Monday, March 2, 2015

Autism and Legos should be partners...

Or should I say, Fragile X and LEGOS should be partners?

(I guess that depends on the audience who is reading this.)

So I thought it was just my daughter who was obsessed with LEGOS because of her Fragile X Syndrome and Autistic Spectrum Disorder causing things like Obsessive Compulsive Behavior or perseveration or attention to details to keep her life in order, but I was wrong.

All kids love LEGOS.

Yes, I know that.

But, almost any parent on earth who has a child who has some Autism-related struggle knows all about LEGOS and the obsession they have created for our children.

I can't tell you exactly what it is.

They just are drawn to LEGOS.

Brother, who doesn't have as many Autistic tendencies as Sister and Baby do, has never really been into LEGOS so much.

I don't really like LEGOS because my feet and my vacuum have a unhappy relationship with them. I have learned to shuffle while in Sister's room though.

When we started having Sister see a therapist I was worried she wouldn't do well...

until he showed her his collection of LEGOS!

It was instant admiration and friendship.

Ben (her therapist) has been able to connect with her because of the LEGOS he has.

One of the coolest things he's done for her (and others like her) is utilized LEGOS to help them identify the feelings they are feeling.

I was so impressed by this idea, kicked myself for not thinking of it myself, and then asked him if I could put it up on my blog so that others had access to it!

Voila!

He said yes and sent me the files!

Happy to Angry faces in transition

Happy to scared faces in transition


Please just make sure, if you use them, to keep his name on them.

I just think it is a great idea and I am so glad that he is willing to share his creativity.

That's my UP today—another useful tool in our home for our kids.

Sunday, March 1, 2015

Love on the Fourth

The fourth day with no Marc.

Sigh.

It's not just because I miss his help with the kids, and the house, and the garbage, and the errands and dishes.

I miss him.

It makes me realize how thankful I am that, even through our rough times, I truly love him.

I know. You come here to read about life struggles, pursuits of happiness, mishaps and comical moments.

Not a for a romance novel.

I'll spare you the details, but I do love my husband.




On paper, we should never have gotten married—both the oldest, both opinionated and headstrong, both lack confidence in our abilities and we both get our feelings hurt easily.

But, when you really love someone, really, really love someone... you tromp through the tough times, scream at the bad times, and fall apart in between.

Then you add special needs children to the mix and "Voila!" you have complete and utter chaos and a marriage that is doomed for failure.

At least so the statistics say.

Statistics are haunting.

You never want to read a statistic that is predominantly about you and your situation.

Statistics are nice for decisions on where to live, what kind of car to drive, where to go to school.

I don't want a statistic hanging over my head saying that my marriage will never make it.

Honestly, there have been times I thought we would be the statistic.

Honestly, I might even feel like that again in the future.

But, I know, and I believe with all my heart that if I can have the faith and hope to get through the tough roads of Our Life that Heavenly Father will continue to bless us with love for each other.

I know that families can be together forever.

I know that not all marriages work out and there are reasons to be apart, but I, for my own reasons and needs am so thankful that we have put so much work into this marriage.

It's not perfect, but I love him!

He loves me.

We make it work.

But here are a few tips to keep things strong:
Have a weekly date night.
Have things in common you like to do, even if it is just shopping together or walking together.
Have your own individual hobbies and likes and make sure to make and take time to do them.
Talk to each other about your love for your hobbies and likes and get excited with each other about them.
Respect each other (find out how each defines respect or feels respected and make sure to do that)
Stay faithful.
Don't wander (either with your eyes or your heart).
Plan with each other.
Don't let your kids take place of your marriage (make those work together... a healthy marriage can help your kids).
Have faith in each other and in God.
Help each other.
Serve each other.
Serve others.
Laugh together about yourselves, your marriage, your life, your choices.
Laugh together about other people, others marriages and other's choices (It funny, just accept it.)

And that's just my little bit of unsolicited advice for today.

All because I miss my husband.

Romantic isn't it?

Maybe.

But, my UP for today isn't that I love my husband... I mean that is an UP, but not exactly a surprise...

So my UP is that I survived church successfully with the kids on my own!

Hallelujah!

I was even debating up until 30 minutes before we needed to leave whether I wanted to even go to church or not.

It would have been so much easier not to go.

But I went.

I went for routine.

I went for continuity.

I went to be uplifted.

And I was.

Especially during the last hour when we were able to kick off our Youth Missionary Month. It is just a mock missionary experience for the youth. They receive mock mission calls and everything. It's such a great experience for the youth ages 12-18.

