Saturday, October 25, 2014

I've "Got It Made"

A few years ago, someone told me, "Marty, you have it MADE."

I'm pretty sure they meant it as a "dig," and it made me kind of mad at the time...because, to quote the great philosopher, Beyonce, "you must not know 'bout me."

And, truthfully, I don't know about you. None of us knows what goes on with anyone else...really.

That comment made me mad, because life may be hard at times...but I CHOOSE joy.

Or I try to. Every day.

Even still, you don't want my life.

And that's okay...I don't want yours, either.

Because, I mainly write about the funny stuff, y'all know that, right?

And I mainly share about the good days...because there are a lot of them. And because I'm just a fairly positive person.

But there's just a lot that weighs heavy on my mind...all the time...every day. How could it be any other way? I have an adult child who is, and will always be, dependent on the care and concern of others. My thoughts are constantly on him and his well-being. I pray a LOT for God's protection over him with regard to his health.

I also pray a LOT for God's protection over him with regard to his safety. I am reeeeeaaaalllly watchful with who is around Joshua. He is just so innocent...trusting and sweet.

I pray for the best way for Jim and I to parent and care for him...the best way to enhance his life. Like I mentioned in my post yesterday, we are constantly evaluating what is best for Joshua.

I do not expect the same out of him as I do our other kids. I used to. Now I don't.

I don't want him to feel the same pressures that my other kids feel. I never want him to feel scared or unsafe. I never want him to feel pain of any kind. I never want him to feel lost, neglected or abandoned. I just want Joshua to have the best life...whatever that involves.

(For the record, we want the same thing for our other 3 children. We just expect more out of them, as far as their education and work. We know they have, and will again, feel pressure and pain and fear and love and loss and all of the negative things that naturally happen in the course of a life. We just pray and trust that they will have the skills needed to work through these emotions...whereas Joshua does not understand any of it...and just like you would watch over your young child as much as you can, that's how we watch over Joshua. We DO expect the same out of him with regard to obedience and respect and things like that...don't worry)

God has been so good to our family...so faithful. What we thought in the beginning would be our biggest struggle...and there have been some of those  days...has been one of our biggest blessings.

Joshua's birth changed our mission...it changed our family. It changed the way we parent. It changed the way we pray...how we minister to others...where we go...what we do. Because, at the end of every day, we not only have to be accountable to God for the choices we've made that day...the good, the bad, the ugly, the mistakes...we also have two beautiful brown eyes staring at us...willing us to be and do our best for him.

I thought more about the one who said I "had it made." They couldn't be more right. I have experienced loss, but I have a wonderful family and the sweetest friends who walk through life with us...and who have held us up during the hard times. In a world where many lack even the basic necessities for life, I have food, shelter and clothing. I have the opportunity to read and learn. I live in a free country where I can vote and choose and worship. And, even tho I am the most unworthy, I have a Savior Who died for me. He died for you, too! And HE gives me everything I need for each day.

Yep. Guess I really do have it made.

"For Thou, O LORD, are a shield for me...my glory and the lifter of my head." Psalm 3:3

Friday, October 24, 2014

Therapeutic Recreation and "Please Just TRY To Fit In..."

I write a lot about Joshua's Therapeutic Recreation (TR) group. It's not job-training. It's not "school." 

*Therapeutic Recreation is a purposeful intervention designed to bring about positive emotional, social, physical or cognitive changes in individuals with disabilities. Indoor and outdoor therapy and interventions are designed to foster independence and develop skills for improved quality of life.

Not all of the FRIENDS who attend this program have Down Syndrome like Joshua...but probably about half of them do. The others have various challenges and abilities. It is so precious to see the FRIENDS interact with and help each other.

*Therapeutic Recreation activities:

  • Teach new skills and knowledge
  • Build strong minds and healthy bodies
  • Enhance self concept, self esteem and confidence
  • Foster peer relationships and community integration
  • Develop life-long leisure skills
  • Improve quality of life
Some of my most favorite things Joshua's TR group does is when they go out and volunteer in the community. They have served lunch to various groups. They've participated in a "clean up" program out at one of the parks. They've helped with the Art Fair. Things like that. 

Some of THEIR favorite activities are Race For The Cure...going to Murry's Dinner Playhouse...working on their annual Christmas play. They LOVED going to one of the local TV stations and learning how all of that worked. They got their pictures made with the news, weather and sports personalities...and had a blast. The TR director and the parents all forgave the newscaster who called the TR group an "adult daycare."

They also love all kinds of celebrations, and they have a few of them each year. The FRIENDS love them a good dance.

I love that the FRIENDS have a place where they can come and hang out and be with each other and just feel...normal. The FRIENDS spend most of their lives waiting on someone to take them places...to work things out; waiting to go...waiting to be picked up...waiting, waiting, waiting.

