Hairy Post

Really, nothing exciting. I just wanted to document one of the few times Baby let me do her hair a little fancier than the usual. She was happy coloring so I took advantage of the situation and did and angel braid on her hair. I had to take a picture because it was such a great event (smile).

When I was little my Grandma Vivian taught me how to crochet. I remembered I love it, but pretty much all I could do was crochet a long line. But I loved it and I made myself a lot of hair bows and necklaces and bracelets and whatever else you could turn a long looped strand of yarn into.

A few weeks back we had an activity in Relief Society and we learned how to crochet some bracelets. I sat there with the other ladies learning all over again, but I couldn't help but think of my Grandma Vivian and what she had taught me.

Now I'm not really sure if the reason why I enjoyed that night so much was because I felt like I was connecting with my Grandma Vivian on the other side by thinking of her while I expounded on what I had learned from her OR if it was just plain fun! Probably a bit of both for me.

Anyway, I sort of feel like I did when I was a kid in the fact that I have learned one thing but I will make due with what I know until I get comfortable enough to move onto something else. So, I took the pattern I learned for the bracelet and made a headband.

See?

Winners

I haven't written anything this week because I have so many things on my mind and just can't seem to formulate into one post.

So this post, regardless of how I hoped to bring all my thoughts to one spot, is going to be a jumble of thoughts, feelings and small celebrations.

Remember when I posted about Brother's successful track meet, but told you I would let you know more about the one that didn't go so well at a later time. Well, I think it is later enough that I can post without crying about it.

I've mentioned before the hold anxiety has on Brother's life and the track meet that day was one of those days. Marc and I showed up so proud and excited to take pictures of our track star. But, it was not what we had hoped. Something, somehow had set him off earlier at school just before the track meet and he was falling apart that we were there. He didn't want us there. I figured it was just the typical anxiety that soon subsides as the event occurs.

I was wrong.

I found that out quickly when his coach asked me to help keep the kids in order for the long jump. Brother had been yelling at me from his place in line the whole time I was standing there and when it was his turn to go and he was right next to me he began pushing me and shoving me with some teenage force.

It wasn't pretty.

I kept a smile on my face, trying to talk to him and calm him down. I felt like the entire crowd on the bleachers was staring at me getting pushed around and yelled at by the typically sweet and funny teenager they have all come to love. I am sure they weren't all staring, but I am sure those who were watching were wondering what was happening.

The parents of the other special needs kids, I am sure, felt and understood my pain that I was hiding.

I finally gave up the fight to try to ease his anxiety and gave the list to another parent and walked away to watch him fall apart next to the long jump pit. I stayed because I knew, he really did want us there, yet really didn't all at the same time.

I didn't cry out loud but I cried in my mind.

Don't worry, though, I got over it because there have been so many great things that have happened since then.

Like the fact that we have started a new medication for him to help with his anxiety. I think that day was a revelation to me that he really needed to get some relief for his terribly controlling and overbearing anxiety.

It's working!

Amazingly!

I am so excited to see the MANY fears he had start to take a back seat.

Now, he still has anxiety but it is not as debilitating as it was a few weeks back.

He even asked to have a friend over today! That is a big deal, just in case you were wondering.

It has led him to the successful completion of 2 different hikes with the youth of our neighborhood in preparation for Trek. I am so happy for him. The youth where we live are astounding and never cease to serve our kids. I loved hearing the one story, in particular, about the first hike when they were going down a steep spot and a few of the girls were helping him down. I love to hear stuff like that.

And then, the other day, Amanda sent me this video she got on her phone:




I loved it for a few reasons, 1) My sister, Kirsten and my niece, Kelsey used to do this and Brother would sit along side them trying to do it--so it brought back sweet memories and 2) because Amanda's sweet daughter doesn't mind at all having Brother play alongside her.

Oh, and random photo of the day, This morning Brother looked like David Tennant of Dr. Who this morning before heading out to school:

He did not want his picture taken... this is the best I could get on my phone... but he still looks awfully handsome!

