Thursday, July 31, 2008

In Awe

NOTE: I wrote this post a couple of weeks ago, but it didn't post for some reason.

I am in awe of many things....

1. I am in awe of the fact that God has provided me with a no-brainer job opportunity. I say 'no-brainer' because I have tried working part-time with kids and it was not really 'part time'. Also, it is pretty much impossible to find a part time teaching job, especially when Daniel's school is so far away...I would either have to find a job that only required 2 hours of working or pay for extended day for Daniel, which would defeat the purpose of working. However, with Daniel's school, medical and therapy costs, I felt like I had to at least try to get some extra income somehow.

So one day, I was sitting in the office at Daniel's school and the idea popped in my head to see if they had any part time jobs for the fall...teacher turnover there is very low so I was just hoping they needed a receptionist or secratary (not to mention that I doubted I would even be qualified to teach there). I casually asked the director about it as she walked by. She asked me about my background and I was soon stunned when she offered me a teaching job. It is a job that I would jump at whether or not Daniel attended school there, and it fits perfectly in my schedule...God gave an answer to prayer that was greater than anything I could have imagined.

2. I am in awe of the comments I have received on the previous posts. I know that you are thinking...'ummm, amanda, you just got 2 comments and they weren't even on the most recent post'. I must say I was deeply regretting my tirade on Michael Savage when I got the fewest comments EVER. I almost deleted them. But then Ella's mom commented. A lot of you don't know Ella, but if you could read her blog (it's one of those where you have to be I feel very blessed to be able to read it) you would know that I strive to be like her. Every time I read her posts, I think of how I would love to just sit and talk with her for hours and learn how to be a better mom, wife, friend etc..... So to have Ella AND her MOM respond was worth a million comments....thank you!

3. I am in awe of my sweet and wonderful church family. The kids and I are making our multi-annual trip to alabama to see my family next week. Once upon a time I considered myself a pro when flying solo with kids. But autism throws a wrench in everyhing. I learned a valuable lesson the last time I flew by myself with the kids....ask for help. On our way out to Alabama, I actually had some older men catch Daniel and return him to me as we were boarding the plane...(he couldn't have gotten too far because it was either going past me or to the rear of the plane. But it was still embarrassing when people have to catch your child for you). I kept thinking 'I wish we had a sign that said this child has autism, and then we wouldn't have to tell every single person we encounter why this is so complicated'. Rude looks (and a few comments) followed us the whole day. Southwest no longer does preboard for families travelling with young children. On the way back I asked if I could have help with boarding the plane so I wouldn't have to rely on strangers to catch my child. When they asked me why I needed help, a suprising answer (to me anyway) came out of my mouth. "my son has a disability." She didn't ask what his disability was, but handed us the golden ticket instead...a preboard pass. I hadn't really set out to get that, but I didn't argue when she handed it to me. I felt like a fraud. Honestly, when the southwest guy boarding the plane asked me what our 'disability' was, I thought I was a goner. I told him that Daniel had autism and his reply was 'autism, huh?'. I was so busy thinking of a way to get out of airport jail that I almost missed him saying, "I have 3 kids with autism and I am going to law school at night to learn about disability law". It turns out that autism IS a disability and Daniel really DOES have it (i know, i know, it is NEVER going to sink in...). Needless to say, I got more than enough help and the trip back was much better.

SO, a week ago as I was dreading (I mean preparing for) this trip, I remembered some TShirts I saw online. They were kind of like the 'sign' I had longed for on our last trip. My favorite was one that said, "I have autism...please be nice to my mom." But most of them sort of defeated my purpose by saying things like, "I have autism...what's your excuse?" Or "Parenting advice not appreciated...unless you have a child with autism". I have to admit, I had a good chuckle over these, but I didn't think they would go too far in winning kindness from strangers. The nice ones wouldn't get here in time, so I emailed a large group of women in the church to see if anyone knew how to make one. I am not crafty, but I knew there MUST be a way to make one.

