Saturday, December 29, 2007

Now that you have all forgotten about me....

...I am back. I have been a huge slacker for the past 4 months. (As if you couldn't tell). Not just with the blog thing...but in everything. So to my friends that I haven't emailed or called in a while, it's not you. It's me. And the slacking has ended as of now. Expect me to call or email soon.

In the meantime, an update for those of you who need it. I don't want this blog to be all about Daniel, but my life has been pretty much all about Daniel lately. A lot has happened so it is going to be hard to sum it up quickly. But here goes...

After the last entry on Providence, we found out that the psychologist Alex 'randomly' met DOES indeed diagnose. I stumbled upon this information when I was looking at a list of reccomended professionals on a parent's of children with autism website. Dr. Wood's name was listed and the comment about him said that he was awesome but has not taken new patients for a long time. I emailed the mom who listed him to ask what kind of therapy Dr. Wood specialized in. She told me that he diagnosed and she was stunned that we actually could get an appointment. Alex called Dr. Wood...he said that he was very booked for the next month but would work us in for the next week. The appointment lasted all day. Needless to say, I love him. He was incredibly thourogh with us. However, I did not leave fully satisfied about the diagnosis....solely because of my insanity. The one diagnosis I did not want was Pervasive Developmental Disorder - Not Otherwise Specified. Which means, it certainly looks like Autism, but doesn't fit the very particular criteria for that diagnosis exactly. For many children, this is actually a 'better' diagnosis than classic autism, because it usually means they are more on the high functioning side of the spectrum. It also gives you all the benefits and services of a classic autism diagnosis. You would think I would just be happy to have my diagnosis so that we could move on to the therapy part, right?

Ever since we started down the road of trying to figure out what is wrong with Daniel, I have been driving myself crazy by thinking one minute, 'no, he doesn't have autism because he is _________. And children with autsism don't do that." And the next minute I would see a strange behavior or read some information on autism and think, "he sooooo has autism." I was back and forth like this constantly. I just wanted a clear answer so I could move on. This post is already way too long, so I won't go into all the psychological reasons why I felt unsatisfied with the diagnosis. Dr. Wood did send us a wonderful 30 page report that made me feel a little went into why it was a type of autism and couldn't be anything else....but it wasn't enough to stop the insanity. It is such a difficult disease to diagnose and there are such hazy areas between the different types. I was also burned out of being in overdrive trying to figure out what to do and how to get a diagnosis and what kind of therapy to do. So I just kind of froze and didn't do anything. (Hence, the slacking)

We did have another appointment with a developmental pediatrician scheduled for the end of November. While Dr. Wood is a psychologist, this doctor is a medical doctor who specializes in developmental issues in children. Dr. Wood encouraged us to still see the pediatrician, and we found out that some friends had been to him and highly reccomended him. Also, because Dr. Wood has been out of the loop for so long and not taking new patients, he is not as well known in the medical/autism community. So a diagnosis from the developmental pediatrician is more "official" in a way....I hoped it would be more 'official' for my crazy mind as well.

A couple of weeks before the appointment Daniel had a dramatic improvement. He began to say some words and actually use them to communicate a little. It seemed like he made the connection between words and communication and then he started learning new words like crazy. It was less than 10 words but he learned them in a very short period of time. So when we had the appointment with Dr. Williamson and I was able to tell him about the improvement, I wasn't sure what was going to happen. I thought that there was a very good possibility that he would say that Daniel did not have autism...that he just had a speech delay or something. We had to wait until Dec. 15th for an appointment to go over the 'results' and get the official diagnosis. He began by saying that he did see the huge difference between how Daniel was doing 2 months ago and now. He showed me the graph of some questionaires I had filled out back in September when I made the appointment. It scored Daniel's development and based on my answers, he was below normal in several areas. And then he showed me how he scored Daniel based on seeing him at the appointment, and his graph had him doing much better. So, imagine my shock when he went on to say that Daniel does have autism. I asked him what kind...where on the spectrum he was... and Dr. Williamson said that he had 'classic autism' (not the better pdd-nos) in the moderate range. Whether it is mild or moderate is somewhat debatable since this is not an exact science. But the fact that it is autism and nothing else is very final.

