Wednesday, May 26, 2010

Autism...autism...autism.


My son has autism. I was writing about our journey on CaringBridge, but I stopped about a year ago. I thought that I would put all the posts here so you, whoever YOU may be, could read the back story. This starts over a year and a half ago...Wesley was 2 and had been diagnosed for about 6 months. This is going to be a long post, so feel free to skip it...read parts of it...read a sentence...whatever. Just putting it here for info, yo. :-)


TUESDAY, OCTOBER 21, 2008 6:30 AM, CDT

This is the first entry and it's not going to be near as complete as I would like...I don't have that much time. Wesley has a cold right now, but I think he's getting over it.

Here's a little bit about what we are doing as of right now. Wesley is receiving services through Birth to Three (B2T). He sees an Occupational Therapist, who helps with his sensory needs. And he sees Sharon Holbert, who is a developmental specialist, but also an Autism expert. She runs the only autism clinic in Morgantown in addition to seeing clients with B2T. We have Wesley on a Gluten Free, Casein Free (GFCF) diet. This has seemed to help with his sleep and his speech, strangely enough. His sleep got to where he was only up once a night, so we started him on clonidine at morning and night. This has helped dramatically with his sleep, but it has also helped with his extreme energy during the day. He can sit and attend some tasks now. This is also helping his speech, I think.

Ok, that's a snapshot of what's going on. I will write more later.

May the LORD give you increase, you and your children!
(Psalms 115:14 ESV)


WEDNESDAY, OCTOBER 22, 2008 8:57 AM, CDT

Hello friends and family. As I write this, Wesley is sleeping. This is because he was up at 3 in the morning. Unfortunately, this is not an unusual occurrence.

I thought today, I would take you through an ordinary day at our house. First, who knows what time Wesley will sleep till. But most of the time, he is up by 7. Nicholas gets on the bus at 8, so that time is spent getting Nick ready and such. Then Nick is out the door, sometimes Wesley cries over this. But then we put in one of the favorite movies. Right now, it's either Cars, Open Season, or a Spongebob episode. Cars is his absolute favorite though. He likes to make the sounds. He knows the movie so well, that regardless of what he is doing, if he hears a certain part coming up, he will run. He can make the sounds right as they are happening too. Good imitation! I just wish it was of words. Oh well.

Wesley has a very self-limited diet. We do have him on the GFCF diet, but it really isn't a problem with his main foods. For breakfast, he may eat a bowl of Rice Krispies with rice milk. Or he may not. He eats on a little table in the living room. If you give him something that he doesn't want, he's liable to throw a tantrum over it. Tantrums are a common occurrence too. A typical tantrum happens when Wesley doesn't get his way. Then he will throw whatever he can get his hands on, he turns over the table (remember that bowl of unwanted cereal?), if he can't find anything to throw, he pulls his pullup off...regardless of what's in it. He also hits and kicks. I am a mom that gets kicked and hit every single day. Never thought I would be able to say that.

So, far, I have just painted a very ugly picture of my day. It's not all like this. Wesley is so full of love and kisses, it takes my breath away sometimes. He will walk over and kiss me for no reason. And sometimes he wants so many kisses that I get tired before he does! When he enjoys something it is so fully that regardless of how your day has been, you have to smile.

I am going to leave you with that. But stay tuned...there is so much to Wesley that I don't think I will ever get it all down.

Why am I so sad? Why am I so troubled? I will put my hope in God, and once again I will praise him, my savior and my God. Psalm 42:11 TEV


THURSDAY, OCTOBER 23, 2008 10:33 AM, CDT

This must be some kind of record or something. This is my third day in a row writing something...don't expect me to keep it up! But most of you should know me, and already know that. Oh, by the way, put this in your favorites and come back to check up on him often. Maybe even get updates in your email.

Yesterday, I had a meeting with the pre-school coordinator. Wesley will have to have three more evaluations in the next 80 days and then we have another meeting to see the results and see if he will be eligible...he will be. Then we have to put together an IEP. Now, I don't know anything about them and have heard horror stories. Luckily, Sharon Holbert on Wesley's team is great at writing them and advocating for her clients.

