Tuesday, September 25, 2012

Just wondering...

Do you ever worry that the arm of your couch is going to fall off?

Do you have to keep your bathroom doors closed so that your towels don't get wet?

Do you have Ramen on hand for breakfast in the morning?

Do your arms hurt from swinging all day?

Sister has this new "stimming" thing where she flops over backwards on the couch arm. I am thinking we need to go from big leather furniture to mission style benches.

Baby knows how to reach for the towels, turn on the sink water start soaking. If not caught soon enough this ends up being a very wet situation with both her, the bathroom rug and, of course, the towel dripping. (I am, so far, very happy that this is sink water and not toilet water.)

We are trying so very hard to get Brother to gain weight. He is very picky about what he'll eat and sometimes I just feed him whatever it takes to fill his belly. So I finally resorted to buying his favorite "anytime" food and it just so happens that it is now his breakfast of champions...

I know I may look like a monkey...
but my arms are just not made for swinging!

Baby that is! She wants to be swung all day long (sensory thing) and now it isn't good enough to just have her in her hammock, she has to have me hold her by the arms and legs to swing her. I guess it must give her the sensory input in two ways--deep pressure from hanging and the swinging sensation. This is definitely a lot easier with another adult to help me out and she has realized that as any time there is another adult around she grabs both of us and brings us together and says "swing." The one request that she is actually being verbal about instead of just grunting and pointing.

I'm not complaining. I am glad that she at leasts is making a verbal request.

However it is just mortifying that I had to have a monkey picture to illustrate my point....

Ha ha ha ha!

Wednesday, September 19, 2012

Now Serving 3

So, I have told you all about how amazing our neighborhood is to provide respite care for our family, not only for my sanity but for the kids' enjoyment.

If anyone ever tells you that today's youth are selfish, they must know only a select few.

We have the privilege of knowing one of the most unselfish teenagers on the planet. (Young woman really, she graduated high school so I forget she is a teenager sometimes.)


She comes to serve our 3 children quite often. And I do mean often. She has come over on a last second call when I think I am going to fall apart or just have to run to get someone from school and she is there for hours at a time so I can grocery shop, run errands or get stuff done around the house. She even comes with me on some of Baby's therapy outings just to learn more about her, early intervention, and any other knowledge she can wrap her hands around. We have had a lot of good laughs together over what the kids do and say, but we also laugh at how goofy I can be when I am starting to lose my mind. (Thank goodness Lindsey sees the humor in this the way I do so I don't scare her away.)

She wants to work with special needs people. She really has a knack with it too. My kids love her.

I don't know what I would do without her some days.

In fact I had to call her today last second to come be with the girls because Brother's bus broke down and Baby was still taking a nap. Bless her heart, she came right over. While she was here I was telling her how I can't believe that I still don't have a picture of her with the kids and she reminded me of the fun ones she, Brother and Sister took on my computer with PhotoBooth one day.

When I looked at them I had to giggle. She did a yarn braid on one of Brother's horses manes and he has been so proud of that so he made sure to have that in the pictures they took.

Our kids adore her. And if it isn't Friday's Kids, Grandma's or Aunt Jessie's it had better be Lindsey.

Lindsey, I can't thank you enough for all the service hours you have given to our little family, but here is a way to publicly thank you for your efforts and love for our kids.

This one is my favorite.
Brother I am sure made sure that she was holding his horse in the picture and they are all smiles.
Below is a collage of all the images.

Monday, September 17, 2012

My Favorite Children's Book

I can't even really take credit for this post because it really was all done by Sister's friend JJ. I got a text from his mom last night showing me the latest project he had done and it was a 3 page book complete with a back cover.

It made my whole day.

Best Friends Forever
Juju  Sister  JJ

We hold hands

We play and run

The finishing touch of the back cover
He even stapled it together.

I love this book.

I love friends.

I especially love books about friends.


Friday, September 14, 2012

Pictures and Captions

This is the Oqhirr Mountain LDS Temple where my cousin Shambray was married.
Marc was having fun with my iPhone and he did great.
I have a LOT of cousins, so it is rare that Marc and I get to attend any of their weddings,
but this time we had respite for Baby and the other two were at school.

My mom and dad were there too.

Shambray looked so beautiful and so happy.

Shambray's nephew was so cute trying to look like his daddy and wanting to wear his little red tie to match. My uncle Slade could hardly resist giving him some sweet attention.

Here with my cousin's wife, Cami and my sister Kirsten squinting in the sun.

This picture is funny on so many levels!! I mean really. I can't believe I even posted it. Sorry, Kirsten.

