Like a kick to the gut

It comes out of left-field. You are plodding along in your life, when "BAM!" something comes along that leaves you feeling like you were just kicked in the gut.

Happened to me last night while I was looking at my Facebook updates. A fb friend posted an update about how she had 4 boys going to Chuck E. Cheese's for pizza and then back to her house for a sleepover. Pretty routine - unless you know what I know. That her son is a boy that my son considers a friend. He's wanted to have play dates with "Bob" for months, but I never got around to scheduling them.

"So he wasn't invited, what's the big deal?", you may ask. It's not this incident, it's the situation as a whole. Harry (who has Autism for those of you who don't know), longs to be included. He thinks the kids in his class are all his friends and he wants to hang out with them. The truth is, after a full school year, not one of the other 9 kids in his class has ever asked him to come over and play. He's only been invited to one party and that's because we were friends with that family before they started at the school.

Harry is just aware enough of social connections to long to be included and to feel the sting of not having all of these friendships. It just gets worse as he gets older. He doesn't think of himself as different, unique, {insert whatever word you want there to indicate he has Autism}. Harry just wants to be accepted, loved, and sought  out by other kids.

I'm left feeling guilty now. If I had encouraged a friendship with Bob, would this Facebook status had turned out differently? I don't know. It's hard for me to have his typical peers over, because I am afraid of their rejection of him. I know that I could work it out here in my home and try to foster love and acceptance, but just like it hurt me to be rejected by kids growing up, the pain in this case is multiplied by a factor of 10 because they are rejecting my special son who wants to much to be accepted.

I think now that I will need to suck it up. Plan those play dates when we go back to school. Try to foster these friendships and see what happens from there.

Updating a tween room

So my oldest daughter turned 11 in January and one of the things I promised her was that we could update her room. New paint more specifically. The room had been painted purple with yellow wall accents when she moved into it at age 3. I had been inspired by home decorating shows at the time and thought it would be fun to personalize her room. Did I mention that I'm not terribly creative? My accents switched around at the various junctions in the room and looked like a big mess, but it was her's. She also developed a bad habit of writing on the walls in sharpie!

So I had one guy come and quote the job because I am one of the world's slowest painters. He wanted $250 plus materials including an oil based primer, and it would take 2 days he said. Too much for me, so I started to resign myself to the idea that I would just do it myself. Then I found a second guy to quote the job for me. $100 plus materials and 4 hours max. I jumped on that faster than you can blink. 

The pictures below show the process of moving everything. This is much neater than she normally keeps her room. 

An added bonus was that I got to pull out all of the junk and state that it wasn't coming back into the room until it was properly sorted. I'm a little nervous that I'll find her on Hoarders one day. Not because she can't let go of stuff, but she seems completely unmotivated to do so.

As you can see, the youngest was very excited about the changes and had to insert herself whenever she could!

So the room is repainted now and she is moving back in. Just yesterday, from the things I stored in her closet, we threw out 5 bags of trash and an unspoken number of empty Lego boxes.

The pictures below show the new color and furniture placement. We are still moving things back in from the bathroom where I stuck them to get them out of the way. She found curtains online (in lime of all colors), but they are out of stock. Eventually, she wants to have this over her bed too. By the way, she chose her color before I showed her these ideas.

I've also got a friend that's planning to help me make a window seat cushion for the window-seat area. I'll post more photos as we continue to add to the room.

Other plans include adding some shelving for her special treasures where we can since that room has such a strange shape.

I'm looking at this rug for the area in front of her bed or the small love-seat.

I'm amazed at how much brighter it is in there and how much larger it looks. Maybe that's due in part to all of the stuff being out!

It's all coming back to me now

Lately, I've begun to remember something I had long forgotten. It may not seem like a big deal, but to me it is. I've begun to remember what it is to parent a "typical" preschooler.

See, when Harry was a toddler/preschooler, our lives were upside-down crazy. I was worried about if he'd ever talk, could he be potty trained, would he ever be able to leave his teacher Ms. Diane and go on to a mainstreamed classroom. The list goes on and on. I remember mourning the loss of not being able to have the intimate parent/child relationship that I had with Abbey.

