Thursday, December 15, 2011

Two and a Move

Baby starts crying that kind of cry that I remember so vividly coming from Brother and from Sister at this age.


It's like there is some kind of "on" switch for my kids at this age that says, "over-stimulation and hyper-arousal set in now."

I sat consoling Baby for almost an hour just waiting out her inconsolable rage and frustration, tears and screaming, writhing and rolling, aimlessly wandering and falling on the floor.

She was sound asleep 15 minutes prior to the fall-apart.

I remember when Brother would do this, it would freak me out. I had NO idea what was going on. Sometimes his rage would go on for hours through the night. It was as if he were having a horrific nightmare that he couldn't completely wake up from. We called them "night terrors." It became the norm to rarely get a good night's sleep once he was almost 2 years old. I remember when Kelsey and Bryan came to live with us these "night terrors" had just started. Kelsey, being the sweet, patient and motherly girl that she was made her the best candidate to share a room with Brother. I was always amazed at how she mostly slept through these "terrors" of Brother's and sometimes would be up trying to soothe him. There were a few times I thought I should take him to the Emergency Room because of his inconsolable freak-outs in the middle of the night—I had no idea what in the world was causing such a young child to have these, almost nightly, melt-downs. We did not have the diagnosis of Fragile X at the time so there was no explanation or reasoning for this behavior that I could understand.

By the time Sister was two, we had the diagnosis for both her and Brother of Fragile X Syndrome. I had learned about hyper-arousal, over-stimulation, and the affects of ADHD. So when Sister started these "night terrors" I felt a little more patient and understanding because I knew partly what was causing her to wake in these fits. But, when these fits turned into her ramming her head into the walls, throwing herself against the cupboards and furniture, I was now having to worry for her safety an mine as she would lash out at me in her fits at times.

I had been used to sleepless nights when we found out we were having another baby so the thought of being up at night didn't bother me so much as being up trying to feed the baby while the other one was up in a screaming fit putting herself in harm's way.

I found out there was a medicine that could help Sister sleep at night and for Brother too. I was so relieved to know that I would have some kind of rest.

There were still wakings at night but nothing like I had been dealing with.

So tonight when Baby woke in a "night terror" fashion that was leaning towards harmful behavior I started to panic but quickly regained myself and remembered that I know why this is happening. I wasn't completely in the dark as I was with Brother and I had seen the extreme side of it with Sister. I knew that I just had to remain calm and soothe Baby the best I could until she could gain composure.

I understand why she had a hard time tonight. I just hadn't thought about it being that age where it set in with the other two.

Sister had a concert with the mainstream first graders today (post, video and pics coming soon for that). She was absolutely amazing and you wouldn't have known for even a second that she has Fragile X. She sang, did the actions, and was right on beat and on queue. I was so proud of her I cried, seriously, it was completely and totally amazing to watch her.

But, during all this I could see Baby getting overwhelmed by the noise, the lights, the crowd... it's weird how I recognize it now.

I also know that all my kids are a bit anxious and overwhelmed by all the boxes beginning to pile up in our house...


Yep, lots of them.

We are moving.

I do think that Baby is starting to catch on that there is going to be a big change.

Marc and I decided a few months ago that we needed to make a move for the kids to grow up in an area with more opportunities for adults with disabilities so that when they grow up there are more options for them. We also decided it was a good financial decision for us as we would be saving on gas and would be able to change up our loan a bit to be able to save more money for the kids' futures.

After making an offer on a short sale in the area we want to move to, we put a for sale sign in our front yard.

It was so hard to do.

We have been here over 8 years and love all our friends and neighbors dearly.

We LOVE, with all our hearts, our children's teachers whom they have grown with.

It was a very tough decision.

We knew it would be hard on us and the kids.

I am just now realizing how exactly tough it is going to be on the kids.

We had 3 offers come in on the house before a week had even passed and by the end of that week we had accepted an offer and had agreed to close at the beginning of January.

We don't have a house to move into yet.

The kids are confused.

We will be living with my parents until the house we made an offer on can go through. (Short sale? Whatever!!)

It's all going to be so hard on the kids.

Which makes it hard on me...

I KNOW this is the right decision, but, I have noticed that sometimes the right things are the hardest to do.

So as I wade my way through the sea of emotion and hyper-arousal I will try to remember the big picture and know that Heavenly Father will bless us in our efforts to ultimately do the best thing for our kids.

5 remarks:

Johnny said...

I have seen the growth and maturity of Marc and you over the years. When I'm down lately your posts and blogs have inspired me and helped me gain perspective in my life that my struggles are not so bad or as hard to handle. We will miss the bright glow your family shares with every one you guys meet. I hope to keep in touch over the years to come in order to see the your families story.


Rosanne Orgill said...

wow that is amazing, I didn't know that you went through all of that, how scary and how nice that you know what to do now. I hope you find a home soon that will work for you. I hipw you will be alright living with Judy:)

Openshaw family said...

We will miss you all greatly! As you said in your post "Who can argue with promptings you have from the Lord!" I hope you can find the happiness and opportunities you are looking for in your new home! We love you all! Carlotte

Bonnie@TheFragileXFiles said...

I still don't recognize the signs of hyperarrousal. Well, after the fact I do. It's the things that led us to the hyperarrousal that I'm missing, I guess! Good luck on your move. You're right, the right things to do are usually the hardest.

Suzy said...

Holy Cow! Email me and tell me where you are hoping to move.