Sunday, June 15, 2014

Survivors And Respite



Jeremy took his Deacons on a week-long fifty mile hike. It was quite the trip, but everyone made it...including me and the kids! This trip went much better than the Mexico trip because A) I had Autumn to help me the whole week B) I had school to keep me busy and give me a break C) I'm on Prozac! ha ha
I am so grateful Autumn came down. I am especially grateful for any respite. From this camping trip, out of the kindness of their hearts, several ward members pitched in to give us a gift card to a Outback Steakhouse. The night we had respite for Isaac, my sweet neighbor watched Amelia, and Jeremy and I went on a date. A real date-ya know, without the kids, alone, you get the picture. It's been awhile, so it was extra fun:)

So way to go survivors and respite volunteers!

Making Pizza





This was priceless. Issac loves to hit things and so this was perfect ha ha! One day he will be a professional drummer....or maybe a wrestler...hee

Happy Father's Day, Jer!


 Isaac had so much fun at the park with Daddy. He couldn't stop smiling. In fact, he drooled he was laughing so hard. Daddy swings him A LOT higher than Mommy;)



                            HAPPY FATHER'S DAY!!!!!





 Daddy took off work early the other day so that we could go to This is The Place Heritage Park. It was lots of work, but lots of fun:)





Timothy Green kind of day

Today was a Timothy Green kind of day. Discouraged about where life is going, Jeremy and I had a conversation on the way home from our in-laws.


(I once told Jeremy he has to give me another kid or a dog sometime soon. ;)

I found a cute female Siberian Husky online for $500. So we decided to get it. Why not! It is so cute and cuddly! Jeremy was all for it.
"It can be my lap dog!" he said.
"Yeah, and it can run around in the back of your new pick-up truck!" we laughed.
"Call them up. let's get it!"

"Yeah, and we will need a fenced yard. Well, we have to take out more student loans now that you don't get FAFSA anymore, let's just go li
ve in the house we want for 800 or more with three bedrooms and two bathrooms!" I said.
Yeah! And a wood shop, and a blacksmith shop, trees, and a spot for my bees..." Jeremy rattled off.

"Why not! We think too hard about everything and then we do nothing."
he continued.
"Yeah, like getting that little three bedroom down the street with a yard." I said.
"Let's not think so hard, let's just do it! Let's just have another kid..." He said.


Then we did think-about what really is important, about what we have now. About reality.
And then we returned home in our minivan with two sleeping kids in the back and walked into our humble home.



Meeting Kate

I met Kate on Saturday morning. I was at Megan's shower. Kate is Megan's friend from her Freshman year at college. I had never met her before, but I will never forget her.

I'm  not sure how we got talking about this, but somehow it came out that she has a sister with special needs and I have a son with special needs. So we talked. And talked. About lots of things, actually. It's times like this that you know you meet certain people at certain times in your life for a reason.

One of my biggest things with Amelia and Isaac is how is Amelia going to do as a sibling? Taking care of him, embarrassment, jealousy......

It was nice to talk to a sibling of a special needs child. It wasn't just a story, it was face-to-face interaction. It was honest.

She told me that her sister is so sweet and loving. They love her. She also told me that she didn't fully understand the situation until she got older. Kate realized early on that she may be the one that takes care of her sister as her parents age. She also had to talk to her husband about this before they got married.

There is also something that brings fear inside as she anticipates having her first child, "Is this genetic? Will I have a child with special needs, too?"

She said it is heartbreaking to see times when her sister is made fun of. I dread that for both of my children, but especially Isaac.

I loved a story she told me of when her little sister met another girl with special needs. She looked at the other girl, cocked her head, then just went up to her and gave her a hug. They both knew that they were different and therefore the same. She doesn't usually go up to people and hug them, so the family knew there was a special connection there.

I then told her of my experiences with having so many around with FXS. I told her the story of when I broke the news to friends and family that Isaac has FXS and when my nephew got so excited that he had another boy in the family like him:)

Overall, it was a very neat experience I will never forget. Another experience of connecting with another person that understands. There are many out there:)

Tuesday, June 10, 2014

SFL 240 And the Special Needs Panel

Special Needs Panel Discussion Thoughts

I have been looking forward to the disabilities section in my parent and child guidance class since I first began. However, as the day approached I found out that the parent of the autistic child would not be attending. I was bummed. The other woman had a child with only a physical disability, not a cognitive disability.

I may have even been prideful, especially when my husband called out as I left to class, maybe you can teach THEM something and we laughed thinking yeah, what can I learn?

When I got to class I was nothing but surprised. First, I was surprised at the overwhelming anxiety I had over it. Everyone in that classroom knew that I have a child with special needs, FXS to be specific. I just felt like they were all thinking about that, especially when they talked about divorce rates being high, depression, grief, etc. I didn’t want anyone to look at me, because (except for the divorce part) I felt like I had a sign on my forehead and a flashing light saying “Hey, look! This is an open book about me!”

When people know things about me I feel vulnerable. I feel that they will look down on me, see me as less, talk about me, feel bad for me, be disappointed, or expose my deepest fears and failures. Obviously, I’ve changed, but it’s still there. I had a few experience in the past that taught me this way of thinking, unfortunately. (Not from my parents, thankfully!)

