The Things We Don’t Say

The Things We Don't Say

I’m going to break one of the unwritten rules of special needs parenting.  I’m going to tell you the truth about our lives.  I’m going to tell you the things we don’t say.  The things we don’t say because we want to be appropriate.  The things we don’t say because we don’t want to be judged, and the things we don’t say because we don’t want to hurt your feelings.  I’m going to break the rules and I hope we all survive the truth. 

When we hear a parent of a neurotypical kid say something like, “Man it’s been a rough day, I sure need a break”, we die a little bit inside.  We bite our lips, we hold back tears, and we force ourselves not to take off running.  We usually smile politely, nod our heads in agreement and tell some joke about how our kids flooded the bathroom too.  But there are so many things we don’t say.  We don’t tell you about how rough our year has been, how many different therapists we have visited, the different medications we have tried.  We don’t tell you how we have depleted our savings accounts on alternative therapies that aren’t covered by insurance.  We for sure haven’t told you about the pain and anguish we have felt when we have to walk away from our little ones and leave them in locked residential facilities or psychiatric hospitals.  We would never tell you how we lay awake at night and wonder what will happen when our little ones are old enough to be prosecuted as “criminals” for behaviors that they have little to no control over.  And we most certainly wouldn’t say “Yep I’d like a break too but no one else can handle my child’s behaviors so I won’t get a break anytime soon, if ever!” 

When we read a post on Facebook that says something like this, “Parent Teacher conferences were great!  My kid has all A’s, is in the gifted program, AND won an award for outstanding citizen!”  we throw up a little bit in our mouth!  Honestly, it’s not that we aren’t happy for your kid.  We are!  We will “like” your post but we won’t say something.  We would never say, “I found out my kid is almost average, turned in almost all his homework, and only peed his pants three times at school this quarter.”  We wouldn’t tell you about the bullying our kid may be experiencing by those amazing all A outstanding citizens, and we sure wouldn’t tell you every time we read a status like that we grieve a little bit for the children our kids could have been had they not been dealt these special needs that make their lives a bit more difficult.  We also don’t tell you that our kids with “behavior problems” or “social awkwardness” probably work harder every dang day to do what comes so easily to your child.  We wouldn’t want to offend you or hurt your feelings. 

When a parent of a neurotypical child says something like, “I can’t wait for my kid to outgrow the terrible twos, get over these temper tantrums, and grow up a little bit”, we have to do some deep breathing before we smile and nod.  We would never tell you how fortunate you are to have a child that will “outgrow” these behaviors.  We don’t tell you about rages that go on for hours.  We would never speak of how our 7 or 12 or 16-year-old still throws temper tantrums loud enough to break glass.  Nope we wouldn’t do that.  We also wouldn’t tell you how fortunate you are to have a child that can eventually calm down and speak with you about their feelings.  See some of us parents have children that are 8 and still non verbal, some of us have children that can’t process their emotions at all and only express anger, and some of us have kids that cycle through emotions so quick they couldn’t identify them if they tried.  We wouldn’t tell you how jealous we are of you and the normal stages your child is progressing through. 

Those are just a few of the things we don’t say.  Not all of the experiences above are my own.  Each special needs child brings a different set of joys and challenges.  But I’ve found that the emotions most of us special needs parents experience are similar.  We grieve the loss of normalcy in our children’s lives, we struggle with jealousy, we wish we were busy with dance classes and swimming lessons, but instead it’s therapy appointments.  We want so desperately to understand your struggles but we want you to acknowledge ours.  We want you to know your audience!  Complaining to a mother of a nonverbal child about how much your daughters talking drives you nuts may be a poor choice.  We would never tell you that though.  It’s one of our unwritten rules.  One of the things we don’t say. 

I broke the rules today… I hope our relationship can survive…

Comments

  1. Leigh says

    wow, this is so accurate. the number of times I have bitten my tongue, wanting to say something in response to some report of a friend on a minor misdeamenour of their child, or their failure to get straight As etc. You are so right – the things we don’t say.

