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LUCKY LUKE

Page's7

August 2012

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THE RIGHT THING TO DO

Aug 08, 2012 06:53pm (EST)

Back in May, we made the decision to pull Luke out of our local public school system and enroll him in a virtual academy for the 2012/2013 school year. Of course telling friends and family this has been less than fun. There are very few people who agree that we're making a good decision for him. I see those people as closed-minded individuals who don't know Luke well enough to make a judgement. They argue that school is the best place for him to make social connections and that he'll be missing out on all the extra-curricular social events that public school has to offer... and after all, Luke needs social help more than anyone.

Feeling like I have to explain and defend my decision over and over again is getting annoying and a little painful. I have started telling people that if they knew Luke at all, they would know that while he's at school, he eats lunch at a table by himself, while the other kids would rather sit on top of eachother at a different table than sit by him. That there is no recess in 6th grade, and even if there was, he'd spend it alone, being made fun of. And if they knew Luke, they'd know he'd rather sit down with a book about star wars or a science/technology journal than go to a social event with "peers".

The boy just wants to be challenged academically, get through college and start his jobs as a robotics engineer and a cartoonist. It's not that he doesn't like other kids or that he never sees any others. We have friends with kids that enjoy his company and he enjoys theirs. He's as into girls as any typical 11 year old boy would be. He talks about getting married, having kids, owning a home, etc.

I hardly think that alternative schooling is going to be detrimental to his agenda. In fact, the availability of advanced courses is at our fingertips, and the possibility of him graduating a year or two early is very real and very exciting to him and to us.

Could I look back months from now and wonder if I did the right thing? Absolutely, but as his parent right now, looking at all the options, I'm making what I feel is the right decision for him... And that's really all I can do... that and pray.

We got Luke's school books and supplies a couple weeks ago. Grace and Beth were looking through them and Bethany commented that the books and work he has for English/Lit. are the same that she was doing in 8th and 9th grade. Grace thought long and hard for several days and asked me if she could do the virtual academy as well this year. She feels like she might be able to get ahead academically and she likes the idea of having a more relaxed schedule and more electives. So... after making her take a few more days to really consider it, I registered her to begin 8th grade at home this year. Was it the right thing to do?

There's only one way to find out.

Posted by Page's7 | Comments: (8) | Permalink

FINDING AUGUST

Aug 02, 2012 07:49pm (EST)

Sounds strange, but I haven't really seen August since 2005. That was the year, at the very end of August, of pregnancy #5. Those last few days of August were filled with joy and excitement and disbelief that I was *finally* going to have that 4th kiddo.

Just like that it was September. September brought pain and darkness and sadness and hard feelings. It brought ugliness and guilt.

Every year since then August has just sort of... faded. We do the holiday and birthdays in July, then I see September looming. Waiting for me. Daring me not to feel it. I spend August cowering. I spend it psyching myself up for the future months.

It's what? August 2nd? I can feel the heaviness already. The urge to duck and cover is almost overwhelming. I'm testy, I'm impatient, I'm on edge. Social anxiety is building (more than ususal). I don't want to do anything, I don't want to go anywhere. I just want to hunker down in the shadows of August.

It's been a long time since September first lashed out at me. I keep hoping that perhaps one of these years, August will tell me that it's had enough of my nonsense. It will tell me to wake up and live the extra 31 (and then some) days I've been missing. Who knows what I could do with that time...

But today? Today I lay low. Safe.

Posted by Page's7 | Comments: (4) | Permalink

THIS, THAT AND THE OTHER.

Jul 22, 2012 08:58pm (EST)

I have a job that affords me less sleep than a human needs to function normally. It's a good thing it's only about 4 days per week. I also developed an energy drink habit, and unfortunately made the crappy choice to start smoking again during a particularly stressful bout back at the beginning of the year. I'm now left with trying to quit that again, and it's proving more difficult than I told myself it would be back when I talked myself into buying that first pack. Errgh.

I'm kind of a mess over here. Don't judge me.

There's also a fair amount of uncomfortable shifting starting up here at home. I won't go into details, but things are unstable at best.

We learned recently that we make too much money to get any help with medical insurance. Of course we don't make enough to actually afford to cover it all ourselves. So as of now, the kids and I are not covered. That means the hundreds of dollars of medication Luke consumes each month comes out of our pockets. That means no more counseling for Grace, no PT for Luke. Putting off talks of surgery he'll need until we can get him on another plan... It sucks. You try to work hard, do the right thing, be self sufficient and you get penalized for it. grrrrr.

