Saint Makers

There seem to be individuals who think that their autism is the only kind of autism. That their perspective is the only one that should be heard. I disagree.

While I completely agree that some things need to remain private. It seems that these individuals don't want you to say anything about autism that isn't rainbows, unicorns, and butterflies. Oh wait...unless your talking about those evil ASD parents who share about the struggles in their home.

There seems to be individuals that harbor a lot of resentment towards their parents for the therapies they received. Perhaps these individuals would be as accomplished and vocal if their parents hadn't put them in therapy. Perhaps their parents were being selfish martyrs when they attempted to help their children function in the world.

That's right. If I help them enough to make them resent me and bad mouth me publicly...well I guess that's parenthood;D I can accept that. But, my kids seem to really like me....because I'm awesome and shit;D 

They say we are selfish martyrs. But, make it clear that they demand us to have behavior of saints. We aren't entitled to express ourselves unless its about how wonderful everything is. Personally I think that is rather unhealthy. Some of us are living in chaos that consumes our days.  We need to know that we aren't alone. The feeling of isolation isn't going to make things better. 

The haters could spend their time making sure children like mine will have access to govt aid, services, and activities, they could be mentors to ASD children. But, for some reason they choose to spend their time critiquing ASD parent like some self righteous Sanctimommy. 

And its just getting worse. Now we can't even be congratulated when our child succeeds because its not about us. But, I don't get that because NT parents are allowed to be proud of themselves when they take a struggling child and help them complete high school. Yet an ASD parent can't be proud that they got their child into a therapy that is working for them. Could you imagine telling that NT parent, "You can't take any credit or pride in the fact that you helped your child stay on course and graduate. All you did was register them for classes. They did all the work." No you would NEVER say that to those parents. Why? Because its a dick move. Yet that's what some people in the autism community have done to ASD parents. And guess what...its a dick move too. 

Happily enduring the constant ridicule

 I can't do anything to stop the constant stream of parent blaming and bashing. So I choose to make fun of it. Which is always the best way to happily endure constant ridicule.

There are many things that I agree with autistic adults about. For instance parents speaking about their child, in front of their child, as if they aren't there. I have fallen into this a few times. For example when we go to the psychologists. I try really hard to make sure I'm not doing this. I can tell my child is uncomfortable and upset ....and it breaks my heart that he can't add more to the conversation. But, his communication is so limited:( No one wants to feel like their voice isn't being heard. Autistic adults remind me that he needs to be in the dialogue. And when an autistic individual is not, I'm sure that this causes many to harbor resentment towards their loved ones. It's good to be reminded that these simple things can dramatically improve our relationships with our autistic loved ones. I don't want my children to grow up hating me.

There are many autistic adults who advocate very well for others. I am certain they are good people with good intentions. They are trying to help. Which brings me to my next point of agreement. Silencing autistic voices is not ok. They have every right to voice their opinions. They have insights which we do not. So they need to be heard.

But, I also reserve the right to disagree with them.

My biggest issue with certain advocates is that they lump all ABA together. While I do agree that ASD children shouldn't be taught complete obedience. I understand why some parents send their children to this sort of therapy. Its not so their child will become a mindless obedient person.  Learning social skills and self help skills, etc.  may mean their child could live independently someday. These are lofty goals that not all of my children will achieve. But, I support these parents trying to give their children that. I understand that they are doing it because they love their child. And want them to have the best life possible.

I wish my child could be in this type of therapy. However access and finances make it impossible. Our ABA is an hour every few weeks. They basically help me come up with interventions to help my child. We have an educational goal of using a normal speaking voice instead of whispering when he reads. I work on this with him. But, I am honestly not too worried about it. The goals I really care about are minimizing outbursts, self harm, grabbing himself inappropriately, and his fear of dogs. Many of these issues could lead to him being institutionalized some day. My goal is to make sure that doesn't happen. But, I worry. My child's fear of dogs has, at times, made him unwilling to leave our house. We work on this issue at home, away from the presence of dogs. But, even the prep work doesn't help that much. When we do manage to get him to go to a place like the park. Someone might have a dog. Or worse. They don't follow leash rules and the dog charges my son. Further reinforcing his fear. Yes, we try our interventions that our therapists have suggested. But, most of the time he goes into a meltdown. And we all know that nothing can be accomplished during that. It's a long process that I wish we didn't have to deal with. So if ABA is unacceptable. What are we suppose to do? Nothing? I'm sure some people would say. "Let him stay inside. He doesn't need to be out in the world if it make him uncomfortable." But, I am not ok with that. That just makes him one step closer to being in an institution. How could anyone want that for my child? 