We really hit the jackpot when we got Sharon. And it's mostly luck too. The service coordinator for B2T brings you a stack of papers...this is all of that certain type of provider. It has a little spiel about why they are doing this or such and it tells how long they have worked with different age children. That's all...no other parents opinions or anything. Who knows what you are going to get. But we certainly got lucky when we got Sharon.

But Wesley should start pre-school when he turns three in January. Scary thought! My baby is going to be going to school!!! They even asked if I wanted him bussed! My baby riding a bus!!! I'm not sure how I am going to do this! But we will find out soon enough.

“Carry each other's burdens, and in this way you will fulfill the law of Christ.”- Galatians 6:2


FRIDAY, OCTOBER 24, 2008 6:23 AM, CDT

Today's is going to be short. Just wanted to thank everyone for the prayers. Wesley slept through the night last night! Woohoo!! I wouldn't be up this early if I didn't have to be working. But, such is life.

Yesterday was a really rough day. I am unsure as to what was going on with him. Nothing was making him happy. I had a few errands to do and they wore me out with him! First, he didn't want to get in his car seat and then he didn't want to get out! Now, this boy weighs 55lbs! He's not a lightweight! Then, I had to wrestle him into the shopping cart...this while he's trying to take the shirt off my back. Nothing like being stripped in the middle of a parking lot. Then, I wasn't allowed to touch the cart...he made this very clear with the kicking and hitting. Got lots of looks at Gabe's and Wal-mart yesterday. Luckily, I didn't hear any comments about how I should spank him and that would fix him. Unfortunately, autism doesn't get fixed like that. I'm pretty sure it's been tried.

I'm going to leave you with that. Pray that he wakes up in a much better mood today. I could sure use the break.

Oh, one last thing. I am so excited, there is a new Autism Support group starting up at PlayWorks, here in town. I am really hoping there is good attendance! Finally, some other moms who have been here!

"I can do everything through him who gives me strength." Phil 4:13


SATURDAY, OCTOBER 25, 2008 10:43 PM, CDT

I wasn't going to write a journal today, but I have been led to do just that.

Today, Wesley got his Project Lifesaver bracelet. He has never gotten lost, but he does have a tendency to wander. After hearing and going through Jacob Allen's disappearance and rescue, (He is an 18 year old with autism that got separated from his parents while hiking. He was missing for 4 days. He did not have a Project Lifesaver bracelet on, but received one shortly after they found him.) We decided to go ahead and get one on Wesley. It has went much better than expected! I figured we would have major melt down, but he has only bothered it a little. He has found that he can use it to make noise with, so he's been banging it on the floor. Good thing they make them durable!

We have trouble leaving Wesley with anyone other than my parents, so going to church has been rough. 3 weeks ago, I went to church for the first time in about a year. God knew it was that right time. In the room that Wesley was in, He placed a very special lady. Cindy is literally a God-send. She has personal experience with autistic behaviors and was looking for a place to serve in church. Wesley walked right into her lap. So, she's working with Wesley at church and she wants to give us respite. She sent me a poem that led me to write tonight's journal.

THE PATHWAY

One day a follower of the Lord knelt before his Father in heaven. With a prayer on his lips, peace in his spirit, and faith in his heart, he gazed into his Father's eyes. He noticed the Lord's eyes were clear, brilliant and sharply focused. The follower turned to see the Lord looking out at a pathway. The pathway was only visible for a few hundred yards and faded from view behind a small hill. The follower noticed other pathways close by. It was at this time that the Lord spoke---

"The pathway you see is the path that I have chosen and prepared for you. Follow it with confidence, trust and courage. It will perfectly lead you into the plans I have for your life. If you ever wonder where the pathway is taking you, simply look down and you will notice my footsteps ahead of you and behind you.

