Unseen Kids; The Silent Drowning of Siblings of Special Needs Kids

Melody Aguayo • December 19, 2024

They say that drowning is a silent death which is what makes it so dangerous. Muffled voices underwater, limbs flailing where no one can see them, and then under they go. I have worked with many siblings of special needs kids. They tell the same story.


“I feel invisible.”


“I don’t even feel like a real kid.”


“My brother/sister always comes first.”


“It is my job to get everything right because my sibling isn’t capable of getting things right.”


“No one sees how I hurt, or how scared I am.”


“My mom/dad has no time for me.”


As a parent of a special needs child, I get it. It is like your family is in a boat, and it tips over. Your first thought is to rescue your kids. Only one of them can’t swim. You hear his screams, and you swim toward him. You know your other child is fine because she is a strong swimmer. Time passes, and you still haven’t managed to get your child to safety. Your strong swimmer starts to weaken. A person can only tread water for so long. Still, you don’t hear her cry out, and your hands are full with your special needs child. Everyone in the water is doing the best they can, really. Still, the unseen child has to be rescued, guided, or accompanied to the shore before she drowns.

Here are some helpful tips that we have learned:

1. Alternate sleep and wake times.

My higher needs child goes to bed first, and I wake him up later.  In this way, I have time every day to connect with my daughter. Sometimes we play games, lay in bed and talk, or watch her favorite show together.  If you were to quantify the time I spend attending to each child, it would still be far from fair, but she has uninterrupted time almost every day with one of us.


2. Make the time you do have count.

If your “unseen” child has a doctor or dentist appointment, keep her/him out of school, or at least take her to lunch.  If you are taking a work trip, take that child with you.  Even if you are just running an errand, include her and stop for a milkshake.


3, Check- In frequently.

Think about how difficult your special needs child is for you, the pressure you feel, your inability to rest, the fears you have for his/her future.  Your “unseen” child feels all of this, but he/she is so much more vulnerable than you are.  She needs to be able to talk about her own very real grief and fears concerning her sibling.  She needs to voice the injustice, her anger, her sadness, and her jealousy of other people’s families who are not like hers.  The grief is hers also.  I have found that if you join a child well in his/her distress about a special needs sibling, she begins to be able to express compassion and grace toward her sibling.  If you can’t join her well in her distress and don’t check in with her frequently, anger and resentment grow.


4. Don’t obsess about fairness.

I heard the phrase “treating unequal’s equally is not fair”.  This is very true.  If you have one bag of M& M’s in your purse, and you know one of your kids ate a huge breakfast and the other hasn’t eaten all day, is it fair to split the M&Ms in half?  Life isn’t fair.  One child may get more of your time, but the other child probably has more privileges.


We have to reach for these kids and hear them before their heads go under the water. We have to hear their muffled voices before their faces go under water. We have to see the strain in their muscles before they fatigue and go under. Their lives depend on it. A child can only tread water so long alone. They need our presence. They need our attunement. They need to know that even though their needs will never be as big, they are equally important. They need to know that even though time is not allocated fully, we see the hours stolen from them. They need to have a voice and a parent willing to sit with the discomfort that we can’t fix everything for our kids.

Trauma, Boundaries, and the Battle for Safety

By Melody Aguayo • March 28, 2025
To Set Appropriate Boundaries, You Must Have an Experience of Safety Children who have experienced developmental trauma (in the womb or in early childhood) have an over-active arousal system. This means that even if they are safe, they don’t feel safe. This lack of understanding what “safe” feels like creates lots of boundary issues as they get older. The Under-Boundaried Kid “I feel like I can’t let my kid out of my sight.” “My kid would follow someone off a cliff.” “My kids would try any substance that was given to them. They literally have no sense of independence or safety.” These are the types of phrases I hear from parents with under-boundaried kids. These kids do generally well in the right environment, but if there are rotten apples in the bunch, they join them quickly in whatever activity they are engaging in. They may stay out of trouble until they get a phone, and then they begin to unravel at that point. The Over-Boundaried Kid “My child is always ready to fight.” “Honestly, I hate to ask anything of her. I would rather do it myself than deal with her attitude for every small request.” “My kiddo bosses everyone around. I am shocked he still has any friends.” “She doesn’t care if she breaks our rules or makes us upset.” “He just does whatever he wants.” These are some phrases I hear from parents of over-boundaried kids. These kiddos often avoid safety and seek danger out. Safety feels unfamiliar to them. Safety feels boring and eerily peaceful. Yes, kids can also move back and forth between being over-boundaried and under- boundaried as well, which is extra complicated.

