autism · Uncategorized

Why it’s okay for parents of autistic children to not be okay…

I have little tolerance for first-time moms who feel it’s their need to tell me how to parent my four kids. Your baby is a month old! Don’t tell me how to parent my 10-year old.

To be honest though, I was that first-time mom. I thought that my background in psychology and child development gave me enough knowledge to be able to talk about kids – and as soon as the umbilical chord was cut on my first child, I thought I had the RIGHT (even the responsibility) to say the things I knew.

Boo.

What’s worse? People who don’t have children telling me how to feel about what happens to my kid. Over and over again in blog posts, some even directed at me personally, I am told that I am a bigot for saying that “autism is hard.”  They tell me that I don’t accept my son for who he is because I had a time of grief after his diagnosis, and that I hurt when his autism causes him heartache. They tell me that I am being “selfish,” that I am grieving my false expectations, or the “perfect child” I didn’t have. They say, “no, it has nothing to do with his autism. It’s you.” That I need to “get over it” because it’s harmful to my child.

Their advice? Parents should be able to get their child diagnosed and just move on. There is no need for grief; all we need to change is our attitude. Acceptance means that we have to be okay with our child’s autism from the get-go.

There are many things I can agree with. I do not hate autism. I see Casey’s autism as an integral part of who he is. I see the many unique abilities that it adds to who he is. I love him for who he is – not because of nor in spite of his autism. I love him because he’s my son and just a fantastic kid. I also want other people to love him for who he is, autism and all.  I want him to grow up to be proud of himself, to accept himself.

In a way, they’re right, part of the grief I had at Casey’s diagnosis was over What Could Have Been. Yes, I was sad because I had mapped out a life for him that had all but gone out the window.

When Casey was diagnosed, they couldn’t tell me if he’d ever talk, potty-train, or read. I was crushed. I am a mother. I want all of my children to have happy, wonderful lives. Back then, I had a different view of what success was, and even of what happiness in this life meant. My view on all of that has shifted radically. I believe now that what matters most is that my children are happy and are doing their best in this life.

But it was a journey. A journey that each parent who has a child with special needs must travel. To tell a parent that what they are feeling is wrong doesn’t do anyone any good. I don’t care if you have the same diagnosis as the child. Until you’re a parent and go through it yourself, you just can’t understand.

Sure, these bloggers get along well. I see how they articulate their ideas in their posts and their hateful emails to me. Some have gone to college, have found someone to love, etc. That doesn’t mean that that’s the only future.  And even if it is, it doesn’t mean that I can’t hurt a little when I visit my son at school to find him eating alone. That I can’t be sad when he’s sad. That I can’t also feel anguish that he feels when he’s in the throes of a tantrum he can’t climb out of. I feel this not because I hate his autism, I don’t; I feel this because I am his mother.

Invalidating the feelings and the journey of parents does nothing to help children with autism. It only creates more distance between the parents of autistic children and autistic adults. We need the wisdom and the perception of autistic adults. We learn so much from them. We need their perspective on what our children see and feel. What we don’t need is to be told how we should feel by people who haven’t walked a mile in our shoes. That the feelings we have are wrong.  They are not wrong.

I have moved to a place of acceptance with Casey’s autism. My journey to get there helps me empathize with parents of the newly diagnosed. Again, this is an empathy that some of these autistic adults don’t quite understand – not because they’re autistic, but because they haven’t traveled this journey as a parent.

I am in no way saying that every autistic adult says these things or even feels this way, it’s really a very vocal minority, but I have found that autistic adults who have children are kinder and way more understanding of my emotional journey. They get both sides: that autism can be an asset, but also that we don’t want our kids to have a tougher time in this life than is necessary. I think that comes with parenting ANY child, not just autistic ones.

When I was a first-time mom, I thought that I had it all figured out. I thought that my experience with nieces and nephews, with babysitting and all of the books I read and courses had taken had prepared me for parenthood. While it was helpful to have that knowledge, it did nothing to prepare me for what I would FEEL. Feeling is good. Feeling is necessary. What we feel as parents helps us think more of our children. It moves us to do more for our children. It forces us to step outside our comfort zone and advocate for the needs of our children.

