To the Sibling of a Child with Special Needs

A Letter to the Sibling of a Child with Special Needs - jenniferajanes.com

To the Sibling of a Child with Special Needs

You’re on my heart more than you know. I know sometimes you feel like your sibling gets all the attention and I don’t notice you, but it’s not true. Entire days go by that I ache because I am so tied up in dealing with the newest symptoms, medications, and endless consultations with specialists and therapists that I don’t have time to sit down and talk with you, listen to you, like I really want to.

I see the tears you cry when a new set of symptoms means seeing another specialist, and we don’t know how many times we’ll have to travel to get to an appointment there, how many years we’ll need check-ups with that particular specialty.

I see your frustration and sadness when you witness another meltdown, are told about another surgery, or have to endure your sibling being in the hospital yet again. I see your struggle to help out when you’re asked to in situations where your dad and I aren’t around and other adults ask you to step in when they don’t know what to do.

Just let me say this:

You’re a child. You’ve had to take on far too many “adult” responsibilities and grow up way too fast already. I’m already wondering if you’ll end up being the one responsible for your sibling after your daddy and I are gone, and how you will handle that. Please enjoy being a child and let me take the burdens I can remove from your shoulders. They’re far too heavy for you. I’ve said it before, and I’ll say it again: When something happens and adults turn to you, do immediate damage control and send them to get us. You are not responsible for handling the situation alone.

You are loved more than you can imagine. I see you, I see your pain, and I see the sacrifices you make every day—to not rock the boat, to not cause us any trouble, and to help in every way possible. I love you for trying to be the “perfect” child and not cause your daddy and me more stress. Please see You’re a child. above and know that we don’t expect perfection. We don’t expect you to be able to avert every meltdown. We love you exactly as you are, mistakes and all.

I love who you’re becoming. Despite the frustration, anger, sadness, and other negative feelings you experience from time to time, I love who you’re becoming. I see your compassion, kindness, and sensitivity to others’ feelings. You are wise beyond your years. God is going to use the experiences that cause you the most pain now to continue developing character traits in you that will be invaluable to you both now and as an adult.

I love your love for your sibling. I am always amazed at how you are the first to defend your sibling when someone says something unkind. I love how you play and share life together. Although at times your hurt is deep, your love is deeper, and I am so grateful for that.

I’m sorry. For all the times you’ve felt neglected, unseen, unloved, or unwanted, I’m sorry. Please forgive me. I am making an effort to find ways to spend more alone time with you—both in little moments we can steal at home and in times we can go out together for a soft drink, meal, or to browse our favorite stores. Balancing everything gets difficult in certain seasons, and I am trying to get better at it.

You are amazing. And don’t you ever forget it.

I’m here for you. I love you every bit as much as your sibling, and I want you to know that I’m here for you too. We only get one chance at your childhood. Let’s put the mistakes of the past behind us and make the most of every moment!

Love always,

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To the Sibling of a Child with Special Needs - jenniferajanes.com

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64 Responses to To the Sibling of a Child with Special Needs

  1. Beth Mora says:

    Beautiful Jennifer!

  2. Kerith Stull says:

    My girls are 18 and 20 years old. I wish I have these simple, beautiful words to share with my older daughter when she was younger. We’ve talked often enough, but sometimes I wonder if that was ever enough. Thanks for sharing and reminding me that we still might have LOTS more talking to do!

  3. This is a wonderful tribute to the kids who don’t get the attention. Simply because there is a sibling who is soaking it up. Through no fault of their own! Because they have a problem. That needs constant attention. Lovely post

  4. Jamie says:

    Thank you for this! I’m in the opposite position…I’m was the child with special needs and I often wondered if my little brother felt neglected.

  5. Rebekah says:

    Oh, I appreciate this today. We’ve having some of these exact issues in our home right now.
    Thank you for this beautiful, heartfelt message to all our kids!

  6. Thank you so much for this . My baby girl is only 15 months and sibling to her 3 year old brother whom is on the spectrum. At her tender age we are already seeing where she is far advance in some areas than he is at 3 . It breaks my heart . It also breaks my heart because she often times gets put on the back burner just as your story tells it . I don’t know what I’m doing and I don’t know if I’m not screwing them both up . But I do know that I love them both to pieces and I hope my daughter grows up not carrying this heavy burden .
    Thank you
    Heather Caruso
    Mom , Wife , Photographer
    Long Island , New York

    • Your love and doing your best every day to do what’s best for both of them will see all of you through! We’re human too and can only do so much. God carries us the rest of the way.

