Getting My Stars Back: The Special Needs Of The Sibling

At Kellen’s two-year well visit, we explained to his pediatrician that Kellen would become a big brother in the summer.  He congratulated us, asked a few questions about our planning since I was high risk and then broke into what you could tell is one of his frequently repeated speeches for parents about to have a second child.  It went something like this.

When they are about to have a second child, parents wonder how they are going to give equal time to both of your kids.  It all works out, you will see, but you probably won’t give 50% of your time to Kellen and 50% of your time to the baby.  Kellen is used to 100% and he’ll continue to demand 75% and the baby won’t know different and think 25% is just right.


In a way, that sounds kind of harsh and maybe the math isn’t exactly right, but it does make sense.  Baby’s and toddler’s needs differ greatly and toddlers are inherently squeaky wheels.  They find ways to make sure their needs are met.

However, when you’re the sibling to a child with special needs, that math can easily get flipped upside down.

When your brother has months and months of hospitalizations and then requires around the clock care when they are home.  When you have to celebrate your third birthday in the hospital because your brother was admitted that day.  When you, at such a young age, begin to realize that most babies drink from bottles and don’t need oxygen and that most of the other kids at school have no idea what the inside of the hospital looks like.  When you’re used to mom picking you up from school and today it’s dad, and you know that it means Owen is sick again.  When you can’t visit your brother for days because he’s in a part of the hospital that kids can’t visit and when your mom, the person who your world revolved around for your entire life is suddenly needing to stay at the hospital for weeks at a time, instead of being home with you. When you can read the fear and fatigue in your parents’ faces and decide to only do the naughty things at school…because that’s where you feel secure enough to do the naughty things.

It doesn’t really matter how resilient kids are, when your life for a full year (1/3 of your life) is the life described above.  That life takes a toll.

For Kellen, the toll didn’t start showing up until life finally started settling down.  Last summer we started to see changes in him that we thought were just “being three” and then the changes became more pronounced.  He had raging temper tantrums that would last 45 minutes or more and you never had an idea what little thing was going to set him off.  He started hitting, kicking and throwing things and would clear tables in fits of rage.  At school, the social boy who loved all his friends was suddenly withdrawing from the classroom and spending days sitting in the corner disinterestedly watching the friends play.  Other days he was so full of energy that his teachers couldn’t get him to focus on any tasks.  He began to have fears of things he’d always loved.  A fire truck would “woowee woowee” its way down the road and Kellen would burst into tears.  For hours after seeing an emergency vehicle he’d obsess about who they were going to help and if they were okay.  He also couldn’t stand being alone.  At four, he could not play by himself.  There was a constant, “Mom, look what I’m doing.”  “Mom, do you see the mud on my [toy] trucks tires?”  I know these things don’t sound bad, it is hard to explain, but there was constant neediness.  Never a moment of silence because he couldn’t stand silence and being in his own thoughts.  Of all the changes, the hardest one for me was Kellen no longer looked at me with stars in his eyes.  All I could see was anger from my former mama’s boy.

The behavior was exhausting and I had so many feelings of failing as a parent.  When I would express concerns to others all I heard was, “he’s a typical boy, going through a phase.  3 and 4-year-old boys are full of energy, it’s a hard age.”  Our friends reassured me but the reassurance never sat right.  I felt something was wrong, but I didn’t know what to do.  All I could try was to change my parenting because that’s how you change kids, right?  I clearly just wasn’t a good enough parent.

And then last fall, after particularly aggressive behavior towards one of his friends at school, his teacher gave us a referral to the center’s mental health team.  I’ve wanted to write this post for months, but that phrase is what was stopping me, “mental health” when talking about a 3, and now 4, year old….well that’s just not something we talk about in our society.  You know, because if a 4 year old is needing a therapist they must have really bad parents.  I knew Kyle was a good parent.  In my mind, that left me as the bad one.

My starting to see a therapist had nothing to do with Owen.  I started going to a therapist because I wanted help to become a better mom to Kellen.  I wanted my little boy to have stars in his eyes when he looked at me again.  I didn’t want to be in constant fear of the next meltdown every time we were together.

At the same time I started my therapy, Kellen began play therapy with a social worker at his school.  She helped me understand that his constant need for feedback and his new-found fears were signs of anxiety.  As she described it, the first step was to get Kellen comfortable with what happened and how it made him feel.  After that, we can start working towards giving him words and the ability to communicate what he’s feeling.

It’s been about five months that he’s been in therapy.  In some ways things got worse before they got better…but we are starting to see improvements.  Kellen still struggles to play by himself and his teacher still has to give him reminders to “focus”, maybe more often than what she sees with the other 4-year-old boys in the class.  However, the rage seems to be dissipating and recently, I’ve started noticing stars in his eyes when he looks at me.  Since he was born, stars have always been my symbol for Kellen.  I love seeing them shine from him again.Slowly, I’ve come to understand that Kellen’s behavior was not me being a bad parent.  It’s uncomfortable to talk about the mental health of children, especially small children.  However, if Owen has 4 therapy appointments a week to help him overcome the injuries of  his traumatic birth, it is reasonable that Kellen might benefit from weekly therapy to overcome the wounds of watching his brother’s traumatic birth.

siblings of special needs children

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

17 thoughts on “Getting My Stars Back: The Special Needs Of The Sibling

  1. Thanks for your braveness to share this. Not that I think it’s anything to be hidden, but like you said, our society automatically assumes things that it shouldn’t assume, making it uncomfortable to share. When you talked about the firetruck going from a favorite thing to a feared thing, it stands as an example that siblings can have NICU/preemie PTSD too. I hope things continue to improve for everyone!

