A Special Child Care Search

Jun 23, 2015 by

With summer officially here, if parents haven’t already done so they will soon be looking for ways to keep their kids entertained for the next two and half months. Luckily (or not) for us, with three kids under the age of four, we’re not really at the stage of looking at summer camps just yet. Instead, after four years with the same daycare we found ourselves in the market for a new daycare.

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A Letter to New Special Needs Parents

Mar 20, 2015 by

Listen to me. (Err… read me.) It is okay to feel overwhelmed. It is okay to not think about it sometimes. It is okay to think about it all the time. This is something that you have to grow through just as your kid does. It takes time to come to terms with “special needs.” Nothing anyone can tell you will be the magic key to getting you through it easier or faster. There will be days that suck for sure. Way more in the beginning than later. But there WILL come a time where you realize your kid’s life IS normal. She IS normal. YOU are normal. Your family is NORMAL. It took me a solid year to not think about Down syndrome every waking second of every day. It took me two years to not wake up with it being the first thing to enter my brain.  I know she HAS Down syndrome and that she will never, ever grow out of it.  But it isn’t what defines her. When I look at my kid, I see my KID, not a chromosome count.  You’ll get there.  I hope one day, the rest of the world will, too.

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Sometimes I even surprise myself

Jan 29, 2015 by

A few months back, I was fortunate to attend a panel presentation featuring four locals who are part of the transgender community.  Three were transgender individuals and another was the mother of a grown child who had recently begun a transition.  Their message was fascinating and here’s why: it’s exactly what I’ve been trying to convey to people about my daughter for more than four years.

They didn’t want special treatment (whether positive or negative) they just want to BE.  They weren’t looking to be pitied. Sure they’d had struggles but who hasn’t?  They were looking for some degree of understanding, acceptance, and just the ability to go about their lives. Isn’t that really just what everyone wants? Because they are people, just like everyone else.

* * *

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“First…then:” Parenting in Binary Code

Jan 19, 2015 by

We learned the “first…then” behavior strategy from our daughter’s birth-to-3 team.  At the time, the goal was simply trying to help our daughter get a sense of time and order.  “First you go to sleep for a nap.  Then, you can play more.”  We used social stories, which are essentially a tool to convey any routine, such a potty steps, the line-up of her preschool day, or what a Saturday, which is different every week, might look like.

social stories

Over time, “first…then” also became a way to get both our children to take part in some of the less desirable parts of a household.  “FIRST, we clean up from the puzzles, THEN we can bring out the books.”

First… then can also be a pretty subtle bribery tactic.  “First, we have our protein.  Then we can have dessert.”

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When Should You Medicate Your Child?

Jan 13, 2015 by

sage reading

As if I knew the answer to that question, right?  I have Googled this very question, paraphrased in various ways, more than once.  Heck, perhaps that’s how you landed here now.   If so, like you I have wondered and struggled and suffered through deciding.  I have sat across from my wife, daughter, her pediatrician, teachers, and mentors in tears, wondering how to best help our little girl.  As a social worker who started her career working with kids, and often with kids on medication, I was not the biggest fan.  I saw kids over-medicated, diagnosed too soon or misdiagnosed.  I watched parents pressured into putting their kids on medication to stay in school.  I saw the helplessness and pain in parents’ eyes as they struggled with the very same decisions.

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