As I wrap up this post I wanted to share with you a post from 3 years ago. I think that track has been a big part of the successes and lessons learned here in our family. I ran across this old post as I was searching for some other things on the blog. I had TOTALLY forgotten all about this and I am, now, so grateful that I wrote it all down. It made me cry. Again.

WEDNESDAY, MAY 5, 2010

Running the "Race"

I know, you are waiting to hear about my Florida trip and to see all the pictures. But, before I get to that I have to post a memorable moment.

Yesterday was Brother's Hershey Track meet. Remember last year? 

(Insert from 2013 here, this photo is from 2009 and is one of my favorites of him)

The track meet was yesterday, Tuesday  and I only heard about it on Monday because of our vacation. It started at 9:30am. I had made an Occupational Therapy appointment for Baby at 10:30am. I was hoping I would be able to make it anyway. Monday night my mom and dad came for dinner so that they could see all our pictures from Florida. I mentioned in passing that Brother's Hershey Track meet was the next morning if they wanted to come.

At 10am on Tuesday morning my mom called me from the track wondering if I was there. I explained to her my situation and told her that I would get there as soon as I could.

I didn't make it to his track meet. I was sad, but, hoped that his Nana being there would suffice. I am happy and humbled to say, she did more than that.

My mom tells the story kind of like this, "I was looking everywhere for him and then I heard, 'Nana! Nana!' When I walked up to him on the bleachers he acted shy and embarrassed. It was so cold out there. His skinny little body was so frozen and he had two jackets on to keep him warm. I went and got an old, dirty blanket that was in the back of the van to keep him and his friends warm. They all snuggled in it. It was so cute. Brother is so skinny and so sweet. Then he was going to run his [100 meter] race. I stayed along the side of the track on the grass to cheer him on. He started running, his big jacket and hood over his face. Then a little more than half way through the race he realized no one was around him running anymore and he just stopped. They had all already crossed the finish line..."

At this point I am teary eyed thinking of my vulnerable little boy so unassuming as to what was really happening. Wondering if anyone was laughing at him or pointing at him.

My heart sank.

I felt for him.

Then my mom continues, "I kept cheering him on. 'Come on, [Brother], let's go. Let's finish the race. Run!' He just stood there looking around. So I started running along the side of the track with him to encourage him to finish the race."

And she did.

My mom ran alongside him and he finished the race.

Last.

Dead last.

But, proud.

Completely oblivious to anyone's tears as he crossed the finish line alone.

Am I proud?

You bet I am.

Am I thankful my mom was there for him?

For me?

You bet I am.

My family, and I have a unique priviledge of watching my children run the "race" day after day.

They run hard.

And I know, in the end, they will reach the finish line...

winners!

"I'm Sailing!"

We had so much fun today down at the rocky beach of Utah Lake... it doesn't even seem right to call it a beach, but...

Our friends, Chris and Jaclyn, took us out to the lake to enjoy their sailboat, a picnic lunch and just a great time with friends.

I was pretty worried about today's outing because I didn't know how the kids would do with staying out of the water and staying where I could see them. But! It turned out GREAT! We all had a blast. Marc was able to take time to go out with all 3 of the kids at different times and I just got to have fun behind my camera. 

It was such a beautiful day. 

It may have been a little too beautiful because there was actually not much wind, let alone a breeze, to catch the sails on the boat. So their short jaunts out became pretty long just waiting for the slight drifts of air to catch.

Our kids had so much throwing rocks into the water, wading in the shallow shore line, playing with Chris and Jaclyn's kids and eating cheese puffs to their hearts' content.

I loved today.

I just did.

Sunshine, happy kids, sound of water on the rocks, views of the snowcapped mountains across the lake and seeing my kids go on a sailboat for the first time ever.

I actually didn't ever go out on the boat, but I really didn't mind. I was content on the shore with my camera in hand. Maybe sometime I'll edit a few of these and even get some printed up to remind us of what a great day with friends that it was. It was definitely a great start to my Mother's Day weekend.

Brother and Baby walked the shore line together most of the time.

 

Smile!

Baby had so much fun climbing around on the rocks the entire time she wasn't on the boat, which was most of the time. 

Well, I tried for the group shot... we tried...

