Spring

I love Spring. Blessed beautiful days outside. Gardening, exercising, chasing kids...

Tomorrow, Beaner, Goober (Rockstar's lil sis) and I are going here with our GEMS group.

In other news, I have stepped up to become our new GEMS Club Coordinator. A (volunteer) job rivaling that of youth director. We have over 60 girls, and are expanding next year.

What is a mom as busy as me doing taking on this challenge? Obeying. There was a growing niggling in my heart, and I tried desperately to avoid it. Finally I made a phone call, hoping the position was full. Indeed, it was not. I shall be doing one full year of intern-type training before taking over the whole ship. I have been scared to death of doing this, but I know God is asking this of me. It has been confirmed to me so many times in these past days in Scripture and devotion that this is where I need to be. Now as my "One Month to Live" book has said, my only job as the branch, is to be connected to the vine (God). It is the Spirit of Christ who is responsible for the fruit I bear.

One Month to Live

Our Church is doing the "One Month to Live" Churchwide Challenge

Supposedly this is going to get us up and living the lives Christ intends for us. I sure hope so, and I'll keep you posted. My month starts tomorrow, but I've already sneaked a peak at the first couple of chapters.

Stay tuned for Christ's work in me and my church!

I PROMISE.....

to get to that 8 thing meme, I mean it, I promise!

Today I am still so frustrated. I'm not gonna lie, I hate Schmoozer's new diagnosis. I could handle surgery (been there, done that), I could handle serious intervention, but to be told that my kid is just gonna go down into a semi-conscious, limp state and vomit every 5-10 minutes for a day, roughly every 3-6 weeks, in an ongoing fashion, well, it makes me mad.

He's only 21 months, many kids don't start this until they're 3-7 years old, on average. He's already dealing with Trisomy 21, Hirschsprung's Disease, hypothryroidism, and Reflux, c'mon? At first this appeared to be a complication of his Hirschsprung's, something he'd grow out of, now we know that this is something with which he will struggle for years. We can make every effort to manage it, but it will still happen. Eating journals, special diets, etc, they can help, but the average school age kid misses 24 school days due to this monster.

All of this comes on the heels of a stagnant, dry period of faith for me. Remember all those posts of faith? Where have they gone? I read through my devotionals in a cynical haze, when I read them at all. The wonderful families in my church who were so helpful and kind at first have tired of trying to help our family, the cards, calls, and offers of help have dried up. After two years of trying I don't believe I'm any closer to getting Bert involved in the kids programs, and I'm just plain disappointed.

I'm struggling, I'm really struggling right now. I don't want to be strong any more. I just don't want to.

Bert, a History

A friend on the Down Syn forum posted the link to the Autism Speaks Video Glossary. All of those questions I had melted away. It is abundanly obvious that Bert is on the autistic spectrum. I find it fascinating, I can't get enough. Other kids are acting like Bert. I don't know anyone IRL who acts like him, so when I hit on something online, I'm fixated. I'm not alone!

I get really frustrated with my church in regards to him. Not for lack of trying, we have been totally unable to successfully integrate him there at all.

First attempt: Leejo teaches Sunday School. Bert was 3. He would run off on me in public, so we put door knob covers on the doors of the room. Mom's gonna teach Sunday School so Bert can participate. First time, he played in the corner by himself. No big deal, it takes him longer to adjust. The second week, he straddled my lap, and held my face in his hands about 4 inches from his face. I now know that he was controlling his environment. He would turn off the lights and cause all types of trouble. I was commited, but had the Chief take him home. First trial of integration failed, lesson: remove mom from the picture. (remember, at this time I had no inkling that he was on the autism spectrum, I thought his problems were hearing).