As you walk, you will notice other pathways close to yours. Some will draw your interest and curiosity. You may be attracted because of flowers that border them, trees that shade them, or the direction in which they are heading. What you don't see is the depth of the valleys, and the steepness of the mountains through which they wind. Those whom I have called to travel these other pathways will have grace for their journey. I do not want you to waste your time imagining what it might be like traveling down someone else's path. If you choose another's path, you will not have my grace upon you, and the valleys and hills will burden you and create a weariness within you.

The time and energy I give you will always be enough for each day's travel, and you will find many resting places along the way. Give yourself completely to the path I have prepared for you. As you do, continue to look upon My face, for My smile will be upon you. Never forget that everything is significant and working together for good. I know where the path will take you, for I have already traveled it. Believe Me when I say that you can never imagine the incredible things that await you."


"For the I know the plans I have for you, declares the Lord, plans to prosper
you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

"These things that I plan for your life won't happen right away. Slowly.....steadily....
surely....the time approaches when the vision will be fulfilled. If it seems slow.....
wait patiently.....for it will surely take place." Habbakuk 2:3


MONDAY, OCTOBER 27, 2008 10:30 AM, EDT

I hope this finds everyone after a great weekend. We had a pretty busy one and I didn't get to spend much time with Wesley.

I was missing him pretty good by the time I picked him up last night. So, he had a big surprise for me. When I was putting him the car, Dad was out there and I was trying to get him to say "bye-bye." This is all normal...he had that and several other words and lost them. But out of the blue, he blew Dad a kiss!! I was so excited! Most of what he does is imitation, while good, spontaneous is much better! This is something that he had before and lost, so I was pretty excited to see it again! He also repeated something that sounded like "love you."

He still doesn't really like his bracelet, but he's tolerating it...thank God! I was expecting full blown tantrums.


You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, Psalm 30:11


TUESDAY, OCTOBER 28, 2008 3:16 PM, CDT

We have officially started PECS (Picture Exchange Communication System.) We started it this morning and so far...I'm not sure how Wesley's going to take it. I think right now, he's just going along with it. I don't think he's really making the connection, but that's what this is all about. Slow steps. We make it very easy for him to begin with, then slowly make it harder. Until he understands the concept and can distinguish between something that he wants and something that he cares nothing about. I think this is going to be really good for him and will make it much easier for him to communicate with other people that don't know him as well. He will be starting preschool in little over 2 months, so I hope this will help.

"Sons are a heritage from the Lord, children a reward from him." Psalm - Chapter 127:3


FRIDAY, OCTOBER 31, 2008 6:18 AM, CDT

Good morning everyone. This week has been a fairly quiet one. Sharon was here yesterday and we are moving Wesley to phase II of PECS. I am so excited that he's doing so well.

Wesley was up at 3 this morning, but he had some regular milk yesterday, so this is what I think happened. Almost everytime he gets milk, as opposed to the rice milk that he usually drinks, he's up VERY early. Ugh!

Next week is going to be a busy one for us. We have two therapy appointments, and two evaluations. We are losing our OT too, so I am going to have to pick a new one. Hopefully, we get a good one.

I will keep you all updated with the appointments next week.


'Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.' Isaiah 41:10


SATURDAY, NOVEMBER 1, 2008 4:29 PM, CDT

I hope everyone is having a great weekend and had a great Halloween, if you celebrate. We took Nicholas out, but Wesley stayed with my dad. All the in and out of the car would have been just too much for him. Nicholas got plenty of candy to share though.

I went to the first meeting of an autism support group today. They are just starting so it will be neat to see where it goes. It was awesome to meet other moms who have been where I am. I was the only one there with a 2 year old. The other kids are between 4 and 8. All of them are already in school too. They are talking about having a play group and maybe a date night thing where they will have sitters so parents will be able to go out on a date! There were 15 people there today. 9 with autistic children, 1 grandmother, 2 providers, and then I thought this was great...there was a gifted teacher there with two of her 6th grade students. They are doing a service project on Autism Awareness this year and are gathering what information they can. They also offered to provide some childcare for the meetings. I thought that was just wonderful! It was interesting to hear where other parents are. I did get some more information about the support group in Fairmont too. I may attend this month's meeting there too. Mom is interested in going. It's so awesome to have such support.

