Grace and Kindness for Parents of Children with Special Needs

Navigating a world you didn’t know you’d be in

I recently was asked by our school district to present to parents of children with special needs on the topic of having Grace and Kindness with Yourself— Navigating a world you didn’t know you’d be in.

As I prepared, I really tried to be broad, since this invitation was sent to every parent in school district who has a child with an IEP. But I also tried to create something with depth, so that their precious time would not be wasted. The parents who attended were incredibly open, honest, and shared deeply from their hearts. 

I feel like this information can help so many people who are helpers or who hold space for other people, so I’m sharing it here for anyone who might need it.  The take aways that I share first were what I compiled from the group discussion and that I sent in a follow up email to the parents so that they can come back and remember when they need to.

I’m sharing the text from my slides as well as the images. Please share with those who might need this.  

Take aways— Reminders when offering yourself grace and kindness:

• Notice when you’re blaming yourself. It’s not your fault. You didn’t cause your child’s condition.
• Notice when you are pouring your energy into things that are out of your control and try to refocus and come back to what matters most to you.
• You’re going to feel angry sometimes. Let the anger flow so that the sadness that’s behind it can come out, too.
• Look back at how far your child (and you and your family) have come. Celebrate their (and your) growth.
• Several of you mentioned worrying that you are coddling your child too much. Remember that they are developing and so is your relationship. As you notice something not working anymore (like coddling) it’s ok to change. Just like their development in other difficult areas, like potty training or sleeping alone or feeding themselves, you can step back in small ways to encourage their growth and allow them to move to the next layer of their development.
• Remember that you are doing incredibly hard work, creating a path for your child in a world that was not built for their needs. The ADA happened in 1990. That’s only 32 years ago!!
• Sometimes you are chopping your way through a jungle and making a path where there’s never been one before. That’s exhausting work. Remember to take breaks.
• Notice how much you’ve grown as a person from parenting your child. Offer gratitude to yourself for all of the ways you show up for your family even when it’s really hard.
• Your child is so lucky to have a parent like you.

Slide images slide to the right and left with arrows

Presentation: Grace & Kindness for yourself as you navigate a world you didn’t know you’d be in— Support for caregivers of children with special needs

Talking points

• Introductions
• Special needs is a whole family issue
• The struggle is real
• Unchartered Territory
• How to hold space for yourself
• How’s it going
• Current Struggle
• Group Discussion

Specials needs is a whole family issue

• Your kid isn’t the only one with special needs in Your family
• Having at least one person in a family with special needs means you have a whole family with special needs because everyone is affected-parents, siblings, and extended family members
• If one person has special needs, everyone has special needs

One member with special needs in a family means that everyone’s

• sleep, eating, exercise
• mental health
• resources
• relationships/ marriage
• quality/ family time
• personal/ self care/ self maintenance
• financial resources

are uniquely impacted and affected

Everyone at some point:

• Feels angry, confused, frustrated and  even resentful at their child’s needs
• Blames themself (or their spouse/ partner) when things aren’t going well
• Blames the doctor/ teacher/ social worker/ case manager
• Gets angry and unleashes your frustration on people who don’t deserve it (usually the insurance customer service person!)
• Feels like giving up
• Wishes for something different
• Feels they aren’t cut out for this

You’re navigating uncharted territory(and that’s extra stressful!)

• We learn to parent from how we were parented
• Chances are, no one in your family of origin had the same issues your family is currently facing
• ‘Parenting from scratch’ takes extra mental, emotional, and financial resources that are likely already limited.

How to hold space for yourself

• Let the tears flow
• Learn when you need a “do over”
• Know when to change your expectations (it doesn’t mean you are giving up)
• Learn when to stop and walk away
• Sometimes you will look crazy (it’s not you, this world isn’t built for special needs)
• Forgive yourself, forgive the other person
• Get some sleep- your kid needs you and it’s easier to show up if you’ve slept

Writing Prompts/ Discussion Topics

How’s it going?

• TAKE A MOMENT TO THINK ABOUT WHAT:
• • is working well in your child’s life
  • has recently improved
  • how far your child or family has come

What is a current struggle your child is navigating?

• How are you feeling about this struggle?
• How am I feeling about this situation?
• What is in my control?
• What is not in my control?
• Have I done everything in my control?
• How do I feel about what’s out of my control?

Group discussion, Please share:

• something that you’ve learned or realized about yourself tonight
• recent success with your child
• current struggle or need