Meme (her name on this blog) was such a big helper with the kids, especially Baby. At this point, though, Baby had followed her in too far and decided it was to scary so Meme ended up carrying her to shore. Aw...

Ya, I'm strange... Avengers vintage t-shirt with my big-brimmed sun hat... OK, moving on.
Thanks, Marc, for the picture.

Almost ready to head out!

Hee hee! I just like this picture.

Sister was so interested in the boat but still to nervous to get on the first time.
She did finally get the courage to ride it at the end, and she loved it!

The water was FREEZING, but Baby didn't seem to mind at all...

Brother watching Chris in action.

And they're off!

Baby LOVED being on the boat and wanted to jump right into the water with all the rest of the kids,
Marc had to work hard to keep her ON the boat. No fear, I guess.

Then Chris brought out the sailboard. He and his kids were seeing if they could balance themselves on it...

Hew did it!
(name changed for this blog)

Meme did it!

 Cheese!!

And now Chris' turn to stand!

 

It really was a beautiful day!

And if you want to know why my title is in quotes
it's because it's a line from one of my favorite movies!

Fragile X and Autism Go to Church

It's all about routine.

Don't mess it up.

Don't forget it.

Don't change it.

And do not, I repeat DO NOT do any of that before entering the church building!

Here's how it all went down:

Me: "Marc, it's pretty hot today let's try parking in the shade at the back of the parking lot."

This was a bad idea. A very bad idea.

Sister: "NO!!!! NO!!!!! I hate the shade!!! I like the sun!! This is not the parking lot!!"

Everyone was already getting out of the car, we were a little late and, frankly, I am just tired of Sister always winning.

That was another bad idea.

Never care about who wins, just get used to losing.

Me: "Marc just head in with the other two and I'll get her."

I thought some self-talking or calming techniques would work.

I wish I would have realized the error of my ways before Marc was out of sight and in the church building with the other two kids.

Sister continues to scream, "I hate the shade! I want the sun! I don't like the shade! The shade is stupid!"

She is saying all this while I chase her in zigzags in the parking lot trying to avoid the moving cars, the parked ones and the odd stares of the worried people who thought they were witnessing a kidnapping.

I resort to taking her by the arm and thinking that I would force her to walk in with me even if she was screaming.

However the walking thing was not an option. She hung onto my arm like a monkey baby and I had to buoy up my strength to carry her with one arm across the parking lot to the doors.

I think my "mother adrenaline" kicked in because I wasn't crying, hurting, panting or sweating as I carried my 7-year-old by one arm into the chapel.

I thought for sure if I could get her into the chapel and start her routine again maybe she would be able to forget or forgive that we messed up the parking routine.

I'm sure it was quite a scene as I carried her in and plopped down on the second row that is always saved for us.

I sat relieved that we were in there and all would start well again. I started sweating and breathing heavily now that my adrenaline had subsided and I had to pull out a notebook to fan myself like one of those old Southern ladies and Baptist Church.

Sister was pouting on the floor under the bench in front of us and I was in hopes that she would just stay there and be quiet...

Hope...

A funny thing sometimes.

Baby joined her under the bench for a few minutes and then after a few minutes of solace two little girls popped out from under the front row bench and decided to plop down in the isle.

I thought they would be fine until Sister started to have a meltdown right there in the front row in the middle of the isle.

I reached up, handing Baby to Marc and grabbed Sister to bring her back out into the hall and she went limp again so I was, again, carrying her with one arm while I opened the door to leave.

Sigh.

We walked around the halls for a few minutes.

We walked outside for a few minutes.

I asked if she was ready to stop whining and sit in church and she whimpered an audible "yes."

We quietly re-entered the chapel and as we sat down, Sister's heart began to race as she firmly informed me, "Mom, where's the bread."

The priesthood was passing the sacrament but were now passing the water, which meant that the bread had already been passed.

I whispered to Sister that we would be able to get the sacrament after the meeting, but, hey, that was NOT the routine... I panicked a little until I saw Marc signaling to the young men at the Sacrament Table that we needed the bread. The sweet young man went over to speak with the Bishop to make sure it was OK and then walked down and passed Sister and I the bread.

