Special needs parents, you are not invisible, I see you

Having a child with a disability can be difficult. There are moments you wonder if anyone will ever understand or get what it is like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.

But you are not. Today, I want to tell you that I see you.

I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.

I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.

I see you at the therapy office programming your child’s speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button, I hear the computer’s voice say, “I farted.” You are funny.

I see you at the support group. New parents are visiting with their baby, they seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won’t always be easy, but it will be good. You are compassionate.

I see you walking into the school for the third time this school year. A binder full of notes, lists, and goals. Your don’t feel your child’s team is following the IEP, and you won’t give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.

I see you at the hospital, a place you are too familiar with. Tubes, machines, tests, and specialists. Your child’s feeding tube is the least of your concerns. You are brave.

I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.

I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are after a baby comes home. You are generous.

I see you at social gatherings where well meaning people ask ignorant questions about your child or her disability, they make hurtful comments, or fail to recognize that your child is a child first. You don’t get angry, you don’t yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner and thank them for their concerns. You are gracious.

I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.

These qualities you display are precious gifts you give to your child and to those around you, they don’t go unnoticed…I see you.

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68 Comments

  • Reply April 4, 2013

    Karen

    Beautifully written. Thank you. :)

  • Reply April 4, 2013

    Anna Theurer

    I see you too. Yes, you and I are not alone. Beautiful post and comforting words!

    • Reply April 4, 2013

      Ellen Stumbo

      Thank you Anna :)

      • Reply April 13, 2013

        brandi

        That was the most beautiful, moving, perfectly worded anything I’ve ever read. You truly get it.

  • Reply April 5, 2013

    Missy

    love this post x

  • Reply April 5, 2013

    Jodie

    I needed this today. So, so much. I do feel invisible at times. It’s okay. I worry more that my children seem invisible to others.

    • Reply April 5, 2013

      Ellen Stumbo

      Jodie, I see you! And I agree with you, I don’t want my kids to be invisible to others, they have talents, gifts, abilities and personalities that shine if people give them a chance.

  • Reply April 5, 2013

    Ronda Stumbo

    Great writing Ellen! Loved it. Ronda

  • Reply April 5, 2013

    Anna

    Great new look! I love this. Thank you for seeing.

  • Reply April 5, 2013

    Lauri St Pierre

    Loved this. Beautifully written. Thank you.

  • Reply April 5, 2013

    Sally

    Your writing is incredible – been following you for a while. Some of your topics have me thinking for days! Sadly, still not writing myself yet, but soon… Thank you so much for inspiring ideas and powerful words x

    • Reply April 5, 2013

      Ellen Stumbo

      Sally, thank you so much for such kind words, and let me know when you start writing, or if I can help get you started with a blog!

  • Reply April 5, 2013

    Paula Smith

    This was so touching and exceptionally moving, especially for those of us who have a grandchild with special needs. We watch our son or daughter parent their child and wish we could make their journey easier, but know in our hearts that we can’t even begin to understand what they face every day. We admire them and love them and try to support them, but it seems so small compared to what they themselves must need. Thank you so much for giving us a glimpse into their world.

    • Reply April 6, 2013

      Morgan

      Paula, I have a child w/ Down syndrome and have a mom that is the most wonderful grandma in the world. Let me tell you that your child appreciates you so much. That you recognize how hard it is for your child and that you do everything you can to help means more than you’ll ever know. NEVER be afraid to ask questions about how he/she is doing/feeling because we (moms) do a good job of acting like we’re just fine, but over the past 4 years I’ve learned that grief comes in waves and I’m always in need of my mom to listen. HUGS!

      And Ellen, thank you! What a beautiful post. This brought to mind so many of the other mommas of kids w/ special needs that I’ve met along the way. They are amongst the most beautiful people I know, and this post celebrates them. I would love to feature this on my blog as well. LMK if you’re interested. Thank you!

  • Reply April 5, 2013

    Amy

    Very nice article Ellen! I shared with my mom’s group.

  • Reply April 6, 2013

    Autumn Timko

    Thank you. A thousand times, thank you. This makes me cry every time I read it.

  • Reply April 7, 2013

    Nicole

    What a beautiful post. As a mother of 3 children, one with Spina Bifida it was hard to read your words and not cry a little. Not because I was sad, but because your words were so true and honest. It’s hard to really share what I’m feeling some days out of fear of completely falling apart. Thank you for sharing with the world a peek into our world.

    • Reply April 9, 2013

      Ellen Stumbo

      You are welcome Nicole. You do so much for your child, I know how trying some days can be, but I do, I see you!

  • Reply April 7, 2013

    Tracy

    Thank you. This is beautiful

  • Reply April 7, 2013

    Brandy

    Thank you! You made me cry, in a good way. :)

  • I see all of you, too. :)

    • Reply April 9, 2013

      Ellen Stumbo

      Thank you Amy!

