Don't Forget About Me....Being a Special Needs Sibling

Nobody every talks about what a challenging road the siblings of children with special needs must navigate. Our daughter is showing us the way.

Last weekend, I hosted a PTO event at my daughter Molly's school.  I had planned it months before Brady's sudden type 1 diabetes diagnosis.  It was the last thing in the world I felt like doing after the emotional roller coaster we had been on. 

I had an amazing team of friends who offered to run the event.  But I had to go.  My friend asked, "What are you doing here? Go home. Take care of Brady. Get some rest-anything." But I looked over at my daughter, smiling from ear-to-ear because I had arrived and I knew there was only one place in the whole world I needed to be.  I came because it was important to my daughter.  I came because my daughter gives up so much and gives so much to her brother or because of her brother-that I knew, that making sure she knew how truly important she is in my life-was the only thing that mattered that evening.

I know what it is like to be a sibling of a child with special needs.  My younger sister is a remarkable woman with Down Syndrome.  I know that you can feel a little lost or left behind.  I know that you can grow to be resentful.  I also know, in my heart, that my parent's never meant to pay more attention to my sister Robin than the rest of us, but they just had to, because she required more attention. As a parent of a child with special needs,  I want to make sure Molly never feels that way...but I know there will be times she will. 

It is an inevitable part of being a sibling of a child with special needs.  At that same PTO event, I spent some time talking to a friend of mine who also has a sibling with special needs.  Her sister and mine have been good friends for years.  I realized I have never spoken to her about what it is like being sisters with such incredible and unique women like ours.  I was telling her about how hard my husband and I are trying to include Molly in Brady's care and how much we talk to her about Brady's special needs and unique challenges.  She complimented us. 

She and I talked about how hard it was to not feel like we were left out of our parent's affections a little because they had to spend so much time focused on our siblings.  We know that our parent's didn't care less about us...but as a child or teenager, and yes, even as an adult, it is hard to not feel that way a little bit. We discussed the days that were tough and the days when we felt that we were the only people in the world who could protect our sisters. I never want Molly to feel that her brother's special needs or challenges come ahead of any of her needs...big or small.  I want both of my children to feel equally "special" and equally deserving of our time and attention.  I want both of my children to believe in themselves....and each other.

Unfortunately, life is not always fair and even with the very best intentions, a child with special needs will always take up more time and attention than your other children.  As a parent of a child with special needs-with unique needs-I must make a conscience effort to make sure Molly's accomplishments-big and small-are always celebrated with the same sense of pride that we do when Brady makes those little strides....that we never treat as little. 

I have tried very hard to make sure Molly has things in her life that are all her own.  Things that make her feel good about who she is as an individual.  Things that make her forget-for a little bit-what her role in our family is and what her role will always be...that of her brother's protector. 

So Molly dances.  She dances a lot.  She loves dancing, and she is very good at it.  Her face lights up and her pride swells with each class.  I am amazed by her flexibility, her sense of rhythm and her ability to pick up routines so quickly, but mostly I am transported to that special place she has formed for herself, where life is pretty magical and music and dance are the only things that matter for a little while.  Sometimes, I want to tell her that I just don't have the energy or time or even patience to stop and watch...just one more dance...or that I have to feed Brady or keep an eye on Brady or give Brady a shot, but I don't.  I stop and take those few minutes and give them to my daughter because her smile and her gratitude tell me everything I need.  

My daughter is an exceptional little girl. She is wise beyond her seven years.  She is kinder than any adult I know.  She is fiercely protective of her brother...and her parents.  Her laugh makes anything better and when she loves you-you feel like you can do anything.  I know that because I feel that way, but I also know that, because when her precious little brother needs some reassurance he goes to her.  Brady goes to his big sister for a hug, for a smile, for a twirl on the dance floor, for a high five or a "great job Brady".... and for a voice. 

As soon as we got home from the hospital, with Brady's needles, medication, and more special needs...we tried to include Molly.  She wanted so very badly to take care of her brother.  She wanted so badly to feel the same worry and sense of responsibility we were experiencing.  Molly has been through many of her brother's hospital stays, going to a relative's house and trying not to worry, then learning to adapt when he comes home. 

Molly has helped us feed Brady when he couldn't do it or we couldn't do it.  She has sat and watched the same video over and over again with her brother because she was so excited that he finally wanted to cuddle up with her on the couch and do something together....just like any other set of siblings would do.  She has always been there for her brother.  She has always tried to understand his special needs, why he can't talk, why he needs extra time to accomplish little things so many others take for granted and why he was made just a little bit different than all her friend's brothers and sisters. 

