Monthly Archives: July 2012

Running in Sand

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This, like many blogs, is just a place to think aloud. To ponder life, ask ourselves questions. I personally like to refer back to older writings, letters, journal entries, and acknowledge how much I have grown and changed. Or how much my relationships have changed over time. I believe that is a key factor in a good relationship- it must evolve. If we aren’t changing, we aren’t learning, and we get stuck in a rut.

I’ve been thinking alot about the parent/child relationship. This is a huge deal to me as a parent of a child with some needs. I realize he will most likely be dependant on me for much of, if not all, of his life. This is something I have come to terms with- but also something I would like to minimize for HIM. All children reach an age that the apron strings should be cut, and the child should be on their own. Hopefully during the course of our parenting, we have given that child all of the necessary tools to survive life on their own. If that child fails or falters, whose fault is that? Is it the parent to blame?

My daughter is married, living in a different state. She is not yet 20 years old, but she has been living on her own, jointly supporting a household with her husband, for 7 months now. I still help here and there, but its extremely minimal. I am so proud that she is doing this- and happy in her life. We had her start working at the age of 13- the summer she turned 14- on a farm. We got some mixed reviews on this from people, like ‘let her be a kid’ or ‘let her have her summer’. She absolutely was able to be a kid, and she did get her summer, but she also worked her ass off and learned some valuable skills. The fields were hot, the days were long, the work was hard. She came home sweaty, filthy, bug bitten, sun burned, and exhausted- but she came home happy and extremely proud of herself. She learned exactly what it took to make a buck, and became aware of what she was spending. She didn’t automatically look to mom and dad every time she wanted something.

She went on to hold 2 jobs at a time while going to school full time as well. She worked, she saved, she learned. We still did alot for her, we paid for her cell phone, bought her a car and paid for the insurance monthly (and still do but not for much longer), we paid for her college, her wedding. But for the everyday stuff, the “i want to go out to eat” or “i need this new video game/purse/lip gloss” stuff- she earned it all herself.

So now, she is living independently and my methods have worked. Typically you’d just follow the same structure with the next kid, but with a special needs child, that’s not so black and white.

Logan has a very strong work ethic as well, and loves to help out. everywhere we go he says he wants to work there. it breaks my heart to tell him he can’t. I use the excuse that he isn’t old enough yet, but I feel bad lying to him. He sees kids his age working, and he wants the same. He just isn’t to that point where I can drop him off at a job yet. I can’t wait until he can have that, he is very much looking forward to it. So parenting him has been different, and I am learning as I go.

At some point this relationship starts to rotate. The child and parent start to switch roles. At what age does this happen? What age are you when you stop putting your hand out to your parents, and start taking over some of their care and helping them out? Taking THEM to lunch and treating? Driving THEM to appointments? Buying THEM the bigger Xmas gift? Helping THEM? 30’s? 40’s? older? I will likely be helping Logan when I am well into my golden years, and then what? What happens when I can no longer help him? Who will? I agonize over this. He has a wonderful sister and brother in law who have said they would take him without hesitation if something were to happen to us, but I am talking years and years down the line. Impossible to predict the future, and Logan just may surprise me, but as for right now, today, I think about this. I wonder. I worry.

I feel like my blogs all express worry! I truly am NOT a worry wart, I promise! I feel like I’m pretty laid back in fact, and I have often said that worry and anxiety are wasted emotions. You should not put energy into something that cannot be changed. It is what it is, whether I worry or not, but I prefer to feel somewhat prepared, and if I don’t think about it, I wont prepare.

You just don’t think of these things when you’re contemplating starting a family, or pregnant and shopping for little outfits. You think okay, pregnant, baby, kid, college, job, done. To find out your child can’t progress along that path is tough. It throws you on this detoured path with minimal road signs. You drive along, and wham! pothole, you’re on the side of the road with a flat tire. You’re stuck there for who knows how long. You try all the means you can think of, speech therapy, physical therapy, occupational therapy, horseback riding therapy, then you’re back on the road creeping forward for a bit.