The kids are all doing pretty well and seem to be enjoying their summer. Beth has been busy, busy, busy with sports and driver's training. One more hour, and she takes her road test! EEK! Actually, she's not too bad. Now it's finally starting to sink in that if she wants a car, she will have to pay for her own insurance and gas... which means getting a job. Hard reality for a princess.

Grace has been busy with golf lessons and friends. She turned 13 on the 14th of this month. I officially have two teenagers in my house! Yikes. She's also been babysitting since Ben works days during the summer. So there's 4 days a week we need at least 3 hours of daycare. She's so good with Nora, plus it gives her a little spending money for all the shopping she's been doing. For her Birthday, she wanted to go to the Mall of America, so Ben took her and a friend the day before. I was working, of course.

The big thing that she really wanted to do was get her nose pierced. And I said yes. Honestly, I thought she'd chicken out, but nope. She went through with it. Yes. She's 13. Yes. I let her pierce her nose. It's actually kind of cute and there are WAAAAY worse things she could be doing. Stop judging me!

Luke is just enjoying his summer. Staying up late. Sleeping in. Playing video games. Swimming. He's looking forward to school this year, because he doesn't actually have to GO to school. He's all enrolled in a virtual academy for the 2012-2013 school year. Heaven help us... that's all I have to say.

Nora is spoiled, but sweet. She's too smart for anyone's good. The other day while we were at Claires looking at jewelry, she picked up some toe rings and asked, "Mom, who introduced toe rings and why?" Yep. She's her brother's sister. 4 years old. Hard to believe she's growing so fast. She started t-ball this summer too. Let's just say she loves the social aspect of the game...

She's also taught herself how to swim. I'm quite proud of my li'l fishygirl.

I guess that's about it for now. Just some confessing/venting/updating. I miss being able to come here more often.

xoxoxo

Posted by Page's7 | Comments: (5) | Permalink

RE-REMINDED

Jun 20, 2012 10:17pm (EST)

Nora had a playdate with a little girl from her preschool class today. I didn't know the little girl other than Nora talking about her, and I certainly didn't know her mom. She (the mom) called Monday and said the little girl wouldn't stop begging to play with Nora. SO, we met at a park today.

I didn't go into this thinking it would be an attitude adjustment to me. I went into it thinking more along the lines of "Crap. I really wasn't in the mood for meeting new people today... snarl." BUT, Nora really has been bouncing off the walls and I figured if nothing else it would get her mind off of "Is the pool ready? Is the POOL ready? Is the pool READY?!?!" So off we went. When I got there, I was looking for a mom and kid that fit the impression in my head. A little girl came running up after a minute screaming "NORA! NORA!" They threw their arms around eachother and jumped up and down then off they ran! At that point I figured that must be the girl we were looking for.

The woman with the little girl... My first impression was that this must be Grandma. But no. It was mom. After talking for a bit, she mentioned that she was 45 when she had this baby. It was a second marriage for both of them and this was just meant to be. Very sweet, really. And brave. Not sure I could do that. Anyway, we chatted about kids and life and jobs and all that. When I mentioned Luke, she told me that Ben told her he has cerebral palsy and she had all kinds of questions about that, that I have come to recognize as questions from someone who knows something about it. I was about to ask, when she told me that her oldest son "had" cerebral palsy, but his "was" pretty severe. He "was" confined to a wheelchair. He "used to" make noises but couldn't speak. My heart kept sinking just a little lower with every past tense she used to describe her son, who sounded just awesome... She told me he died when he was 13. Since she seemed very open to talking about him, I asked some questions and she told me that his death was ultimately due to infected shunts. She was very open with the story of his last year and we both teared up several times. She also went on to tell me that they fostered several children with special needs for years and went on to tell me some of those stories. We sat quietly for a few moments.

Then she turned and said, "So, now you understand why I was asking so many questions about your son. I would really love to meet him sometime if that's okay with you." Well of course it is! So next week or so, she will bring her little girl to our house to play.

Her story, of course hit hard and deep in my heart. Once again reminded of how different Luke's story could be. I think I must've planted about fifty kisses on that boy's face and head when we got home. A much needed attitude adjustment for a mom whose been feeling discouraged and worn down and cranky.

So very, very, very grateful for my son, and really all of my kids.

Posted by Page's7 | Comments: (4) | Permalink

RUDE

May 02, 2012 10:29pm (EST)

A couple years back, we tried a program through the county where Luke was to be taken a couple times a week with a "mentor" to do fun, social activities with the mentor and other kids with special needs.

