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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Comments

  1. says

    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.

    • Ellen Stumbo says

      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.

  2. Sally says

    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

    • Ellen Stumbo says

      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!

  3. Paula Smith says

    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.

    • says

      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!

  4. says

    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.

    • Ellen Stumbo says

      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!

  5. Wayne says

    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

  6. says

    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.

  7. Nancy J. Smith says

    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”.

    • Ellen Stumbo says

      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!

  8. southmomto7 says

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

  9. says

    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

    • Ellen Stumbo says

      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!

  10. Madeline says

    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.

    • Ellen Stumbo says

      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!

  11. Lori Orrico says

    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

  12. Sandy says

    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.

  13. says

    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 :)

    • Ellen Stumbo says

      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.

  14. says

    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

  15. Jennie says

    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.

    • Ellen Stumbo says

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

  16. Jenn K says

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

  17. cynthia moore says

    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!!

  18. Belle says

    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. :)

    • Ellen Stumbo says

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

  19. says

    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.

  20. Liz Baker says

    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.

  21. AL says

    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.

    • Ellen Stumbo says

      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!

  22. says

    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.

  23. says

    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.

  24. says

    Thank you for writing this. Once again, you’ve managed to pull at my heart strings. I have experienced so many of these emotions. Only, I rarely consider myself “selfless” and “admirable” because I tend to complain about the hardships more than I care to admit.

    It is a lonely journey, indeed, even though we are all in this together – in many ways, we are very much alone. Even the next person raising a child with special needs can never truly understand the other’s situation since they are all so different, so complex, and so unbelievable at times. I often ask myself the very question I wish others would not ask me, “How does she do it?”

    I appreciate that you see me. I see you too. (That’s why I keep coming back here!)

    • Ellen Stumbo says

      A journey of a lifetime! And I agree with you, many special needs families feel isolated, and while it is not applicable to all, many do. This is one of the main messages I bring to the church (when I am invited to speak) church should not be a place of isolation, but where our families are accepted, embraces, and celebrated :)

  25. says

    My sister-on-law posted an article from your blog and I started searching through and reading through some of the articles. Thank you so much for sharing and writing your and other’s experiences. I too know how it feels and it is nice to be “seen”. I do feel very invisible at times. I love how the internet has connected me with so many other mothers out there that have similar situations to me. I started a blog myself to help share and make aware with others what it is like to have 2 sons with autism. Thanks again and keep posting and keep keeping on!

  26. says

    I needed this today. My Special Needs, Medically Fragile, Amazing daughter, Jessica passed away almost 4 years ago. She was born with severe complex heart defects, lung & GI issues. She wasn’t expected to survive childhood yet she lived to be 22 years old.

    Jessica underwent 5 heart surgeries starting when she was just a few months old, had complications including 2 strokes (during separate heart surgeries) endured many other surgeries, complications, procedures and hospitalizations. It seemed that she had yet another medical problem at every turn. The first stroke was in the speech are of the brain and caused her to have a lot of difficulty forming words & her right side was weakened. We taught her sign language and I worked with her every waking moment on her speech and she learned to talk so well we couldn’t get her to stop! ;-) The 2nd stroke affected 4 other areas of her brain and she was blind and her left side was paralyzed. She was barely 3 years old and had just learned to walk and climb stairs. We had to start all over again and thank goodness for the miracles that God blessed her eye to see again. She wore glasses but she could see!

    She was also born with DiGeorge Syndrome and was on oxygen and in a wheelchair due to her heart & lung issues. She never progressed past the level of a 7 – 8 year old.

    I have also raised 3 heart-healthy sons but they have their own issues including ADD, ADHD, Aspergers, depression, anxiety, asthma, arthritis & fibromyalgia. I also have arthritis and fibromyalgia so my health is not very good.

    I spent a good part of those 22 years feeling invisible. Not just to strangers but to family and so-called friends. When my daughter became too ill to go out much we both felt invisible. It wasn’t until she was dying that certain people came to her aide. Others ran the other way.

