Monday, June 20, 2016

It's a Miracle

I've alluded to it, but have been cautious to say much, but it's real.... We are seeing some maturity and growth in James. He's happy.

If you read last summer's posts about James you would know that this is a miracle.

In the morning he gets up and gets going on his chores right off. He eats breakfast with the rest of us and then he and I work together on his YD Bible lesson. He is thinking clearly and able to follow the lesson, fill in the blanks and reads very well from the NKJV Bible. After that it is routine for him to do some outdoor manual labor. He weedwacks, or whatever. Weedwacking is a forever job here... We have two weedwackers now and can use them both every day and not ever be 100% done. Wild fires are always a possibility and it is important to keep everything trim around the house.

James has been accepted to Young Disciple Camp. We have not told him yet to protect Missy, but eventually she will have to come to grips with it. I think he might know, but hasn't said anything, waiting for us to tell him. He has a knowing look when his friends talk about it, but he is showing great self-control in not asking about it.

We are going camping tomorrow... Glamping the girls call it. We are taking the tent trailer out to the Icicle, or Eight Mile and camping and during the day we are hiking Mount Cashmere which is a HUGE all day hike, of which a few of us may only go to Windy Pass, and the next day Colchuck Lake, etc... Vanessa's boyfriend is coming and bringing his mom. My mom flew out from Tennessee a week or so ago and she plans to stay home with Missy, but James is going with us. I have no doubts about Missy's ability to hike, but she is so incredibly cranky that mom has chosen to keep her so we can have a break. Pray for my mom!! It could be really rough. Missy found out yesterday and so I sat her down and we talked about how she is doing everything opposite to what is expected and safe and that she is discontent and stubborn and that I need a break. It's not that we love her less than James, but that he is showing maturity and we can trust him to be safe and content. She acted repentant for about 10 minutes after that.... but then she left the job I asked her to do and went into the freezer and took food, and then after being redirected she left it again and used a black marker to make tattoos all over her skin. The other day she got into a different freezer and was swiping the hiking food we were storing ... nuts and dried fruit and treats.

We decided to lower Missy's meds back down to where they were a month ago. It was pointed out that we may have gone past the level she needs. She started off in a depressive misery and the meds pulled her up, but we were not sure if a bit more would improve her moods  so the doctor  upped them again. But she went into this incredible arrogant, defiant, and persistent mode that would not back down for any reason and it is thought that she may have reached her ceiling for tolerance. Scary stuff. I'm thinking to go through Children's Hospital because I don't think the pediatrician knows very much about this stuff. I have not seen much of a difference since lowering the meds but it might take awhile.

James does have his moments. If we are super careful we can avoid a meltdown. He still does not transition without warning. So if I say he is going to weedwack after his lesson but change my mind and ask him to fold clothes I can expect him to scream and stomp. If I wait and not push it he will get over it. If we try to help him it gets worse. So, we usually just back way off and in minutes he will do what he was asked.

Sunday, June 12, 2016

Grappling With Our Reality

I've been concerned about not having a school plan for the kids come fall. With two of the girls going to Peru and one going to California for college I knew we had to come up with a plan. The options are super limited. And it seems even thinking outside the box was not really turning up any ideas. I wanted to go explore the idea of public school for Missy.... It's not as if she would be set free in the crowd. She requires full time, one-on-one pretty much, so I figured checking out what they would offer was a sensible thought. My husband was not ready to make that step. His concern is that everything we are trying to teach the twins regarding the principles of the Bible and his efforts to draw them to spiritual things would be lost by the influences. It's a real possibility. They have no natural inclination towards spiritual things. James is not resistant, and seems to enjoy his Bible lessons, but you know, he's super drawn to swearing and negative talk and the media culture.

We drove out to visit a small private christian school that takes a few special needs kids a year. It's a boarding school and no question, the kiddos are nowhere near ready for that. It was a very good visit, though. We learned a lot. We got a good outline of what needs to take place for James to someday qualify for the school. (I don't believe Missy ever will qualify). It's an absolutely beautiful place out in the woods. I was totally impressed with the program.

The visit gave us a springboard to talk through some things and we came to the conclusion we needed to visit the public school and see what they would offer Missy. Somehow, I had been told, or got the impression that our middle school did not have a self-contained room, but they do. This next year there will only be three other kids in that class. As I talked with the special ed directors they offered to tailor the program to fit her needs. They practically offered the moon. I was so, so relieved, and Steve, too. I realize that in the end we might not get the moon, but it's a good place to start. They are willing to work her in slowly if we want, or full-on, cold turkey. They will have a team meeting with me and her and work out a plan in August. We are completely satisfied that Missy's needs will be covered. Hey, they even have a little kitchen in that special ed room to teach the basic skills of cooking. Nothing makes her happier than baking (food) except swimming!

James would not qualify for this set-up. He is making advances. It seems slow, but suddenly taking note (and yes, comparing the twins!! 😱😰) the ever widening gap between the two proves he has potential - lots of it if we can just nab it and make use of it.  Our trip down the coast with just the two of them in the backseat for hours at a time gave us a window into some interesting dynamics.

