my day. I am lucky in that when my son has a meltdown he doesn't scream. He opens his mouth and no sound comes out, so less people notice, until he starts the hitting, kicking, slapping, biting and flipping people off. And you are right it does not help to have people say "If that were my child I'd beat his a**" because yes he knows its wrong and that makes him fight more because now he is embarrassed/angry at himself for melting down in such a public way. So thank you this helped me a lot, especially since my jaw still hurts from the last time he melted down.

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  48. I feel so superior that my autistic child is potty-trained and yours isn't. Oh wait...Mine is a year older and is JUST potty-trained. Drats! There goes that. I guess then, WELL SAID. Now, can I print 1000 copies and pass them out to anyone who asks how old my son is and then gives me that look and "oooohhhhh" when I answer. Screw them!

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  49. Loved this post!!
    I have one to add that broadens the "do twins run in your family" question. I have 2 children one with blonde hair and one with brown hair. I get variations on "wow, their hair is so different! - same father?"
    I put up a rant on my facebook the other day actually directed to other parents with children on the Spectrum:
    Just because my son has a form of higher functioning autism (that HAS been diagnosed by a proper, specialized medical doctor) means he presents itself in an atypical way doesn't mean that it is less devestating or has less of an impact on his ability to cope with and interact with the world around him. In fact it might be more so because it means that the expectation is for him to be 'more typical' and sets him up for teasing, bullying and a lack of understanding when he does things, reacts to things or sees things in a different way.

    As a parent I have read, researched and taken courses. I am open minded to all the different therapies but reserve the right to decide what will or won't be needed for him. It is insulting to my intelligence that you think you can shrug off all the hard work and therapies that I have done to bring him to what he is today because it doesn't match with your ideas of what you think autism is or the therapies you've done. I'm glad it worked for him and I will continue to do anything I can to help him be the best he can be in this world. You don't live it exactly like we do. Stop being superior and all knowing.

    I support all you are doing to help yours, will you support me?

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  50. My son who has Global Development Delays is just like every other boy his age. NO he does NOT have intelectual "problems" he is a very smart boy. Just because his body cannot physically do what other boys his age do, does NOT mean he is intelectually impaired. No he does NOT need to go to a "special" school (this from my SIL)
    When I fell pregnant with my daughter, I got comments from family members such as "Isn't it a bit soon, shouldn't you be concentrating on your son's problems" ARGH!! My daughter was born with a inborn Metabolism error - meaning she is on a VERY restricted protein-free diet (due to 2 recessive genes) I get the comment "but she looks normal" - I mean Whuck?? It's kinda like diabetes as a disease. Of course she is normal!!!
    Oh and I have also got the comment "You'd better not have any more kids" - whose life is it anyway??? I lve my kids to death. Their special needs do NOT define them...

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  51. awsome! Now we need a "handicapped mommy" version. I'm still waiting for my foster care license to be approved and I already hear "Are you sure you'll be able to handle a toddler? they move pretty fast!" and "What are you going to do when DH is at work? You cant carry a baby!" - I have mild Cerebral Palsy and move slowly with less than good balance.

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    Replies
    1. I have mild CP and people have straight up told me it would be unkind of me to have children because it'll be too hard/they could have something "wrong" with them too. I'm like 1. I've taken care of kids since I was one. 2. Cerebral palsy is not passed down genetically. Do some research before you give your oh so helpful opinion.

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  52. Amazing. My favorite is when I'm asked, "So did you smoke or anything while you were pregnant." My kid has a very rare genetic disorder, not asthma.

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  53. I too have a special needs child and the one thing that I heard from numerous people (when I was pregnant) was: "Aren't you afraid that you are going to have another special need child?" I finally had enough and my response was "God only gives people what they can handle. If I am blessed with another special child, then HE knows that I can handle it. So, if I have 2 special needs kids, I'm guessing he thinks that I am twice as good of a mother than you since your kids are all normal...right?" That usually shut them up. When my daughter was born, my Grandmother gave me this poem that I keep in my wallet:

