Living with an Extra Chromosome (Dup15q)
ฝัง
- เผยแพร่เมื่อ 20 ก.ย. 2023
- Aidan is a nonspeaking teenager with an extra chromosome, a condition known as Dup15q. He loves wrestling with his dad and singing "Old MacDonald" with his mom, while using an iPad to choose which farm animal they sing about. Aidan's parents want others to know that he is the most lovable person they have ever met.
Learn more about Dup15q at dup15q.org/
Support SBSK at / sbsk
I really loved how open the parents are about their PTSD & what they go through. It needs to be discussed more.
They need respite. Aiden needs a degree of guidance they are unwilling or unable to provide.
@@jacobus57 yeah, like even if they can handle it for now, as they said they're on the older side for parents and will eventually need help regardless.
@@waffles3629this is the ultimate fear of all of us with special needs children, what happens after we're gone?
I adopted my special needs foster daughter when she was five and I was forty. My daughter's issues are much different from Aiden's, but I can tell you from experience, I have been very traumatized over the years.
What was in your mind to adopt such a special needs child? What benefited you?@@darleneengebretsen1468
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.
Yes , and it’s EXTREMELY respectable how upon having Aiden, they decided that it would be unfair to have any more children. The honesty and selflessness it takes to make that decision is admirable. most parents would just keep popping out babies, just because they want the “family” look . But these people actually took the time to consider what kind of future their next child would have given the circumstances. ❤️
@@sarahko1014 A lot of parents would have more kids to have the "normal" parenting experience you get with a typical child, and also to have help with their special needs child. While it's understandable to feel sad about missing out on the typical things like prom, school plays, driver's license, preparing for college, etc, it's not okay to have another child with the expectation that that child will someday take over caregiver responsibilities. I unfortunately see that a lot.
Pretty sure you can only get PTSD in a life/death situation.
@@1298blaster definitely not true at all - PTSD can develop from all kinds of traumatic events that a person may experience themselves or witness. Not just life or death situations.
@@luludust how does having
a child throwing temper tantrums cause ptsd? (Not trying to be mean I just don’t know how else to phrase my question)
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.
As he gets stronger . They get weaker.
@@deniseeugene1852just like all other fathers and sons, mothers and daughters. It may seem more pronounced, but I would disagree. He is keeping them young and fit. Most men of dad's age aren't getting down on the ground wrestling every day with a growing young man, let alone can they. And that is why. An object in motion stays in motion. Within limits, or course.
@@youcantdiealonewithcats I am 67. My son is 33 and autistic. My ex-husband remarried and has an autistic son with his second wife. My ex is on dialysis and cannot help much. I retired, and I can spend more time with my son. He is stable and attends a Day Habilitation program, which includes work sites for vocational education socialization and improving ADL skills. My constant worry is what will happen when I am no longer capable of caring for him. He has a residential placement whenever we are ready. I don’t l know if I ever will. But I am determined to fulfill his life with love until I can’t. I have support as my son can attend restaurants trips to the mall supermarket barbershop and to visit others socially. I use to do some of the same techniques for church . I learned that the more social
Settings he attended the better he behaved . It’s so important to have consistency . So the expectations at home were the same ones in social settings . The cry alone . They cry together . It’s a mourning process every special needs parent must endure to care for their child .
He's got his entire 20s to be at full strength. I don't see how dad(170 lb) can keep up in 10 years. Dad isn't actively going to the gym to gain strength...😔 Age hampers everyone.
Sure very cute now but what happens as he matures and they grow older and exhausted? Who is going to step in and assume the burden of this out of control child? It appears that he has learned how to control the parents to meet his every whim. And why did the parents not obtain premarital genetic counseling? How unfair to bring such an injured child into the world where his life will always be miserable and unsettled. When the parents are gone he will become society's burden. How destructive will he become when he is a grown man?
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…
Muy duro
El amor de padres los sostiene
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.
and its a space that is so uniquely tailored to his needs! a space like that is good for positive self-regulation.
Excellent point
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.
Thank you. I appreciate your use of the word "dignity." Right now, Aiden is not being guided by that principle.
