Mom Shows Us What It Takes to Raise a Special Needs Kid & We Are Humbled

Inspiring 26

gabe's care mapIf it takes a village to raise a child, it takes a whole army to raise a special needs child. As any parent of a special needs child will tell you, there's just no way you can do it all on your own. You need a complex web of support. In fact, that web can be so complex, one mom of a special needs child actually sat down and diagrammed it all out for her family.

Cristin Lind posted "Gabe's Care Map" on her blog, Durga's Toolbox. And it's mind-boggling. Her son, Gabe, has a rare genetic disorder called Coffin-Lowry syndrome. And as you can see just from a glance at his care map, making sure Gabe gets the care he needs is one monumentally chaotic task.

That's why Cristin named her blog after Durga. She calls the Hindu goddess her patron saint because Durga fights chaos. After Gabe was born and the Linds began to realize the severity of his disorder, Cristin had to sell her business so she could focus full-time on managing Gabe's care -- managing the chaos.

Now Cristin works part-time as a health advocate for families of special needs children. She created the map when she was preparing to speak at a meeting of doctors about the complexities of caring for a special needs child. But the map helped her, personally. She says when she started showing doctors Gabe's care map, "It felt as if they treated me with more respect when they could see how many balls I was juggling." She's gone on to help other mothers create their own care maps -- to help their respective teams support them better, but also so they can understand their own lives more clearly. "Sometimes you can't see your own life until you step away and look," Cristin says.

gabe's care map

What would your child's care map look like?

 

Image courtesy of Cristin Lind via Durga's Toolbox

child care, developmental delays, toddler health, toddler development

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nonmember avatar Kelly

Thank you for this, it is beautiful because it is SO true! Every person who has ever disparaged a special needs child or looked at the family with the stink-eye should have this shoved up their nose. There is no such thing as free time or extra money, and the families of these children need boatloads of patience, and support from the community as a whole.

nonmember avatar melissa

That was SO humbling. This makes me thankful to have a healthy child and also grateful that it is possible to deal with some of life's hardest challenges. Think back to when we didn't have any care.for these children. Our compassion as a collective has grown!

nonmember avatar jenn

Wow. I believe I have to make one of those. I have two kids, both of whom have special needs. My son has a genetic condition called Tuberous Sclerosis and my daighter has neurosensoral hearing loss. My life is crazy, chaotic, and super stressful. But I wouldn't change a thing of it if it meant not having these two wonderful beings in my life. They have taught me so many things.

nicki... nicki.hemingway

We saw this and did one.  It's so overwhelming to see all we do on paper.  My ds has cerebral palsy and epilepsy and just seeing all we do (without thinking about it) is just astounding. 

nonmember avatar Shannon

My 21 month old is developmentally delayed but thankfully healthy. We spend a lot of time taking him to assessments, therapy appointments, etc. I thank my lucky stars every day that he's healthy and happy!

kansa... kansasmom1978

We should do one. My ds has autism.

Phyll... PhyllisGB

mine was similar -- I had to interact with my baby every 15 minutes.  Every 15 minutes.  There was NO place in the schedule for oral iron because everything else made her throw up.  She had IV, colostomy, therapy, then some other unmentionable stuff.  Thank GOD those days are over & my little one (with gastroschisis) survived.

dfour... dfournier0922

I don't think I would want to see it all written out. My son only has ADHD and ODD. But it's still a lot of work to get him to appts and try to help get caught up now that he's on meds. Then there's my epileptic husband. I don't want to see it all written out. I'd probably freak out.

Angela Lebowski

ummm....I am a special needs mom of a nonverbal, nonambulatory, severely delayed child, and I DO IT ON MY OWN!!

Cymbe... Cymbeline

Angela, I have a child with all of the things you listed, and seizures, and while I don't use nearly the amount of resources on the list, I can't imagine forgoing therapists, doctors, etc... That wouldn't be fair to my child.

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