Sunday, January 15, 2017

The Normal Normal

When Baby was a baby, Sister loved to hold her and talk to her, but as they both grew up Baby was becoming less social because of her extreme sensory needs and lack of any speech and Sister was becoming more aggressive and challenging. Baby was scared of Sister's outbursts and therefore would avoid her most of the time. When she did want to be with Sister it wasn't good for Sister because Baby would squeeze, pinch and kiss her because of her sensory needs and this would throw Sister into her aggressive fits.

Over Christmas break I noticed that Sister was letting Baby hang out with her in her room as they colored, cut paper, looked at books and played with legos side-by-side.

I couldn't stop sneaking to the side of the open door to watch them and revel in the moments of them acting like sisters. Of course there were arguments and sometimes someone ran out of the room crying and tattling, but the good of it was definitely outweighing the bad.

Then there was Brother all through Christmas break who would do nothing but sit downstairs in the TV room in "his" chair watching Netflix and listening to Shania Twain simultaneously. The only time he came out of that stupor was to do his dishes, eat dinner or search the fridge for another apple.

I remember when our niece, Kelsey, and nephews, Bryan and Junior, lived with us that Brother always annoyed them because he wanted to be in their business all the time. He would sneak in to listen to conversations with friends, try to sit on their lap or turn up his music and wait for them to come sing or dance with him.

Brother would also attach himself to perfect strangers sometimes by grabbing onto their legs or trying to sit on their lap and he would always say, "hi" which was one of the very few words he would actually say.

I remember back then trying to teach Brother not interrupt his "siblings" all the time, give them some space and some time with their friends and I remember how we would try to impress upon him the importance of knowing a stranger from a friend so he would stop hugging or climbing on the laps of people we'd never met.

I never would have thought that his craving for social interaction would deteriorate to him wasting his time away in a basement with the TV and iPod.

At least that's what Marc and I see at home.

However, at school, he is a very social and very interactive teenager who is loved by many.

I am not sure why he is one way at home and another way at school. I can only guess that his social interactions throughout the school day are actually quite overstimulating for him and when he's home he just wants that to be his safe place where he feels no pressure and can just zone out and feel less anxiety.

So, I'm trying to be OK with the girls fighting, tattling and arguing because I am not sure how long they will continue to buddy around with each other. Maybe Baby will become like Brother and not allow social interaction unless completely on her own terms. Maybe Sister will let her obsessive behavior get in the way of having friends.

I don't know.

I do know that I miss the social little guy Brother was when he was little and wish I would have enjoyed that more than try to change it.

I do know that because of that, I will try to not discourage Baby and Sister's interactions because of the constant arguments and meltdowns, because I would rather that their relationship was fleeting rather than not at all.

I do continue to hope that one day Brother will be as social with us at home as he is with those at school.

These pictures were taken back in 2010 and they are still some of the dearest to my heart.

I also continue to hope that Sister and Baby will always have each other for their benefit, but also, slightly for my selfish reason of wanting to watch a "normal" relationship between siblings.

But, what on earth, makes me think anything will ever be "normal" in our family?


So, as I've said before and have to continue to remind myself and tell others,

"We have just found a different normal."

It's how I console myself in times of wanting/needing normalcy, but also how I have often accept Our Life.

Sunday, December 11, 2016

Steering the Car with The Horn

Oh my goodness, I love hearing all the funny things our kids say... like when Sister says "oytmeel" instead of oatmeal, "Syria" instead of Sierra, or her ever famous "meemember" instead of remember. Sadly, though, I don't remember them all, but I remember laughing about them.

Luckily, I've taken notes of a few of the funny things our kids have said over the last while.

Sister often tells huge stories and I truly think I just may take one of her "stories" and turn it into a book one day, she's very creative... an by creative, I mean, she can weave some amazingly imaginative stretches of truth.

Sister told us one day that a boy in her class was getting fired because he had a cigarette hanging in his mouth. Both Marc and I looked at her very perplexed knowing that she weaves a fantastic tale we weren't sure where this one was coming from--they usually have some kind of context behind them, but this was not the norm. Noticing our puzzled and "I don't think I believe you" actions she quickly piped in, "Wait, wait! Oh ya, I forgot! He actually got in trouble because of child labor laws" long pause from all of us,  "My teacher was so mad."

While taking a little road trip we saw a Delorian pass us on the freeway and she got so excited. (If you don't know what that car is, it's from the movie 'Back to the Future' and we had just recently watched an edited version... lots of swear words... anyway) She said it was from that movie and it was going so fast that she could see its tracks. (In the movie the car leaves flaming tracks when it travels in time.) She kept calling it the time machine car and excitedly exclaimed, "I'm so excited to see it again! I haven't seen it for so long!" All that while bouncing up and down in her seat like a Mexican jumping bean.

