Think Before You Judge An Autism Parent: Until You’ve Walked in My Shoes

greenbeangirlI’ve been a parent now for around seventeen years. I’ve worked closely with children with special needs for the past six. With each new experience, it seems I encounter the same general mentality. No matter where I live, work, or attend church some things never change. I am bombarded by close-mindedness and regularly hear  these common, accepted, judgmental phrases. They keep floating around in my brain keeping me awake at night. I’m sure you’ve heard them all before:

“Mom does everything for him.”
“Mom babies him.”
“He gets to do whatever he wants.”
“He gets to eat whatever he wants all day.”
“He isn’t made to mind.”
“That kid needs a good swat on the butt!”

These generalized judgments are made so easily and widely believed as fact. Everyone jumps on the bandwagon! Discussion of rotten kids with horrible parents runs rampant.

greenbean3I often wonder how everyone can judge so quickly someone’s family situation, without even really knowing the family? Or even knowing what it’s like to raise a child with special needs?

“Special needs” seems like too nice a term for what some of us go through with our injured children, constantly sick from food and/or allergies, bloated bellies and gut pain, feces smeared on the walls daily, high-pitched screams and terrifying tantrums. I don’t think the accusers know what it’s like to worry every second that your child might seize, wander away, become lost or abducted, or drown. They can’t fathom the constant state of panic that causes an individual to function in survival mode. Lack of sleep can make you justify just about anything. Want to lie in my bed? It’s 4:00 AM, and he’s been up four times already. I don’t have the strength to fight with him. I just need to sleep . . . so I pull up the covers and cradle my little one to get just one more hour of sleep before he is jumping on the bed demanding for me to get up to start the day.

An incident like that might be portrayed something like this:

“Did you know his mom doesn’t even make him sleep in his own bed? (insert snarky disgust) What — is he going to just sleep in their bed until he’s 20?!”

Not only is there no compassion for us and the marathon we are running just to get through the day, but there is no compassion for our hurting, sick, affected children.

Oftentimes, when we trust our children to another adult, they do their best PR work to ensure we feel safe leaving our child, hoping our mommy alarm won’t go off and see their true intentions. And while not all caregivers have ill intent, a good share of them don’t give two hoots about you or your child. They just want to get through the day and get paid.

How many times will a caregiver take small things and turn them into a big deal? If your child has dyspraxia and has trouble getting their words out, does the person in charge of their care yell at them for not speaking up? For not speaking clearly?

How often will our children be misunderstood and mistreated? Something that may be acceptable at home, all of a sudden is off limits or forbidden. I think about my son, who often runs or gallops from one end of the house to the other. He is not unsafe; he is excited and happy. At school or at a care center, this would be considered unacceptable. I can just imagine the light going out of my son’s eyes as he is scolded for something that simply causes him joy and puts a smile on his face.

So, with all the criticism and the harshness projected onto our children that have such a hard time navigating life the way it is, where DO we turn for help?

greenbean2Doctors? They won’t acknowledge any real pain or deep-rooted systemic illness. They might refer you to behavioral health, maybe with a prescription for a daily allergy pill and/or thyroid medication. They have no real answers or compassion for you and your situation and will be among the first to lump you into the “poor parenting” category if given the opportunity.

Mental Health? The psychologists and psychiatrists are happy to dole out psychotropic medication, acting as if they have the magic potion with which your child will be “healed.” When you continue your monthly visits, they will add a new medication with each and every voiced concern. Not sleeping? There’s a pill for that. Depressed? There’s a pill for that. Aggressive? Pill. Autism? Why, we’ve got a pill for that, too! What if the medication doesn’t work? The medication works, they scoff, it must be your parenting! Then, they suggest your kids go to a “treatment” facility to give you time apart, as if the best thing for your child is to be away from you. And what they will recommend if the child doesn’t have the same issues at the care center? Clearly, the problem must be you!

What about the teachers? Will they stand behind you when the psychiatrists want your children put in a home, and you are under investigation for questioning doctors? Most likely not. Schools blame the parents more than any other institution, on almost an hourly basis. Kids misbehave, don’t listen, aren’t respectful, don’t get their work done, eat poorly, dress poorly, and score poorly on tests. Could it be the teacher’s fault? Nope. It’s always the parents.

Child Protective Services: Are they there to protect your child?  They are there to protect them from you. And they get bonuses for adoptions out of foster care, which is an incentive to get high numbers of children in the system. Do you think that’s motivation enough to exaggerate conditions in the home? They have the same mentality as the rest: no parent can raise a child “the way they should.”

We are surrounded in this world by an illusion. The illusion is that there are professionals out there to help you and your family in time of need. In reality, the places you go to for help have already made up their mind that you are the problem!  Our only choice is to come together as parents. We need to stop the back-biting, the glares, the eye-rolling. We need to stop and think when we come upon a questionable situation that maybe we have not walked in that person’s shoes. It is possible we do not know the entire story from just one incident.