They are doing what they can. There are no easy fixes for the parents. They probably do have respite care, but they only get so many hours of that a month. All your points are good, just not realistic in the situation.
Yeah, he isn't attacking his parents to hurt them, but that doesn't mean he can't learn.
I was thinking the exact same thing.
This is the most truthful and cogent response here. Mom’s eyes look like she’s tortured and tired and deserves a respite. I raised a brain injured son, not to that degree but I was overwhelmed all of the time I feel like this family needs an intervention and Aiden needs more discipline; gentle, kind, appropriate and repetitive discipline. Violence has no place in any family.
That is one heck of a ceiling anchor, sir. Well done.
Both parents are doing an amazing job
I was thinking that exact same thing!
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".
❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
What are your long term care plans for her? No one really talks about that, I’m very curious
@@Nat-of3ilplease don’t ask people this.
@@daisysummer514 my bad for what?? Being concerned about the long term care of someone who is not capable of caring for themselves? In what world does “don’t ask this” make it okay to not ask about the quality of care and life of a person? Is it something you don’t plan for or think about?
It must be exhausting for Aidan and his parents living in a constant state of arousal. His parents have a great outlook on life.
🤨📸
negawattt
What
Arousal not a word that many understand to have different meanings, but yeah
Aroused?
Chris, to give these kind people exposure allows us all to grow as people. You are truly an angel.
А что за диагность у него ?
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.
Bless you for what you do for family, and for being such a well-spoken and insightful advocate for your son and dup15q kids in general. Best wishes for you and your son. xx
These parents are rocks stars. Most people have no idea how incredibly difficult their life is.
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?
I love Chris's videos and these three are adorable.
It was the first video I had a feeling of "something is going wrong there". I can't put it in words. Maybe the self-abandonment of the lovley parents? It was hard to hear that they mostly communicate non-verbal.
I hope, they enjoy their life with the different lifestyle. I really do.
I’m not a parent but I honestly can’t imagine what all they sacrifice. I get overwhelmed as it is if I don’t get enough physical but mainly mental space from people and things. They probably only rest when they’re sleeping and maybe not even then.
I thought the same thing! Like, wow, this is the first time I haven't seen Chris on camera at any point! I'd suspect for safety of everyone involved.
@@karinliebtschokolade8157I had the exact same feeling about this video! Maybe the family was just more sincere and open about harder parts of their life and most others weren't, it's hard to tell. Either way I hope Aidan's parents get lots of rest and lots and lots of time for themselves.
Respite care is so critical for all of them. ❤
Just watching Aiden in this video exhausted me. I can't imagine what the poor parents feel like!
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.
That's what I was thinking too. The mom already can't handle him anymore and once the dad gets to an age where he's naturally losing a bit of strength Aiden will be at his physical peak in his 20s.
God's looking out for him.
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.
This is exactly how I feel. This entire video made me very uncomfortable
Agreed. Absolutely no way I could or would tolerate this without some kind of behavioral intervention
You're absolutely right. There may come a time when he has to be institutionalized for everyone's safety. Yes, they love their son, but they have no hope of anything approaching a normal life unless the boy goes into special care, or they get some massive amount of respite care.
@darleneengebretsen1468 I'm a nurse and I don't usually say "let's put this person on meds" however in this case maybe some medication would help? Something...?
Or medication@@darleneengebretsen1468
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.
This is a very closed minded view. All children are intense and people should see that people aren't all the same. The parents are great when they support and understand their children, neurodivergent or not.
@@riss.h2478no, I don’t think their view is closed minded as you put it…
Yours is negative and Elisabeth isn’t being “closed-minded” either. It’s a very honest “view” and I appreciate that.
@@Nan-1017 all children are a challenge, just because this child can't help it dosent mean their a problem.
@@riss.h2478wow. Not closed minded at all. It's realistic. Situations such as this are unsustainable prisons.
@@riss.h2478all children are not intense. And obviously being regularly physically attacked by a grown person is more challenging than having most neurotypical 17 year olds. Parents who don’t have neurodivergent children have a completely different experience.
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.