One day after the kids were home from school and I was editing photos I was talking to my sister, Jessie on phone and Baby was standing by me asking for a snack and she was talking so clearly and politely. This is quite a big deal now-a-days to hear her speaking so much and so well. It used to just be a few inaudible words and some grunts, cries and pokes. Jessie, all too familiar with her regular communications skills, commented about her talking so much and I said, "I know it's been so fun to hear her talk and its been so exciting and rewarding to hear her talk so much." Baby heard me say this and commented quietly behind me, "and no batteries." Both Jessie and I were not only laughing at that one, but just the fact that she would even come up with that idea was so amazing!

One morning Baby was admiring the snow and happily declared, "It's Christmas."

We were explaining to the kids that Christmas was on a Sunday this year and discussing whether we should open presents before or after church that day. After some calm discussion, which in and of itself was amazing to Marc and me, Sister looked perplexed and asked, "Is it a leap year or somethin'? How'd they put Christmas on a Sunday this year?"

So, during the week of Thanksgiving I took photos for my niece and nephew's Dad, girlfriend, Aviva, and her family who had come in from California and we all had such a great time together that I invited them all to have an early Thanksgiving dinner with us. It was such a great experience and Brother just completely adored Aviva. He was asking how Aviva was related to him and we were explaining that technically she isn't related because she is like Kelsey and Bryan's step-mom. On the way home Brother kept talking about Aviva and how nice she was. The next morning as I was getting him up for school he was talking again about Aviva and then says, "I guess I have a step aunt." Everyone Brother loves is family to him!

While staying at my mom's house for a little bit while I did a photo shoot Sister had been having fun watching me outside. It was muddy in the field we were in and without a though she ran into Grandma's house with her muddy shoes and Grandma said, "Whoa! Whoa! You have mud on your shoes!" Avery looked at Grandma with a smile and replied, "Oh, no, Grandma, I don't mind," this interaction was repeated three times before Sister realized that it was Grandma who minded...

So many funny things that we get to hear on a daily basis.

So many times we laugh at how sweet and cute their words are.

And often we are trying to correct our children so they know how to be appropriate, kind, NOT blunt, and honest.

When you have children with special needs (for us specifically, Fragile X Syndrome) you are constantly trying to help them learn the "right" way to do things so they can be as "normal" as possible.

It's funny that parents often times tell their kids that they don't need to try to be like anyone else, that it's OK to be unique, to be themselves, and let their light shine. Yet, here we are parenting Special Needs and teaching them almost the opposite it seems.

It's a lot like a bit of advice I once heard from a dear friend:

"Yelling at your children is like steering the car with the horn." 

Bless your heart Becky, it's one of the best bits of advice I've ever heard and I've shared it often.

I'm not saying I'm yelling at my kids all the time, but I think that even trying to make your kids be something they are not is almost the same as yelling.

I've never been able to steer any of my cars with the horn.

I've never gotten anywhere by "making" my kids do things while I'm using the wrong tools.

The best we can do, special needs or not, is to love them, be the person we hope they will be and keep Christ in our lives daily.

I hope that we are encouraging them to be themselves, but also trying to help them be happy, productive members of society.

I mean, I guess I'd rather be a steering wheel than the horn. I think my kids will like me better that way. The sound of the horn gets annoying and eventually you learn to tune it out anyway.

Now for a few cute pictures to look at:

Baby loves to make brownies and every time I have oil or eggs out she asks, "Brownies?" and then we have to make them.

Had to take a picture of this because our outing to the Church Christmas Party was a complete and total success... well, that is if you exclude the part where Baby grabbed my face, put my nose to hers and grunted, "Don't ever sing that again," after I performed a solo of  Angels We Have Heard On High. Tee hee hee hee!

The best gift Brother got for his 17th birthday! The BB8 pillow!

Monday, November 28, 2016


Am I blessed or cursed?

That's actually not something I think of often, if at all, but I got thinking about it.

I'm a generally happy person, but is it because I have a happy life that makes me happy or is it because I choose to be happy?

The world, the overall general population, would say I have every right to be miserable.

In the world's perspective I have everything of importance working against me.

I'm not beautiful, rich, famous, skinny, or successful.

I don't have a big home, a fancy car, new furniture or appliances or even redecorate/remodel my home every other year or so.