Next attempt: Our church policy is that nursery is for 0-3 year olds. There is a "Children in Worship" program for 3-7 year olds, divided into 3-5, and 6-7 year old classes. One of my friends is teaching the 3-5 year old class the year Bert is 4. I talk to her about him, and the class is in the room with the door knob covers, so we give it a go. I send him to nursery, get him out for CIW, and send him down. He played in the corner, but at least he was out of the nursery. At this point I know his hearing is fine, and think that if I just use really consistant discipline that he will grow out of his poor behavior. Well, week 3, my friend offers to walk Bert downstairs for me, saving me the trip. She walks him down, and unbenounced to me, allows him to tag along with the 6-7 year olds, cuz that's where he wants to go. The 6-7 year old teacher does not know him, allows him to run in and out of the room, and all over the church basement, then dismisses him with the other kids, unattended. Beaner and I go to find him, and he is GONE. He will gladly just leave the premises, walk out the door and just keep going, so we check outside first. Then Beaner comes back through the church gym, where a cake and coffee fellowship is being held for pastor appreciation. Bert has taken 7 pieces of cake, and eaten the frosting off while we were trying to find him. Big sigh of relief. Sugar buzz for the day. Not a single adult who had entered the room in the meantime stopped to help the little boy with DS who was obviously unattended in the gym. Hmmmm

Now this year. Mom gets smart. We try "God's Safety Zone", our church's alternative to VBS. Every Wednesday morning for the months of June and July. Mom secures a "helper". Unbenounced to mom Bert has the helper at her wits end by the end of the first day. They are rotating helpers, and allowing him to run the church and disrupt other classes (including Beaners, much to her mortification), because they can't get him under control. But nobody tells mom because mom obviously needs a break. Mom finds out just how bad it got when on the Mission Trip, Bert's designated helper goes on a vent about what a Pain in the Neck and how out of control he is in a small group, forgetting that Rockstar is his sister.

So we are back to square one. My 5-1/2 year old goes to nursery still. He freezes dead in his tracks if we even attempt to get him into the Sanctuary. I don't even know how to start trying CIW, or Sunday School again. I'm at a loss. Bert always has a BM in nursery, it's part of his anxiety, and the attendants can never manage to get him changed, he resists.

Part of me wants to jump ship, but I really don't think there's a better church for us just waiting on the next corner. We love so much about our church, but really grieve that there's nothing there for Bert. I am working with another mom, whose son has MD, trying to get programs going, but the fact of the matter is that there are no willing workers.

So we will stay committed to our church, and work to build a program that will probably be too late for Bert.

Church Frustrations

When we started attending our church, we thought we had found the best church on the planet. The music wasn't too rockin' for the Chief, there's another family who has a son with DS. Our pastor can rip out a pertinent sermon like there's no tomorrow. My goodness, what more could you ask for.

Then it started occurring to me that every time I volunteer to help out it's the same faces, every time, and that our church has the typical 20% of people doing 80% of the work, and the remaining 80% doing the remaining 20%. Well, good luck finding a church without that problem, so ya suck it up and deal with it.

Now we are hearing and seeing some really ugly things that are really hurting some really good people. Our youth directors are dedicated and loving. They made no hold barred efforts to get Rockstar involved, and now she is, due in large part to them. They welcome young people into their home whenever they feel like dropping in, they live their beliefs, and have done a fantastic job or reaching our kids.

Now many of the kids like youth group so much, that the ones who still live close want to attend even for a few years out of high school. While I think it would be best to have these older participants take on additional responsibilities for keeping the youth group running, and to have them there as mentors, rather than just participants, I see no trouble in keeping them there.

Now some in the church disagree. Their kids aren't Seniors like the Rockstar, and I could see where if my oldest child was a 14 year old freshman, having a 21 year old in the youth group would sound daunting. I would certainly be there asking questions and making sure all is above board.

But that's not what's happening. There are people screaming, fighting, calling names, pulling out all the stops to make life miserable for our youth directors.

I don't care if the directors are the nastiest people on the planet and are outright wrong, there is a good and proper way to deal with these things, and ugliness is not it.

I am just so sad. These are the pillar families of our church. What would this look like to invited guests? What does our church look like to the world? We look like hypocrites, plain and simple.

This is why so many good people who believe in Christ stay away from the church, this is why we have such a bad reputation in the world. This is all pride and sinfulness at it's worst.

I hope and pray we can work past this. My heart hurts so bad for my church.