    Heaven's Very Special Child
    by Edna Massimilla

    A meeting was held quite far from earth
    "It's time again for another birth'"
    Said the Angels to the Lord above,
    "This special child will need much love."
    His progress may seem very slow
    Accomplishments he may not show
    and he'll require extra care
    From the folks he meets way down there.
    He may not run or laugh or play
    His thoughts may seem quite far away
    In many ways he won't adapt
    And he'll be known as handicapped.
    So let's be careful where he's sent
    We want his life to be content
    Please, Lord, find the parents who
    Will do a special job for You.
    They will not realize right away
    The leading role they're asked to play.
    But with this child sent from above
    Come stronger faith and richer love.
    And soon they'll know the privelege given
    In caring for this gift from heaven.
    Their precious charge, so meek and mild,
    Is Heaven's Very Special Child.


    That poem is my sanity when we are having rough days.

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  54. I like this post.........
    ===========
    web design

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  55. Question for SRMM: Is there anything anyone can do to help you? I've seen meltdowns in public from kids who appear to be on the spectrum, and as a teacher of spec. ed., I have some skills to help those parents, but I don't know THAT kid. Would you be offended if someone asked if there was anything they could do to help?

    I'm asking because...[random story here] this one time at Walmart this kid got his fingers caught in the shopping cart and was bleeding all over the place. After giving the kid first aid (the inept walmart employees couldn't even find the box) I walked with the mom and pushed her cart to the front of the store where I cut in line on her behalf and helped her check out. Would something like that be useful to you? Or would me asking you just distract you from handling it yourself?

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  56. While i can understand and identify with some of what she said - she is really just a very angry bitter person inside

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  57. Oh, Anon at 9:22, haven't you learned ANYTHING from us?
    If you're gonna spew snark, at least put your name on it. Sigh.

    Blahblahblah angry and bitter? Because maybe she has stuff to be angry about? To be bitter about? Because there are annoying judgy people out there who would rather just criticize from the safety of anonymity?

    Keep an eye out for houses from Kansas falling on you.
    -kate in Mi

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  58. This is just fantastic! I so need to print it out and carry this with me, passing out copies to all the "enemies!" Thanks for posting this!

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  59. Hi, I just LOVE THIS! I too am a mommy of a special needs child that is a twin. I am fairly new to this specific area of mommyland, as my twins are only 15 months. I have a 6 year old as well. I cannot tell you how tired I am of the questions like "what's wrong with him?" What is wrong with you? Why are you frowning at a one year old trying to figure out what went wrong? Are you kidding me? I keep waiting to feel at peace with the people who ask me these questions, however, instead I feel an increasing need to smack them!

    Anyway, thanks for the post! This is great!

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  60. Excellent! I've been waiting for this post. I have three kids with Autism. I'm pretty sure I've heard all of these.

    I agree with another commenter that you missed the family member who doesn't think anything is wrong (i.e. is HEAVY into denial). My FIL said, "Well, you're going to have your hands full for a few years." Um, so it's going away? I said, "And then what happens?" He said, "Oh, they'll be fine." WHUCK?!

    There's also the inlaw who likes to mention that autism doesn't run in *their* family. *cough* Maybe not, but brain damage is about to.

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  61. Oh, I can beat y'all. My 4th was a scheduled C. My Dr. (who I have a great relationship with & delivered the other 3) woke up sick that morning and one of her partners had to deliver. The nerve of that Dr. floored me.

    That woman (who has an autistic child too) said to me, as I'm holding my newborn in my arms, "Well, that was mighty brave of you to have another. I wouldn't take the chance because I'm sure its genetic."

    I haven't forgiven my Dr yet for not being there and hiring that bitch in the first place.

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  62. My nephew has Spina Bifida. He can't feel his feet and can't walk on his own. He wears braces and needs a walker. He was leaving church and a woman said to my SIL, "what a great way to help him learn to walk". Granted this woman probably had no idea, but I can't believe my SIL had the grace to not say anything to the woman, I would've blistered her face right off.

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  63. Thanks Roxy for sucha lovely poem x x

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  64. As a mom of 3 neurotypical (yet slightly idiotic) young boys, I am wondering how I can learn from this post and help them (and me) to never become domestic enemies of special needs children.

