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Markers of Time

March 30, 2011 in Featured, From Julia by Julia Roberts

I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.

It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.

One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.

I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.

A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.

A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.

A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.

What are two of your time markers?

 

How do I deal with meltdowns in public?

October 1, 2010 in He Said/He Said by Celebrate Calm

Question: How do I deal with meltdowns in public? How do I deal with strangers making comments or judging me?

Calm Dad Says: Remember that as a parent, your primary responsibility is not how your child behaves, but how YOU behave. The truth is that no matter how great a parent you are, you cannot always control your child’s (or spouse’s!) behavior. But you can always control your emotions. The quickest way to change your child’s behavior is to first control your own.

If you react emotionally out of embarrassment or guilt, your tension will escalate the situation. How many times have we yelled, “I don’t have time for your tantrum right now!” as if our kids are going to glance at their watch and say, “Oh, do you want to reschedule, Mom?” Put out the emotional fire and be the calm, immovable rock they can count on.

If you allow another person’s comment or opinion to cause you to snap at your kids, you are giving some stranger power over your emotions and relationships. Do not give anyone that power. You don’t owe anyone an answer. In the end, the relationship with your child is most important. And when your child sees that you can remain calm and emotionally available to them, even when others are giving dismissive glances, they will feel safe and secure.

Calm Kid Says: When I’m upset and freaking out, it’s usually because I’m feeling out of control of the situation. I don’t need my parents freaking out. That just makes me more upset because now no one is in control of themselves, and it’s just a big scream-fest or threat-fest. When they are yelling or just glaring down at me, it’s not safe to even apologize. What I really need when I’m upset is for my parents to model calm and lead me into a calmer place.

I remember when I was little and I’d throw a tantrum at the playground in front of all the other kids and parents. My Dad would sit down, cross his legs and just say, “You can throw a tantrum if you want. If you do, do it with excellence. But if you want to figure out a better way to deal with feeling disappointed, I’ll go swing with you and we can talk about it.” That helped me to know there was a different way and he wasn’t going to go ballistic on me. And that’s why I trust him when I have teenage issues.

Celebrate Calm Founder Kirk Martin and his son, Casey (17), have trained over 100,000 parents, teachers and kids how to control their emotions through their newsletter, radio show and workshops. Sign up for their newsletter, say hi and learn more about their family-friendly programs at www.CelebrateCalm.com.

Op Ed: NY Health Insurance Bill Murky?

June 16, 2010 in Special Needs News by Admin Dawn

From the Age of Autism blog comes this op-ed:

We understand that A1037a/S70000b, the Autism Speaks endorsed insurance bill for autism, is likely to pass in New York. It's verbiage requires that any approved therapies must be “evidence-based, clinically-proven, and peer-reviewed,”  a standard used in no other state and for no other health disorder under New York law. That sounds a lot like ABA and pharmaceutical drugs, and drugs are already covered for most of our kids. Does this mean GI testing and treatment is excluded? What about immune-related testing and treatment? What about occupational therapy, speech therapy and physical therapy?

Click over to Ask Why Autism Speaks’ NY Health Insurance Bill Is So Murky In Terms of Care to read the whole thing in and weigh in with your opinion.

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