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.

Sunday, May 18, 2014

Glasses!

Well, ladies and gentleman...drum role please....Isaac now has glasses! It only took us two weeks to get them ha. And as expected he will not keep them on. However, he sometimes wears them, so that's good. We are continually trying to help him. It is hard because we do not really know if the prescription is right and there is no sure way he can tell us. Here's to hoping.
He has another appointment in four weeks to see if everything is good. The pediatric eye doctor said there were other options if the glasses don't work, but I'm skeptical about anything else.
Also, they are worried that Isaac may have a tumor behind one of his eyes, but hopefully it is just an effect of him being far sighted and not an actual tumor. I told him he already had a brain scan not too long ago and they didn't said everything looked normal, but I'm sure he will have me do another  one. Joy. At least our insurance pays for those because there is no coverage for glasses or eye doctor visits. Joy.


Well, that's that. I'll keep ya'll updated:)

Old McDonald Had a Farm

I have tried to read Isaac books with animals/animal sounds for awhile now in hopes that it would help his speech. He never really gives me cues that he is learning; one day he will just surprise me.
TODAY was the day! When I was reading an animal book he said,"moo," "neigh," "baa," and his own version of a puppy sound. It was AWESOME to say the least. One proud mama.
On Mother's Day he said, "uh oh," which was the best present I could have ever gotten from my little boy.
I am SOOOO proud of him! He is learning and progressing and I know he will continue to overcome many challenges in his life.

Sunday, May 11, 2014

A Dream, A Reality

I had a dream a while back. It was awful. All around me were wounded people. It was a gory scene. One was in a full body cast on a wheelchair. others had open wounds. No one was whole.
I woke up disturbed, but soon realized this dream was more like a vision where Heavenly Father was trying to tell me something-a few things.
Just as Elder Holland said in General Conference Oct. 2013, if you have a broken leg, you go to the doctor. There is nothing to be ashamed of.
The Good Samaritan-Image from lds.org

What I learned
1) I was suffering from depression and anxiety. I got a priesthood blessing but it was much later that I also got the medical help I needed. Elder Holland suggested that our Heavenly Father would expect us to do both when needed.
2) We are all wounded whether by others, sin, trial, infertility, wayward children, etc. we just can't see it readily. And most hide it. But if we could see it, we would all see what I saw in that dream and would be more willing to help those in more serious need-spiritual.
3) I know that we are surrounded by others to help each other. We need to help each other!Sometimes we need to do that by being a friend, getting to know someone, complimenting, encouraging, etc. This is the stitching up, a band-aid here and there.

For example, I got a band-aid from my mom when visiting me each week.
A bandage from my neighbors helping with kids and just caring about me.
              Jeremy stitched me back together again after we found out Isaac has FXS, special needs.

Well, the truth is we all have special needs.
However, the true healing comes through Christ and the enabling power of the atonement.



"Lord, I believe. Help thou my unbelief."
“Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing,  a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.”

I know that one day we all will be made whole, complete, healed through our Savior, Jesus Christ.