Friday, December 31, 2010

Events leading up to Christmas

After we sang to my grandma my mom treated the kids. We were quite proud that brother learned how to do his own bulk candy... oh, the things we are proud of when we are the parents of children with challenges...



We finally got around to putting up our Christmas Tree about two weeks before the holiday. Baby loves to "walk" around. She was helping pull out all the decorations.


I wasn't feeling well this day but, Brother was very excited to make his favorite pinwheel cookies. How could I say no. He was so excited.

Just love this picture.


And this... this is a white elephant gift we received at a party. If you look past Mr. GQ you will see his wife laughing in the background.

This is a "man" bag if I ever saw one. It was made of tighty-whities and a belt. Oh, the laughter that ensued when this creative gift was opened. We all laughed for a good half of an hour while Marc modeled his spiffy man bag. I seriously wish I had more pictures of this... He was having so much fun making everyone laugh!!

The cool thing was it was filled with fun food, like peanuts and ding-dongs...

This must be his I'm-out-with-my-man-bag-on-a-casual-stroll-with-my-iPod pose.

We had to do our gingerbread house tradition.

This year I was smart and used the glue gun to glue the graham crackers together so that my kids could just have fun with the frosting and candy... ingenious... I tell you... absolutely ingenious. It made for a lot less chaos, therefore, more fun :)

Baby got to watch and eat candy and graham crackers .

This next picture I have to preface with a story:

Me: Hun, I'm gonna go out and play in the snow! There's so much and Brother wants to play in it too. Will you come get some pictures of me playing with the kids? The neighbors want us to play in their yard so can you come get some good pictures, please?

Marc: Ya.

I go out skipping with my snow duds into an overnight pounding of 2 foot snow! Seriously, I hadn't seen snow like this since I was a kid. It was so exciting.

Below is the only picture he got out in the snow with me in it...
Yes, that's me.

Above the goat house.

To the right a bit.

Ya, the spec with a blue and gray coat on.

Thanks Marc.

Glad I could document this momentus occasion...


I just showed this post to Marc. He laughed pretty hard.

So did I.

Tuesday, December 28, 2010

massaging, rubbing, rolling, squeezing, swinging, rocking, jumping, coping and a little whining...

No pictures for this one. ( I should get some though so that those of you who need this can get an idea of what we are doing here.)

Fragile X Syndrome brings on many challenges. Many that people around me don't really realize are dealt with on a daily or hourly basis. Most of the things that we deal with are here in the home so not a lot of people understand why I am so overwhelmed to be their mother.

Massaging
is what I do for Baby's legs when she won't stop rocking. She needs some sensory input and massaging her legs helps her regulate and receive sensory input in another way.

I do that on Brother's back when he can't calm down from something that has been very exciting or overwhelming or when he can't stop worrying about how the covers are on his bed.

Also, massaging their hands seems to relieve them. They have a lot of sensitivity in their hands, I guess.

Rubbing
for Baby and Sister are needed to calm. Mostly I rub their back or their hands or cheeks.

Rolling
is a very interesting technique in that you get a heavy blanket or rug and roll your child up in it... ya, I know, unless you have a child with autism or FXS this is a very strange thing to use to "help" children.

You lay them in the blanket/rug at the end and roll them up in it while putting pressure up and down their body as you roll them. Sister is the one that LOVES this. Brother likes to have his turn at it too, just because. I use this for Sister when she is aggressive or over-stimulated. (And, frankly, that is often.)

Squeezing
is usually what I do when in a public area, ie. store, mall, family party, movie theaters. I take Sister in my arms in a big bear hug and squeeze her comfortably tight for a minute or two until her muscles relax a bit. This gives her sensory input and helps her be aware of where she is in her space. Baby also enjoys a modified version of this where she likes to barry her head in my neck or shoulder and sqeeze me with her fingers.

Swinging
is something that can be done several ways. I used to do this a lot with Brother but not now. Now it is with Sister a lot and sometimes with Baby.

We have set up a therapy room in the basement where we have set up a hammock hanging from the ceiling that wraps her up like a ball and swing and twist her when she is being agressive or has been over-stimulated. I also do this while out an about by taking her into my arms like a little seated swing and swing her like a pendulum. This is quite wearing when they get bigger but, well worth the results.

