Hate me, for I am but a lowly autism parent!

Oh, the ‘anti-parent’ movement grows. It grows!!! There is a small band of self righteous, holier than thou haters out there that insist on finding faults in us all. If they can’t find faults, they’ll just compare you to someone that they did find faults in because we’re both parents so, hey, if the shoe fits…

Fine, fine I say! Bring it on. Hate me if you must. Not only do I not care (after all, what you think of me is none of my business) but I sat here pondering… if they must go to such lengths, the least I could do is make it easier for them.

So here is my list of reasons that you should hate me, for I am but a lowly autism parent.

  • I try to change my child ever single day. Both of them!! That’s right. Autism, no autism… I don’t care. I change them. And I like it.  One of them is mean to their brother? Damn right I stop it. Both of them fighting over nothing? Time outs all around!! Not saying please and thank you today? Best believe they’ll be changed children come tomorrow. Don’t know how to spell antidisestablishmentarianism? Time to pick up a book kids, you’ll study till you’re changed and you’ll like it! Judging some other kid because they’re different from you? That changes… NOW. Yeah, I want to change my kids. Not because I don’t love them the way they are but because I do.
  • Drugs and therapy for all!! What? You’re not suppose to use meds on your kids? I guess that fever should just run out of control until it’s hospital time then huh? Oh, that infection? Who needs anti-biotics??? Super hyper? Unable to sleep? Super depressed?? As strange as I am but any time I have to choose between a doctor recommended prescription or a child that is unable to do anything due to what that prescription could help… I choose the prescription. Oh, therapy too. One child didn’t talk until he was older than 3, so I paid $150/h that I didn’t have to get him speech therapy, cause I’m an evil parent like that. Now his vocabulary is right on track and he reads books that are 2 grades higher than his age level… you should hate that. He’s doing so much better than he would have if I just accepted him for who he was and let him be. Hate me!!
  • ABA is so cool!! My son went and played with other kids and was encouraged to be kind, courteous and even engage other children in conversation. He even started conversations!! From there we went out for lunch and he met more children. You should hate me for that because hey… ABA right?
  • The things I say… oh man, they’re great things and come from the heart but the way that some people can magically turn them into the most vile, attrocious non-sense with a single wave of their “what I hear when you say” wand… and man, I even hate myself! I can’t believe “I love you” could mean so many terrible things. But you manage to twist it up enough and I disgust even myself.
  • I struggle. You should definitely just toss me in the pit for that one. I mean, no sleep, huge debt, emotional strain, lost marriage, hours and hours of meetings, appointments… you know, years and years and years of giving 110% for my children, with and without autism… you should definitely just kick me in the head now for how much you hate me because this is about my child, right? It’s all about what he feels so I am not allowed to feel anything. None of any of what I go through is even really happening. It’s just pixie dust in the wind that I make up and pretend makes me tired so that I can say that it can be hard on me sometimes too. I hate me for even being tired. I mean, come on… 4 hours sleep, 3 meltdowns, hours at the IEP meetings, therapy and grocery shopping for gluten free food I can’t afford… that’s just today! I shouldn’t be tired at all. Stop pretending it’s real dammit. See, even I hate me.
  • My child is happy. Yup, I said it. He has friends and is doing well… not abused in the slightest, not alienated or singled out… not at all the autism life that you anti-parent hater types seem to profess that a life of autism is supposed to be. I don’t fit into the mold. I don’t have a say. I’m a pox on the community. I made sacrifices and worked my tail off and did absolutely everything I could and more and now my child is happy… I’m a terrible parent. You should hate me. I’m sure it goes against everything you believe a parent should be or that an autistic child should be with their parent… happy. Sheesh!
  • I don’t hate everyone else. That’s a big one. You should hate me for that. Those other parents that want a cure for their kids? I don’t hate them. Those other autistics that want themselves to be cured? I don’t hate them either!! Those people that struggle for acceptance, for understanding, for awareness, for finances, for an IEP that works, for a few more hours sleep, for more education, for more understanding law makers and enforcers… for… well, for it all really… I don’t hate a single one of them. For that you should definitely hate me. It’s almost like I’m on their side. On everyone’s side! It’s almost like… I care.
  • I’m not every other parent. Another big reason to hate me. Yeah, I know that some parents do over medicate and some take drastic actions when things get too hard and some people really are just lousy stinking parents. You should hate me for not being them. I mean, I’m a parent, just like they are, but aside from that, we have practically nothing in common at all. And you hate them right? You should totally hate me too because if you hate them, and I’m nothing like them at all, that’s more than enough reason to hate me too.