I love how the FRIENDS love and care for each other. Even with all the "drama" I write about, any one of them would absolutely lay down their life for any one of their TR FRIENDS. They help each other. They understand each other. Even the non-verbal FRIENDS have figured out a way to communicate their needs to each other.

There are times when I just don't feel like making the 35 minute trip (each way) to and from Little Rock...when I try to convince Joshua to stay home or do something different than what his "group" has planned. He says, "they are my FAMILY."

So I say, "get in the car."

Something made me sad this week when I got to the TR Center to drop off Joshua. Several of the FRIENDS, along with a few parents, were hanging out in the foyer. There is one FRIEND who is extremely needy, clingy...and extremely anxious. She comes every day and it's the same every day. The only thing that seems to help is if she can talk to her Mom on the phone. She wants to be on the phone with her even during the activities at TR...and that is a no-no. One of the main points about the TR group being together is for socialization WITH EACH OTHER, and that's really hard to do if everyone has their phones out. I feel really bad for this one FRIEND, because I don't think she is able to enjoy being away from home. (I don't know how she acts at home...I have only seen her at TR)

Her Dad was one of the parents hanging out in the foyer-area. Actually, he wasn't hanging out...he was trying to leave. Typically, the parent or guardian comes in with the FRIEND, and signs them in...and then the FRIENDS go immediately back to the back...because they are excited to be there and see everyone! They put their lunches in the frig and hang out in the great-room and visit, while they wait on everyone to get there. This one FRIEND wanted to stay right by her dad. Now, she wasn't crying or acting upset or anything...she just wouldn't go to the back. And her dad was standing there as parents came and went...and FRIENDS ran up from the back and greeted each other like each FRIEND was a celebrity. And even tho the FRIENDS came up to greet his daughter, too...she would not leave him.

I could tell he was exasperated with her. As I opened the door to leave, I heard him say, "GO BACK to the back with everyone...and PLEASE JUST TRY TO FIT IN."

It made me sad because if there was ever a place where she could fit in...this was the place. This FRIEND...she DOES fit in there. The others? They all know her and they accept her just as she is...just like they accept every other FRIEND at Therapeutic Recreation. Because every one of them has a little quirk of one kind or another.

And it's okay.

My heart breaks for this FRIEND's frustrated and overwhelmed Dad. I'm sure he just wants the best for his daughter. He wants to know that she is okay...and that she will BE okay in the future. Like, when he and her mom aren't around.

There's no perfect program or school or job for our adult children who have challenges. We, as their parents and guardians...we are just doing what we think is best...FOR OUR FAMILY...at the time. It might change over the years...it might not. Please don't give us your opinion on our situation if we don't ask you for it. 

One day, years ago, when I was at my local Wal-Marks, a lady came up to me...a STRANGER...and she started telling me about her brother who was "like that," and she nodded over at Joshua, who was with me at the time. Thankfully, he did not hear all that she was saying...I tried to keep him distracted while she talked. 

I try to be an open person. I welcome people coming up to talk to me...about Joshua or whatever. I also welcome questions, because I know that most people mean well.  I am all about education and understanding when it comes to people like Joshua...and I enjoy opportunities where I can attest to God's faithfulness in our lives. 

Yeah...well, all that went out the window with this lady. First of all, I DO NOT KNOW YOU, LADY, SO GET UP OUT MY FACE. 

And second of all...she made Negative Nancy look like Kathie Lee Gifford. Seriously...what a downer (NO PUN INTENDED). 

And she was soooo condescending...that's what really got me.

I know that this all sounds like God was dropping a witnessing opportunity into my lap, and He probably was. Let me just admit: EPIC FAIL on my part. Because this lady? She rubbed me the wrong way right from the start. I could tell that she had been through a lot. She was older (than me...so, basically, she was like a crypt-keeper! Ha!). Things have changed a LOT for people "like that" and I'm so thankful that they have. I mainly tried to just listen to her, because I could tell that it had been a while since she had told her story, and she HAD SOME WORDS. And, you know, sometimes, we all just want someone to HEAR us. When I did comment, I tried to keep it positive and encouraging. She made me so upset that I was shaking by the time our conversation was over.

DID I MENTION THAT JOSHUA WAS STANDING RIGHT THERE?

And, it just reminded me of an elderly family member who told me after Joshua was born...that he had known a neighbor who had a child "like that," and that they KEPT HIM IN THE BACK ROOM.