For Brother's mock mission this month he was called to Helsinki, Finland! He was so excited!!


Another big UP was being able to sit and watch half of a movie with all three kids tonight before bed. Ya, I know, half a movie! Pretty epic, right?!

Day 60 of 365 Days of UP

Saturday, February 28, 2015

The Zone

I enjoyed my day today.

It started off early with a dance class this morning, which was great! I didn't do great, but the class was great!

I keep dozing off while I am writing this.

I must be tired.

But let me tell you the biggest up of my day...

before...

I  z
     o
       n
         e
             out...
                 

Hmm, it might be too late. I seriously dozed off during that.

I can't even remember the UP I was going to tell you about.

Now that's a downer.

Hold on... oh ya!!

I got a picture schedule cut and laminated today and was even able  to put it to good use.

Another UP was going to my parents' today for my mom's homemade pizza.

After her cooking was done she sat down and watched a movie with us AND play songs for Baby!


Day 59 of 365 Days of Up

Friday, February 27, 2015

The End

I really am on an UP note today.

I just am.

No big fantastical reason.

I am just high on life and ready for more to come.

Why?

I just got my laminator today!

Yup!

Everyone should be excited about a laminator!

Well, OK, so it really isn't that exciting to most, but for me this is one of the signs that I am moving forward and taking on the new and ever-changing challenges of raising 3 children with Fragile X Syndrome.

I'm going to get back on doing the picture schedules again. I am even going to put together some more social stories. Laminating them at home, I think, will be less of a struggle to motivate myself to get things done and put them together.

Also, today was the last run of "Pinkalicious." The run ending isn't exactly an UP, but being a part of the show for the last month, making new friends, learning more about theater and acting, and being encouraged by director, Jerry Elison (one the best known directors in this area) has been an amazing and treasured experience.

At this morning's performance I even got put on the spot and embarrassed by some high school friends when they brought up a skit I had done back in the day. Needless to say, it was funny, yet awkward and they knew it was... stinkers.

Here's the image she caught of me doing my Michael Jackson move... OK, I know it doesn't look like MJ at all, but given the circumstances ...


It made it very official to watch them take the set down tonight:




Oh! And I got another YouTube video done today.

Here it is:

Little Actress

I've been studying up on some theater stuff and lost track of time so I'm not going to get deep tonight.

But, I will tell you my most memorable up for today, the director of the play I am in said to me tonight (with a big smile on his face), "Rachael, you are quite the little actress."

That meant the world to me coming from him.

Sorry so short, but now you know why I've been studying theater stuff all night.

I think I have built up the confidence to try out for another play.

More details of today, tomorrow.


Day 57 of 365 Days of Up

Thursday, February 26, 2015

Slap in The Face

I forget what my life is like sometimes.

Really.

I do.

And then I get a slap-in-the-face reminder.

I sat down today after all the kids were home from school and started on some design work I needed to have ready by tomorrow.

All the kids seemed fairly entertained... at least they weren't crying, bothering me, screaming or running out of the house.

Apparently, Brother was just feeding Ranger 3 bags of dog treats and wheeling around the bottom rack of the dishwasher on the kitchen floor after he had emptied it.

No big deal...

Just a possible clogged dog and probable rack replacement.

Same old, same old...

Ugh!

Anyway, I guess it just hasn't been the bestest day ever.

Now there were good things. I'll get to those.

For right now, I want to laugh at all that was wrong with the day so that I don't pile on today's stress to tomorrow's stresses.

Today was the perfect day for a sitcom.

For instance, when Marc got home from work he could sense my level of irritableness and, when asked, I told him about the recent happenings. During this I was making dinner and getting the kitchen cleaned up a bit. Marc was wiping down counters while I was trying to open a can of tomato sauce.

You would have thought that between 3 different can openers in the drawer that one of them would surely work.

To my chagrin, none of them fulfilled the complete task and I was resided to using a butter knife to pry open the can lid. It popped open, but it popped a little faster than I planned and it ended up splattering little spots of tomato sauce all over the counter Marc was cleaning, his shirt, my shirt, my face and the floor.

I stood there for a moment and processed what had just happened and unemotionally said to Marc, "It's just been one of those days." I walked away and Marc just calmly kept cleaning the counter. He had caught on from earlier that today was not the day to either try to be funny or sympathetic. This days was the don't-say-anything-because-no-matter-what-it-is-will-be-wrong day.

Smart man.

It was fun, though, to have friends over for dinner and conversation. Hopefully, while they were here, they didn't notice any tomato splatters I had missed.