    Now that my daughter is no longer here and all but one of my sons are grown I’m having a difficult time figuring out where I fit in. I had a “little girl” for 22 years and suddenly my children are gone and I’m turning 50 years old. I feel more invisible than ever.

    I am volunteering for a couple of great organizations and helping to spread CHD (congenital heart defects) awareness which keeps me busy. I offer support to other special needs/CHD parents online and to a few locally but somehow I don’t quite fit in because my specially-abled daughter is not here with me.

    Thank you for seeing me. Thank you for your wonderful blog and for sharing your story and for being a voice for so many of us special needs parents. I have started blogging again since the death of my beautiful, amazing daughter and your messages are encouraging me to continue to blog even more. I saw your post “CONFESSIONS OF A SPECIAL NEEDS PARENT: THE HARD THINGS” on a friend’s FB timeline and came to read it. I couldn’t have said it better myself and the only thing I would have added was my experience with knowing that my child would definitely die young from her heart and GI defects. I felt like I was holding my breath for 22 years all the while trying to remember every smile, hug, giggle and every moment we had together.

    I hope that you get many, many years of love, laughter and hugs from your beautiful daughter.

    • Ellen Stumbo says

      Nancy, I see you, and you are beautiful! Thank you for sharing about your daughter, your life, your hardships. I wish I could reach across the screen and give yo a hug. You are definitely not invisible, I see you.

  27. says

    I am a writer living in Los Angeles who also has a now nineteen year old daughter with severe disabilities. I’ve been in “this world” for a very long time and have only rarely read such empathetic words that also avoid all the cliches that — frankly — drive me nuts! Thank you for your beautiful voice — I’ve shared this on my Facebook page and have already gotten a tremendous response. I look forward to coming here and reading more of your writing! Thank you again!

  28. Tim Zdrazil says

    In my 19 years (Zachary is 19) of this strange and confusing world I have built some pretty impressive walls. Walls that only a spare few have ever seen thru or frankly gotten behind when it comes to Z. With 3 very simple everyday words, you destroyed 19 years of bulk works, battlements, and towers. I don’t know if I want to hug you or hate you, but clearly I needed to know that you see me…. and see me you did…. i will spend most of the next few hours trying to stop the flood pouring out of me at the moment… thank you very much for seeing me today… i needed it at some deep level more than i can properly describe… and as others have said… I see you too… peace

    • Ellen Stumbo says

      Yes, I see you, and thank you for seeing me too.

      And thank you for taking the time to leave a comment, and for your words, thank you.

  29. Eric says

    No. I’m invisible. I have no real friends anymore. I (we) are never invited to dinner, or to a private social event. My family trivializes my situation & thinks I choose to be poor, tired, & lonely. They keep their distance because they don’t want to know the truth. They blame me for his odd behavior. If I sleep late on the 4 days a month he goes to his moms I’m “lazy.” No woman wants me upon knowing I have a disabled child, this is 100% of the time. I know how this will play out, my need for love wont ever be met. Doesn’t matter that I am good looking, cook, am educated, talented, & responsible. Trust me, it doesn’t matter. I am restricted in hours I can work, employers don’t understand or care. I would like to study for a post grad degree but finding help is impossible, I can’t do it alone. This isn’t me being defeated, I’m just being realistic. I work & take care of my son. It’s hard, & I don’t get any appreciation. This has been life for years. Services are never fulfilled, so respite care is just a carrot thats dangled out there.

    • Ellen Stumbo says

      Eric, I am so sorry that you are so isolated. But yes, yes I do see you! I see you now, as you have shared your story. I hear your pain. And all those negative messages that you hear, know that that is not the person I see. And, if you do need respite, let’s see if we can find a church that hosts “Nathaniel’s Hope” in your area. http://www.nathanielshope.org/

  30. Eric says

    I don’t just feel isolated I am isolated. I could reddily substanciate my claim both logically & philosophically. I am overlooked because I do the right thing raising my son. I do my best to be a good honest person all the time. I make mistakes but I am an honest guy I work all day & take care of him all night. It’s intense. Over time it gets worse. I don’t see it getting better. I could write a thesis if you doubt me. But I doubt it. I’m so f***ed & any real contemplation confirms this.

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