Its kind of like running in sand. You’re getting there, but its painfully slow, and you have to stop and rest along the way. If you keep struggling you end up frustrated and exhausted and nobody makes any gains. We are tightrope walkers without a net, feeling things out and grasping at any thread of help offered. Some threads will intertwine and become sturdy, dependable life lines, while other threads are quickly let go of. You can never tell who or what will offer the most helpful advice, so you’re better off to keep an open mind and listen to everything. It’s a whole new ballgame of parenting, and some days I want to just take my bat and swing- hitting that home run. but it’s a curveball.

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Okay kids, I have been nominated for the Liebster Blog award by SooperDad Blog of Awesomeness! Thanks for that! If you haven’t checked him out, you need to do so- (also check out his wife’s page Pretty Pretty Please) ; )

So, I guess what this entails is: I have to give 11 random facts about myself. Hmmm..Okay..

Then I have to choose another 11 bloggers to nominate. I want to apologize in advance…I think most of the bloggers I communicate with have already done this and would be mad if I do this to them again…

Then I have to answer 11 questions that SooperDad has asked his nominees. Then I am supposed to ask my 11 nominees 11 questions…but I don’t have any nominees to nominate! I know I am wrecking the whole idea of this. Sorry!

My random facts:

1. I’m born, raised, will forever stay in New England. I feel that we have everything I could want here. Beaches, mountains, country, city, all within a couple hours drive.

2. I left home at 17.

3. I never away to college. I enrolled as a married mother of 2 after we discovered Logan had some issues. I took sign language, in hopes of teaching him and being able to communicate with him.

4. I made my daughter get a job at 13 and she has worked ever since, sometimes holding 2 jobs while working. I believe this gave her the skills she needed to be out on her own in the real world.

5. At one time I was addicted to popsicles. Sounds funny but its not!

6. I lost one of my closest friends when we were 12.

7. I’m 38.

8. I’ve only had 4 cars in my entire life.

9. My house is controlled chaos, and I love it.

10. I have held the same job for 12 years, working my way up from the absolute, very bottom.

11. I have been with my husband since I was 15 years old.

Now for SooperDad’s questions:

1. Choose a character or person (fictional or real) that closest resembles your life so far. Why?

I’ve never thought about this…I just did think about this for quite a while, and I can’t think of anyone! Cop out, I know, I know. I will keep thinking and come back to this….

Okay my answer to this is Marilyn Monroe. This is only because I love her, and not because its actually true that our lives resemble one another.

2. Mayo or Miracle Whip?

DISGUSTING. Mustard all the way. If its something that NEEDS mayo, I say mayo but sooooo light. Just thinking about mayo makes me gag. ew.

3. Is there any book you have read that you absolutely hated?

50 Shades of Grey

4. Best looking person alive (besides me)?

Well a couple of years ago I would have said Brad Pitt hands down, but really the Angelina Jolie thing has made him very unattractive to me. Even watching him be a dad, he’s eh. I would have to say David Beckham. My husband is in there too- still attractive after all these years.

5. How did you get into the blogosphere?

I’ve always loved to write, and always have plenty to say. I wrote a blog in 08 and forgot about it. I found it and decided to start again.

6. Who is your favorite comedian?

God these questions are tough. Um..it actually takes alot to make me laugh out loud. In terms of who do I enjoy listening to, who can really get me to belly laugh? Has to be Logan : )

7. Favorite charity? Why?

Windrush Farm Therapy horseback riding. Logan rides there and its been amazing.

8. Would you rather be wealthy beyond your dreams, or well-respected?

I know well respected is the mature answer to this, but really- I would LOVE to be insanely wealthy. It would be sooooo much funnnnn. I will pay people to respect me.

9. What is your favorite conspiracy theory?

That the Kennedy Brothers killed or had someone kill Marilyn.

10. How much wood could a woodchuck chuck if a woodchuck could chuck wood?

Uh, haven’t you see THIS?

11. Favorite 80’s movie? (If it’s anything other than the Breakfast Club, you’re wrong.)

HANDS DOWN 16 Candles. No contest.

Rush hour

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Like most kids with any sort of special needs, continuing summer education is crucial. School, camp, any kind of structure through the summer plays a key role in getting back into the swing of things in the fall. So Logan had a couple weeks off, and today was the big day: summer school!