I am in awe because I was overwhelmed with advice and offers of help. I am in awe that I got a wonderful idea for a saying, "Jesus Loves Children with Autism Too"(from Lance and Karre Orton). I am in awe because my sweet friend JULIE PERRY (of insisted on making shirts for us. (For those of you in Houston, Julie is an AWESOME photographer and videographer...below is a candid picture she took of Daniel at VBS. I will gladly pass on her contact info after you see how wonderful she is and realize you must use her). As soon as I get the shirts on Daniel and take pictures, I will post them. Of course, I would have been more than happy with instructions on how to do it, or even just plain text. But Julie spent time designing multiple ideas and emailed me PROOFS for my approval (are you kidding me? i was like, umm, you are the artist, whatever you think, and by the way, how did I get so blessed to have a friend like you who helps me and even DESIGNS the Tshirt). Needless to say, I am in awe of Julie Perry and the rest of my sweet Christ the King family who all went out of their way to ask me if there was anything they could do to help.

4. I am in awe of my God and how He sent His Son to die for me and also gives me all of these good things of which I am in awe.

5. I am also in awe of the length of this post and the fact that I still have at least one more awe inspiring thing to write about. I am in awe of anyone who has read this far. So, I'll leave the last one for another post (since I can't keep my eyes open). Thank you, sweet friends. I'll leave you with this...

P.S. I sooo wish I could show you the other pictures Julie has taken of our kids...they are even better than this one, if you can imagine that. This one is hilarious because the kids were imitating the teacher who was very animated while telling the story...I saw it happen and knew Julie was somewhere in the room, and I thought, "oh, i'm sure it is a one in a million chance that Julie got a picture of that, but it would be great picture is she did". I had forgotten that Julie is just THAT good...she never misses a good shot.

Wednesday, July 23, 2008

We Are the Champions

Well, I thought about deleting the posts below, because when I told Alex about the Michael Savage thing, he wasn't surprised in the least. Apparently this guy is a 'hate monger' (sp?) in Alex's words and makes his career by getting people riled up. So then I felt kind of silly for falling for it, although, I thought, if he crosses the line this badly on other issues why haven't I heard of him before? Am I just too sensitive about this?

It turns out, this might be his final 'hate monger' episode. I was not the only one who was appalled, and many companies are pulling ads that support his show. Also, there is one company that has radio stations all across Mississippi that is cancelling his show. Michael Savage will not be heard any more in the great state of Mississippi. (I've always had a fondness for that state...) So I guess I wasn't being too sensitive and he went way, way, way over the line this time.

One thing I have learned from all of this, is that I absolutely hate, hate, hate when people say, "oh, Daniel looks fine. He doesn't seem or look like he has Autism!" I know the majority of these people are trying to be encouraging, but I've realized that it makes me feel as if I am just making this whole thing up. Or it makes me frustrated because they just don't know what he is like 90% of the time and they think of rain man or other children who have autism but have different symptoms. There are so many stereotypes and it gets tiring to have to "defend" his diagnosis and explain all of the stereotypes and how autism manifests itself in so many different ways.

But I digress...back to the radio show...This was the first time I have ever written to companies threatening to pull my business if they didn't do something. I know that my emails and letters probably didn't make any difference in the long run, but it was gratifying to see a response and action, anyway. I felt like I had won a great victory somehow. I don't think I will become a regular 'protester', but I must say that victory is very sweet. :)

Saturday, July 19, 2008

OH yeah, and another thing...

Just to make sure everyone reads what this guy said (because I know it is annoying to not be able to just click on it), here is an excerpt:

SAVAGE: Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden ⎯ why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.
Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That’s what autism is.
What do you mean they scream and they’re silent? They don't have a father around to tell them, “Don’t act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”
Autism ⎯ everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said ⎯ “Don't behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.

And while we are at it, lets highlight another person who is clueless. It is someone on Mr. Savage's website who also put his clueless 'opinion' on autism out there. His name is Thomas Sowell and here is what he said:

Those who diagnose children by running down a checklist of "symptoms" can find many apparently "autistic" children or children on "the autism spectrum."