    We have some very special friends of our own. One dear friend is 2 and has progressive infantile scoliosis. He is in a cast that goes his shoulders like overalls down to his hips. This kinda makes him walk like frankenstein. We know him and ask ALL kinds of questions of his family about his condition and treatment. But, we KNOW them, so it's not akward when my boys ask a billion questions like 'how do you change his diaper with the cast on?' or 'why does his cast smell so bad?' or 'why is he wearing a garbage bag to the pool?'

    Some other special friends have EB - Epidermolysis bullosa which is known as the butterfly disease. These two kids are missing are missing a protein that affects every tissue in their body. They have a hard time eating because their digestive tract is full of scars, their little bodies are covered in huge scabs and open sores, their hair is thin, their teeth are bad, they are covered in bandages, their muscles don't stretch like ours, it's hard for them to walk. They basically look like burn victims. They are the first and third children of four.

    Their mom is a friend of mine, and she struggles daily with the stares, looks, gasps. I mean, her kids are usually bleeding from soewhere, but what is she suppsed to do about it? Just never go to Target because Nosy Nanny is goiong to get grossed out?

    Anyway, my point is ... how do i teach my children to gracefully ask questions when they are clearly curious? I don't want to teach them that when they see a special needs child that they should look away, that something is wrong, that it's something they shouldn't see. BUT, I also don't want to EVER have them offend them mom or the child and I don't know enough about special needs to know when I should have my kiddos speak to the child or the mom.

    I want them to say hello to special friends and hold the door for them, not turn and run with fear. Can you help me teach them how to do this with grace and respect?

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  65. how about "my two year old decided to potty train himself" or, our neighbor whose almost 2 year old is so verbal that mom is dreading the 3 hour car ride to their summer vacation at the lake because said little girl will be identifying and labeling everything she sees throughout the entire ride. yeah, that sucks for them. and both moms are close friends.

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  66. What I get the most of in this part of the country (think west coast) is the assumption that I'm just a parenting idiot. If I just bought more books for my daughter she wouldn't be dyslexic (we have approximately 300,000 books in our house), if I praised them more or didn't praise them at all or put them on a gluten-free/casein-free diet they would be normal and well-behaved and my 3.5-yo with SPD wouldn't have violent melt-downs and my 7-yo wouldn't be stubborn and distractable (hello, she has ADHD - that's how it present in girls). Either I'm too permissive or not progressive enough in my parenting... and either way I'm too high-strung about parenting and if I would just chill out we'd all be fine. Yeah, I'd like to chill out but it's hard when my 3-yo is hurling things at my head and my 7-yo is literally body-slamming me because she's overstimulated and didn't get enough sleep last night because she's also a major insomniac. They don't make chill pills strong enough, people, and guess what? I've read all the parenting books. We do all the "right" stuff. And they are still not neurotypical. They never will be. They were born that way, my own little Lady Gagas. :)

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  67. I think that pretty much covers it. Love it!! I'm never ceased to be amazed at how many people don't have a clue, or common manners.

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  68. This is spot on. What an excellent post. I have met each and every one of these enemies over the years. They suck.

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  69. Great Post. I have encountered every one of these enemies as well!

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  70. "Telling us your 18-month-old child potty-trained in two days because you used a sticker chart is not helpful advice; it's showing off. Shut. Up." <---- EXACTLY! I think this "advice" is unwarranted even if your child is not special needs. We've been struggling with potty training for about a year now and if I hear one more person talk about how "successful" their kid is at crapping in the potty I'm going to scream.

    A note on the "Nosy Parkers" regarding asking if twins run in your family. I ask this, and have asked this in the past, not because I want to know if moms had fertility treatments. Twins don't run in my family, but my husband is a twin, and I KNOW the studies say it runs on the mom's side but I'm running a secret study in my head to find out if I'll ever end up pregnant with two because of my husband's genes. It's probably not even something to think about but I still ask for that reason, it has nothing to do with your fertility and everything to do with my insecurities about my ability to care for two infants at the same time. For real.
    A

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  71. I've also asked about twins, just because both my mom and grandmother were twins so it interests me. Never thought it could be potentially annoying.

    "Then someone says, for example, "Isn't he getting a little big to be carried?" they're actually saying "put that kid down and stop spoiling your child." " -- I got this one from someone who didn't realize my son was still a baby. (He's always been ginormous.) She felt pretty damn stupid. And so she was.

