Genetic Results For Autism Family
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- Опубліковано 29 вер 2024
- The FINAL genetics video to our special needs family!! I share the teenagers autism genetic test results finding out if they have the 15q13.3 microdeletion or any other chromosomal abnormalities. The test performed was a chromosomal array test testing ALL chromosomes and while this isn't a definite autism test, it did give our family some crucial information 💞
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Geneticist here - just wanted to say that you always do a great job explaining the genetics results clearly and accurately!
I appreciate a lot your videos, they are helping a lot to understand more about the spectrum and I can also relate it to my family and myself. Thank you for sharing all this to the world and being so specific and open with your children diagnosis and all their traits. I find it all very interesting and informative, and i'm glad I found your channel.
I found out some years ago when I first went in to see my psychiatrist for the first time to be a valuated he also wanted to have a genetic chromosome in her blood work done as well and it turns out I have a chroma zone that is kind of completely messed up to where I have to have folic acid and now I find out recently that I have a disease and I can’t quite remember the name of it but that disease also affects my immune system tour I am susceptible to getting sick because of it so genetics is a very promising little stuff is very complicated interesting but it is always nice to know what you have going on in your own chromosomes because yeah you know just never know what could happen to you or what you could be born with and what all could occur as you were growing up considering now within the last few years I have been diagnosed with borderline personality disorder bipolar to PTSD generalized anxiety disorder and I thought and I still have diagnosed with dissociative identity disorder and now I have major depressive disorder and possibly autism my life is so messed up because I also have learning disabilities and mild MR and I just wish my mom would’ve told me some of my medical stuff when I was younger everything had been sealed of my medical records to our doctors were told not to tell me now that I’m finding out more on my own to current doctors I’m like not happy the fact that I was not told about some things and I was born with rubella because my birth mother had rubella in the first trimester so I ended up with multiple birth defects I was born with cataracts so I’m also legally blind and just everything is just so messed up it’s hard to keep track of all the stuff I even had a valve that supposed to close at birth that was not closed and nobody noticed it until I was near four years old so I bled internally for all that time I’m lucky to be alive so now because of it I carry rubella so yeah looking at genetics really can get some answers or where to look at for potential problems hope this message isn’t too long for people to pay attention to and read if you made it this far thank you for reading this
This is unrelated to the main point of the video, but I'm so impressed with Liam & his mask! He keeps it on better than lots of adults do! Good job momma :)
He does so so good with it
Literally in general kids did so much better than adults. They weren’t the ones throwing tantrums over it
I have 3 kids and my 2-year-old daughter is on the spectrum. Watching your vlogs are such an encouragement to me. I don’t know how you do it every day and still have so much energy and positivity! Thank you for being honest and for just being YOU.
Thank you 😭
I know you’ve got so much going on and you’re tired so I just wanted to say you’re doing amazing! What you’re doing isn’t easy so remember to pat yourself on the back. Love your family girl!
What a beautiful comment. I’m glad Stephanie read it because she really is an amazing mother to her children. Thank you for spreading positivity in this world 🌎❤️
They are safest till at least 4. Your spine doesn't ossify completely until then. My 4 year old is still rearfacing until he maxes t his seat. Thsnk you sooooo much for saying why you are keeping him that way. More people really need to know
My son is 4 and still rear facing too. He still fits. He's actually like, 39" tall and maybe 30lbs in underpants. He's little. Just like me. I think he'll fit for a while...
Yeah my youngest is about to turn 3 next month and is still rear facing. My older 2 maxed out the weight limit about 3 months after their 3rd birthdays and they were at the top of the growth charts. He is a little more average sized so we probably will be able to keep him rear facing until he is at least 3.5
I rearfaced my son until the day before he turned 4. In Australia you have to forward face at 4 ☹
I was lucky to have been able to keep my son rear facing till right before 3. He hit the weight limit on his seat (50 pounds) so I had to switch him and he just outgrew his 5 point harness by weight (65 pounds) at 4 but I’m trying to find another seat that isn’t much for 5 point harness cuz he won’t sit right.
Yup. My oldest turned a few days after his 4th birthday because he was already only a couple pounds away from maxing out his seat for rear facing (he’s big for his age) but my younger two kids are smaller and I plan to keep them rear facing until they are 5.
Stephanie your actually so smart the way you just memorise chromosomes it’s really quite cool
I have a photographic memory lol
I know every moment of your life, good and bad isn’t on camera, but since moving to Colorado, it really seems like the 4 younger kiddos are doing so awesome and learning so much! I’m so happy for you and your family! Love your channels!
Thank you for talking about this and writing the table with child name and genetic differences as I can process written words better than speech so understand better
It’s confusing so I thought it would be helpful to have a visual guide :)
Thank you for sharing this info. I think you are at the cutting edge of genetics for the everyday family. How many of us moms have been shamed and blamed for our child’s atypical development when it’s all in the genetics? Nature vs. nurture. ❤️
Genetics are super interesting, I was curious before if some of Danielle's health issues were linked to genetics now I suppose you guys know and have some ideas what to look out for.
I knew autism was genetic. I had a self proclaimed "expert " argue with me. I told her "there's no way all these parents with autism having children also with autism is a coincidence! She goes "well it is! Because there's no such thing as sn autism gene. Genetics have nothing to do with it, it's just all by chance" 🙄
Though different genetic disorders seem to be able to cause autism because with many with autism who they have found have a genetic reason for it it's not about same genes or disorders. And then not everyone seem to always get autism either, like it seems to be pretty common to have autism and ehlers danlos syndrome though most people with ehlers danlos syndrome don't have autism.