Unless the LORD had given me help, I would soon have dwelt in the silence of death. When I said, "My foot is slipping," your love, O LORD, supported me.
Psalm 94:17-18


SATURDAY, NOVEMBER 8, 2008 7:09 AM, CST

Good morning everyone! And what a great morning it is! Today is my birthday! It's also my oldest son's birthday too. Happy Birthday Nicholas! He's 8 today. We will be taking him bowling today. One of his favorite things to do. He doesn't know about it yet, but when asked what he wants to do for his birthday, he wants to watch alot of Mythbusters (one of his favorite shows) and go bowling. I think we can take care of one of them! Mom and Dad watched the kids last night so Rich could take me out to dinner. We talked about a movie too, but I guess we are just getting too old...we were too tired for that. We just bought some Ben and Jerry's ice cream and went home. Perfect end to a great day!

Sorry, I haven't updated in a few days...as I said this week was very busy. Let's see if I can get you caught up.

Monday, was when Sharon came to see Wesley. He was NOT in a good mood. It was downright ugly. He refused to do a lot of what she wanted him to do...easy stuff too, like give her five. He is one willful child! But if we don't get through this behavior stuff now, it's going to be a lot harder the older and BIGGER he gets. He is ready for Phase III of PECS, so we started that, but he's not getting it as easily as I had hoped. This is the phase where he has to start differentiating between the pictures. We use two pictures. One that he really wants and one that he cares nothing about. We give him whichever picture he gives us. He's figured it out though...he gives up both pictures! He really is a smart boy! We just have to figure out how to USE those smarts!

Tuesday, there was another autism support group, this one in Fairmont. It's been running for a while. They have childcare, so we took the boys. I was very surprised about how well Wesley did. There were about 5 OT students to watch the children. There were 5 children, so it worked out nicely. Wesley tried to escape about 4 times in an hour and a half. But it was really good to talk to other moms and get some new information.

Wednesday, we had the developmental evaluation for preschool. It was sufficiently horrible. As soon as we walked into the room...didn't even shut the door yet...Wesley started screaming. He did NOTHING for the lady. He did calm down a couple of times though...which is an improvement over the other evals! But even though he didn't do the cognitive stuff the way it's supposed to be done, she was certain that he would qualify for preschool. They have to have a 25% delay in 2 areas...yeah, he qualifies.

Thursday, he had his first private speech session. We also got an OT scheduled too. This went surprisingly well. The room was smaller than the one for the evaluation, but he didn't cry even after the door was shut. He did fuss when Amanda tried doing stuff with him, but we got him calmed down and he finished everything that she asked of him. I was impressed. I think it's going to work well. I'm sad because we only get one half hour per week though. He should get some speech through school to though, so that will help.

Yesterday, he had OT through B2T. We went to a park here in town. They have mulch on the ground and all he wanted to do was play in it. Great sensory play! But, we couldn't get him to do anything else. There was one thing I was all excited about. There was a little girl there who was jumping on the rubber bridge. Wesley was watching her. About 10 minutes later he got up, went to the rubber bridge and started jumping! He was imitating her! Awesome! We have 2 more sessions with this OT and then she is moving to New Mexico. We will miss her. But I think that Wesley is going to have a BLAST with the new OT at PlayWorks. He's younger and he will really put him through it! Lots of sensory stuff!!

We also took cupcakes to Nick's class for his birthday. Wesley did very well there. He loves sweets, so I gave him a cupcake so he could lick the icing while we were passing them out to the kids and when I came back to take the paper off so he could eat the cake...he had apparently already eaten the paper! A little fiber won't hurt! :-)

John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the
world."


