Wednesday, July 17, 2013

"You Have Autism"

I have seen a lo of questions on Facebook on when if and how do you tell your child thy are autistic. Answers range from don't tell them to sit down and have a long talk. There is no right or wrong way to approach the subject. Every person is different. Except the don't tell them that is the best way to make your child think there is something wrong with them by hiding things from them.

I have mentioned before that we never had a big sit down talk with Roger or Lucy about their autism. It was just more of a known fact around here. We never left the room or talked in hushed tones about it. Whatever needed to be said would be said regardless of who was there. Talking in hushed tones just makes the child feel like there is something wrong with them.

Roger was dx at age 11. Lucy at age 7 (though suspected since age 2) I had a couple of books about autism on he table he saw them and asked so this is the brain thing I have. Yep was my response and that was the end of that. No drawn out yes but you need to know there's nothing wrong with you etc. Just straight forward answers. He doesn't want a lot of drawn out info he wants facts.  Lucy I don't think anyone has ever directly said you are autistic she just knows.

Both kids have read the books that they are interested in. If they have a question we answer it. For us there was no need to stress out over telling them because well it was a known fact in the house. They have always been present at Dr. appointments so they hear everything. They are never asked to leave. They play a active role in any therapy which led to the decision to stop all therapy. Roger has been present and a active voice at every IEP meeting starting in middle school.

So while you are thinking that telling your child is going to be this great life changing moment. That you may hurt them. Really they already know (you think your hiding your talks your not)  and by bringing them into the inner circle and having them actively participate to their abilities only empowers them.

Friday, July 12, 2013

Summer Fight

Ahh summertime apparently known as test moms patience. The attitude and disrespect are high in this house and mom has had it! First a little backstory:

John Got suspended three times at the end of the school year so I took away the beach trip in August from him. He knew this was a consequence before the third suspension. So no i did not just throw it on him after the fact. He was warned.

Then I decided if he completes the summer reading program at the library he can earn the trip back. Let's see mid July and he has read maybe a hr. There are 3000 to complete I was going to let him go at 2000 (didn't tell him) but he's not even trying so it's like crap I'm going to have to follow through with no beach trip.

Now we also have issues with John bullying the little kids. He says mean and nasty hints. Once he said I get to go to work with dad and you don't to Lucy. I overheard and he spen the day in his room was not allowed to go o work with dad. Did that stop it nope he just keeps going. I just don't know how to get it though his head. Nothing we do stops it. We ground him and he pulls the I want to go to my moms house. 

Then there are the video games. He is addicted to them. I let the kids play in the morning but at lunch time they are done. Well the other day I said no more games for the day. I left the room to clean up the bathroom I come out and there John is on the WII. Acting like he didn't know. I got mad and all he said was I'll just play them at my moms. 

Then today he is dropped off here so I can watch him while mom works. I told m no video games for you today. I leave the room I walk out and there he is controller in hand. I looked at him and said that's twice you have gone behind my back and done exactly what I said not to. His response well the little ones were playing. Well they are allowed they served out their punishment for not listening yesterday.  Common sense would tell one set the controller down, nope I walked away and he kept playing. 

Anything I say I am met with dirty looks and a smart mouth. His mom has told me whatever the punishment she wants to know so she can enforce it at her house as well. Even with both houses four parents standing together nothing is getting through this kids head.

Reall I fear for him when he hits middle school. With this bully attitude someone is going to hurt him. He is not dumb by any means he's in 7th grade math in 6th grade. I know he has a brain but he would rather be seen as the cool kid than the smart kid. I have even tried to tell him guess where all the cool kids who play stupid end up? Yeah losers while the smart kids have good lives. 

We are just lost with this one. He thinks he is going to be some big time gamer as an adult. Yeah that's just as likely as becoming a pro athlete. Sure have your dreams but have a backup just in case. 

Monday, July 8, 2013

In Defense of Goodwill

If you haven't hear there is a new bandwagon to jump on. More petitions going around, more half information being spread and getting people all riled up. I'm sure all is meant well but if you don't look at the big picture not just a tiny portion of it you could end up doing more harm than good.

This weeks bandwagon cause goodwill. There are some people on the payroll who make well below minimum wage. This is legal so no laws are being broken. Now on first glance one immediately jumps to how dare they pay disabled people below minimum wage. How dare they treat them as less than. OK I get it but you are only looking at the dollar amount. You are not looking at the person or their situation.

Several news reports have been made slamming goodwill and their pay scale. They even have a line of disability activist that they speak too. Who of course say this is wrong, its degrading, etc. You know who they don't talk to, the people working at goodwill. I'm sorry but I don't think a "advocate" with a six figure salary gets it. They don't have to worry about money or insurance they already have it. 

Your probably wondering where I am going with this and how could I even think what they are doing is right. I'm getting there I promise. There is another issue that has not been discussed in the media when it comes to goodwill employees. Social Security. There are a lot of people who work at goodwill that also draw social security and disability. They can only make so much money, $1 more and they will lose SS, disability, medicaid, and any other assistance they may be receiving. 

