Autism moms warrior blogs

I am not going to sit here judging someone on their journey, and I am not going to tell any moms that they can’t express their woes or life challenges.  Often writing down issues and sharing with others provide a vital outlet for both venting and reassurance.  This is human nature, and writing this blog I am doing exactly this too. 
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But I have something to say and I want you to listen.  I am not criticising your parenting skills, I am not sugarcoating your difficulties, I am not underestimating how difficult life often is for you.  I respect your right to freedom of speech, and I don’t want you assuming that I am dictating to you how you should run your family or look after your kids.  As you often rightly say, I don’t live in your house, I have no idea of your challenges.  I just want you to hear a different perspective, you may chose to ignore it, that is your right, but please, at least, read this full blog. 

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In years to come your child will be an Autistic adult.  There is no cure, therapies, good schooling, interventions, and your child just getting older will often make life easier, but they will always be Autistic.    The sooner you can accept this fact, the more you can learn about Autism and work more efficiently with your child.  It can be scary, unless you are Autistic yourself you have to accept that your child has a different neurologically to yourself.  

What your desires, experiences and enjoyments in life are, won’t always be theirs.  Next step, you need to work on accepting that.  It is not their responsibility to change for you, it is your responsibility to change for them. 

You are the adult, you are the parent and your primary responsibility in life is to make sure they are safe, fed, healthy and happy. 

“Yes yes, I know all this, don’t you think I haven’t experienced this already, I have spoken to the professionals, I have read all the text books, Autism is in my house every day, from the day I wake, from my 4 hours sleep a night” .  Wait, no you don’t know, life is about constantly learning.  Discovering new things.  Being a parent of an Autistic child doesn’t make you an expert in Autism.  “Are you claiming I don’t know my own child?”.  Of course not, there is rarely anything stronger than the bond between a mother and her child, but the reality is you don’t always know what is best.  This isn’t a failure of your  parenting bonding, believe me.  I would say that to every parent, with Autistic kids or not.
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So getting back to my point of this blog, as your child gets older they will know they are different, they will know that they often can’t achieve the goals reached by their neurotypical peers. Don’t think for one minute that their lack of eye contact, focus on other things or apparent lack of language skills means that they are unable to acknowledge this.

You see when you are writing your blogs about how your child has been very difficult, how that meltdown has ruined your day, how your child’s obsessions have ruined an event, how Autism has tried to stop you from having a good day, but fighting against it has resulted in success, how Autism has stopped your kid having friends, how Autism has put a dent in your marriage, or you have stuck together despite all the Autism problems, you are thinking about yourself, not your child. Those vows to always be there for your child, never hurt them, protect them from bullies, and be their main advocate is gradually sliding. No they won’t want to read your blogs about how life was such a struggle for you, they made your life hell, your struggles with toilet training, or how their obsession lasted 2 years which drove you nuts.
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“What the hell are you insinuating, that because I don’t like my child’s Autism, suddenly I am a lousy mom, or don’t love my child as much? That is ridiculous”. Again please address the wording. ” Our marriage is surviving despite living in an Autism household”. Lets use the above quote. Without the “Autism” in the house life would be so much easier. What is Autism? Autism is a condition with my son has”. Ok lets what about this “without the down syndrome in this house, life would be so much easier”. How do you feel about that quote? Repeat it out loud. Now imagine sitting in a park and hearing a mother say that infront of her child with downs syndrome. Would that make you feel uneasy? Of course it would, so why is it acceptable to say that about Autism? You can’t separate a kid from their downs syndrome, you can’t separate a kid from their Autism. Your child is Autistic, and by trying to separate their Autism from their person, you aren’t accepting your child.

Self Esteem
Often parents see this little kid of theirs, a little cutie, running around causing mayhem. Life can sometimes be challenging, yes even non Autistic kids can be hard work. Anyway, you often tend to live in this little bubble that they will always remain young and innocent. This is probably more apparent with many Autistic kids as perhaps they appear to live in their own world’s more, lack of social skills keeps them younger, more innocent. They aren’t going to be streetwise, perhaps due to relying on you more, and all the fighting you have been through together, you just can’t imagine a time when they won’t put their trust 100% in you. Therefore the role you have is even that more important. In order for you child you have more self esteem as a teenager and adult they need to know that being Autistic is OK. Autism isn’t this big lug of baggage that carry on their backs everyday, that they need to fight to get off.
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How about someone said that about your nose? “Oh Mary is a lovely kid despite her big nose”, her “, big nose has been tough, but we got though it”. It was the ” big nose” that split our marriage up. Life would be OK if it wasn’t for that ‘big nose’. If you want to succeed Mary, you will need to kick your big noses ass”. Before you say anything, It IS the same. This needs to stop.