TUESDAY, NOVEMBER 18, 2008 4:56 PM, CST

Hi! It's the first snow day of the season here in WV...and Nick is praying for a ROUGH winter! :-) Wesley didn't really know what to think about the snow falling...the stares outside have gotten longer, it can be very dazzling.

Lots has been going on, so let me get you caught up. He is doing well on his medicine, to the point that I can really tell when he hasn't had it. His sleep has been good and he's been taking naps again! Wow! We got the results of the genetic testing back, everything was negative. So, we still have no reason for the autism. He has started OT and speech at a PlayWorks and is doing really well there! I have been shocked! I am not as worried about school now, I think he will be fine. Things at church are going well too, if we can get there. We missed this last week because of a conference at Stonewall Resort that we got to go to.

The Families Conference was a blast! We had a great time and met some great people. This was a conference to celebrate people with disabilities and their families. We did not take the kids, Wesley just would have had a rough time. I am sure that we would have heard "go" about a million times over the weekend. They stayed with my parents and had a great time too. It wasn't quite as informational as I had hoped, but meeting other parents was wonderful. Not to mention the food at that resort! Yum!!

PECS is still at Phase III. We need to more practicing with him. We got lazy because he was doing so well, so I am spending every day with him several times a day doing trials.

We have started some supplements too. We are just going slow though. Introduced a multivitamin that he should have been taking for some time since he doesn't eat that well. We have a couple of others that we are going to be starting over the next couple of months, I will keep you updated as we do.

Ok, I need to get some work here at the house done. Talk to you soon!

PRO 4:23 Above all else, guard your heart, for it is the wellspring of
life.


FRIDAY, NOVEMBER 21, 2008 3:44 PM, CST

Another week is almost past us. The kids had a two hour delay here, so Nick was happy. Well, he would have been happier had they canceled, but he was happy enough. Wesley was happy to get to spend more time with his brother.

We are seeing a few more stims here with Wesley. He has started pacing. It's kinda cute because you can see when he's going to start...he clears out a path. He also loves cars, so he has several around. They are one of the few toys that he will play with appropriately. He just started, this morning, putting as many of them in the microwave as possible. Rich forgot about this and started to warm up some soup for lunch...oops! Had to clean out the microwave first. We usually keep the bedroom door shut because we have a bathroom off it and Wesley likes to play with things that he shouldn't. When I got back today, Rich told me that he found another reason to keep that door shut. He wouldn't tell, "just see for yourself," he said. I forgot about this until I had to go to the bathroom. I walked in and Wesley had taken all those toys from the microwave and tried to see how many he could fit in the toilet! Let me tell you, those little bowls can be deceiving! He fit 1 big car, 3 medium size cars, 1 large transformer and a bendy spongebob in there! He can be a creative little thing!

When I went to lunch with Mom, she had Alex, my nephew, with her. I don't get to spend alot of time with him. He's going to be 2 in Feb...so, he's over a year younger than Wesley. He's picking up words like crazy and it's awesome to see what I can get him to say. Today, Mom was drawing pictures of people that Alex knows and asking him to point to "mommy" "daddy" "aunt Misty" "Wesley" "Grandpa" "Alex" "Nicholas" and he would point them out. Now, he doesn't say many names, but he certainly knew which ones they were supposed to be! He was able to point to eyes, ears, nose, mouth, head, tummy, fingers and toes. It's only when I am around Alex that I can truly see how delayed Wesley actually is. Wesley can't do any of those things.

We just recently got him to point to his nose, pat his head and pat his tummy, but they are all imitation. He can't do the correct one unless you show him. Don't get me wrong...imitation is wonderful too! This was a great day when I got him to do this! Just giving this example to explain how delayed he is. And it's a reality check for me too. I am still in denial sometimes...but mostly, Wesley is my little boy. He is who he is. He's a happy boy and I love him so much that my heart feels like it's going to burst some times.

