Scary night and worse morning.

We had tornado sirens going off last night. We had the kids all awake and hudled on the couch, waiting to go into our dark, wet, stinky basement until we had to. We didn't end up needing to hide out, but it really was exciting watching the lightning and wind. I like storms, but Madison was freaked out. Then at about 3am Chris got called into work to restore all the downed power lines.

So I didn't fall asleep until about 5am, then up again at 7 to take Tyler and Maddie to school. Jacob never went back to sleep after we woke him up at 1:30am. I decided not to take him to school, since I was way too tired to do my daily 3 hours of driving, and he hadn't slept and was grumpy. So at about 9:45 there was a Mcdonalds commercial on tv and Jacob was begging to go there, and getting mad about it. I signed to him we'd go later, and thats the last thing I remember.

At 11:15 my phone rings, wakes me out of a dead sleep on the couch. As soon as the phone rang I woke up in a panic- Jacob wasn't right beside me any longer. Chris tells me he just picked up Jacob several blocks down the road. I didn't even know he got out.

It was truly a blessing that Chris got off work early. There's no other time he'd be driving down the same street Jacob was running down. And if he hadn't been working overnight, it would have been a regular schedule and Jacob could have been gone until I eventually woke up- who knows how much later.

Jacob had closed all the curtains in the living room where I was asleep, turned off lights, unplugged the TV, and turned off the alarm on the back door. he does this when we pretend- obviously he wanted me not to wake up. He also must have climbed over the fence to get out of the backyard. He was so intentional in his sneaking out. I'm just so thankful for Chris finding him.

Jacob may have had a goal in his mind, but he had no idea where he was going, had nothing to identify him, and had on a cub scout shirt that is many sizes too small so only the very top button could be buttoned and his big tummy was hanging out. And no shoes. I think you all know he doesn't talk and could not tell anyone who he is or where he lives.

I feel quite ill about it. I am so mad at myself for falling asleep. Things could have been bad.

Jones Crew- Feb '12

Friday, Friday, Gotta Get Down on Friday

Another lovely day on my own, exploring my part of Iowa and taking pictures. I am loving the small farm-town charm!

Iowa State Capitol Building

Today I was able to spend a few hours by myself taking pictures near my home. I plan to do this every Wednesday since Jacob has a half day and it is the perfect time to use those few hours between dropping him off and returning to get him to do something I enjoy. 

Someone Else's Child

I am facing a huge delima. I have never been in this situation before, and my mind is consumed by it, day and night, and I know that I need to take steps to make it better. But how?

I have been witnessing, for quite some time, a family of three children with single mother that is going downhill. There is no lack of love, or of a desire on the mom's behalf, to help these young children grow up happy and healthy. But despite that desire, there is an extreme lack of parenting skills and understanding of how to raise children. It breaks my heart every day.

I watch this woman, my friend since I was a teenager, as she continues to make efforts, but fails nearly every time. She has had many other people (extended family, state agencies, school professionals) try to step in and help with the raising of her children, but every time the responsibility falls back on her, the kids become more and more difficult, violent, and emotionally withdrawn. There are no fathers in the picture, no male influence at all. My friend is hanging on to the very end of the rope, about ready to let go.

In the past several months, her oldest daughter has been sent to live in a "children's home" for kids with severe behavioral challenges. She was initially sent there for 2 weeks, but it ended up being a 3 months stay. This child is 11. Now she has returned home and is reverting back to the behavior that she was committed for.

The middle child, a boy, has had the police called 7 times for aggression towards his mom and sisters. He has a court date next week for an assault 4 charge. The result of this court may very well be sending him to JV. He is nine. I was at this boy's birth. I have seen the different sides of his personality, and I don't think it is too late for change.

The youngest child, a little girl, has been ok until very recently. All around her she is seeing aggression and neglect and has become a victim. I know she recognizes the attention her older siblings are receiving, and must think the only way to get some of that attention for herself is to act as they do. And who can blame her? Every day is a war zone in that home.

I want to bring the boy to live with us here in Iowa. We are far from perfect ourselves, but my family has love to spare, and a strong desire to show this little boy he is loveable, and to teach him how to be happy.   He loves no human beings more than he loves my son, Tyler and my husband. They could be a great example for kindness and gentleness and love for him.


It would be a difficult transition, no doubt. An extra body to feed and clothe and care for. But the chance that we could make a difference by helping this precious boy to feel loved and wanted, how could I not offer that? I know it would be worth it.

