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Autism: My Child’s Reward For My Specialness

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A story that’s trying hard to be a feel-good tale is doing the rounds on Facebook. A family that includes a special needs child was eating out at a restaurant, and the special needs child started to get a little boisterous. Mom was feeling self-conscious, knowing that her son’s behaviour might be bothering other diners, but then a waitress approached the table and said that a kind stranger was footing the bill for their meal.

So far, so good, right? As the parent of a child with autism, I am touched that someone would extend such kindness to a special needs family. But the story doesn’t end there. The waitress also handed the family a note from the stranger. The note said, “God only gives special children to special people.”

While many people are going on about how sweet and kind all of this is, I am blown away by the presumptuousness within the message. Yes, paying for the family’s meal was incredibly nice, and I have no problem with the gesture. It’s the note that I take issue with, and not only because of the implied assumption that everyone believes in God.

My son was diagnosed with autism at a time when a lot was wrong in my life. My relationship with my husband had hit a rocky patch, our finances were in complete meltdown, I was going through postpartum depression, I was struggling with the loss of my father… There was a lot going on.

During this terrible time, while I was trying to adjust to the reality of autism, someone told me that God never gives us more than we can handle. If that is true, how do you explain the fact that there are people who reach the point of being unable to cope, who feel so desperate that they decide to take their own lives? How do you account for the mothers who feel so overwhelmed and lost that they either abandon their children or surrender them to social services? What about the people who lose their homes, families and jobs because they feel that they can drown their problems in drugs or alcohol?

God only gives special children to special people?

The implication here is that autism and other disabilities are some kind of reward. What kind of God would do that?

“This person is so great and so awesome and so special that I am going to give their child a disability that slows down their speech, slows down their learning, reduces their chances of independence, and makes them scream in frustration when they cannot express themselves.”

Call me crazy, but that’s one messed-up reward system.

Here’s the reality: there’s nothing special about me. Yes, I’m a good mom. I provide my kids with the necessities of life, I shower them with love, I advocate for them, I try to instil them with confidence…

But I also get overwhelmed. I have days when I yell at them too much. Sometimes I let them watch as much TV as they want because I’m too tired and fraught to entertain them myself. Occasionally I’ll buy them junk food because I don’t want to cook. There are times when I get impatient with my son’s autistic behaviour even though it’s not his fault.

In other words, I am just like 99.99999% of other moms: I do the best I can with what I’ve got, and I accept that I will have my good parenting days and my bad parenting days. I’m not any better – or more “special” – than anyone else.

I didn’t get my child with autism as a result of God deciding that I was special. I got my child with autism through an accident of genetics.

I love my son more than life itself. Whenever I see the look absolute desperation in his eyes when he’s having a meltdown, my heart breaks for him. I ache inside when I think of the fact that he doesn’t have friends because he doesn’t know how to, and I constantly worry about whether he will be OK in the future.

I don’t believe in God, but if I did, I’m pretty sure he wouldn’t make a child go through life with a disability just because the child’s parents were “special”.

This is an original post by Kirsten Doyle.

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Starting A Snowball Effect

From time to time, I find myself asking the following question: Why am I here?

Sometimes, when I am in a particularly bleak frame of mind, this train of thought leads me straight into a downward spiral, and I then have a hell of job trying to climb back out.

Other times, though, I can ask this question and come up with an answer (or answers) that make me feel – well, good about who I am. Because, you know, I think I’m quite a nice person. Not that I’m the type to blow my own trumpet or anything.

I am here to make a difference, to help make the world a better place. If my presence on this earth changes just one life for the better, then I think that maybe I’ll have done OK. I like to think that my immediate circle – my family and my close friends – are enriched by the fact that I am in their lives.

I try to instill positive values in my kids, to set them up for happy and productive lives in which they, in turn, can have a positive influence on those around them.

I am a strong supporter and advocate for the autism community. I run a race every year to raise funds for autism services, and I try to spread awareness and acceptance for people like my beautiful boy George. I also try to ease James’ path as sibling to a child with autism, to allow him to balance care and concern for his brother with his own need for independence and identity as a human being in his own right.

As Gerard’s partner, I try to make a difference in the lives of the youth in our community. I support Gerard in his endeavours to keep teens away from a life of crime and gangsterism, to steer them into avenues where they can have a more positive outlet for their creative energy.

When someone I love needs advice or support, I try to be there for them as much as I  can. I have a genuine love and concern for my family and friends, and it gives me joy to help them through troubled times.

When a friend’s baby dies, there is very little I can do to ease the pain, apart from making sure my friend knows I am there, and offering whatever support I can. There is no way to get anything positive out of that kind of tragedy.

Or… is there?

On January 20th, I donated blood for the first time, in honour of Capt. Snuggles, an eight-month-old baby who was fighting for his life. Four days later, I wept – even sitting at my workstation where other people could see me, I openly wept – as I read the devastating news that Capt. Snuggles had slipped from this world into the next.

A couple of weeks later, I started pondering the question: if I started the chain of events, how many people could I get to donate blood, in memory of Capt. Snuggles, over a five-day period? After running my idea by Amy, the brave, brave Mom of Capt. Snuggles, and after receiving her blessing (and some really valuable advice), I am now officially launching the campaign.

The Captain Snuggles Blood Drive.