I was relieved to have the answer, but I had to begin the grieving process. It doesn't sound right to say I am grieving, because Daniel is still here and he is still the charming little boy that I love. But I have been told by many people and professionals that it is expected that you will grieve the loss of the expectations and dreams you had for your child...and the loss of life as you thought it would be. And the funny thing is, I occasionally still find myself automatically switching into the "well maybe he doesn't have autism" mode. I don't know if it is just habit or if I still can't accept the reality of the diagnosis. So, I have a long way to go....

But, I am already feeling much better and there are many great developments. Daniel is starting a wonderful school for children with autism in January. He will go every afternoon for about 3 hours. Their preschool program is amazing and there is a lot of good signs that Daniel could move up the spectrum and be in a normal classroom when he starts Kindergarten. If you are interested in what you can pray for other than my sanity :), please pray for Daniel's ability to have speech therapy every week as we switch insurance in February. Our current plan is ending so we have no choice but to put Daniel on the insurance plan through Alex's work....but they do not cover weekly speech therapy. Dr. Williamson actually reccomended speech therapy twice a week, so it is a necessity that he at least have it once a week. Of course, paying out of pocket is not an option either.

OK, deep breath. Finally, I am done. I hate writing things like this, which is another reason why I have slacked on posting. It is way too long and detailed, but it is impossible for me to jump in and act like nothing happened. Be assured that lighter and better written posts are on the way.

By the way, thank you sweet friends who asked me to keep posting...I probably would have abandoned the blog if it weren't for you.

Wednesday, September 12, 2007


Last night we had community group and we were sharing prayer requests. Besides the usual "pray for Daniel and that we can get into a specialist" request, Alex asked for prayer for a work situation. He had to start the process today of going to 20 houses in a neighborhood next to a site his company is trying to develop. He had the crazy task of knocking on every door and offering to buy their house. He has to get 14 people to say yes. He said that he seriously doubted that it would happen.

You probably think this is the part where I say, "and that prayer was answered!". Or, "and he got all 20 houses!". Alas, we don't know the answer to that. But what did happen was this....At one particular house, there was a gentleman in his 60s. He was very kind and personable. He and Alex began chatting. One thing led to another and Alex asked him what he did for a living. He said, "I'm an autism specialist. I've been working with kids with autism for 30 years." I kid you not. He is a psychiatrist...he can't diagnose or necessarily get us into the specialist any faster. But he wants to help us and Alex left his house with a stack of info and his card...with the promise that we could call and he would help in any way he could. More importantly, (to me anyway), Alex left this man's house with a better understanding of what I'm dealing with right now and going through. Also he now has a better understanding of what I've been telling him about Daniel and what we need to do. Coming from a stressed out, over-emotional mother, none of it made sense. But coming from a specialist who has been dealing with this disease for 30 years, (and who is probably a better communicator and much more rational than me) it made complete sense. So, Alex might not have gotten 14 houses, but a more important prayer was answered.

I love it when God answers prayers like that...when He gives you little glimpses of how He really IS working all for good, even if we can't see it. I feel like God is saying to me, "I'm still in this". People don't just randomly knock on an autism specialist's door, offering to buy the house, right at the point in their lives where they are going through the crisis of finding out their son has autism. I think if we really think about it, there are other times when God does this in our lives. I know He has done it before in mine. I marvel and praise him. And then the next hard thing comes along and I forget and I say, "God, where are you?".

Thursday, August 30, 2007

Beach Therapy

Daniel absolutely loved the beach. It also triggered something in his brain (seriously) and he started interacting a ton more. He walked up to his new baby cousin and looked at her and said, "Baby". And he didn't try to throw anything at her when he did it. Our early intervention coordinator said that it was probably the stimulation he got....he basically just stood in the water and stared at the ground, watching the waves go in and out. She asked me how he slept, which was a great question, because he did not sleep at all. Instead of sleeping, he laid awake for hours of the night going "hahbee, hahbee, hahbee, hahbee", "yaaaayy" and clapping. She said this was also normal in a child with the same 'challenges' as Daniel has. Apparently, he was so stimulated, his brain couldn't process everything. Whatever it was, praise the Lord! God knew what kind of therapy that sweet baby needs more than me, or anybody else (including doctors that take ages to get into). He is not cured, but he is certainly different, and in light of the bad news we received last weekend, we have much hope.