I remember, too, with Brother, we (His Occupational Therapist) and I would wrap him in stretchy nylon material and swing him. This gives the sensory input for vestibular and surroundings.

Rocking
is what we do if the swinging doesn't work for Sister. A rocking horse works wonders.

Jumping
comes at a time when strong sensory input is needed. Trampolines are great for this. We are looking to get a mini trampoline for our therapy room in the basement.

Coping
is something that I hope Sister will learn to be able to do one day on her own so that she can attend mainstream classes. Mainstream classes aren't going to have a swing, trampoline, or bouncy ball to help her transition or calm down from over-stimulation.

I am also hoping that I can continue to cope doing this all day long. I get extremely overwhelmed and physically and emotionally tired...

which leads to...

Whining.
I won't do much of it.

Just a little.

Waaaaaaaa ahhhh aaaaah aaaaaaaaaahhhhhhh waaaaaaaaaaaaaa!!!

Monday, December 27, 2010

Please enjoy the music while you are waiting...

OK, so there's no music but, here are a few cute things my kids have been doing lately that I need to document before I forget. I will get to all my other updates soon. (I hope)

Baby has started walking along furniture!!

This is great! She is 14 months now and not too awfully far behind in development.

She can climb up our entire flight of stairs. We're still working on the down part.

She can wakl straight forward with a push-toy but cries when she hits a road block because she still hasn't figured out how to back up or turn around—but, hey we are counting our blessings here.

She is now cutting her fourth tooth and the three that are in all the way make me laugh every day. Is it OK to laugh at how our children look? Ya, it is. As long as they don't remember you laughing at them... tee hee! We are still trying to get pictures of her teeth...

Sister has been quite a challenge lately. But, I am focusing on the cute or the good for this post so... ummmm... just kidding, here it is.

Sister talks so well now when she is not hyper-aroused and to hear her play with her dolls and horses really gives me a tickle. So cute. Tonight at her grandma Lynne's house she had an old doll that was, at one time, her dad's and she had heard someone mention that fact. So later we were witnessing her taking the doll's hand and patting her head and then she would say, "Dad, stop doing that right now!" Apparently the clown doll that is over 40 years old looks remarkably like her father... ha ha ha ha!!! She has quite an imagination... we will leave it at that.

One night after going to sing Christmas Carols to great grandma Vivian (I will tell you more about this in the next few paragraphs) grandma Judy wanted to treat the kids to some candy for going to sing to great grandma Vivian and her friends. Sister was instantly Grandpa James' best friend when she realized how great he was at pushing the car-shaped shopping cart...



Brother has had a real connection, as of late, with his great grandma Vivian. It all started a week ago or so when we, as a family, went to sing Christmas Carols to her at the place she is living. The whole interaction brought tears to my eyes.

He started off sitting within range of her, but hiding his face. The entire time he has his arm dangling over the arm of the couch he was sitting in. Great grandma was in her wheel chair next to him. Slowly, both great grandma and Brother began to reach for eachother's hands.

Both Brother and Sister were very intrigued with great grandma but watching Brother with her was most intriguing to me.



It was so sweet. Watch them...
video



And I think that is when the "bond" happened.

On Christmas Eve we all went again as a family to sing to great grandma and her friends. This time, instead of being nervous about going, Brother was quite excited. He ran right in and was excited to join in the singing.

We were only there a short time.

When we got into the car Brother said, "Mom, great grandma needs to watch us open presents. She won't be there." (talking about our tradition of opening sibling gifts on Christmas Eve at my parent's house)

I was a little surprised by his comment and said, "Well, we could record it and then make a DVD for her."

He then said, in such sweet and worried intonation, "We should do Christmas morning too."

I told him that was a great idea and then he said, "Momma, I gave her a hug and told her 'Merry Christmas.' That's what I did momma."

All of us!

Grandpa James, Great Grandma Vivian, and Uncle Jeff


Many more posts to come—I have to finish blogging 2010 before it is over... that only gives me 5 days to get in weeks worth of posts!

Sunday, December 19, 2010

No Bridge!

So here it is. The post you have all been waiting for 11 months to hear.

I am done mourning them.

Them?

13 and 18.

