Monthly Archives: August 2012

Junior year goal- learning to write our name

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As the first day of school rapidly approaches, I’ve been thinking more and more about how our school year experience differs from the typical parent/child school year experience…
 
There’s so much excitement- back to school time! Parents rushing around filling ‘must have’ lists of school supplies, kids making wish lists for school clothes, teachers readying classrooms.




I’ve done none of this. Logan will be going into his junior year of high school this year- but there were no trips to buy supplies, no school clothes picked out. I’ve tried to go through the motions, simply to give him this back to school feel fun, but he just doesn’t care.


Being in a special education program makes our preparing a little bit different. Our concerns all revolve around IEP meetings, evaluations, and sadly, budget cuts. We worry if a favorite aide will be leaving, a bus driver will be switching routes, a best friend will be transferred. Any of these can be disruptive in his progress.

He doesn’t care too much about what he wears, so I buy him (cool) stuff all throughout the year. He’s always got several drawers stuffed with choices, and comes up with his own combination and always looks great. —> see?
 
His school supplies are basically a pencil, and a notebook that will serve as a communication book, passed back and forth between the teacher and myself.

Once school starts, I start being the detective- searching for clues, picking up on leads, is anything wrong? Did the day go okay? Is the teacher not telling us something? Its a stressful way to live. We have been extremely fortunate with his peers, as well as the staff he’s worked with over the years, and there have been few issues, but I still worry and wonder.


 
Logan’s accomplishments this school year are likely very different than your child’s. While most parents are starting to look for colleges, attending football games or driving lessons- our junior year’s goal is to learn to tie our shoes, and write our first and last name.

 
(although we did do this!! Logan’s driving lesson)



 I try to share Logan’s story with as many other special needs parents as I can, simply because I want them to know it will all be okay. You might have a newly diagnosed child, and be struggling to wrap your brain around the things that are going to be different. Yes, its definitely a very different parent/child experience- but you can do it. Your child can be just as cute, cool, in style, and in some parts of their life, independent. He/she can be popular, accomplished, and loved by their peers.



Your kid might have quirks you worry about- well Logan loves to collect ponies and has washed my dishes with Hershey’s syrup- ITS OKAY! in the grand scheme of things, these are not a big deal. Don’t be ashamed of their odd habits. Its part of them.

 



Don’t ever give up and don’t ever back down. Enjoy these years though- they do fly by. They may seem really tough now, but before you know it you’ll be looking back in awe, saying wow, how did we ever get here? Make “here” a good place to be. Treat your child as abled- focus on what they CAN do, build their confidence.
 

Charisma!!

Logan KNOWS he is charming. He knows he is adorable, funny, and likable- and he totally uses that to his benefit. I love that he has figured this out. He may not speak clearly, he may not read or write- but he has charisma and he flaunts it. People want to root for him, they want to look out for him. You only get one shot at your life, and one shot at making your special child’s life matter. Just because he/she may be considered ‘disabled’ doesn’t mean ‘discounted’. Your child has just as much to offer this world as any other child.
 
It’s a long, bumpy road- its not always a fun ride- but at least we are along for the ride. So many parents have lost their little ones, so don’t take a single day for granted, even the toughest days. You may have had dreams of a football star or a ballerina- and yes, you may have to alter those dreams, but you can still make  your child feel like a star. Logan is the star of my show- and he knows it.
 
If you’re struggling with a newly diagnosed child, and not sure what to do next, my inbox is always open. I’ve been down a lot of the same paths as some of you. I’ve felt most of the feelings you might be experiencing. Its a lonely road to travel alone- so reach out. I’d love you to say hi.

Let them know

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I just ordered funeral flowers- again. I have spent more time trolling flower sites and waiting in calling hour lines, and spent more money on funerals in the last 6 months than I have in the last 6 years.
 
Losing people we know is jarring. It jolts you awake, makes you feel out your own vulnerable spots, your unprotected areas- but really, there is nothing we can do to stop what’s coming. Coming to this realization is like getting cold water  in the face. What do you mean its coming? I have a family, a life, a job, I have shit to do.
 
Fate is….well, it is what it is. It doesn’t care if you have shit to do. It doesn’t care that you have laundry to pick up at the dry cleaners, or a floor to mop, or a presentation due at work on Friday. It doesn’t take into consideration that you have loving family, kids who need bedtime stories, or dogs that need Frisbees thrown.
 
It swoops in, does its dark dance, and you’re gone.
 
Just. Like. That.
 
So here’s the thing about that. You’re here now. Make it count- make it MATTER. Don’t take your time, your talent, your abilities, your intelligence for granted. Make a mark- send a message – leave a legacy. Be the best person you can be while you’re here.
 
Tell people that you love them, that they matter. Let them know how they’ve impacted your life or changed your world.
 