With Brady's diabetes diagnosis...with this one more special need...Molly has jumped right in.  Over the last two weeks, our incredible daughter has become the number 1 "blood sugar tester" in our house.  Molly is not frightened by the needles and numbers.  She tests her brother's blood sugar at least once a day.  Her brother prefers her to both his parents.  My heart bursts with pride as I watch Brady stick out his little thumb and let his sister gently take it, so his blood sugar can be read.  She tells him good job and compliments the way he holds out his finger and she ends it...every time with a hug or a kiss.  Such a sad act...watching your son have his finger pricked and his blood sugar tested...has turned into such special moments between my children. 

I know that there will be times Molly feels left out.  I know there are times Molly will be mad at us because she thinks we are paying more attention to her brother.  I know there will come a day when I forget something that is important ot her because I am tending to Brady....but I also know that I will never forget about my daughter's own "special" needs...because all of our children have them and we must never forget to celebrate each and every one of those needs.

Click here to read Erin's latest blog about the constant worrying a special needs parent experiences. 

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Rachael Trieu February 22, 2012 at 04:52 PM
Oh Erin - You have done it again - I am totally choked up! Molly is amazing and so lucky to have you as a Mom (just as Robin is lucky to have such amazing siblings!).
Nancy Ronayne Webster February 22, 2012 at 07:42 PM
LOVE this one--touches my heart in multiple ways. You amaze me. Love, Nancy
Jacquie Zook Kobe February 23, 2012 at 02:19 AM
Beautiful, Erin! Truly beautiful! It has left me speechless!
Sue Lind February 23, 2012 at 07:21 AM
Since you are now officially members of the ARC of Macomb, check put the program that The Arc (Narional) is focusing on by partnering with the Siblings Leadership Network. It looks like an awesome resource/site. Here is the link http://www.thearc.org/page.aspx?pid=2661 And remember that there WILL be a time where Molly's unique needs will require more of your time and attention than Brady's. Right now it's his time, however, she is female and I have a feeling that when she is 15 and Brady is 12 and you are dealing with full blown teenage girl angst you may actually look back longingly at these simple days ;-)
Nancy Smith February 23, 2012 at 12:39 PM
My sister is almost 50 now, and due to special physical and mental needs always required more of my mother's time and attention. You shared the thoughts that I never allowed myself to express because I felt guilty....believed I was being selfish and not appreciative. So thank you for writing your story!
Mike Ronayne February 23, 2012 at 01:18 PM
Nancy W LeBlanc March 01, 2012 at 05:44 AM
I actually missed my daughter's 18th surgery (and last one for the past 6 years) out of town in order to take my son to his middle school orientation. One of us had to do it (hubby and me) and I am better at the educational stuff, so I did it. But you better believe I hauled butt to the hospital the second his orientation was over.
Jenny Long March 01, 2012 at 06:13 AM
Please look up my boys on Facebook Team Long Brothers my oldest son did an amazing thing for his younger brother who has mutiple disabilities he loves him so much please check it
Lori S March 01, 2012 at 10:48 AM
Very well done! I will have my neurotypical daughter read this so she knows she is not alone. Thanks for this!
Rene Taugner March 01, 2012 at 12:58 PM
I am bawling like a baby right now cuz this is something I strugle with every day. My daughter is 7 with Down Syndrome and my son is 15. He is so responsible, and school comes so easily for him that it is sometimes too easy to focus too much on his sister who has a lot of needs. And as a single mother I only have my son to turn to for help.
Larissa Maurice March 01, 2012 at 03:09 PM
*Tear* Beautiful! I felt like I was looking through the eyes of my 8 year old right now. She has a younger sister who is 5 with special needs and I know it's a struggle for her most days just to understand why she isn't like other kids. I do my best to explain, but i know she is only grasping a small percentage of the big picture. I'm a single parent and do the best I can to meet both of their needs, but I know deep down its usually more with my youngest daughter. Thank you for putting these Thoughts into words. It's nice to know I'm not the only one.
Rachel March 01, 2012 at 09:13 PM
Loved reading this! This is so true and a great reminder to me that though I have three children--and only 1 w/special needs--they are ALL special! Thanks for this post.
Judy Merrick Newell March 02, 2012 at 01:37 AM
As the mother of five children, the youngest being my son who was born with Down Syndrome I must say my other four children adored Matthew. They were alway arguing over who could take care of him. Even as grown children with their own families they wanted Matthew around as much as possible. He was very high functioning and loved going all places with them and he adored their children. The summer of 2010 while on vacation in Avalon, NJ, Matthew took a seizure that took his life. Needless to say we are all devistated. My other children started a foundation in his name called Matthew's Mission. All proceeds go to Special Needs Children. Sometime if you would like to read about this just go to Facebook and type in Matthew's Mission. Thanks for listening to a heartbroken mother.