From 9:00 a.m. Eastern Time on April 4th until 8:00 p.m. Eastern Time on April 8th, I am inviting everyone who is medically eligible to roll up their sleeves and give a unit of blood in memory of Capt. Snuggles. No matter where you are geographically located, please consider going to your local blood donor clinic in the first week of April to start in motion a sequence of actions that could save someone’s life.

I am relying on word of mouth here, so I need everyone’s help. Please spread the word. Repost, reblog, tweet, talk – please do whatever you can to let the people in your life know about this drive. Let’s work together to create a snowball effect that would make actual snowballs look like lazy amateurs.

Together, let’s save lives.

Currently, there are three ways for you to sign up:

  1. Respond to the Facebook event that has been set up.
  2. Send an email to captsnugglesblooddrive@gmail.com
  3. Leave a comment on this post, but make sure there is some way for me to contact you.

If you sign up, you will receive regular news updates and information, and I will even help you find a blood donor clinic convenient to you. Once your donation has been made, I will ask you to let me know, and you will be added to what will hopefully be the giant number of people who made a giant difference in honour of an incredibly brave, tough baby.

This blood drive is not going to diminish the tragedy of Capt. Snuggles’ plight, or the grieving of his family.

What it will do, though, is this. It will allow Capt. Snuggles to live on through the good that we will do for other families who need life, who need hope.

Together, let’s see what difference we can make.

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Making The Giving Worthwhile

On Thursday morning (at 11:30 a.m. EST if anyone wants to be that precise) I will be donating blood.  I am greatly looking forward to it, and if you’re reading any sarcasm in that sentiment, none whatsoever is intended.  I really, genuinely, truly am looking forward to sitting in one of those reclining chairs while a unit of my blood is transferred from my body for the purpose of saving a life that needs saving.

I am excited to be doing this.  I am excited to be doing something, giving of myself in some small way, to help other people.

The last time I tried to donate was about twenty years ago.  I passed the initial iron test and got settled in one of the reclining chairs in the clinic.  The entire process from that point on was an absolute disaster.  The nurse – a kind, gentle soul who felt terrible about the pain she was putting me through – had to poke multiple holes in both arms before she could get the blood to flow.  When it did flow, it was painfully slow, and when about third of a unit had been taken from me, I passed out. I was sick for days after that, and when I went to my doctor, he advised me not to donate blood while my health was in such a fragile state.

It just wasn’t the right time for me to donate, back then.  There was a whole mess of crap happening in my life, and the stress of it all took its toll on my health.

Now things are different.  I am fit and healthy.  I am not under constant stress, I sleep as much as two kids and a hectic schedule allow me to, and my running regimen pretty much forces me to eat more or less healthily.  I am ready to put the memory of my last donation attempt behind me and try it again.  I am confident that the results will be far, far better.

I’m doing what I can to make sure, though.  My main objective over the next few days is to ensure that my blood is whole and healthy, that it can indeed be used to help someone who needs it.  If I show up on Thursday to give my pint of blood in honour of Capt. Snuggles, and they turn me away because my iron is too low, I will not be happy.  I have to do whatever I can to make sure that does not happen.

I share these tips for the benefit of anyone reading this who might be interested in donating blood (Michelle, maid of honour and friend extraordinaire, has already said that she will try to join me on Thursday).

  • For several days prior to donating, eat foods rich in iron.  Breads, meat, fish, chicken, fruit, raisins, nuts, dark leafy greens.  This is especially important for the ladies, whose iron levels tend to be less stable.
  • Be aware that many foods rich in iron are also high in fat, and a high lipid content can also result in you being turned away.  For 2-3 days before you donate, focus on a low-fat diet, but keep on consuming iron-rich foods that are low in fat.
  • Hydrate, hydrate, hydrate.  If you don’t drink enough fluids, the nurses will have a hard time finding your vein, and once you are hooked up, your blood will flow slowly and the process will take longer.  Limit sugar and caffeine in your beverages, since these slow the absorption of water.
  • Get enough sleep!  This will not necessarily change the quality of your blood, but it will make your recovery a lot easier.
  • The day before, load up on iron-rich foods, but ones that are low in fat.  Drink lots of water and go to bed early.
  • The day of, have a good breakfast so that you have the calories to start regenerating your blood.  Eat fruits with a high water content, and drink water and energy drinks (this can also give you one last iron boost before you go).
  • Try to eat either a meal or a snack right before you go.  You don’t want to donate on an empty stomach.  Take a bottle of water with you.
  • After you’ve made your donation, sit down and rest, and have a snack to raise your blood sugar.  Many clinics provide juice and cookies – if you don’t have a snack of your own on hand, accept the juice and cookies!
  • Light to moderate exercise several hours after you donate will help raise your energy levels.  I’m not talking about a five-mile run, I’m talking about an easy walk.

Many of these are good inroads to a healthy lifestyle, and following these steps will help make your blood healthy and vibrant.   If you are medically able to donate blood, I appeal to you to please consider it.  It really could be a matter of life and death for someone.

I am humbled and kind of ashamed that it has taken this – the life-threatening tragedy of a little baby – to spur me on to do this.  Ultimately, it is Captain Snuggles saving lives here, because he is the reason I am doing this.

Click here for Amy’s latest update on Capt. Snuggles.