Tuesday, July 11, 2017

I'm giving up! I'm not doing this anymore!

That was going through my mind this morning as Brother was screaming at me again.

I say again, not because it doesn't happen often, but because it had just happened last night.

Marc and I endured an escalation of aggressive emotion and verbal attack when we reminded Brother of his conditioning for Cheer at the high school gym with his peers.

Brother is 6 foot 1.5 inches now, his voice has deepened, and although he is very skinny, he is solid muscle.

Being screamed at by him is intimidating to say the least, but it also wears you down as a parent and caregiver.

I've talked about it before that our kids, Brother especially, has such extreme anxiety of almost everything, especially social situations, that he will completely melt/fall apart/freak out to the point that an outsider would think we were either torturing him or that we were forcing him to do something he hates.

When he screams at me like he did last night and this morning, I start to doubt my mother's intuition and wonder if I am pushing him too hard and that I will hinder him in some way by pushing him out of his comfort zone.

Last night, after being screamed at for a solid 15 minutes... not typical teenage rant at a parent kind of screaming... more like a dying, underfed, over-worked, hormonal, emotional, disrespectful teenager. Trust me. There's a difference between your teenager yelling at you and how my teenager yells at me.

Just trust me. Don't tell me all teenagers are like that.

They're not.

Anyway, I was able to stay patient and calm last night and talk to him about the scenario of him sitting in his man-cave in his chair watching TV and listening to Shania Twain ALL day, EVERY day and not being with fiends, learning new things or having friendships. I told him that I can't handle the heartache, energy and and fear I feel every time Marc and I try to help him move forward to do something that he loves.

It's wearing, depleting, and nerve-ending on my emotions, my physical body and my spiritual well-being.

I just wanted to give up, but I wanted to talk to him openly about the situation.

He's really smart and understands everything you talk to him about, you just have to remember to talk to him like a young man, and when I do, it sometimes can calm him down.

We "talked" for a few more minutes and he came and sat next to me and let me give him a hug.

I felt accomplished that I had succeeded in communicating with him and felt like the morning would bring new hope.

Then I woke him up this morning.

As soon as he rose from his bed it was all out panic.

It took a lot of patience and a lot of effort and time, but after one hour my nerves were raw from the screams and the insults and the all out, yelling, but he had finally finished his shower.

I wanted to call his friend who was coming to get him to just forget it and don't come get him for conditioning after all.

But, for whatever reason, a prompting, or maybe just knowledge from trial and error, I persisted in getting him to his destination.

Brother was still screaming right up to the second that Lauren showed up to take him.

Then it was a calm, sweet, "Oh! Hello, Lauren" --giggle-- from Brother...

With no effort after that point he was off to her car and talking to her the whole way there.

My heart warmed a little as I thought, "Even if he only talks to her today and doesn't even do the gym, I'll be so proud of him for trying."

After Brother left I moved on to getting the 2 girls ready for summer camp and Baby kept yelling at me to get out of her room and then got upset with me because I had picked out the wrong color pull-ups. (eye roll inserted about here)

I was quickly reminded of how worn I was from dealing with Brother and all the feelings of falling apart or giving up and I felt myself on the verge of it again.

So with those thoughts came the guilt I feel, and Marc too, for not being able to be the kind of parents we want to be. It kills me that I am not the one to take Brother to all his activities and then watch and be proud of what he does. We want to be the involved parents so badly, but for everyone's benefit, it is better that we have someone other than us to get him through life.

It really stinks. I think of all the times that other parents will see Brother out doing things and wonder why his parents aren't there to support him. I don't want them to think that we don't care or that we just want someone else to take care of our kids. They will have no idea that he has two parents longing to be there for support and enjoyment.

I've judged before.

Everyone has, don't act like you haven't. It happens, naturally.

I've wondered before why a special needs person has no parent around or why someone else has to be there to do what a parent "should" be doing for their child.

I'm sorry I judged you.

I get it now.

It's not about being a lazy, neglectful, or unloving parent.

It's so much deeper than that.

Marc and I allow our hearts to ache so that our children can succeed in the best way possible. We want them to experience everything they possibly can. We have had to come to accept that sometimes, no matter what, they just don't do well with us. We, as their parents, are their refuge and safe spot, so instead of pushing past their comforts to do something they love and get joy from, they fall apart and either use us as the scapegoat or the punching bag.

I thought all this in my head in only moments, though it took so much to write it down.

After my mindful pity party, I begrudgingly went to Sister's room just waiting for the next ball to drop. Thank goodness things went well with her if you don't count the yelling at me when I asked if she had washed her hair yet. Oh boy.

I went and sat in my room and thought, "Meh. This is dumb. Why do I push them to do things? I'm so tired of having to put so much effort into getting them to do things they love or need to do, let alone things that are new or not as desirable."

After my resignation to give up there was a knock at the door.

Brother and Lauren were home.

I half expected Lauren to tell me that it didn't go well and that she didn't think this was going to work.

Instead, when I asked her to tell me how conditioning went with Brother and a cringing look on my face anticipating the news that he was awful, she said with a smile, "It went really well! His P.E. teacher from this past year of school is the coach so when he saw her he got excited and got right into the working out."

She also told me that Brother had turned to her at the end and said, "Now that wasn't as bad as I thought it would be."

That made me laugh.

Which was good because I needed to smile.

Within those few moments of her report to me of her time with Brother, I felt a twinge of joy that it had been a success.