I remember when I first started working as an aide for the public school system. My son with autism was nine. A comment was made by another aide in disgust about how a special-needs child’s parents never taught him how to dress himself. I thought about my child.  I was still helping him to get dressed in the morning. It wasn’t because I wanted to do everything for him. (Do people really think we want to have to do everything for our kids?) Don’t you think it would be a heck of a lot easier on us if they could do simple tasks on their own? Don’t you think we’ve tried? Maybe we are still trying?

greenbean4My son always had a hard time waking up in the morning. When we were rushed for school, I would wait to wake him up at the last minute, so he could get as much sleep in as possible so as not to be crabby throughout the day. Oftentimes, it was easier and faster to just put on his shirt and shorts quickly and finish getting the family ready. I’m sure all parents have done this with toddlers. The problem is, these kids with special needs sometimes stay in that toddler phase, where their fine and/or gross motor skills are not fully developed, and it takes lots of time and effort to do simple tasks. While I’m worried about clean, matching clothes, a bathed child with brushed teeth, a good wholesome lunch packed, homework and notes in backpack and getting myself and my other son ready and out the door to get to school on time, I failed to think about the importance of slowing down and having the patience to wait for him to dress himself! Once it was pointed out to me, I made an effort the very next day, but it honestly had not occurred to me before. You get used to a routine and life goes by quickly, especially when you are doing it alone.

That is one small example, but I think all of us could think of something in our lives that others would judge unjustly, which goes for the biomedical community as well. We have learned so much about the poisonous things surrounding us in our world, that when we see a kid drinking a Mountain Dew and eating Doritos, it can quite literally make us sick. We have to remember that they just might not know what we know. They aren’t as far into their journey. We need to have compassion to help those who have not been awakened yet. The next time we see an out-of-control child, we have to be less likely to judge the parenting style and more concerned with why the mother doesn’t have the tools to cope and how to get them to her. Some things we see so clearly, but there was a time for us when it wasn’t.

When starting on a GFCF diet, my boys ate a lot of plain Lay’s Potato Chips. I cringe even admitting it. But, it was the best I could do at the point I was at in my life. I would have been broken-hearted if a seasoned biomed veteran had called me out on that mistake. It may have discouraged me from trudging on. It’s a lonely world, and desperately lonely when you feel you do not have the understanding of someone you thought for sure would have your back.

greenbean5

So be kind. Be patient with other parents, especially ones who are new to all this. Be generous with your knowledge and experience.  They will get there. It just takes time for some. We have to protect ourselves and each other from the injustices of those in authority positions who don’t care about us. Remember:  We don’t matter to them. We are no more than a mere inconvenience.

Temper Tantrums

And when you see another parent struggling, remember: you may not have walked in their shoes.

~ Green Bean Girl

*About the author – Green Bean Girl is a Midwestern mom living in the South. Her oldest son is 16 and has been on the autism spectrum since age two.  Her 14-year-old son was diagnosed with Sensory Processing Disorder, Anxiety, and Aspergers two years ago.  She worked as a special education assistant, but is now homeschooling her children full-time. She is the co-author of Evolution Of A Revolution: From Hope To Healing and is a member of TEAM TMR, a not-for-profit organisation created by the  founders of The Thinking Moms’ Revolution.

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57 Responses to Think Before You Judge An Autism Parent: Until You’ve Walked in My Shoes

  1. Alexa Praeger says:

    My 14 yo son was diagnosed with HFA at age 3 1/2 yo. He was difficult to handle starting in infancy….we just did not know why we were so overwhelmed by this infant. At age 2 I was suspicious that he had autism and that was then confirmed at 3 1/2 when we went to Kennedy Krieger in Baltimore. Our regular pediatrician was no help. Our son was not babysittable for years…..we knew that no one but ourselves would have the patience to handle him.
    HOWEVER …..I want to give all of you out there some words of encouragement…..He is now 14 yo and AMAZING. We tried lots of different therapies, I invented some of my own and I do not know what exactly made the difference. Yes, we let him sleep with us…..and he STILL sometimes does. We have an extra queen size mattress in the master bedroom. Yes I had to dress him way beyond the years others thought this was OK. He still wears pull up shorts and pants (yeah for Lands End Cargos!!!!) He still does not do buttons..Yeah huge tshirt wardrobe. Hw still does not tie his laces…Yeah slip on shoes, crocs, moccassins etc….. But he is fantastic. Yes he is socially awkward, but he can converse about anything. Yes we had to pull him out of public school that wanted to treat his idiosyncratic behaviors with punishment and SPED programs. But now he attends a small progressive alternative school, expensive yes, but not special ed. SO there is light at the end of the tunnel. My son has come such a long way. Be kind and firm. Emphasize language development and play skills/social skills. Embrace the fuss and the tantrums. Be prepared to leave any venue at a moments notice. Ignore the stares and judgement of strangers and family. Develop a personal MANTRA to keep your self calm during moments of crisis. Do not lock your child in their bedroom by themselves (as one therapist suggested to us.) Hug your child everyday and tell them you love them!