Thanks for your prayers. Keep them up if you can. Mainly for me right now, because it is getting overwhelming...I have resorted to (gasp!) using a calendar and (gasp!) organizing papers and such. I have done such amazing feats before, but it has never mattered so much that I keep it up.

Oh, and if anyone figures out what "hahbee" means, let me know. (Maybe it means, "This is better than pouring large bottles of cooking oil in the floor or throwing baseballs at therapists' heads!")

Wednesday, August 22, 2007

Grade school all over again.

Has it occurred to anyone else that facebook is a lot like grade school, or even worse, middle or junior high school? I am sure it has ocurred to all of you and you are thinking, "Gosh, amanda, you are not really with it, are you?". But let me analyze for a are not going to comment anyway, so what does it matter (insert guilt trip)?

As I have been doing facebook, I have been wondering, what is the point? Anyone that I communicate with on a somewhat regular basis, I email. Yes, it did help me get in touch with some long lost friends. But after that, then what? I know there are actually lots of other fun uses for facebook, but bear with me for a second. First of all, you have this profile which is all about you and how interesting you are. The other big part of your profile is your list of friends. So you look at people's profiles and you think, "Whoa, Miss Popular has 500 friends. Not surprised." And of course you also look to see who those friends are...anyone I know? anyone super cool? Finally, (and this is the clincher), in order to get friends, you have to send a note to say "Will you be my friend? Check yes or no."

So now, I go to my facebook and I look at all of my pretty friends. And the list grows, and I get more prideful. And then I feel like i really should add some more facts about myself. Maybe I should change my picture to a more flattering one...because someone with this many friends has to look cooler than that. Oh, and don't forget THE WALL. Now there is something that only serves the purpose of proving to the world that I am IMPORTANT. It is like signing a yearbook. And seriously, if you really wanted to communicate, wouldn't you just email?? Why do we write little things for the whole world to see that we could just SAY or WRITE to the person themselves.

I still love it, though. And I do have some pretty cool friends. The book application has a lot of potential if I ever find the time to put books on there.

OK people, I lied...

...comment already, will ya? I can't go on like this. I know you are reading, so SAY something already.

Sunday, August 5, 2007

I'm going public (and I need a better title)

For some crazy reason, I have only told one friend about this blog...up until now. And that one friend has been a very good reader....she has commented even when I didn't write anything new. I don't know why I have done this. I guess because I don't want to assume that anyone gives a rats a** about what I think about life. And also, I don't want to be vulnerable and say "Hey look at me!"

But all this is about to change...slowly. I am going to start letting people know that I'm here and all of the pressure will be lifted off of sweet Stephanie to think of new and wonderful comments. Not that you have to comment, dear hypothetical friend.

One thing you do have to do, though, is help me come up with a better title. When I first started this, I stupidly forgot the address. So I searched for my title plus the word 'blog'. Apparently many, many people are relying on others to forgive their laziness and assume that if they had just tried, they would have come up with the most amazing title. Well, not me. I am repenting of my laziness and pride in thinking that no title is really good enough...and I am asking for help. Anybody got any suggestions? I thought about something to do with parenthesis (because, have you noticed how I love (love) to put those lovely punctuation marks around everything?). (I don't know why I do that). I tried to think of something very deep and meaningful that would give you a glimpse into the beauty of my soul...but I don't think that exists. All ideas are welcome.