In the end I am grateful that there are autistic adults who advocate for others that cannot do it for themselves. I know they mean well. And I hope that they know that I mean well too. 

The wrong bandwagon

Get baby Jesus in his car seat. Lets take this bandwagon for a little ride down Ignorance Lane.

Last week a very disturbing video was released by Kathleen Smith of Tombal, Texas on her personal account. She had her facebook settings so that the public could see it. Her friends said she was going to go viral. And they were right. This video is starting to hit media outlets. If you'd like to view the video. Here it is....

She was upset about a loud child in the store. We get it. Most of us have had to hear a loud child in the store or restaurant. My husband and I rarely get to go on dates b/c there are not very many people capable of watching children on the spectrum. So our dates are rare and only three hours tops. So when we go to a restaurant and have to listen to loud children that parents won't discipline ...yes, its annoying. I totally get it. But, we don't go and make video rants about it.  

She never identified the child as special needs. But, many of us in the autism community could see our children being that child. One of the things people don't understand about autism is that some of our children and even adults can experience sensory overload quickly when they go into places like a grocery store. This sometimes leads to a meltdown. A meltdown is very different from a temper tantrum that (NT) typical children have. In a tantrum a child wants something (candy, your attention) but, in a meltdown the child is in crisis. They aren't looking around to see reactions etc. I think that on some level people know something serious is happening. Which is why we have to deal with a lot of stares and nasty comments when this occurs. Since she was so traumatized from the whole thing perhaps that is what she witnessed. 

She prayed to baby Jesus "...let there be something wrong with that child." 

Who wants something to be wrong with a child? 

She wonders why the mother hasn't "beatin the fuck out of that kid yet?" 

OK- I have spanked my kids in the past. But, with my middle child that is NOT an option b/c it leads to self harm behaviors. And its absolutely heartbreaking to see. So no...I'm not going to say beating the fuck out of a kid is ok. And if you are against abuse you'll just  love her parenting ideas she expressed in her first "apology video"

She talks about possible emotional problems, birth defect etc. Then goes on about how traumatic this was for her. And how she and a cashier gossiped about the child. 

Then she offers  two...I mean three suggestions, "Kill it, give it away, or leave it at home. If it's got a problem leave it at home." Kill it...really? You don't even joke about killing a child..EVER. Give it away? Really? To whom...someone like you?  Leave it at home? No. For a few reasons. Our children will not learn to function in society if they are left at home all the time. This is true with typical children as much as it is for special needs children. With the exception of Kathleen, adults have coping skills. Not all families are two parent families or have a support team that makes it possible for them to leave a loud child at home.  So guess what, you are going to see loud children at grocery stores. But you do have options: you can ignore it, or offer help. Simple stuff...basically deal with it like an adult. The child Kathleen complained about is young. She still has a chance to grow out of her outbursts. Sadly Kathleen is a middle aged woman who probably will never grow out of hers. 

Her first apology video

 

It's not really an apology. She basically admits that children and parents piss her off. That her parenting philosophy is that children should be afraid of their parents. And that her children were afraid she would snap and be on the news someday. I can see their concern. She is also considering starting a parenting blog. I'm sure lots of people will flock to it so their children don't grow up to plant trees, save the Earth or recycle. We all know that's a waste of time when you could be making a fool of yourself on youtube. 

The second backhanded apology. 

My first thought was that this is the best apology a person like her is capable of. But there were so many backhanded insults its hard to ignore. She also back peddled on many things. And said that if you contacted her with negative feedback that you were on the wrong bandwagon.

Dear Kathleen,

You said that it wasn't about autistic children. Even though you mentioned special needs in your first video. Even if it wasn't about a special needs child. You were speaking about a CHILD.  I guess in your mind its ok to say you should kill a NT/typical child. What you said is not ok.

You said if special needs parents took as much time with our children as we did going after you we would get something accomplished. FYI: Only a handful of other page owners spent much more than 10 minutes on you. Most people saw the videos we posted. Then went over to give you an earful. You spent a lot of time on it b/c you actually read what LOTS of people said about you. Don't think for a second that you actually understand our struggle. Or that you understand how much time and resources we pour into our children. You don't understand...and you never will. I don't think you are capable of seeing much beyond yourself.