And, finally, even Bryan.

Why?

Because I have to be.

Why?

Because I have three children and a husband who need me whole.

Not in pieces, crying over losing them to their parents.

How did I do it?

How did I finally move forward?

I don't really know how to explain it.

I just know that God lifted my burdens and he is carrying them for me.

It happened a while ago.

They were here to hang out for a whole day and during that time I had realized they are different now. They don't need me anymore. Not in the mother way they needed me before. Now I am their friend and confidant.

I am their aunt.

Thank you, if you were one of the dozens of people who told me that we made a difference in their lives, that we gave them a chance at a new life, that we guided them through the tough times of their teenage years, that we saved them and that one day they would see that and be happy.

Thank you.

And I am sorry.

Sorry, if at the time, I told you it would never be that way, that it all hurts too much, that it isn't fair, that I don't understand why Heavenly Father is asking this of me.

I think I even may have been angry with some of you who tried to console me in my time of sorrow.

A few weeks ago I was talking about how I have healed and moved forward to some friends. One of the friends was telling me how Marc and I were a bridge for those kids to get to where they are now.

... I didn't want to be a bridge. I didn't take these kids on so that I could become a bridge. I love them. I wanted them to be my children. I wanted to be their mom. Not a bridge.

No bridge!

... tears in my eyes.

But, with God's help I am now proud to say I was a good bridge. And I might add I was a weak bridge at times, but through the passing of time He added strength to my bridge. I would like to say I was a strong bridge for them most of the time. Sometimes the storms were so hard on me that I was weakened again but, then I prayed for help and he added more beams and cables. My bridge may look a little muddled with all the additional supports but, dang it, I earned those supports.

So, here I am.

A proud bridge.

One who carried a lot of weight.

One who let 3 children leave imprints.

One who broke down a few times but, was strong enough in the framework to be built back up again.

May we all be willing to be the bridges in peoples lives. That we may be there to help some one get to their final, or temporary destination.

So in celebration of me being able to finally move forward. I will no longer name them 13 and 18 from when they were still mine.

Kelsey (18)and J.R. (13).

So now I move forward as a bridge, strengthened, to continue to lead our 3 children on the right path. Now I just have to hope my bridge is straight... (smile)

P.S.
I still love them all with all my heart. I miss them. But I am OK with the situation now. And yes, sometimes my heart still aches to be their mom.

18 turned 19

So, 18 is now 19.

It was interesting to go to her house and bring her a gift instead of the usual begging to have the present before her birthday kind of thing. It was a drop-off-the-gift-say-hello-and-run kind of deal and that was weird.

I gave her a necklace and a shirt.

I don't think she liked the shirt, but the necklace was a hit.

She got a ton of jewelery and clothes when she was visiting her dad last month so I don't think they were needed items but, I had bought them 10 months ago and had been saving them for her all this time... so, she got more clothes and jewelery.

I am going to give 18 a name...

in the next post...

which will be above...

so if you don't read all these posts in order then this post will seem obsolete...

oh well...

Light Date


This was one of the shortest and most needed dates in recent weeks. That's why I call it the "light" date... get it? Anyway, we went and saw the lights at a local city library. I posted this picture of me because it makes  me laugh. I was trying to be all cute while freezing cold posing next to a beautifully lighted tree. Marc wasn't too happy about taking the picture because he was so cold. When I saw the end product I had to laugh that he only got the trunk of the tree and me leaning forward to ask if he has taken the picture yet. (sigh)

Thursday, December 16, 2010

Here's the SURPRISE

Well, Gary (Marc's dad) kept this secret for about 2 months. I don't know how he held it in so long. It was all concocted along with Bryan's help.

But...
2 days ago the mission home called Bryan's mom's house to make sure that there was going to be someone at the airport to greet him...

Wait...

We thought he was coming home January 6th. He's coming home in 2 days?!!

Well, I am still amazed that they were able to keep the secret until 2 days before he came home.

Bryan is home after serving a full-time mission for the Church of Jesus Christ of Latter-day Saints in Chile!

Welcome Home Bryan!

Here is a clip of some of the "surprise" waiting for us under the Christmas tree.
video
 I know, I know, my laugh is loud... pppfth... ignore it
...

if you can...