Now your probably thinking well if we raise their pay then they wouldn't need the assistance. Not necessarily true. Have you every tried to live on minimum wage and nothing more. So the rally cry of lets bump everyone to minimum wage could leave people in a worse place than where you think they are at $2 a hour. Now they have minimum wage but zero assistance. Their SS is gone their medical insurance is gone. So how have you helped? That's nice you feel good about yourself but what about the people who's lives you turned upside down because you didn't look at the whole picture.

I know a lady who works for goodwill and I asked her about this. She did not tell me how much she makes just said it was under minimum wage, but she was OK with that. She is a older lady and draws SS. If she makes to much money she will lose her SS and not be able to make her bills. For her work is not about the money, it gets her out of her house and with people. She says she likes it there. That she is treated with respect and feels appreciated by the managers. 

I also know of a woman who does similar work for another organization. If she was to make minimum wage she would lose SS, medicaid, her mother would lose the respite service that the woman herself (not mom) loves.  Not only would the woman be in a worse place financially but emotionally as well. How would you feel if every month you had to ask family to help you out with your bills? What if something you love where your friends are was taken from you? 

That is just two people I personally know, but what would others say? Has anyone starting the petitions bothered to talk to them? Ask the people who would be affected by their petitions what they think? How will this affect you? 

I'm not saying those jumping on the bandwagon are bad people. I know they think they are doing right, but once again they are only looking at a tiny portion of the picture. It's easy to look through your glass walls and think this is what they need, but if you don't ask the people it affects you just don't know.

Friday, July 5, 2013

Presume Competence But......

Alright I know I may get some flack for this one. I am completely in the school of thought to always presume competence. I get mad when people want to baby or think my kids can not do something without knowing the whole story. We all have weaknesses. We all have limitations. That is not a bad thing. What's bad is hiding your head in the sand and ignoring ones limitations. What I say is always presume competence but do not overlook limitations. It is OK to test the limits we all test our own limits but do not push it to far.

Right now I am fighting with my ex over just this issue. He made a big stink at the end of the year that he wanted Roger more that he wanted to get to know him. That he is not really autistic that it is my bad parenting. etc... I said fine you want to see him that's great. Well it is not so great. They have been using him as a cheap babysitter. He takes him on Monday I pick him up on Friday and Roger spends the week watching two young kids anywhere from six to ten hours a day for little money considering what daycare and other private options would charge.

I found out and I spoke up. Six to ten hours a day with two young kids five days a week is a lot for any fourteen year old. I brought up do you really think your best option for childcare is a fourteen year old autistic child who has seizures? The kicker here is he thinks all Rogers dxs are wrong. I asked what if he gets overwhelmed and has a meltdown what do the little ones do? I already know the answer. Roger says they just keep picking at him. Sure Roger has awesome control over his meltdowns (this has come with age a maturity I think) but what when you and your wife are two hours away what is he supposed to do if it gets to be too much? What if he has a seizure? DO your kids know what to do?

I have tried to explain that yes Roger is perfectly capable of watching his siblings for short periods of time. Roger has also voiced that ten hours a day is too much for him. That he does not want to do it any more. His dad is you said you would so now you have too. Wait hold on a second he is telling us that it is to much and he can't and doesn't want to do it. I'm all for sticking to your word but we also need to listen to him when he tells us his limitations. When he says something is to much we need to listen and find out why? Is the time to long? are the kids not behaving? Does he just need a break during the day?

My solution for now is I signed Roger up for some camps he was interested in. Band camp, digital arts camp, a robotics camp that the school offers. We are waiting to see if we received any of the scholarships for the different camps.He also has a day surf camp in August. No way is he giving that up. He has also shown interest in going to work with husband who is a general contractor just to see what they do. Really are you going to tell your kid (who by the way you see all of a weekend every two months during the school year) no you can't go you have to babysit because I don't want to pay for daycare? Sorry but your kids are not his responsibility. They are yours and Roger never intended to give up his whole summer to watch kids. As I type this he is texting his friend in the neighborhood who just returned from vacation about hanging out this week and just being kid. Swimming, video games, sleepovers, etc... Roger is fourteen it's time for him to be fourteen. He has plenty of time to work and have adult responsibilities later.

Tuesday, July 2, 2013

Prescription Toothpaste, Lost Keys, Old Men, & Books Oh MY!!!

We had a crazy day yesterday. First off three of the four had dentist appointments. Sounds easy enough right. Ha Ha this day was going to take a act of congress to pull off. First off the dentist is a hour north and husband has to work. This is when a second car would be awesome but we don't have that option so on to plan B.  Luckily the house he was working on near the dentist so I could drive him to work and take kids to their appointment. Have I mentioned we live in a metro area that is known for awful traffic. SO the plan was made we would all get up early and get on the road.

