Comments

• Jim June 13th, 2012 at 3:39 PM #1

  For my family, it has been the being kind to ourselves that has always been the struggle. My wife and I are older parents, we waited to have a child, and now that he has autism we wonder, or I know I have, if waiting so late in life to have a child was what caused this. Is this our punishment for being selfish early in life and wanting to have some time for ourselves before committing to raising a child? I try not to look at it this way now, although I guess a little part of me used to think about it that way. I have come to terms with the fact that this is the hand we have been dealt and that we all have to live with, but sometimes I still have this nagging thought that maybe it was something that I did that caused this to happen. It helps a little but to say, you know what? I am not the cause of this nor is my son. let’s find ways to be happy with the good in our lives instead of only focusing on the bad.

• zeus June 13th, 2012 at 5:25 PM #2

  Hey Jim man, you can’t beat yourself up.
  We don’t know what causes autism, but you and your wife are not to blame. You’ve got to let all that go.

• Carleigh June 14th, 2012 at 5:33 AM #3

  I watched my parents over the years raise me and my sister who had Down’s syndrome, and while I know this is is not quite the same thing, I look at how many challenges they faced and how many obstacles they were able to overcome with all of us working together and it strikes me just how amazing they really are. We lost my sister a few years ago, and it was so hard for all of us, because for all of the struggles, she was such a special person and I don’t think that any of us would have changed the situation if we had the chance to do everything all over again. The one good thing that I always noticed about my parents was that they were so good at working as a team. they knew when the other was hitting a wall and the other who was very happy to step in and pick up some of the work. They also knew that when neither was equipped to handle a situation they were willing to say so and ask for help from someone in the community or some group who could help. That takes a lot when this is a child that you love but you are willing to step back and let someone else handle a situation when they know that this is a person who could probably handle it better. I think that all parents of special needs children have to give themselves this kind of break every now and then.

• blynn1 August 16th, 2012 at 6:05 PM #4

  We really tried to continue our lives and allow Autism to be a part of it, but not control it. I was the true type A perfectionist and found the most successful way to work with our son. After a legendary battle with the school district and big insurance, we lost big – school district influenced corrupt district attorney, Kamala Harris to come after my husband, a partner at a prominent firm. Charges were filed, the most unbelievable story contrived about us and our lives have been kicked to the curb. We are starting over again. It is hard to be kind to yourself when corruption leads to destruction of those that are kind, intelligent and do right.

• Amy Caraballo August 21st, 2012 at 7:34 PM #5

  I feel so sorry for folks who feel this way. And even more sorry for their kids who have to live with misplaced guilt of ruining their families lives. There is something to be said for needing to be happy with oneself before one can be happy with others.

• michelle lauck August 21st, 2012 at 7:42 PM #6

  As a single mother raising 2 special needs sons (one with autism) I relate to how difficult it can often be and I agree with your advice to be good to yourself. I’m truly sorry that your experience raising someone with autism ‘just plain sucks’ ‘much of the time.’I do find some of your comments to be among the most offensive I have ever read/heard about autism. From ‘putting lipstick on a pig’ through ‘looks kinda cute’ you objectify in a degrading way, an individual. I’m disgusted to read you refering to ‘it’ at first as autism but then as your son. Really disturbing comments and more so because you are a professional and parent of someone with autism.

• John August 21st, 2012 at 8:52 PM #7

  My advice: Write this article, as though your son could read it.

  Neither of you are at fault for his autism, but he is ALWAYS at less fault than you. Never more. Treat him as an equal human being.

• Wendy Sullivan August 21st, 2012 at 9:06 PM #8

  As the mom of an 11-yr old with autism, I understand your struggle. Yes, some days – many days – are harder than we ever could have imagined. Having said that, you do realize, don’t you, that adults with autism read your posts as well? You have hurt them deeply with your comments. I’m with Michelle L. … your words come across as very disturbing. Please read them through the eyes of your child. There is a time and a place to vent our frustrations, but on a public blog? With such damaging verbiage? And as a means to offer support to people? A cute pig? I know humor, and this is not it.