Shambray's little niece waiting for pictures to be overwith.

We've been trying to start a tradition of getting a picture of us every time we are on a date.

Shambray and her friends. Kirsten and her were inseparable for years, so many great memories.

Another great shot by Marc

love this picture

We were teasing Shan because she had to keep her sunglasses on so I had to get some sunglasses for the sisters so we could get a "cool" shot!

Thursday, September 13, 2012

An Aspiring Super Mom

Do you like my Super (Wo)Man shirt?

I ALWAYS get comments on it, "Hey Super Mom!" or "Are you Super Woman today?" or "You are super!" And it varies a bit from those, but I get comments every time I where it, nonetheless.

And I ALWAYS respond, "Oh, ppsshh, naw," or "Yep, that's me," or "No way, I just like the shirt."

Well today Baby's developmental specialist commented on my Super shirt, "Well, you must be Super Mom today!"

My reply was, 
"Nope. This is just my motivation."

If you look closely in the picture you can tell that I am laying down on my bed. Yep, here I am blogging in bed.

I'm not sick.

I just don't have any motivation to even sit at my computer today so I am lounging with my laptop trying to motivate myself to, at least, blog about my feelings so I can sort them out visually, find the positive and move on.

I get asked, more often than you might think, who of our 3 children with Fragile X are the highest functioning and whether or not Baby is any better off than Sister and Brother.

My response can vary depending on the day, but, usually I answer that it is Brother. Maybe because he just seems to go with the flow a lot of the time and just doesn't seem as overwhelming as Sister's Autism-like behavior.

When a child with special needs who is involved in an Early Intervention Program turns 3 they have the opportunity to move on to preschool through the district. Before that happens, though, they need to be assessed to see if they even qualify for this Special Preschool.

The past two days were Baby's opportunity to be assessed.

This is my third time going through this district assessment.

Different school district than the other two, but essentially, the same standard procedure of testing. Lots of questions, observing of behavior, watching them play with toys and how they play, labeling objects and pictures, throwing a ball, walking on a line, standing on one foot, puzzles, etc., just a myriad of different tasks that assess where they are in their ability and development.

For Brother his assessment was so foreign and unexpected. He was our first child, so everything was new. I remember just listening to all they had to say about his "global delay" and had no idea what anything they were saying really meant (we did NOT have the Fragile X diagnosis at the time). I just understood that he needed extra help. I remember them worrying about his autistic-like characteristics but, their biggest concerns were that he was so delayed in all areas. Really, it was all a blur. I can't even recall my feelings or reactions to the assessment or the first IEP meeting.

Sister was a different experience. She was delayed, but compensated in so many areas with her ability to understand and communicate through sign language. She, in fact, was doing so well at the time that the only reason she qualified for the district preschool was because she had a diagnosis of Fragile X. (Interesting to look back at that now seeing how much help she needs at this point in time. We went from having to utilize her diagnosis to get her to qualify to having her in a Specialized Autism Unit.)

Then there was my turn with Baby.

I really didn't think much of going to these assessments.

I had done it twice already and guess it just seemed "old hat" or "routine" so I didn't mentally or emotionally prepare for the outcome.

To make a long story short; after a lot of wrestling with Baby to even keep her in the examination rooms, a plethora of questions for me as the parent, numerous forms to fill out, and various tasks to be done by Baby I was finally sitting face to face with the "Bearer of News." (That is what I will call her because my mind is too jumbled to even remember what she really is.)

This, as I said before, was not the first time I had been through an assessment with one of my children, or as I told the "Bearer of News", "This isn't my first rodeo."

I can't remember everything she was telling me. She was delivering the news so tactfully and so thoughtfully, but all I could really focus on was that I needed to make a decision on Baby's classification so that they could put her in the right classroom setting for preschool, but I couldn't even get past the results she was telling me about Baby's testing results.


That was mostly what I could focus on.


Why would I worry about 1%?

It's the kind of milk I drink.

It's the amount of body fat I wish I had.

It's the amount of chances I hope to have my teeth pulled tomorrow at the dentist.

But when you are hoping that your child is anywhere near the 50% average of where all your child's peers are at this age, 1% is not what you want to see. Especially not in several areas.


That percentage wasn't listed in one area, but many.

My sweet little Baby is SIGNIFICANTLY delayed.

I knew it.

Marc knew it.

It's just really hard to see it on paper.

I am so overwhelmed by my life in general right now that having this knowledge on my plate is giving me the epitome of a waitress' nightmare. Complete and utter toppling of the plate being carried.

Or in short.

I think I am going to go crazy.

Three kids with FXS.