I am not sorry for the feelings I had after Casey was diagnosed, and they are absolutely no reflection on how I feel about HIM. It was okay to not be okay for a while…and even from time to time now.

 

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41 thoughts on “Why it’s okay for parents of autistic children to not be okay…

  1. Thank you for you posts and letting me know its ok to feel what I do. Sometimes being a mom of a child with autism is lonely because no one else around me can understand. It is nice to know that my feelings along this autism journey is felt by others. When my son was diagnosed I was sad, mad and scared of what would be but that in no way changed how I felt about him. I love both my kids more than anything in this world. At 6 years old he has accomplished so much and I am so very proud of him. Feeling sad when he gets so frustrated shouldn’t be a negative reflection on my love for him it is a reflection on the fact that I love him so much I don’t want him to struggle. As a mom of an autistic child I appreciate your honesty.

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  2. Exactly. When my son was diagnosed, I did grieve. I grieved because I had no idea of what his potential could be. He was non-verbal, having frequent meltdowns, night terrors, was delayed in many areas and, in general, did not seem as happy as his age-peers and had never seemed as happy as other children & babies of his age. Life was constantly full of stress and anxiety, because we never knew what his reaction to various situations would be & we often feared the worst, based on so many unhappy (for him) experiences. Being told that he had a disorder that had no clear outcome at all didn’t do much to alleviate our stress. We were relieved to finally know what was causing so many issues, but nervous about if we were doing the right thing at all times to help him.
    Things are different now, a year later. He is a much, much happier child. He’s made amazing progress in communication, in motor coordination and in general, being able to adapt to change. He still struggles with some transitions and changes in routine – and some days are harder than others for him (and therefore, for us). But it is better. But I don’t think any parent would want their child to have to go through the anxiety and discomfort that is often present.
    And for parents whose children are severely Autistic, barely able to communicate, affected by other comorbid conditions that make most aspects of daily life a challenge – they definitely should be allowed their grief for their child – not out of selfishness, but out of love.

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  3. this is why i am not okay…:

    ~ when my daughter walks alone.
    ~ when no one calls her to hang out.
    ~ when all she wants is one true friend, so to not feel so alone.
    ~ when she struggles with feelings of intense emotion that she can’t express.
    ~ when her heart breaks.

    these are the feelings i had/have for my grown daughter, who is NT – it frustrates me to find that similar feelings i have for my younger daughter, who is autistic, would be considered pitying. as a parent, i think one always want the best for their children.

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  4. My child does not have autism, however his struggles are similar. Thank you for sharing your story. Every parent with a special needs child takes a special journey filled with many emotions and “roller coaster” days. Thank you for validating those days and emotions.

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  5. Indeed… one of the first things I tell parents of newly diagnosed children is that acceptance will come, in time. It’s not nor can it really be an instant thing for most people. Every parent has the right to feel how they do just as every autistic has the right to feel how they do.
    If a child, or even adult, feels like a foreigner within their own group of friends or even family, then that person’s loved ones have every right to feel for them too. That’s what empathy is all about. That’s what love is all about.

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  6. This is a really great post, Lexi. This whole business… it IS a journey. That is exactly how I have tried to describe it to others. I think most people honestly never give Autism much serious thought until one of their own (or more – 2 in my case) children ends up on the Spectrum. *THAT* is when you really come face to face with how much you *thought* you knew, how well your emotions will stand up to the task, and how ready you are to discard all your previous notions of what parenting meant, and start adapting to a new way of developing relationships with your children.