Anyway, I had to pray to overcome this, even though all I wanted to do was run out of the room and forget about this whole ordeal. But I knew I had to stay. I knew it would be good for me, even more so than for all the other people in the class.
So I stayed. I connected with the mothers. I felt their pain and joy. I understood. I could put myself in each situation. I’d been there. I’ve thought of the things they had: missions, retirement with a cruising buddy, etc.
I ended up crying at one point pretty good. There was no use keeping it back anymore. It was when one of the surprise panel members talked about her child that is in a wheelchair, he is three and still needs to be fed, he can’t hear hardly anything, and he can’t talk. She had three children before and one after this son.

Afterwards I thanked the two women and said hi to each of their sons. I explained that I have a child with FXS. I asked how the one woman had courage enough to have another child after her special needs son came along and how she does it with five kids! Whew. Long story short they had heard about the Parade of Pumpkins, one knew my sister, Rachael, and it was a good talk. McKade even had a crush on Rachael’s daughter at Kids Who Count. Ha, so funny. I wish we could go to Kids Who Count. Sigh….anyway.

Dr. Nelson asked me to come back on the panel. I said I would be happy to but give me more time so that I’m not sobbing the whole way through. He said it was okay to cryJ And then I said I’d bring my sister along with me. I don’t know when that will be, but I think it will be especially beneficial to his class to see one closer to their age, one who has taken the class, etc. Plus, not many understand FXS so it will be another avenue to get things out, advocate, even talk about the Parade of Pumpkins!:)


I also found in me an even deeper desire to do a minor in communication disorders or ASL. I would love it. Anyway, when all was said and done I walked away elated. I had friends that understood. We could empathize, not just sympathize! Amazing. I have many different support groups and access to others, but this was different, especially to see that all special needs and disabilities have the same feelings, grieving cycles, etc.


And this? It's a picture. Random. Just thought I'd break up all that text. Whew. Totally worth it, right? HAHAHA

Monday, June 2, 2014

SIBLINGS


There is a new sibling page on the National Fragile X site. I was so excited to see it! I even shared it on Facebook even thought not many of my other friends would care that much. Ha. Sometimes I just gotta shout to the world when I am happy!:) Because I'm happy, clap along if you feel like happiness is the truth, hey, hey, hey

Happy

Happy

Happy 

Happy

Huh...wha? Oh, yeah....













I have struggled to deal with how to treat and teach and understand Amelia as a sibling to Isaac. She is not a carrier or anything. It helped me understand. That's what I needed. I hope that understanding and the knowledge I'm continually gaining on child-rearing will help and lead her in the right direction. This is my hope. And I hope that she will watch over him and be his friend and protector. I hope that she will not feel too burdened, embarrassed, hopeless, or guilty.

Hope and Doctrine

My classes at BYU are different because we are able to combine religion and secular knowledge. That is why I feel that my major in human development/family studies here is so great. I never thought I would go to BYU, but tah dah!
Sometimes disabilities/special needs gets brought up for various reasons.

To make a long story short this is what I have to say to my professor:

DON'T. YOU. DARE TAKE AWAY MY HOPE.

It may have come across to me differently than everyone else, seeing that I am the only one in the class with a child with FXS BUT I knew it was coming so I braced myself. Anyway...

There is too much that we do not know about life before and life after. We know what we need to know, not all we want to know. Here are some questions I have about children with disabilities: (I'll do some more studying of course, but I'm venting...)

Were they predestined to be in the bodies that they are in?
Why did they receive these bodies? Since Jeremy and I are the ones that made Isaac's physical body, what does that say....
I always hear that those with special needs have a straight ticket to the Celestial Kingdom, but my question is how do we determine how severe the need is that this is so? Is there some magic line? I believe, regardless, all people should be reared and taught in the most optimal way.
Is it bad to have InVetro? Do I not have enough faith?
Was I silly to have my own children on "faith?"

I could go on. There are a lot of things I don't know and a lot of questions about special needs I may not ever know in this life.

However,
This is what I do know.

Isaac is my son. Amelia is my daughter. I love them equally. They bring such immense joy into my life and the lives of others. All I need to worry about right now is the basic principles of the gospel. I keep praying. I keep reading the scriptures. I keep enduring.

And ya know? Enduring isn't always that bad. In fact, sometimes I just thank God that this life isn't over yet because it is so wonderful. I feel at any moment it might just slip away, and then my heart is filled with gratitude all over again.

Alike or Different

Each child is different and special in their own way. That's why it is weird when you suddenly realize that because your child has FXS he is actually a lot like a ton of others. Not that Isaac isn't individual, don't get me wrong; but there are things he does that are a part of him I love. Yet, I see other kids with FXS and think, "Oh my goodness! It's like I'm watching Isaac!" Now I know what my sister means when she says Isaac reminds her of her son. At first I just told her I don't see any resemblance. Now I understand.

The first time I really noticed this was while I was watching a video a mom posted of her little boy with FXS. He was doing all the hand flapping, absent minded walking, and so forth that Isaac does. It was weird! You would think I would know to expect this, but it is still weird. I imagine those who have children with down syndrome feel similar because they also have similar physical characteristics. It just fakes me out.