Siblings Have special Needs Too!

This is copied over directly from Big Sister’s Site – I felt it was important enough to cross-post the entire entry.

Big Sister, Aileen

Big Sister, Aileen



Aileen: “Mom, Why didn’t you tell me?”

Me: “Tell you what?”

Aileen: “Why didn’t you tell me that when you had Braxton, you wouldn’t spend any more time with me?”




Ugh. Talk about a punch to the gut. Or a slap to the face. Or anything else you can think of that’s incredibly painful. I’m already hard on myself as a mother, but when your almost 7 year old says this out of nowhere, you sink to an especially low place.

I don’t at all think that I’m a bad mom, nor do I think I’m perfect (obviously). I’m only human, and we all make mistakes.

This conversation happened last week, and up until then, everything had been going great.  We had been struggling with Aileen acting out because she felt left out of the picture with all of Braxton’s issues, so we truly made a concerted effort to REALLY involve her more.  I signed her up for T-Ball even though I had no idea how I would fit it in, and so far it was definitely a great decision.  I try really hard to give Aileen my complete, undivided attention when brother is sleeping.  I make a HUGE deal out of her accomplishments and all the things she gets to do that little brother doesn’t get to do.  And still, she hit me with this.

Really, what it comes down to, is Aileen is only 6 and doesn’t truly understand that I’m not “ignoring” her on purpose.  It’s also the “nature of the beast.” The feeling of being the forgotten child is almost inevitable when you have a “typical” child and a child with complex medical needs.   As parents, we fail to see that BOTH kids actually have special needs.  Braxton has all of his medical needs and Aileen has a need to feel important and special in any way possible.  It’s easy to become consumed in the constant string of appointments and therapies and phone calls to this doctor or that doctor and our poor “typical” kid is left to fend for themselves because we think “Oh, they can take care of their self, they don’t NEED me like my other kid does.” But, the fact of the matter is they do.

Siblings have an overwhelming need to feel appreciated and recognized.  It’s easy to get lost in the shuffle, so parents have to make a true effort to remind them, they too are special and wanted and loved.  Sure, it’s silly to say that, but to a 6 year old, they NEED to hear that. Even if you had 2 perfectly healthy kids, the older child still needs reinforcement that mommy and daddy don’t love her any less than they did when it was just her and no baby around.

This is all still new to me, and I’m learning everything as I go.  There is definitely no manual, but here are some of the things I’ve learned from Aileen about recognizing the special needs of siblings:

  • Dedicated time without siblings – it’s important to take time out of each day to sit with your child and give them your undivided attention.  Schedule 15 minutes a day (or longer if you can). Maybe right when they come home from school to talk about their day and just hang out. Maybe before bedtime to talk about the day and read an extra bedtime story. Make sure the other sibling is in bed or taking a nap so your sibling child has your full attention.
  • Mommy/Daddy Dates – Make a date with your child! Yes, a date! Arrange childcare for the other child and take your kiddo out somewhere special where it’s just you and them. The park, a picnic, a movie, out to eat – let them choose!
  • Extracurricular Activities – Sign your kid up for a sport, dance class, gymnastics, anything at all! I wasted too much time thinking well we don’t have time for ___ because Braxton has this or that. Or caught myself telling Aileen we couldn’t do something because of Braxton. Well, naturally there would be resentment there if it’s HIS fault she can’t do something.  I try really hard to avoid phrases like that now so she doesn’t resent him.
  • Involve them! – This one is easy to forget. Siblings usually take great pride in being “big helpers,” so let them! Ask your therapists to include them in a session or ask your therapist to teach your sibling a special exercise that he/she is responsible for making sure little brother/sister does everyday.
  • Praise, Praise, and More Praise – Always, always, always praise your child for doing something great. Whether it’s helping you out with their sibling or doing great in school.  Do not forget to celebrate their accomplishments too! We also make a big deal out of getting to go spend the weekend with grandma. Brother doesn’t always get to go because he has appts or needs special care, so it makes Aileen feel extra special when she gets to do something cool without her brother.
  • SibShops – This is one I’ve looked in to, but haven’t been able to do. SibShops are special workshops for siblings of children with special needs.  They allow kids to meet other siblings so they can share their feelings about special needs and anything else on their mind.  The workshops have lots of activities to help support siblings and foster relationships between one another. Most of the ones I’ve found say they start at age 8, so it may be a while before I get Aileen in on one, but I’m for sure going to do it.
  • Pen Pal – This is something I literally JUST signed up for.  A couple of teens who each have a sibling with Rubinstein-Taybi Syndrome (which is what Braxton has) have been Pen Pals for years and have become great friends. So much so, that the young man’s parents allowed him to fly down to Texas (from Massachusetts) to escort his pen pal to prom. How cool is that?! Well, they decided to take it upon themselves to create a system of assigning Pen Pals for siblings of kiddos with RTS. I asked Aileen if she would be interested and she was so excited, so I sent over her info.  She was matched up with a little girl in California, so we are now anxiously awaiting that first letter! I can’t wait to see how this turns out.
  • Cards for Siblings – Another thing I JUST signed up for! I found Alayah’s Cards 4 Siblings on facebook. A few moms got together after one of their daughter’s started feeling left out that her brother was constantly getting attention and receiving so many gifts.  Their goal is to send the siblings something to make them feel special too!  A card on their birthday, a letter every so often to remind them of what a great big sister/brother they are, just something simple.  And I know that that small gesture can go a long way.  Please visit their page and consider sending them donations of cards and other supplies!
I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

I constantly have a camera on Braxton, so every once in a while Aileen gets the spotlight too, and she totally hams it up

Trust me, I do NOT have this all figured out.  Even doing all of the above, I still hear the occasional “you  love baby brother more than me” and it stings a little bit more each and every time and sends me in to a ball of tears.  In the past few months, I’ve really put forth an extra effort to do all the things I know to do, and we have seen an improvement in Aileen’s behavior and attitude at home, which is fantastic! We still have some rough days, but I will keep learning from Aileen as we continue on this journey together.

If you have any genius ideas, I’d love to hear them! I’m willing to try anything! Share them with me in the comments.


Filed under Family, Kids and Family, Life, Special Needs Child

5 responses to “Siblings Have special Needs Too!

  1. Wow, I got hit in the gut right along with you. 😦 Love the idea of mom or dad dates!

  2. I’m guilty of this too… 😦

  3. Wow, thank you so much for this post! I saw it linked on the blog “Love that Max” and had to read it because I just posted about my daughter being the sibling of my son with special needs and how it can be hard on her. My daughter is also 6 years old and so I very much appreciate your Pen Pal idea as well as the Card for Siblings. I’m definitely going to have to seek out a pen pal for Kaylie. Thank you for this post!

    • You’re so welcome!! I know it can be rough on siblings and as parents we try everything we can. Always remember the little things matter most. And if you don’t find a pen pal within your diagnosis, I’m sure my daughter would love another! 🙂

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