    I think it takes a long time, maybe years, to get to know our kids a little better and to feel like we’ve immersed ourselves in enough (it’s impossible to take in ALL of it) of the information available (from both parents of Autistic children and Autistic adults) to have some confidence in the decisions we make. I am in a different place today then I was a year ago, which was different from the year before that. And, like any journey, there are some times when the sailing is relatively smooth, and then there are times when it is pretty tumultuous, and… yes, hard. We are actually going through a hard time right now. It is not always hard, has not always been hard, and will not always *be* hard. And I would never go so far as to say it’s awful. (Although when my 2 ASD kids were both under the age of 3, THAT was a pretty rough time with lots of “ugly cries” and some borderline awful days) But right now, yeah, we are having a bit of a hard time ourselves again. Our dog died last week, and my son was very attached to her. He has been extremely volatile and on edge ever since. It doesn’t’ change the way we feel about him or our family, or how much we love each other, but everyone is more tired at the end of the day, that’s for sure.

    The way I see it, it is absolutely impossible for there to never be misunderstandings in this arena. The thing that keeps me at least a little bit sane is reminding myself that *some* Autistic individuals are in fact extremely concrete thinkers and prone to misinterpreting some statements. (One of my favorite things about Karla Fisher is that she openly admits she has trouble in this area, and is generally pretty willing to pursue a conversation until the misunderstanding is closer to being straightened out. It can be a maddening process to watch unfold sometimes, but at least the effort is there.) And, conversely, there are a lot of not-Autistic people out there that are sensitive and easily offended. And, of course, you have the flocks of parents new to this whole experience, who are at the very start of this journey and might be operating from a perspective of intense worry about their kids, and perhaps even fear of a new experience they know little about – an emotionally charged state, that I think can make you pretty volatile, and potentially very unreasonable, if you are in it. I have been there, I would be willing to bet many of us have been. I think I have managed to unintentionally offend everyone at some point or other. I don’t like when it happens, but it can be an unfortunate side effect of discourse sometimes. All I can do is try to keep my head, see everyone’s point of view, explain myself calmly, try not to get defensive, and take *everything* people say to heart. (and perhaps with a little grain of salt)

    Wow, apologies for my ridiculously long post. This is what happens when I know a subject is touchy and I try to thoroughly explain myself AND my sons are messing with me the whole time and I am continually losing my train of thought. I guess my much shorter version of this wordfest would have been to say something along the lines of “Assholes are everywhere, both on and off the spectrum. NOT EVERYBODY is an asshole in either case, but the ones who are, they ALL seem to find their way onto the Parent Police squad, don’t they?”

    And now I am gonna be wondering all day how many people I offended with THAT.

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    1. Nicely said. When our children are having a tough time, we feel for them…on or off the spectrum. They are our kids and no one can tell you how you should or shouldn’t be feeling. 🙂

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  7. I don’t want to invalidate someone’s feelings it’s just it HURTS to be told you’re a tragedy. It’s a stab in the chest.

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  8. Yes.This. My son is not a tragedy and yes, I hate it when people use those words. But I can say it hurts to see him struggle. It hurts me as his mom. That has to be okay to say that. Thank you Lexi.

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  9. I may be stuck, but I have awful hard terrible feelings every time I think about my daughters future. I do. I am not ashamed and I also feel like you do, there is nothing in life that you can say you “know” about, until you walk that path. I feel sorry for my other children, I feel sorry for my husband and myself, I mostly feel sorry for my daughter. I don’t think I’m wrong in feeling that for her because every time we have doctors appointments or there are children her age in middle school that used to be her friends in kindergarten and first grade, that are now preforming in dances and being teenagers and she has the mental capacity of a three or four year old. It takes my breath away, it is physical pain.

    My daughter is not autistic she is mentally disabled..Although,she has many of the same issues and tendencies as someone with autism. I feel everyday that it is the beginning and it hurts the same everyday. No, I do not dwell on it. I could. I could be stuck in that deep deep deep hole of depression but than who would love her like me.
    I find that I do not have tolerance for a lot of the ignorance in the world. I do think, though, that I have shut myself off from a lot of my life. BUT I can honestly say it never hurts any less not one bit less. Every, time I think of what her life, is not. It is not so much what her life “could” be I think it is more what it “isn’t”.

