Thursday, January 28, 2010

Entering the technological age

I am proudly a newbie to most techie things. Ipods- don't have one, but want one for the gym. Syncing my Blackberry- no idea how to do it. Downloading on the computer from online- ok. Downloading from my phone- tricky. Connecting cables like TV, DVR and DVD player- impossible.

To show my ineptness, take the following.  I just tried to put a picture of an Ipod Nano on this post and can't figure out how to.

Everyone at my gym has an Ipod of Ipod-impersonator and I sure can not tell the difference. I just want something that is easy to use and easy to download music onto.

I am not the cool mom, I guess, since I can't help my kids with this stuff either.  There are always (usually) knowledgeable salespeople at Staples, right???

Tuesday, January 26, 2010

Why does everyone else seem to think they know more about my kid's autism than me?

Here's a story of a woman named "A".  A single mom with a few kids, including an adult son with autism, she founded Parents for Residential Reform, which is a great group.  However, she has her own set of (mental) challenges and left the Federation for Children with Special Needs in disgrace after abuse and neglect was found in her own family. She seems to need lots and lots of attention... I found out today that a conversation I had with her months ago, when she seemed possibly inebriated and certainly unbalanced, has now turned into a huge issue. Apparently, when Andrew had a screaming fit, I should have called an ambulance. He has autism, I use every behavioral "trick" and technique I know to help him and our family. Sometimes they work, sometimes they don't.  Calling 911 would have done nothing to help calm a screeching kiddo. (Earplugs would have been most helpful!). Yet she was soooo sure that is what would have helped him, she felt the need to tell others I must have made a poor parenting choice by not getting medical treatment. Yikes.

The Serenity Prayer is coming in handy right about now.  I don't pretend to understand autism, or why Andrew has it. I do know he has strengths because of it (numbers, for instance) and weaknesses, but I am confident he is not a "bolter".  He gets highly involved with his imaginary Build-A-Bear world. He loves weather and writing forecasts. He is an amazing child and I love him to pieces. I would never do anything to cause him harm.  One of the scariest days of my life was on Labor Day eve of 2006, coming home from spending the morning with J and friends at the Museum of Science to find him (with his dad) listless and unresponsive and throwing up.  That did necessitate a call to 911 (appropriately so) and it scared me to death.  Thankfully, he got great care from superb doctors at two hospitals and was fine a day later.  Autism effects kids neurologically, I wonder what his brain told his body to do that day....

Back to the Serenity Prayer... being in the middle of a crummy divorce and fight over the children has made me all the more careful to not to anything *wrong*.  We just lost one of the kids friends, there have been so many losses and challenges in our lives as of late, I just wish for some peace and for some understanding of Andrew's autism.  I also pray that Andrew will be able to get whatever he needs to be happier and more centered and calm.

Sunday, January 17, 2010

10 days

With the sad, much-too-soon passing of Bridget, and the (expected) passing of the hospice patient I had taken care of this year, these past days have been long. Add to it some awful things which I won't write about here, and it's not particularly surprising that physically I can't seem to summon much strength to rebound.  It's winter and we live in New England and there are a few dozen bugs going around any one time.  I caught one (or two or six) of these, it seems.  I've been dealing with the same major physical issue of the past two decades, debilitating migraines, and the newer one, and it seemed like a weeknight last week was destined to happen.  I hadn't had so much as a glass of wine, more or less a pill stronger than a Daily Vitamin Supplement, I just got sick with what lots of people get, but I was alone (nope, the cats don't count). And it was like an out-of-body experience...

What actually did happen I have no idea. After being nauseous with what seemed like a violent (but normal) stomach bug for the evening, I woke up on the floor of the bathroom around midnight. I can clearly remember feeling my head (left side) resting on something hard and slowly coming to and realizing I was on the bathroom floor with an egg sized, bleeding lump on my forehead, and vomit covering my pajamas. Lovely, huh?  I must have gotten up at some point because the next thing I can recall is sitting with my head leaning against the wall, pain now coming from the right side of my head.  I am sure I passed out due to being dehydrated from throwing up (have since pretty much confirmed this thanks to my neighbor the ER doc), but have never been so scared because for the only time ever I had no idea what had happened to me. Yikes! Living by yourself sucks. Sorry, not in the mood to hear how great it *can* be.

I probably staggered back to bed (and did wake up the next morning with a bucket next to the bed!).  Sure, I could have gone to an ER (not sure how I would have gotten there as 911 seems like an over-reaction and I am ER-phobic) and been told I had a concussion, but that much was obvious to me. My vision wasn't blurry, I could keep liquids down, and, with a shower, I felt somewhat human.  Work and appointments happened, but I never quite recovered any energy and continued to feel "blah".

