Dealing with a Special Needs Diagnosis

Those of you who read my essay Embracing Life or the recent Guideposts article know that I struggled mightily before and after Isaac arrived with a diagnosis of Down syndrome. Today, like so many parents, I can say that both Pierce and Isaac are the loves of my life, and bring both my husband Ray and I unique joy and satisfaction.

photo 1If you’re grappling with a diagnosis, here are a few lessons I’m learning and affirming every day, most of which I find handy with any kid. I hope these tips will comfort and encourage you, knowing that they come from a mom who was at first really crushed and smushed by the news.

  1. No matter what you’re feeling right this minute, know that you will love this child with every fiber of your being and you can have great joy and deep satisfaction, as with any child.
  2. And whatever you feel right now will pass. It will. No matter how overwhelmed, angry, sad, terrified, ugly, hopeless, confused and desperate you feel right this minute, it will pass.
  3. Network on Facebook if not face to face. There are groups for every diagnosis and you can watch from the sidelines until you’re ready to engage.
  4. Don’t read about potential issues or anticipate problems, which fuels fear and overwhelm. You’ll find the internal and external resources to deal with whatever when the time comes.
  5. Guard against “catastrophizing” by staying in the moment and sticking to the facts.
  6. Whatever your child’s limitations, you’ll be able to know and value their essence as an individual.
  7. What as first may seem a curse can be the greatest blessing of your life. (And BTW, the opposite  is true, too).
  8. You, your other kids and your whole family can be the (far) better for this.
  9. Though there are admittedly some challenges to raising a child with special needs, it can be a uniquely gratifying and validating privilege to help meet them.
  10. Your child will routinely surprise you. Sometimes when you’ve given up hope.
  11. Don’t compare yourself or your parenting to anyone else. Ever.
  12. Don’t let experts pressure you into pressuring your child.
  13. Life can be extraordinarily “ordinary” and joyful again.
  14. Don’t sweat milestones. Embrace your child’s pace.
  15. Don’t compare your kid to any other kid. Ever.
  16. You can have a very normal and fulfilling life.
  17. Everyone and every kid is different by design.
  18. Even the best doctors don’t know everything.
  19. Not every comment requires a response.
  20. People won’t understand and that’s OK.

Of course, these are all a matter of opinion, but thankfully, we get to have opinions.

I’m on a journey collecting lessons and would love to hear yours.

God loves you and so do I,

Isabella

 

YosuicoMT

YosuicoMT

President at MightyTykes
Soon after Isaac was born, Isabella Yosuico learned that he would have hypotonia, low muscle tone and weakness common to kids with Down syndrome and many other conditions.Like any mom wanting to help, Isabella sought a solution. She took a scrap of fleece and sand from the kids’ sandbox and whipped up a tiny pair of weights.
YosuicoMT

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Soon after Isaac was born, Isabella Yosuico learned that he would have hypotonia, low muscle tone and weakness common to kids with Down syndrome and many other conditions. Like any mom wanting to help, Isabella sought a solution. She took a scrap of fleece and sand from the kids’ sandbox and whipped up a tiny pair of weights.

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