We’d been prepping him for a week that he’d be going- but sometimes that doesn’t help. I’m not saying he ‘fought’ this in the traditional sense, but he definitely fought it in a Logan sense- which can drive me ABSOLUTELY INSANE!

The first thing he did was drag his feet about getting to bed last night, even though I warned him over and over, morning was coming fast and he would be tired. It was almost as if he thought by delaying sleep, he could delay going. He wouldn’t discuss it- turned his head and shut his eyes when I would mention it, so I just kept reiterating over and over, tomorrow you are going to school.

This morning the alarm went off, and I went to wake him..

I lean over his bed, directly over his face “Logan, time to get up” [quick left hook- successfully dodged]

“I will give you 10 minutes, and I will be back” [kick, book whipped in my direction- also dodged (yea I am fairly agile before coffee surprisingly)]

I go downstairs, get coffee and hear the ‘thud thud thud’ of his feet going across the upstairs hallway, bathroom door *SLAM* okay, at least he’s up..About 15 minutes goes by, no shower yet. I go upstairs, yell through the door to get in the shower, and I go into my room to start getting my clothes etc. I come out, bathroom door is open, shower is dry. Water all over the floor. wtf? He did ‘something’ in the sink. Toothbrush-dry. Hand towels- dry. Soap- dry. what the hell did he do in the sink? Oh well doesn’t matter.

I get downstairs and he is playing his video games, still in his pj’s. omg. Now we’re on a time limit, his ride will be there in 30 minutes. I BULLY him into going upstairs (yes I am a bully when I have to be, threatening to throw the game system out the window) and he finally moves. Thank you lord, cuz now I am starting to sweat.

He’s showering. and showering. and showering. until I have to go upstairs, yell through the door HURRY UP. I go sit on his bed to wait. He FINALLY comes into the room, sopping wet. I lean back on the bed and my hand touches something…gross. On his pillow- toothpaste. Uh..I wont even ask, not worth the discussion, we are on a time limit. I go to straighten up his bed…powder – all over the bed. then I start to notice- there is powder everywhere. We have had this issue before, and I knew right away what he’d been doing. I said- “Logan, why’s everything covered in powder?” he points to the fan. Ugh. Still, no time for this. “get dressed. meet me downstairs. hurry. bring everything you need for school and don’t forget socks”

I go down, scouring cabinets for something for breakfast. The husband is the breakfast man, but he had an early appointment. Damn, not alot to choose from. I find a can of pears and put them in a bowl. He isn’t a huge breakfast eater, but at least its something in his stomach.

I go into the downstairs bathroom, I hear him come downstairs, and sit down at the table. I come into the kitchen, he is sitting there, table in front of him empty. “Uh, what happened to the pears?” he points to the trash and exclaims “I hate it pears!” blah, ok. What else is there? Yogurt? nope. Sandwich? yuck. Cereal? no. “Daddy’s breakfast” Grrrrrr. I talked him into PB&J.

Time’s running out, let’s go let’s go. He takes his time, then decides to clean every crumb off the table in front of him. He moves reeeeeeally slowly, never making eye contact with me, ignoring me completely. He is soo mad I am making him go.

Without a word, he leaves the table, and instead of heading towards the door to leave he is heading toward the stairs. I say “hey! where are you going? we need to get shoes on!” he says “bathroom” ohhh no, are you kidding me? I know what this means and we don’t have time for a marathon bathroom session!

No rushing this kid, in the bathroom or anywhere else. He just doesn’t acknowledge that there is time passing by, that you can actually miss things by being late (like rides!) He has no concept of the clock, or days, or weeks. It’s extremely hard to explain it to him so he can grasp how this all works.

FINALLY I hear him coming back down the stairs. He walks right by me, never acknowledging my existence. I follow, grabbing his backpack, sunglasses and hat. We get onto the porch, “where are your socks?” *shrugs* ARGH, I rush back upstairs and grab a pair. I get back to the porch and he is sitting on a chair, looking away from me. “Let’s get shoes and socks on, come on let’s move” No eye contact. I man handle his feet into socks, then shoes and start to walk away.

He gets up and follows and I feel a hand on my shoulder. I turn and he hugs me. I tell him “have a good time at school bud” and he gives me a kiss on the cheek and walks out to wait for the ride.