  • Reply April 7, 2013

    Wayne

    While one brain cell in my head sometimes wonders what could have been, what should have been- it is drowned out by all the others screaming “look at what we’ve learned, look at what we’ve accomplished, look at all that we see that others take for granted or expect to be an entitlement- look how his peers took him in and pulled him from going into the ditch (8th grade students befriend Autistic/Special needs student- say enough to bullying, 4 years of friendship- Senior year they nominate him Homecoming king.
    Reference
    http://www.clickondetroit.com/community/Linden-High-School-friends-make-autistic-teen-s-senior-year-memorable/-/2207168/17008128/-/vv847j/-/index.html

    http://www.freep.com/article/20121005/NEWS06/121005077?fb_action_ids=275223652594591&fb_action_types=og.recommends&fb_ref=artsharetop&fb_source=aggregation&fb_aggregation_id=246965925417366

    I have learned so much about life, and people and the power of a simple ‘friend’ – true friend to my son- someone who can see through the fog- and see a kid who wants what all othere want- acceptance.
    (We) see life in simplicity- No one to impress, no trophy to win, no heads to step on, no cutting in line, no vanity, no me-me-me

    (We) Have children that are so innocent and know more about love, compassion, sharing, equality and consideration then any of their peers, and in many cases the parents of their peers.

    It is a journey that, while I may not wish it on anyone else, it’s something that I wouldn’t give up or relive differently. In a way, I guess it’s a blessing in disguise

    • Reply April 14, 2013

      Britt

      That’s absolutely wonderful to hear! You give me hope. Mother of 3yr beautiful daughter with autism.

  • Reply April 7, 2013

    amanda

    thank you for that beautiful recognition special needs parents can always use some uplifting words.

    • Reply April 9, 2013

      Ellen Stumbo

      Yes Amanda, you do so much for your kids, and I see you!

  • Reply April 8, 2013

    Jo Lynn

    This is so beautiful. It made me cry and truly touched my heart. Thanks for seeing me, yourself, and all the others. Thank you for putting such beautiful and encouraging words to these difficult moments that showcase this life as a special needs parent.

    • Reply April 9, 2013

      Ellen Stumbo

      Thank you Jo Lynn. I see you!

  • Reply April 8, 2013

    Nancy J. Smith

    After reading this piece with tears in my eyes, I realized how selfish I was.
    My life wasn’t going according to my plan, but it was moving along OK. You made me think a little more about the life of my granddaughter’s mom. A great and caring person, a super mom and a good friend. Thanks for reminding me, I need to tell her more often how great she is and what a great job she’s doing with “our little girl”.

    • Reply April 9, 2013

      Ellen Stumbo

      Nancy, don’t think yourself as selfish, I think often we just don’t realize what it is like to walk in someone’s shoes that are not our own, even if it is family. What I see here, is someone that will become a gift to her granddaughter’s mom. your words will mean the world to her, and you will make a huge difference in her life. What a blessing she has in you!

  • Reply April 8, 2013

    southmomto7

    thanks for a well written story…our blessing has FX Syndrome and Autism…he is the light in the sometimes very dark world!! xxxxxxxxxxxxxxxxxx

    • Reply April 9, 2013

      Ellen Stumbo

      I am so glad you made your way here, and I agree, my kids have brightened my world.

  • Reply April 8, 2013

    Sarah

    I have felt like many parents I know feel segregated and left out but I have started a non profit organization to build playgrounds where children of all abilities can play side by side without feeling different. I felt like no one really understood what it was like to have a child who can’t do what their friends could do so I set out to change it. Feel free to visit our website or join our Facebook group. http://Www.facebook.com/groups/BigDreamsPlaygrounds

    • Reply April 9, 2013

      Ellen Stumbo

      Sarah!!! I need to connect with you! My husband and I are in the works to get inclusive playgrounds in all the schools in our community! So glad that you made your way here, it was meant to be!

  • Reply April 8, 2013

    Madeline

    I saw this several hours ago and bookmarked it to read after the kids are sleeping. I’m so glad I didn’t read it quickly then… it really deserves a thorough, tissue-box-at-the-ready read. (plus I’m glad I didn’t have to explain my tears to my kids!)
    Thank you! You have such a generous, compassionate heart to know that there are so many of us who needed to hear your message.
    I wish I had more time to develop deeper friendships with other parents of kids with special needs, and I wish more of my other friends could understand our lives more deeply.