I’m missing half of a chromosome (p9 deletion), but it doesn’t affect me. It’s so cool to learn about people with similar things to me :)
Really? Wow…that’s incredible. I love genetics 🧬 so much! I miss studying it. Definitely wasn’t the easiest subject but it’s so fascinating that it makes you “want” to learn and to learn as much as possible. Thanks for sharing that!! 🙌🏼❤️🙌🏼
@@mslea13Of course! This channel is amazing at showing us all kinds of different genes and it makes me feel less alone when my genes were made a little differently! It’s so fascinating to see how p9 deletion syndrome affects others and how it hardly affected me at all! (except maybe contributed to my ADHD)
@@js8303 I couldn’t agree more!!! I absolutely adore this channel for those same reasons. There are certain kiddos and episodes that have etched themselves into my brain permanently…and I’m 💯 a better and happier person for it! It makes me happy you find the same passion for it. 😍❤️😍
You’re very lucky. You sound like it doesn’t bother you!! Good for you. I’m very happy for you 💕💚🐈⬛🦩
@@fuzzball4258Thank you! I feel very lucky to have not been affected by this chromosome, even if it’s only half! 😁
Aiden was definitely born to the right parents. They have so much patience and love 🙏🙏🙏🥰🥰🥰
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.
Dupers have a 1 in 2 chance of developing epilepsy. When we are lucky enough to make it past infant hood without infantile spasms, we still expect the first one any day. It’s not dismissed but just not surprising 😢
@@josiesonnovacationfaraway you misunderstand I just want everyone to know that a seizure is serious and should always be a huge concern
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! ❤
Is every minor trauma considered PTSD nowadays or has everyone gotten mentally weak
Wow he is so blessed to have such amazing parents! I grew up dirt poor and this level of care requires not only the planning to figure out how to accommodate but would also take alot of funding! I have a friend who's son has really bad meltdowns and tantrums and he's almost 13 and is getting bigger and more physically aggressive and she is planning on putting him in a home because she just can't do it anymore as a single parent which I don't blame her. These types of situations are so delicate people/kids with this behavior takes insane amount of patience. So much kudos to these parents. I wish I had such caring parents lol
Words cannot express the admiration and understanding I have for Aidens parents. What a lovely beautiful and compassionate family.
seriously....angels on earth
I am so impressed how much the parents adapted and try to imitate noises, wrestle, and stimulate his senses instead of making him adjust to their way of living/communicating. Amazing, selfless parents.
All the time playing and wrestling for the dad is going to keep him in shape, what a loving family.
Until one day when someone, likely the father, is injured.
@@jacobus57always searching that one moment to throw negativity to a comment
@@TheDarkestSecretsthe truth isn’t normally positive tbf
Not realistic
I used to work in a residential setting with autistic teenagers. We liked to take them into the community, bowling, shopping, movies etc. but sometimes someone would need to be restrained so that they didn’t hurt themselves or other people. I’ve had people call the police called on me a few times because they didn’t know if I was trying to hurt the client or if they were trying to hurt me. It was a hard job but the clients deserved to have the same opportunities that other teenagers have. All of the people who worked with these kids were trained on how to restrain without hurting them but it didn’t look very good to the people out in the community who didn’t know what was going on.
I had a job same as yours and we were trained how to restrain properly without hurting anyone. Only had to do it a few times, but I really hated it. I knew it was to not only protect myself but the others around , but wish it didn’t need to be done.
@@Pinkkermit17 not an easy job.
I also worked in residential group homes. One time we had to pull the van over and take a resident out and do restraints on the side of the road. The police stopped and when they approached the restrained resident looked up and with a big, cherry, innocent smile said, " Hi officer! How are you?" What memories.
@@stompthedragon4010 that is funny !
@@Allioops810 yes, it actually was. However, this client was very problematic and causing constant havoc, and we had to protect other residents from her. She had a history of always having a preferred staff person and would be very jealous of them, not wanting them to interact with the other residents. Of course that was impossible., especially if only one person was on.
I love that they've taken the time to understand their son. Such an amazing thing to watch!