Wednesday, December 15, 2010

Kids with Snow, Kids with Cameras and Kids with Teeth

 My kids LOVE to play in the snow once they get used to the idea that it is winter (which is usually by the 3rd real snowfall and when I have their snow boots out).

Brother had learned from his lunch buddy at school how to roll the snow to make his own snowman. (So sweet! I just can't say enough about his sweet new friend from school.) So, while Sister and their cousins and a neighbor friend worked on their snowmen, Brother worked on his... it was going to be a masterpiece.


Sister and LittleB had so much fun dressing their snowGIRL up...

OK, so I helped them... they were still proud and I loved it!

I can't believe that J-man was able to get this snow ball on top. They even made it one higher after this one!

Later that evening, Brother finished his snow-woman and wanted me to come out and take a picture of it. The beads are because she is a princess... (smile)

That same night both Sister and Brother decided that since daddy has a new camera that that means mommy's camera is for them to use... hmmmm... wasn't too sure how I felt about that but they had a good time. Here are a few pics they took.

Sister took this cool one of Baby—bubbles still in the milk
It was so cute because Sister would look at Baby and say "smile! Smile at the camera. Look over here." Just like I do... it was so funny.

This pic is of me just after blowing my nose... hmmm... whatever floats her boat.
... and yes, I washed my hands...
I guess since I was the only adult in the room I became model for their photos. This next one is of me telling Brother that he has "taken enough pictures..." "OK (smile) stop now." "OK, really all done." (smile) (click)
There are actually about 15 of the next picture in various forms. He LOVES to color and he loves to show it off (don't mind the pink sippy cup in  the background with some kind of red goop on it...).


So here is the funny thing about the kid's teeth. Sister lost her first tooth on the same night that Brother lost (we think) his last. They were both so excited! It was funny because 18 came for dinner and she was the one who pulled out Brother's tooth (wish I had a picture of that) and I had the privilege of pulling out Sister's first tooth.

No pictures, sorry.

Anyway, we were very excited about being able to pull Sister's first tooth because when Brother lost his first teeth we never saw them... we think he just swallowed them. He had such low tone in his mouth that he probably didn't even realize it was there. So we were very excited that we actually got to put Sister's tooth in an envelope for the tooth fairy.

Two mornings later I see that Sister's gap in her bottom teeth looked bigger...

I looked closer...

She had lost a second tooth.

The one right next to the other one.

Where was it?

????

I guess she swallowed it...

at least we got the first one.

And last, but not least:
Baby has 3 teeth now. She has 2 on top and 1 on bottom. It is so funny because the gap in the top teeth looks wide enough that the bottom tooth could fit right between... Ha! I have yet to get a picture of her teeth because she really doesn't show them off much.

She loves to chew on peeled apples now.

She also likes cheese, peanut butter and jelly sandwiches and whatever we are eating...

So much to catch up on—watch for (not in any specific order):
-a huge surprise!!!
-18 turns 19
-No Bridge!
-light date
-new camera
-whining
-swinging, massaging, rubbing, rolling, squeezing and coping

Must... catch.. up...

I figure if I tell you what's coming I will have to follow through.

Tuesday, December 7, 2010

I Wish I Owned a Harley

Don't we all?

Here we are as a family at the local Harley shop and tourist center.

We sat on Harley's.

Got warm by the fire place.

Checked out the clothes.

And then went and got some lunch in the restaurant there.

Then we sat on Harley's some more.

It was such a fun family outing!





Brother ran off because he didn't want to ride dad's Harley--He wanted his purple Harley. (smile)
 In this picture I laugh everytime because it looks like I have on a HUGE belt buckle—but it is just the mirror on the bike handles... Yee haw!!

Friday, December 3, 2010

Lunch Buddies and Stairs

My kids go to a public school.

Brother is in 5th grade. He is in a self-contained classroom called UEI or Cluster Unit. He has been in this particular kind of class since Pre-school. So we have 8 years of school and school experiences under our belt.

Sister goes to a different school in our same town in the same type of classroom.

They both ride the same bus even though they go to different schools.

Sister goes to all-day kindergarten because that is how the UEI works.

Sister has "lunch buddies" at school.

This is an awesome thing and a GREAT idea for any public school.