    Yesterday, I read a newspaper article about therapy dogs and I found myself offended by the language that was used in the article.
    Today, I just got off the phone with another daycare provider that is older and has a daycare child that I know has to be on the spectrum and the way she talked about his “temper tantrums” and what should be done to that child made me sick to my stomach.
    You have mentioned a few times about adults with autism. I am going to say disabilities because that is what I deal with, with my daughter. I am petrified of “adult time”. I do not know that I agree with inclusion. We have been on both sides of that lovely word that normal people believe is such a wonderful thing. My daughter goes to a special education school. I experienced something on March 20th that made something new open up in our world of the “unknown” It has always broke my heart to think of a school day and what all it entails with my daughter and all of the different friends she has and all of their issues. I felt how sad it was that she has to go there everyday BUT it was family lunch day and it happened to be her birthday she was turning twelve. (my daughters are eleven months and twenty days apart) My daughter wanted to wear her tiara, it is a plastic dollar store tiara that she loves and has to where every year. It says Happy Birthday. Well while we ate there were many, many people that came over and asked how old she was. Now, if she had been home and after the second time of someone asking her that, it would have sent her into a rage. BUT unbelievably I sat there and watched her giggle and say “EVERYONE KEEPS ASKING ME THAT”. I’m thinking “well love YOU ARE wearing a sliver tiara with big bright pink HAPPY BIRTHDAY on your head, what do you expect”. She would not have been able to tolerate that at home or in a store. Then we went into the library to have our picture taken and we were supposed to pick funny dress up things to wear. I walked in there thinking OH MAN this is not going to work. Sigh!!!! Then right before my eyes I watched my daughter start to flicker from this person to that and then another person and over to the dress up table and start laughing and touching all of the hats and glasses. There were so many people in that room, that was one of those first thoughts when we entered. We were all there, the room was packed and there are many things that happen at her school with her friends. Just the screaming makes me stand to attention waiting for my daughter to react. AND that’s my point she didn’t she WAS home. She was content it made me start to wonder if keeping her home with me is wrong.

    I’m sorry. I went on and on but I just feel that I don’t know that I will ever be “okay” with our diagnosis or life or whatever it is that is happening here. I think everyday brings a new moment a new detail to figure out. A knew dilemma to overcome. Todays “thing”!!!!! I need to be okay with, is my daughter has gotten her period and she is fighting me to wear a pad. So right now I’m okay but in a few minutes I wont be okay because I will be fighting with her to put one on and hating that I cant do anything to stop her from having to go through that every month. The reason that I can not do anything to help her is because she reacts to every medication and it’s side effects terribly and she has epilepsy so she has to take the medication to keep her as seizure free as possible.

    I don’t know how or who could bash you, Lexi. Really, what do these people say? Do I live in a bubble? Am I wrong for how I feel? I guess I will push post here and then wonder some more because I just do not understand how anyone with a child that has a difficult time being understood, could even a small bit be judgmental AT ALL.

    I’m happy to have come across your blog. You were the first person I had ever heard say things that I was feeling. So, for those haters out there… to each their own but I have to live moment by moment and be okay with what I feel that moment. Just so I can get through and for them the fact is they don’t walk my path.

    Lynn

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  10. You go right ahead and have a bad day. Don’t let others judge your parenting skills, like they’re perfect. I’ve had days like that since my five year old’s diagnosis three years ago. I want you to know that you’re not alone and believe me, I KNOW IT”S NOT EASY. There are days when I regret the decision to have a family and give up my career. But, believe it or not, God has a purpose for you and He has a purpose for your wonderful child. I know it can be challenging to figure out that purpose when we get caught up in the daily mess of our lives, but it’s there to discover. Even autistic people are able to accomplish greatness. My husband is a computer engineer with a six figure income, is debt free and a wonderful father to our autistic child – proof that it can be done. Remember: Different NOT less. Oh, and don’t forget to take care of you, it really does the child no good to not have his best Mommy available.

    May God bless you and keep you and carry you when you need it most. Happy Easter!