    • Reply April 9, 2013

      Ellen Stumbo

      Madeline, you are so right. I do wish other people got it, but I think back to my own self, before I had kids with special needs, and although I took care of my friend’s daughter with Down syndrome, I just didn’t get it until I joined the club. Even then, I really struggled with my baby’s diagnosis. Now, my closest friends are parents that have kids with special needs. We have a bond, a connection, that is hard to describe. I am so glad that you were encouraged by this, because you do so much for your kids, every day, you are in the front lines of parenting, and also parenting a child with special needs. And you are beautiful!

  • Reply April 9, 2013

    Lori Orrico

    Thank you Ellen. Thank you for not only seeing me/us, but for validating what we do every single minute of every single day. SO appreciated! xo

  • Reply April 10, 2013

    Sandy

    Your writing definitely brought a smile to my face. My daughter is the biggest blessing in my life. She has made me a stronger person, a more compassionate person, and she has taught me about the kind of person I want to be. People always ask me, “How do you do it? Day after day, with all those doctors and therapists? Doesn’t it get tiring?” I always smile politely and say, “I do it because I am her mother… wouldn’t you do the same for YOUR child?” Trying to ‘walk a mile in someone else’s shoes’ is hard and special needs moms wear so many different shoes- combat boots for the fighters we have to be, sneakers for the running around we do, clown shoes so we can keep our sense of humor, and the list goes on and on.

    • Reply April 10, 2013

      Ellen Stumbo

      Sandy I love this! Yes, we wear many, many shoes!

  • Reply April 10, 2013

    Cindy Barclay

    Thank you Ellen- I know Jesus is always with me- that’s the only way I cope- but I forget that I can reach out to other mothers- encourage them and receive back their understanding and compassion too! hugs and blessings in this journey called life :)

    • Reply April 10, 2013

      Ellen Stumbo

      Cindy, one of the greatest gifts God has brought to my life through this journey are some amazing women and now dear friends. Yes, we need each other and we have such an incredible bond because of our children.

  • Reply April 11, 2013

    Katie Wetherbee

    Ellen…such wise, comforting words. Thank you for noticing beauty all around.

  • Reply April 14, 2013

    Anchel (@AnchelK)

    Such a beautiful, simple post Ellen. When I read it, it felt exactly like a big giant hug, which SO many of us could use. xoxo Anchel

  • Reply April 15, 2013

    Erin Corrado

    Very nice – it reminds me actually of my documentary title, I AM NOT INVISIBLE. This title refers to a poem the main subject of the film, Nicole Flynn, wrote and reads in the film. The poem is about how she wants the world to view her.

    Nicole 20 years old. She is an athlete, photographer, and self-advocate, and she also happens to have Down Syndrome. In her poem, she expresses how she wants the world to see her as an individual and not overlook her.

    If you want to check out more about it, there’s info, photos and clips here: http://www.indiegogo.com/projects/i-am-not-invisible–35?c=gallery

    - Erin

  • [...] over by all that Hollywood tells us Mother’s Day is supposed to be, the God of the universe sees us.   Just like He saw Hagar discarded and destitute in the desert, He is still the God who sees the [...]

  • Reply June 5, 2013

    Jennie

    This made me cry. Thank you so much for the beautiful words. I feel so alone and isolated a lot of the time, this eases the pain. Thank you.

    • Reply June 5, 2013

      Ellen Stumbo

      Jennie, I know what that feels like, but today be reminded that I do see, and you are not alone. Hugs.

  • Reply June 5, 2013

    Jenn K

    You have no idea how what you wrote was like a fresh wind blowing across me. Thank you for so much encouragement. <3

    • Reply June 5, 2013

      Ellen Stumbo

      Jenn, you are welcome, I am glad these words brought you encouragement. Hugs!

  • Reply June 5, 2013

    cynthia moore

    Thank you for reminding me that I am not invisible, I am not alone, and to let other people know that I too see them! I really needed to read this today. Thank you!!

    • Reply June 5, 2013

      Ellen Stumbo

      Thank you Cynthia, we all need to be reminded of this from time to time, don’t we?

  • Reply June 6, 2013

    Belle

    My daughter has told me so many times this school year that she feels invisible to her teachers and peers. She only had one friend this entire year. We had 5 IEPs trying to get teachers to understand that accommodations and modifications are the law. I know I have felt invisible at times and even though I have great friends whose children also have the same diagnosis, we all live across the US. Mostly I feel lonely. Thanks for taking away that feeling for a few minutes. :)

    • Reply June 6, 2013

      Ellen Stumbo

      Hugs Belle, it can be hard, especially when your child is older and they recognize they are treated different.

  • [...] writes beautifully and at the end of reading one of her posts you feel like she is a friend. “Special needs parents, you are not invisible, I see you” is one of my favorites. 1 of 10 Tagged: autism, Down Syndrome, kids with special [...]

    • Reply October 29, 2013

      Ellen Stumbo

      Wow, thank you for including me in such a great list of special needs bloggers!