I don't care that you use profanity. I use a lot of it myself. That is between you and the baby Jesus. 

You did receive lots of complaints about your driving and video taping. That was one of my concerns as well. We both know this isn't the first time you have done this. You really need to figure out those privacy settings if you want people to believe your lies.  I'm not sure you should even be driving when you are so emotional. Let alone video taping. Accidents happen even when people are paying attention to the road. I hope that you are more responsible in the future.

As far as the negative comments you received at the bookstore. I feel bad if your mother saw any of that. It's hard when people criticize your children or parenting. And by all accounts your mother is a very kind person. It's so sad that she has to see you like this Kathleen. I'm sure this isn't what she wanted her daughter to become. But, I'm not going to criticize her parenting. I'm sure she did the best she could. Just like that mother in HEB.

Kristi

It's not always about their quality of life. It's about my quality of life.

A long time ago (not really b/c I had a blog) I had this family blog;D I started it because a few of the moms in our playgroup had their own blogs. I loved reading their blogs and thought I should create one too. After all, its a great way to save pictures and record memories. 

One day one of my friends told me she didn't like going to my blog. I was a bit confused and asked her why. She told me that my blog made her feel like a bad parent because I was doing more with my kids than she was doing with hers.  I told her that I was sorry if I made her feel that way. And that she did just as much.  She said, "No, I don't." I sat there and contemplated that for a moment. Perhaps we did. Then I told her maybe my husband and I do take our kids to a few more things than some families. But, that we do it b/c our kids need it more than most kids. At this time I had a baby and basically two children who were nonverbal. The future seemed sort of bleak for us. We always figured if we didn't take them out and do these things. They might never get to do it. If we don't take that vacation.....they probably would never get to go there. That inspired us to try a little bit harder.  We wanted our children's lives to be full of adventures. 

So we make it a point to go to more baseball games than I want to see.

We have a zoo membership....and we use it A LOT. 

We go to the circus, holiday displays and other impromptu activities that we are sure will end badly. But sometimes we are surprised how wonderful it turns out. The truth is, it can be scary. You never know when one will try to wander off or have a meltdown. But, we keep going.

...even if it was a bit scary for us at times. 

Sometimes we even learned something about each other like Seeker can take wonderful photos:) 

I did do lots of science experiments and educational type things with my children on that blog. My friend thought this somehow defined me as an awesome mother.  So I told her, most children have no need for writing practice sheets. They just don't. They will pick that stuff at school. But, my children...they needed more opportunities to practice. So I did my best to give them that. I wasn't trying to make anyone feel bad. She seemed to understand.

 I hope the people who go to my page All Over The Spectrum know this as well.  I don't do it to make anyone feel bad. In fact I assume most of the followers actually do more with their children than I do. But, I felt it was good to start the page because I had been discouraged a few times going onto kids crafts pages where the children doing the activities did the activity better than I would. I assumed it was equally annoying to other autism parents. 

We don't do as many educational activities as we use to do. We are trying to focus on outdoor adventures. We love to go to state parks to hike, fly kites, stargaze, camp and play. And we just got a kayak.....yeah, it took a long long time to convince my husband this was a good idea. I hope it goes well this spring. Pray for us;D

Sometimes I see comments of people saying that they are too tired to deal with these types of things, or that they worry something bad will happen. I get it. I can't guarantee that nothing bad will happen to you, me, or any of our children. So I hope no one leaves my page feeling bad about their parenting method. Only you know your situation and what you can do with your child(ren).

But, here is the truth. At least the truth for us. I cannot speak for every autism parent. It's not just about giving my children a life of activities and adventures. Its also about my husband and I having a life of adventure too. Daily life can seem busy and full as it is. But, when your life is over. Will it seem beautiful? Going to work, then playing online or watching tv. Is that really a full life? I suppose it can be. Especially if you like Netflix marathons. But, I am reaching for the stars when I say I want more for my children. I want them to live a full and exciting life. So when they are elderly in their nursing home beds they remember our little adventures...and they smile:) I also want the same for me....because I'm selfish like that;D

My love hate relationship with April

April is Autism Awareness Month. As a mother with children on the spectrum you would think I would look forward to a month devoted to spreading as much awareness and acceptance as possible. And I do love the idea of it.