It's ironic, my kid who has a mitochondrial disease, where she can catch a bug easier than most and get sicker because of those germs, isn't the kid I had to choose to not see Friday (as I had to the previous two times because I was throwing up and possibly contagious). I had to get the other kids, who all seemed to be coming down with something themselves. So we were the *sick family* this weekend. We slept late, we hung out inside, drank lots and lots of water, and watched videos on demand. We did some art projects and talked a lot about Bridget. All the while, my stomach has not settled and continues to make noises I didn't even know it could make (the little girls are somewhat amused by this).

Moms (and dads) need to take good care of themselves so we can be strong parents to our kids. Yet, I don't think that a few microwave pizzas and sandwiches in place of cooked, more homestyle meals, did any harm to my munchkins the past few days either.   Sarah is talking like a frog has taken residence in her throat so my guess is she is the next one to fall full victim to this bug-from-hell. Emily is running a close second, however, and got little sleep last night as she had lots of nightmares :-(  and was on the cusp of a fever.  And, my little boy is just utterly miserable in every sense of the word.

The week begins anew, hopefully a better 10 day period starts soon :-)

Sunday, January 3, 2010

A tough life lesson

How do you explain death to a 9 year old?  There have been losses of important people (Lynda and Whitey) in my life. But, while they may have cared about my kids, my children never felt a real connection to them. Their losses were very painful for me, and the kids saw the grief and heard the church-inbred dialogue of "you go to heaven when you die and you become an angel".   Even the many years ago when Whitey's daughter Vickie passed from leukemia, I didn't buy all that propaganda. When it was her father whose coffin I stood over and put a flower on in the cemetery, it didn't make any more sense than it had all the years before.

Our 11 year old friend Bridget was diagnosed with a brain tumor 4 years ago. She is in her final days of her battle. She is at home, receiving hospice care, and not in any pain.

Her family is awesome. We met them through the Shamrock Preschool in Woburn. Bridget's mom and I hit it off right away- it helped we were the only other moms of 4, therefore very strange commodities at the preschool. I *think* all our kids also had the one preschool teacher there I think is fabulous.

Bridget and her little brother became buddies with my kids. We were never  super-close friends with her family, but we did go to the zoo, visit playgrounds, and have playdates together. Julia's other "best" preschool friend, Jenna, was friends with Bridget and the three girls got along beautifully.  I have pictures of Bridget celebrating Julia's birthdays and Julia celebrated at least one of hers, too (making pottery!).

When Andrew was in the midst of getting his first comprehensive neuro-pyschological exam, it was Bridget's mom who was my rock. She worked for the doctor and was a God-send to me at a time when I was still trying to understand why God had "given" Will and I a child with autism. Having a little kid who is as cute as a button, but doesn't really talk or act like other children (I think Andrew was 4?) was not an easy walk at that time especially.  Cheryl was so positive and made me realize other kids liked Andrew just fine, her Bridget among them.

Bridget and her fight has brought our community together in a million different ways. My children knew her, loved wearing their "Bridget's Buddies" plastic (a la Livestrong) bracelets.  I would run into her dad at our local Dunkin Donuts often and get updates from him. We walked, virtually that is, on the Jimmy Fund team named in her honor. Bridget was someone we knew once and continued to pray for and cheer on.

Emily has been taking this hard. She wanted to write a message on the website set up for Bridget and maintained by her mom.  She wrote the sweetest thing. Alongside messages from her former preschool teachers, friends of Bridget's from town and from camp, many other patients and families who deal with pediatric brain tumors, and family, Emily wrote a message in pink because she thought Bridget would like it.

I don't understand why Bridget is dying. I don't understand why there is not a cure for this disease and why children have to suffer. I am struggling with how to talk to my children about all of this. When Bridget does become an angel and is no longer suffering here on Earth, how will E understand that? Nevermind, how I am going to tell J, already so fragile.

Life is so short, the best advice I can give my kids is to be kind and always help others and to try to make amends if you fail.  Certainly, those are words I have tried to live by and the "making amends"  part can be hard. All we can do is live in a way which we can be proud of. I think Bridget's kindness, strength, and joy personify the best here is in humanity and we will miss her very much. And there is no Bible verse which can help me understand any of this.

Update: Bridget earned her "angel wings" early this morning (January 14, 2010).  My thoughts and prayers go out to the Sweeney family, her mom and dad, and her three siblings especially.