All with so much need and attention.

Since Baby's Developmental Specialist was here today she became my sounding board. She understands, not only because of her profession, but because she is a  mom of 2 children of her own with Special Needs. We were relating feelings and stories as Baby was breaking down because, I think, of her past two days of testing and expectations... oh, and lack of sleep for the past week (that may also be why I feel like I am going to go crazy).

Then towards the end of the visit Brother came home off the bus. I went to greet him and he immediately had a complete and total breakdown with included screaming, yelling, kicking and hitting that ended in me picking up my lanky 12-year-old and carrying him downstairs all while flailing just for the protection of Baby who was the innocent bystander of his meltdown (she did have his iPod, but, hey my sanity counts for something too). I still haven't found out what caused his meltdown. Maybe it was because today was his first field trip, maybe some one made fun of him, maybe he just was really that upset to come home an see that Baby had his iPod...

At any rate, I feel better now that I was able to write this all here on my blog.

Maybe someone will learn from it.

Maybe someone will feel better about their own kids after this.

Maybe someone else in the world will learn something new about Fragile X, or maybe someone will have read about Fragile X at all.

So, since, Baby is standing on my bed behind me, pulling me shirt collar, and jumping on my back calling my name "Rachael" begging for some sensory input for the, literally, 100th time today, I will get up from the computer, wearing my Super Shirt with pride knowing that it is not truth that I wear, but hope.

Saturday, September 8, 2012

Apples, Flowers, Movies, Potties, Soccer and Dating

Phew! That was a mouthful.

I have such a conglomeration of things to write about that I am going to just put it all together.

How do you feel about that?

Me, I am not so sure, I will let you know when I get to the end of the post.

Every day after school Brother comes home and picks several apples off our trees in the front yard. These apples trees were definitely a plus to us buying this house and it has proven to be a very fruitful investment indeed... pun intended. Everyone has come to know Brother as having an apple in hand or sitting in an apple tree. These are the last pictures I got of him before we harvested all our apples today. These pictures have a special place in my heart. (smile)

Baby always tries to join in but just can't quite seem to get up there high enough.

Here are the nine bushel of apples that we picked today with the help of our friends Brittany and JJ.

We didn't get our apples sprayed this year, I guess since it was our first time ever having fruit trees,
but we certainly got some beautiful apples out of it even though 3 bushel of them did have worms.
(I'll be doing a lot of slicing and juicing to get around those pesky things, but I do hope it will be worth it.)

I went up the canyon to find some cool spots for photos and
I just had to capture a few of these on my iPhone while Baby was enthused with "petting"
the flowers. It was so cute because she was talking to them and touch them like they were little people.
Brother was having a rough time one afternoon so I thought maybe he just needed some "mommy" time so we put on "Abbott and Castello Meet the Mummy" on Netflix. I laid my head on the pillow and he snuggled up and laid his head on mine and we watched the movie together. It was such a sweet moment that I just had to sneak a picture.

Baby has been watching Signing Time's "Potty Time" video and really enjoys sitting on the potty.
She doesn't do anything except sit, smile, giggle and then flush, but, hey, I'll take what I can get.
And just look how happy she is.
So, I feel guilty, and have felt guilty for years about the fact that I don't put my kids in recreational city sports. I, honestly don't think I can handle one more thing so I guess it is selfish of me, but I did try a gymnastics class for them a few years ago, and although, it was fun and they loved it when they were there, it was also VERY overwhelming for them to have it after a long day at school. And Brother doesn't have a competitive bone in his body so I just let it all fall by the wayside.

Lately, though, I have noticed that Sister is actually quite athletic and has really taken and interest in Juju's and JJ's soccer. So, after talking to Brittany, she convinced me to try letting Sister go just to Juju's practices and trying out soccer to see if she liked it.

I went and watched her first practice. It was actually on the same night as my Grandpa's viewing so I wasn't able to stay for the entire thing but, my eyes welled up with tears of joy and pride as I watched her kick the soccer ball around with the other girls her age. She was so happy to be out there, she was just beaming. I loved watching her try so hard and succeed at following the coaches instructions. The coach was so sweet and so patient with Sister and my heart is so happy that she is allowing Sister to practice with her team. I think Sister has found a new activity to keep her happy.

She's in the middle with the pink shorts.

Practicing dribbling the ball.

One happy soccer girl with her bestest of best friends, Juju.

 I was talking to a friend the other day. She was curious about Fragile X, wondering if maybe her son has it and wanted to know about the testing. As we were talking about that part of it we came to the part of how having a child with special needs really affects your life and your marriage. She sounded shocked when I mentioned the stress that it has put on mine and Marc's marriage. She mentioned how she thought everything seemed so perfect on our blog...