Tomorrow, we will be getting up earlier.

To drive or not To drive

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Nice, long feeling, lazy-ish weekend just Logan and I. Doing anything we want, no schedule to meet, feels so nice. We painted, we played video games, we had a visit with a friend, we went to lunch, we…sat in a dead car and listened to the radio.

Yup. A filthy, pine needled covered, hot, messy, frame rotted car. Logan’s pride and joy, and I am guessing- subject of his dreams.

Will Logan drive? That is a huge looming question. There are special driver’s ed programs, even one in our area, that are just for special needs folks and the physically disabled. I believe stroke patients are asked to take this class before getting back out on the road. There is a special license available as well- which is so cool – so if and when the person ever gets pulled over, or God forbid into an accident, this license shows the driver’s disability and I believe has some contact info on it.

So, in reality, Logan COULD possibly drive someday. He totally has the coordination and skills to do so, and I have allowed him to drive my SUV down our driveway. He can back up our lawn mower with a wagon on the back. I cannot do this to save my own life. He can cut the grass in our dog kennel area, and then zip that thing out through the gate with 1/2″ clearance on either side- no problem. This is just something he is naturally good at. I know he could do it.

He has a phenomenal sense of direction. If I say we are going somewhere, and I veer off the course, he says “ahem…” because he knows its not the way. If we miss an exit on the highway, he will call me on it. Pretty impressive for someone who can’t read.

He navigates a HUGE city on one of his video games that I am totally lost at all times on. It comes with a map, which I will drag out, open up, trying to pinpoint my whereabouts and where to go next. He even knows shortcuts! He has memorized every street and corner store, and knows exactly where he is going.

So what’s the problem then? Why not just let him drive? Honestly, I don’t know. Fear of alot of things, but I can’t name a specific valid fear. I know he has it in him. I know he could do it, and do it well, but…I just don’t know? I remember feeling nervous about my daughter driving, and its a natural emotion for a parent of a newly licensed driver, but this is different in some way.

I want more than anything, for Logan to have these milestones like every other kid. Maybe his will be a bit later, but I am working towards the courage to get him there. That seems to be the main thing holding back the plan-(me). This will be a huge – HUGE- step for me. We’ll see….

Negative to Positive

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Life is what we make it. Turn lemons into lemonade. You get what you give- and so on and so on. But for real? Not always so simple.

Truth: Life is tough, life can suck, life can throw some major league curve balls in your direction, and you either have to catch them and deal, or dodge them and let the chips fall where they may.

If you only see the good, you miss the real. If you only see the bad, you are missing your life.

I tend to reference being the parent of a special needs child alot, because this is such a huge factor in who I am, where I’ve been and where I am constantly heading. With an unsure smile, a tell alot blog, and a sense of humor, I trudge through each day, not sure what tomorrow will bring, but okay with that because I have a great support system and I am pretty content with my life.

Every experience we have is relevant. It molds us, guides us, points us in a direction. Don’t dwell on the bad, because it’s brought you to this point, and you’re still here. : ) From almost every negative is born a positive- you just have to look for it. Sometimes its really hard to spot, but even if its small, its probably there. It could be meeting a great friend at chemotherapy. Maybe its re-connecting with a long lost relationship at a funeral (Brenda…). Meeting a cute doctor in the ER? LOL- small things, but present, and should be acknowledged, for they add up.

When I first met Seth, I had a crazy crush on him. I was 14 the first time I saw him, and he wanted nothing to do with me. I remember calling him, and he blew me off. He later told me that he was pretty messed up, and in a bad time in his life and he didn’t want to pull me down that hole. Once he cleaned up his act a bit, he asked me out. I was 15, almost 16 by then. We’ve been through some rough stuff, but we’re still together. If we’d gone out when I was first crushing on him- we most likely wouldn’t have lasted. Negative to positive.