They are lovely parents who obviously adore Aiden tremendously! I'm sure it's difficult to handle him as he gets older and bigger, but it's great to see how much love and strength they have with their son. I hope they get some kind of respite care so they can just be together and have dinner out or just have "them" time. It took me a minute to understand when they say "elope," it means he's a runner. When my son was young, he was a runner, and quite fast, too lol What a beautiful family ❤
"Elopement" is often a term used in law enforcement or, when I worked in the mental hospital, we called it UA (unauthorized leave) or elopement. In fact in written charts the term "elope/elopement" was the appropriate terminology.
They are also deeply traumatized.
@@jacobus57Do you have anything positive to say? As I've been reading through comments, all you've offered is doom and gloom. If you know of something they can legitimately do to help their situation, please expound on it. In the meantime, they're doing the best they can. It's not easy having special needs teens and all of us parents have our reasons for what we do and don't do for our different situations. It's amazing how many people "know"what you should do, but how few people actually help.
@@jeric0777honestly, no, I don't. This situation is an accident waiting to happen. Aiden is violent. His mother is unable to control him and that time will soon come for his father. Aiden can't tolerate "conversation," in other words human interaction. He's a man, not a puppy. He's a danger to himself, his traumatized parents, and society.
I'm not the only person commenting who finds this situation deeply troubling.
Take off your rose colored glasses and look at the bigger picture, the trauma, the danger, the unhealthy isolation, and eventually the societal cost. The best outcome is avoidance of tragedy, but that's a pretty darn low bar.
Ok so what do you think we can do with our kids? Take ‘‘em out back? You said it yourself he’s a man not a puppy. Behaviour therapy costs money. Everything costs money or time and you have to trade one for the other and take the bits and pieces of respite care you can get even though they call cps every time your highly clumsy kid has a new bruise but they don’t want you confining them either so you take time off from whatever crummy job you can now have because these babes can get sick like mofos so you’re not exactly employee of the month anywhere, to go to the hospital for an exam by special docs who tell cps that he is fine and that none of his bruises are sus, which we knew.
You wanna hear more stories? And I’m in Canada with all the universal health care. I cannot imagine how my US friends do it 😢
He is such a beautiful boy. Amazing parents. I am thankful my autistic daughter is only 4’10” and physically we can usually handle her meltdowns.
How old is your daughter?
Hey, I’m also 4 “10” and autistic! Cool
You can just feel the love all around, that’s such a great environment to live in. Not just for Aiden but parents as well!
My adult son will never leave home and yes, I have grieved for all the 'mom stuff' I've missed but I would miss him so much more.
Aiden is 17 now, he’s going to get bigger and stronger while his parents age and grow weaker. It’s commendable what they’re doing for their son right now but it’s not sustainable.
I love seeing his dad beam with pride when you asked about the pictures. Both parents smile so big talking about Aiden.
This sounds like a tortured existence. Especially for the parents.
Yeah but that's there son tho.n
These are great parents. I was imagining what Aiden’s life would have been like 100 years ago…he probably wouldn’t have lived with a loving family, and it’s possible that no one would have seen the things that make him so special.
You can see how much love these parents have for Aidan. I hope they can find respite care and therapy services (if they don't have them already) to help combat their PTSD symptoms. I also hope that Aidan never has to interact with law enforcement during a meltdown or while eloping. I wish nothing but the best for this beautiful family!
I love how his parents don’t try and “fix” him but instead enter his world and respect his needs as valid needs and not “bad behaviour”
@@jacobus57I think you are misjudging them accepting the situation of who he genetically is by loving, nurturing and interacting with him mindful of those limitations with them being “indulgent or lenient”. These are obviously intelligent people with a realistic insight into their son’s condition and difficulties who no doubt find his aggressive episodes challenging and distressing as well as understanding the implications for their son - they stated they are seeking professional assistance dealing with this but due to his literal neurological wiring and chemistry certain things are simply not going to be possible.
These parents have obviously invested an incredible amount of time and energy into their son and have likely tried more therapies and programs than we even know exist.
They described his behavior as violent, said he attacks them during severe meltdowns, and has asked for support from his developmental pediatrician. This is not a good situation at all.