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  72. BTW, I have an answer to the anti-depressants question, should it ever come up: "Yes I did, and I wouldn't have a child now if I hadn't."

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  73. Man, do I understand this. Thanks for writing about this, SRMM! I don't spend enough time on your blog, but that's going to change today.

    I wrote a post a little while back about the ups and downs of parenting my special little guy that included a short video of a public meltdown. What I failed to include were the passers-by with their judging looks.
    The Ups and Downs

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  74. **Thank you** to SRMM and to everyone who posted comments! I have two rants to add, first as a Mama of a boy with a motor delay, and then as a special education teacher.

    About my little boy-- *no,* he's not walking. Actually, he can't even pull himself up to sitting yet. I know it's a normal question to ask the mother of a one year-old, but it's kind of a sensitive topic for me. Just a little. And don't even get me started on Denial Daddy who won't let him go to OT.

    I have the incredible privilege of working with kids with autism in inclusive settings. And let me tell you, the other kids are great-- it's the ADULTS who are stupid, stupid, stupid. An older man (I am *definitely* not going to call him a gentleman) talked about my student right in front of him, as if he weren't even there! Um, he has autism, he's not deaf. And he's not "one of those"-- he's an incredible little kid and one of the smartest people I've ever met. He could run circles (literally and metaphorically) around your rude, dumb a$$. So just shut up.

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  75. WOW, thank you for this.. I just kept shaking my head yes as I read. My child has a severe heart defect and is not yet walking by herself or eating enough to sustain (and so we do G tube feeds) at age 3. So many of these points hit home for me.

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  76. SRMM, I love you...

    My son was born with Rhombencephalosynapsis with Hydrocephalus. A fused cerebellum is the key feature, hence problems with balance, coordination, motor planning, sensory integration,low muscle tone, etc.. He's 4 1/2 and not potty-trained, exhausts quickly and gets overly emotional. He's also the sweetest kid, very loving, very smart, and much more kind than the muttonheads. I'll add one of my pet peeves to the list: don't ask "what is wrong with him?". There is nothing "wrong", just different and I don't want my brave, strong, amazing child to feel shame over things he can't control. Whereas, you, Muttonhead, could control what you say, so the question is, what is wrong with you?

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  77. I want to add the Pity Party Throwers to this list. The people who are all, "Oh, the poor baby!" when they see my kid's hip brace. "Doesn't it bother her?" Uh, yes, that's why she's fussing all the time. "The poor thing!" Ugh, like I need to hear more pity, it's not like I haven't been looking at her and crying and thinking the same thing since they put it on her. Hearing it from others just makes it worse.

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  78. :sigh: a big, ol' WERD to the sistah. i have not one...but three kids with ASD to one degree or another. i've heard all that shit and more. the mom's on the playground used to try to give me advice about this, that, and the other after they found out the middle one is severely autistic...never mind that i'm a certified special ed teacher in two states, have a master's degree in special education, and am finishing a second masters. cause what they saw on *insert fucked up tv show* is so much smarter than some dumb teacher/stay at home mom. now that little man is older, the mom's have actually started rounding up their littles and leaving the park to get the hell away from us. cause...you know, autism is contagious...right? the douchebaggery present in everyday life towards the parents of SN kids is one of the most disheartening and defeating parts of our day.

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  79. After years of these experiences and lamenting and ruminating about every one of them I have learned (and it wasn't easy) no one has the power to make me feel anything. My annoyance, frustration or anger is not about them, it is about me. Once I was able to understand this and emabrace it, it was then that I was able to treat these expereinces as opportunities to teach others about the journey that I am on.

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  80. Best. Post. Ever.

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  81. I have a 6 yr old grandson with Down Syndrome, someone called him a retard today and I lost it!
    Geezus what's wrong with people?They all live in a world called me these days.
    Special needs are just that-special needs and I am so thankful he landed in our family and every day I pray because I got to be his Nana! I love him exactly the way he is. And the others? well they can all just buzz off! People can't seem to accept that we accept--I call all special needs kids'the beautiful people' because they call a spade a spade and they find as much joy as they can in everything they do and I just love that! Next time I hear a name calling like that, I deck them!

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