    Lesley

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  11. Everyday in IEP meetings I feel for parents getting news for the first time. I never fully understood until sitting with a psychologist at infants and toddlers for my youngest son’s assessment. Answering the sensitive questions, knowing that it would be an hours and I would either have or not have a diagnosis. It gave me a whole new appreciation as a teacher and parent.

    Why is it that people are so quick to judge other people’s feelings? It is ok not to be ok any day you need to be!

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  12. Whenever I meet an adult who is very rigid minded, I try really hard to not jump to conclusions that they are a bad person… Because that rigid-minded adult could very easily be autistic or suffer from a social disorder themselves. I see them as future versions of my own son. I try to remember that children are not the only ones with social disorders. I try to remember that the main problem with autism/Asperger’s/Executive Functioning/etc. is that no one can “tell” from looking at you that you suffer from a Real problem.

    You are absolutely in your right to feel the way you feel, though. You have every right to feel frustrated that people question your parenting and you have every right to write it down. I just try to remember that we all have our own stories. I hope to help my son be able to “pass” in normal society as an adult, but he will most likely make many blunders. I hope he can learn to soften his edges so that he doesn’t offend or hurt others with his bluntness and inability to think outside of his own “box.”

    You have a beautiful family! I hope you have a fabulous spring.

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  13. Thank you for sharing your thoughts and experiences so clearly. My son has Aspergers Syndrome. He is now in his mid-30s. He has a career and is good at what he does. He has amazing talents for music and languages. He also has major challenges that most of us will never face. Sometimes my heart breaks as I see his struggles and know that he will never really be able to do or appreciate things that a neuro-typical man will experience. Our children are special in many ways. But you are right. Autistic spectrum conditions are hard: hard for the individuals who live them and hard for those who love them. Blessings to you on your journey with your child.

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  14. Great post, and beautiful comments from this community in support of your words and your journey. I struggle with the balance between grief and acceptance and just living life every day. Thanks for writing about your feelings, you are an amazing person.

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  15. I completely agree with you. I am a Mom of a beautiful daughter with autism. I’m sorry you’ve taken such hits for voicing your feelings. People just CANNOT understand unless they’ve lived it. It’s tough everyday… but worth it for our children! Don’t worry about those that don’t get it, write for yourself and the other Autism Moms searching for help and validation.

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  16. Thank you! I am a grandparent raising a high functioning 8 year old. I t took me a while to get him tested, my husband had passed away suddenly and I tried to convince myself that there was nothing wrong with this beautiful boy it was just grief. 1 1/2 years after my husbands passing I got him tested. When the psychologist was giving me the results and trying to explain what they meant I started crying. The woman looked at me and said ” I can see this is causing you stress, why? He is high functioning he will be ok.” I thought there was something wrong with me for reacting the way I did. I was grieving for both of us, the struggles I saw in his future and mine.

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  17. i cried when i read your words, as you really expressed what a mother of an autistic toddler feel like , I adore my autistic son but sometimes i need him to talk to me , to look at me , it’s very hard to feel that someone has hurt him in the nursery and he can’t just tell me , anyway i am sure that God know what i am feeling and what my son feels and he will guide us to the right way in this life

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  18. Great post! I relate so well. I mourned twice for my baby. I mourned and grieved when she arrived extremely early (26 weeks). I did it again six months later when I realized that she was not going to “catch up by two” as promised. I love her like a mother loves any baby. I’m incredibly proud of her.

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  19. Your post was really inspirational. I am sorry that you’ve faced such harsh criticism for being a Human being and most importantly a Mother. Only people who have had a diagnosis for their child can understand the ‘mourning process’ which even the Autism Centre advised us that we’d likely experience. It’s not selfish (and even if it is a little bit, so what…we are all human, right?)It is hard to get a diagnosis and be left to deal with it on your own. Despite my 4 yr old Son being given ABA therapy and a place in an Autism programme at school, it still feels like ‘Your child is on the spectrum, go home now and deal with it’. I have no one around me with a Child with Autism to have someone who understands our daily struggles. Even friends who seem understanding don’t have a real concept of what we go through with our Son on a day-to-day basis. Even mine & my Husband’s families live in a different continent! So we don’t even get help. I don’t feel ashamed that I feel heartbroken for my child and the things he has to face in life. I love him with all my heart, maybe even a little bit more because he is autistic.

