Living with an Extra Chromosome (Dup15q)

I really loved how open the parents are about their PTSD & what they go through. It needs to be discussed more.

I appreciate their honestly about their chronic stress/PTSD regarding Aiden's aggressive meltdowns. It's important to be transparent about both the joyful, sunny parts parenting a child with special needs, but also about they more difficult/draining parts. All of those experiences are real and valid.

I love how physically involved the father is with the wrestling and playfulness. You see how much love he has. Beautiful family despite difficulties and all.

Aidens parents..I do hope they have time for themselves . As aiden grows, it’s a bit frightening I imagine when he becomes aggressive. What strong dedicated patience loving parents…

This couple deserves respite care. They should be able to see friends or go to gatherings together without Aidan. Aidan also deserves the dignity of being trained not to assault his parents. He will get bigger and his parents will get older and weaker-one day they will not be around. The time will inevitably come when any periods of violence toward caregivers can’t or won’t be tolerated. There has to be some form of behavioral therapy that can assist with this.

That is one heck of a ceiling anchor, sir. Well done. Both parents are doing an amazing job

Thanks for interviewing this family! We also have a child with Dup15q. Her name is Erin and she is 11. We're also part of the Dup15q Alliance "family".

when i saw that room they had for him and how he was able to go downstairs and interact with it entirely on his own accord and his parents could watch him while maintaining space, i was just so moved. because sometimes being disabled means you can’t be alone, but all humans need to have space once in a while. so i love how they had the access and innovation to allow him freedom and space and autonomy while still keeping an eye on him.

It must be exhausting for Aidan and his parents living in a constant state of arousal. His parents have a great outlook on life.

Just watching Aiden in this video exhausted me. I can't imagine what the poor parents feel like!

Chris, to give these kind people exposure allows us all to grow as people. You are truly an angel.

My son has a different diagnosis but we deal with alot of the same issues. Weve gone through his teens and he is now in his 20s. Thank you for sharing your story. Its comforting to know that we are not the only parents going through these situations.

This is heartbreaking. I am exhausted and sad for these parents. The fact that they have given up seemingly everything in life, including conversations with each other, to keep him from freaking out is just so sad. This isn’t sustainable. I hope they can find a long term solution so that he doesn’t end up killing them.

Wow --- oftentimes I watch these SBSK videos and think how the families have to make concessions and learn how to accommodate ... but this one is really rough. Aidan is so physical and the parents have to really deal with a lot of intense physicality. It must be exhausting both physically and mentally. Hats off to them, but I do wish they had more help in the home and had some respite. I imagine at school he has dedicated 1:1 aides. The physical attacks are awful and Aidan just keeps getting stronger. He has a lot of "young man strength" with no way really of regulating it. They are going to have to seek assistance - especially as they get older. This video is interesting because unlike virtually all of Chris's other videos, he talks mostly to the family and not to the person the video is about. Of course it appears Aiden is hard to establish connection with, so it would probably take more than one visit for Chris to have any kind of rapport. Was it difficult, Chris, to try and conduct the interview without being able to talk directly to Aiden much?

Seizures are not something to ever dismiss. My oldest son lost one of his best friends in high school. The families were all broken because he was an amazing young man.

There likely will come a day when they can't handle him unless he's medicated, sadly. Aidan is very lucky to have loving parents.

Aiden was definitely born to the right parents. They have so much patience and love 🙏🙏🙏🥰🥰🥰

I take my hat off to both these parents! I think I couldn't take the intensity and would worry about Aidan's future. Glad to hear Aidan goes to school and gives his parents a break. I suppose one of the parents works outside the home. So sorry Aidan and his parents are so cut off from social interaction. Their intense bond is very special, very admirable.

Ok so my almost 6 year old has dup15q (well, he has a tetrasomy of ch15q11.2-13.1) and congenital fibre type disproportion. Watching Aiden in this video is a lot like what I imagine our future. Ezra is less coordinated than your typical duper because he has almost none of the fibres in his muscles responsible for fast explosive movement. He’s still ridiculously strong and after reeeaally struggling with mobility, once he took off 😅 we call him Ezra Knievel for a reason 😂 I showed this video to Ezra’s older sister and she was like “oh that’s an Ezra move.” Lol we both got teary eyed when we saw Aiden choose the turkey for Old Macdonald ❤ this is not something Ezra is capable of yet and he’s suuuuuch a music lover (Little Baby Bum is his jam) As for the violence, I whole heartedly send you all love and peace and strength. Ezra has no teeth on top yet but his go-to move in frustration is to bite his hand and he actually has like a callous on his right hand from it :( bracelets and chewies try their best to distract but he’ll take the chewie out of his mouth to bite me in moments of terror or anxiety or impatience or whenever there’s too much talky talk in the room and we’re muffling his LBBs. We got him earmuffs but of course if it’s going to help, he’s going to yeet it 🙄😂 just like them 350$ glasses for his -4.0 pretty freaking nearsighted little self that he once tolerated for a whole minute. Btw for the crowds: “training” him out of biting us is what lead him to discover he could bite himself and tbh, I’d rather go back to him biting me because I could dodge him and he does not dodge himself. Also also, these parents don’t need to be told they’re doing things wrong or not allowing their son to have “dignity”. Chances are, they’ve tried it all. Dupers are not your typical ASD children. There is so much going on in their little brains and bodies, like beyond the usual sensory stuff they also deal with a ton of physical issues as well. There’s a bunch of stuff that can go wrong with the house if the foundation has a big pile of extra cement in the middle. They’re trying their hardest to enjoy their life with their son before they can no longer handle him and yes, they also have thought of that since the moment he was diagnosed. And then they’ll worry for the rest of their lives about everything, if he’s happy, if he’s well taken care of, if he even realizes we’re not there anymore…trust me, there are no stones unturned in the minds of parents of babies who will always be babies.

This is so lovely. I’m an autistic adult (with adhd and ptsd and other stuff too). Understanding that a meltdown isn’t personal, that it is a thing we cannot control and that we often feel bad afterwards for any harm caused… Having a home set up for him to have as much freedom as possible, and space to control his sensory needs independently. I just love this. Thanks for being awesome parents. If everyone had parents as loving and caring as you, the world would be an amazing utopia! ❤