Oh anti-parent squad, if you didn’t hurt so many people, you’d make me laugh. But you do hurt folks. Good folks who are good parents. And you hate them before you know them.

And there’s nothing funny about it.

I don’t hate you, but I do wish you would just stop.

In the mean time, you should hate me. Because I’m a parent and I have a child with autism. And the one thing that having a child with autism and you haters hating me will have always in common is… I’ll enjoy every second of it.

Tyler and Cameron

Tyler and Cameron

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To the non-special needs parents that feel they need to give me advice

If you have a child, or children, and none of them have special needs, but you still feel you have all the answers and just have to give me advice on how to raise my children that do have special needs, I want you to consider this:

You know how annoying and frustrating it is when non-parents think they know everything and tell you how to raise your children when the reality is, they really don’t have a clue?

Yeah, that’s how you are to me right now.

cara-advice

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I don’t believe you, I believe in you

I read about fear, bullies, inflated egos, feeling of not belonging, regret, disappointment… being different. I read about suicide, running away, giving up… loss. It hurts me so much to read these things. Children feeling things they should never feel, writers feeling like their words are hated or ignored, parents feeling like they aren’t good enough for their children. It hurts to read. I can’t imagine the pain involved in writing them.

Being so entrenched in the autism community, you would think the one common factor each person with each feeling would share is that they have autism but it’s not the only common element. The other, possibly a bi-product of autism, possibly just something more people deal with than we realize, is insecurity.

They tell me they are useless, that no one listens, that they are bullied and that they are worthless. They tell me the most terrible things and they say these things about themselves.

I used to say these things about myself.

But over time, as I found my purpose, as I put my heart and soul into helping others, I began to realize something, I don’t believe myself anymore.

Don’t wait until you find your purpose. You don’t need to find a reason. You need to stop believing yourself and start believing in yourself. You are all the reason you need.

You need to have pride in yourself, respect yourself, understand how important you are and you need to believe it. Believe in yourself.

Do I know you? No, probably not. But that doesn’t mean that I don’t believe in you. I haven’t met anyone yet that I couldn’t believe in. Because every person is important.

Autism or not, you are important. Insecurity or not, I believe in you.

Myself, my son, you, everyone… shed your insecurities and let your potential free.

I might not believe you if you say such hurtful things about yourself but I believe in you.

I’m not the only one.

963965_571002722978603_265078688_o

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Autism Speaks is not and has never been listening despite their slogan

Autism Speaks, the largest and most powerful autism organization there is with enough real power to make a real positive difference.

Ah to dream.

I mean, don’t get me wrong. They have brought about some big changes and it can be argued that they have raised more awareness than pretty much anyone else in history. But at what cost? And using what methods?

Fear. A lot of fear.

They have a long history of fear mongering with videos that depict autism as a deep voiced child predator or as an epidemic that makes moms want to throw their children off a bridge.  They spend donation money on all those research studies that you hear about in the news that links “an increased chance of autism” to such things as tylenol, c-sections, premature birth, living close to a freeway, being old and on and on and on.

There’s really no point in rehashing history. I’m sure you’ve heard it all before. I’m also sure that you’ve heard about what’s happening this week. Autism Speaks is heading up a “summit” in Washington DC where they’ll call on the government to come up with a “national plan” against autism. Yes, “against” autism.

To this end, Suzanne Wright, a co-founder wrote this piece on the Autism Speaks website: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

This post, this whole “action plan” is deeply disappointing. It is disturbing, disgusting, shocking and all together frightening.

Putting in bold, in 3 separate places “this is autism” is not just wrong, it’s designed to make people fear autism, hate autism and want to do what ever they can to wipe it out. I’m sure they do not deny this. It’s very clearly the purpose.

It’s a fear mongering tactic.

Now, granted, there are some that have autism that truly are in a great deal of pain, completely incapable of any perceivable form of communication and really could do with some level of “curing”, not such that they’re not longer be autistic necessarily maybe but just so that they are no longer in pain and able to function independently.

That’s fine.

But to say “this is autism” and spout scary numbers and say that “these families are not living” is basically equivalent to turning millions of people into monsters that are to be feared. If they used a child as an example of.. well, an example… that would be different. If they quoted numbers of those that are specifically that bad off, that would be different. But they don’t. They claim “this is autism” over and over again. They attempt to speak for us all. They attempt to lump in those of us that do not need to be spoken for in their big monster horror film.

Sure, Autism Speaks can go to Washington and push for help for those that need insurance and aren’t getting it, they can push for more therapies, research and medication for those that need it.