  2. Jen says:

    Thank you so much for saying what needs to be said, and shared, much more often.
    In my case, let’s see, where to begin.
    My own father was a difficult, challenging, smartass in his youth.
    My brother was recognised as gifted, and then was passed on potential alone, even if technically failing.
    My son was consistently a challenge to explain, as nobody had handled one quite like him. Bright, but introverted and very independent.
    Family doctor sent us to a specialist, who rubber-stamped ADHD and assured me this med would allow the kid to focus and take advantage of all the special ed efforts being made for him.
    That ADHD med led to a cocktail of 3 side-effect-treatment meds, while the teacher moved my son from front-row with assistance to back-row out of the way now he was quieted.
    My family doctor agreed with me, when I dropped all his meds and told the school if the squeaky wheel gets an education, I’d rather have a healthy happy C student than an A+ zombie.
    Eventually we got a reassessment: Aspergers. My little professor, indeed. That one fits, and he isn’t being doped out of it.
    We’re in Canada; police here have a registry so that a very literal teen who won’t look a cop in the eye and appears to be avoiding a simple question can be recognised. My boy doesn’t have a record, although he is on their records from a couple of silly things.

  3. A proud mother Namita says:

    Green Beans Girl : I am 100% Agree with you and I feel like u were telling my story. My son is 5.5 yrs old with Moderate Autism. I don’t have enough words to say a big Thank you to you dear. My son feels lonely He has no friends. He does hv a baby sister but she is little so can’t really play as much as he could hv with similar age group. I do everything u hv written above such as dressing him for school feeding him like a baby to make sure his tummy is full and will hv a good day. Even though he can dress himself eat himself but I had to do most of the time. He doesn’t hv social skills he screams yells at public places Thanks Deborah for ur comments here. I already hv 2 tshirts printed with Slogans for myself I will definitely buy 2 for him. Just to show to those cruel eyes in public who makes comments at us stares at us differently. Thanku GOD BLESS YOU. Kind regards Namita

  4. Mary Kostka says:

    One profession that is worth checking out is an Occupational Therapist with experience and training in Sensory Processing Disorder. Most kids with Autism have sensory processing problems that are the root of many of the challenges parents face – from eating , dressing , tantrums etc and therapy can help a lot (besides it is fun therapy!). To locate an OT with this training go to SPD network. I salute all parents raising children with autism – no one has a clue how hard it is! These kids are amazing and wonderful and challenging :-)

  5. ZS says:

    This was our experience with CPS. We had a pediatrician report us – because our son was healthy with normal development – when he had been diagnosed in the same clinic by two pediatric specialists with an allergy disorder. The CPS worker informed us that she was “supposed to do what the doctors told her.” When the doctor was questioned, she said she was “required by law to report a concern.” This is the fundamental problem – we had one social worker pointing her finger back at the doctors, saying she had to do what the “medical professionals” told her, and the doctor pointing the finger back at CPS saying, it is only her lawful responsibility to report a concern, and CPS’s job to investigate. The feedback loop was an absolute trap. And it worsened with the addition of a psychologist who echoed whatever CPS said. I cannot speak to the intention of every doctor, social worker or psychologist, but I can tell you the “process” we went through in the name of protecting our child had NOTHING to do with protecting our child. Every time facts were brought to light to challenge all the lies flying around, a new case was created with new lies. The entire game was legal protection for themselves and protecting colleagues – CPS, pediatricians, and the psychologists that the state “refers” to are all quite good friends. We were fortunate in two ways, that we had a judge who actually held a legal standard – though in 68 days without our child and another 3 month investigation, we were NEVER given a day in court – CPS never once had to prove they had any right to take our child. To get him back, we had to settle or wait an additional 3 months to even get a trial. The second was that we actually had one of the very few and far between decent foster families that worked to advocate for our son. That ended with them calling his lawyer, and CPS in tears begging to send him home because they felt like they were killing him, and the doctors were not taking care of him – all really to no avail. That just furthered their work to legally cover their butts. The system IS corrupt – is every person? Maybe not. In our case, I think some started with good intentions or honest concerns, but still lied and twisted every angle to achieve what they wanted, and then it was ALL legal by the end. The doctors started hiding lab results, then refusing tests, and lying in reports back to CPS. CPS called their own psychologists that defied their accusation “biased” and then began withholding referrals to their business. It was all so irrational, it was maddening, and every person out there with a special needs child ought to be terrified, because all it took for us was a 1 yr healthy child check, with a perfectly healthy child, with a random ped, to lose our child for months – and it easily could have gone the other way, without a good judge. The vague terms of “medical child abuse” and Munchausen (don’t fool yourself into thinking anyone will look at the DSM to throw this at you) are a threat to every parent. You have NO rights.

  6. Totally get it. I have 7 year old autistic twins. Today we had a meeting to see if my kids were able to go to the day care on post. It was a nightmare where I was belittled, talked to like a 5 year old, and told that a GF diet is deficient in macro and micro nutrients. Oh, and that GF is a preference and they don’t honor preferences. We need more awareness and for more people like us to SCREAM OUR STORIES until society finally gets it. Thanks for YOUR story.