When I found out at 18 that I was pregnant, it was pretty intense. Not an ideal situation, considering I had left home at 17, was living with Seth and unemployed. College? Not in the cards. It was diapers and sleepless nights in my future, and I was pretty terrified. I heard alot of teen mom statistics, and many people were skeptical about kids raising a baby. I waited a LONG time to see a doctor. 16 weeks at my first appointment. I was 18, I was dumb! and looking back I think maybe I was afraid someone would try to talk me out of the pregnancy.  I wore my regular clothes, including jeans into my 5th month. I wasn’t flaunting the situation. Then it got to be impossible, and I had no choice. I looked young, and people stared. There were no 16 and pregnant reality shows to glorify this. People judged and assumed things. There were few ‘congratulations’ if any. I remember going to the dentist and the snotty receptionist. She saw my stomach, and instead of congratulating me or asking when I was due, she said “oh, did you have a big wedding?” I wish I had been quicker on my feet because I would have said something super bitchy just to stun her like “oh, no, I don’t know who the father is”..but I was far to sweet back then. Her reaction, along with others, drove me to want to be the best mother ever. Negative to positive.

In short, by every one’s reactions, I felt my life was over! I was done, all washed up, a teen mom, who would have nothing, my baby would be deprived, I would never amount to anything and she may not either. God did I want to prove them wrong.

At 6 months I had a test that came back showing the baby could have Down Syndrome. This was huge. How would I parent a child with needs at 18? My mind reeled and I didn’t sleep. It was 4 long weeks before they were able to get enough fluid for an amniocentesis and the results were back. She was fine and she was a girl. We chose the name Abigail or Abby, after my great grandmother.

Abby was born and my world changed. Seth and I were able to turn all of the negative into positive by raising a beautiful, happy, healthy, intelligent, caring child. She was the light of our life and we were proving all of the stereotypes to be wrong.

Being pregnant the second time was completely different. I’ve blogged about this before, so I wont reiterate what’s already been said, but I can say, when I found out Logan was a boy, I was stunned. I had almost all female cousins, a sister and a daughter. A boy? What am I going to do with a boy? I had no idea, and wasn’t sure I wanted to figure it out. I wanted another girl! I wanted to use the dresses again! I had a pink carriage, car seat, highchair, nursery. UGH! A boy screws everything up.

Slowly I got used to the idea of a boy, and started to get excited. Okay, I can do this. Now 21, and 3 years of parenting Abby the super child under my belt, I was ready for the next challenge. Let’s go son.

The birth is another thing I have blogged about in some length- won’t go there again- but when Logan was born, Abby got to choose his name (which is on tape and so adorable) and we brought him home and were a happy family. Logan was sick, and very time consuming and poor Abby had no choice but to tag along to appointments and hospitals and therapies- but I really think this helped to mold her into the person she is today.

She is unspoiled, she is one of the most caring, considerate people I know. I can honestly say this, not as her mother but as a person. She’s amazing. She is the best big sister I could ever dream of for him, and her love has helped him immensely. His needs have made her extremely special as well. Negative to positive.

Logan having needs has made all of us different than we would have been. When my kids were small, I never would have dreamed that I would go head to head with schools, doctors, health insurance. I never saw myself as that mom in shining armor, ready for battle. Obviously I want what’s best for my kids, but if someone had told me 20 years ago that someday I would have all of this under my belt in 2012, I would never have believed it. It’s made me stronger, smarter, more assertive, and I have passed that on to my daughter. Negative to positive.

The thing is, we all have ‘stuff’. Some people’s stuff is alot bigger than others, but its there and its theirs. Its a big deal to them. Try to pull something positive from every experience, it helps. Happy Friday to you ❤