@@lisamiranda4867that’s not all the time, and I’m sure they are finding ways to make that better.
@@lisamiranda4867that’s not the part I’m talking about obviously
@@lisamiranda4867most viewers want to put a positive spin on this arrangement. I appreciate your honesty and realistic commentary. The parents have no control in their household. They have no life of their own. They are living every moment on guard. It was exhausting just watching the interactions. It was a wise decision for them not to have more children. Not only because they don't have the time to give another child, but he/she could be endangered from the brother. I'm not being mean. This family does need some assistance. Respite care would be wonderful.
Totally understand when she says all the different diagnoses don't really mean anything anymore. If I have to list my daughter's diagnoses I always forget a few things... they don't impact so I forget them.
I really like the camera system in the house . Noise canceling headphones are an excellent idea for Aiden .
First, from one curly girl to another, the mom's curl game is on point! :D Second, I'm in awe of the loving environment they've put in place for their beautiful son.
As a lifelong “straight” hair girl😢, I LOVE her hair!❤
I have a friend who has a 15yr old son with Dup15q as well. He has to wear an ankle tracker and occasionally elopes even when they put all the safe-guards in-place, and they have a good relationship with the local PD on how to best observe and not try andxrestrain until they're contacted etc. It takes a village to keep our special needs kids safe and their families supported!
Hey, I know them! Aidan came to our autistic twins' birthday party when they were all much younger. So cool that Chris visited them. 👍
Can you say where ?
@@irishgirl1753 We live in Colorado. Is that what you mean?
@@jeric0777 yes thanks god bless 🫶
This one literally made me cry, just because these parents are so beautiful and they're both so amazing and watching him and his dad is what really got to my heart. And God bless this beautiful family forever and always❤
What happens to someone like Aidan when his parents/caregivers get too old to take care of them? It's sad that we don't have any sort of system set up to better support parents in this situation
Thinking the same thing my eldest cousin on my father’s side has cerebral palsy, and his caregiver is my uncle. Unfortunately my father passed - at 65, and my uncle is exhibiting the same symptoms my father did. Luckily my cousin (his two year old younger sister) has legal guardian ship over her brother if my uncle passed early.
I lost my father early, and my husband prior to his 30th birthday. I have no children, but I’d imagine they would have to line up various arrangements for their future.. It’s just a realistic and responsible parenting decision. Especially ahead of time.. Wish Chris would have asked this question…
Your family reminds me so much of ours! Oh, how thankful, I am for your sharing! We can’t talk either! Lol! My husband and I are older and I think what a blessing that is! God bless you both! Wish we could just hang out! Love to y’all! Thank you!
The parents burden is HUGE. Now that he is an adult and they are having a very difficult time controlling him decisions have to be made that is heart-breaking. What ONE chromosome does to the human body is remarkable. We are such amazing creatures when we are ....
I doubt the there son is a burden to them.
I agree. You can see they're exhausted. They love and care for him but they're tired. Especially mom.
"There's definitely some PTSD there because you are attacked". This is a lot fot these dedicated parents...
Trying to obtain all needs as a disabled person itself can bring traumatic experiences, and many around will go through trauma too.
it is going to be harder when parents grow older... i feel sad too.
This couple should be nominated for parents of the year. ❤
These parents deserve an award! I'm inspired. Thank you
I have so much love for Aidan’s parents, he is so blessed to have them, I can feel how deep is his mother’s and father’s love for him, precious 🥹💕
I am a 68-year-old man from the Netherlands and have worked with children and adults with mental, physical or multiple disabilities all my working life and I have always enjoyed my work immensely. First of all, I want to express my respect for you two, although I enjoyed going to work, I was often happy to leave work and go home because it can also be exhausting. Unfortunately, this is difficult for you because you care for him so lovingly yourself. Respect again. It's a pity that I live so far away from you, otherwise, I would be happy to take over a few hours every week to give you some peace and quiet to recharge. I hope that there are people in your area who have the time and knowledge to give you a little of their time and are willing to take care of your beautiful child, even if it is only for a few hours. Greetings and lots of love from the Netherlands. ❤
Dank u wel ❤ Ik kom uit Turkei want u weet dat iedereen zijn mens eerst.