    • momofsomes says:

      That is patently awful! My 5-year-old son’s Special Ed preschool teacher gave me a hard time initially, too. She mentioned the lack of research surrounding the gfcf diet, complained regularly to me about how hard it was for my DS that he couldn’t eat what the other kids were having, etc. 3-4 months into the diet there had been such a dramatic change that his teacher, the speech, therapist and OT described him as a completely different child. They actually attributed the changes in behavior to the gfcf diet in his IEP! It was that dramatic. We just had our end of the year class potluck last week and the teacher had specified that parents “please bring foods/snacks that are gluten and casein free.” The speech therapist brought gf vegan cupcakes from a bakery that just opened. I nearly cried.

      Don’t give up!!!!! Whether or not the school is initially supportive or not, we KNOW what is right for our kids and we cannot let them intimidate us.

  7. patrick says:

    How can the child with or without disabilities develop motor skills and direction if they never have to do it themselves. To me it sounds that you are just trying to make your life easier.

    • ProfessorTMR says:

      I’m sorry, Patrick, but you are clearly illustrating the point of the blog. Here you are saying, “you are just trying to make your life easier” without trying to understand how hard her life is in the first place. Believe me, if you can make a statement like that you have not even come CLOSE to imagining how hard life can be with three children on the spectrum, two of them severely affected. I suggest you read The Thinking Moms’ Revolution: Autism Beyond the Spectrum, or Team TMR: Evolution of a Revolution to get some idea of what you’re judging. When your life begins to approach the difficulty of that of an autism mom (whose stress levels one study determined are comparable to those of combat veterans), then come back and we’ll talk.

    • Jen says:

      Do we tell the kid in a wheelchair to get up and run a few laps like all the others can? Do we tell the blind kid to shut up and read it off the blackboard, there’s no excuse when the whole class knows how?
      There are visible, and other, difficulties. If you think the less obvious ones are made up or exaggerated, I’m guessing you are not a parent. Nobody would wish any of this on a loved one.

    • Kim says:

      Thank you for proving the point of this article.

  8. Mom of six says:

    I have an 18 yo son on the autistic scale. Just don’t forget that it is okay to have expectations for your child regardless of their “issues” as we call them. As mentioned above, just because a child has autism doesn’t make it okay to claw another child who was trying to help her. For the mom to simply yell, she has autism, doesn’t make it right. She may not have been able to stop the behavior, but a “My daughter has autism and I’m so sorry that she hurt your child who was trying to be helpful” would have gone a very long way.

  9. Allison says:

    I have family that is autistic, but my own children are not. The other day though, I took my kids to the park and an 8 year old obviously autistic child started following my 2 year old around poking him with a stick, trying to pick him up, and pushing him down. I was being patient with him, knowing he probably wasn’t meaning to hurt him, but was frantically searching for his mother. We were the only ones at the park, but there were several houses and apartments nearby… I ended up leaving 10 minutes after bringing my kids to play, and he went in the direction of one of the apartment buildings. For parents with autistic kids, how do you think I should have handled it? I felt awkward and didn’t exactly want to knock door to door and ask who he belonged to. Should I have called the police to help me locate his parents? How should I handle the situation when a special needs child is playing too rough with my kids?

    • Marcia says:

      I think you handled it okay. I would have just watched where the boy went. I wouldn’t involve the police unless the child seemed lost but it sounded like he knew where he was going. An unattended child with autism can be dangerous – to himself and possibly to others.

    • alicia says:

      As a mom of 2 with ASD and 1 without. I think you do good but I so hate that your children had to leave because of someone else’s child, special needs or not. I see your problem because I too hate to (let say) scold other peoples child but in this case I would have said something to the child, like he/she doesn’t like that or please stop. More than likely he would have stopped or wandered away (I hate to say that but it is true) as long as you will firm about.

      With that said shame on those parents for letting their child go to the park on his own, I have a 6 and 15 and I don’t let them out of my site. As Marcia said that is so dangerous these days, with ASD kids wandering and dying, and all the loons out there.

  10. Marcia says:

    I have two sons with autism. The older also has down syndrome and he’s non-verbal….so in fact, people can visibly see that he has special needs. My youngest is high functioning autism….he can speak and will generally listen to me. I also have an 11 year old daughter – who has no diagnosis and she is very smart and compassionate. A couple years ago, we were inside a McDonald’s Play Place and there was a little girl inside spazzing out and seemed to be stuck on top of one of the sliding tubes. My daughter went to help get her down and the little girl gouged my daughter’s face with her fingernails. My daughter was confused and upset with what had happened. So I approached the Mother (who wasn’t in the play place when this occurred). She screamed at me “She has autism!” and yanked her daughter away. I said to her “I have 2 sons with autism and when they hurt someone, I get them to apologize.” End of story. I wrote this because I NEVER LEAVE MY SONS UNATTENDED. I try to teach them appropriate social skills…..this woman was clearly upset and whisked her daughter away. I never saw the woman or daughter since and I hope that they are doing better. I’ll never forget this incident. As parents of children with special needs, we need counseling and parenting courses – just like everyone else does.

