Praying for Parker

Pulmonary Hypertension Sucks

And it was almost like a tragedy to me. Oh, how I understand these words. I remember the day they told us that Parker had severe Pulmonary Hypertension. It was truly the worst day of my life. I HATE Pulmonary Hypertension. If you listen, this Mama explains...

Published Fri, Nov 08 2013 8:15 AM by Praying For Parker

Filed under: Holding On Tight To My Faith, special needs parenting, down syndomre, heart disease, lung pressures

Birthdays and the kid with special needs.

A Facebook friend was asking about ideas for birthdays and the kid with special needs. Her son is a lot like Parker. Non-verbal. NPO. Not really into any specific characters. Can’t go anywhere for a birthday party because it falls smack dab at the...

Published Thu, Nov 07 2013 7:11 PM by Praying For Parker

Filed under: down syndrome, Life With Special Needs, special needs parenting, birthday party ideas

An Echocardiogram and other terrors.

I think I’m doing pretty damn good. Parker has a sedated echocardiogram on November 12th and I have yet to hyperventilate myself into an oblivion. That’s because I’m making Reed go up this time. Yeah. I wish. I know. An echocardiogram...

Published Thu, Nov 07 2013 8:33 AM by Praying For Parker

Filed under: Holding On Tight To My Faith, pulmonary hypertension, Life With Special Needs, Hospital Frequent Flyer, medically fragile kids with special needs, speial needs parenting, echocardiogram

His personality isn’t disabled.

I look over and watch as Reed tickles and blows raspberries on Parker’s stomach. Yeah, he’s got to be careful not to muck with the g-tube, but that’s no big deal. Parker still laughs with delight, lifting up his pajama top hoping for...

Published Wed, Nov 06 2013 9:07 AM by Praying For Parker

Filed under: down syndrome, Life With Special Needs, special needs parenting

Keep Calm, It’s Only Christmas

My parents tell a story that helps me to put Christmas in perspective. Both of my parents grew up in conditions of poverty. My Grandmother candled eggs for a living to provide for my mother. My father grew up in a house without running water. He and his...

Published Sun, Nov 03 2013 12:06 PM by Praying For Parker

Filed under: frugal living, Life With Special Needs, special needs parenting, keep calm it's only Christmas, Christmas and kids with special needs

Friendships and this special needs Mama.

Friendships and this special needs Mama. When I first became a special needs mom, one of my friends, one that I was sure I would grow old with, simply wasn’t able to understand why I couldn’t just ‘let Parker go.’ In her defense...

Published Tue, Oct 29 2013 10:53 PM by Praying For Parker

Filed under: Life With Special Needs, Family and Friends, special needs parenting, friendship, special needs friendship

Painting furniture: An epiphany

Painting furniture is one way to stretch a meager budget when the new stuff is out of reach. When my oldest daughter got married she asked if she could take a simple dining room table that we had been using for a desk. It wasn’t anything spectacular...

Published Mon, Oct 28 2013 8:03 AM by Praying For Parker

Filed under: Life With Special Needs, Family and Friends, special needs parenting, perfection, painting furniture black

My totally typical kid with special needs.

No words. Just incredible gratitude for my totally typical kid with special needs. I’ll forever be thankful that I’m the one he signs “Mama” to. The post My totally typical kid with special needs...

Published Fri, Oct 25 2013 10:39 AM by Praying For Parker

Filed under: down syndrome, Special Needs, Life With Special Needs, special needs parenting

Baptizing kids with special needs, revisited

I’ve written about baptizing kids with special needs before. There is NO one size fits all option. There are just each person individual experience that leads to their individual decision. You can read more about our decision with Parker in my post...

Published Thu, Oct 24 2013 8:45 AM by Praying For Parker

Filed under: Holding On Tight To My Faith, Life With Special Needs, baptism, special needs parenting, mormons, lds.org

Obamacare: An Informal Poll

Last night Reed came home and told me about a friend of his that recently moved to California. This friend just received a letter from his insurance company informing him that due to Obmacare his costs for insurance just went up to………...

Published Wed, Oct 23 2013 8:48 AM by Praying For Parker

Filed under: The HIGH Cost of Health Care, Life With Special Needs, special needs parenting, Afordable healthcare, ACA

Halloween Playdough Mats!

It’s been a really weird few days around here for sure. I’m excited to get things back on track and have the perfect idea to share! Halloween Playdough Mats are wonderful fine motor and sensory activities. We make our own playdough, but the...

Published Mon, Oct 21 2013 10:11 PM by Praying For Parker

Filed under: Special Needs Homeschooling, playdough recipes, teachers pay teaches, playdough mats, Halloween crafts for kids

Cyberbullying

This is a comment that Nancy’s Mom left. I’m posting here rather than at the end of the other post, which as you can see I’ve chosen to take down. “I have debated about writing anything at all on this issue, not wanting...

Published Sun, Oct 20 2013 5:44 PM by Praying For Parker

Filed under: Life With Special Needs, internet stalking, cyberbullying

Watch my son with Down syndrome soar.

I get lots of emails and comments from readers of Parker’s blog sharing with me stories of the hard won battles and successes of their children with special needs. I’ve made some dear friends from this little blog of mine. It’s amazing...

Published Fri, Oct 18 2013 8:51 AM by Praying For Parker

Filed under: Advocacy, down syndrome, Life With Special Needs, Family and Friends, trolls, special needs parenting, Now I Can, therapies

Special needs student raped in school bathroom.

A Jackson, Mississippi mother claims that her daughter was raped in a Callaway High School bathroom stall while classes were in session. A special needs student raped in a school bathroom. What is wrong with this world? “She said she screamed. She...

Published Thu, Oct 17 2013 3:47 PM by Praying For Parker

Filed under: Advocacy, Special Needs, Life With Special Needs, special needs parenting, sexual abuse of children with special needs, rape of student with special needs

Charlie the Cockatiel

The last couple of weeks my oldest daughter and her husband have been staying with us while their new condo was being finished. Along with my daughter and son in law came Charlie the Cockatiel. I could never figure out why people chose birds as pets....

Published Wed, Oct 16 2013 8:35 PM by Praying For Parker

Filed under: Family and Friends, special needs parenting, cockatiel food, cockatiel care, cockatiel sounds

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