• Angel August 21st, 2012 at 9:22 PM #9

  I agree with the above comment by Michelle Lauck, you are incredibly selfish and do not deserve to have any child and hopefully you never get to work with any. The ‘pig’ comment disgusts me.

• Kathryn August 21st, 2012 at 9:24 PM #10

  I agree with Michelle’s comments and appreciated Carleigh’s story.

  Although the advice is good, there’s no reason to present autism (and your autistic son) this offensively. All you needed to say was that because raising an autistic son is more challenging than raising non-autistic children, you have to make sure to take care of yourself so that you can take care of your family. That’s all.

  Just follow your own advice in #3 and leave out the self-pity about being devastated by the diagnosis and how autism sucks and comparing autism or your kid or whatever to a pig. I don’t think anyone out there thinks parenting autistic kids is easier than usual, so the detail just spoiled the article.

  Mixing cow pie with apple pie doesn’t make cow pie tastier, but it will ruin the apple pie.

• Krakatoa August 21st, 2012 at 9:45 PM #11

  I can’t imagine what would have made a more offensive article. A selfish, whiny woman with no respect for her son as a human being, with the unique talents and abilities he has to offer the world. I hope the coping skills she listed can help her live with herself, after she has just insulted not only her son but all children and adults who struggle with autism.

• Genisa August 21st, 2012 at 10:14 PM #12

  I really feel bad for your son, having a mom who refers to him as “a pig” or “it”. I find much of your article quite offensive. A diagnosis of Autism is not the end of the world. I have Aspergers and my son has a diagnosis of pdd/nos(autism). I would never ever refer to my son as “it” or any of the other derogative terms that you have used in this article to refer to him. Your son is a beautiful gift from God and you should be thankful for that gift. I hope that you can see through your self centered views to see the things to see what your son can do and love him for who he is. Cherish him and love him. Don’t insult him and have disdain for him. If you can’t do this, then I would advise you to find a better home for him.One that will love him and treat him with respect. If you don’t believe in him, how do you expect him to believe in himself? To succeed, you have to believe that you can.

• Megan August 21st, 2012 at 10:21 PM #13

  Oh Jeez! yea, I’m so sick of this angle. If people don’t constantly bombard the world with devastation talk, then maybe people wouldn’t feel that they are somehow supposed to feel this way. If the world would just say to newly diagnosed parents “yeah, there are some hurdles ahead, and a lot to learn, yet your child is going to learn and grow, and s/he will teach you so much. Just like any other child.” I wish THAT was the message being plastered out there.

• Kell August 21st, 2012 at 10:29 PM #14

  michelle l’s reply is honest and quite correct. Raising any child is challenging and requires self care. I am insulted as a human being and as a mother of an ASD child by your first paragraph.
  You’re supposed to be a professional? You sound like those hopeless parents that meet every month to talk about the woes of autism and look for a cure/cause.
  My advise is to do the self care and drop the pitty party! Your child is a human being, with full range of emotion. Your child knows that you disapprove of who he/she is. Focus on the successes you and your child make together.

• Genisa August 21st, 2012 at 11:26 PM #15

  and one thing to remember is that someday, your child will be able to read this degrading article you put here on the web and will know just how much you despised him. Hopefully he will be more forgiving than you.

• cathy r August 21st, 2012 at 11:43 PM #16

  Pretty offensive analogy-my son prefers to be known as superman,rather than a pig in lipstick.entirely unhelpful “information”,if you could call it that.

• Kiwipen August 22nd, 2012 at 12:48 AM #17

  Autism as a ‘devastating’ diagnosis. Sigh. If i had a dollar for every time i read that, i’d be a rich woman. As an adult on the spectrum, i find your comments offensive. Lipstick on a pig? No matter which way you try to justify that, it still stinks.
  The thing is, it’s a matter of attitude. Autism would not be so ‘devastating’ without the MINDSET that it’s ‘devastating’. It’s the belief that it’s the most awful thing that could ever happen to you, that your life is ‘ruined’ by having this ‘problem’ child, that is so stressful – far more than having a kid who is non-verbal or still not toilet-trained at twelve, or who says ‘rude’ things to people, or has a meltdown in the supermarket, or whatever.
  If however the autism is accepted, then life becomes much easier. Not easy, necessarily, but definitely easier. If you talk to parents of autistic children who do NOT think their kids’ autism is a ‘tragedy’, you will soon find out what i mean. Thankfully, there are plenty of those sorts of parents around. I wish there were more, and less like yourself.