  7. Pat Wiegand says:

    My kid’s are now adults each one is wonderful but, I must say my oldest who adored her disabled brother has grown up to be the most patient, loving, giving selfless person I know. I’m sure she had her moment’s as a child when she felt left out . I believe with my whole heart everything she felt every kindness she showed her brother every time she defended the disabled has made her the amazing daughter and mother she has become. I love her more then life itself thank you for being you
    Love forever & always

  8. Donna Young says:

    God is good

  9. I understand why this post has gone viral. You’ve said so beautifully what must be on every parent’s who is a similar situation.

  10. You are such a thoughtful mother and person. Each of your children has just the right mama! xox

  11. Valerie says:

    Wow thank you much this mean a lot too me nd my families….

  12. Carmen says:

    Wonderful letter. Made me cry. You have two “special” daughters, and I love them both. This is a beautiful tribute to both of them and a beautiful tribute to all children in this situation. Love you. <3

  13. Astrid says:

    I understand your kind intentions. I imagine it is tough beign a sibling of a special needs child. What I want to ask is, can you write some kind of letter expressing your understanding of the pain and frustration the special needs chidl goes through? You know, siblings see all the attention the special needs kid gets as pure attetnion, but the special needs kid sees it all as what it is, going to the doctor, therapy, etc. I know my sister was Always jealous of all the attention I got, but then again now I’m jealous of her because I know for a fact she is the more loved child (which is in part due to my udnaignosed autism and its behavioral challenges as a child).

    • I might do that at some point. There is certainly jealousy between the siblings, and you’re right when you say that the one with special needs gets frustrated and angry because of all the doctor appointments, therapy sessions, etc. I am sorry that you feel that your sibling is more loved than you are and that you were unable to get an early diagnosis to bring understanding to your situation.

      Thank you again for the suggestion. I’m adding it to my list of blog post ideas.

  14. Lauren says:

    This makes me cry. I have three girls 7,3 and 2. My baby is the special needs child. I see my oldest having to be my grown up. Esp with a husband who is gone all the time (military). I feel like I let her down a lot. I’m going to read this to her. Thank you

  15. This is absolutely beautiful. I am the Director of a group called IR4 Siblings (I Run for Siblings, an extension of IR4 – http://www.whoirun4.com). Here, we honor, recognize and appreciate the ‘unsung heroes’; the siblings of special needs children. This post was shared several times in our groups over the last few days.

    Runners/athletes are matched with a sibling and dedicate their activity to them. It’s more about the mutual inspiration and connection than the miles that are run. We’re always looking for more siblings, which become honorary ‘coaches!’

    Please feel free to share as you wish, and we invite parents and runners alike, as we continue to grow.

    Sign up links –> http://www.facebook.com/groups/ir4Siblings
    Buddy registration form –> http://www.tinyurl.com/ir4-SiblingBuddy
    Runner registration form –> http://www.tinyurl.com/ir4-SiblingRunner

    Thank you so much for putting this out there!
    Kindest regards,
    Melanie Giglia

    • Thank you for all the wonderful information, Melanie! I just had a friend recommend this to me, and I was going to do some research to see about signing my daughters up. Thank you for everything you do to make siblings and children of special needs realize just how special they are!

  16. Nicole Fusco says:

    As the sibling of someone with special needs, I’d like to thank you for your letter. I experienced many of these things growing up. It’s rare that someone recognizes the struggle of growing up in that environment. When your sibling is disabled, you often become invisible, known only as (insert name here)’s sister/brother. Until I left for college, that was how I introduced myself to people or reminded them of my identity, because my brother was so unforgettable, while I faded into the background. My parents did the best that they could, but there are only 24 hours in a day. I just want you to know how much I appreciated this post.

    • Thank you for those kind words, Nicole. I am sorry for the pain you experienced as a sibling. I hope you and your family can experience some good discussions and healing as a result of this letter. God bless you.

  17. Leslie says:

    Oh, Jennifer, what a beautiful post– and how pertinent it is for all of us, whether we have a special needs child or not, we certainly know a family who does. May we all minister better to those who need these reminders! Love you, friend, and I am praying for you!

    • Thank you for the words of encouragement and the prayers, Leslie! They are always needed and appreciated. I agree that we all need to do a better job of ministering to special needs families (and other families) who are hurting. I pray that this letter will open discussions in some of those families and be used of God to start the healing process.

  18. Beautiful letter, friend. I am sharing it all over as I believe in my heart that these words will resonate with many!

  19. Jolene Philo says:

    This is beautiful, Jennifer. Thank you for adding it to DifferentDream.com’s Tuesday link up.