This is a real Picture of our traffic.
6:30 am : We all get up and hit Wawa on the way out for breakfast. The kids like these sausage things wrapped in pancakes. Really where else can you feed four kids for $4. Then we hit the highway and there they are the brake lights. This is going to be fun. Radio is saying highway is backed up for miles. Great we are going to be late. Oh wait we have six people in the truck HOV it is. I love HOV we can drive past all the others stuck in the parking lot that is 395. We get husband to his first stop (boss man will give him a ride from there until end of day) and off to the dentist. Then we have the entire day to kill. No point in driving all the way home to turn around and come back.

9:00 am : Dentist went fine. Two of three kids have cavities (darn asthma meds). One of the filings the dentist says insurance wont pay for the filling but it needs to be done. Yay! I'll call insurance later and see if I can't get them to cover it. Did you know there is prescription toothpaste? Neither did I. But there is and now my kids have it. The boys teeth have been weakened by years of inhalers. Lucy just has weak teeth. This stuff is supposed to help give a little extra protection.

11:00 am : Dentist done call husband see where he's at and how it is going. He will be done at 4:30 pm. So we have five and a half hours to kill. Husband is on the way to the second job of the day. He comes to meet us at the bank to give me cash for lunch. While we were at the bank we ran in to see if Roger could put the cash he had on his prepaid card from the bank. Nope they can't do it. Oh well we all walk back to the truck and where are my keys. I can't find my keys. Go back in bank and there they are on the counter.
Keys 1 - Mom 0 (you might want to keep track of this.)

11:00 am : Roger has money and we need cereal. So off to Target. Kids can't eat yet so we wander around the store a bit. Roger finds what he wants and buys Lucy a present for her birthday.

11:45 am : We went to McDonalds for lunch. Seriously people see you come in McDonalds with four kids they look at you funny. Everyone got kids meals because they had minions for toys. We must have minions. Before we left they each get a ice cream cone because hey you can't beat 49 cent ice cream cones. Plus we still have time to kill. Alright time to go. Reach in purse. Where are my keys? Are you kidding me Where are they? Go up to the counter and ask has someone turned in a set of truck keys. She says yes then she wants me to describe my keys. Really? Describe my truck keys they are keys how many morons have lost their keys in McDonalds in the past hour. Lady your lucky I can describe my kids. I got the keys back with the description of they are keys. Think it's easy quick without looking describe your keys?
Keys 2 - Mom 0
Ice Cream and Minions

12:30 pm : Done with McDonalds crap four more hours to kill. Try to call a couple of friends they are busy. Alright then library it is. It's free and it is air conditioned. My kids love the library so killing a couple hours here is easy. At one point when we went to the restroom we saw that they had a book sale. Not only a book sale but a buy one get one free hardback fiction, and they had Stephen King.

I decided to look cause you know how we are with books in this house right? We don't say no. Back to my looking. The area they were in was small. Maybe the size of a large bathroom stall. There was a older gentleman there looking as well. He had just pointed out the sign to me. Guess buy one get one gets his attention too. Well I bent down to look at the bottom shelf and he stepped back. Next thing we knew he was going down, I was trying to get up and stop him. Somehow we both managed to somewhat stay on our feet. He laughed and said at least I feel on a cute girl. Good thing we didn't get hurt don't think I could explain to my wife, well I was at the library and I fell on this girl. I don't think she would buy that one. We finish up with no other events. I pay for the books we were buying $5 for seven books not bad. Go to the truck. Crap where are my keys. Yep I had pulled them out while I was paying and left them on the counter.

Keys 3 - Mom 0

2:30 pm : We leave the library and head to the park that is located at the end of the street that husband is working at. I did not know that it is one of the nature centers. Of course the kids want to go hiking on all the trails and um no mom had sandals and a skirt on. I promise that next time I will wear the right clothes and they settle for the playground. They spent the next two hours running around the playground. Just so I didn't lose the keys I left them in the truck.
These could be my keys. I don't know.

Final Score
Keys 3 - Mom 1

4:30 pm : We pick up husband and head home. Boss man laughed when I said everyone in your seats and said "everyone get in your assigned seats." Hey now he has four boys himself so he knows how it goes. HOV lane again and home. 

See we survived a whole day not knowing what to do just four kids and I. Guess what we are doing it again tomorrow. Kids want to see the fireworks show and the only way we can do it is if we go to work with husband.  This time I will dress appropriately since we plan on hitting the trails.  I will leave you with some pictures from the park.

We even take books to the park.

Monkey Girl

Monday, July 1, 2013

3 Years

Well it's been three years as of Saturday. Three years that Husband and I have been married. We have known each other much longer it's a long story with a lot of twists and turns but somehow we got where we are today.

Granted come Sunday I was fighting mad at him but hey that happens right. We get over it and move on. Has it been perfect no but it never will be. Does he deal with a lot of my craziness? Yeah. So three years down and who knows how many to go.