LIFE is 10% what happens to you and 90% how you respond to it. ~Lou Holtz

Loss

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How do you explain death to a child? Any child? Logan realizes these people are ‘dead’. They aren’t coming back. They can’t talk to him or hug him anymore. He says “I miss her” and “sad” but he has never cried. He has never said more than those simple statements. I’ve tried to discuss it with him, and he just blocks me out. I know, like any other person, he is processing at his own speed, accepting on his own terms, but its hard not knowing how to help him. I am obviously there to support him, to answer any questions- but he doesn’t ask. He simply says “I miss her”. I wish I could get him into a flowing dialogue of what that really means. How it impacts all of our lives. I reply “I miss her too” and I am hoping that’s enough.
Our family suffered multiple devastating losses in a very quick succession. This is part of the problem. Us adults in the family haven’t even fully processed, absorbed, grieved. I guess that’s my fear- how can I help him if I am not there yet myself?
June2008 my grandfather passed suddenly. Joking, healthy, daily walks, Papa- Mayor of Joppa, gone in an instant, and it rocked our worlds. A silent passing, he died in his kitchen chair of a heart attack.
Left picking up the pieces, to help Grammy cope with losing her beloved Bill after a lifetime of love with him. We struggled.
March2009, 9 months later- Grammy is gone. Just as suddenly, just as shocking. After falling and breaking her hip, she went in for surgery and didn’t wake up. We were devastated, and once again picking up pieces- with our arms still full of pieces from Papa. Walking through a nightmare, trying to wrap our brains around this tragedy. Wondering how we’d cope – feeling as if it were a dream.
August2009, 5 months later- Grammy and Papa’s only son, their youngest child. My beloved Uncle Boo. Gone by his own hand. Grief, guilt, sadness.
Logan does not know the details of these deaths. Just that they are gone. He knows he misses them, and there are photos to remember them by.
Fast forward to this year. Logan’s beloved Nanny- my mother in law. One of the greatest loves of my life and my children’s lives passed in March 2012. This was different for Logan, as she had helped me raise him and his sister Abby. She was there for us always, to babysit, to help give me some respite, to offer advice. Seth and I were allowed to do alot that most young parents could not- because of Sally. We watched her health deteriorate, and it was heart wrenching. Her husband, my father in law Steve, as well as her wonderful daughter Linda, stepped in as care givers for the last part of her journey, while the rest of the family tried to hold it together, not sure where to turn. I tried to keep a balance of keeping Logan involved but away. He had a hard time. He wouldn’t see her for a few days and he would ask about her. We would go see her, then he would be withdrawn and sullen for a few days, trying to process what he’d just seen. It was a tricky balance.
He mentions her daily. I think of her hourly.
I dreamed of Papa last night and it pushed all of this into the forefront of my day. I think I will sit with Logan tonight and have a long talk about these angels. Love you and miss you every single day.
Logan and Nanny

                                                                  

                                                                    Logan and Papa

Through the Fog

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Struggling today. Not really sure why..Just one of those days I guess. Alot has been flying around the web, stories of disabled adults and coping etc. It has put me into a funk. A ‘this sucks for him and all of them’ fog. The nice weather doesn’t matter. The fact its Friday doesn’t matter. Summer vacation, pay day, fireworks tonight, none of it matters on days like this.

My husband is a great support to me. He really does a great job in reminding me that Logan has a fantastic life, a loving attentive family and does alot that other kids his age may not get to do. That’s not what this is about. My sadness is deep. It is always lurking, but usually kept under the surface because I do realize these things- that Logan is a happy kid and living a great life. But the sadness I feel is beyond these facts. The reality is, he doesn’t know any better, so he is happy. But I know better, and I know what he is missing out on every single day.

Nothing anybody can say will ever alleviate this sadness. As a parent, we all want our kids to live a long, full, happy life. We want them to have more than we ever had, and live out every dream. I feel like Logan is being gypped of this, and it sucks. My love for him is so strong, I can literally feel my heart break whenever I start dwelling on it. I try so hard to push it away, but the smallest thing will trigger these feelings.

Watching kids riding their bikes. Walking down the street with a pretty girl. Getting a job. Learning to drive. These are simple, coming of age things, that Logan isnt experiencing. Will he someday? Maybe. He has enormous potential, I realize this. But we have to carefully balance chaperoning as well as tolerance. How much can/will he tolerate? When? When can he be left on his own to do these things? Its a tough call. My fear is he will be bullied, taken advantage of or hurt and he won’t be able to articulate what’s going on. It’s the most gripping, intense fear I’ve ever felt in my life- and it washes over me every single time he leaves me.

So, thats where I am at today. Again, I dont know why. Nothing specific dredges these glum feelings up for me, so I never know when they will hit. I deal, I move on. His smile brings me back, and we get through it. He never knows the difference, and I smile through tears at his courage. I’ll kiss him and he will say ‘yuck mom!’ and I will realize that in that respect, he is a typical teen, and I am back to reality again.