Monday, April 22, 2013

Mommy Wars 2.0

I'm warning you now what I'm about to say is not a popular opinion. By far I am probably mostly on my own. So read at your own discretion.

Mommy wars, oh the fun of them. I'm not talking about the original mommy war stay at home vs working moms. I'm talking about mommy wars 2.0. Special needs vs typical moms. Typically it is seen that special needs moms have a harder fight than typical moms when it comes to kids. I don't necessarily see this as true. I see our challenges as special needs moms as different not always more challenging than typical moms. 

Now before you get all up and arms and leave nasty comments hear me out. Sure typical parents don't fight the schools over IEP's most don't even know what an IEP is, but they still fight schools only over different things such as bullying. They may not have the same behaviors special needs moms see, but they do see behaviors. Special needs moms are running all over town to go to appointments, typical moms sports. While they are running to two very different things they are still running, still juggling multiple schedules. Then add multiple children to the mix.

Every family has their own struggles, problems, and challenges  Many of them we will never see or know about. Each family though has the same goal to take care of their own. It doesn't matter if the goal is the perfect IEP (ha like that will happen) or just to get the school help stop the bully. The goal is the same get the best for your child. Mommy wars don't solve anything. Really all they do is divide parents even further. Frankly I don't have time to compare my problems to yours to see who has it worse. Lets call it a draw you help me and I'll help you. 

We all have challenges and no one has the right to tell someone else mine are worse than yours. Or that yours are not that bad. I've actually had someone tell me while I was in the midst of a self injury issue that well so and so's kid has cancer that's real problems. Really did that solve a thing? No it just added to my stress of I'm trying to get help and I'm getting snide comments instead.

Here's an example for you you tell me whose challenges are worse:
Family A- Special Needs Child
Family B- Pregnant Teenage Daughter
Family C- Drug Addicted Son
Family D- Single Parent Family
So who has it worse? I don't think I could make a call each family has to do what they need to do to get through their situation. They have their own unique challenges.

So lets put the pitchforks down and try to work with each other not against. Don't dismiss someone's problem try and understand. While it may seem minor to you to someone else it may not be. So if all you have to say to someone reaching out and asking for help is a snide comment, do us all a favor and just shut up.

Monday, April 15, 2013

Yep, I'm A Normal Mom

The kids were out of school on Friday for teacher work day. It was also rainy that day as well though warm. Our yard is mostly dirt ok it's all dirt. So add rain it makes for a muddy mess. Once the rain let up the kids wanted to go out so they put on old clothes and snow boots and ran outside. Next thing I know Lucy and Porkchop are in the big mud puddle swimming. So what do I do? I do what any mom does I grabbed the cell phone and took video of it. Then posted it to facebook. I also posted a few pictures so friends could see just how dirty they were. A friend commented you are a normal mom. She didn't mean anything by that comment. She's part of the autism club. I think we all forget autism or not we are just moms.

Yes I am a normal mom. I clean up after everyone. I cook. I wrangle mount laundry. I fight with the teenager. Look for lost shoes. I'm tech support when the kids can't figure something out. We do homework, go to school events. Drive kids around to activities and friends houses. You name it I do it.

Sure there are somethings I do that other moms don't. Calm meltdowns, track medication, document seizures and headaches. Really though for the most part I'm just a normal mom. We just have autism added to the mix.  Yes I also feel like Lois from Family Guy sometimes. Really this clip is my ringtone for when my oldest calls. Check out the Mom song.

Friday, April 12, 2013

Gifts No Guile Style

A while back I posted my shopping post. Basically how we buy things and how some things need to be just right. Well the same thing can be said with gifts. Now I have some family members and friends who will just one day decide I want to get the kids something. For a while I would get phone calls what do the kids need want? you? etc. They are just trying to be helpful and they want to make the kids happy. I do the same thing. I send nieces and nephews stuff just to do it, or I see something i know a friend will like I pick it up for them. Now what if you don't know what? What if they will only wear certain things? Of course interest change, sizes change. So rather than buying stuff no one wants or needs my friends and I devised a plan. So far it works and best of all we can send surprises  See if I call and ask you what size you are you know somethings coming but if I don't have to ask you won't know until the package arrives.