But there should ALSO be those going along with them to make sure that all the other autistics are represented and accounted for as well. That all the families that have children that need those things but don’t see their child has a monster are represented as well. That all those that are unable to speak but are still able to express an opinion are represented as well. That everyone… absolutely everyone… is heard.

All of us… that is autism. 

There is something amazing to come of this though. The comments. The autistics, the parents, the community… all of those people outraged in the comments,  they give me hope.

This is the message to Autism Speams and to the government and to the world:
We are the voice that should be heard. We are the ones that you dismiss. We are the ones that you attempt to speak for and silence and remove. But we are the ones that matter. We are the ones that need to be a part of what directly affects us.

I have autism, my child has autism and thousands of others just like us are telling you, right here, right now, this is how it really is.

All of us… that is autism.

With that, there’s only one thing left to say:

Hey Autism Speaks… it’s time to listen.

Loving life, not silent, not to be feared, not to be spoken for.

Loving life, not silent, not to be feared, not to be spoken for.

PS

I’m including some other great posts/discussions on this because I believe, as we all do, that we should have the right and opportunity to speak for ourselves.

http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/

http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/11/autism-speaks-kidnaps-policy-summit.html

http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html

http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/

http://theautismwars.blogspot.ca/2013/11/a-mouse-that-roars-standing-in-defiance.html

http://autismandoughtisms.wordpress.com/2013/11/13/crisis-despair-and-everything-else-wrong-with-autism-speaks-call-for-action/

http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html

http://theconnorchronicles.wordpress.com/2013/11/12/autism-speaks-does-not-speak-for-us-this-is-autism/

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How to Improve Sleep in Children with Autism

Children are specials. Most especially when they lovable as they are. Children must be treated with equal love, care, support and discipline. The hard thing is, when your child is affected with a disease conditions. One of the conditions that affect children is autism. Autism is a neurodevelopmental disorder that severely affects children. This is characterized by triad behavioural symptoms. First is impaired social interaction, second is restricted repertoire of activities and interest and lastly is impaired communication. It also includes signs and symptoms like tactile hypersensitivity, tantrums, destructive behaviours, sleep problems and cognitive impairment.

Improve sleep in autistic children

Sleep problems are not usually common in normal children. But with an autistic child, this is common. The common sleep problems they encounter are poor sleep quality, unstable sleep routines, restlessness, snoring, waking during midnight and difficulty sleeping.

Establishing Strategies in Sleeping for children

Establishing good strategies in sleeping for children helps you determined patterns to make your children have a good sleep. These strategies can be the best for you. Try it and you will see.

  • Discuss with your children’s paediatrician some ways and prescribe medicines that can help them have a good night sleep. State all your concerns and collaborate with the paediatrician for establishing the strategies.
  • Avoid your children in any activities before going to bed. In this way, your children can relax and stay calm before sleeping.
  • Have a routine for your child before sleeping at night like taking a bath, having a massage and listening to calm and soothing music.
  • Remove any distractions form your child’s bedroom to avoid any stimulants. Noise and sensory distractions must be controlled. Inform other members of the family about this so that they can also adjust.
  • Take note of the sleep patterns that your child obtain and record it. Show it to your child’s paediatrician for evaluation.
  • If your child did not response to the strategies, obtain immediately a sleep medication like melatonin from your child’s physician as your last option.
  • Encourage optimal activities during the day. In this way your child may feel tired during night time and makes them wanting to sleep more.
  • If making any changes of your child’s routine, kindly introduce it to them slowly so that they will not be overwhelm and stressed out.
  • Introduce simple steps for your child before bedtime so that they would learn. Do not set more than six simple steps for your child.
  • For parents, be consistent about your sleeping time and waking up time.
  • Make sure that your child doesn’t have any snoring problem. Don’t avoid if your child has a snoring problem. But, the question is how to cure snoring? There are so many solutions but some remedies and anti snoring devices will help you stop snoring.
  • Used sleep devices if you need more to help you with your child’s condition.
  • Engage your child in a sense of relaxation so that they would feel stress free and happy thoughts would enter their minds.

I hope these strategies could help you. As parents, you need to have more patience and understanding about your child’s condition. Increasing their integrity of life can make them survive longer. Their survival rates depend on how they were taken care of and expose to activities. Sleep deprivation for autistic children is still unknown but studies now are still continued to be done to discover more treatment modalities for this disorder.

References

http://www.insomnialand.com/blog/how-to-improve-sleep-in-children-with-autism/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1201388/

http://www.ehow.com/how_7602196_improve-sleep-autistic-children.html

http://www.autism-community.com/understanding-and-improving-sleep-in-individuals-with-autism/

Comments { 4 }