What I didn't realize is how much that time in our lives scarred me. See when Abbey was this age, it was all breezy and easy. Sure we had our struggles, but nothing compared to seeing Harry through those years. Parenting came easier because I could actually communicate with her without printed schedules. We could have back and forth conversations that actually made sense and weren't only about her current obsession.

Anna Kate is at the age now where the differences are so striking compared to Harry. I find myself slipping back into the more familiar pattern of parenting. We have conversations (and she talks a lot!). She is interested in everything around her, wants my interactions, craves our attentions.

I love my son dearly. I hate having to sort through the filter of Autism. Constantly on my toes looking for ways to help him understand things he should have gotten long ago. It's not because it's more work - although it is. It's the constant worry about how he will manage in life. My girls will be fine - of that I have no doubt. It's not even that I worry that Harry will live with us for the rest of our lives. It's the fear that he will not be able to be alone. Who will help him when we can't?

I know that God knows and I'm supposed to take it to Him. I do. As a parent though, I can't turn that part of my brain off. I actually feel guilty in some ways for being so relieved at the easier form of parenting that comes with Anna Kate. We do struggle - but I know I'll be able to get my point across to her somehow - or with time she'll eventually get it. The question is  - will Harry?

Memories of Mom

Lately, I've been pretty grumpy with the kids, and my oldest daughter in particular. I haven't been sure why, and I've been trying to figure it out. On the way home as I was listening to my ipod, "Because of You, by Kelly Clarkson came on and it hit me. The anniversary of my mom's death is coming in a few weeks. It seems I have been mirroring some of my mother's worst behaviors lately and haven't been conscious of it.

My mom and I had a complicated relationship to say the least. She grew up in an abusive household having to take care of her brothers while her depressed mom hid from her responsibilities. Her father was cold and distant having had to learn to take care of his family at age 13 when his own father killed himself. When she married my father, my mom escaped all of that. She ended up pregnant faster than she expected and began having to take care of her own children before she was ready. Add to that a severely disabled child, one miscarriage, then me and you've got a woman on the edge.

Family lore says that before my disabled brother came along my mom was already a mess. She was depressed and abusive to my brother and sister. Apparently, she ended up in an mental institution where the treatment of the time was electric shock therapy. Combine that with the fact that my dad was a pharmacist and could keep her in meds, and you've got - well - a prescription for a mess.

My oldest brother and sister tell me that the mom I grew up with was different than the one they had. She abused me, just in different ways. My brother understands that - my sister still resents me, although she won't admit it to me. After my dad died, my relationship with my mom got worse. She was on a heinous cocktail of prescription drugs, depressed beyone belief and I was out of control, and responsible for way too much.

Over the years, she had many health scares, threatened suicide, and tried to commit suicide. In fact, she wasn't at my wedding because she had threatened to kill herself and my brother had her committed for observation.

After I moved away and gained some distance, with help and healing from the Lord, I began to rebuild a relationship with her, but it wasn't easy. I was always on my guard with her. She always knew what to say to get me worked up, feeling guilty, etc. I let her push my boundaries. When it came to my children, I tried to encourage a relationship between them, but it was hard because she lived so far away, and I felt so very protective of them.

During the last months of her life, she was finally going to get out of the town that had kept her trapped for so long. After an extended hospital stay - during which she came back from the brink of death -- again -- she entered a rehab facility to continue the healing process. My brother got her an apartment across from his (in another state) so she could be by both of her sons. All of us went to that town one last time to pack up her life into a U-haul to be driven away for good.

My siblings and I had a great time that weekend. Bonding over that experience is something we will never forget. When I talked to her, she was so happy. That was the last time I would talk to her - but I had no idea. A few weeks later, I discovered I was pregnant again and was preparing to call her. My brother left me a message while I was at work that I needed to call right away. The news was so unexpected. While recovering in rehab, she developed an internal bleed and died before anyone knew what was happening. I couldn't believe it. The woman who cheated death so many times and begged God to take her had finally gone to be with Him.

How do I know she's with Him? Because I'm the one that prayed with her many years ago to accept Him. My brother and I prayed with and for her many times over the years.

