A Dream

The other night I had a strange dream...I'm sure part of that had to do with the fact that I was watching Star Trek late at night....but still, this dream was interesting.

So let me tell you about this dream of mine.  I dreamt that we took Rigden's memories and such from his brain and put them into the brain of a different child who had recently died. This other child did not have autism and thus the process not only saved the child who died,
but also gave Rigden the chance to be 'normal'.

Sounds pretty awesome right?!

Well, in my dream, after the 'new' Rigden was up and talking to us I looked over and saw his old body lying on the floor, lifeless. And I just couldn't handle it. I suddenly wanted my original Rigden back and asked if we could undo what we had done. The doctors told me I must try out this new situation for a week before I could decide if I wanted to reverse it.  But I just didn't feel like I could wait that long!  I wanted my own little boy back right that instant.....and then my dream ended and I woke up.

Like I said, very strange dream.

But, it made me realize something.

Even though I wish Rigden could be 'normal', that he didn't have to struggle so much with communication, motor skills, sensory overload, and a multitude of other issues, I LOVE him just exactly the way he is!!
He is my little boy, I made him and he's the ONLY Rigden I ever want!!
Despite the daily frustration, stress, crying, and wondering why we have to go through this....I still love him more than anything and nothing will ever change that!

"Don't try to understand everything,
because sometimes it is not meant to be understood, but to be accepted."

Sensory Activity Idea-Tape

Here we are trying to paint some walls and little Mister 'R' decided to be 'helpful' and peel the painter's tape off the wall (before we were done painting)!
But, it gave me an idea!  I thought, 'I like peeling painter's tape of the wall-it's kinda fun, so I bet that's why Rigden likes it too!'
So my idea was born. I decided to put blue painter's tape up on the walls in his room and on the door frame. He didn't touch it at first but I showed him he could take it off and we went to town! And as a bonus, he had fun playing the with stickiness of the tape afterwards.

If you wanted to take this fun little idea further, you and your kid could put the tape up together and try to make big pictures on the wall with the tape (think stick figures, etc.).  Then let your kiddo pull it off and have fun!
It doesn't ruin the paint on the wall so why not!

A Matter of Perspective

Sometimes I feel like my life isn't that great....well, who doesn't feel like that sometimes!?
But lately I've been reminded that a lot of the time things are just a matter of perspective.  For example, I hear people talk about their kids and listen to the 'complaints' they have about them.  A really common complaint is that their kids are picky eaters and meal times are not that great of an experience.
And I silently think to myself...'you have no idea!'

I can honestly count the amount of items Rigden will eat on my fingers!  And with a lot of things he will eat, we have to force him to take the first few bites before he'll eat the rest. We also still have to spoon feed him most things. He's getting a little better at feeding himself pudding, but he still needs help.  If our meal times were anything like everyone else's (yes, the ones they're complaining about) I would be ecstatic! 

Obviously my perspective about things is much different than most peoples. And I know there are several people out there who have it worse than we have it with Rigden...and our situation would be a dream come true for them. So their perspective is obviously much different than mine.

What's my point?  Well, I think that a lot of the time we take the small things for granted. If there's one thing I've learned, it's that it is the little things that count.  Those little things that usually go unnoticed are in fact the things that matter the most.  It's easy to take things for granted, but in this situation of ours I am forced to see things in a different light.

So, since it is nearly Thanksgiving I decided that this year I would be grateful for all the very small things that make my life wonderful.  One of the small things I am grateful for: my sweet little boy loves snuggles and hugs and kisses. I know there are many autistic children who do not like to be touched and frankly I would find that so difficult to not be able to hug my child. I am so thankful that he loves snuggles! It's not always convenient to snuggle him when he wants and he is getting to be a big boy which also makes it hard to snuggle.  But I would be so sad if he didn't snuggle.

In the movie, Willy Wonka and the Chocolate Factory,
there is a part of one of the songs that I've always liked.
"If you want to view paradise, simply look around and view it."
I don't know why I've always liked this, but I think it's a good reminder that when we feel like our lives aren't going that well and we would like to see something good about it, a lot of the time it's simply a matter of just looking for the good.