I had filled out the Young Disciple Camp application forms for the twins. We did not tell the kids that we were applying for them to go. Lots of the friends from church go to this camp and it's all that kids can talk about sometimes. The twins have begged to go, but I have never given them any reason to hope. My daughter and her boyfriend will be counselors there. Vanessa and I talked about it and decided that with them there if something were to go awry there were people there who understood them and could deal with them until I got there... So I applied. I got a call from the director who knows our story. After chatting with him I pretty much decided to withdraw Missy's application and to pray about James' some more.  Somehow, Missy got the idea that I had applied. She started whispering to her friends that she was going to YD and everything. Then after the call she said to me and Vanessa, "have you heard from YD yet?"  I told her I had and that she was not going. This has been an obsession of hers and that was a devastating answer. She did not cry or scream but argued vehemently her cause. We had to end the discussion. Yesterday at church potluck she came to me greatly agitated. She said, "I told Joyanna that it is better to get an email from YD than to get a phone call. It is so unfair!!! I want to go....." She got all worked up and was trying to argue her case again. I have to somehow get through to her the futility of these arguments. She's not ready for a week  at a Bible camp, period. How to get that across to her, I have no idea. She spent the rest of the time going from person to person trying to arrange playdates and inviting herself over to other peoples' homes.  She was intense. She makes people feel obligated. Most did not take her seriously, thankfully, but one family - where the mom just found out she has brain cancer, did. I need to call them and explain it is not her place to arrange these events and it is NOT their responsibility to have her over.

I'm seeing I have a child with a real intellectual disability that is going to become a very real struggle for people to be willing to be around. She is going to make herself unwelcome and annoying everywhere she goes. I don't know what to do about this.

James on the other hand listened to all the discussions on YD and never said a word. He's waiting for me to decide to tell him if he is going or not. He knows that we are working towards taking him on the mission trip to Peru, he knows his twin is not going. If I cannot find someone to take her for those ten days then I will not be going either. I can't ruin the trip for everyone else because of her. Ah, she seems so sweet and innocent to the uneducated eye, but we are turning a corner where that is not the case anymore. She's demanding attention and asking for time and energy that is not hers to ask for. I am at a loss.

So, we have not solved James' school needs yet. He's big into sawmills right now. He saw a sawmill on our trip. Then we went to a museum and he got interested in the big blades and old photos. Now he's playing "sawmill" and "logger" in the yard with a pile of sticks and building lego sawmills. I am rewarding him with a few minutes of old history sawmill youtubes now an again and he's eating it up. Maybe with her out of the house I could homeschool him? I don't know. I'm nervous about the idea.

Sunday, June 5, 2016

How Are We Doing... and What is the PLAN?

We most definitely ride the waves here as you know. The kids moods rock and plunge and are all over the place and that hasn't changed a wit.

We are in a very good streak with James. He's happy, content, taking pride in his work and finding pleasure in growing muscles. The garden bins are almost  all full and James has pushed full wheelbarrow loads of dirt with determination for hours on end. He will show you his biceps if you have time. :-) He sprained his ankle the other day. We weren't sure how sore it really was but we gave him the benefit of the doubt until he forgot and stomped his foot  at his dad a few times and jumped up and down in displeasure at a request.  The sympathy pot instantly dried up. lol  He most certainly has struggled with moods over the winter.  Maybe even depression, but that's not the case right now.

Missy has tried my patience to the core. I have danced on eggshells all around that child for two weeks solid. Today was showdown time. She knows what she needs to do but won't do it. If I speak to her about it she does the opposite. If I put it on paper she ignores it. If I just draw the lines with consequences she stands on the line and taunts me for hours. For instance; in the morning she will stand in her pj's, hair eskew, bed unmade, animals crying for food in front of me practically begging for me to point out that she is not doing the obvious. If I do say something I've taken the bate for her to make a scene, argue, or go in a complete opposite direction than what she's told. BUT she has the patience to stand stratigically in my view and attempting small talk for what feels like hours. We totally recognize it is about a power struggle and so we make every effort not to give her her the pleasure of ruffling our feathers. BLAH!! We coach each other quietly and we walk away when it gets impossible....  Today though, when I saw that her every waking thought was bound up in this incredble effort to undermine my authority as mom of this house I gave her  the consequence I knew would mean the most. I told her tomorrow I would not be taking her on the outing I had planned to the water pad park with the little guys. Nothing means more to her than water and friends. The disrepectful words flowed easy. "You are so RUDE!" she said. lol.  I put her in her room and told her what I just told you. That very clearly she is in a power struggle but that this IS MY HOUSE and I AM the MOM and she would be spending time in her room figuring out that this was true. All the screaming, beating on the door, and making the alarm go off would not change my stance. If she chose to do those things I would not stop her, but she would probably have to buy a new door, I would probably leave the house and she would be in there longer. She stopped screaming. She keeps calling me every 5 minutes. I am not answering yet as she is trying to pull me into her manipulations. I choose when to give her a bathroom break, I bring her water and food and no one else is interacting with her until she softens the insane domination game. I left her some things to do to show me that she's willing to work with me. Her whole focus has shifted to GETTING OUT OF THIS ROOM!  So, I expect it will take time for her to stop trying to force me to let her out and get on with the business of doing what I ask - and no half-hearted slop job will do.
sassy little photobomber!!

While we came to the conclusion that for me to both parent and homeschool the kids is not possible, we haven't come up with any good plan at all. I thought I had an idea... but my husband is not okay with it.  AND nothing else has turned up that is plausable. That saying, we are going on a little trip to visit ___ ____ School. It is a day school for 6th grade up and a boarding school for academy. We don't live close enough for us to use it as a day school.... so I don't think anything will come of the visit immediately, but I have had this school in mind for our future for awhile. In fact, the school comes here and does a concert in our church every spring and we often host half the group. Some of the kids are special needs like ours and the staff are amazing and incredible with the kids.  I feel like it is important to build a relationship with the school and to look for ways to support them as much as possible because someday I believe they will be working with my kids.  But for now, there's still NO plan.

 We took the kids to the zoo and then to Deception Pass and stayed in a nice large cabin at Rosario. Our whole church was there so it was very nice.

at Hidden Lake. Cooling off from our sudden SUMMER!!