This didn't last long as the "mentor" was a total flake and angered us to the point of not having him participate any longer.

So yesterday, after an appointmen t with Luke's psych doctor, I was in a rather moody place. He has not gained weight and has not grown taller... again. So he's been in the same place for I want to say about 9 months. Barely making it past that 60lb. mark. We also are adding and adjusting medications which brings him to 6 pills per day, 5 of which are for mood/behavior. I always feel like such a lousy mom after these appointments. We have to talk honestly about what is going on at home, and no matter how I word it, it almost always makes Luke feel bad. He's been unbearably irritable lately, especially with Nora and has even begun to get physically aggressive with her. That's not like Luke at all and we just have to try something else.

We went to Target to get his prescriptions and do a little shopping. Between his and Nora's behavior, I felt like crawling under the shopping cart! We were waiting at the pharmacy counter and this young-ish lady comes up and says, "Luke! Hi!" and as I turned and looked at her face, my polite smile abruptly disappeared. It was that flake that "worked" with him for the county. My honest to god first instinct was to tell her to get the hell away... but I bit my tongue. She's standing there smiling ear to ear and asking if we remember her. Luke and I just looked at her and nodded. Neither one of us able to mask our true feelings. She didn't seem to pick up too quickly though. She asked me how Luke was doing. I just looked at her and nodded toward him. Then she says, "this is my little boy" and pointed to the kid in the back of her cart. We both looked at him and said, "Oh." I managed to squeeze the corners of my mouth upward slightly, mumbled a "well we better get moving", and walked away.

Yeah, I was rude, but I don't care. Just the sight of her brought back all the unpleasant feelings... errrgh.

Okay, done there.

I completed the first steps of getting Luke signed up for the virtual academy for next year. I'm pretty excited about it and so is he. I talked to his psych about it and she said she sees no problem for him with the program, but she's worried about me...

Yeah, I kinda worry about the same things. I guess whether or not I get burnt out is something we won't know until we try. I will keep my job, so it's not like I'll never get to leave the house, right?

This is just mostly a venting entry. I hope to be able to have some time later to fill in the rest of the family's stories.

Posted by Page's7 | Comments: (3) | Permalink

I.E.PLEASE CAN WE GET SOMEONE WHO KNOWS WHAT THEY'RE DOING?!

Feb 25, 2012 01:32am (EST)

I guess the title probably tells you about how well Luke's Middle-School Transition IEP meeting went today... I could not believe we were even calling it an IEP meeting. There was NO ONE there from the Middle school. Not ONE person. The physical therapist was not there. The occupational therapist was not there. His case worker has been flighty all year. I understand that she's fresh out of college and all, but... COME ON!

We went through what they see as issues and what we see as issues, but there is no way we are calling that "meeting" good enough. We requested another meeting AT the middle school with the WHOLE team in August BEFORE school starts.

I'm actually very very seriously considering homeschooling him starting next year. Academically he's way ahead. He would have more options at home (online schooling). I never considered it very seriously before because I figured that would be detrimental to his social development. Well.. at this point I know his social development is not going to improve just by being around other kids. He does not interact normally in any situation... ever. I honestly don't think he ever will. Of course we won't give up on trying, but being the object of entertainment and the butt of jokes he doesn't understand isn't going to help him. Kids are mean. They just are. It might not bother him that they make fun of him, but my heart can't take it.

I've talked to him about online schooling before. He really got excited about it. I guess we'll see how it goes. I'm just really, really frustrated with the whole system right now. It's like they think they're dealing with rookies!

Posted by Page's7 | Comments: (5) | Permalink

THE GOLDEN CHILD

Feb 11, 2012 10:45pm (EST)

Today is Luke's 11th Birthday. I can't believe it's been that long already.

Every year, his Birthday hits me differently than the other kid's do. The past couple years had been easier. I felt like I started to really heal and deal with everything, and just move forward.

For some reason this year is very, very difficult. I worked this morning and kept watching the clock. Each minute that ticked by was like I was living in two worlds. The one in my mind accounting for every event and emotion this day 11 years ago. It was so bittersweet. I was so thankful to have heard him "cry" when he was born, but sick with confusion and emotion as they took him away. The knowledge of how wrong and backward those minutes and hours felt. How foreign my child looked in the transport incubator before they took him to another hospital. Being unsure of the "rules". "Can I touch him?" shouldn't be a question a parent has to ask about their newborn. And even if the answer was yes, there was no part of him that wasn't covered with blankets, tubes or wires... a tiny patch of thin red skin between his hat, the blanket, and the ventilator tube... I wondered what he really looked like. I wondered if I'd ever see him alive again. Would my voice, my words stay with him? Could he even hear me in there? How would he know that I loved him? How would he know he wasn't all alone? How could I tell him I'd be there as soon as they let me? Was he in pain? How could I help him? How would he tell us? .... *Those* memories hit me hard this year.