What I wanted to say (but didn't) to this Wal-Mark woman was, "hey, lady...I'm sorry about your past. I'm sorry about your brother. I'm sure you and your family did the best you knew to do. BUT this is a new age. And this is MY CHILD. I don't judge anyone for the choices they have made or are making with regards to their adult children...because things change and everyone is different and we don't know the future.  We are just winging this, with God's help...BUT DON'T BE ASKING ME WHERE I'M GOING TO "PUT" HIM...what kind of "home."

 Because...news flash...he already has a home...MINE."

"...Whatever you did for one of the least of these brothers of Mine, you did for Me." Matthew 25:40

*information taken from the Therapeutic Recreation brochure

Thursday, October 23, 2014

A Day in the Life of Therapeutic Recreation: Cellos, Choking & Yoga

So yesterday at Therapeutic Recreation, the Arkansas Symphony Orchestra String Quartet came to lay some music culture on all the FRIENDS.

They responded by going to sleep.

Because it was sooooo relaxing.

SAW-REE string quartet people.

Actually, not all of them fell asleep, but some did. They, the FRIENDS, got to see and touch all of the instruments. I asked Joshua what he learned and he said, "the instruments are made of hair."

I said, "really? Or just the bows?" He said, "all of them."

He also told Holly that the string quartet people brought violins and a "chel-lode." (cello)

The drama that happened was that one FRIEND got choked on her ham sammich. Joshua said, "I was being the leader and I JUMPED out of my chair to go help her. When Jenni saw ME jump up...SHE jumped up, too, and we were both the leaders."

I asked repeatedly what they did to "help" this poor girl, and he said, "we were the leaders and we jumped up to help."

I said, "I.KNOW.BUT.WHAT.DID.YOU.DO?" 

We talked about how if there was ever a situation like that, the first thing to do was to tell Mrs. Alanna or another "helper" there...to get some instruction. And Joshua said, "IKNOWBUTIMNOTTALKINGABOUTTHATRIGHTNOW."

He finally said that Jenni took the FRIEND to the girl's bathroom and the girl "yakked up her lunch."

Alrighty then.

I guess it's good that Joshua and Jenni were at least aware of the situation and wanted to help. He said that most of the other FRIENDS got scared and ran out of the room...so I guess the moral of the story is that if you choke on your sandwich...you want Joshua and Jenni standing there watching as you yak it up.

*I did ask where Mrs. Alanna was during all of this commotion, and he said that she wasn't in the room...she was in the kitchen warming up her lunch. She waits until all the FRIENDS are done with the microwave before she uses it for herself. So sweet.

They also had YOGA in the afternoon. They always end the session with a mediation/relaxation time. The instructor will come around and rub their feet...which, Joshua says is very relaxing, except that he worries about the fact she is going from person-to-person without washing her hands in-between. Because FEET. So he just asked her to rub his back, and then he said he was so relaxed that he took another little nap.

So, if you're keeping track, I got up at the crack of dawn and drove Joshua into Little Rock to attend his program...where he had a nap, watched someone gag up their lunch...and had another nap.

I love the days when the TR group gets out in public and serves...and everyone gets to see how creative and awesome they are. But I also love the days when it's all about just hanging out and relaxing...because we all need those kinds of days, too.

"Teach us to number our days carefully so that we may develop wisdom in our hearts." Psalm 90:12

Wednesday, October 22, 2014

Playing Basketball With Robots

I got an ear-full from Joshua on our way to Little Rock this morning. Even tho I LOVE to sing along with K-LOVE on the radio, I almost always turn it off and just concentrate on the road...and on Joshua's conversation.

This morning, I asked him how it was going with his story writing.

I've written about this before. From my experience, many kids/adults with Down Syndrome have a "thing." Jenni's "thing" is that she writes baby-names. She has 10,000 notebooks full of neatly penned names...first and middle names. Writing those keeps her calm and adds structure to her day. As with anything, with them, it can become addicting...and her family works hard to involve her in other activities.

About 1 1/2 years ago, when Faith graduated from High School, I kept the bulletin with all the names in it and gave it to Jenni one day. She was thrilled because of all.the.names.

Joshua used to write poems...or "songs," as he called them. Then, for some reason, he started writing these stories. I've joked about the fact that they make NO SENSE to anyone but him, but it's true. He takes scenes and characters from his favorite movies and TV shows, like "Star Wars," "Harry Potter," "Twilight," "Frozen," "Boy Meets World," "Full House," etc...and he "morphs" them into similar characters with similar names in his soon-to-be-made-movie. He is convinced that Alex Kendrick (Facing the Giants, Courageous, Fireproof, etc) is going to pick up his story and turn it into a movie that will make a zillion dollars.

Write on, baby...write on!

This morning, he started telling me about what he's writing now. He said that he made our friends, Aaron and Tori, a part of his story, and they are wearing regular t-shirts and regular shorts. Then, he added "our" Aaron (the son-in-law) to his story, and put him in regular shorts and a cut-off Razorback t-shirt.

