Parenting

10 Inspirational Life Tips From Moms of Kids With Special Needs

mom with toddler who has down syndrome

The diagnosis comes. Your child has what's commonly known as a "special need." So you turn to the experts, to the books, to anything and anyone who can answer the questions swirling through your head.

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But if there's anyone you should be asking how to proceed now that your child has a diagnosis, it's the people who have already walked in your shoes -- the mothers of other kids with special needs. So we asked moms of kids -- moms who have autistic kids, moms who have kids with limb differences, moms with kids who were born with Marfan syndrome, even moms who have their own differences -- for one essential "life tip" they would give to any other parent who is about to embark on the journey of parenting a child with special needs. Here's what they had to say:

1. Laugh. "Life is so hard. Parenting is hard. Parenting kids with disabilities is hard. Finding things to laugh about makes it not just better, but kind of awesome. Laugh about yourself. Laugh with your kids. Find yourself a goofy pet and laugh at it. When something is so terrible that you say, 'It'll be funny later,' take the time and laugh now. Just like I learned from a motivational board on Pinterest (the best advice always comes from Pinterest): Laughter is the difference between an ordeal and an adventure. Life is an adventure. Treat it as one." -- Jean Winegardner, blogger at Stimeyland and mom of an autistic child

2. Don't lose yourself. "Everybody always tells you to let people know that your child is not only his or her diagnosis -- that there is so much more to them than their autism, or their extra chromosome, or their cerebral palsy. What they often fail to mention is that you need to make sure that you don't pigeon-hole yourself into that same corner. For the first few years of my son's life, I truly began to lose myself while buried under all of the appointments and evaluations and therapies. It took me a long time to figure out that my entire identity had somehow been overtaken and that I needed to stop and take some time to remember who I was beforehand. Don't forget to continue to find time for the hobbies, friends, and little luxuries you have always enjoyed -- be it a massage or a cup of coffee solo." -- Jamie Krug, blogger behind Jamie Krug, Author and mom of a little boy with autism

3. Accept that it's OK to get angry. "Try to give oneself a crash course in acceptance of an idea that may be radical to those who are people pleasers or shy -- you will have to take up arms. Those arms will be courage, tenacity, and sometimes sustained righteous anger. As the parent of a special needs child, you are the only person who will speak and fight for your child. You will like to think better of the world. You will be disappointed. This will change your life." -- Leigh Merryday, blogger at Flappiness Is and mother of an autistic child

graphic about inspiring quotes

4. Ask questions! "You are your child's best advocate. If a doctor or specialist tells you something that doesn't feel right, ask more questions. Even if it may take more time, visit a different specialist or call different therapists and ask extra questions. Additional research can help you make decisions especially if they are different from a doctor's recommendation." -- Jen Lee Reeves, blogger at Born Just Right and mom of a little girl with a limb difference

5. Find your safe space. "For every new, uncomfortable, and out of the comfort zone experience we attempt as a family, I need at least a dozen hours in my safe space. With my people. With people who understand that [my son] is just ... [my son]." -- Jessi Bennion, blogger at Life With Jack and mom of a little boy who was a micropremie at birth

6. Find THEIR safe space. "In hopes of avoiding a meltdown, and because self-harm is not an issue, I leave my kids alone and give them time to self-soothe and gain control over their situation when they are experiencing overload. Because I am autistic and experience these things as well, I know that when someone steps in with the intention of calming or 'helping' me, they are (unknowingly) controlling the situation and doing what they feel is best without taking into consideration what I want or need. For my kids and me, this is seen as an intrusion and causes more aggravation and stress and tends to prompt or intensify the meltdown rather than avoid it. Respect your child’s needs, find out what he or she prefers: A Safe Place? Headphones with music? A walk outside, maybe? It’s important for parents to find out what their child wants instead of what they feel they would want if the situation were reversed." -- Renee Salas, blogger behind S.R. Salas Autism Blog and autistic mom to autistic kids

7. Think before you speak. "Watch how you talk about your child's disability in front of them, or how you let others talk about it. They internalize more than you may realize." -- Maya, blogger behind MarfMom and mom of two little boys, one who has autism and the other Marfan syndrome; Maya also has Marfan

8. Get used to waiting. "Be prepared for waiting rooms and doctor's offices with a bag of familiar toys and books or have games that you play each time you wait so the time goes by quickly and your child is less focused on trauma and instead focused on fun. We have played 'I Spy' hundreds of times!" -- Diane Lang, blogger behind Momo Fali and mom of an autistic child

9. Set a good example. "When people stare at you child, especially disapprovingly, don't bother telling them off. Instead, be an example to them by showing them how you communicate with your child. This takes practice (and patience), but it is the thing that works best for me." -- Laura Shumaker, blogger at LauraShumaker.com and mom to a 28-year-old son with autism

10. Laugh. What? We said that already? It's that important, folks. "Humor is a very powerful and healthy coping technique that helps release endorphins, the body's natural painkillers. It's also supposed to tighten abdominal muscles though we have no evidence to support this in our own lives. Despite laughing all the time, we still have belly weight left over from our babies (who are now ages 15 and 17 respectively)." -- Gina Gallagher and Patty Terrasi, sisters behind Shut Up About Your Perfect Kid and moms to kids with special needs

What are your best tips for other parents who have kids with special needs?

 

Images ©iStock.com/kali9; ©iStock.com/lilipom

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