Tears started to roll down my face. Partly because I was exhausted physically but I had just been deeply touched spiritually. They made sure to get us the water as it had already passed by our row and Sister seemed to be happy about her routine beginning to resurface.

It was testimony meeting.

As soon as I had the chance to get up I stood and said, "If any of you have seen how church started for me today you would know that I want to shout from the rooftops... shout from the rooftops that this church is true, I know it is or I wouldn't be here." I smiled. I really am thankful for my knowledge of the gospel because there is no way I would put myself through all that if it wasn't true.

After closing my testimony I went and sat down and within 2 minutes I was taking both Sister and Joslin out to play with the nursery toys. Thank goodness for the nursery toys. Saved my life that day.

Another life saver was the dear friend who stepped in to tell me she would stay with the girls while I listened to the rest of the sacrament meeting.

Tender mercies.

Oh, and Sister was happy as a clam once she went to class.

Her routine had finally gotten back to normal.

...

Right on Track

A proud mommy just has to share pictures...

This picture is from the track meet that Brother was actually have a bad day at.  I only show you this picture because I wanted you to see the small cheering section that had come over to watch and cheer him and his teammates on. (I'll tell you more about the experiences at this track meet later.)

This is at his last track meet, the 100 meter. He is the one to the left with the purple jacket on. He ran so well that day!

This is him coming in second place! Yay!

I love this picture for so many reasons. One of them, though, is seeing, again, the dedication and love his track coach has for him and how much she wants him to succeed. She is awesome!

He's flying!

He definitely jumps farther than he throws...

We sure love this kid! In fact, Marc and I just came in from talking to two young ladies who stopped by  to visit with us while we sat by the fire. It was neat to hear them say good things about Brother, how funny he is, how much they like him and how they would defend him if anyone ever teased him or made fun of him. And this conversation is after we hear all the great things that went on this morning when he went on a hike with some of the youth and church leaders in our neighborhood. (I'll tell you more about that later too.)

It takes a village...

Sister's Funny!

Sister is always saying funny things.

In fact she says funny things so often I forget what they are exactly, I just remember they are funny.

I have been remembering once in a while to post things in my notebook on my phone so I finally have a few to share with you:

One night when I was trying to be such a good mom and I was in the hallway reading aloud to the kids while they were in their beds. Sister didn't like that I was reading loud enough for everyone to hear and kept getting after me to stop. I cracked up and gave up when she yelled, "Turn down your ears!"

One Saturday morning Sister came into my room to announce she wanted waffles for breakfast and was doing her morning yawn and stretch. I heard something pop and I asked her, "What was that that popped?" She answered, "It was my skeletons."

Last week Sister informed Marc and I that Tuesday was the last day of April. I checked the calendar and informed her that she was right. She slumped her shoulders and head, stuck out her bottom lip and pronounced, "Oh, I'm gonna miss April."

You know, as a mother, when your are in the bathroom that is the best time for your kids to tell you things... important things like, "Mom! There's a lizard in the house!" From the seated position I exclaim through the door, "What do you mean a lizard? In the house?" Sister had just gone out to get the mail so I wondered if maybe she saw one out there and was confused about where the lizard was. So I, again, asked her where the lizard was and she, again, told me it was here in the house. I then asked, "Can you come show me?" The bathroom door creaked open and I could see her little eyes peeking through with a concerned emotion lingering on her face. When I looked to see what she had in her hands I saw that it was a Geico Advertisement... I had to take a picture:

She loves to play jokes!

A few weeks ago when we were all ready for Spring and it still hadn't sprung, Sister informed me, "Mom, it's going to be cold tomorrow and my nose is not warm enough. Last Wednesday my nose was cold and I want it to be warmer. My nose is just not strong enough yet. When it is strong with it stay warm? Maybe if I had a patch to get it warmer."

Ah yes! She has some funny insights!

She also has some antics that make me laugh too. Like, on the last Thursday Daniel and the family were here, she was having fun playing with her cousins. She was also having fun getting out one of Grandma Judy's games and was lining up all the cards and playing pieces. It was quite a mess so I helped her clean it up and told her, "no more." A while later I was in the kitchen and I kept hearing something but couldn't figure out where it was coming from. I got talking to my sister and forgot about it for a bit. After Kirsten left I could hear the sound again so I finally peeked around behind the island and I saw this:

She had been trying to sneak the game out to the playhouse that I told her she couldn't play with. I am surprised at her ability to stay behind the counter and hide for at least 20 minutes hoping I would leave so she could run out the back door... ha! ha!