Don’t be caught up in the rush, take a breath and step back. Look at your life and the people you have surrounded yourself with. Do they know how you feel about them? Does your child know how proud you are? Does your parent know you love them? Does your spouse know you appreciate them?
 
We can put a hundred safeguards in place- a safety net to catch our family ‘in case’. A savings account, a life insurance plan, a will. These will help ease the financial burden if you’re gone- but do they know YOU LOVE THEM? Will they look back at memories and only smile?
 
I’ve lost many, many people I’ve loved dearly. Of course there are moments I look back on and think “I wish I had”…but overall I know they loved me, and I know they felt loved by me.
 
Don’t let another moment pass by without telling them- do it today. We just don’t know what will happen tomorrow. Show your love. : )

Happy Birthday AbbyGirl

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When I got pregnant with Abby I thought, okay..I guess I can do this. I know how to change a diaper (kinda)..I can totally do the little clothes and pushing around in a carriage stuff. I wasn’t working, so I didn’t have to worry about that..Money would be tight, but I always liked Mac & Cheese and Dinty Moore. Yea, I can do this.

I’ve blogged about some of this before. I was 18, unmarried, no money. But none of that mattered all that much to me at the time. I was dreaming of little shoes and thinking of names- the IMPORTANT stuff! (remember I was only 18)

I see these young girls online that are posting “I’m pregnant!!” and eagerly sharing ultrasound pix. (inner groan) They just don’t know what they’re in for..Honestly I feel bad thinking this. I just want to scream WAIT! If you just wait, you will be so much better off! A better prepared parent, you’ll be ready, you’ll be grown up! I mean, I was that teen mom. I was clueless. I was broke. I was immature- but I pulled it off, and I did it very well, Abby turned out fabulously. So I shouldn’t judge these girls. But I really can’t help it, and I am so glad that Abby did not repeat the cycle and get pregnant. Life is tough, and I think having a kid very young makes it tougher, for you and that baby.

So anyways, I was pregnant. Things were moving right along..until maybe 18 wks or so. I had a test come back ‘low value’. I remember this day distinctly. I was home alone, and the phone rang. It was my obstetrician telling me that I needed more tests. The test had come back low, and this could mean Down Syndrome. My world flipped upside down. All of these things I had thought about didn’t matter at all. I was 18- could I handle this? Could I parent a baby with Down Syndrome?

Now, obviously had this happened today I would say no sweat, bring it on, its still my child. But this was long, loonggg before I had any experience with children with special needs. I heard Down Syndrome and I thought severely challenged, possibly even dying, I really had no idea what it meant for my baby. I called Seth at work and sobbed into the phone “the doctor called”..I remember him saying “what? the dog got hit?”

They scheduled me for an amniocentesis– which terrified me. Again, if this were today, I would refuse and just take my chances. I went in, and there wasn’t enough fluid to draw. They sent me home to drink more, and see if there would be enough amniotic fluid to draw out for the next time.

3 days later- same thing. Another 3 days- same thing. This went on for a couple of weeks. They were finally able to do the amnio. It wasn’t pleasant.

By the time I got the results of the test, I was 24 weeks pregnant. I loved this baby, and it didn’t really matter at this point. I just wanted it to be healthy. The results would also give me a 100% gender determination.

They called and said “Your daughter is totally fine”.

Joy, elation, umm, totally freaking psyched comes to mind.

We chose her name, and that was that. She went from ‘the baby’ to ‘Abby’ and we started to really prepare for her to arrive.

Today she is 20. I look back at the last 20 years in awe that it’s gone so fast, and that I did it. I grew her, I taught her, I nurtured her, I loved her, I raised her. No job, no diploma, no marathon, no Oscar can make you feel the same way. To look at your child and know YOU DID THAT— unbelievable.

Happy Birthday AbbyGirl. You are the light of my life, the stars in my sky, and the peanut butter to my jelly. I didn’t always know if I was doing the right thing, but I always tried my best, and above everything else, I always loved you. I would kill for you, die for you, walk through fire, swim through sharks, even hold a spider for you. You are one of the best things that has ever happened to me, and I would do it all again in a heartbeat.

Fate

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I’ve received a very heartfelt, emotional letter from a person who follows my page. She is in a wheelchair, from an injury suffered in an accident 4 years ago. Being in the chair has changed her in many ways, but one thing it has done is given her a different view of her life. One quote (taken with her permission) – “I never stopped to watch the things around me, I was too busy doing everything I thought HAD to be done. I wasn’t stopping to smell the roses, but I am now. It’s almost as if it were my fate.”

This is an amazing outlook, and we can all learn something from it. Another page follower wrote to me about her infant son needing a heart transplant, and within 26 hours of being on the waiting list, he got his heart. She said “It has been a hard but amazing journey! I honestly wouldn’t change anything, he has taught me to live life and to love right now.” Another inspiring outlook (I love these stories!)