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  20. Thank you for writing this. I often likened my son’s diagnosis to a bereavement. I had lost a baby girl (through a chromosomal disorder) at nine weeks months before his diagnosis. It felt like the same journey all over again. The hardest thing to deal with in both cases was other people’s unasked for and unwanted comments.

    ‘Come on now, don’t be maudlin’
    ‘Oh for God’s sake be positive’ (day of dx)
    ‘It should be a relief to you’

    It still goes on to this day. These comments are from family members that don’t want me to have the benefit of any sympathy so they play it all down. It’s the most hurtful thing and the biggest barrier on my journey as it makes me quiet about the struggles and fears and heartbreak I face every day, for this beautiful boy that I love like oxygen.
    What is wrong with these people eh?

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  21. I have only tears in my eyes when I read your article and the following posts… You said it just right ! It’s very easy for the whole world to say things like
    -it could have been worse
    – why don’t you try doing this or maybe that
    – it’s only going to get better
    -you have to accept it !!!

    But only the parents know what they go thru in the journey of raising a child on the spectrum. So all you nt moms out there I just have a humble request ….. Stop judging us and stop judging our kids !

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  22. To be a parent is to worry right, I am not a parent but I have parents and I have worked in the educational field so I know some parents. I think every parent in this day and age actually worries that there kid has some debilitating disease. Or maybe even that their kid is gay. And even if they are totally tolerant and accepting of that themselves they know not everyone else will be. Its normal for parents to worry. Its also normal unfortunately for the world of medicine and an educational system dedicated to a brutal indistrial conformity to whip up fear amongst parents as well. As an Autistic person it is painful to read constantly about parents who are “heroes” tragically afflicted with a horrible disfigured burdensome person, like myself. Would that hurt your feelings? How would you like to go to forty hours of therapy a week just so you could be “normal” like mommy and daddy so desperately want you to be and not one of those wierdo retards the other kids beat up. See how that could be painful. Especially if the child we are talking about isn’t actually a “retard” at all but highly intelligent like most Autistic people. As far as Autistic adults ago, the message that it’s a terrible awful disablity is not helping us get jobs or make friends or be accepted into society. Certainly showering understanding and affection on people who commit “mercy killings” of Autistic children or guardians isn’t helping our chances of not getting brutally murdered. Apparently you have to be Gandhi or Mother Teresa to merely tolerate our existence. This isn’t just about you you you and “your” kid, this is a civil rights issue.

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    1. Definitely didn’t mean that to sound like a jab at the parent who wrote this post. It was a pretty reasonable sounding message actually. I was just trying to explain who some people, particularly Autistic adults get angry about the mainstream dialogue on Autism they(we) are usually left out of. I think we should shield parents from some of the extreme hype about how bad Autism is, as well as the quackery in the form of bogus “Cures” that exist. Both for their children’s sake and their own sake. Acceptance isn’t just an ideal it is also the only practical thing to do.

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  23. Thank you so much for this post. We are in the process of having our son diagnosed and all I feel at this moment is an overwhelming sense of loss and isolation. I feel guilty that I can’t be stronger right now, particularly when other people tell me I have to be strong for my son. I hope that one day soon I can get to the point of acceptance as you have.

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  24. I know this if off topic but I’m looking into starting my
    own weblog and was curious what all is required to get set
    up? I’m assuming having a blog like yours would cost a pretty penny?
    I’m not very internet smart so I’m not 100% sure.
    Any recommendations or advice would be greatly appreciated.
    Appreciate it

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  25. I have to say that this touched my heart so deeply and brought tears to my eyes. My son is four and has autism. I’m still trying to cope with this and everyday I blame myself. Thank you for sharing this as it has helped me because I feel the same way.

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