By Lei Wiley-Mydske
Originally posted HERE
The reason I speak out against Autism Speaks is because I love my Autistic son. I love him so much that he has forced me to love myself too. If you are not Autistic or otherwise Disabled, you might not know what it is like to grow up with these messages of hate and fear and people treating you like you’re nothing but a horrible burden on society.
You hear about what you cost, you hear about how if you could just act a little less Autistic, people would like you so much more. Even those of us who grew up without a name for what made us different….we felt it too.
So you start to lie. You pretend that if you just keep trying, you can be as normal as everyone else. And you work so damn hard at it. They put you…
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Kerri Rivera and Jim Humble will swear up and down that MMS or Miracle Mineral Solution isn’t bleach. They will tell you it will cure your child’s autism, or cure AIDS or tuberculosis.
Do not listen to them. These people are vile and evil. Why they are allowed to walk around in this world and do such horrible things is a mystery to me. Why aren’t they in jail?
This stuff is actually chlorine dioxide. It will burn your insides and make you ill. To use it on a non-verbal autistic child, to force them to ingest it and use it as an enema should be illegal. It’s torture. It makes these kids defaecate their own intestinal lining.
It’s not going to do anything to cure your autistic child. Autism doesn’t have a cure. What’s needed is realizing that no, your child hasn’t been stolen and replaced by a changeling…
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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.
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.
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.
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.
“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.
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.
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?
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