The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for mom

A Bill of Rights For Parents of Kids With Special Needs

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I saw this posted on a blog I read by a mom with a special needs child and thought I’d pass it along to share.

Written by Ellen S. Ellen, can be found at To The Max.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don’t always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that’s what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be “over it.”

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio * We have a right to fire any doctor or therapist who’s negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not alw

ays behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, “I don’t know how you do it.”

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

For a printable copy, e-mail LoveThatMax@gmail.com.

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Parenting with a Chronic Illness

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Legoland Wikipedia

Parenting and illness is a hot topic—especially among women. There are so many questions:

  • Should I have a child? Can my body handle a safe pregnancy?
  • When? How long should we try?
  • Will the child have my illness? What are the odds?
  • Can I take my medications while pregnant?
  • Should I adopt? Will anyone give me a child with my illness?
  • Can I do it? What if I find out I can’t?
  • What if my spouse doesn’t help enough?
  • What if I decide not to parent?
  • How do I explain my decision to people? How much do I say?

And I am getting more and more emails from grandparents, especially grandmas, who have a chronic illness and yet are still expected to be a full-time caregiver while their son or daughter works. (We have an article in the current issue of HopeKeepers Magazine about grand-parenting when you are chronically ill.)

  • How can I raise my grandchildren? Where do I get the energy?
  • What if I can’t do it? How do I say no?
  • How do I explain I want to but my body won’t let me?
  • How can my child work and earn money for the family if I don’t provide free child care?

As many of you know I am the mom of a 6-year-old son. (He’d say “six and a half.”) My husband and I adopted Joshua at birth and he’s the little spark and twinkle in my life that keeps me going. But yes, being a mom is hard.

School got out for the summer Thursday. Friday I realized just how much energy he really does have after spending a full day with him. Saturday I awoke with a really bad flare. We’d planned to go to Legoland to celebrate “out of school!” and because it was “Star Wars” weekend.

Josh said, “Let’s wait until tomorrow to go because we want Mommy to go, right, Dad?” Ah. . .what an amazing kid!

Only. . .Sunday (today) rolled around and I was flaring even worse, this time with my knee out of place all night despite extra medication and thermal wraps.  Hands still like claws. Josh was okay with just going with his dad and they got home an hour ago. It was a special time.

I went to the grocery store for a few necessities and did some stuff around the house. My parents arrive next week and we’ll all go to Legoland then, (we have summer passes) so I told myself it was no big deal. These moments will come when you are parenting with a chronic illness.

I have some blog posts coming about parenting with an illness. I am also working on a moms with illness Christian book. I see all of this as a need. At the same time, I want to be sensitive to those of you who read this who do not have children, those of you who have perhaps lost a child (either in heaven, or maybe to an ex-spouse.) And I know many of you made a decision not to parent (some because of your illness) and though you are okay with that choice, you may still grieve it.

I am always open to hearing your feedback and your stories. There are more of you than you realize. But because I haven’t had that experience I am unable to write about it as one of my personal daily events in the world of blogging. I did write an article in the past called When You Have an Illness and Decide Not to Parent

I’ve gotten a lot of feedback on it over the years. So if you are not a parent, please know I have no plans to turn this into a mommy blog.

If you are a parent, know that I have heard your pleas of “how can I survive the summer?” and I will be sharing my own successes and struggles with you and hope you will share too so we can all make it a wonderful summer together!

I guess that’s all I wanted to say. (Smile)

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