This is how it works at her school:
Each week there is a classroom that helps with lunch (5th graders, I think). The kids who are not helping in the kitchen are assigned to be "lunch buddies." Lunch Buddies are magnificent children who each have a child from the UEI and special ed classes and they help them through the lunch line, sit with them while eating lunch, help them throw everything away, and then go out to recess and play with them.

Awesome!

This was a new thing for me to hear about.

You see, when Brother was younger (1st-3rd grade) his friends from our neighborhood attended school with him. He thought it was so great to see them all at recess. I asked his friends one day if they sat by Brother at lunch and their reply was, "No, because he sits at the UEI table." I was saddened by this comment but didn't do anything about it because I just thought that's how things were.

Well, when I heard about this wonderful concept of integration I had to talk to his teacher about implementing the idea at his school.

Within a week the program was started!!! Brother has an amazing teacher and she really pushed the idea through!

At Brother's school it is a little different that Sister's lunch buddy system. For him it is the student council of the school that rotate through every so often. So Brother gets to know a new person really well by eating lunch with them and hanging out together at recess.

Now, first off, I have to commend Brother's lunch buddy. It just so happens that he is our neighbor. He and Brother don't really play with eachother, but, they know each other. Anyway, this sweet young man is going to be known as Mr. Wonderful! Why? Because he has been a true friend to Brother these last few weeks. He sits with him at lunch and then he takes Brother around with him and his other friends and they play all kinds of different things! One day it was tennis, another it was Battleship and drawing on the classroom chalk board. Yesterday they made snow balls. I tear up just thinking about the amazing acceptance of children. They are so non-judgemental. Brother has come home so happy knowing that he is making other friends. And I am so happy knowing that he is getting more experience with "typical" role models.

My heart is full.

The lunch buddies at Brother's school aren't even required to be with them at recess. But, Mr. Wonderful includes Brother in everything.

I have been really, really lucky with the experiences my children have had in this school district. They really work hard to help the special needs children succeed.

And to those who have been Sister's lunch buddies over the last 3 months... bless you. She is quite picky about who she wants for a lunch buddy and has been very open about not wanting a particular student for one reason or another. I think she likes the boys. I am sad to say that it was reported to my one day, that Sister had kicked her lunch buddy. I was disappointed but giggled under my breath.

"Why did you kick your lunch buddy today?" I asked. "Because I didn't want him." She replied.

We had a good talk and there have been no more reports of kicked buddies.

Here at home Baby has been working hard on her goals. We have been trying to climb stairs independantly because this will teach her the leg positioning and co-ordination needed for standing.

I have slacked.

I am so overwhelmed with all that I need to do for these three kids that sometimes the ones that whine the most (which are the 2 oldest) get all the attention. So I was embarrassed to have to tell Baby's OT on Monday that I had not worked on stairs with her over that last 2 weeks.

But, this week (these last 5 days) Marc and I have been working with her on climbing the stairs. At first she could only last through 3 stairs assisted and then she was completely worn out (low muscle tone is common in FXS kids). The other day I was able to get her to do 7 and 3 of them were independently!!! Yay!!!!

She has started to stand in her crib. That is a big accomplishment.

She babbles a lot more now. We get to hear her little voice as she crawls around the house and explores things.

Everything goes to her mouth. It doesn't matter what it is—it's in her mouth.

She has started the famous Fragile X stuffing. That is where they like to stuff as much food into their mouth as possible and put it in the sides of their cheeks and hold onto it for  a while. I am really hoping to break her of this habit. So far, both Brother and Sister didn't stop even with strong encouragement until they were older—and they still do it now if not reminded.

One of the things that scares me most is a term that is well-known in the autism world—stimming. This a shortened term for self-stimulation. (Side-note: As I was searching for a link to help you understand stimming I read in this particular article that tearing paper is stimming—oh boy—Sister has been doing this constantly for the last month and I just now, learned why.) You may have seen children or even adults with disabilities who rock back and forth and hum or play with their hands. Well, Brother did this somewhat but, quickly grew out of it before age 3. Sister did it more often and we directed her to the rocking horse or rocking chair to try to appropriate the action. Low and behold, Baby is doing it now. Remember when she would rock in her high chair to make it move towards where I was. Well, it has become "stimming." She won't stop unless I completely take her out of the situation. And now she is doing it in her crib when she wakes up and waits for me to get her in the morning. Yesterday, I caught her doing it while playing with some toys. Aaaaahhh! Not good. So now, I am having to constantly drop what I am doing to re-direct her attention else where so we don't start a habit.