Here is where I had to interject, and where I will take the time to tell you...

This is my blog. The place that I try to keep things positive for not only my readers, but for my mental and emotional stability. I don't like airing all the dirty laundry to the public. I try to be very honest about depression, anxiety and dealing with everyday life here in order to help others who deal with the same and for me to have a sounding board so that I don't go crazy.


That is what this blog is for.

Fragile X Awareness.
Honesty about raising children with special needs.
A mom who struggles with depression and anxiety.
A family who is trying to stay together and be happy together as a family.

Marc and I have really, really rough times in our marriage.

So tough sometimes that it seems hard to move forward.

Our children wear us down until we have nothing left for each other or ourselves.

There are things we do together as a couple that are helping us through these tough times, that I will mention here:

Pray together everyday
Have a knee to knee (eye to eye, not pillow talk) at least once a week
Read scriptures together
Show love to each other often
Date regularly

I love dating my husband. It is our time to be husband and wife and just release any stresses we have about the kids and just have a good time. Every married couple needs to date, regardless of their child situation. It is imperative that we continue to build a relationship and have a reason to get dressed up for each other and look our best for each other. It is so much fun to get all dressed up for my husband.

We, sometimes, are like teenagers when we go out because we are so excited to be out without the kids in tow.

We rode around town one night while the kids were sleeping over at my mom's and we ended up in this spot with a great view. This night was one of our simpler dates, but also one of our funnest! 
On another date we went on Go Karts and Miniature golfing. This was definitely one of those nights I felt like a teenager. I couldn't wipe the smile of my face the whole night, it was so. much. fun.

We did black light miniature golf. I had to get a picture of this because it reminded me of that snail from Never Ending Story... remember that one?

Marc here in the black lights.

OK, so the conglomeration my post was long, various but I feel good about it in the end... (smile)

Thursday, September 6, 2012

Fond Memories

Finally I am taking time to blog again.

I have so much to write about, but the first thing I want to catch up on is my Grandpa's funeral.

Words, I am not sure, will be able to explain all the feelings I felt that day, but I will try my best.

I knew that the church building would be packed with family and friends.

I, however, was not prepared for the memories and the sweet feelings that packed the 2-hour long funeral services.

I was worried that I would be full of regret that I had not visited with him enough in his final years and that I would not be able to listen to all the sweet memories of him that I was not a part of.

I worried for nothing.

I listened to my aunts and uncle portray and relate stories of my Grandpa's heartaches, successes, mistakes, funny antics, and some down-right off the wall and hilarious experiences.

Mostly, though, I realized through the talks that my Grandpa Fred left a great legacy that lives on through all of his children and grandchildren. I did miss out on some of the visits I could have been part of but I, for certain, have not missed out on being part of a family full of tradition, love and service.

I enjoyed being reminded of his amazing sense of humor, his love for his kids, his love for his wife, his desire to help others and his dedication to family traditions.

I treasured learning about some of his experiences of heartache and loss, disappointment and disapproval, but, most of all, more of the stories about his love for others.

I cried a lot during the service, not because I was sad. Actually, I really wasn't sad at all. I was shedding tears because of the strong feeling of pride and family that I felt there. I watched as my mom sang with all her brothers and sisters (13 altogether) and realized that my Grandpa's dedication to family had held strong in his children. They have definitely had their ups and downs as a family, but no matter what happened in the past, they stood united at his funeral putting the past behind them and the traditions ahead of their own downfalls. It was powerful to watch 13 siblings stand in front of his casket and before their grieving mother to pay tribute to all he stood for as a husband, father and grandfather... fond memories. It put the words of the song my mom wrote so many years ago in a new light that I had never really witnessed before.

My fond memories of living home
And all the country roads I used to roam
I'll always remember living there
'Cause there's so many things that we've all shared

They are indeed fond memories.

I am so thankful to be part of such a huge family that are all part of such beautiful memories.

My mom sang to her mom with a few of her sisters

My grandma with her hair all done up for the occasion

They took my Grandpa to the gravesite in style in an antique, horse-drawn carriage 
my mom and dad by the carriage

It was so patriotic to see his casket draped in the flag and the soldiers soluting.
It was amazing to see the honor involved in the funeral services for a Veteran.

My mom was crying as I was removing her flower to place on his casket.

I hugged my mom because it is hard for both of us to say goodbye.

my mom and her sister placing their corsages on the casket

It was a beautiful site to see 14 flowers lining the top of his casket