#parenting special needs

[superkatherinegruenberg]

Rhyme Time - Teach Your Child to Rhyme in Less than a Week - Multi-senso...

[mamatude]

Encouraging Words for Parents of Kids with Special Needs for 4/23/19

[parentingroundabout]

On Parenting Isn’t Pretty

Catch up with two recent posts about finding jobs for young adults with disabilities: “Open Letter to Employers Who’ve Rejected My Kids” and “Job Outlook: Cautiously Optimistic, with a Side of Confusion.”

[mamatude]

Rigged up a little slideshow with my Love Notes for Special Parents. Longest YouTube would allow was 10 seconds per item, so if you’re not a speed-reader, I recommend keeping a curser on the stop button.

[theresilientparent-blog]

An interview I did for SPD Parent Zone, just went live. If you have a minute, listen to Kelly's cool intro. If you have more time you can hear me talk about those normally unspeakable feelings we all have as parents with kids with special needs. (Note. You will need to turn up your volume to hear it, and please pardon my overactive laughter. I was more than a little nervous.)

[theresilientparent-blog]

Could an ancient women’s hardest moment, speak courage into my heart?

I sat in church on Sunday for the first time in a while.The message was about Mary at the foot of the cross and family systems dynamics. I thought about how unstable I feel as a parent at times, and I wondered if that would have been true for Mary. Could her life as a parent teach me something?

She had a child with special needs (probably in an advanced, exceptional way), as evidenced when Jesus started teaching in the Temple at the age of 12. She must have known that she had a challenge ahead of her. She had no road maps and could not rely on typical parenting no doubt.  I have to imagine it was a crazy and stressful parenting road, a road that would eventually lead to Golgotha.

Yet, she hung in there. She showed up again and again in key moments in scripture, at birth, at pre-teen, at the first miracle, at death. (There are other accounts and nuances of the story, depending on whether you are reading the Koran, Gnostic Gospels, or the traditional Christian cannons that include Mary.) I have thought of this as I think of our own journey as a family, losing a child in an unusual way, and now seeing how our family is affected with the physical and emotional meat grinder that is cancer.

Was Mary ever as tired, as overwhelmed, as ready to lay down on the kitchen floor with emotional nausea at times? Was she ever frustrated that she could not just parent like everyone else? Did she wrestle in bed with depression? Did she struggle to make the kid’s lunches in the morning? Did she fear for the future? Could an ancient women’s hardest moment, speak courage into my heart?

No major answers here. Mostly questions. And hope.

Because from my faith tradition, my view of Mary is not just the pain that pierced her heart, but the story of the resurrection. I trust that our family will need to go through many deaths, (figuratively I hope), and many resurrections. At the point of giving up, just in time, will come the desire to open up in love to each other and the sheer will to try again.

My wifes’ third wave of chemo is coming up Wednesday. There is something about standing at the foot of someone going through chemo that wishes for Mary’s strength.

Are you standing at the foot of something too, something that needs resurrection power of some kind? What is the weariness that you would like to put down? Where is your hope from your own tradition/thought process?

Shanti always,

Mantu

[theresilientparent-blog]

Wig Store

The woman who helped us at the wig store today should have been frustrated that we brought our whole family to shop for my partner who is starting chemo next week. Our nearly two-year-old, was poking at the Styrofoam heads underneath the elaborate display of every feathered, bangs, layered, bobbed hair, Jane Fonda, Ja Ja Gabor, Madonna due you can imagine. My eldest at age seven was living out her ADHD diagnosis by spinning in the spare chair. I was using every creative idea I could muster to keep the kids controlled. I gave names to all the wigs and started to make up stories for our eldest while offering rides to the toddler.  

 The clerk whispered, “You remind me of my father. He was always hands on with us while my mom battled polio.” This was the compliment of a lifetime for a stay-at-home dad.

It was at that time, that I realized that there was a deep story behind the woman who sold wigs and taught us the intricacies of weave and hand-stitched mixed with machine and how to make a part look real. I looked at her and saw a broker of resilience, a woman who helped others to smirk, laugh, and applaud at the bare and peach fuzz layers of life. I saw the women I had just named held up on the Styrofoam pedestals as witnesses that all who came here would be defiantly claiming well-being while accepting their given reality. --A maturity of becoming, a determination to stay in life while some faced death.

 My own partner of twenty years I saw feeling each wig and claiming her own resolve in her unique journey as a blind woman with cancer. I saw her claim her piece of the wall, her choice of blonde with a bob and a part to one side. My pride in her was beyond measure.

 “Mommy, do we get to shave you now?”, our daughter asked expectantly.

 “Soon, Lamb. Soon.”

[theresilientparent-blog]

From Awful to Awe-filled

Facing the hardships of being a parent, especially with a tough to parent kiddo, pressures us. What we do not always pull into consciousness is that the pressure which feels at times like failure, like collapse, like remorse filled disruption, can be reshaped into something better. 

Taking the awful experiences, the ones that you have a hard time even verbalizing because you never thought it could get this bad, and finding the awe-filled moments, sounds like saccharine coated word-play. Even so, it is true. Awful and awe-filled are not opposites, but the intersection of an internal choice. This choice is the difference between the person who is crushed by all of this, and the one who finds a way to thrive against all odds.

The choice is to be open to change, at an existential level. To deeply accept that you do not have to cling to who you were before being a parent to still be your best you. That choice becomes the fulcrum point of your transformation. 

This is not “what doesn’t break you makes you stronger”. 

This is what DOES break you gives you the choice to reform and rediscover a better, more resilient you. 

The prophet Jeremiah (Jeremiah 18) saw a potter botch a pot on the wheel and saw him start over. That, he realized, is what what God would do for people. 

In the same way, we must stop fighting the pressure, and surrender to being reformed again and again. The openness to the potter’s wheel is the difference between broken dishes, and works of art, between a broken family, and a family that thrives anyway.

Shanti always,

Mantu

Mantu Joshi is a stay-at-home dad in Portland, OR, an ordained minister, and author of the recent book, “The Resilient Parent:Everyday Wisdom for Life with Your Exceptional Child”