What is this great plan that works for us. Gift lists. I have two. One on amazon for toys, books, and other household items. I also have a Kohls list for clothes. I keep them updated so if we get something I can delete it or as sizes change update. Now my amazon list is a bit of a free for all. anyone that knows me knows I kind of use it as my personal list as well. Right now we are working on redecorating the kids rooms slowly so I will add items that fit in what we are doing. Everyone knows the carpet cleaner I have on there while I really need it I do not expect anyone to buy it for me. Its there so I remember which one it is when I go to buy it. Now if they really wanted to buy me new dishes I wouldn't complain. ;)

You can make a gift list at almost anyplace. Some have it restricted to just babies and wedding but amazon it can be anything as well as Kohl's  Thats why I use them. Oh and Kohl's is super easy returns if its not what we expected.

Now my madness also teaches the kids to wait for things. When they say I want this, ok lets add it to the amazon list. Not only are they not getting it right away, they know there is no guarantee that they will ever get it. When they move on and decide nah I don't want that anymore in a week we just delete it. So see we are helping family and friends as well as teaching the kids things. win win.

A common complaint I hear from autism parents is their children getting gifts that are just not right. This can help stop some of that. I know I know you should never complain about about a gift, thats not what I'm saying. There's no harm in leading people to what are the right gifts.

*I have not been paid for this nor was I even asked to do this post. I just found a easy way to help out with gift giving within my group (we all do it) and thought I would share*

Thursday, April 11, 2013

Response to Comment

I got up this morning did our usual thing and checked my email. There was a you have a comment on your blog email. Yay I don't get many comments. this one to be exact. Now I am not going to use names because calling someone out by name publicly is wrong. I am not writing this to call anyone out. I did want to address the comment though and it will take more than a few lines. Hopefully the person the left the comment will see it.

"When was the last time you returned a phone call promptly or reciprocated a dinner invitation in a timely fashion? Or offered to run an errand for a friend or sibling? How often did you cancel plans at the very last minute? Are you totally co bounced that your life with your kid with autism is a billion times harder than everybody else's, regardless of whether it is truly the case? Do you make multiple, specific demands upon anybody who invites your PreciousDarling AngelFace and then freak out when your edicts aren't met? Because the world ends if my kid practices the piano while your kid is at my house and can hear it?

Does your child hit other kids / pull their hair / destroy their belongings / hurt animals if given the opportunity? My kid is pretty tolerant, but after the third consecutive playdate from which she came home with a WHOPPING big bruise, she doesn't wanna play with her cousin (who legitimately has autism, a special need) because he repeatedly hurt her - and I don't blame her one bit.

Maybe you're being discriminated against and you are regularly excluded simply because he's autistic -- but it's equally possible that you've not held up your end of the social contract for years and years in end OR that your kid (despite being autistic) is so unpleasant to be around that they're avoiding you. "

When I first read it I was upset as would be expected but I reread it and thought about it.  The author sounds frustrated but I don't know them so I have no idea what their experience is.At the same time they seem to be reaching out. I could be all angry myself and fire back with all kinds of assumptions but that will not help anything.  It is clear that they do not follow me or they would know the answers to their own questions.  Maybe it was the first post they have read. I can't assume everyone has read me from the start. (but you all have right? ) SO let me get started. I just want to explain my point of view and address the questions raised. I can only speak for myself.

Not once have I ever said my life is a billion times harder because of autism. I don't think I have ever said my life is harder than anyone elses. On this blog or anywhere else. I've never known anything else so really I don't know if it is or not. I do not make specific demands on people we visit. Now I know some people do, sometimes it is needed such as I have rules I need to follow when my niece visits. Hers are food related and she has a lot of allergies so they are necessary demands. I do I follow them, but its a allergy. We no longer live in the same state anymore but when she was just down the street I always made sure I had food for her in my house at all times. I also know some people even without autism being a factor make outrageous demands when they visit. My kids know someone elses house it's their rules we cannot tell them no you can't do that and I will not tell someone how to run their home. Instead I have taught my kids ways to handle things that may bother them.You don't want to hear the piano you can go play outside or put your headphones on. 