Parents need to be spared the emotional trauma of false diagnoses and children need to be spared stressful treatments that follow false diagnoses. Yet the "autism spectrum" concept provides lots of wiggle room for those who are making false diagnoses.

Real autism may not get as much money as it needs if much of that money is dissipated on children who are not in fact autistic. But money is money to those who are running research projects-- and a gullible media helps them get that money.

When we first realized that Daniel was a 'late talker' I read a book similar to one that this guy wrote... about how some children talk late and they are just really smart and there is nothing wrong with them. This guy's book is called "The Einstein Syndrome". If you want to talk about sparing a parent emotional trauma, don't try to tell me that the majority of late talking children are going to be just fine. You were wrong about my child and unfortunately wrong about many others.

Oh, and IF ONLY I could have gotten a diagnosis for Daniel by someone going down a 'checklist'. The 'checklist' he is referring to is just a screening that pediatricians (who are NOT qualified to diagnose autism....we begged ours to give us the diganosis so that we could get 'help' and she couldn't) use at the 18 month check up just to see if they should refer to a specialist to check for a variety of developmental delays (not just autism).

WE (not the government) spent a lot of money to get a diagnosis because the only place in Houston, TX (with the biggest and best medical center in the world) that will give you a diagnosis and takes insurance takes a YEAR to get in. Precious time that is wasted...oh, but maybe I should have just not treated my son and waited it out. That way when he was 6 and we found out, "oh, you guessed wrong, he really DOES have autism, but it is too late to really do a whole lot about it." I could say, 'well at least I didn't spend the government's money torturing my child for a couple of years. now he will just be tortured for the rest of his life instead.'

OH and speaking of torture, when we did get our diagnosis, Mr. Sowell, you should have seen how much money the government spent torturing our kid: $0. They will however gladly spend lots of money to torture his parents who are fighting to get insurance to pay for things that are medical necessities (did I mention he has seizures...which also happens a lot with autism. wait, is that common in late talking children also?). No, instead of letting the government spend our tax dollars to torture us, we used our own money to torture our child. We spend about $1000 a month for a child who was in his own world and not talking to be tortured into looking like this:

The sad fact is, I would just be so happy if I could make him that 'tortured' at home.

So to recap, Michael Savage and Thomas Sowell are clueless about how autism is diagnosed and treated. Yet they use thier words and voices which reach millions of people to act like they are experts on the matter and say things that are absolutely false (and it is not hard to prove how wrong they these people have fact checkers on their staff? If so, they need to be fired.) They use the power of thier speech and platform to make life harder and more painful for families that are in the trenches dealing with this thing. Daniel is definitely the type of child they are referring to...he makes eye contact more than Rain Man. He smiles. I have gotten so many comments about how people "just never would have known" he has autism. And those of you who have followed my posts know that I have really grappled with having it really sink in that Daniel has autism. Now I know why. All I need to do is take him to Michael Savage and Thomas Sowell and let them tell me everything is going to be fine. Have them list the stereotypes of autism and say, 'hey, in the last five minutes that we have been talking your son has not exhibited any of these stereotypes...he's fine!'.

one of my worst fears....

...has come true. you can read it (or hear it) here

As the week went on at vacation Bible school, things calmed down and i was able to have some wonderful conversations about our struggle with Daniel. The majority of the conversations were with people that I haven't had a lot of time to talk with lately and some didn't even realize the struggles we had been dealing with. The subject came up a lot because Daniel was there. I had to tell the adults that were around him to watch for seizures (we have to keep a record of them now). And because I happened to be in charge of his age group, I had to do a lot of working around his issues....And of course, there was the whole he is in a different setting and he is an escape artist thing.

But one question kept coming up over and over that I didn't know how to answer. Since I was with my church family, and knowing what a wonderful and loving family we have, I should have known i would get this question a lot. The jist of the question was, "how are you dealing with this?".