I'm a minority... a religious minority. Because I am a Mormon (member of the Church of Jesus Christ of Latter-day Saints) I am judged by many for my beliefs, my actions, my choices, and my outward appearance.

All three of our children have an intellectual disability that brings our entire family into a world of minority as not everyone understands nor faces what we do every day.

So why in the world am I happy?

It's my perspective.

My choice.

My desire.

I don't want to be miserable so I am not going to dwell on the challenges I have, but instead let my face feel the sun and choose the bright side of life.

Our kids have so much anxiety that getting them out of the house to do things seems nearly impossible at times.

Marc and I could stay in our house all the time with them where they feel safe and we slowly waste away in our depression because we can't get out and do the things we love to do.

Or we can thank heavens for the people in our life who love to care for our children and invite them to spend time with our kids while Marc and I seek out adventure and excitement.

going out

meet-up for lunch

out with friends

camping, photo op and time alone weekend (St. George/Zion National Park)

learning a new skill together with a friend

trying to get in the date selfie for getting home
traditional weekend date

new adventures together with friends (Moab)

(Grand Staircase Escalante)

lone hikes for exercise and rehabilitation

on a date to the temple

lunch-time meet-up

We could continue to leave our kids at home to fall into a stupor of consistency and predictability.

Or we can prepare them as much as we can to go on an adventure as a family to give them experiences and broaden their minds.

A shot from my shoot at Brother's Homecoming while he teases his teacher

Taking the kids to Taco Bell for a Saturday lunch

Having Brother take a Ceramics class at school to stretch his comfortability

Getting the kids to play on Snapchat (sometimes a changing face can be quite scary)

Encouraging school field trips like this one to make a meal for the family

Prompting Brother to say "yes" when asked to a school dance

Getting Brother to the Dentist, then laughing because he said, "Well hello, pretty boy," to the dental assistant
(laugh inserted here)

Encouraging a day at Grandma's even when anxiety is high

We could give up after Sister bites, hits, screams and threatens us for two days before a scheduled adventure.

Or we could plug through, tolerating the screams and rants until she gets in the car and realized that she can do this and remembers she actually likes adventures. (We even get to celebrate little victories like her seeing a Rest Stop sign and requesting that we stop at that Rest Stop so she can use the bathroom.)

My effort to thwart the meltdown on the drive to Capitol Reef (sometimes pictures distract)

Brother had a few major panic attacks during our hike but we were able to work past them and make it to our destination.
Hickman's Natural Bridge

The kids LOVED this trip to Capitol Reef and was so successful that we think this may be the beginning of many more adventures outside of our hometown!

We can wallow in the misery of having to change the diapers of our 7-year-old everyday, all day.

Or we can be grateful that she is starting to go potty on the toilet at school and, at least, give it a try somewhere.

We can dwell on the fact that Marc and I will never have grand children, sons/daughters-in-law, posterity or family reunions held in our names.

Or we can love everyone around us and hope that we can enjoy their grandchildren alongside our children in service or visits.

I can be mad at people for passing judgement on me because of my religious choices.

Or I can love them as the children of God they are and just know that they may not mean the harm I feel they do at the moment.

I can be offended by people's off-handed, snide, thoughtless or slight remarks about our children, their circumstances and our situation.

Or I can realize that not every one has walked in my shoes and they may truly not realize what they just said was very rude or degrading and be willing to teach them, be an example for them or just be strong enough to ignore them.

I can be worried all the time about whether or not our children have friends, are liked by their peers, or get invited to gatherings.

Or I can pray for the understanding and love of those who are involved with our children and the influence they have on their lives.

I could write a blog that just continually bashed the thoughtlessness and immaturity of people we come across.

Or I could write a blog to inspire those who don't understand Fragile X Syndrome or any other special need so that they can become more educated and understanding.

I could write a blog about every thing that is wrong or hard about Our Life and never give hope or dreams of a happy ending in our situation.

Or I could write a blog that is honest about the downs, but also focuses on the life lessons learned, the trials that bind, the light at the end of the tunnel or the humor in almost every life occurrence.

My perspective is what makes my life what it is.

I do have my times of wallowing in the misery of our trials and tribulations, but I refuse to do it for long or to let it keep me or my family down.

If there is a cow in the middle of the road I can yell and curse that there is something blocking my progression on the road and question God why he does not want to see me progress and move forward and then give up because I think he doesn't love me enough to allow me to move forward, or I can laugh about how funny it is to see a cow in the middle of the road, try honking my horn or get out and herd it out of the way or realize that there is another road that can take me to the same destination and then proceed on down my way while laughing about the seemingly funny moment that just occurred.


You can change it.

Trust me.