I am stretching out my arms, ready to love another woman's child. And she is there, grabbing my hands and begging for a safe place for her baby. Can I do this?

All Mine

Come On In

Perry, Iowa

Yesterday was the first snowfall of the winter season. I watched it anxiously last night, worried about driving the 80-mile round trip to Jacob's school this morning in far below freezing temps, and praying my vehicle would keep us safe and warm.

And now here I am, two hours after Jacob waved me a happy goodbye, lounging contentedly at Village Inn, eating banana pancakes, alone.

Alone!!

I love being alone. Even if I knew someone here in small-town Iowa to invite to breakfast with me, I wouldn't.  There are several other patrons in the restaurant around me, and I can hear the low hum of their conversations and the distant clinking of dishes in the kitchen. This gentle buzz of life and activity makes me feel wide awake and part of a community, while enjoying the peace of not having to entertain or care for anyone but myself.

I get the impression that most of the people here are "regulars." Its kind of comforting, seeing them greet each other like old friends and waitresses delivering coffee or hot chocolate to their tables even before their jackets are off. Maybe this little city will grow on me.

I'd hang out in local cafes' every day if it was in the budget to do so. Reading the local news, catching up on emails, and updating my neglected blog. And, of course, savoring the banana pancakes (which are perfectly soggy with maple pecan syrup.)

It is Jacob's 8th day at his new school. It has gone remarkably well, but for one day. Three days in he decided he didn't want to get in the car for our 45 minutes drive to the school. Being the stubborn, strong kid that he is, I couldn't force him.

I called his new teacher, Erin to let her know what was happening and that Jacob would be absent, and she decided right then that she would come get him herself. She explained that if he knew he could fight me to stay home, he'd continue to do it.

She was right, of course, saying we couldn't let him win this one. He would have to learn that he could either ride with me in relative comfort, or be forced to leave me at the doorstep and ride with 4 people he barely knows. (And I should note here that never, ever, in any of the past schools Jacob has attended, was the staff willing to do anything close to this to help me out.)

As I waited for her, and three assistants, to arrive at my door, I was preparing for the worst.

And it was THE WORST.

Imagine an intense, emotional movie scene where there is a crazy mental patient and the guys in white coats are there, wrapping him in a straight jacket and tearing him away from everything familiar to put him in a van and transport him to the nut house forever. It was like that.

Jacob was screaming, crying, and it took all four of the adults, who are carefully trained in ways to restrain a student without hurting him, to manhandle him into the van.

He was scared, completely unsure of what was going on. I was feeling regret at allowing this to happen to my son. They closed the van door as he was crying out, "mom! mom!" As soon as they were out of my line of vision I broke down.

This child is like an extension of myself. My most constant companion and a huge chunk of my heart. How could I let them take him away from me in this manner? Surely I was damaging him for life.

I cried and regretted it for a good 20 minutes, at which point a text came in on my phone. "Jacob is fine. He stopped crying after 10 minutes and is playing a game. You can breathe."

Of course, then I cried more, with thankfulness and relief that my baby was OK and I was not a terrible person.

When I picked him up that afternoon he seemed completely happy and not scarred in any way. Another few tears of gratitude escaped. I crossed all my fingers and toes that it would only take that one time to convince Jacob to get into the car with me every morning.

I haven't yet uncrossed my extremities, but things are looking hopeful that he is adjusting to this new routine. I know that he will make great progress as he continues to attend this school, and I am so pleased at what has been accomplished so far.

And so here I sit, now done with my breakfast and my belly full, thinking about how I can fill the rest of my day.

But, wait! I am realizing that I don't have to rush anything. It could be like this Monday through Friday for months on end! And this cold winter afternoon seems just perfect for a nap.

Alone.

New School

Went to visit Jacob's new school today. It was excellent. The school is old and charming, and every area of it is set up for special needs kids. There are 37 students total as of now, with 37 aids and 7 teachers. Everyone who works there, form principal to teachers down to janitors, have MANT training- skills for keeping a child safe during aggressive behaviors. I saw this in action as a kid was running down the hall and, in addition to the staff following him, the principal stepped in to stop him as he got close to the stairway.