While I was in the hospital this week...went in on Wednesday night for chest pains and they kept me over night. Everything is fine, they have no idea what it was, but they are confident that it wasn't cardiac related. Anyway, a pharmacy tech came to talk to me at one point and we got to talking about our children and she said that she could see how much I loved them because I just glowed when I talked about them. That's what kind of mother I want to be. I am trying to not let Nick get lost in all this autism craziness. Well, for that matter, I don't want Wesley to get lost either. He's a little boy who just happens to have autism. Autism isn't who he is.

Then Jesus took a small child. Jesus stood the child before the followers. Jesus held the child in his arms and said, "If a person accepts children like these in my name, then that person is also accepting me. And if a person accepts me, then that person is also accepting the One (God) that sent me." Mark 9:36-37(ERV)


TUESDAY, DECEMBER 23, 2008 5:04 PM, CST

Wow, a month has passed and it's almost Christmas time. Such an interesting time of the year. So many people start early to get ready for it and then can't wait till it is over. It is such a stressful time of the year, but it is also a beautiful, magical time. I love the innocence and excitement of children.

This is where having a child with autism can be very hard. A friend of mine only has one child and he has autism. Christmas is very hard for her. Her son doesn't notice all the Christmas hoopla and doesn't get excited that Santa is going to be leaving something for him under the tree. This should have been the year that Wesley understood all of that. He doesn't.

His birthday is 11 days after Christmas and we are even discussing not having a birthday party for him. More than likely, he would be much happier if we just had cake at my parents house. And this may be the compromise that we make.

So much has happened this month. We had a good Thanksgiving/daddy's birthday. We spent some time in Oceana with Rich's family. So that was fun. Wesley did much better than expected with that...even though it was the beginning of another stretch of terrible sleeping.

We got an invitation to a good friend's 1st birthday/Christmas party and I was determined that we were going to go. We don't go to other houses very often...for obvious reasons...but these people have special needs children of their own and I was determined. Well, as luck would have it, it decided to be horrible that day! Snow and ice. Yuck! Anyway, we made it to their house and discovered that we were the only guests. Turned out to be a great evening! Nick and their boy decided that they had to be related because they liked so many of the same things. Anyway, made it to get Rich from church and was trying to get home when we wrecked the van...our only vehicle...on the ice. They ended up totaling our van leaving us with nothing. But God works in mysterious ways. There has been nothing but positiveness come from this accident. We were all fine, thank God. But in looking for another vehicle we got offered a van from a couple in our church for free! What a blessing! So, now we have the payment from our van set aside for a down payment on a home! Wow! God is great!!

Ok, to update you on the school situation. It's been interesting getting all this together. The IEP was supposed to be done by Dec 15. We met and got it written today, the 23rd. The evaluation for development and speech was terrible. He didn't do anything except scream and try to get out of the room. The OT eval was different and I don't know if that's because Rich took him for that or not. He did everything that they asked him to do but they did see the sensory needs. We had been told that he most likely would not get OT in school because they don't usually get it for sensory. Well, he has it! That's great news! Now, he's being placed in a room with an autism teacher, 5 other autistic children and 6 peers or typical children. There will be 3 adults in the room. I am not happy with this. I will be talking to other parents and we will hopefully meet with the lady in charge of designating another aide to the room. The teacher can only do so much, I think it's time for the parents to speak up. All in all, I am ok with the IEP. I only say ok, because it really brought home the fact that my baby is going to school! He's never been in daycare and I am pretty protective of him. I have been hugging and loving on him all day...he's not so thrilled with that! :-) Oh well, it makes Mommy feel better!

Ok, I think I have gotten you updated now. I pray that everyone has a very Merry Christmas!

Luke 2:14
Glory to God in the highest, and on earth peace, good will toward men.



I just got this in an email. Thought I would share.


Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions...

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.......


THURSDAY, JANUARY 29, 2009 5:15 PM, CST

Ok, ok, I'm not good at keeping this up. Now that I am not working, I will try harder...I promise.