    • momofsomes says:

      Absolutely, I agree 100% with all of this.

    • Kim says:

      I do the same thing with my six year old son. If he hits his sister or takes things from other kids without permission he has to apologize.Sometimes it takes five minutes due to the fact that he throws himself on the floor and I have to make him stand up. He has speech problems, but I prompt him.

  11. Deborah says:

    Helpful hint: When your child has a meltdown in a public place (ex: Walmart) and is screaming and thrashing around on the floor; first and foremost make sure your child is safe, then hold a small homemade sign up that says: ‘My Child Is Autistic’ giving your child time to regroup and those nasty looks and comments from others…gives them time to understand what is going on and not be so judgemental about your parenting. Those that continue to make nasty comments you can’t reach anyway so don’t even try. You’ll probably never see them again anyway so who cares. Feel sorry for them instead of feeling angry with them. They have the problem not you. I have 2 grandsons on the spectrum and with the youngest we used to have to leave our shopping cart, pick him up and leave to avoid any further disturbance. A friend gave us this helpful hint. It is amazing how well it works for you, your child and people who just don’t understand what is going on. Give it a try. Great article and I agree with all you have to say and admire your courage. Do what is right for you and your children. That is what matters most and keep up your strength and support; God knows you will need it all.

  12. MDJ says:

    Thank you for sharing. I have been blessed with a 9 yr old, he was diagnosed with Apurger’s and sensory disorder. Keep sharing your experience if we all do this ut will continue to help others to identify and be able to relate to others and don’t feel alone in this journey. …

  13. Caroline Arbon says:

    Absolutely loved your post explaining parenting a specials needs child. It described my situation to a tee. Well said. Thank you for sharing.

  14. alicia says:

    As I am right now dealing with cps, I agree with the article. I became a full time mommy to my stepdaughter 3 yrs ago and since than I found pictures of her doing sexual gestures with her mom in the pic doing it with (she was 6 in thepic) she cried for help to the point of running away on a visit with her after witnessing domestic violence, her mom was pulled over bf was high violating the protection order he went to jail the mom was drunk cops paid for her taxi home and we begged cps to protect her ans her sister they did nothing than 5 months after her domestic violence arrested she was arrested for child abuse/ neglect after her 5 yr old daughter ran away cause she was so wasted she drove 30 mins and passed out… but cps wouldnt protect my stepdaughter on her visits… but than 5 months after that her mom reports to cps we are homeless, he is on meth and I attempted to kill the kids… but yet here I am.laying in my bed in the apartment I have lived in over a yr my kids are perfectly healthy nothing wrong with them and he has passed multiple uas… but cps is concerned about us neither of us have any drug, domestic violence or any record for that matter but we are being watched over like a hawk and the case worker believes every word out her mouth even though I have a paper trail to back up everything… and what she accused me of was soo bad regardless of my kids being perfectly fine I am.not allowed to be alone with my kids… to me its is a bunch.of bs… who should be listened to the drunkie with a record or the full time mommy with a job and no record??? Like reallywe have kids dying all the time because cps listened to the wrong person… anyone heard of the case ab the two boys who died in mesa co?? Guess what cps had recerecently looked into claims on the mother from the concered grandparents after their sons death and how the mom was acting cps did nothing month or two later boys are dead for exact concerns family mentioned??? Like really

  15. ROSIE says:

    you are talking about my grandson. I AM NEW AT THIS WE FOUND OUT ABOUT A YEAR AGO . STILL LEARNING WHAT TO DO AND HOW TO DO IT. ARGUE WITH FAMILY SAYING THAT WE SPOILING HIM ,LETTING HIM HAVE HIS WAY.

  16. chris says:

    Im not a mom but I am a father and I have been turned in to cps by random people for my son running through stores and almost knocking people down and u grab where u can when they do this and alot of the cps workers dont even have kids

  17. Jem says:

    So sorry! My boy is now a grown, resourceful, independent man. He has a good life, friends, and a successful career. When he was 5 and until he was in his md-teens, the professional world that was supposed to be supportive of our family regularly said I was parenting him wrong. They wanted out of their sight, recommended he be institutionalized, predicted he would never live independently or function without drugs. They were wrong. I loved him so much. I tried so hard. I was so alone and so tired. But I stuck to what I believed…that he was a wonderful kid, a sweet loving boy who never deserved his torment, that he had a right to rage at the unwelcoming world. He made it. He’s on his own and happy. And finally I get peace and quiet and sleep! Stick to what you know is right – Loving him with all your heart and fighting for him. I wish you the best, and wish the outrageous responses would disappear. People are so ignorant and cruel. But you are not alone and some of us who glance your way are truly wishing you well.