“But I never say this stuff in front of my kid”. Never, really? Never while chatting on the phone to friends while they seem engrossed in their activities? Never trying to read between the lines with teachers or professionals? Will they read your blogs as an adult?

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This was a screenshot of a letter an Autistic adult recently sent to her mum. They do pick these things up.

I am not saying you are a bad person, or love your child any less. But I do appeal for you to try and have a more optimistic perspective on life.

I have seen some pretty depressing blogs in my time ” Autism Daddy ” being the worst. Sticking all his dirty laundry our for all to see about how depressing his son makes him. Maybe you can relate to his blogs? Maybe him expressing his utter depression about how life is so horrific makes you feel glad someone out there shares your woes. Now I would like you to read this blog
http://http://neurowonderful.tumblr.com/post/102907206441/a-long-sad-story-about-the-attitudes-that-autism Is this changing your mind at all? Are you noticing that having such a negative outlook of Autism can be mentally damaging for your child?

“But I need an outlet, I need to vent, once I have written my blog, I feel a relief, the likes and comments from other parents help we to cope, and I know from their perspective I am writing what they are feeling too”. Ok, I realise a simple blog to you won’t change your perception, so can we come to a compromise? When you go on Facebook, twitter, any social networking site to share your blog can you please be cautious of where you share it. If you know Autistic adults are in your group, put Trigger warning, negative Autism chat’ or something similar. If you care about Autistic people, as I hope you do, having one yourself, you need to address their feelings too. Even if your blog appears positive, any mention of having a great day because Autism was quiet, or despite the Autism, is wrong, if you still don’t understand, then please re read this blog.

In case you haven’t heard there is a growing community who are casually named as the ” neurodiversity movement”. Among us are many many Autistic adults, and yes, not just the highly intelligent savant aspergers types. Many (and I use this term in caution as the movement hates classification levels), have been diagnosed with classic or severe Autism. Many parents often say “you can’t possibly understand my child, you can read and write, you are obviously much higher up the scale than my kid will ever achieve” but you are wrong. Many members use communication aids to type, many are completely non verbal. They can relate to your child and they can help you understand any issues your child might have.

“It’s OK reading this, and I get your points, but I still see Autism as a negative thing”. You know, that is OK, we aren’t going anywhere. When you are ready please help change history and join us. If not for yourself, then for your child. You must want your child to be accepted for who he/she is, and that is what this is all about. Also, I am biased here, but any advice you may ask from these groups often would provide you with far more useful advice. Think about it, who is better to ask, someone who is struggling to complete a jigsaw with you, or something who can complete it with their eyes closed? In exchange though, Autistic adults need your respect too. Just think about it, and reply to this blog anytime you feel you are ready.

An Autism household doesn’t have to be filled with depression, helplessness and self pity. You can chose to make it more positive, by opening your eyes being willing to learn, and finding a more positive outlook and having faith that your kid can be just as happy, successful and determined as any of your Autistic adult friends. In, return your child will never have to write that letter above, feel inadequate, and may even thank for learning to understand their neurotype

Thank you so much for reaching the end of this blog, have a good day x

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21 thoughts on “Autism moms warrior blogs

  1. Thank you Hev.

    This is really wonderful and as an Autistic woman I am so delighted to read your words of wisdom and compassion!
    Society talks about the ‘missing’ puzzle piece in relation to Autism. Well that missing piece is ACCEPTANCE!
    Yes let’s make history by embracing Autistic people and together we can celebrate the differences we share!
    Thank you so much for writing this wonderful piece xxxx

    Fiona O’Leary

    ART Autistic Rights Together

    Liked by 2 people

  2. Fantastic blog post! Do you know, I think this issue runs deeper than the Autism community. There is a tendency for people to run their children down on social media, some may believe they are creating fun stories for friends or even do it to gain fellow Mum sympathy. I have never publicly humiliated my child, but then from the beginning my entire parenting approach has been child centred. That does not mean that I won’t feel frustrated, upset, tired or exasperated at times as a parent, it means that I choose to share those feelings with someone who loves our children just as much as I do…my husband. Together we are each other’s sounding board, if I didn’t have my husband to sound off to, I would write in a private diary or on sheets of paper which I would immediately shred. Because the thought of my children bearing witness to my lost patience or exasperation would make me a complete failure. I have an Autistic son and he has a horrendously low self esteem at the moment. Mostly due to being singled out as being weird at school, with almost the whole school whispering that he is a weirdo when he was close to them. He told me this three days after he left school for the last time (we are embarking on an exciting homeschooling journey). I asked why he hadn’t told us and his answer was that he didn’t want to upset us. I took my little boy in my arms and kissed him and told him he was wonderful, that the differences his peers noted were what made him unique and brilliant. I also told him that he would never have to go through that in school again. I wish I could say never again but the fact is that at some point in the future a thoughtless and cruel individual will notice his differences and point them out to him. What I can say is that thoughtless individual will NEVER be me. Ever since my children were born, I had a rule that if a photo was embarrassing enough that I would not want my friends to see it, I would give the same courtesy to my children. Thus why I have no naked pictures of my babies, no embarrassing pictures that others can use to tease them and no embarrassing or hurtful stories that could destroy my children’s self esteem. If peers saying hurtful things can destroy a child’s self esteem, it horrifies me the thought of the damage to a child will Autism upon having to hear/ read their parents speaking that way about them.