It is so interesting to be so grateful and so overwhelmed all at the same time. I am sure all you mom (and dads) feel this way often. What do we do when it gets to be too much?

We pray.

Don't forget to pray.

Now for some pictures
Overstuffing her mouth... She actually looks like someone who should be named "Ellie May" that lives in the backwoods. Tee hee!

Brother and Sister are encouraging Baby to stand up to the couch. It never happened but they still had fun trying to help her.

Baby showing her fantastic pointer finger skills (a step in development) while showing me her new toy.

Watching Baby play with the toy that they can't wait to get their hands on...

She makes some of the funniest faces—and this is one we get a lot.

This one is one my favorites. (and yes that is cheese in the corners of her mouth)

Thursday, December 2, 2010

The night before Thanksgiving and riding a bull

So this was the year to have all of my family to my house for Thanksgiving. I guess no one got the memo... so it was my parents and some of our friends.

Since I was going to have so many people over (I mean that sarcastically--there were seven coming to join us) I figured I should clean the house.

Now, I know that it is typical, with kids, to have a house that looks, like, well, you have kids. But with Sister living in my house it is quite an understatement to say my home looks like I have kids. She is like a whirlwind going from one room to the next making messes that cover the floors, the beds, the tables, the counter, the couches and the chairs. I am not exaggerating... she loves cards, paper, books, anything that can cover a large surface with enough expertise in spreading. Well, I have found out recently that she is no longer satisfied with only those things. She now likes to express herself artistically. Refer to this post for background on her art skills and the table.

Now, I told her not to draw on the table anymore. I haven't seen her do it for a while and thought that my message had sunk in.

Then, late, late the night before Thanksgiving I discovered that she was at least "hiding" her artwork.

I moved the table to mop and this is what I found.
That is blue pen carved into my linoleum — and, yes, she did get the table too. Drat!


And, crazy as it is I got NO pictures of Thanksgiving! Not my dutch oven turkey, not the amazing spread of food on my countertop.

But, I did get a small (sneaky) clip of us playing "Hilarium." One of the funniest games I have ever played.

Enjoy this clip of me trying to "ride a bull."
video
I think my brother is playing Star Wars. (He and his wife came later for dessert.)
And stop looking at my stomach... I forgot to suck in, alright! I was focusing on the acting... (smile)

Happy Belated Thanksgiving everyone!

I would write my whole list of thankfuls but, frankly, I just don't have time and I think that I express my thankfulness often on this blog...

Wednesday, December 1, 2010

From the mouths if babes...

This video has been forwarded to me several times. I just kept ignoring it, until this morning I finally watched it. I couldn't take my eyes off of this little girl. She is amazing. I don't care if she memorized it from a Veggie Tales movie or from hearing it so often from her parents. Either way this young girl was inspired by this story. I am posting it here because it is so inspiring.

Maybe I enjoy seeing children speak at the pulpit for church gatherings because I hope that one day my children will be brave enough to speak in church. I see little children get up and bear their testimonies and give talks in sacrament and I get choked up for two reasons: 1) They are so pure and sweet, 2) I long for my children to be able to move past their anxieties and hyper-arousal enough to be able to say what is in their heart one day.

It should be enough that I get to hear and feel the spiritual experiences that they have but, they are so beautiful and inspiring that I wish others could feel of what they know. I'll never forget when Brother was very sick and very scared because he was so sick. He said with great intensity in his eyes, "Mom, my Father will help me." He was referring to Heavenly Father. How sweet those moments are when I know, without a doubt that he has such a strong connection to heaven. Sister and Baby too. It is scary to me, sometimes, to think that heaven is always in my home...

Enjoy this sweet little clip (if you haven't already seen it):


The story of Jonah from Corinth Baptist Church on Vimeo.

And if this inspired you check out what I will be watching this coming weekend. It will be something to get your Christmas Season started...