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18 Special Needs Parenting Tips You Could Only Learn From Another Parent

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Doctors and therapists are great, but as many parents of children with special needs have come to learn, professionals don’t have all the answers. That’s why sometimes the best advice comes not from medical staff but from parents who’ve been there.

The Mighty asked our readers to share the best advice they’ve received from another parent on this journey that no doctor would have been able to offer.

This is what they said:

1. “The best advice I have received from another parent is just that — that the best advice will always come from other parents and not from doctors as you walk the special needs parenting journey. This has definitely proven to be true.” —  Katie Smeltzer Ireland

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2. “I told another parent about a doctor who had told me my son wouldn’t live to be 2. [That parent] told me doctors can’t see the future and that no kid has an expiration date. By the way, my son is 13 now!” — Julie Graham

3. “Some of the best advice we got was from a NICU nurse (also a parent) who was trying to ease our worries about the future of our son, who had grade 3 and 4 brain bleeds. She said, ‘Try not to worry so much… None of this is going to happen overnight. You will have time to grow into this. Enjoy this little baby and the rest will fall into place.’ She was right. We’ve learned, and we’ve adapted.” — Brooke Herbert

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4. “When my daughter was still a baby, a mom from my support group had just pulled her daughter from all her therapy. She decided they were going to take a break and focus on her happiness instead. Years later, when my daughter started resisting and crying at every therapy session, I remembered my friend’s advice and pulled her from therapy. We worked on her happiness for a while instead — swimming, playing at the park, etc. That break gave her what she needed to return to therapy later and actually get something out of her sessions.” — Angie Wiencek-Ashe

5. “The best advice was that I’m the expert on my child. No matter how much knowledge a doctor may have, no one knows my child like I do so it’s important to find a doctor who believes that as well.” — Lauren Cootes

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6. “The best advice came from an autism mother (my daughter has a very rare genetic disorder, nothing remotely similar to autism, but nevertheless, the advice was right on spot). She told me to listen to all the advice and learn the exercises the professionals taught me, but at home I should focus on resting, relaxing and cuddling with my daughter. No pressure, just enjoy being her mother.” — Toia Lecumberri

7. “From anther single mom: ‘It’s a great day if you get a shower.’” — Melissa Sandoe

8. “Trust your instinct, your gut. It’s never wrong.” — Monique Lamore Moraga

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9. “He’s the same child after diagnosis as he was before diagnosis. [A] label doesn’t touch your love for him.” — Heidi Harris Harper

10. “I’m part of a wonderful support group for my son’s condition, which is an abdominal wall defect called an omphalocele. The best advice given to me, and I later have said to new parents facing this diagnosis, is ‘Every child is unique. Doctors live by statistics. We live by hope.’” — Michelle Storey

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11. “Put one-piece pajamas on backwards to avoid poo on the ceilings.” — Andrea Kay Holt

12. “Live in the present. If you get too caught up worrying about the future for your child and all of the ‘what ifs’ and unanswered questions, you may miss all of the wonderful moments happening right in front of you.” — Jamie Piper England

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13. “No matter how fierce you need to be every day, no matter how dedicated you are, no matter how much love you squeeze out of every day, always, and I mean always, take some time for yourself. I don’t care if it’s time to go into the bathroom and splash some water on your face, if you get the time to go out to grab something to eat that you don’t need to cook or clean up or lie down for a nap if [your kids] do, but do at least one thing for yourself every day and do not feel any guilt for it.” — Michele Ray

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14. “You have to take [it] day by day and not let your child’s medical condition become your child.” — Elizabeth Dellaratta 

15. “When you’re having a rough day, focus on making it to the end of the day and nothing more. Most days, making it through the day feels do-able. When you start imagining whether you have the strength/skill/money/whatever to do what you do for years, it’s totally overwhelming and entirely unproductive.” — Rochelle Halpern Yankwitt

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16. This journey will be a roller coaster. As hard as you try to protect yourself, the lows will hurt. You will bottom out on the lows. So, when you get to the highs, don’t guard yourself from those either. Enjoy the hell out of the highs on this journey.” — Amy Gerrish Bennett

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17. One mom once told me if the doctor says something that doesn’t seem right, go with your gut feeling because you will always know your daughter better than any doctor… and her statement proved to be correct in numerous situations.” — Tala Rifai

18. It will get better.” — Susan Dobbins Brasky

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 *Answers have been edited and shortened. Images via ThinkStock. 

Originally published: October 21, 2015
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