Now, let's got to the point. Wesley is now 3 and he's started school! It's been an interesting time...but he's doing wonderfully! I think he would be doing better if it weren't for all the snow and ice we have had here! I don't know that the child has been to school two days in a row! But here's praying that the weather stays stable. Today, I took him to his classroom, the teacher took his coat off and he helped to put it and his backpack up. Then he took his folder and put it were it is supposed to go. Then he turned and went to get the baby doll. He's doing wonderfully with pretend play too! He will "feed" the baby and dress and cover her up. It's so neat to see! He didn't even cry! I am so pleased that he's doing so well. He hasn't tried to get out of the classroom, he follows directions, sits through lunch. These are things that I was very worried about. Right now, he's looking at a book, which he had NO interest in before. It's exciting to see!

His sleep isn't good right now. I'm thinking that this is from the holidays when we let the diet slip. Milk seems to be a huge factor in his sleep problems, so think that we are still working that out. Ugh!

Well, I hope everyone has a great weekend.

“Sitting down, Jesus called the Twelve and said, "If anyone wants to be first, he must be the very last, and the servant of all.”- Mark 9:35


WEDNESDAY, FEBRUARY 18, 2009 2:08 PM, CST

Good afternoon, everyone. Just a quick update on Wesley. Today is the first day of the afternoon bus. We were told at first that they could not provide transportation for us because they didn't have enough buses to come up our road. Then when another kid changed his drop off spot, they could get Wesley home in the afternoon, but still no bus in the morning. I am ok with that for now. I can get him to school, it was the getting home that was wreaking havoc on Rich's schedule. Right now, we only have one vehicle, but we are praying that in the next couple of weeks our other car will be fixed! Thanks to Eddie (my brother in law) and Dad!

Anyway, Wesley is still doing well in school, even though he is starting to show his true colors. He was a totally different kid there, he was following directions, sitting still...all the stuff that we were having trouble with. Yesterday, Bethany told me that when he was asked to do something, he would throw himself in the floor and cover his eyes...now, THAT'S the Wesley I know! The other day I ran a bath for Wes while he was watching Cars...one of his faves...and when I told him to come get in the bath, he would tell me "no" and cover his eyes...leaving gaps so he could still see the TV! :-) I have a picture of it and will upload it soon. It was so funny!

I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me. Psalms 13:5-6


TUESDAY, MARCH 10, 2009 11:54 PM, CDT

Good evening. We have had some sickness in the house the past couple of weeks. Both of the kids had strep throat with high fevers and vomiting...lucky us, huh? Anyway, I think we are getting over it...now my parents have it. My sister is having surgery next week, so we will be helping with her little boy. He loves Wesley and Wesley loves him...they just don't really know how to take one another yet. Maybe the extra time together will help. Alex really wants Wesley to play with him, but Wesley doesn't really know how to do that, so they end up chasing each other...Wesley certainly knows how to run.

Alex is just a little guy compared to Wesley, he's also a year younger. Developmentally, though, he's past Wesley. You ought to hear the words coming from Alex! It's awesome to hear, but heartbreaking at times that I am unguarded.

Wesley is going on his first field trip tomorrow. I'm kinda excited to see how he will do. They are going to the ice rink, they will have "snow" to play with on the ice. Wesley has also started a Tiny Tykes Tumbling class for special needs children. Well, he missed the first class because of strep last week, but I am so excited for Friday to get here!

We have signed up as a team to be in the 2009 Walk Now for Autism in Wheeling, WV on May 30th. We have a website where we can take donations or people can sign up to be on our team. I'm pretty excited about that too!