I was reminded of all the many tender mercies Heavenly Father places in our paths.

I didn't know that his previous P.E. teacher, whom he adores, was going to be the coach there at conditioning. What a blessing that was. She even included one of his favorite exercises since he was there.

We are blessed with special angels in our lives who are willing and able to care for our kids where we can't or even shouldn't.

Later in the evening I witnessed another tender mercy when as we gathered with a couple of my siblings and parents at my parents' home for a Family Home Evening lesson.

At first I felt twinges of jealousy that Sister wasn't the one joining her cousins in leading the lesson and being reminded how different our children are. A few pity tears began to gather... then we sang the opening song.

Our kids never... OK, very rarely, sing songs with us during our Family Home Evenings and often are running off and I am singing as I run down the hall to fetch them or coax them into coming back in.

But here they were.

The three of them.

Brother is in the recliner chair to the far right... I couldn't quite get him in the shot... but he's there.

Sitting with their cousins and singing with vigor... well, Baby was vigorous (smiling and singing at the top of her lungs every word), Sister was shyly grinning as she sang and Brother had his back turned to us, but I could hear his deep tones every so often.

We all sang "I Am a Child of God."

My resolve to give up and not do this anymore waned for those moments. I found peace and joy in the time with my family and I was encouraged by our children's joyful participation.

I want to give up.

I don't want to do this anymore.

But, I learn often that it is not about what I want.

It's so much deeper that that.

It is about what I need.

What my Heavenly Father knows I need.

Just like our kids may approach something kicking and screaming and fighting it to the end, it isn't until they get past the fear and anxiety that they learn we, as their parents, are directing them to their own happiness and success.

I may be kicking and screaming right now, but I am slowly remembering how wonderful the destination is when my Heavenly Father leads me there.

Friday, July 7, 2017

The Year of Baby

NO! I am not making an announcement!

Trust me...

Have you ever watched "The Middle?"

If you haven't and you like my blog, or if you like me, you HAVE to watch it!!

Anyway, one of the main characters, 
Sue Heck always is so positive despite everything going wrong in her life... 
I love her! So she names her years so that it will be the best year ever, 
"This is the Year of Sue!"

Well, being as positive as I love to be, I am naming this Year of Baby!

Since I haven't really written much this year, I may have neglected to mention how much Baby is talking now. Starting about March of this year she started speaking in sentences!

Not as much grunting and pointing and indiscernible words, but actual sentences.

They were few and far between, but they were there.

Then toward the end of the school year she was talking even more and every body (friends and family) kept commenting in awe how much she was talking now.

I love hearing her little voice saying real words and saying, "Can I have a Pediasure, please," or "Say I'm sorry to me."

My favorite is hearing her sense of humor. A few months ago when she started talking more we were all in the van driving somewhere and someone in the car said, "I like (can't remember item)!" and someone replied with, "Me too!" Then, to our surprise, Baby piped up, "Me three!"

Ha ha ha ha!!

Marc and I looked at each other slightly astonished and proud and couldn't stop laughing at both the joke and our giddy happiness that our baby just told a joke! She told a joke in her own words! And it was funny!

Not only is Baby talking more, but she is starting to emerge from her solo career and is starting to play with others! I've especially enjoyed her budding friendship with my nephew who also has Fragile X Syndrome.

They both love and seek sensory input, so they are great playmates! (This is in Zac's back yard)
 She's also developed quite a saucy attitude along with her growth of vocabulary... not sure how I feel about that all the time, but I am grateful that I can see she can stand up for herself now. I just have to figure out how to help her tell the difference between standing up for herself and just being plain mean.

Pictured below she won't let her cousin, Jman color with her. She how she has her arm up in defense? Ya, we're gonna utilize that move when I teach her how to play basketball.

Baby is changing, growing and really becoming more than I initially thought she would be.

I hate to admit it, but I used to always think that she would be our lowest functioning out of our 3 kids. Now I wonder. She is showing so much personality, understanding and verbal expression that I have so much more of a brilliant future in my sights for her.

On the other side, I hate to get my hopes up. It's hard to hope for what might be too much. You kind of keep your expectations at a minimum---don't get me wrong---it's really more subconscious than something you actually decide to think. It just comes with years of struggle, heartache, and failure. Expecting less and rejoicing the mediocre becomes the normal. Oh, that sounds terrible, I don't mean it the way it's coming out. Nothing they do is mediocre to us. We really love to be excited and celebrate anything thing they do.

The other day I went out to draw on the sidewalk just because and Baby actually wanted to join me.

I was excited to have her there, but also insistent that she not draw on my spot.. you can see by the picture she tried to push that boundary as close as possible. Which, funny enough, it something I celebrated because she was understanding her will against mine and that was huge... anyway, here's what I drew:

I laughed when I got done because it kind of resembled me... Ha! 
But what I really want you to see is Baby's artwork:

She was so precise and calculated in how she was drawing this and even asked me for the black to do the eyelashes with!

I'm excited to have a partner while I chalk.

I might just have to designate her area with more definition... tee hee!

I'm so proud of her. She's such an artist and I find so 
much joy in seeing her talents and strengths shine.

And, yes, that is her walking Ranger, our dog... on our family walk through the neighborhood...with all three kids... and only one slight meltdown during the 2-minute walk... and that meltdown wasn't even from Baby...

It's going to be a great Year of Baby!