The school has kids age 9 to 21. The morning are focused on educational goals, afternoons more on living skills. At about 13 they begin teaching them work skills- shredding, wrapping, labeling, kitchen basics, etc so that they can possibly go to work when its appropriate for them to. They also have two outings a week- one fun (swimming, bowling) and one that is also fun but more for learning to be in the community (eating out, shopping, library).

1/3 of the kids live there, 1/3 live in community group homes, and 1/3 live with parents. Its great that there is the option of having them live there, since they would be so familiar with the area, the staff, etc. If this was ever something we needed to consider with Jacob, it would be great to have him already settled in the school and with people he knows.

Its got beautiful grounds with several old brick university-looking buildings. I'm sure it is gorgeous most seasons of the year. Its a 45 min drive from my house, but school doesn't start till 8:45 so it won't be hard to get him up and there.

I saw the kids working in what would be Jacob's classroom. They were all one-on-one, doing IEP goals. They had iPads for student use, PECS, and everything a kid might need to communicate. There were 6 kids in the classroom, and 7 adults. It was great. The teacher seemed very sweet.

I'm sure I will remember more to add later, but it was a good visit and I am anxious to get him started. It will most likely be after Christmas break.

Yay!!

Here Is What You Have To Look Forward To Reading

Here are teasers of the things I want to write more about in the next few weeks when I have my house unpacked and my mojo back.

*Jacob made the local paper in Salem when the police had to find him for us, once again. This was true terror for me and Chris. Thank heavens the article let us remained anonymous and lessened the finger-pointing.

*Jacob broke my fairly-new MAC and lost all my pictures and documents. (Which is why I have been AWOL.) My heart is broken for all the beach, first day of school, downtown Salem and other great pics I lost on my dead hard drive. :(

*During our move across the country, a stranger called tho police when she saw us manhandling Jacob into the car with force. Um, Lady? what do you advise we do to keep our teenage-sized-but-toddler-minded-and-violently-tantruming-autistic-child-who-can-escape-any-kind-of-safety-restraint from running into traffic in a strange city? Cause I promise you that, left in your self-procliamed more capable hands, he would have kicked your 115 lb butt and gotten away, weather you are a nurse or not. But thank you sooo much for glaring at us from across the parking lot until the cops showed up. It was oh-so helpful to the situation. And for the record, the police sided with us. Burn.

*3+ months into the 2011-12 school year, and he hasn't gone a single day. Mommy needs a break.

*Even though Jacob was approved in the past for the Katie Beckett Medicaid Waiver, and rumor was that, once accepted, a child could not be denied in the future, AND said Katie Beckett was an Iowa citizen, all signs point to him not being eligible for the program in IA.

*I hope I am wrong here, but so far my research says that, here in Story County, kids with ADHD can get respite and other supports. Kids with a full blown autism diagnosis don't qualify. I'd gladly let him bite all the involved lawmakers to get that ridiculous rule changed.

*So far in Iowa people have been very kind. We have had dinner invites, cookies delivered, and even got to put Jacob on a horse, which he loved. I truly hope they all still like us after they get to know us better and Jacob hits, bites, steals toys from, or in some other way tortures the local children.

Now that all these headlines are out there, I have to hold myself to expanding on them. Stay tuned.

September 11, 2011

After 2 weeks of relative peace- I leave the house for a couple hours and my kid decides to break the trend.

The iPad battery died and it completely set him off. Despite Brittany's efforts to make him happy with an alternative while the iPad charged a bit, Jacob was already swinging and biting and pinching her as an outlet for his frustration. The iPad got thrown several times, at one point she had to lock herself in my bathroom while Jacob threw objects at the door from the other side. She has been trained in self-defense and restraint (the same program we are currently learning) yet was unable to use her skills to contain him and block his limbs. In desperation, Brittany screamed at the top of her lungs and Jacob stopped his freaking out and stared at her for a moment, and then walked away. End of tantrum.

And I was leisurely wandering around a garage sale a few blocks away, completely missing a phone call from Brittany. I came home about 30 minutes after the tantrum had ended. Jacob seemed like nothing had even happened, but Brittany was obviously in recovery mode. Tears were shed. She told me the iPad was broken (it isn't) and apologized for making him mad and told me the neighbors may be curious about the scream. I tried to reassure her was not an isolated case and his reaction had nothing to do with her respite skills. It could have been any of us in her shoes. I really, really hope this isn't the end of another caregiver.