If you look for the good, you will find it!


"If you want to view paradise
Simply look around and view it
Anything you want to, do it
Want to change the world?
There's nothing
To it."

Good Timber

The tree that never had to fight

For sun and sky and air and light,

But stood out in the open plain

And always got its share of rain,

Never became a forest king

But lived and died a scrubby thing.

The man who never had to toil

To gain and farm his patch of soil,

Who never had to win his share

Of sun and sky and light and air,

Never became a manly man

But lived and died as he began.

Good timber does not grow with ease:

The stronger wind, the stronger trees;

The further sky, the greater length;

The more the storm, the more the strength.

By sun and cold, by rain and snow,

In trees and men good timbers grow.

Where thickest lies the forest growth,

We find the patriarchs of both.

And they hold counsel with the stars

Whose broken branches show the scars

Of many winds and much of strife

This is the common law of life.

-Douglas Malloch

What You Do With What You Get

The last week of May had to be one of the worst weeks of my life!
Rigden started crying one night and couldn't sleep all that night.  This happens ocassionally, so we didn't think about it too much. But he continued to scream all night every night after that, and a few hours during the day. And the screaming turned into being violent and trying to hurt himself (banging his head on the wall, flinging himself off the bed). Finally, on the 7th night of this it got so horribly bad we didn't know what to do, so we took him to the ER.
Our doctor thought he might have an ear infection and I thought his tooth might be bothering him because I was pretty sure he had a cavity. 

Anyway, we took him to the ER at 2am.  Everything takes FOREVER in the ER. Good grief, I'm guessing that unless you are gushing buckets of blood you don't get very fast service.
So the doctor checked him out and didn't find any sign of infection but ordered a dose of sedative because Rigden was so out of control.  After what seemed like a thousand years, round #1 of sedative finally got there.  Unfortunately he was so wound up by then that the sedative had zero affect.  So the doctor ordered round #2 of sedative.  After what seemed like a thousand more years, we got that too. Rigden still fought this dose, but after a few minutes he finally fell asleep at 4am.  Brent and I had not gotten any sleep that night (or very much the previous 6 nights).  Can I just say we were so exhausted!  We had to hold Rigden down the entire time to keep him from hurting himself which is no easy task!  That kid is 40 lbs of pure muscle (I kid you not).  I also had a cold, so needless to say I was pushed beyond my physical and mental limits....far beyond. 
After Rigden fell asleep, they had some nurses come in to take some blood to double check for infections.  And even though he had 2 doses of sedative and 5 people holding him he still managed to wiggle his arm enough that his blood vessel broke. Thus the nurse had to stick him a second time in the hand to get some blood out of him.

Definitely no infection.

The ER doctor (who drove me bonkers by the way) said he made some calls and felt that the problem was just that Rigden was having a 'bad spell' that autistic kids usually have. I was too tired to argue with him at that point, but seriously! How in the world could this just be a 'bad spell'!  This was 10 times worse than his normal worst behavior and he had never tried to hurt himself (and other people) like that EVER before!  And despite the fact that we told the doctor that, he didn't seem convinced anything was wrong.  In fact, we had to tell him 3 times that this had been going on all week before he realized what we were saying. AAAHHHH!!!! Sorry, just had to get that frustration out. So the doctor told us we needed to go see a pediatric psychiatrist to talk about his behavior.  We finally got to leave the ER at 7am.
When we left, a group of nurses (none of whom we saw that whole night) we're all saying 'good, poor little guy finally gets to go home'. So I know that probably the entire ER could hear Rigden screaming for 2 hours!

Also while we were leaving we heard a code blue called and saw a guy coming in the ER just bawling. Good reminder that things could always be much worse.