We learned that over the months before she died, one of our cousins figured out that she was taking medicines that were conflicting with each other and causing severe personality changes. She probably had been for many years since she doctor shopped continually. My brother and I both saw her beginning to change before she died. I still grieve for what was lost when she died. The chance for us to have a real relationship after all of the wasted years inhibited by drugs, mental disorder, and spiritual oppression. But, I rejoice because I know she is with my father, free from the mental and physical disease. Free to rejoice, free to to worship, and free to watch over our family and watch over my children that I have lost until I can join them too.

Caught Unaware

Tonight while I was at church, I was caught unaware by an overwhelming feeling of grief. I realized that I haven't really allowed myself to grieve what happened at our former church this summer.

I posted earlier this summer that our pastors had resigned and this had caused quite a bit of turmoil in the church. Our own lives were personally affected by this as we are friends with both sets of pastors. All of a sudden we were watching our friends leave and not sure why. Over the summer we made numerous attempts to get to the answers, but really, only God knows the whole truth. I feel like we have enough of it to know what we needed to, but the last 4 months have been very difficult.

I had to take on a larger role than I wanted to at church, my husband took on more responsibility as we began trying to decide whether to stay or go. It came down to if we believed the church would be able to continue on mission as we knew it, or if that mission would begin to change. We also watched our friends endure a ridiculous amount of slander from people that didn't even know them. Horrible things were said about them, assumptions were made, and they are trying to recover from the personal damage they endured during all of this too.

We decided that for our family's sake, we would move on to another church. So began the process of looking. That turned out to be harder on one of our children than we imagined. I won't say we've found a new church home, because that's actually a painful thing to say, but we have found a place we are visiting on a regular basis. It's still not "ours" though. We walk through the door relative strangers. I don't know the folks names as I come in the building and we don't have a small group. There are remnants of our former church still meeting as a small group, but I'm not sure how much longer that will continue.

So why the grief? I had memory flashbacks of small group at our pastor's home. The honesty, the care, the laughter. I miss hearing him preach. I miss walking into that building and seeing all of the faces that I grew to love. I almost miss pushing around those big black moving cases from Portable Church. More than anything, I miss the feeling of community. The can-do, we're on mission attitude. I miss having a church in our county that cared about our county and the world around us.

I struggle with why God allowed this to happen. What the bigger plan is. How come we finally found a good place - close to home - that allowed us to serve - and now it's gone for us.What's next? Why were our friends put through this? What possible good is going to come from it? What will happen to those of us that have left that church - will we be able to maintain our community apart from the binding influence of Sunday worship? What about those that have chosen to stay? What will that church look like 6 months from now? 1 year from now?

Good did come from some of what happened this summer. My husband took on more of a leadership role in our home and in the church during the process of the aftermath. I learned that I had grown past my dependence on a person to be my representative for a relationship with Christ. I was strong enough to have one on my own even when the people around me let me down. We did strengthen our relationships with a few other folks from the church - some of which still attend. I know I've grown personally through this process, but it hasn't been easy.

There have been days where I wanted to yell and scream at God and certain people. To release my frustration and disappointment at how they have behaved. When I heard some of the more ridiculous things being said about my friends, I wanted to lash out. If I were younger - I probably would have, but thankfully, I have learned some temperance over time. I am still angry about some things. A good friend told me that it was ok to be angry when she saw me trying to bury it under the pious pretense of not becoming resentful and bitter. She told me to embrace that anger and take it to the Lord because only then could He transform it. She was right - she usually is.

I guess the glimpse I caught tonight means I still have unfinished business to deal with in myself about everything. Just because I left it doesn't mean I've dealt with how I feel. I've just had to stop seeing it week to week. I think it's time to settle into this feeling for a while and learn to make peace with this too.

School is back in session!