• Neil Kapit August 22nd, 2012 at 1:58 AM #18

  I have autism. I also have a loving mother who treats me with respect and would never refer to me as a pig behind my back, or any other degrading name. No matter what difficulties I presented her when I was growing up, I always felt as though she cared about me because she was a good mom. Not because she wanted to aggrandize herself with the narrative of the brave warrior mother coping with the tragic burden of the special needs child.

• Cynthia August 22nd, 2012 at 7:12 AM #19

  Mindfulness has absolutely nothing to do with changing your thoughts! Detach from them and observe them, and do not identify them as “who you are”, but any attempt to change or control them is the opposite of mindfulness practice. Most accomplished meditators (including Jon Kabat-Zinn, mindfulness pioneer who developed MBSR in 1991) advise that it is a good idea to get some guidance from a meditation teacher if you choose to pursue this path. There are many, many hidden reefs and obstacles of our own creation, and your explanation of mindfulness practice indicates that you may benefit from some direction and assistance in this regard.

  Also, my 4 year old son has autism. I can honestly say, and I say this to him, he is the greatest source of joy in my life, who he is makes me feel happy and lighter, and he is the absolute best teacher I could have ever been blessed to experience and learn from – and the emotions communicated in your post do not resonate in any way. The importance of self-care is probably the only intellectual concept I can really agree with.

  I am spectrum, myself – though highly functioning with no verbal delay.

  Your post typifies much of why I have been in therapy for the past 12 years; my therapeutic goals have been mainly to release the nagging and sometimes overwhelming feeling that “who I am is a burden to other people, and they would be happier/better off if I was not in their life.” This was constantly communicated to me, not directly, but implicitly in my interactions with my mother.

  If you still feel like “it sucks” – then you are still resisting what is. I know it is hard work to truly accept yourself, and those around you, and I hope that you find a way to surrender completely to what is, and find joy in your process rather than continue to view your experiences with your child as burdensome and unwanted.

• Kat August 22nd, 2012 at 9:34 AM #20

  Interesting reading everyone’s comments and opinions. I am the parent of three kids, one firmly seated on the spectrum, one toeing the line, and one who is mostly neurotypical (except for normal teenage craziness)… It didn’t occur to me to be offended at the verbiage of this article. This writer sounds to me like a mom who (a) loves her kid very much and (b) is just being honest about the ups and downs of living with severe autism. She didn’t call her SON a pig. She compared the disorder to a pig, and staying cheerful to lipstick. Sometimes when I feel bad, I dress up. I put on good clothes and little makeup (lipstick!) to “fake it til I make it”… but sometimes I have to allow myself to have a good old-fashioned cry and let out the frustration and the “really? again?” emotions. To NOT vent those things at least sometimes is unhealthy! I applaud a person brave enough to share this where it might help another mom who is beating herself up because sometimes, yeah, living with autism sucks, and she thinks she’s not allowed to cry or feel frustrated or angry about it.

  This writer isn’t stuck at self-pity… what I read here is an honest moment, followed by solutions for moving ahead.

  And the target audience isn’t the affected individual… the target audience for this article is clearly the caregiver. There is no such thing as an article with a universal target audience. Give the author a break! This is one tiny segment of a varied mix of emotions, tools, and coping skills!

  I’d rather have a professional who is real than one who insists everything is roses all the time.

• Leia August 22nd, 2012 at 9:46 AM #21

  I was so surprised to read some of the comments on here after reading the article. It seems like so many readers have missed the author’s point. She is not objectifying or disrespecting her son; she’s simply saying that it’s ok to acknowledge that autism is difficult to deal with (not a person, autism). Similarly, it sucks dealing with depression or ADHD or a food allergy. Acknowledging that something is difficult is just the first, very therapeutic step in managing that specific set of challenges. After that one is better able to find strategies and tools and administer self care. Then one can truly appreciate all the beauty that living with these challenges brings. I commend this woman, as a mom and a therapist, for having the courage to admit that sometimes we don’t like these challenges. Because it doesn’t mean she’s a bad mom; it means she’s human. As a therapist she knows that feeling guilty about those feelings and trying to hide them hinders one’s progress. However, by examining them, holding them, accepting them, we are are free to move on and help ourselves and our loved ones in a healthy way.