Aww community:) It gives us the courage to be the bad ass bitches we all know we can be.

But, the truth is I sort of dread April. I think Autism awareness month would be better if we used the time to focus on the individuals who have autism, not the possible causes of autism.  I can't be the only one to notice an upswing in the frequency of links to these studies during April.

Why do we do this to ourselves? And yes....we are doing it to ourselves b/c autism parents are posting and sharing these studies. I'd rather see that stupid panda raising its hand declaring that it loves someone with autism....than to see another study link. 

I don't know if it's all done to whip society into a frenzy. But, if so, mission accomplished;D  

Honestly I don't care about the rise in numbers. Personally I think a lot of it is just due to there being more awareness therefor more are diagnosed. But, if you share autism graphics be aware...you might be part of the problem.

Way to go! I hope you are happy with yourself;D

I guess in the end, I love autism graphics, stories about people on the spectrum and programs set up to help those on the spectrum. What I don't like are studies about causes. And honestly autism being called an "epidemic" isn't high on my list either. It all seems like a giant waste of time. Unless a study finally concludes and answers our questions, then sharing that shit doesn't help anyone...

Yeah...we get it. You don't want a child like ours

It is super frustrating if you have facebook friends like this.  They don't have any children on the spectrum. But, they post links to articles about vaccine, toxic lifestyle, parental age, not breastfeed long enough and these things being linked to autism.

And it just leaves ASD parents with feelings like....

And what if they discover that your little study is wrong?   Are you going to apologize for the hurt you caused?

Researchers are often  in a rush to get their findings published. This of course just adds to the blame game which usually revolves around mothers. I did not use anti-depressants. But, I know some women did. And when a study was released saying the use of anti-depressants increased your likelihood of having a child with autism...lots of women were feeling guilty. I thought it was bullshit. Well it turns out a few months later there was a different study contradicting it. 

Then there are people who use my children as an example as to why they don't want to vaccinate. 

On the surface this just sounds like they are being super protective. But, I can't help but feel they view my child as "less" than others. And that seriously pisses me off. Researchers say autism isn't caused by vaccines. Even if you think they are full of shit and there is some huge cover up. You are basically saying you would rather risk your child's dying than them getting autism. You would rather your child be dead than to be like my child. I can understand not wanting your child to have autism. Hell, I don't want my kids to have autism. But, I'd rather have them the way they are than for them to be dead. But, maybe that's just a me thing. 

I want to assume they post all these links because they are trying to be supportive. I suppose they are supportive........ just in a really fucked up way.

It comes across as blaming the parents. As if we need any help in that department.  Like, "Hey look...you did this wrong. That's why your child is like this. I won't make the same mistake you made because I'm a better parent."  Well isn't that great that you are so fucking perfect and know everything? Thanks for taking the time to educate me. I guess you made your point. We totally deserved this to happen to us because we don't use all natural shampoo. If I had only known about this company that uses scare tactics to sell their products we could have avoided autism. Lesson learned.

Then ASD parents blame themselves for things that are probably complete bullshit to begin with. (I am very much guilty of this.) As if we don't have enough to deal with as it is.  Good thing we have other ASD parents who understand and can offer us some comfort after we read your links.

So all of you bastards who think you are so helpful by posting your study links, and scare tactics can go fuck yourselves. You are not being helpful.....you are being hurtful. So do something helpful to redeem yourselves.

Not every comment or link is as passively aggressive as the examples above. Sometime people are just flat out insulting. This has never happened to me. I have never heard someone say that they don't want to have children because they don't want special needs children.  I think it's because I live in a fairly religious area.  But, I had heard enough of this crap from other people that I created this card.

Even if your child was born perfect. There is no guarantee that they wouldn't get sick or have some sort of accident in their life. There are no guarantees like that in this world. If you don't think that you can love a child unconditionally then you shouldn't have any. I don't say this to shame anyone. I have friends who have chosen not to have kids because they want to be able to travel, focus on their careers etc. And I completely respect that. But don't use special needs to make your point. It is beyond hurtful and it makes you look incredibly shallow.

So yeah.....we get it. You don't want a child with special needs......because you are a complete bastard;D 

An open letter to my haters....

you suck!

Sincerely,
Kristi