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  21. Maryanne says:

    I didn’t care for this at all I have a daughter that has cerebral palsy, she is 19 years old and can not do anything on her own. I have a 21 year old son and a 24 year old daughter. My children always tell me they had the best childhood. We never stopped doing anything because of my special need daughter. My husband coached my kids teams. My special needs daughter and I never missed my sons basketball game 4 years of highschool basketball, they said she was the teams number one fan! I also had stage 3 breast cancer when my kids were 8, 10, and 12 and that didn’t stop us! I guess Gos is really good because he gave me what I needed to raise my children. I posted this on my daughters Facebook wall and asked her what she thought and this is what she said…….After reading this I can say that I truly have a wonderful mother. You did a beautiful job at balancing the extra responsibilities that came along with having a child with special needs and the normal responsibilities that came with being a good mother. I would most certainly agree that being a sibling of a special needs child does make you grow up a bit faster and have more responsibilities than your average kid but if anything that just helped shape who I am today and I can’t say that’s a bad thing. Like I’ve always said, having Mary in my life has only made me a better person and I couldn’t imagine having things any other way. I feel as if you make it sound all doom and gloom, I would never change my family for a second, God gave me a girl,boy, and an Angel! What more could I want, my Angel taught me so many wonderful things the biggest thing is what is important in life and uncontitional love. Everyone has struggles in life and there are far more crucial things that family’s go through. I beleive Love conquers all!

  22. Annie says:

    I just wanted to thank you for these words. I have written this letter in my head so many times and felt my daughter just wouldn’t understand yet. She carries such a heavy load and I want her to know how amazing she is. I just may have to print this and pack it away to read to her.

  23. Lena says:

    Mary Anne, I have to say, I am overwhelmed by the way your comment sings your praises with unicorns and rainbows. I pray I am misunderstanding.

    This family is amazing and they don’t let special needs stop them from doing anything. Unfortunately, though we are not all independently wealthy and the cost of raising special needs children, for most people, does prevent us from doing other things with our non special needs children. I assure you, the author of this post doesn’t sit around all doom and gloom. They are praising God through every storm, but at the ripe old age of 11, it is HARD to see that. This letter was written to her precious and beautiful daughter, and mine, and yours when she was younger. I would love to have known what your daughter would have said when she was younger, and your family was going through such difficult trials.

  24. As the spouse of a man w/ a chronic health condition that will take him to an early grave – I often feel lost in the noise. Folks are so buys asking how he is, no one thinks to acknowledge that it takes a toll on me, or our boys, too.

    Our sons never miss a beat in life even tho’ their dad is rarely involved. They carry on and seem unaffected, but the older they have gotten, the more they have been willing to admit they knew our life was ‘different’. Further, they grieved that difference privately until they felt safe to admit it to me in private moments of shared grief for what will never be, what could have been, and why.

    Love does conquer all, Maryanne, but that does not mean we don’t live in the trenches while it does. I wonder if your children will ever feel safe to be vulnerable with you because you seem unwilling to say, “Yes, this journey is worth it, but it is hard. It is hard and sometimes can be lonely too.”

    It is a sign of strength to be transparent and vulnerable in admitting our frailties. It doesn’t mean we are dishonoring our struggling family members. In fact, in my observations of almost 60 yrs on this earth, the ‘weaker’ ones are the ones who insist there is no weakness in their armor.

    Best of luck to you, Jennifer. You are doing a wonderful thing to acknowledge your girls each live different lives that impact the other in unique ways. <3

  25. Beth says:

    Thank you for writing this. I have to remind myself that God placed both of my children in our family for a reason. They both benefit from each other. I have to trust God in this.

  26. Merrick Bartlett says:

    Oh my, how were you able to read my mind? These are my thoughts each and every day. My son being my special needs kiddo and his little sister who is his best friend, best defender and quite possibly his best teacher. I see her actually parenting him. It worries me so. We know what she’s been through. This fall, i was finally able to get her to dance lessons and even into girl scouts. I told her that, yes finally, mommy will be taking Her around to places instead of all of us taking him to therapies. I will Never forget the look in her eyes. She couldn’t believe it. I had to reassure her that it was true. .and her smile was one of excitement, joy, and. ..relief.
    Thank you for this. I’m going to read it to her when we snuggle down together at night. Many times. It’s just what we all need!
    Merrick

    • Your comment made me cry, Merrick. Thank you so much for sharing your thoughts. I am blessed that these words will bless both you and your precious daughter! I hope this is the beginning of many wonderful days for all of you.

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  28. Kathleen says:

    Such a sweet letter. My kids are 11 months apart my oldest (a son) has autism and my youngest (a daughter) she is the best sister I could ever ask for him. I feel this way a lot . Made me cry.

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  30. Kristina says:

    This is beautiful! Hit the nail right on the head. I’ve said some of these exact same things to my son. It’s absolutely heartbreaking to watch them go through this. All too often we only focus on our children with special needs & their pain & forget that our other children our feeling the repurcussions of our special needs child’s difficulties & actions as well.