• Janeen August 22nd, 2012 at 9:53 AM #22

  Wow, there sure are alot of bullies on this playground. Ok let me first sincerely apologize for offending anyone. That was definitely NOT my intention. I did NOT call my son a pig….I used a literary technique called personification (eith a twist of sarcasm) to highlight what my personal experience has been with the diagnosis. It is not meant to be literal. I see my son as separate from Autism. He HAS autism, but my son is so much more than his diagnosis. No more than a cancer diagnosis is part of a person. It is not.
  Some of you have taken my 500 words and made sweeping judgements about my character, professionalism, motherhood and ability to cope. It’s ok, I can take it. It’s the same look I get in the grocery store when my son behaves in a way that people don’t understand. Judgement and condemnation are par for the course. But I need to clarify the things that have been misinterpreted.

  1. I did NOT call my son a pig. I love him more than anything in this world. Autism has not changed that. I do not resent my son, I love him. I would love for him not to suffer the life that comes with having autism, but it is what it is. He is more than a diagnosis.

  2. Yes, I do call myself a therapist and i strive to be a good one, but I’m not afraid to tell it like it is. For me and for every parent I’ve treated it has been a devastating blow. To put someone down because their experience is different from yours is invalidating and disrespectful. I’ve learned to get past the initial devestation and truly become a better person because of my son and all that he has to offer our amazing relationship. But I would be lying if I told you I LOVE autism. I don’t.

  3. If you have autism or parent a child with autism you have earned the right to speak about your OWN experience. That’s all. You’re in no position to judge mine. If you’d like to try on my shoes for a day and walk around in them, be my guest. (note: that last line was sarcasm.)

• Neil Kapit August 22nd, 2012 at 1:56 PM #23

  “No more than a cancer diagnosis is part of a person. ”

  Cancer kills a person. Autism doesn’t.

• smibbo August 22nd, 2012 at 3:21 PM #24

  I too am a mother of special needs kids – two on the spectrum – and though I understood the essay to be about THE EXPERIENCE OF RAISING a child with autism, I’ve dealt enough with the champions of autism to know that as soon as you open your mouth to talk about THE EXPERIENCE they will all leap to beat you with your own words by totally misdirecting the point. You cannot say “Autism is not the whole of the person” while at the same time decrying someone speaking negatively of THE EXPERIENCE OF CARING for someone with autism. If an Autistic person is MORE than their diagnosis, then you clearly can separate the person from “Autism” itself. If you can separate the two, then you can understand discourse surrounding Autism is not discussion of the person. Can’t have it both ways.

  At the same time, Janeen, you weren’t clear enough. And you chose words that have an air of permanence to them. “devastating” is a harsh term and it implies a grief and loss that will never abate. It also means “ruination” which is a permanent state. I wish people would stop using that particular word. Or at least say “temporarily devastated” – I use the word “crushed” when I talk about the early days after diagnosis. Because many of my expectations and dreams for my children WERE crushed, but that didn’t prevent me from getting new expectations and dreams; readjusting my viewpoint, so to speak.

  More importantly, all you mothers who say ‘I feel sorry for your son” and other phrases of “you’re a terrible parent” should be ashamed of yourselves. Take a hard look at what you said to another mother dealing with something you should understand, even if you don’t like the words she uses. I am apalled that so many who claim to be dealing with “special children” would be so quick to jump up and dish out some judgement and shame just as they have probably been dealt on many occasions.

• Kelly August 22nd, 2012 at 8:12 PM #25

  This forum has clearly gotten out of hand with comments from folks who seem to have misunderstood the author’s stance. These comments basically call the author a bad mom and a bad therapist. These are personal attacks on her character which should not be allowed in this forum. This is a forum for open discussion and dialogue, not bashing and bullying.