    • Jessie says

      Leigh isn’t it amazing we haven’t bitten our tongues right off! I’m so glad you connected to my writing. Thank you for taking the time to read and comment! Blessings on your journey!

      • says

        Jessie! This is beautiful! I bet it felt good to write this! I always count my blessings with the boys so that I don’t get caught up in the negatives of autism. These things can be so tough – especially the bullying and the way people react at non-age-appropriate tantrums. Hope this gives insight instead of upsetting the moms with “normal” kids! Blessings on your journey! 😀

        • Jessie says

          Thank you Kristy! I try to focus on the positives also. It’s easy to get bogged down in the struggle if we don’t the positives. Blessings to you also!

  2. Jo Ann says

    I have had to read this several times as it makes me smile! It is such an accurate account for the way I feel EVERY day!

    • Jessie says

      Jo Ann! I’m so glad you could connect to this post and that you have read it several times. One of the best parts of posting this is seeing how many other parents have been keeping quiet too. We really aren’t alone. Thanks so much for visiting, reading, commenting!

  3. Jaimie Stoddard says

    I have been thinking all week about how I have so little to post on Facebook about my life, because no one really wants to KNOW! LOL! Thanks so much for your blog.

    • Jessie says

      Oh Jaimie that made me chuckle. It’s it funny how people would rather not know. Thanks for taking the time to read and comment! Have a great weekend.

  4. Mary Beth says

    Oh gosh, did this speak to me today! Thank you … I have the unique challenge of parenting an adopted daughter (7) with FASD and being the step grandmother of 16 (count ’em!) “typical” children. On a daily basis I “like” posts about my gifted, wonderful grandchildren to whom I am devoted, while secretly dying inside. I am, on occasion, subsumed by guilt when I choose to ignore some stellar performance (honor role, basket ball star, violin virtuosa) on the part of a grandchild because my own daughter struggles to participate in any activity that requires social interaction. Unfortunately, my stepchildren do not believe in FASD, but prefer to suggest that if I spanked a little harder or deprived my child of another toy or opportunity (as they do with their children), she would “behave.” Can I say I’m frustrated, hurt, angry????

    • Jessie says

      Oh my gosh Mary Beth you have quite the struggle! I would say you have every reason to feel frustrated, hurt, angry… heck a huge range of emotions! Please know that many of us “get it!” even though your family doesn’t. If only everyone understood what FASD (or other special needs) are really like they would know that we can’t just spank it away. Hang in there and I will be praying for you and your daughter.

  5. Thalia Williams says

    Thank you for your honesty. I have friends with special needs children and because you tell it like it is, I have a better understanding of what they go through. That being said, parents of special needs children truly are saints. I have a special appreciation for them (and you!).

    P.S. Your children are adorable and I love hearing about them!

    • Jessie says

      Oh thank you Thalia! I promise you though we are not saints. I always say I’m just a mama that prays. :-) Thank you so much for taking the time to read and comment! I sure appreciate it.

  6. Brandi Siebenaler says

    Jessie, I absolutely loved this! It was beautifully written. I am proud to say that I had the opportunity to work with your son and I wouldn’t have traded it for the world. I had an absolute blast being his teacher. You are an amazing parent with a beautiful family!

  7. Lanie says

    Jessie, I so loved reading this!! My son has ADHD and has had some trauma, which together have led to a lot of behavioral issues. I just hate how everyone wants me to “fix” him to make him easier to deal with. Luckily, we have found a good combination of diet regimine, activity, and medication which have helped get him to at least be accepted in those groups of boys known as “all boy”. I admire you for all you have done as I have had my own struggles with why I cannot just have a normal. child. I love my little guy and I know that he loves his mom and I recognize that while his mind runs a millions miles an hour, he also has the most amazing, creative, imagination. I know that gift will bring him greatness in his future.

