Don't forget about yourself

By Jessica Balestrin

 

Hey you. Yes you, with a 3-day-old hair-do and last night’s formula on your shirt.

When was the last time you took care of yourself? When was the last time you were able to pause between breaths, feel your feet on the ground and truly relax?

As special needs parents, we often push ourselves to our physical and emotional limits. Caring for a child with complex needs means our own needs come second. Always.

We’re fighting battles everyday: arguing with funding and insurance agencies, seeking out the best treatments for an increasing list of diagnoses, juggling appointments, all while trying to let our kids be kids.

Oh, and let’s assume you have a house to manage, maybe a job and an extended family to care for. Who has time for self-care, right?

 

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Finding your way through the darkness as a couple

By Julie Keon

My husband, Tim, and I celebrated our 17th wedding anniversary in June. This is a day of accomplishment and reflection especially as the years pass and we are faced with challenges many couples will never have to face. 

I can close my eyes and travel back in time to the 28 year old woman I was waking up on our wedding day and ready to embark on this big adventure of marriage. I had spent months writing our ceremony and we were very clear on the responsibility involved in taking these vows.

We were acutely aware (intellectually) that life was going to present some tough times but we also knew our love was strong and deep and could tackle any challenge that came our way. Besides, we had already gone through some very difficult times (enter sarcasm) like the stomach flu, unemployment and periods of soul searching and personal growth.

 

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Super Siblings!

By Ashley Huffman

 

Recently, we went to Florida Supercon, a comic convention, as a family.

 

Our daughter was very excited because one of her idols, Alex Kingston, who is known for her roles on ER, Arrow and as River Strong in the show Doctor Who, was going to be there signing autographs.

 

Amelie was buzzing with excitement as we neared her table, and squealed when she could actually see her in person. We made our way up to the line, and there Alex was, even more beautiful in person with her halo of golden curls. She glowed.

 

 

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Switch toy adapting 101

Many of our kiddos struggle with motor skills, making playing with toys a challenge.

Enter technology. Tons of toys can be adapted to work off a switch system, allowing kids to activate them using a large button or other device that is easier for them to set off than what is built into the toy.

But, as with most things special needs, the cost for those toys is astronomical, especially when compared to the same toy not adapted.

One of our awesome HIE dads, Andrew Weiher, put together a little tutorial on how you can adapt your toys with a switch! We cannot thank him enough for this information that will surely come in use for lots of families. He and his wife also started their own company, Contraption Adaption, to help other families.

 

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Keeping cool this summer

Summer is here, and as the temperatures rise, so do many parents’ concerns that their child will overheat.

So many of our kiddos struggle to regulate their temperature, so keeping cool is a key concern.

We asked our HIE parents what they use to keep their little ones cool during the heat of summer. In addition to cool foods for oral feeders and wetting down their hair, here were their go-to tricks and products:

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