  These negative, hurtful comments are being made about someone who has dedicated her life to helping others learn to care for themselves while caring for their children with autism. Every mom who lives with a child who has autism has the right to their own personal feelings about the disorder and how it affects every aspect of their daily lives.

  The point the author is making is that it is important for parents to accept their feelings and to allow themselves to take care of themselves so that they can be the best parents they can be; self-care is an important aspect of parenting, especially parenting a child with special needs. Autism is a developmental disorder and there are times when autism can cause very difficult challenges for the whole family.

  This author, therapist, and autism mom clearly loves her son and she happens to use humor as a HEALTHY coping skill to deal with issues that are very difficult to handle. Having a child with autism can be emotionally, mentally and physically exhausting. The above article has some very practical tips on how to handle the special challenges that come with having a special child.

  This article is real and I commend the author for boldly discussing issues that many people need to hear but too many are too afraid to talk about for fear of criticism.

• Melanie February 12th, 2013 at 2:40 AM #26

  “Bullies on this playground”.. Indeed. Good heavens. The venomous and angry comments directed at the author are so dreadfully inappropriate. It saddens me to read such vitriolic remarks. Please stop with the hate speech already.

  My 9 year old son has autism, PDD-NOS, Expressive Speech Delay, Acute Anxiety and associated alphabet soup dx’s. Academically, he functions at the level of a kindergartener.

  Is he the shining light and love of my life? ABSOLUTELY!

  Parents of children with autism do face many challenges. It is often overwhelming. As stated very succinctly by Kelly, Leia, Kat: those challenges can be emotionally, physically, intellectually and mentally draining and absolutely exhausting.

  Also, as noted by Jim; being “kind to yourself” ie self care is often bloody hard to consider; let alone schedule. The concurrent issues of self blame, doubt, fear etc., are tricky routes to negotiate. Kudos to Zeus btw.

  I am an older parent as well. When I became pregnant at age 40 I felt so blessed. It was a miracle. Admittedly I had (vanity) issues with my OB referring to me as an Elderly Primigravida! Elderly?? How rude!

  During my life since my son’s birth and diagnoses at the age of 3: I have certainly spent a lot of time in the troughs of despair, fear, grief, isolation and depression. My health has suffered (note to self: self care STAT!). My husband and I are estranged. I totally agree with Janeen in as much as sometimes life does pretty much suck.

  Concurrently my son is struggling in an ESE classroom on an “Amended Curriculum”. He is terrified by the newly implemented disciplinary measures used in his ESE classroom. He has had multiple absences during this school year: flu, strep throat, impetigo, conjunctivitis.

  During his last IEP meeting I was advised that any further absences must be documented by a note from a pediatrician or similar medical provider. OK. (IEP Amendment Meeting May 2012: provided medical documentation regarding autism dx/impaired immune system and resulting multiple absences).. “If not, (me: the parent) would be in violation of Florida Statute X re Truancy”. I was further advised that the County School District would “consider” legal action and file a formal complaint with the (insert county) Courthouse. I was also accused of “address fraud” as a letter incorrectly sent to my old address was returned to the school.

  These and other issues are upsetting and unpleasant. To paraphrase and plagiarize (again!); all of this pretty much sucks.

  There is, however, no such thing as a perfect life/world. Though I sometimes envy two parent families with high achieving NT children.. I also know that the aforementioned of course have their own challenges. Everyone has challenges. Even Donald Trump with that hair comb over look he is currently sporting…

  I celebrate every achievement my son attains. More than anything I wish for him to be HAPPY. He has a bright, sunny personality and an astonishing sense of humor. He has skills and abilities that are amazing. He reprograms my computer when it crashes. He makes wickedly delicious chocolate chip cookies. Additionally; he is THE most beautiful child I have EVER seen :-).

  Janeen’s article contained excellent advice and expressed a little (much needed and appreciated) levity and humor regarding the lifestyle of parenting a special needs child.

  I am really going to shut up now. Seriously. I have a kickboxing class at 10am. Stress management, endorphins and combating middle age (ahem) spread. Rock on.

  Sending best wishes to all.

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