  18. Shane says:

    Thank you for writing this frank and real piece….. I work with children and parents with special needs. When you say who does a parent turn to for support. I agree Dr.’s dole out meds and therapists do a lot of talking. This new era of coaches are what help me get through my “stuff.” What has worked for me is what I use when I support parents. It’s unconventional and it works. Sometimes it’s giving space to a parent to have tantrums, to release energy, sometimes it’s a radical dance session. I’m trained and educated in a lot. But what I find works for children also works for parents. Finding an outlet to spend the pent up frustration and energy so they/we can start anew. In society everything must “look” a certain way, or it’s considered out of control. Well that sh*t doesn’t work anymore. Many things are out of control and it’s a lie to make it look all nice and pretty. Everyone needs support! I am humbled beyond measure with the parents I work with. Sometimes I just listen, sometimes I facilitate relaxation. What I know for sure is Parents need time to express and release just as much as children. Thank you for being brave and unapologetic….

    • Marcia says:

      Your comment is so true. My husband and I try to regularly play competitive sports (him – baseball & hockey; me – volleyball). I feel amazing after pounding the ball around! I also like to take bike rides – by myself. I suggested counseling and parenting courses – which has taught me about finding “me” time and self-care. It helps me tremendously!

  19. Mary Moran Heller says:

    Thank you!!!! You just summed up exactly how I have been feeling for the last 14 years. It feels so validating to read your article. I have learned to just say to myself when criticized by….everyone, “thank God for them they have the luxury of having no clue what it is like.”

  20. Dr. Eric says:

    Green Bean Girl, I’m sorry that you have had such experiences. I wish yours were the exception, but obviously (as anyone reading your blog will likely attest to), they are not. However, I am concerned that you have overgeneralized the reaction from doctors and mental health specialists. While I don’t doubt that you and your family have had negative interactions with these professionals, it doesn’t mean that respectful, understanding, and empathetic individuals aren’t out there. If you haven’t found a doctor for your children who you trust, makes you feel comfortable, isn’t always looking to blame someone, and isn’t always looking to prescribe a new pill, please consider to keep looking. They’re out there!

    • Luna says:

      Dr. Eric,
      I hope you’re right. However, they seem to be few and far between. I haven’t found one yet. My latest experience with doctors was one telling me my daughter was too young to have Hashimoto’s. She’s 19. She has positive antibodies in the hundreds. He says that’s bullshit, and that it would be in the thousands if she really had it. He also told us she doesn’t have Celiac Disease. Because her ttg is normal. Of course, it’s normal, she’s on a gluten-free diet. He said that her eating habits were irrelevant.

      And you know what? He’s not even close to the worst we’ve seen.
      Examples:
      - The one who told me to feed her cream of wheat – with celiac – just to get her iron up.
      - The one who missed my mother’s cancer until her kidneys were done.
      - The one who mocked me about my weight (I’m 180lbs at 5’7”)
      - The one who told me that fibromyalgia is “a bullshit diagnosis”.
      - The one who called my daughter by name, and when she turned to him, said, “See? That child doesn’t have autism. You are simply spoiling her.”
      - The one who said, after hearing I have three ASD kids, “OMG! You’re not having any more are you?!”

      I could honestly go on for hours.

      • Dr. Eric says:

        Luna,

        You’ve obviously had some awful experiences with doctors as well. Unfortunately, not all doctors are equally empathetic (or apparently, equally knowledgeable! There’s even a specifically described juvenile variant of Hashimoto’s…) While some of these incidents may be due to the doctor simply being an unpleasant person, there are other major factors to consider. Doctors frequently are very analytical people, with a belief (either conscious or subconscious) that everything can be explained by science. Therefore, they don’t deal well with uncertainty. For example, when a patient walks into the clinic with a combination of symptoms and signs which fails to conform to a specific pattern taught in medical school, some clinicians assume that the reporting of symptoms is wrong, rather than acknowledge the limitations of their own understanding, or the limitations of medical science in general.

        In addition, a complicating issue that I see frequently is that with some uncommon diagnoses or new treatment approaches, patients will do enough research on their own to know more than the doctor about some specific details, yet not necessarily have the breadth of knowledge and experience to put those details into context.

        So we end up with a doctor-patient dynamic in which the doctor refuses to acknowledge that he/she may not know as much about a specific disease as the patient, while the patient has trouble accepting that the doctor may have a better informed perspective even if his/her specific knowledge of the details is less complete.

        Of course, what should happen in this circumstance is that the patient should tell the doctor what he/she believes and/or has researched. The doctor should listen completely, empathetically, and non-judgmentally. The doctor should then explain where the limits of his/her knowledge on the subject are, and then offer to research more thoroughly the information the patient has brought, and meet again in the near future to discuss it. And the patient should trust the doctor to make an honest attempt to learn more about the disease and/or test and/or treatment in question. When I’ve been able to take this approach, I’ve found that sometimes I learn something new and important that I was previously unaware of, and which I am glad the patient brought to my attention. But even when my research refutes the opinions of the patient, when I bring that research back into the discussion, and show the patient that I’ve seriously considered their thoughts, it’s always appreciated (even if we don’t “agree” in the end). While this is an optimal approach, unfortunately, all of this takes an enormous amount of time. Given current reimbursement models in US health care, this is simply not practical for most primary care providers, which contributes to dissatisfaction and distrust of medical professionals, particularly by patients with complex conditions which are either not easily treatable, or fail to conform to traditional models of disease taught in medical school.

