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21 Things Special Needs Parents Would Tell a Person Whose Child Just Got a Diagnosis

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Getting a diagnosis you’re unfamiliar with, or one that comes with preconceived notions, is not always easy — especially when it’s your child’s diagnosis. Sometimes, the best way to gain understanding is to talk to  those who’ve been there before.

We asked parents of children with special needs to share one thing they’d tell a parent whose child just got a diagnosis.

This is what they had to say:

1. “Stop. Take a seat. Now take a deep breath. Breathe out slowly. Now set your shoulders, you will have a lot of doctor appointments, therapists, possible surgeries and challenges ahead. You can do this, and you’ll never have to do it alone. We are here for you. We have been there. We will make it together. From one special needs mom to another.” — Nikki Lynn Nichols

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2. “You’ll meet many amazing people you would have never met if your child didn’t receive a diagnosis.” — Jennifer Joy Brooking

3. “The ‘label’ is just a name for what is/has been going on with your child. He is still the same child he was before and you are still his parent. Now you just have a starting place to help him.” — Renee Healey Nilson

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4. “Now that you do have a diagnosis you have the power to learn all the new ways to embrace the uniqueness that is your son or daughter. Make games out of therapy, learn alongside them what methods work best and ignore those that don’t help.” — Shannon Miskimen

5. “Receiving an unexpected diagnosis is not easy… Go through all the emotions you need to. Then pick yourself up, look at your child and be the parent you always planned on being before this diagnosis showed up.” — Ash N John Bricker

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6. “Never give up hope, never settle for what they say your child will not do, always focus on helping your child strive to do everything they can and want to do.” — Tabaitha Delight Travis

7. “Find your village, your people, your support. This will be family and old friends and new friends and most importantly other special needs parents. They get it. You will need to call them, cry to them, complain to them, ask them to do your laundry. They will all learn to love your kids almost as much as you do.” — Katie Smeltzer Ireland

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8. “My life is different from everyone else who does not have a child with special needs, [but] I wouldn’t change a thing.” — Suzanne Lee

9.  I was told my son would barely talk, that he wouldn’t be able to understand simple conversations or that public school would not be an option. He’s a seventh grade honors student. Never let anyone push you into underestimating your child.” — Tina Williams

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10. “You won’t have all the answers yet. Be proactive, learn. Your providers/teachers/team are on your side and they want your little one to succeed. And when you think your plate is full, get a bigger plate.” — Molly Russell

11. “Focus on what your child can do instead of only what he/she can’t. Stop to enjoy the ‘small’ things and celebrate every success/achievement.” — Gabriel Casanova

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12. “[Your] child is not the file/condition. See your child as an individual. Keep your eyes and heart on your child and you will have the strength to do and be what they will need to help them succeed.” — Jenafer Bauerle

13. “Fight for your child’s health and fight for the help your child needs. Also, don’t lose yourself caring for your child. You need to take care of yourself. Remember you are your child’s best advocates and you can’t take care of your child if you neglect yourself. It’s OK for you and your spouse to have date nights, you need them. It’s OK to get a sitter. I remember putting my child to bed and having a candlelight dinner with my hubby and watching a movie on the couch. Sometimes date night are at home, but it’s important for the little things.” — Mellonie Swinford

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14. “Though it may be hard, try to find comfort in the diagnosis. You have answers and knowledge… Now that you are armed with this knowledge, you can focus on the best ways to support your child, get the services he or she needs and allow him or her to realize his or her full potential, whatever that might be.” — Leslie Linn Brown

15. “A diagnosis does not determine your child’s future. No doctor can tell you accurately what a typical child’s future will hold, so don’t pay too much attention to all the ‘can’t/won’t dos’ that are attached to a diagnosis” — Kristin Thomas Cutlip

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16. “If life was easy, where would all the adventures be? Embrace every moment… Look at your little one for inspiration on your ‘bad’ days; their smile, their determination will pull you through.” — Annemarie Chapman

17. “You have more power than you think. Be a strong advocate to assure your child gets what he or she needs in school. Make sure your IEP plan includes everything your child needs.” — Kelli Kerns Brockington

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18. “Respect your feelings. Your feelings will be like a roller coaster.”– Rosa Valledor

19. “Always follow your gut feelings. If something doesn’t feel or sound right, keep investigating. Don’t let educators, doctors, therapists or anyone talk you into something you are uncomfortable with. Keep pushing forward; you know your child better than anyone.” — Bonnie Phillips

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20. “Right now you are probably pretty overwhelmed… but I promise you will find beauty in this new beginning.” — Lorrie Ashcraft Stewart

21. “Love your child. Stand up for what your child needs whether it is in an IEP meeting, going shopping or eating out at a restaurant. Try to educate your family and close friends about your child’s diagnosis. Some may not understand. Many may never try to understand. Just love your child and never let anyone mistreat them. Remember, you are not alone. Join a support group. Make friends with other parents who have a child with a similar diagnosis. Lastly, take it one day at a time.” — Renae Lewis Murphy


If you’re a special needs parent, what’s one piece of advice you’d give to parents whose child just got a diagnosis? Let us know in the comments below!

Originally published: February 23, 2016
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