I have an answer now. I was fine until I read that aritcle about Michael Savage. I am not fine anymore. What he said makes me want to throw up. And I am not kidding. I don't even know who this guy is, and I feel so deeply hurt and devastated. Every day, even with my sweet church family, I am battling misconceptions and funny looks from others. I even got a "who is that kid" when I was wrestling with Daniel this week. I know all about the 'who is that kid' statement. It means, 'surely this is a visitor or there is some other logical explanation for this child's behavior'. I guess it should be an encouragement that the person was shocked that it was my son.

I don't know what I think about vaccines, or genetics, or ABA or any of that stuff. I am still trying to convince myself that my son has autism and battle the stereotypes and misconceptions that come with it. I admire those autism moms and dads and advocates that are blogging and on the warpath against the things that they think caused their child's autism or for the things they think will help. I am just not one of those parents...or not yet anyway.

But I will be damned if I sit back and let someone actually say these things and not speak out. And what makes me so sad is that there are so many uproars about things that are politically incorrect that i am sure many will read this as me just being too sensitive.

You know, a very good friend asked me if the reason insurance wouldn't cover Daniel's therapy was because people were 'using' autism to get their kids 'extra help'. I was so confused by that question. How would that even be possible, I wondered? I could not understand what in the world he was getting at. (Of course, he was not in ANY WAY suggesting that we were doing that...he was just wondering if there were other people who were doing that and making things difficult for us). My first thought was, 'well good luck to the person who can get an official diagnosis without spending a fortune'. It wouldn't be worth the money to do that just to get the miniscule amount of help you get in return for your diagnosis from the state, insurance company, etc. I am appreciative or our help, and I don't count it as 'owed' to me. Nevertheless, the person who told their child to 'fake' autism to get a diagnosis to get 'extra' help or therapy would give up pretty quickly. And if they didn't, they would soon regret their decision when they finally got their diagnosis and actually saw what good it did them. This is just a tiny part of what I could say to prove how ridiculous Michael Savage is.

I guess all of this comes down to the fact that it is not what Michael Savage thinks that makes me sick. It is the fact that he is voicing what I know so many people(and probably even people I am friends with) think. I know that it ultimately doesn't matter at all what people think. But it sure would make my life infinitely easier to go back in time and never hear that there are people who think that way about parents with children with autism.

Monday, July 14, 2008

Lots Going On...

I have a ton of things to write about and no time to do it, unfortunately. So here is a brief update, to be followed by more in depth posts later. (As if you are on the edge of your seat waiting to hear about my life :).

Seattle was awesome. The picture above is the only one we have of both of us there. I'll post details later.

While we were there, I got a call on my cell phone from the Meyer Center to make an appointment for Daniel. This is the place that we sent in the paperwork to get an appointment A YEAR AGO. We knew it would probably take this long, so as most of you know, we went to a different place that doesn't take insurance to get a diagnosis. It is about time to get him reassessed, though, and this place would just be a co-pay so we made the appointment. And of course, his issues are so complex, the more doctors that see him, the better.

Anyway, he still has mild to moderate autism (no surprise there), but while we there he had a seizure. Of course, I didn't realize it was a seizure until the doctor told me because it was the kind where you blank out...not with convulsions. I thought he was just doing a no eye contact, shut down, autism thing when he had done it before. And he has had an EEG before that was normal. But it was a very short EEG, and if he didn't have a seizure during that time, then it comes up normal. So now we are going to have to do the 24 hour that works for a 2 year old I have yet to find out, but I am getting a call tomorrow to schedule it, so I should know more then.

Some other things happened with the Meyer Center, one of which is an amazing story of a miracle, in my opinion. But all of that will have to wait. I am in charge of toddlers for VBS at my church this would think that such a small percentage of the population at VBS wouldn't be that much work. But organizing and directing the 3 classes of 2-3 year olds is kicking my butt. Note to self: Never, ever agree to be the actual DIRECTOR of all of VBS. (I love you Catie Brow!! You are amazing!!)

More to follow...