She keeps us laughing!

Grand Stair Case

There are so many "stairs" we take in our lives.

The easy up and down in the house ones.

The back porch ones.

But, in Utah state, their are GRAND ones.

Marc, for over a month, had been planning a backpack trip to the Grand Stair Case Escalante National Monument with Brother and our nephew, Bryan.

Bryan was all excited and rearing to go, but Brother on the other hand, was, well, anxious.

I've told you about Brother before and how his anxieties and fears can try so hard to keep him from doing anything new. So we have been preparing him ever since Marc brought up the idea. There were days that Brother was excited enough to mention that he was going backpacking to family or friends and there were other days where he would randomly yell out, "I'M NOT GOING!!!"

So began Brother's slow, steady climb to accepting the challenge to go on a backpack trip with his dad and cousin.

As much as we tried to keep him on the slow stairway to his first ever backpack trip, it regretfully became one of the steepest staircases I have ever witnessed just the day before leaving.

He was completely and utterly in tears and a pile of nerves and fear on the floor.

We strongly contemplated not sending him. It is so hard to tell when we are pushing him past his anxiety or pushing him past his limits. We were at a loss as to what to do. So, I did what any parent of Brother would do... I sent a desperate text to his teacher at night excusing myself for sending a "teacher" text during her "mommy" time at home and asked her if Brother had talked about this particular trip at all to her in a positive light (he shares more with his teacher sometimes than he does with us). She replied, first telling me that she is always a teacher and then let me know that Brother had indeed told her that he was going camping with his dad with a big smile on his face.

I knew right then, that we were dealing with anxiety and that, it would be tough, but he would do it.

Backpacking in. Two nights camping out with the boys. Searching for petroglyphs and Indian ruins.

And guess what! When it came time to hop in the car Thursday afternoon, he got right in without a problem or a whine!

Not only did he get in the car with success, but the entire trip was a success!

Brother LOVED it! He absolutely LOVED it! And he did fantastic! Marc was so happy. He had such a great time with his son and his nephew.

He also took some awesome pictures! Here are a bunch for you to see.

I think he had this smile on his face the entire time! And I have to say, that the Fragile X low muscle tone didn't seem to slow him down from packing his own pack! (And Marc packed it as light as he could for him).

Some of the views they saw, including the dwellings in the mountainside pictured in the bottom two pictures.

Their campsite and backpacking food setup. Brother LOVED the Mountain House stew and that is saying something!

It's a beautiful area down there with the river, greenery and the redrock all surrounded by rocky mountains

Brother was SO excited when they saw the petroglyphs that he wanted to hug them. He couldn't have been happier. He loves learning about ancient indians and this was dream come true.

One of the only pictures of Marc the entire trip. He is such a great dad. It's not everyone who wants to take on the challenge of taking their child with special needs on a backpack trip just to encourage a good father-son relationship. Marc is amazing!

As they were about to leave Bryan spotted the mountainside dwellings. There is one in the top right of this photo.

close-up

This shows what a task it must have been to get home each day...
hope they had a ladder, cause I can see this is not where they placed grand staircase...

 

  More writing on the wall...

My favorite picture of Bryan from the trip.

striped mountainside

Marc got a beautiful shot of this natural arch. Brother named it "The Bridge of Narnia!" Tee hee... man, I love that kid!

Brother took this stick pretty much everywhere with him and enjoyed drawing in the sand with it.

Brother didn't want to cross the river so Bryan would take his pack and Marc would carry him across... aw, wish I would have been there for that one.

Just love this one

Bryan and Brother on the hike out.

Views from the road on the way down

They stopped by the museum there too and Brother was very excited about that too!

So there you have it.

Brothers "staircase" that led him to the Grand Stair Case Escalante National Monument. I think, if he could subside his anxiety, he would tell you that it was worth the steps to get there.