5 Things Special Needs Moms Can't Say

A recent visit with a dear friend was highlighted with the phrase, “I can’t say this to too many people.” Our hearts shared openly, knowing we’re on the same team, accept each other, and “get it!” Becoming aware of the life of a parent/caregiver is as important as understanding “special needs” and a way to join our team! Ready?

Allow me to share with you five things I can’t say to many people.

  1. “I’m at my wits end.” Rephrasing: “I need someone to talk to because life is really hard – everyday. I don’t get a break, and when I do, it’s for errands, not lunch out.” We’re venting. Sharing a hug and words that show understanding, “It must be hard to juggle all the things you do on a daily basis” rather than, “Yes, my child gets crazy sometimes, too,” is kind. Saying your child “getting crazy too” dismisses our challenges. Asking about our challenges would affirm for us that you understand-or are trying to!
  2. “I want to run away.” Just for the moment. That 24/7 continual care of someone is too hard, too long, too crazy, too demanding, too everything. We need a break. Having someone listen, helps. An occasional “lend a helping hand” opportunity – stopping over to take our child for a walk around the block for us to do something (anything) without an interruption would be a lovely kindness!
  3. “This was never what I wanted to do.” We wouldn’t want you to get the wrong idea, judge or misunderstand us, but our prayer, like yours for your children, was to have a healthy child. But today, there is nothing we’d rather do because we have  SO.MUCH.LOVE for our child. What we are learning, how we are growing, and the wonderful people we are meeting because of our child – we wouldn’t change a thing!
  4. “I’d love to get my hair and nails done regularly, but I can barely wash my face daily!” Truth be told: we might even be a little jealous (yes, we’ll have to confess it) that you can get to do (lunch and dinner out with friends, a movie, etc.) things we can’t even consider because higher priorities demand our time. Might you invite a young mom to lunch? Pre-arranging with her husband to watch the children, and surprising her with the invitation would be priceless!
  5. “If I hear, ‘You must be a special person to have a child with special needs,’ one more time … !” That sounds good in our heads (we’ve said it, too!), but we’re not special at all. Maybe God thought we needed a little more work and sent us our children to smooth off rough edges in our character and personality! While the process has been challenging, if God came to us and asked if we’d like our son healed, we’d probably say, “We see the beauty in the purposes You had for us. We’d love for You bless a young couple just starting out in this journey.”

Having someone like you walk beside someone like us …. offering a hug, cup of coffee, kind word, or a helpful hand, is like a cold drink of water to a weary traveler on this unexpected journey.

That three-hour visit with my friend … I needed that! I think she might have, too!

{Editor’s Note: This is a guest post by Cindi Ferrini, author of UNEXPECTED JOURNEY-When Special Needs Change our Course
to learn more about Cindi you can visit her at cindiferrini.com. If you have a special needs child we invite you to also read through the many posts by MomLife Today’s regular contributor Jennifer Dyer, her vulnerability to share openly has helped thousands of moms!}

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  1. Thanks for sharing this! The one I relate to most is about being a ‘special person’. I hear it all the time and really, we just do what we have to do….

    Please link up to my autism post! http://thinkingoutsidethesandbox.ca/autism-what-it-means-to-me/

    I can’t wait to read more of your posts, I am so grateful for the wonderful mama who shared this!

  2. I am a mother with a 8 year old that has autism. Thank you for posting this. I wish more people would understand what we go through.

  3. Thank you so much for posting this. My son is 21 months and has a chronic disease that takes a lot of time, and A LOT of doctor’s visits. With three other young kids, this is EXACTLY how I feel most days. Thank you so much for putting into words what I couldn’t.

  4. Some of this is very true, but I find that many mothers with children with autism (I have an 8 year old boy) make more drama around the issue than needs be. One mother I know SMOTHERED her child, yet when baby #2 came along, found he improved greatly because she wasn’t always babying HIM! Know the triggers. Create safe spaces for them, but treat them as normal as possible. And one more thing, if you have time to CONSTANTLY update your Facebook, Twitter, blog, Pinterest and etsy accounts, then stop complaining that you don’t have time. Rant done. Thanks for your honest post 🙂

  5. Kris Whitman says:

    Thank you for this!! I don’t have an Autistic child but I am a caregiver for my 89 year old mother who has Dimentia. Everything you are saying is everything I am feeling. Caregiving knows no bounds. I am having a very difficult time finding people to talk too that are going through this. I get all the helps and you can do this or look for this but I want to meet with someone that is going through the same journey. Like you wrote about it is that ~Having someone like you walk beside someone like us …. offering a hug, cup of coffee, kind word, or a helpful hand, is like a cold drink of water to a weary traveler on this unexpected journey.

  6. Thanks for sharing this! I remember years ago you sent me your Unexpected Journey book. I appreciated it and loved that you cared for me, but I was in the midst of so much chaos I’m not sure I ever responded. I think this is the plight of so many sp needs moms and all kinds of moms who find life overwhelming. Now that my kids are a wee bit older, I would tell friends to reach out to their friends with difficult caregiving situations, but be patient. Don’t take long silences as rejection. Keep reaching out. Your message, note, or text might be the only communication they receive. They will cherish it more than you know, even if they don’t always respond.