Aiden is beautiful! My granddaughter has Autism and the hardest part is people understanding and excepting her ways. She’s beautiful in every-way. She’s my heart!! God Bless your family.
He's violent, through no fault of his own. That's very dangerous "beauty."
@@jacobus57 Everyone has challenges. That doesn't mean they don't also have beauty.
@@kaclamathe violence isn't a challenge. It's a behavior that is not in any way beautiful. This is a traumatized family living in denial.
@@jacobus57 I didn't say the violence was beautiful. I said the violence and beauty could coexist. Except in you, apparently. All I'm seeing is someone being pretty shitty to strangers on the internet.
@@kaclamaI'm not being s****y. I'm being realistic. I'm genuinely concerned for them and for those who might be in contact with them, based on what Aiden's parents disclosed. To in any way romanticize situations like this denies reality.
It's so great that you try to figure out where his behaviors stem from (like sticking his finger in his eye). This is exactly what the Son-Rise method does, and not enough people really try to figure out what the need is that is causing an autistic person to do something repetitively. He's really fortunate to have you as his parents.
Aiden has such a wonderful and understanding family! Thank you so much for sharing their story!
It is wonderful that you have such a strong marriage. It does take a real team, doesn’t it?!
Thank you for featuring an older child. I have two non verbal young adult children
God bless you 🙏 ❤️ 🙌 I'm so glad you get to be seen here. I am cheering you on. Hang in there. You're a true warrior.
You guys are basically doing jiu jitsu, I love it. Beautiful bond between dad and son!
This was really tough to watch. I dont really know how to explain it, and amazing to see these parents being so engaged with him. But this feels absolutely overwhelming, im not a fan of medication, but it feels that this kid could benefit a lot from it. I work with people with mental difficulties, sever autisms, aggressive attitudes, etc. And they all take some sort of meds that helps them to control their temperament a little bit. They are fully aware of everything, and can have a "normal life" (with help of people like me, not family and in a center). This is a little bit heartbreaking for the parents tbh
yeah this would be very hard, and if you read between the lines who clearly gets physical at times
A lot of dedication and love from the parents. My heart goes to 3 of them. Not an easy journey
Maybe this will be a repeat question, but what are the parents', and even other parents' like them, plan for the future. The parents will one day not be able to physically handle their child and I know they have had this discussion for years. I think an interview question about what their lives, in their plan, looks like in thirty years. And, to agree with another commentor, these parents look exhausted and rightly so. To prepare for their future and for the future of other disabled children not even yet born, the topic of adult extra need citizens must be planned out. Information on this area of reality for families like this would be so helpful.
His parents have created such a cool environment for Aidan/a child to play. They both seem like they are living their purpose but it isn't easy for them. I am so impressed by the father playing with his son. Wow. Special shout out to the anchor in the ceiling that's holding that tire swing PHEW!
This couple is admirable, but I wonder if they could get an occasional babysitter so they could spend some time actually talking together and enjoying their marriage. Aidan is special boy and deserves love like any boy.
Not only do they need time to be a couple, but each parent also needs their own individual time. Hiring qualified help for some special needs kids is prohibitively expensive.
What amazing parents! Aiden is lucky to have them and sounds like they are so grateful to have him! 💙
I'm grateful for your interviews and highlighting so many neurodiverse individuals. I'm especially grateful for this particular interview because we, too, are part of the Dup15q family. My son is 17 like Aiden and was diagnosed at age 2. Thank you for bringing Dup15 to SBSK!
Holy unconditional love! Thank you for reminding us there are truly good people in the world
i appreciate them so much for being so real. so many people need to watch this video
Aidan's parents are wonderful and so open in sharing what life is like in having a child with Dup15q syndrome. I am glad they have a small circle of friends who understand them and still try and include them in activities knowing that they may not come to most of them and may not even stay for very long. Thank you for sharing your story and sharing Aidan with the world. I definitely have learned so much from listening and watching. Much Love to you all. ❤❤❤
These parents are amazing, full of wisdom, love and self awareness. Their son is one lucky man.