Sister had a bit of a melt down while our friends were here. I wasn't surprised because of other things that had occurred earlier that day. I was trying to hug and talk her through it. I wasn't really getting her calmed down even though I tried.

At times like this when Sister falls apart I am able to realize the difference Ranger has made in Our Life. Ranger walked in the room while Sister was falling apart and she immediately went to him, talk to him, pet him and hugged him and she, within 5 minutes, was fine.

It truly is miraculous what a dog can do for children with special needs.

So, all in all, it was a decent day despite the few Brother mishaps.

But the UP I want to mention was having the opportunity to see my cousin's wife and their daughter on the front row at the play this morning!


Day 56 of 365 Days of Up

Wednesday, February 25, 2015

Seeing more than I expected!

So back to last night, since I promised to add on...

I've been prepping our kids for 3 weeks now that Monday, February 23rd would be the day they would come see mommy in the play. I made sure to arrange for McKenna and Lindsey to come with Marc to help with the kids.

One adult for each kid.

I think the preparation helped because they made it through the whole thing!


I was even prepared with popcorn and drinks when they got there!

I guess Baby had a little case of ants in her pants, but for the most part they were good.

I even got to hear Brother holler out during my main scene, "Oh, Mother!" It made me night and almost made me break. I had even warned my fellow cast members to listen for him. Turns out they didn't hear him—I guess it's a parent thing.

Anyway, I was really excited, because afterward they were even able to handle coming to say "hi" to me and get a picture with me. All except Brother, he had a bit of a rough time and refused to be in the group shot.




One of the other big UPs of my night was having some special friends show up and surprise me! It was especially awesome because one of those friends is a very special friend to Brother from our old neighborhood. She was able to get Brother out of his funk and he was excited to see her and talk to her a little bit.

I am always truly humbled by the youth in Brother's life and how they really care about him. I love it! Thank you M for being you and being being sweet to Brother no matter his reaction!

After M and her family had left, Brother hid back in the corner again.

It didn't last long though, because Felesha, my friend from the cast, was able to connect with Brother and got him to come out of his shell. I was impressed at her time and effort to befriend him and make him feel comfortable.

I often take the time to explain Our Life, Fragile X and all that these two things combined can induce, but it is always nice to see that what I  have taught is actually put into action.

The other thing that is cute about Felesha is that she thinks my hubby is a hottie and it just makes me giggle to see her act like a school girl. Marc took a selfie with her and I think her smile says it all:

I was so happy too when Baby let me take a selfie with her:
This is the face Baby makes for most of her pictures now-a-days... reference below to her recent pic with Marc

I was also really happy to see Yaya at the play!


Oh, and I was so happy to see her parents too!

Earlier in the day, a couple ours before I left for the play I had a bit of a down moment. It started off happy because I was so excited that I was taking the time to redesign my header for this blog:

Then Marc came home while I was finishing up and after a few minutes he called down and asked, "Rachael, have you seen the Christus?"

I had to glue the hand on once because I knocked something over that was next to it and it nicked it just right. I thought that one of the kids had bumped it and broken it again. It is very special because my parents gave it to us years ago for Christmas and it is one of those really nice ones that stands about 14 inches tall. It's a centerpiece in our home.

I wasn't expecting to see this:

I about died when I saw it. I knew immediately it was Sister and I thought for sure it was permanent marker. I took a picture because I just had to. I was amazed she would silently do this while I thought all was well.

I told her to find the marker she had used and was so relieved that it was a washable one and proceeded to get the right cleaner and a dish cloth to begin removing the graffiti.

As I did so, I began to chuckle to myself as I noticed that she had given him a heart, some eyebrows and his crown on top.

And then, it became my up.

Our daughter knows enough about Christ to know that he is our king, he has a heart full of love and his eyes are the window to his soul (so of course you have to frame them with good eyebrows.)

That was yesterday's biggest lesson.

Today, was fun and rough and good.

The play is always fun:

Wearing these humongous butterfly wings always bring me UP

My fellow butterfly, Paige!

I had fun pretending to be a windshield butterfly...

And of course I had to do a selfie!
I got these pictures from my sister this morning from when they came to the play last Friday:



And there was a other stuff that happened today that made me reflect on what I have ahead of me in my parenting journey and all that I have in front of me in the here and now.

I feel inadequate, under-quallified, and overwhelmed.

I have to say though, that today, my UPs certainly outweighed my downs.

Besides, how could I possible be sad having gotten another YouTube video finally put together AND it was from Christmas so it brought TONS of happy Christmas memories!

Merry Christmas!