So I have noticed for the past 2 weeks or so that Jacob is walking differently. He's always been pigeon toed and used a funny gait, and when I first saw him moving this way, I assumed he had a rash on his bottom, and when that wasn't so, I checked his feet and shoes to look for a sore spot or blisters.

But now I'm thinking it may be a stim way of walking. Like hand shaking or rocking, some kids with autism walk on their toes. I wonder if years of medication had suppressed it. Its like he's just gotten off a horse and trying to walk tippy-toed.

I'm not worried about it, but I am going to keep a close eye on it. I think there may be all sorts of things in Jacob's behavior, health and personality that may be coming through after the meds are completely out of his system.

Another day almost over with no aggressiveness or tantrums. AND Chris got Jacob in the bath this morning. I could get used to this.

Note Pad

*Jacob said, several times, "Mom, help me." Unmistakably. Awesome.

*Somehow he shot himself with a paintball gun point blank on the hip. We all tried diagnosing the scene, but no one can figure out how he managed it. Its a perfectly round welt that will hurt for a few days. Ouch.

*No real aggressive episodes for 3 days. A bit of hitting and chasing, but none of what I call a full-blown tantrum.

*Jacob is eating nearly a third of what he had been a month ago. The med was known for increasing appetite and resulting in weight gain, and we have really seen that for the last few years. Now his appetite looks like that of a regular kid to me. Maybe we'll see some weight loss!

*No bath/shower in 8 days. I wipe him clean every chance I get, but he refuses to bathe, and it isn't worth the pain to me. Eventually he'll decide he wants to play in the bath again, hopefully sooner than later. At least he is in the good habit of hand washing.

*Madison downloaded a free app to her iTouch called "Tap to Talk." Jacob picked it up right away and within 2 minutes had made it say, "I want soda please." Could this be his first technology assisted request?

The longer I go without blogging, the more I avoid it. Today I decided that I don't need to worry about catching people up to date, and just write what I need to write to process whatever is happening in my life. So I'll tell you that the past few months have been our hardest, physically, emotionally, and financially and leave it at that.

Its 3 weeks into summer. Tyler had barely been home, already having attended two different football camps and begun practice for the freshman team. Right now he is in CA with a friend doing all the fun, touristy stuff in the Bay Area. I'm surprised that I am missing the revolving door of teenage boys.

Madison went to Girls Camp and had a great time, and also spent a few days camping with her grandparents. Just like I did at her age, Maddie prefers to use her summer break devouring novels and catching up on TV shows.

Jacob started off his summer by having the worst meltdown of the year on the last day of school, including punching several of the classroom aides and peeing on a wall. These three weeks since then have been filled with aggression and emotion and some of the most intense interactions to date.

Not awesome.

Today he has cried for the majority of the day, real tears running down his cheeks, which kills both Chris and I because we desperately wish to be able to understand why he is so upset. He tried over and over to explain to us what he wants/needs/feels but we just don't get it. Then the sadness turns to anger, which escalates much too quickly, and this cycle has continued all day.

Thats all I got.

I am really struggling. Several things in my life are extremely difficult right now, and I feel at a loss for how to fix it.

I am a fixer, an obsessive researcher, a don't-rest-till-I-have-an-answer type of woman. So trying to continue day to day with things I have no control over is really killing me.

The future is all up in the air. My husband lost his job. Its been over a month already and there are no prospects. We will have to move. We could lose our house with no income to pay the mortgage. Bills are being pushed aside and continue to grow. Its a heavy, heavy load on Chris and I both. He's feeling like he let us all down and I admit to agreeing. I am let down. I love this man, I need him. That hasn't changed. But we have a family that relies on him and now we are free-falling.

We lost our insurance. This alone will pull us under. I can't survive a single day without insulin to manage my diabetes.

Jacob needs his medications right now more than he ever has. The aggression has been intense. Today he hurt a caregiver. She left our house with bruises and tears. He violently threw things out the second story window. He slammed Chris' arm in the door and really hurt him. I had to hold the handle of his bedroom door as he threw furniture at it from the other side. I stood there crying as I forced my little boy to stay in his room in hysterics.

I am overwhelmed and afraid for the future.

I have to remember that I am loved. By my family and friends, and by my Savior. I am not alone despite feeling that way. I get hugged several times a day by my favorite people and we continue to laugh together in spite of it all. These are my tender mercies.

Cherry City In Bloom

~Capitol Mall, Salem, Oregon 4/4/11