Friday, July 27, 2007

Dumbledore is not Jesus


When I finished book 6 of Harry Potter, I thought, "Oh please let Dumbledore be a Christ figure". And then recently a friend told me that J.K. Rowling (the author for those few of you who don't know) was a Christian. And so as I read book 7, I looked and hoped and searched for signs of Jesus. I won't tell you if I was saw those signs, but I can tell you, without giving away anything, that I was not satisfied in my search. Why? Dumbledore is not Jesus. And neither is anything else that I vainly look to for distraction and comfort. If I really wanted to find Jesus, I was looking in the wrong book. Why do I do that? Why do I look everywhere else for salvation?

Wednesday, July 25, 2007

I'm back

Ok, so I am going to get serious about this blog thing...I hope. While I think of something else to write, here is an email I sent a while back that has gotten rave reviews. Sorry to those of you who have already read it...(Of course this is all a vain attempt to make it onto my friend Stephanie's list of "My friend's blogs". She won't put anyone on the list who doesn't actually write on their blog. So, Steph, this one's for you....)

Who knew?

Daniel has learned a very valuable lesson:

Make a big mess, get it all over yourself, and then you get to have your favorite thing...a bath.

But, here is a helpful tip that I have learned. If your child, say your 20 month old son, were to take a bottle of cooking oil and pour it all over your kitchen floor, do not use towels, mop or your normal way of cleaning up a big mess. Pour cornstarch over it. Or, if it was a very big, very full bottle of oil and you don't have enough cornstarch, try flour. (I used self-rising, but I think any kind would work). Your kitchen will then look like a blizzard hit it, but you can then sweep up the mess and then use the mop.

Another tip: If said son were to run all over your hardwood floors (trying to escape your wrath) and get little oil footprints everywhere, you can use a lemon on small spots to cut the oil and then clean it up.

Now, if I can just get that lovely cooking oil smell off of Daniel....Maybe I should roll him in flour...any suggestions?

Thursday, May 24, 2007

Life Lesson

One of life's earliest lessons should be, "Don't act holier than thou". Because when you do, you are guaranteeing that you will eventually be doing the thing that you were so 'holy' about.

For instance, my husband has been addicted to 'the net' (as he lovingly calls it), for a while now. He has a blackberry aka 'crackberry' (as i unlovingly call it) for work, that he never puts down. Well, not never, but when you are acting holier, you tend to make the offense seem worse than it is. Anyway, he is always emailing and reading blogs. Checking blogs over and over and looking for new blogs to read. I did not understand what in the world could be so fascinating as to turn his attention away from wonderful, holy me. Now I know.

12 hours or so into being an official blogger, I am walking around thinking of potential posts in my head. Is this normal?

It's the end of the world....

My favorite song to sing to my children is not a nursery is REM. Whenever they don't get their way and have a meltdown, I find it amusing to sing to them "it's the end of the world as Lainey knows it, and I feel fine." I feel like I am being a funny, clever mom. I am looking down at them and saying "oh you silly child. If only the world really was all about not getting that candy. If you only knew how trivial that is compared to the rest of life."

And then I realized that God has been singing that song to me my whole life. "Oh silly, dramatic Amanda. Will the world really end if this doesn't happen like you want it to? This is so trivial"

Lainey, my almost 4 yr. old, was talking to my Dad the other day and telling him about all of the exciting events coming up in her life...first there was her ballet recital and then her birthday, and then her friends birthday and then Christmas and then....she thought for a moment... and then heaven. At that point she looked up at my dad and said "Do you think you're going to make it there?"

Now there's some perspective for you.

Here goes nothing...

I am a little amazed that I am actually doing a blog after so many jokes about people being addicted to them. I caved.

Last week I ran into an old friend in the airport. I hadn't kept in touch with her or any of my other friends from that time in my life (RUF at U of Tenn). She began giving me updates on everyone and mentioned facebook. This morning, I dove in, created a profile and began finding people left and right that I have been wanting to catch up with for forever. It was awesome...until I started having questions on what things meant or how to work it. And then I remembered how old I am. And then I realized I am quickly becoming the old person who doesn't know about, or understand, all of those high tech things the youngsters of today use. I am determined to not be that person. So here goes the other attempt to get 'with it'.

Ironically, I don't know whether or not I even want anyone to read this....

Wow, that is a lot of learning about the world wide web for one day...this 31 year old needs to go to bed....