    Liked by 1 person

  3. As an Âûtistic Adult, words can explain how refreshing and beautiful your words were. I know some parents will disregard this and continue to be blind-fully ignorant of the realities around them and neither you nor me will convince them, but they are many parents who want to hear that message of hope and love that the media is blocking out in the name of publicity and shaming. Just like Martin Luther King, I have a dream. A dream were it is okay to live in a world where being Âûtistic is not only accepted but embraced and celebrated by society and by all of our loved ones. That dream where both NT and ND people can co-exist in harmony will be become a reality. One day. Until then, please keep fighting for us Âûtistic and continue to be on our side against the “cure culture”.

    Liked by 2 people

  4. Excellent!! The only thing I want to add is I consider myself a warrior mom. Why? Not because I’m living in a war zone ( although with teenaged males in the house that can be debated) but because my boys were small, there were no services and I had to learn to fight for them. For awareness, for acceptance, for appropriate services. Now I find myself still fighting. Fighting curist, bleachers, those who chose to see a label not a person, those who think THEY know what is best for autistic people, but ignore autistic people. Unfortunately it is a war zone, and I am a warrior mom, but not because of my kids, because society chose to not accept my kids. Hurt them. So this Mama will not stop being a warrior until my sons voices, and the voices of autistics around the world, are not just heard, but LISTENED too! Ps “helpfulhev” ( seems weird calling you that, you’re usually a PIA Lmaorotf!) feel free to use my days post re when to, and when NOT to advocate, a role all parents, but especially those in Au-some households often have a hard time transitioning into. Feel free to use the “autism households, uniquely beautiful meme too!! Xoxoxo, amazing post, scheduling it for both days and I don’t need a cure tomorrow!

    Liked by 1 person

  5. A great insight! My son is just that ‘my son’ a person with autism that makes home awesome and a great teacher. I cannot extract ‘autism’ out of him any more than I can fly to the moon! And why would I? Yes I fight for him, for awareness and acceptance, but embrace all that he is, just like I should, because I’m his mum!

    Liked by 1 person

  6. I’m so glad to have found blog posts such as this. My 7 year old son was diagnosed 3 months ago. What I was hearing from a lot of other parents was unacceptable to me but I couldn’t put words to why I felt that way until I started reading blogs written by autistic people and those who love them the way I want to love my son. Thank you!

    Liked by 1 person

  7. There can be some decent advice on Autism Daddy, but the way he always refers to his son as The King or His Majesty grates big time. And a close second is calling his wife “Wifey.” Thanks for this great post. My autistic son has his challenges (which can correspond to parental frustration), but I really, really try to keep in mind that he listens to and is affected by the words he hears from everyone.

    Liked by 1 person

  8. In terms of Autism, I aim to only vent publicly about how my child is falling through the cracks of our school and healthcare system. I also vent about typical teen struggles and mishaps, and this is done light heartedly, with humour.

    However I also belong to a small closed and private group of moms online who share experiences in order to vent/inform/brainstorm in a supportive non judgemental environment. Without this outlet I would feel like an absolute failure as a mom. Because in the real world, I am judged by some parents for not being vigilant enough with my kid’s behaviour. But there’s a whole other group of people who know that my kid has autism and expect me to be even more accepting of all his behaviours, and therefore look at me as a bad mom when I do put my foot down and resist some of his impulses. My fellow “autism moms” respect the delicate balance, and we help each other through the challenges. I simply can’t afford the amount of therapeutic appointments that my online support system stands in place of. And the immediate response, from people I trust and feel connected to. And the time I save learning from people who just finished reading the most appropriate super helpful article, or just yesterday dealt with the same issue as me.

    It would be perfect if my child could be the one who leads me to all the answers. But unfortunately his head is usually too full of anxiety and other stimuli. And occasionally he goes through a stage of denying he has autism. And then there’s the teenage angst and independence and oppositional stage just making it all beyond my level of understanding. I do my best. But I need support wherever I can get it, so that I CAN do my best. Given that I live in a rural location, the Internet has provided me well. I strive not to humiliate my child in the process of sharing and learning. And I will keep your blog in the forefront of my mind.