So school started today for all 3 kids. Most of the other children we know started back 2 weeks ago, but our kids go to preschool and private school which all start after Labor Day. It's been a loonnnggg summer. With that said, I post a link to a great commercial that should have won some kind of award! Enjoy!

http://youtu.be/fwcYbo7pjto

Summer 2011

Typically, our summers are no big deal. We rarely vacation because of Harry's work schedule. I usually have the kids in lots of camps or Vacation Bible Schools as we tick the days off to going back to school. Summers are usually tough with an autistic kid. He craves a regular schedule and it's hard for me to provide that for him with two other siblings in the home. We go to the pool, parks, museums, run errands - everyday we have to do something. There's no lazing about for us. That's why I'm not such a big fun of summer. Well, one of many reasons.
I had high hopes for this year. Harry got a spot at Camp Royall again, we had some good day camps lined up, and next week, Harry gets to learn to surf with Surfer's Healing. Abbey went to her first overnight camp and had fun with her friends. Imagine how I felt when my summer began falling apart. So many things have happened that have come out of the blue for us - I feel like this is the worst summer I've had since the summer my dad was dying. Yes - it's been that bad. So what's happened you may ask. Let me see if I can recount it all.

1. Our Pastors left our church. Not a big deal you may say - you don't know us or our church if that's what you think. We had finally fit ourselves into a great groove with our church. Finally started making friends again, and we are actively serving in the Children's Ministry. In early July, it all came crashing down. Without benefit of gossip, our pastors decided to leave because of ongoing conflict with our elder board. Now we've lost people we are close to. Our church has no leader, we are struggling with our ability to trust the leaders that are left, I've taken on more work than I hoped to as a volunteer with our Children's Ministry, there are so many lies in the community about what's happened it makes me nauseous. Should I go on? We feel like we've lost family members. Church - my last bastion of peace is now a crumbled mess as those of us who are left struggle to figure out how to move on now. I don't know what's going to happen over the next few months. We have no pastor, and a volunteer team of people trying our best to salvage our children's program. Friends have left the church and more probably will.

2. A child I have known since she was 2 died in an apartment fire in Chapel Hill. She was Autistic and an only child. I can't imagine what this is like for her parents.

3. I've watched scandals and betrayals play out among friends and even national leaders. This seemed to be the summer of betrayal for lots of people I know. Close friends have been hurt by the actions of others who seem to either not care what they've done, or are so unaware that it scares me.

4. I've watched a close friend struggle with working with her Autistic son this summer. He learned bullying behavior at school and she's had to help him re-learn what is ok and what isn't. He still has his moments, but it seems to be getting better. The downside is that he returns to school in a week with the bully still in his classroom.

5. Several friends have lost their jobs this summer. I hurt for them and remain in a state of paranoia about what will happen to us if one of us loses our job. I know God is my provider, but it's scary to think about what would happen without our incomes.

6. I've been watching Harry regress for several weeks now. It's not been all at once, rather a gradual creeping in of things. He's not making as much eye contact with us, his stemming behavior has ramped up, he seems to always need to be moving around and going somewhere. He crumbles if I tell him we have a plan for the next day and it changes. His language is not as fluent. We're trying to combat this, but the only thing that will really help is returning to school. Did I mention he starts a new school this year and they won't begin until after Labor Day?

7. Yesterday, we lost our dog of 17 years, Lucy. She has been in constant pain for weeks, not eating, and refusing to go on walks. It was her time, but that doesn't make it any easier. The kids were sad and confused, but it lasted for about an hour. For me, the grief is just now hitting hard. Lucy was a sweet dog, independent to the end. She loved my husband more than me and it's just how it was. I picked her though when we went to the shelter that day and she and I coexisted together. Lately, she had begun making the Perry the Platypus noise when she wanted our food. It was very funny to see. I hated watching her lose her hearing and her ability to walk.

There have been some bright spots. Days of exploring museums with the kids, good friends just celebrated the birth of their baby after a traumatic pregnancy. Another friend has finally gotten pregnant after trying for months. New friendships have been forged and strengthened through the church tragedy. I know there are lessons that I am learning from this summer, but it's hard to put them into words right now. Perhaps next summer, I can finally write a blog about what this summer has netted for me in personal growth.

God is our redeemer and pastor. He alone knew all of this was coming and knows what is to come. I'm glad I put my trust in Him, because people will always fail us. Even those closest to us, because they simply can not fill that God-shaped hole in our heart.

Yes, I'll be glad when summer is over - but I am more than a little reluctant to think about what Fall is going to bring.