  2. I clearly remember standing in nursery 7 and discussing our “Well, today at rounds they said” comments and noticing your necklaces. Great post, you are a rock star mom!

  3. My daughter was a month shy of 5 when I had her brother. The first year after he was born, she put up a good front. But when the her walls started to crack it was clear that she was more traumatized than we realized. We have no had her in counseling for over a year to help her work through all of her anxiety issues and it is, without question, the best thing I could have done for her. My girl is an amazing kid… but even the amazing need help. Good on you for getting your son help – and for sharing your story. I know you are not the only one going through this – and the more of us that talk about it, the more mainstream it will become.

    • Thank you for sharing, Jessi. I look forward to meeting more parents who have older siblings to their preemies.

  4. You continue to warm my heart, Tatum . . . I am so glad you are Kellen’s mom! You give all you have all the time . . .

    • Thank you, Heather. I definitely agree…it’s just one more reason this preemie stuff isn’t just something to “get over”.

  5. Friend,
    Brave brave words and I know exactly what you mean about not sharing – especially when it comes to mental health in young children and tantrums/rage. I have a draft post that I’ve edited 100 times and still hate that has to do with Tucker recently losing the few words he has when he perceives a threat to his little circle of control. It’s horrible and I don’t want to post it because I don’t want the media’s portrayal of autism to have anything to do with Tucker biting and shoving and hitting when somebody wanders into his organized area (or whatever).
    I am so glad that you are getting help for Kellen – I know that toddlers get jealous of baby’s attention from mom and when special needs play a part and bring that attention to an entirely new level, life is skewed. For everybody.
    Please know that although we have not met, I promise you’re a good mom to both of your boys. If you weren’t, you’d never have given any of this a second thought much less shared it with the rest of us. You are an inspiration and I am SO SO glad we found one another on this huge internet thing. Hugs.

    • Thank you, Kristi for your kind words and continued support. I hope one day you’ll find the right way to share your experience that doesn’t feel like it’s feeding the media frenzy. For me, it took journal writing versus post writing. I had to do it for me first and then with time, found the way to bring it more public. I, too, am glad we’ve met and look forward to continue learning from the similarities and differences in our boys.

  6. I rarely cry when reading blog posts, although I am often moved. But I am crying for what Kellen has gone through, what you as a family are going through and I am crying in solidarity with you.

    Uncannily, I have wanted to write a post about Mr Boo’s sister for a couple of weeks but haven’t yet been able to do so. I hope to next week. She is 5 and she is marvellous with her little brother. She loves him more than anything in the world and is so accepting. She thinks all babies have physio and anti-seizure meds, that she must have been in the hopsital for months when she was born. He smiles at her like he smiles at no one else.

    But, I know also she is being adversely affected by all this. We had to go into hospital for emergency tests for Mr Boo at the weekend (non-blanching rash, what fun, and her Dad was away with work) and she was fine at the time, except telling the doctor not to hurt her brother while take bloods. Since then she has been up many times in the night, started bedwetting, being extremely aggressive and bit her Dad in the street yesterday for trying to take her hand to cross a road. She is not like this. It isn’t her. Yes she’s five, but this isn’t my daughter.

    I know I am messing up. I want her to be OK and she mostly is and I am quite convinced that she will grow up even more compassionate and strong as Mr Boo’s sister than she would if he wasn’t in our lives. But she is 5. She needs time to be 5. She needs to live in a 5-year-old’s world. I think she might need help too. I will get it for her. But it makes me so sad.

    Thank you for sharing. A great post. As always.

  7. When we had our twin girls at 24w4d, I had already been on bedrest for 10 weeks and in the hospital for 10 days. We had a 13 year old, a 5 year old and a 3 year old as well. It’s hard to fully consider the impact the pregnancy and their birth had on my older children. But there was no way around it and young children do adjust remarkably to whatever needs to be without realizing their normal is different than somebody else’s normal. One day after the babies had been home for months, my mom was over for a visit. My 4 year old daughter said to her something along the lines of, “I sure hope they make it.” My heart broke a little right then realizing she had been carrying that burden in her little heart worrying for her siblings when they were well out of danger from their early birth. I felt like we were past the trauma of constant worry, but she didn’t know it was over. And then one time when I told my 5 year old son that most babies come home with their moms from the hospital, he was very surprised. I feel bad sometimes for giving them the idea that pregnancy is an illness because I spent so long on bedrest before delivery. What surprised me most was that our teenager had the hardest time dealing with it, but maybe that is because she was old enough to know it wasn’t normal and realize the impact these delicate babies had on her life.

    • Thank you for sharing how each child coped differently. Such great examples for all of us to reference. Siblings are definitely super heroes too.

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