Anyway, I talked to our doctor and told him I wasn't convinced that this was just bad behavior and that I thought the problem was his tooth. Rigden hadn't been eating well at all and didn't even want things that he loves and that he will always eat.  So we got in to see the dentist a day earlier than originally scheduled and found that he indeed did have a cavity.  The next day we went in to get it filled.  Rigden was sedated again (this time it was kind of funny because a few minutes after they gave it to him he just sat there with a big goofy grin on his face-totally cute).  They strapped him down and Brent and I held his hands while the dentist started working on his cavity.  He worked really quickly despite the fact that although Rigden was sedated and strapped down he could still wiggle his head free. (I'm telling you, pure muscle).  The cavity ended up being much deeper than the dentist thought, so he had to numb Rigden up a little then continue drilling and filling. The procedure ended up being a little longer than planned because of that, but the dentist did everything as quickly as possible and did a really great job. He was totally nice and patient, very good dentist!
The cavity was so deep it went down to a nerve. And ever since we got it filled Rigden has been a million times better!  He is back to his normal self again, eating well and sleeping better and enjoying the things he likes doing.
So here's where I get to validate myself, I was right, something was bothering him and he just didn't know how to communicate it to us. It just got so painful he couldn't take it anymore and I'm sure lack of sleep made the problem worse.  I just wish we could've figured it out much sooner!  I guess if this ever happens again, we will know for sure something is wrong-it's the figuring out what that is that will be the hard part.

Whew, now that I got that out of the way I will explain the title of this blog post.
During this whole situation the one thing that kept sticking in my head is:

In life, you get what you get.... It's what you do with what you get that is important.

Everyone gets what's hard for them and since we're all different we all get different challenges.  But I think we all are challenged equally in the end.  And obviously you can't control what bad (or good) things happen to you. But the one thing you can always control in every situation is your ATTITUDE! You can always choose to be happy (or sad) about the situations you are in.  Trust me, I know it's REALLY hard to have a good attitude when your world comes crashing down and you feel like you just can't take it anymore. But, despite all the bad -there is ALWAYS good.  And you can choose to find the good and deal with your problems the best you know how.
What you do with what you're given is truly the important thing because that's the real test of your character, integrity, and faith!

And now time to practice what I preach!
~During this horrible week we gave Rigden a hair cut which is usually a horrible experience all on it's own. But amazingly (and thankfully) he was sooooo much better than normal this time around!
~Rigden has been letting us brush his teeth longer, usually a very difficult task. (No more cavities for us)!
~The first dentist visit went really well. I mean awesomely well!  The dentist was excellent and Rigden was so cooperative I was wondering who this little boy was and what he did with my real Rigden!
~Rigden has been making some improvement with feeding himself with a spoon.
~Rigden has been using his imagination!  Autistic children don't generally have much of an imagination. As in, no drawing, no building blocks, no craft projects, no nothing.  Let me tell you it is really hard to find activities for this kid to do-especially for someone like me who has some strange desire to do every craft project known to man!  But lately he has been doing pretend play.  I think he's been pretending to be a dinosaur since Dinosaur Train is his all time favorite show.  It almost makes me cry to witness this as up until now I wasn't sure if he had an imagination at all.
~He has been playing with his sister a little bit. Total miracle! Em follows him everywhere and is very insistent he plays with here, but he still usually ignores her.  But lately they have been running around the house like little hooligans and giggling like crazy together.  I love it!
~Em has been such a trooper through the whole absolutely awful week we had.  She was such a good girl even though I'm sure she was tired from not getting enough sleep either.
~My parents were there to help us. My dad and mom came to our house in the middle of the night to stay with Em while we took Rig to the ER.  And they supported us thinking something was wrong and that we needed to figure out what it was.
~Rigden gave me and Brent a great big kiss and smile all on his own (which is rare) a couple days after the ER trip. And Em told me 'I love you' straight to my face all on her own the same day.

We are truly blessed despite the hardships we go through. I am far from perfect about having a good attitude about all this, but I am determined to try my best to look at the bright side and learn from all of this!