  • Reply December 20, 2013

    TheJoyfulPalmer

    Ellen,

    This was lovely. I wanted to share an experience I had just last week when a stranger “saw” me.

    I’ve captured the experience as a thank you letter to this wonderful stranger.

    Dear Wonderful Human Being who loved me and my children,

    We were at the end of our visit to the Festival of Trees and everyone was tired and overwhelmed by the crowds. We rushed to make it on time and not everyone’s hair was combed.

    Mary’s shirt was stained with hot chocolate, and she had a saggy diaper. Jack is boycotting clothing and refused to wear anything but too-small pajama pants with camouflage moon boots.

    Benjie was trying to climb out of the backpack and was getting his chocolate sucker stuck in my hair.

    I had Maggie’s wheelchair, the double stroller and was wearing the backpack. I felt like some sort of strange little gypsy bus; the sort you give a wide berth to as you walk by.

    As I was trying to wipe up Maggie’s chocolate sucker drool from her face and chair, I heard you kneel down in front of Jack and start having a conversation. He wasn’t super polite because “going home” was the only thing on his mind, but you hung in there with him, just letting him be where he was.

    You asked about his brother and sisters. You told him stories about your little girls. You were kind, patient and genuinely interested. You spoke to everyone.

    When you stood to leave I touched you on the shoulder to say thank you and explain that my other children have been struggling because all the world seems to revolve around Maggie. Passing strangers and friends only take note of her.

    You asked if you could hug me, and I felt like spilling my guts about how Mary is literally pulling her hair out, and how Jack is convinced that his legs don’t work and the only thing he’s expecting for Christmas is a wheelchair, and how Bennie screams and is constantly putting himself between me and everyone else.

    But I didn’t, I just cried as you hugged me. And, you cried too.

    You didn’t judge the sticking up hair or the moon boots, the chocolate drool, the cranky impoliteness or the obvious struggle it is to manage the complexities of parenting this little circus. You accepted that what you could see at the moment was only one facet of the diamond that is our family, and you treated us as if we were shining brilliantly.

    If I can only give a portion of the generosity that you gave us last night, I’ll be a far better person and the world a better place.

    Thank you, dear stranger, for being such a wonderful human being.

    • Reply December 20, 2013

      Ellen Stumbo

      This is so beautiful! I sent you an email, would love to feature this letter, it touched my heart!

  • Reply December 20, 2013

    esther

    You see me! Thank you!!!

    • Reply December 20, 2013

      Ellen Stumbo

      Yes I do see you!

  • Reply December 21, 2013

    Jason Walters

    That is extremely kind of you Ellen. Thank you.

  • Reply December 22, 2013

    Liz Baker

    I am a Grandma of a beautiful Christmas Day boy with 18 q Syndrome. I read this beautiful written heartfelt piece and I saw my wonderful daughter,Georgina. I am so in awe of her as a Mother and as a person, just asI am in awe of every Mum who has a “special ” child. Special children mean special love. Our beautiful boy is the child of my heart.

    • Reply December 23, 2013

      Ellen Stumbo

      Liz, a happy birthday to your sweet boy! Thanks for leaving a comment and sharing about your family.

  • Reply December 26, 2013

    Stephs Two Girls

    SO love this post. Applies to many of my ‘newer’ friends. Thank you for writing this x

  • Reply February 22, 2014

    AL

    the most invisible person of all are special needs siblings. while everyone is feeling “inspired” by special needs kids and their parents, the non-special needs children in these families are essentially ignored, by society and most hurt fully their parents. please don’t forget your other children. please don’t let your special needs child completely take over. and please remember that your other children should feel safe to express their negative thoughts constructively.

    • Reply February 22, 2014

      Ellen Stumbo

      AL, I hear you, and I do see you too. I do write about the typical siblings, and how important it is to make sure they get special time with their parents. This post is written specifically for the parents, but thank you for expressing your feelings, because from your words I hear a need to reach out to the siblings as well. Thank you!

  • Reply March 22, 2014

    Krista Dearey

    Thank you! This is exactly what I needed to read today. It’s been one of those days…those “special needs” days that simply seems too hard…a day my son, Judah, seems to fuss more than laugh…a day his needs seem bigger than his victories…a day I wonder how much strength I have to keep going…or wonder how will I handle his needs when I have a newborn in 3 months… All the while considering my other 5 children and all their needs and desires. It’s sometimes a lonely journey. Thank you for writing such an encouraging post letting us know we are not alone.

    • Reply March 24, 2014

      Ellen Stumbo

      I am so glad this was encouraging to you Krista!

  • Reply April 15, 2014

    Mary H

    I cried after reading your article. It speaks a lot about how I feel as I go through each day with my child who has DS.

    Thank you for the lovely article.

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