    Liked by 1 person

  9. I am largely down with the neurodiversity, “autism positive” paradigm and have written on my own blog about my “conversion” process to this way of thinking. However I think the post misses two important points.

    Firstly. When parents complain about the adversity they go through they are not necessarily complaining about the autism. What they are actually bemoaning is the way society treats them and their kids. Autism is not a problem per se but when autism meets a bigoted world, a world set up almost exclusively for the neurotypical then that interaction of a square peg and round world becomes a big problem for all involved. This is what autistic people quite rightly complain about and this is, in fact, what most autism parents are complaining about. They might use clumsy language like “oh autism ruined our family day out” but what they really mean is “oh the way the world if just not set up to cater for my child ruined our day out” A simple case in point from my own life was last weekend we went to my fathers for lunch. It was a sunny day, with nice food and wine and we were all eating out side. My sis and her kids were there and it should have been a lovely relaxing family occasion but it wasn’t because my son got scared of the dogs, didn’t want to eat with everyone else and instead wanted to line up stones on the bumper of my fathers car. So that’s what we did. I was bored shitless whilst everyone else had a good time.

    Now that might sound like a moan about my sons autism but really it isn’t. This is not his fault and it would have been perfectly fine if the social conventions around family lunches were different. If someone had come over and talked with me, or got me a beer whilst I tended my son then it would have been better. If the garden were more secure so I could leave him unattended. If we had places where dogs could be kept away from those that are scared of them instead of insisting that they try and “get used to them” like you would expect an NT kid to. If these conventions were different then my sons “disability” would not be a disability . His life and mine would be easier if those changes were made. But we do not live in a world like that, we live in a world that is hostile to autistic people in many many respects and that makes life harder for all involved. So it is this injustice that parents really complain about despite using the “autism is bad” language.

    Secondly. Not all autism is equal. My son is classically autistic and is no mild case. At his diagnosis autism was described as a fried egg. With aspergers and other “milder” forms as the white with classic autism as the yolk, my son was described as being firmly in the yolk. He is bright, able, happy and pretty autistic. We don’t think he has any cognitive impairment or learning difficulties (well he as “access to learning” difficulties as “normal” teaching methods don’t work but again this is one of the societal problems mentioned above). He will, I am confident, lead an indapendent and fulfilling life. This is not the case for many autistic kids and adults. I know autistic kids who are still nappies in their teens. They are non verbal with severe cognitive impairments and, even with all the will in the world and societal changes possible, will never leave an indapendent life. Telling the parents of such kids that they need to be positive about their child’s obvious and severe disability is a bit rich. For my sons autism I can be positive about it and accept it as simply part of his unique charm, I would not change it or cure it even if I could. But one of my friends is a single mum with severely autistic girl who is just starting puberty. To tell her to not moan about the fact that she had to change the nappy of a prepubescent girl on a train in full view of joe public is a more than a bit rich, its downright callous. Is she really bad for wanting her child to be different? Is she bad to be upset that she has never heard her own child speak? Is it bad that she is upset that she will never have anything more than basic communication with her child? is that really a bad thing? Is it bigoted of her to want a cure? I do not think so.

    The problem really is that autism is not one condition. There are in all likelyhood multiple underlying atypical neurologies that cause autistic behavior. Most are simply part of human neurodviersity and so should be celebrated and certainly not treated as an illness. For this majority of autsitic people the appropriate responses from society should be acceptance and reasonable adaptations to their needs. Its kind of like being gay. Different yes, less than no. But for some autistic people their brain differences could rightly be considered pathologies and some could even be considered disease or brain damage. It is not one thing and so one over arching paradigm of how we should all view autism is inappropriate in my opinion.

    The neurodiversity movement is great and has a useful role to play but it gets a bit ideological and preachy from time to time. The irony is that the neurodiversity movement does not actually embrace all the diversity within autism. Many many autistic people want to be cured. Many see their own autism as a blight on their lives. Sadly I have seen those within the neurodiverity movement dismiss the opinions of these autistic people as being “internalised ableism” or some other such term. It seems that the mantra “the real experts on autism are autistic people” only really applies if the autistic person has the “correct” opinion.

    With all that said though I do think many parents could benefit from a more positive outlook on autism. We do tend to get dragged down in to the “autism is bad” paradigm by constant negative media messages about autistic people. Many parents of perfectly healthy autistic children are wrongly in the “must cure it” camp and these parents do indeed need to listen to what you have written. So most parents of most autistic kids could indeed learn much from the neurodiversity message but I would urge extreme caution when making any blanket prescriptions on a condition as diverse as autism. Not all autism is “just a difference to be celebrated” because not all autism has the same cause or underlying neurology.

    My own autism positive post is linked below
    https://autisticbean.wordpress.com/2015/04/29/getting-on-the-right-path/

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