These parents are simply incredible. I cannot imagine having to live like this.
This must be very difficult for a parent but what do you do? He is your child and you have to deal with it. My heart goes out to these parents because it will only get worse
I have alot of respect for the parents. You are strong willed humans for sure!
This video has brought me to tears……..it’s just so complicated! 🖖🏻
I couldn’t imagine what these parents go through:(
I wish I lived close to you because I would love to help and spend time with your son. He seems like an amazing boy. I worked with autistic kids for 19 years older, but I would just love to give you a hand and yes, Aiden is awesome. I can tell just by watching his face the love he has for you guys.
You'd need to be a pretty good wrestler!
Aww the way the dad looks at the mom is so cute. ☺️ they seem to be great parents ☺️
Aidan, your video made me so happy after I watched it! It looks like you guys had a blast filming it, even Chris was all smiles.
To Aidan’s mom and dad: I have a tremendous amount of respect for your compassion, patience and values. You’re exactly the type of people I aspire to become more like.
Parents of kids with Autism can relate! I really wish I had any friends around me who understood and wanted to hang out with our family.
i would! i have ADHD turning 26 but i love kids and teens with Autism there's definitely things we can relate to.
Oh my gosh, he reminds me of my daughter so much, but she's not his age. 😊
She has a partial deletion of her 14th chromosome. We've had genetic testing and they have found no specific diagnosis at the limit as to what they can test searching for any diseases in the genome.
My daughter doesn't stay around much either, and if she is having a day with a major need for sensory input, I have to follow her, too. She will get to the sink and get water on the floor, take everything out of the drawers, find stuff to rip apart, possibly get chips or food from the cupboard and dump out the entire bag, throw all of the hangers out of the closet and all of her toys out of the toy box, among other things. She won't stay in any locations long, like at McDonald's she didn't want to be in the play place she wants to try to go behind the counter. She tries to take people's stuff from them often and I've had someone make a comment to their child "go get your bear, we wouldn't want anyone to take your stuff." 😕
She likes physical sensory stuff more than anything. TH-cam/elmo songs/wiggles, and water. My daughter likes tickles too and now she can even say "tick!!" I also repeat her sounds back. She likes deep pressure too! She likes hard kisses on her eye, head squeezes, feet squeezes. And can say "kiss." 😊 My daughter is almost always happy too.
My daughter never gets physical, she went through a phase when the ABA clinic she was at pushed her too much and she was biting me, though. She goes to school now and goes to ABA for two hours at a different, amazing clinic that is play-based. I am afraid she could have a temper when she goes through puberty, honestly.
Sorry I keep going on and on, but I relate to a lot of what you have shown of your family. I smiled a lot watching this.😊 🥲
It is cool to see another family that has many of the same types of things going on as we do.
I enjoyed your comment. Thanks for inviting a peak into your life 😊
Maybe you and Aiden's parents should connect on social media! 💜
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Wishing you all the best and lots of strength so you and your daughter can live a happy life! Lots of internet hugs.
I don't think the parents about the teddy bear were being rude. I think they saw the situation and maybe that bear meant the world to that child. I appreciate your struggle. My 20 year old has a 19 year old cousin who was non verbal and huge since birth. My sister is 5' and he was taller and aggressive at 8. He's had such good teachers in San Diego who focus on living the best life he can. Him and my son have such a cool relationship. They get eachother in a special way. I am cheering you on. Hang in there. ❤❤
Good on you both as parents!!! You are both so devoted and happy in your own little life. I love that you took the time and effort to make the sensory playground in your basement! Interacting with him in his own ways is such a beautiful expression of love. Every human shouldn't treat every human with this level!
Really enjoyed this interview and learning about Aidan. Just shows how parents are experts in their children’s life’s ✨
Such dedicated and loving parents!! What a treat to hear their experience.
My daughter has extra chromosomes too, they have never seen or heard of someone with her specific extra chromosome. She has learning disabilities and adhd, odd and is a constant challenge to me. I have another child as well who is “normal” and she is a great support to me and helps take care of her sister.