But it's not just those. It's also knowing what I know now about his struggles. It's watching him work so hard for every step, every pound gained, every letter written, every relationship gained... and lost. It's the wondering even after all this time, what I could have done differently and how his life might be if I'd been able to keep him safe another 3 months.

I know. It's a little silly to think about such things at this point. I know it's "not my fault" blah, blah, blah... I know, I'm blessed to have him here, and that he's uber strong, he's super smart, he's going to do great things... Yes. I know.

But... Hello feelings, there you are. Again.

Posted by Page's7 | Comments: (7) | Permalink

I'VE BEEN WATCHING YOU

Feb 09, 2012 07:21pm (EST)

So Beth spent just shy of 2 weeks in the hospital. She's been home for nearly a week. There are many many issues that need to be sorted through, but I think I can say that she is starting to show improvement.

There are other issues happening here at home that aren't the most pleasent things to deal with, but I'm confident that I'll come out the other side a stronger person.

I don't often comment on other blogs these days and I'm sorry for that, but I am watching and reading and cheering and crying with you all from where I'm at. I love you all dearly and I am ever grateful for having SYS in my life. Thank you all for your love and support. I honestly don't know what I'd do without you.

xoxoxoxo

Posted by Page's7 | Comments: (2) | Permalink

WHO NEEDS SLEEP, ANYWAY?

Jan 25, 2012 03:31am (EST)

I just wanted to give a quick update and ask for more prayers and positive happy thoughts.

Luke's surgery went well. He had a bit longer recovery than we expected, but he's back to normal Luke now.

On Sunday of this week, I did something I hoped I'd never ever have to do. I dialed 911 to have the police come to my house and get my 16 year old out of her room. She was threatening suicide. She was admitted to the adolecent psychiatric unit where she will remain until deemed ready to come home. Usually 7 to 10 days, but could be more or less depending on how things go.

The whole thing is a little overwhelming for me right now and because I'm working a 7 day stretch right now with having to report at 3 a.m., I've been averaging 2 to 3 hours of sleep per night. It's catching up to me. I now have a nasty, nasty cold on top of my sundae of pleasent-ness.

Alright. I'm up too late again. Good night my beautiful Share family. Thank you for being my safe place.

Posted by Page's7 | Comments: (9) | Permalink

ALL ABOUT LUKE

Dec 12, 2011 11:49pm (EST)

It looks like Luke will be going into surgery again in the near future. He will be having the plate and screws they put in his right leg removed. His bone is starting to grow over the plate, which could cause issues. They tell us it's a very easy surgery and 3 out of 5 times, it's outpatient.

He is also falling a lot more and his hamstrings and left heel cord are slowly, but steadily tightening. He walks with a pronounced crouch most of the time and falls are getting more frequent. There will be more serious discussions in the next year about whether or not to release his hamstrings, or at least the left one. The concern is that a hamstring lengthening could make things worse for him, and there is no fix for it if it does. However, if his crouch continues to worsen and we never had the surgery, he'd eventually be in the same boat as if the procedure didn't work, so I don't know what to think.

There's time to think about it. It's not like the issue is going anywhere.

We had a parent teacher conference at his school a few weeks ago. His teacher agreed to let him do most of his homework on the laptop to help him stay organized. That is working much better already. He still has a few issues to iron out with making sure he knows his assignments, but I think we'll get there.

I also spoke to his psychologist about his behavior and school performance and his teacher filled out a survey for her. We have added Strattera to his other meds to see if we can get better results as far as his irritability goes. Hopefully it works and we can do away with one or two of his other meds. He now takes 7 medications and supplements every day. I hate that, but I guess it's better than seeing him struggle. And, being honest here, he drives the rest of us nuts when he's not on his meds, too.

We are also planning on starting him in some counseling to help him deal with some of his anxiety issues.

That's about everything for Luke right now, I think.

I have started working part-time at a bakery. Besides the getting up for work at 2 a.m., the job is actually quite enjoyable and pays better than I had expected. A double blessing!

I hope everyone is having a good December so far. God Bless!

Posted by Page's7 | Comments: (3) | Permalink