        The bottom line is that while some may still simply be jerks, even well-intentioned and generally respectful doctors can leave patients feeling unheard.

        I wish you the best of luck in finding a medical provider that can meet you and your family’s needs!

  21. Lisa W says:

    Having spent the last 12 yrs in/out of the family court system bcos of a narcissistic ex&his sociopathic wife who have gradually alienated our daughter from me, I have learned quite abt about this failed system & all those associated w.it. And what was said abt CPS in this article is 100% true! Ive met MANY parents all over the world who’ve had their kids stolen by cps, by sadistic ex’s, by false reports, by many other evil means&reasons just 2 fill their quotas&recieve thier bonuses. CPS is not as child friendly as they want u 2 believe! And many, MANY of these are GOOD families that never belonged in the system 2 begin with! I was very lucky w.our caseworker, as she did see thru the false charges my ex&his wife kept filing. And they were barre from filing anymore against me. But those kind of caseworkers seem 2 be few&far between!

  22. nhokkanen says:

    Great article that captures the unfortunate experiences of autism parents in dealing with non-affected people. I totally relate to the sometimes overwhelming feeling of our children and ourselves being misunderstood at almost every turn.

  23. Holly says:

    I used to allow Lay’s when we were GFCF, 5 years ago! Nobody’s perfect!

  24. thank you for this amazing insight Green Bean Girl… and for not judging me or calling me out for our occasional bag of Lay’s potato chips!! They ARE Gluten free, aren’t they ;)

  25. Debbie says:

    I couldn’t have said it better myself Jessica. CPS workers do not get bonuses for removing children, not in NY and I can’t imagine they do in any other areas of the country. And to suggest that CPS workers exxagerate situations in order to get those bonuses suggests that those that do this very difficult job are generally cold hearted, cruel people. In every job there are those who may not be in it for the right reasons but to lump all of them into the same category is doing the very thing you are asking people not to do in this article, JUDGING!

    • ProfessorTMR says:

      The bonuses are not for REMOVING children. They are for getting them adopted. You can’t get a child adopted if you don’t have one, though, so there is some incentive, and I’m sure SOMEONE is susceptible to the incentive. However, I agree that judging someone as automatically bad, evil, or even against you is a bad idea all around. We are ALL judging someone, and we can ALL learn to do better, including Green Bean Girl. I remember a priest giving a sermon on the “Judge not lest ye be judged” passage in the Bible. He said, “Where are YOU judging? Are you judgmental of judgmental people.” I have to admit that one hit home. :-) The fact is that whether we’re special needs parents, parents, doctors, legislators, CPS workers, or anything else, the best thing we can do is see the humanity in the other’s eyes and do our best to connect on a human level.

    • Green Bean Girl says:

      I do apologize Debbie and Jessica if I offended you with my comments. In my personal experience with CPS through my friends and family members, and with the current trend shown in the media, I do stand by my feelings. However, it is definitely not fair to say that “ALL” participate in this type of behavior. I do not think it is judging if it is a fact that the persons I have been involved with have done these things. I will take your word for it that not everyone is this way…it has just not been so in my experience. Thank you for letting me know…it makes the world a little brighter knowing not all hope is lost :)

      • ZS says:

        I don’t know Green Bean Girl, I think you were spot on. Not only did some CPS workers lie and then take our son (special needs with a rare allergy condition) but then when we became friends with the foster parents, we were told that the CPS workers would call them up with a potential child and then when it fell through would say things like “well, we’ve still got time for our investigation, we’ll keep trying.” as they were apologizing to the potential foster family for not placing a child. That makes me sick to my stomach.

        Is there, somewhere, a good CPS worker? Sure. I’ll concede that somewhere they exist. But I haven’t met one.

        I used to judge, and now I’m the one being judged. If anything, this whole ordeal has taught me to be really patient and far less idealistic with people. I’m way past trying to do it “right,” and now I’m just trying to do it.

      • Cathy says:

        While it is true that not all CPS caseworkers are “bad”. It is true that since the 1990s the trend is to take children and put them up for adoption. The federal government pays a stipend for every child that is adopted out. Each local jurisdiction does get money from that stipend. Also, individual caseworkers have no say in what the outcome will be. They can make recommendations but the fate of a child is up to their supervisor or even administrators over the supervisor. Special needs children do bring in more money than typical children. It can vary from jurisdiction to jurisdiction how “corrupt” the agency is.