    • Jessie says

      Isn’t it amazing how people think there is some quick “fix”. Really if there was wouldn’t we have used that already to make our own lives a bit easier. :-) You are exactly right about the gifts helping him in the future! I’ve always said that I wanted kids that were funny, kind, and well bonded to their people. My kid is those things and that is a huge blessing! We just have to focus on the positives and grow from there right.

  8. Jessica says

    I was a SPED teacher for 8 years and now I am dealing with some issues with my daughter. I have been on both sides as a teacher and now as a parent. Boy I wish I had my children before I started teaching I believe it would have made me look at things in a totally different way. My heart breaks for my daughter who is in the first grade and had a large amount of friends and now that she has started having problems how the tables have turned on her. I just want those people who do say things that are hurtful to think about what they would do if it was there child. I never really thought about it until now even being the sped teacher. I know I do not deal with what a great deal of people do but I know what I am dealing with for my daughter is enough to open my eyes to what a great an wonderful life my family has.

    • Jessie says

      Jessica thank you for taking the time to read and comment. It never ceases to amaze me how hurtful people can be without realizing it. What is even sadder is the people that are hurtful even when they know they should do better. I hope that your daughter makes great strides and you encounter positive and supportive people! Blesses to you!

  9. says

    My goodness, you are living my life! I am a grandmother raising grandchildren with mental disabilities and love your website. This post: Special Needs Parenting, the things we don’t say, says it all.

    • Jessie says

      Bravo Barbara! How amazing that you have stepped up to raise your grandchildren. They are so fortunate to have you!

  10. says

    Coming from another special needs Mom this is a great post. Very honest and to the point thank you for posting this. Parenting a special needs child can be a full time job,and our plate is full at times. I have learned to celebrate every little victory we have. Good luck to you, and your family. Blessings, and prayers for all of you.

  11. Jeanie says

    I just followed a link on the Gazette to your website. I loved reading “The Things We Don’t Say”! Thank you so much for writing it and speaking so well for so many of us. I am a grandmother raising two grandchildren with trauma and attachment issues, both diagnosed with PTSD and RAD. There is never a dull moment around here :) I hope you don’t mind my sharing this article on a FB group for parents raising children with Reactive Attachment Disorder as well as other alphabet mixes. Blessings to you and your family.

    • Jessie says

      Oh thank you for coming to visit and taking the time to comment Jeanie! PTSD and RAD are tough, heck who am I kidding, all of the alphabet soups are tough! Please feel free to share with anyone you would like. I love connecting with other families. Hang in there and come back to visit soon!

      • Jeanie says

        I agree! All the alphabet soups are tough. I’m not sure one is any better than the other. We are fortunate in that we started intervention early and we are also fortunate that we were able to find a wonderful therapist to help us. We are optimistic that healing is in our future :)

  12. says

    Jessie, you are a brave truth teller. Your courage is inspiring. I think the world needs more brave, truth-tellers like you. I don’t have a special needs child so you rocked my foundation this morning. You put a pair of perspectacles (as Glennon of Momastery says) on my eyes that I didn’t realize I needed. Thank you! I just want to come to your house and give you the much needed break you deserve! I appreciate your open vulnerability. Living in NZ, I can’t get to you to help (I wish I could) but I will keep you in my thoughts and prayers. You’ve touched my heart.

    • Jessie says

      Thank you so much Dee! I so appreciate you taking the time to read and comment. Also thank you so much for your thoughts and prayers.

  13. Eilish Leeuwestein says

    Sitting here doing some research on a 5 min talk I am supposed to give to our church children’s ministry group re children with disabilities that look “normal”, and how best to support them…and stumbled across your page. Oh Jesse, your post re what we don’t say…so hits to the mark, that I am overwhelmed. I thought I was the only one that felt this way, every time a friend posted. My husband and I have full custody of our 5 yr old grandson who is FASD ARND. Certainly not where we thought we’d be at this stage in life, but oh my word, I would NOT trade this ride with our sweet child for anything. I am learning to hang in, hold on and look UP!!! Thanks for being transparent and encouraging others thru your writing….

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