Judy March 02, 2012 at 08:58 AM
What a very touching and thoughtful article!! It is incredible the way your own experience as a sibling to a sister with special needs has prepared you to be a wonderful and sensitive mother to your daughter and your son. Your experience in both of those roles as a sibling and a parent to a special needs child is probably fairly unusual. I hope you consider giving a talk to a support group for siblings of a special needs child. It would be so helpful for you to validate their conflicted feelings and help them cope with these complex emotions. Bravo to you for writing this article to help educate people about this unique perspective, which gives you insight that few others would otherwise understand. You are obviously an incredible mom and an excellent writer. :)
Lelah March 02, 2012 at 03:47 PM
Having four boys, I'm always afraid of how the three feel about their special needs brother. The time and attention he requires. That sometimes one parent can't be there for their special events. It scares me. We try to give each child one-on-one time; time away from their siblings. Time when they don't have to consider special needs. But I'm still always afraid. Especially for my oldest who vividly remembers what life was like prior to a special needs child. I realize that this is our lives; it is the way it has to be. That we don't choose what we are given, we choose how we deal with it. It was somehow very reassuring to know that I'm not the only one out there. At least my second doesn't remember because they are so close in age, and my youngest just thinks the world of his big brother as any little brother does, despite the fact that he surpasses his brother in many ways. I'm blessed with my children. Not just to have them, but for the exceptional people they are. I just hope they always know how amazing they are, and how equally loved and cared for they are.
Lucy shell March 02, 2012 at 10:27 PM
Teary eyed right now! I struggle every day with this. Two kids, one(4) with a nurse daily and chronically Ill/fragile the other typical ( 5.5) Only 19 mos between them but more medical experiences then most have in a lifetime!
Amanda Pitman March 03, 2012 at 04:29 AM
Such an eye opener! I have a beautiful and very clever 2yo and and a beautiful 5mth old with brain damage. Its very easy to forget my 2yo's other needs. sometimes I'm too tired or busy to play and not even the heart to smile. I'm trying really hard to remember that she's important too by having a tea party with her or read her a story. Thank you for shearing your story. I promise I'll work just as hard for both my girls.
Melissa March 24, 2012 at 03:30 PM
Jenny- This is amazing what your 7 year old is doing for your youngest. I liked your facebook page. I have a special needs daughter & I have 2 other children. My middle child does not understand why his sister is the way she is. I want to show him your facebook page. Here is her site: http://www.freewebs.com/allaboutashleigh/ . Ashleigh has spastic parapareisis. Thanks for sharing.
Melissa March 24, 2012 at 03:39 PM
Love this article!! I now know why I do reading night with my 2 boys & a separate reading night with my oldest boy! You just reminded me of the reason why I need to keep do these special nights with my boys. I am also adding a reading night with my special needs daughter. This article has helped a lot of people. Thanks so much for sharing. Melissa http://www.freewebs.com/allaboutashleigh/
Marina Cracchiolo (Editor) March 26, 2012 at 05:55 PM
Hi everyone, thanks for reading Erin's blogs. She posts regularly once a week. Here's a link to this one! It's called STOP WORRYING! http://patch.com/B-FLD
Chris R Willis March 27, 2012 at 01:31 PM
As a father of two sons 7 and 6 with fragile x syndrome and a daughter whose fine at age 7. I can totally relate. One thing I did because Ashton is much like Molly, I've dedicated every Friday nite as date nite for Ashton and I. This nite n afternoon or entire day is hers. To do what she wants to do. She lives for it weekly. I don't use it as a bargaining tool. Its there good or bad. Now if she has had some challenges I will limit a few things like purchases. But we always go. She needs her attention when the boys get so much. I love her so much as well as my boys. They all have different challenges n needs n no one needs to be left out. Ty
Erin Ronayne Youngblood May 01, 2012 at 01:37 AM
Thank you to everyone who shared their own experiences and for the wonderful feedback-I truly am blessed with an incredible daughter who fights just as hard as I for her very "special" little brother. Thank you for reading!
Angela March 03, 2013 at 03:36 PM
This made me cry. My 8 year old daughter is so much like yours: kind, creative and amazing with her little sister with special needs. I feel constantly riddled with guilt that my "regular" children get less attention. Thank you for sharing your own experiences.
Marilyn J March 07, 2013 at 01:00 AM
Sorry for the loss of the children's father. I also raised my children without their father, he passed away when they were quite young. My compliments to your son, he sounds like a remarkable young man.


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