He's probably experiencing hormonal changes and and hopefully he will get calmer as he matures.
Adolescence can be extremely hard on a normal teen much less someone like Aiden.
He's a nice looking young man.
I am so incredibly happy that SBSK has gotten their comments turned back on. I know it’s been awhile now but this community is incredible and the comments just warm my heart ❤
Exhausting, but rewarding. God bless this dear family. 🙏 ❤
I love how the parents know what their son needs and communicate with him in their own ways. My husband wrestles with our son like that, a lot of similarities that my son has, but seeing how they look in a 17 year gives me ideas of things we might need to do when our son gets older. I love the video cameras around the house so he can be on his own but can make sure he is save still.
What an amazing family. Having worked in a residential program with children on the spectrum who could and did exhibit severe behaviors, both self-injurious and aggressive, I can really relate to their experiences with their son. Both good and bad. Kudos to them for their love and patience. Thank you for sharing their story with us.
I worked in direct care for over 20 yrs with special needs adults. Aiden is adorable! I commend the parents & can sympathize with them in dealing with behavioral challenges. My prayers and blessings❤😊
Wow, the great lengths that these parents are willing to be a part of his world is so inspirational. They sacrifice a lot to love their son, I"m so blessed to see this. Not every parent is willing to do that.
Their marriage and this family is to be envied. Great work guys. Role models for us all.
I'll be honest, this one was difficult to watch. I really hope Aidan's parents have the support and resources they need to manage him; the mom already having CPTSD from his raising and he might not even be done growing is concerning, and they're getting older while he's entering the prime of his life. I mean this genuinely and I'm sorry if it's rude, but is it ethical to bring Aidan into stores like Target knowing that he has a very small amount of patience, he's known to flee, *and* he's physically aggressive when triggered? His parents talk about him needing to build his tolerance to things, but does he? Can he? Knowing that he will never need to go grocery shopping or be submitted to those kinds of stressors and stimuli that he's not even presented with at home, is it ethical to submit him to an experience with the knowledge that it will be triggering for him and it may end in someones harm, including his own? I'm not sure I understand, and I would like to. (I am autistic and struggle with meltdowns myself, for context.)
I like your comment and just wanted to respond. I think you think they are trying to force Aidan to conform to society and I don’t think that is what they are trying to do. From what I gathered they are trying to help Aidan understand that having to wait for something should not trigger a fight of flight response. They are teaching him a important life lesson while they are still around so he can learn it in the safest way to they and the professionals they are consulting with know how. This is not so he can go shopping this is so when he is not living at home anymore and he is in a situation where he needs to know how to deal with what he is feeling in a safe way when patient comes up. Like say he is living in a facility and a care giver is taking care of another person who has a more urgent situation. If he acts the way he does now he will be putting himself and others safety at risk. They just want their son to be prepared for the world we live in when they are not around to help any more, like any good parent I think thinks.
Absolutely beautiful, loving family. Wishing the 3 of you all the very best wishes for the future & hope Aidan continues to have a happy, healthy life as he enters adulthood. With love from my family & I over here in Northern Ireland 💚 xx
Hello Aiden. You are an amazing individual with an amazing family!
Wow. He's a lot to deal with. He's big, strong, and unpredictable.
What extraordinary parents - they obviously love their son very much and have worked incredibly hard to give him the best life possible yet are honest and have insight into the challenges they face.
I’m sure they worry about his future and what it will look like but are also focussed on making the most of the present. I sincerely hope they have the ongoing support in their journey. I respect them for their decision not to have more children due to awareness of how much time and energy they would need to invest in their son.
I relate so much! There are so many families like ours and I am so thankful this channel spotlights it. We are here and there are lots of us, you are never alone!!!
This family is incredible! I love the sensory rooms and space they have. The time, dedication and love the parents share with their son is heartwarming, but at the same time I feel for them, it’s not easy. I wish them all the best in life. Aiden is an incredibly lucky young man to have such cool parents!
What dedicated, strong, kind, smart parents. My heart goes out to them as they traverse a life in which their son takes so much extra care.
Totally can relate to this family as my 15 years old is non verbal