I have to say, I am a big believer in fate. I feel that we are all on a journey, and every step, decision, extra minute of sleep, dollar spent, red light- alters the path. 

As a young mother, I hadn’t yet realized my own fate. Struggling financially, not getting much sleep, just trying to be a good mom, these were the things I focused on. When Logan’s situation became the focus of my life, I got wrapped up in that. I did a lot of wondering ‘why me? why him? why us?’. 

Now I realize, why not us? This life I’ve been given is something I was meant for. To be a parent of a child with needs. I love it. I’m good at it- no the hell with that, I ROCK AT IT! And it is exactly where I am meant to be. I never would have dreamed this would be where my path would lead me. 17 years ago I knew nothing about caring for a child with any sort of needs. The thought of dealing with specialists, therapists, school meetings? Ha! Not me! .yea well …Surprise! And guess what? I did it, I’m doing it, and I will continue to do it. I surprised myself.

People often look at a situation they are in and they feel depressed, or overwhelmed. I say, look around, and you will find someone with a far worse or more difficult situation than your own. I take Logan into Children’s Hospital and I see some of the strongest parents and kids on this planet, fighting things I can’t even wrap my brain around facing. It can ALWAYS be worse. 

 Don’t dwell on where you think you should be. Don’t compare yourself to your neighbor. Their journey is different than yours. You have taken different paths, and you have a different happiness. You may not realize yours yet, but in time it will become clear.

I believe Logan’s fate is to spread his light. He can smile in the face of adversity and I admire that in him. He’s taught me a lot about tolerance, patience, and acceptance. We can’t change certain things, and we need to be okay with that. We waste so much of our lives wishing for things, and not looking at all the good around us already.

Live your life. Love what you have. Don’t spend too much time worrying about what comes next- you got this.

Hope

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I have been passed the baton in the ‘Hope Blog’ relay from my blog buddy Sooperdad. His story is great, go check it out.

Hope. Hmm. I know quite a bit about hope actually. I had big hopes, huge dreams, high expectations for what life with kids would be like, and for what their adult lives would be like. I had my daughter Abby and the plan was on track- a little early (I was 18) but on track. She hit every mark, excelled in her development and was living up to everything I had thought having a little girl was about. I thought she was an angel, a brilliant, blond little gift, and I was so lucky to call her my child. We had tons of fun, and I enjoyed every moment spent with her for 3 years- and then I had Logan.

Logan started getting sick around 10 days old or so, and the crazy-not-expected-routine began. Abby was pushed to the back burner and the focus adjusted onto him. As he got older I not only saw my hopes and dreams for him sliding away, but I worried that all I had hoped for her was vanishing as well, simply because I was afraid I couldn’t give her the attention she needed to fulfill all of these dreams.

I would lay awake nights hoping- and when I say ‘hoping’ this was more like pleading, with who I am not quite sure, but I did it. I pleaded, I prayed- and I am not a religious person. I begged, I bargained, I promised to do everything in my power that I could if something, somehow, could just let these kids fulfill all that I had hoped for them.

You see, everyone looks at the child in the family with the special needs or medical condition and they focus on how hard it must be for him/her and his/her family- but take a look at these siblings. Like Sooperdad’s blog about that brother and sister- my daughter often stepped up to the plate for her little brother. She sacrificed repeatedly often missing out on things or doing homework in a doctors office waiting area. We tried to balance, but if Logan needed to be in Boston at the Children’s Hospital there was no way around it. She became friendly with all of his therapists, often joining in on play therapy. She knew all of his teachers and aides, and was a fixture in his classroom, later in the middle school even teaching all of the special education kids how to DDR (dance dance revolution)! I heard over and over and over again how special and lovely Abby was, and how lucky Logan is to have her as a sister.

All of my original hopes have not been realized, but I do have to say, many have come to fruition. Logan isn’t quite there yet, but he is well on his way and he impresses me daily. He has come much farther than I’d anticipated, and I’ve seen him make huge gains. At one time doctors and therapists weren’t sure he would ever develop enough core strength to walk. We were told he may never speak. He was so small for so long, they didn’t know if he would be sickly small forever. He has proved us wrong over and over.

My daughter, though missed out on some things, made the best of the situation she was in. She learned compassion, dedication, and a fierce and loyal love. She’s helpful and kind, and I am extremely proud of her.

So, as far as hope goes, I’ve done my fair share of hoping- and I’ve had my fair share of my hopes being dashed, but I’ve also learned to adapt that hope, and accept something that’s not lesser, just simply different. My hopes may have changed drastically since I was that new mom with football dreams for my son, but I kind of like my new hopes I have now. I’ve learned some valuable lessons on what is truly important. In my home success is not based on money or fame- its based on personal gain and growth, and I am beyond proud of my kids and what they’ve accomplished, and my one true ‘hope’ is that they be happy in anything they do.