The Future is Bright

Rigden turned 3 in January. I was hoping that 3 would be a better age, but so far it's proving to be worse than 2! About a week after his birthday he went into one of his 'bad' cycles. He always has a few bad weeks then a few good weeks. Well, this go around the bad weeks lasted for about 6 weeks and were much worse than usual. Let me just say that my patience was VERY tested! And I must admit I lost it a few times.

While I was struggling with keeping it together, I read a few things that made me feel better. One thing I read was about looking for the good in life. One of my favorite quotes is from the movie Pollyanna which says: 'If you look for the bad in mankind, expecting to find it, you surely will'. And of course the reverse of that is, if you look for something good you will find it! It was a good reminder that even though it seems like everything is horrible, it really isn't. Things can always get worse.

Another helpful thing I read was an article about how your future is what you make it. Your future is bright if you make it that way. Even in a world full of trials and tribulations you can choose to make your life happy no matter what happens. I must say I am very worried about Rigden's future. I don't know how far he will progress, or how well he will be able to handle things as he gets older, or anything! But I think if we just make the best of what we're given, our future will be bright no matter what. Granted it's not always easy to look at it that way, but it's doable!

Fortunately, this week Rigden has been much better and I have regained some sanity. We got him a wool mattress pad which makes his bed softer. Ever since we got it he has been in a much better mood. I think it's helping him sleep better and helping his body not hurt from sleeping on that hard mattress.

We also started therapy again. The preschool we were hoping to send him to no longer exists. So we decided to go to the Occupational Therapist that came to a few sessions when we had help from the Infant Toddler Program. We get to see her twice a month. The sessions are outpatient rather than inpatient (we had inpatient before). We already had one session and Rigden did really well! I was surprised because he doesn't usually do well with new places and people, but he was all smiles and cooperated quite well. We are hoping to work on some fine motor skills with him and help him learn to dress and undress a little more by himself.

I also have to brag about him a little. We got him a toy for his birthday that he loves! It has the alphabet on it and lots of activities you can do (it's a push button toy). Anyway, there's a spelling activity on it. It tells you how to spell a certain animal name by lighting up the letters. Then the letters blink in the order you need to push them. I showed Rigden how to do it a couple of times the other day. Well, yesterday he started doing it all by himself! Now he is able to do almost every spelling question it asks correctly and it's only been 2 days! He is excellent at memorizing, and once he can figure something out he can do it extremely well. Good things do happen!

Even though our future might not be the wonderful one we had originally planned, it can still be wonderful-- just in a different way. Why? Because we can choose to make it that way.
The future is what you make it, so make it a good one!

Ordinary Miracles

I have always liked the song Ordinary Miracles by Sara McLachlan, not just because it's pretty but because of the words too.

Having Rigden in my life has made me notice more of the little things, or ordinary miracles, that I would otherwise have taken for granted. Teaching Rigden is a long, hard, and slow process filled with screaming and lots of tears (his and mine). However, he does make progress and develop and every once in a while he does something amazing. That amazing something is usually a small and quite ordinary thing-at least for most people. But for me, it's truly a miracle.

We had a little miracle happen earlier this week. We say prayers with him each night before bed. I usually say most of it and let him 'fill in the blanks'. The words are always the same except I throw in something different at the end each night. Lately he has been saying more words in the prayers which is wonderful. But what was really wonderful happened the other night. When we were being thankful for things he said 'smiles'. Now, that is not something I have ever said in a prayer before. In fact, it's not really something we mention except for the occasional, "I like your smile." So this was completely a thought of his own. And to have an independent thought AND voice it is truly miraculous for him!!

So, something that may seem like nothing of significance actually turned out to be something really wonderful for us. And I think that's how most miracles go. Everyone has little things in their lives that may seem ordinary to everyone else, but are in fact extraordinary to that person.

"When you wake up every day
Please don't throw your dreams away
Hold them close to your heart
'Cause we're all a part of the ordinary miracle
It seems so exceptional
The things just work out after all
It's just another ordinary miracle today"

Do you always see a miracle?