    • Sun Tan says:

      Yes, they get 500 dollars bonus for every child they take away from the parents. I am sure that nothing so wrong like this can happen in NY. Sigh.

      There is no good CPS, not in USA, not anywhere else.
      I am niece of a CPS and I do know these things for a fact.

  26. Paige says:

    I really connected with your article. I have a 18 yr old son (twin) who has CP, but also sensory issues. Through the years of countless doctors visit, I have learned to put up that wall, and deal with the ignorance. But, I agree that our society should be more tolerant, patient, and understanding…its not an easy road.

  27. Tracy Jones says:

    Love this article so true to each word. I have a son with adhd and a severe learning disability. He’s now 14, and I struggle from day to day with him from violence to verbal the frustrations on him and our family. I am slowly learning with him and teaching my three youngers too.

  28. Lori says:

    Wonderful article! Thanks. As a parent of a 20 year old I’ve heard it all, especially from family who never lifted a finger to help. Always told what I was doing wrong. Actually told by my father that I wasted so much time on my daughter (autistic) that my son (auditory processing disorder/ADHD)is no better than those @#% in East Cleveland. He just graduated college so stick that up your @$$.

  29. tiffany says:

    my son was recently diagnosed with social communicative autism, and he happens to have what is called frequency deafness. I have 3 other children to get ready everyday your dressing mayhem sounds like me in the am. The worst is when people dont know my child cannot hear them and thinks hes ignoring them or sometimes myself. we are taking it one step at a time though.

    • Green Bean Girl says:

      Hang in there, Tiffany! I understand your frustration…keep educating them, and hopefully they will soon understand :)

  30. Jessica says:

    While your article is well written, when you say CPS gets a bonus to get kids adopted out of the foster system (this may be true in some areas of the country but not all) so they have an incentive to get more kids in the system couldn’t be further from the truth. At the end of the day the goal is to have the children in a safe environment. Some times that is with their parents, or relatives or foster families. However, for a child to be adopted out of foster care, parental rights must be terminated and all other familiar relationships must be exhausted. Also, terminating a parents’ rights is a long and court driven battle. You can’t just terminate because you don’t like a parents’ style of raising the kid(s). There must be an ongoing safety concern (like substance abuse while the parent is refusing treatment, doesn’t have a job and is abusive-all or a combination must be present, not just one).

    I just think it’s unfair to paint the CPS system in this light because there is a lot of good that comes from it. Especially when parents wouldn’t normally have access to certain services otherwise.

    • ProfessorTMR says:

      I agree that there are many CPS workers who work hard and do a great job in order to help children and families. Green Bean Girl is definitely generalizing here, and it isn’t fair to the many conscientious people involved in CPS. However, there have been a number of horror stories recently about parents having children taken away because someone, often a doctor, disagrees with the parents’ choices for their child’s medical care. Stories like that of Justina Pelletier and her family, who quite frankly seem to have been severely harmed by the Massachusetts version of CPS, have many special-needs parents understandably scared.

      • Linda says:

        Wait, this case was started by a complaint by the Doctors of Boston Children’s Hospital, are they getting money to have children adopted??? CPS has a horrible job to do! They damned if they do or damned if they don’t. My son worked for CPS in California, and I never so happy when he left. By the way, a friend of his, another Social Worker at CPS saved a child’s life when the mother died at home and he was left alone.

      • ProfessorTMR says:

        Boston Children’s Hospital isn’t adopting children out, but that doesn’t mean that they do not have unethical reasons for taking children away from their families. Justina spent 9 months at Boston Children’s Hospital. Her family had a good insurance policy. Who knows how much money the hospital made off of one child who came in just to consult with a gastrointestinal specialist? In addition, the psychiatrist who diagnosed her with somatoform disorder (contrary to the diagnosis of two other psychiatrists), specialized in somatoform and could well have been looking for subjects to beef up her research credentials. I agree that working for CPS cannot be an easy job. There are parents who abuse and some who kill their children. The lines to draw are not easy.

      • Linda says:

        My main point is that is CPS had ignored Boston Children’s Hospital in Justina’s case and she had gone into a coma or died who would have been blamed? CPS, no doubt.

        Frankly I think the parents should have the final say, how their daughter should be treated for her medical condition. No one know her as well or loves her as much as her parents, or is responsible for her like her parents.

  31. Julie L. says:

    I wish that we could have the extra hands to accomplish these tasks. I need to work on so much with my daughter but dont have enough hours in the day. It takes a willing and non judgmental village to raise our kids. If I did all of the things I NEED to do in terms of development and the basics, I wouldnt have time to just be her mommy and spend time with her. So some of the developmental stuff goes by the wayside, sigh! So whenever I hear these “you should be doing x with her, ” it makes me feel guilty and then angry. They need to walk in our shoes.

  32. Even without an injured child, some of these criticisms are heard. It’s so difficult to “live differently” in today’s society where any- and every-one thinks they need to/should have a say about another family’s choices or experience :/

  33. Erin says:

    Absolutely! and always a good reminder even for myself and to keep on learning!

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