  31. Thanks for sharing this beautiful outpouring of love to your special needs child. What a wonderful example you have set.

  32. Emma says:

    This made my heart break as I thought about my oldest son and the challenges he faces with his younger brother’s special needs. I often think about him and all that he has to endure as just an 8 year old boy. He is just a child too, afterall. Thank you for reminding me there are other mothers out there like me.

  33. Pres says:

    Thanks for this it really helps

  34. Jen says:

    I am blessed that my older son is naturally patient, intuitive and kind. My younger special needs son steals any room and finds a way to be the center of attention. I make special outings with my older son, anything I can do to give him some one on one and explore his interests. It is absolutely an effort and worth it. My obvious fear is not knowing what to expect for my younger son, and for my older son to possibly be a care giver when my husband and I pass. And secretly that I will not push hard enough for my older son to reach his maximum potential because I am so busy, v push him too hard with too much pressure because I know he may need to step into my shoes. I tell them that together they are stronger than they are apart, that family is the most important thing, and that they are loved always.

  35. Sarah says:

    As I read this I have just put my little brother and sister to bed after making them dinner and bathing them. Mom and dad are at hospital with my other little sister again. Its only February and this is the third time this year. Just reading this has made everything so much better. There is nothing worse then being the unseen child. Or having to be the adult when you are far to young for that. Its nice be reminded that we are seen, that our parents do care, that its okay not to be perfect. When I had to come home because sissy is sick again I was mad. I knew it meant a night of me telling the twins that mom and dad would not come home tonight and no I dont know if they will be hear in the morning. It meant helping with homework and bedtime stories. It meant that after the twins went to bed that I would have to rush through my own homework with no one to help me. It would mean getting up early so that I can get the twins ready for school because mom and dad might not be home by morning and even if they were they would be to tired to wrestle two squirming kids into clean cloths and out the door in time for school. I meant that once again I would be alone. So thank you for saying what at this moment mom and dad dont have time to say because sissy needs them more then I do right now. Thank you for the reminder!

    • You are so welcome, Sarah. I hope everything is much better for you and your family now. Take care of yourself even as you try to help your parents and siblings. When things calm down, you might consider reading this with your parents. Maybe it will open up a discussion for all of you that will help you to process and deal with everything that’s going on – and improve your relationship.

  36. shannon renea says:

    Hello,

    Im 23 years old,y name is Shannon Renea. I have one sibling.
    He’s a 21 year old with Cerebral palsy and is quadriplegic. My childhood was filled with Dr appointments, surgery after surgery, water therapies, speech therapies and many more.
    There wasn’t and still isn’t much my brother and I can do together that the average brother and sister can do. Play basketball, or walking down the street. Instead, as a child I would get whistles and different things like that and help my brother blow them. I would verbally try to teach him how to blow a whistle. Sometimes I would attach his tray to his wheelchair and pour Lego’s onto the tray. And help teach him how to use his hands and pick them up and put them into a bowl. I always wanted to help him do things, and as kids this was how my brother and I bonded and had fun.
    Being a sibling of a handicapped kid can be difficult at times BC you spend so much time doing unordinary things that the average brother and sister wouldn’t do. But its not bad thing. In fact, it has taught me to be strong and see life from a different perspective.
    A lot of peoe don’t realize what all goes on in the life of a handicapped child. For instance, a trip to Walmart.
    Let’s say its raining, we cant just jog to the car, and jump in and go.
    There is a process. A process to everything that you do. Something as simple as going to walmart.
    You must open the van, let the loft down, get the wheelchair in there, and strapped down.
    Then you can go. Once your at Walmart, you must un latch the straps, get the wheelchair out, and push it In the store if the chair is manual.
    Wait. That’s not all.
    You must pay very close attention, close attention to the aisles you go down or want to go down. Will the wheelchair fit down it? Is the clothes going to get hung up on the chair? Do you or can you move some of the racks around so the chair will fit?
    But even tho, it can get difficult, it’s a blessing having a sibling with special needs. It most definitely will make you a mature adult and let you see a different life. You grow a heart for people and love helpong others BC you know what it’s like.
    Now, I’m 23 And in college. I’m going for Occupational Therapy to help other people with special needs, and I must say

    I loved this article. It was touching and made me teary eyed. I thank the author of this article very much. It was absolutely heart felt. Iam that sibling of a special needs child and that article made my entire day. Thank you.

    • Thank you so much for your kind words about the letter, and thank you for sharing your beautiful experience of life with your sibling! Your compassion will make you an excellent occupational therapist, I’m sure. I wish you and your sibling all the best.

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