Ok, I know this was a pretty rambling entry...it's midnight now, so that's my excuse. :-)

Each of us has something different to contribute, and no matter how small or insignificant it may seem, it can be for the benefit of all. --Lauritz Mechior


TUESDAY, MARCH 24, 2009 9:10 PM, CDT

Good evening everyone! I just got the kids to bed, so I thought I would jot down some notes for you all. I'm trying to keep you filled in...even though I am unsure who "you" are. It's funny that I am writing this, but I am not really sure who's reading it. I mean, I know that my mom does, but then I am pretty sure she knows all the info that I put on here. Oh well, read on! :-)

Wesley had his first field trip. They went to the skating rink. I thought that he would have a good time...I was wrong, it's not the first time and I'm sure it won't be the last. Wesley started freaking before we even got to the door. He somehow knew that he absolutely did not want to go in there. Wesley is a flopper. If he doesn't want to go any further, his bones just magically disappear! This is not good for a 60lbs kid! We finally got him onto the ice, but he wasn't having it...solved the flopping problem though...he didn't know what to think when his hands got cold! They had sleds for the kids to ride, hockey set up on one end and snow piled in the center. All of the other kids, except one, was LOVING it! Not mine. We did finally get him to walk around on the ice and even got him on a sled. But he certainly wasn't having any fun, and he let you know it! He was way happier just playing on the bleachers and in between the soda machines. Oh well. I had fun watching the other kids.

That Friday was Wesley's first tumbling class, after the field trip, I wasn't too hopeful. I wasn't disappointed either! I let one of the teachers take him in first, but he wasn't happy. So, I took him in. Of all the things in that place to play with...trampolines, foam pit, foam wedges, hula hoops...the child wants to play with the water fountain!! He finally took off exploring, and found a trampoline...I figured he had found his spot, he loves the trampoline at home. Nope, off to the races again. Now, there were 2 girls there practicing and he about got ran over by one of them! He found the foam pit and fell in love!! I sat there with him for a little while, but I eventually left him to return to the parent area. It was neat to see. They didn't have a class this last Friday because it was spring break for the University, but he will have another one this week...I don't know, but we will try it again. I think if they let him in the foam pit that he will be fine.

I just realized that I didn't give my web address for the Walk Now for Autism. http://www.walknowforautism.org/wheeling/wesley

I am doing a craft fair on April 4th at Skyview Elem. from 9-4 and will be donating a portion of my sales to the walk. Come down and take a look at what I have. It's my first craft fair and I am pretty nervous about it. I make soaps, lip balm, body butter, bath salts. Smelly things. :-)

Oh yeah, April is Autism Awareness month and I am part of a support group here in Morgantown and we have scheduled some events in April. Depending on the turn out at these, we may schedule some others. On April 2nd, we are having a play date at PlayWorks. We are still working out the times and such of the others...if you are interested, just let me know and I will get you the information! We would love to pack these events! I know that we have the Rec center pool for one day! It's going to be exciting!

I think that this is very apt for everyone, including our children:

The splendor of the rose and the whiteness of the lily do not rob the little violet of its scent nor the daisy of its charm. If every tiny flower wanted to be a rose, spring would lose its loveliness. --Therese of Lisieux


FRIDAY, MAY 29, 2009 2:00 PM, CDT

Thank you, thank you, thank you, thank you!!! To all who have been praying for Wesley! Just in the last few weeks, his vocabulary has expanded by 3 times! Now, let's put this into perspective...before it was about 2 words...now it's about 6 words. But that is incredible! Especially when it felt like a brick wall we were up against! I have not idea what prompted this spurt, but I love it! We really were having trouble getting Wesley to mimic or repeat, but it seems like about 2 weeks ago, he suddenly "got it!" I know that I am using lots of exclamation points, but you can't imagine how excited I am. I was cautiously optimistic when it first started, but we are still seeing it 2 weeks later!

Let me give you an example. In a normal speech session, which is 30 minutes, he would usually say very little...if he said anything it was usually "no." Today, he repeated 23 words, 6 phrases and one sentence!!!!!

4 comments:

  1. Thanks for the glimpse into your life. You have my deep admiration for being such a great advocate for your kids!

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  2. Thank you for sharing. The world needs more loving, caring people like Misty and Rich Chaffins.

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  3. Thank you both, Alise and Rick.

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  4. Thanks for including this part in your blog. As I told you, even though I read it at the time, sometimes we do forget just how far Wesley has actually come. Love you Kiddo.

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