Trapped in Toxicity: Protecting Children from Harmful Environments

By Melody Aguayo • March 21, 2025
Be a Good Parent-Detective No child will come to you and say, “I have been placed in a toxic environment where my growth is limited, and my feelings of safety are compromised.” They don’t have the ability to keep themselves safe. I’m always very irritated when I hear of Bully campaigns that put the responsibility on the victim for seeking help and telling adults. In an ideal world that would happen, but that is just not possible for most victimized children. It is the adults’ job to structure the environment for safety, not the kids’ job to keep themselves safe. You just have to learn to recognize the signs, and if you are confused, then go to the child’s suspected toxic environment and gather information. Volunteer in their school or Sunday School class and observe how your child is functioning in those settings. Don’t listen to other adults more than you listen to your child’s behaviors. No one will pay attention to your child the way you do. I have had so many parents say different versions of these statements to me over the years: “The teacher said he was well liked, but when I observed him in his classroom, I could tell he irritated everyone.” “The school counselor says he is doing fine, but anytime I show up at a classroom party, he is hiding from the other kids.” “The soccer coach doesn’t see any issues at all, but when I pick him up from soccer, he is so dysregulated that it takes me all evening to settle him down.” I understand there are times you can’t take a child out of a toxic environment. Let’s say the neighborhood kids are all mean to your kid, and moving is just not a financial option for your family. In these situations, we can do our best to build a hedge of protection around our kids with more structure. You can tell your child that they are not allowed to play with the neighborhood kids, and instead you can figure out a couple of play dates a week with someone who is kind to them. This will be more time and trouble for you, but this teaches your child that we say “no” to toxic environments and nurture safe ones.

How to get free childcare in the summer?

By Melody Aguayo • March 7, 2025
Sign up for every VBS within a 20-minute drive from your home. If you plan it out well and start early, you can end up with 6 or 7 weeks of free childcare. Plus, you have the added benefit of having your kids scream, “Hey, that’s our church!” every time you drive past any chapel in any direction. Do not hold me accountable for the annoying songs your children will sing loudly ALL YEAR LONG even if your eyes start twitching. And you know how you “lose” things you no longer want your kids to play with, watch, or listen to? Well, you can only “lose” two of the song CDs before your kids catch on.

If Adopted Infants Had ACE Scores

By Melody Aguayo • February 21, 2025
I find it interesting that we consider infants to have “risk factors”, but there is no ACE (Adverse Childhood Experiences) score for a newborn. Why is it that infants have “risk factors”, but then as soon as they are born healthy with an Apgar score above 8, everyone breathes a sigh of relief?

The Differences in Sexual Development in Children with Complex Trauma

By Melody Aguayo • February 14, 2025
Sometimes I think organizations hire me just to talk about things like “masturbation”. When is the last time a parent posted on Facebook about their kindergartner, “Noel just showed the neighbor her vagina and asked to see his penis!” Or how about, “I caught Miles looking at pornography for the third time!” Both of these things are about as common as someone winning the cross country meet, but they aren’t discussed. Parents are discreet about sex, and by the time most kids go through puberty, the kids understand this discretion. However, this isn’t true of all kids.

When Meeting Kids’ Needs Is No Longer Fun

By Melody Aguayo • February 7, 2025
“You have never had to do anything this hard in your life,” our teen son said to us after being given the job of raking and moving an enormous pile of leaves to the front yard. We burst into laughter. He felt so persecuted, when in reality he could move those leaves a thousand times, and it wouldn’t come close to the amount of time, energy, agony, stress, effort, and money that we have put into raising him. Kids are naturally self-centered. Even the most responsible, hard- working, compassionate kids are naturally self-serving.

When Parents Lose Their Minds over “Flip Sequin” Shirts

By Melody Aguayo • January 30, 2025
There is a new fad called “brush changing sequins”. You can find these appealing, brushing sequins on everything from key chains to bedspreads. I had a little girl come into my office with a flip sequin t-shirt on the other day. It was dark blue with a large, glittery silver heart on the front. I am thirty-seven, almost thirty-eight years old, and let me tell you that I had to restrain myself from reaching out and brushing the sequins up and down on her shirt.

Window of Tolerance

By Melody Aguayo • January 23, 2025
"We all have a window of tolerance. When we are operating outside of that window, we behave badly. This window is widening or shrinking, depending on what happens during the day. When we sleep well, eat well, and get the physical movement that we need, our window is larger. Every choice we make during the day either enlarges the window or shrinks it. Every trauma that a person endures shrinks that window of tolerance.

Life on a Raft; Isolation in Families with Special Needs

By Melody Aguayo • January 16, 2025
We still live on the raft, but we visit the island frequently now.  At some point along the way, we got used to the sweetness of the raft – the way it doesn’t matter what you have there or who you are – the way you focus on all the treasures you have, and they seem so many while you are on the raft – the closeness of the people on the raft and those sweet friends that join us here on occasion.
surviving middle school

Surviving Middle School

By Melody Aguayo • January 9, 2025
Let’s face it. Middle school sucks. There is this food chain in middle school, and everyone is in survival mode trying to stay off the bottom of the food chain at any cost. Kids do things in middle school that they wouldn’t do at any other age. They are all pretty terrified of social rejection, and regardless of their popularity status, they all feel rejected at times.
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