I have been known to call friends and family when I am going out to ask if they need anything while I'm out. I Have taken other kids off the bus because dad hurt his knee or mom was going to be a few minutes later than usual. My neighbors have also done the same for me. I would say I am as good as anyone else with returning phone calls in a timely manner. I try to get back to people as soon as I can. No one can answer every call every time and return every missed call promptly. Sometimes life just doesn't allow for it. I respond to invitations quickly and typically we accept unless we already have plans at the time. It is not routine for us to cancel plans at the last minute. It does happen but find me one person who has never had to cancel something last minute. You find that person and I will be impressed. I do my best but I'll admit it I have dropped the ball on occasion. 

My kids are not aggressive  I know some can be but mine are not. So lumping all autistics into that they hit, destroy things  and hurt animals is just plain wrong. Dare I say lumping any group of people together for any reason and using a blanket statement on them is wrong. I'm sorry your daughter had a bad experience but that is not typical for many of us. Hitting in my home as is in many peoples homes I know is unacceptable. You don't hit no matter what. I do not know your nephew so I don't know the reasons why. Are they being triggered. Trust me I know people that think it is fun to trigger a meltdown (I absolutely am not blaming the daughter here, could be a third person, could also not be the case). I also know that sometimes you don't know why it happens. It could also be a form of communication. I can also understand your daughters point of view as well. We have a couple kids in the neighborhood who are little bullies and porkchop my youngest doesn't want to play with them. I get that. Why would he? Why would your daughter want to? Why would anyone want to go someplace where they get hurt? I would also ask what is going on during playdates? Rather than just avoid address the issue. Even with the neighborhood bullies I went and talked to their parents. One corrected the issue the other could care less. Maybe find a activity that both kids and adults could do together like the zoo or a park.

In my case and why I wrote that post was we it's not only myself other third parties have seen a change in behavior from some people. Nothing else has changed except a dx. We still do the same things. I know that there are some people out there that use autism or other special needs as a blanket statement to excuse behaviors. I am not one that does. I do not allow my kids to use it as a excuse. They are still expected to be kind to others and respectful. I have helped them learn how to handle situations that work for them. Maybe they take a walk, maybe they use headphones, there are a million maybe they do scenarios. Not one of the scenarios is to be violent or rude. 

I don't know what your relationship is with your sister or brother is. I was talking about my experiences. I don't know what happened in our case. I have had nasty comments made in front of me that lead me to believe the reasons are autism.I have heard shes a blogger type with the sarcastic tone and laughed at, then they go on to praise the blogs they follow and love. Hmm and I'm what chopped liver over here. You don't have to love what I wrote you don't even have to like it. You also don't need to be rude about it.  Maybe it is me I don't know. Something changed that much I know. I know I used to get 50 texts a day and now I get maybe one in six months. I was also trying to point out how facebook throws it all in your face. Are my kids perfect? No they are not. 

I also know there are people who reach out to their family members but hit the brick wall. The post was never meant to offend them. They get voicemail and never get called back. They plan a dinner and get canceled on last minute every time. They try and buy gifts but get told thats not going to work after they asked what they should buy. After so long they just stop trying and then they get to hear the complaints that you never call, you never come over, you never? Well they did but you were too busy for them yet now you expect them to jump when you call.  

To the writer of the comment I hope you find the answers you need. I hope you can mend the damage done between your daughter and nephew. You keep going over for playdates so the one assumption I will allow myself to make is that you want a relationship between them. 

Monday, April 8, 2013

Video 2013

Ok You submitted pictures and quotes, you waited and here it is. The video is now live.

Thanks to:
Homestyle Mama
Inner Aspie
Autism Raising Autism
Laughter Could Be The Missing Piece
Mama's Turn Now
And everyone else who submitted and made this possible.

Friday, April 5, 2013

What Would I Say?

One of the most common questions you hear once you have been around a bit is what would you say to a parent new to the autism club?

You know a lot of people start with hey you're part of the club no one wants to join. I don't like that line. I feel like you are already starting in a bad place. I think anyone new to an autism diagnosis parent or the autistic themselves need more positive message. We need to hear theres nothing wrong with you.

 Lets change that from the club no one wants to get ready for an exciting and amazing journey. You are going to learn more about yourself than you ever thought. You are going to learn that you can take on school districts and win. You can ask for what you or your child need to be successful and most of the time people will just say ok. You're going to find out who your real friends are. Some family members and friends are going to walk away because they don't understand and they are choosing not to. Them walking away has nothing to do with you and everything to do with them. Yes it hurts but in the long run it's for the best. Your real friends will be right by your side no matter what.