Side note: for some reason, it is very important what each character wears. He always talks in great detail about what his characters are wearing, and he always puts Aaron in some sort of cut-off t-shirt. He used to say that he was putting Aaron in a 1 inch t-shirt. Aaron and Holly tried to make him see how that is "fiscally" (how Joshua says the word "physically") impossible...even showing him how little a 1 inch shirt is, but Joshua wasn't budging on it...UNTIL Aaron said, "okay...I'M going to start writing stories of my OWN, and I'm going to put YOU in a DRESS."

That did not go over well...so now Joshua puts Aaron in a cut-off Razorback t-shirt.

BUT, that's not even the best part. He said, "me and Logan and Clark are all wearing Speedos."

WHAT KIND OF STORY IS THIS?

I said, "and so what is everyone doing?" And he said, "playing basketball with robots."

Ooooooooooooookay.

Alex? (knock, knock) Alex Kendrick?

"Remember the wonderful works He has done..." Psalm 105:5

Tuesday, October 21, 2014

Breath Spray, Pinnacle Mountain and Lake Drama

So, let's see...what all happened today.

Oh, yeah. Joshua's group from Therapeutic Recreation, went to Pinnacle Mountain and walked the base trail. Last night, when he was telling us about it, Jim asked, "are y'all climbing to the top?" Joshua looked at him and said in his best "Fred voice" (the voice Joshua uses when he comments on something that is so obvious)..."we can't climb to the top! We have (takes his hand and begins to count off on his fingers) Marcy and Taylor and Jackie...they can't walk!"

That Jim...he is SO funny.

On the way to Little Rock today, it was sooo foggy! Every morning, when we cross over the Arkansas River, we always look to the right to see Pinnacle Mountain. Joshua always comments on it, like, "I can see Pinnacle!" or something like that. Today, we couldn't even see the RiVER! Or the other side of the river that was RIGHT IN FRONT OF US.

We did see a car that passed us with an "I (heart) my dog" sticker on it. Joshua said, "that reminds me of Mr. Dan." I asked him why and he said, "because he used to have an "I (heart) my wife" sticker on his car." I was pretty proud of myself for not asking Joshua how those two stickers were even connected, being that Mr. Dan's wife is a HUMAN...and not a dog...but I let it go.

It was around this point that Jenni started texting Joshua. She texted, "I hope you brought your mouth spray." My first thought was that she thinks Joshua has bad breath. ROO. My second thought was that Joshua only has bad breath when he is out of mouth spray, and I think I've already stated that I don't want to live in a world where Joshua is EVER out of mouth spray. I asked Joshua why Jenni was saying that and he said, "ohhhh...she didn't have time to brush her teeth this morning."

I just HAD to ask, didn't I?

I also about threw up in my mouth.

The FRIENDS had a great time at Pinnacle. After their walk, they ate their picnic lunches. Then, everyone came back to the Center to paint the pumpkins they got last week at the pumpkin patch.

I picked up Joshua and we headed home. On the way, Joshua called my mother-in-law on the phone. He does this EVERY Tuesday and Thursday, to give her a detailed update of his day. And he calls her at straight-up 1 p.m. every Sunday, whether we are finished with lunch or not. He will just get up from the table and head upstairs. Don't try to mess up his schedule. It will not go well for you.

Today, they were chit-chatting as I drove...and apparently there was what Joshua is calling, "Lake Drama." It involved my father-in-law, who thinks he owns the lake and all the fish that are IN the lake...and a random fisherman (or maybe more than one) who happened to be in my father-in-law's fishing spot when my father-in-law came across the lake. Not saying it was intentional...the man may have been completely innocent in the situation, especially if he is under the notion that God made the lake and God made the fish.

Can I get an AMEN?

Because apparently there were some words.

Not saying what, because I don't know for sure. My father-in-law tends to exaggerate A LOT in order to get a reaction from my mother-in-law or the grandchildren. My mother-in-law told Joshua about it during their phone conversation, and Joshua said, "Papaw needs to set a good example...there's no need for a bad temper." And apparently my mother-in-law said something along the line of, "well, that's what happens when you get old," because Joshua said, "I KNOW he's old, Mammaw...I've SEEN him. That's still no excuse!"

I'm hoping it wasn't as bad as it sounds, because one thing I do suspect is that this might've been a situation that required my father-in-law to, in his words, "say his Sunday School lesson backwards."

Oh MY.

I'm just sure this story will get repeated tomorrow at Therapeutic Recreation!

"Let your speech always be with grace, as though seasoned with salt, so that you will know how you should respond to each person." Colossians 4:6