You will be bombarded with doom and gloom at first, really I'm not lying. I highly suggest not opening any article well meaning family or friends send you. They will just make your head spin. While you are looking for the facts (everyone does it) take time and visit autistics blogs as well. Read what they have to say. Get many different points of view.

The reality is over time your view will probably change. Once you are past the initial stage where everyone tells you all the bad stuff you get to see all the good. Even reading this blog from the start till now my views have shifted a bit. Nothing too drastic but they have shifted. This is true with a lot of blogs. You can see the shift.

You will find your way. You will find what is right for you. If you choose not to follow some therapies thats fine. You are not a bad parent, you are not a bad person, you are being true to yourself and family. It is more than ok to say I just don't think that is right for me or my child. There is no one size fits all. Everything will be fine and welcome to the cool kids lunch table.

Number one thing to remember you are still you, your child is still your child. Still the same person you were before diagnosis. The diagnosis does not change who you are.

Wednesday, April 3, 2013

Autism in Our House

I submitted this to Parenting for their autism essay contest but didn't make the cut. So I decided it was their loss and I would post it here for y'all to read.

Autism in our house is just that autism.  Two of our four children have moderate autism one has ADHD and the baby of the family is a mild hemophiliac.  SO Autism is just something else thrown in the equation.  It’s not a bad thing, in fact it make the kids who they are.  If you wanted to take away their autism my husband and I would say No thank you we are fine.  The one thing about autism we would love to change is the social stigma attached to it.

When a child is diagnosed the doctors throw them to the wolves so to speak in a confusing world of therapies and views that would make anyone’s head spin.  Once we took a step back and looked at the big picture, we threw all therapies out the window.  They were not for us.  What people wanted to change we saw no reason to change.  SO my fourteen year old son paces alongside my cart at the store, he’s not bothering anyone it makes him feel better, leave it alone.  All the therapies were doing were trying to change what bothered other people.  They were not allowing him to be him. 

We as a society are told by large organizations that autism is bad. Autism is evil. Autism steals children. Autism must be eradicated.  Well in our house Autism is beautiful. Autism is part of you. Autism helps you think outside of the box.  Autism did not steal my children. Autism is celebrated in our house.
In short autism in our house is just another day like any other.  Autism does not define our family, we define autism.  My children will have relationships, go to college, get married, and have children, if that’s what they want.  

Tuesday, April 2, 2013

My Big April 2 Post

I know, I know, I said I wasn't going to do this. Promise it's not what you think and I will be brief. You don't need a long rambling lecture post from me. There will be enough of that today. What I will invite you to do is read some of the other posts. I have a good two or three years of posts. Read and share if you like. I invite you to visit blogs by autistics. I will post a list sometime today. I invite you to visit the Autism Self Advocacy Network and read their blog. I invite you to read other autism blogs. But while you are doing all this reading. Really listen to what the writer is saying.
 Other than that I got nothing. No big announcement, no big post, really it's Tuesday and I really need to do the laundry.

Have a great day.

Marge just seemed appropriate for today's big plans. You are all jelaous I know you are.

Monday, April 1, 2013

April Showers Bring May Flowers & Autism

Well it's here April. The month were autism will be all over Facebook for a while. Lots of stats. Lots of reports. Probably some of the craziest studies around. There are two different camps. Autism awareness and autism acceptance. I don't think we need autism awareness  Even if people don't quite understand autism. They know it exists  Maybe they need education? I'd like to think we will get to the point of widespread autism acceptance.

Will I do any big post for April. No, unless you count this one. I write this blog year round. I'm not going to shove it down peoples thoughts  Autism is part of us and our lives everyday. I'm assuming if your reading this it is part of yours too.

SO I will not be changing my Facebook profile pic to autism awareness because my friends already know, they are already aware. I will not do any big special post. (I will do my video I started. You can see the details here. ) I will not light it up blue. I will keep doing what I do everyday of the year. I will talk I will write and will do everything in my power to work towards acceptance. I will participate in events through the autism organizations that I support year round not just in April. I will invite autistic's to take the floor and speak. Most of all I will listen to all points of view. By listening maybe we can find the divide, maybe if we listen to each other really listen we can fix the fractures in the community.