New subscriber here ! I have 3 kids and my oldest daughter is on the spectrum! I have been binge watching your videos! 😊
Welcome! So happy to have you here :)
Thank you for talking about extended rear facing!
I LOVE HOW AWARE YOU ARE ABOUT CAR SAFETY!!!!!
This was really interesting think my little girl mite have autism we are waiting for the results hope you all stay safe
Plus with Liam he’s developmentally behind so it’s better for him to be rf he fits well and seems happy that way.
You have the most adorable children ever!! I love watching your vlogs! You are the most amazing mother ever!
Glad you are like me in your thinking. I only get thinks I know that will be used. Just because you can get something doesn’t mean you should. We need to get out of entitlement thinking. There are not infinite resources and there are so many kids out there that need stuff. You are so I tuned to your kids and I so commend that. 💕
I never picked up on the fact that we had that in common. I also had 3 kids within 3 years and my 3rd is my austistic kiddo. I went on to have 3 more littles after that so 6 kids here as well. I believe we live where you all used to live in FL. It would have been nice to know you guys when you were in the area.
They say rear facing until 4 now!
Thank you!! It sounds good to me 👍
This was very interesting, thank you for sharing with your kids granting permission. When I was 15 I nearly died in hospital several times, my mum wanted to sue but I wouldn’t let her... she was right. Hopefully your kids won’t regret you listening to them as I do but be prepared that it could upset them at a later date. I don’t blame mum because she was giving me the decision & I was the one who made the wrong choice
Wanting to sue and having information about yourself is not the same though. I am so sorry that happened to you!
Very very informative Stephanie! This was so interesting. Also the maturity levels your teenagers possess are admirable.
Was there ever a discussion about if Danielles dad should be tested? Or are her results enough in line with the other family members results that there would likely be nothing new learned?
As a momma with a little girl that has a talking device and needs it, I sure appreciate parents that are honest about the need for these devices. These talking devices are so amazing and I love “hearing” my daughter being able to talk to us, she know exactly what she wants to tell us even though she is unable to use her own voice.
I have been really like kinda wanted to try one of those on my bad days it actually might help me!!
Awesome explanations! Genetics are really interesting and I'm sure they will all be glad to have this information as early as possible.
You did such a great job of explaining all of the genetics information!
I am autistic diagnosed at 5 i am now 22 I don't think I show any signs of being autistic. Can that happen
I was diagnosed at 12 because I didn't show typical signs. My son has more typical stuff, but not covered in those basic questions or "here's what autism is" explanations.(most of those questionnaires online always say both of us as not likely autistic)
Also consider if you had a typical path, went to school, did sports, religion, got a typical job etc. Masking basically is encouraged or you learn early on how to fit in or not stand out at least.
So interesting. I love that science can give you some insight into each individual. You are great how together you are, how you can advocate for each child and everything you do to help them. They are getting a great start with you. You leave no stone unturned when it comes to your children. It's impressive. 👍
I absolutely ❤️ y'all & I've also lead a gr8 deal about autism from watch ur channel. I'm going to b getting an evaluation done on myself here soon cuz I worried that I am the reason to y my boys were diagnosed w/autism. I send my ❤️ & 🙏 to y'all ❣️
Thank you for making this video! I know you have a lot on your plate! You are doing a wonderful job!
Hey hon, to me you are super mum! I feel sad to an extent that both of you and the kiddos face some of the challenges that you do, but for one you luv em with your whole heart no matter what or how hard life can be! 2, I just want to say, and I’m sure I’m not the only mum on here but seeing your videos helps me a lot having a family that can relate to the struggles we’ve been through and continue on with. I pray for strength for you and hubby and I know things will be alright.
🧩 ♥️💛💙🌻🙏🦋🦋🦽 🥰🇨🇦
Has your mom or sisters been tested to see if you got it from your mom and if your siblings have the abnormalities?
No insurance wouldn’t pay for it
Interesting!! I’m missing a gen too. The shox gen. It causes dwarfism. Zo we did a special icsi test with pgd to make sure my daughter didn’t had the missing gen. She’s 5 months now and doesn’t have dwarfism like me. Butttttr my husband has autism. And is see some signs in her....
Thank you for making these informative videos!
Do you know if you and kids have MTHFR gene mutation? Methylation issues? Can be super helpful to know, in addition to what you’ve already had tested.
We don’t. That or fragile x :)
Lex looks like a little Lonnie Jr. ; very handsome boys.
You are so thorough and detailed. You are an amazing family! Thank you again for sharing this with all of us!!
Hey girl!! My son has 3-18 crom and 6 is broken the dr explains that its like he has 3 book shelf and we have to do more testing to read the books on his shelf his dad and I got ours done and thors dad has the same. I love your videos because it makes more sense to me! Hugs!!
He’s doing great with that mask! Great job Liam!
Hello Stephanie! I love you all so much!! I LOVE BEING A MEMBER OF YOUR LANDING CREW!
Excellent video! Good job, mom!
So the genetic testing you guys had done looked at dominant genetic disorders? When you said 50% chance, that means that these deletions/duplications are dominant right?
Do you mind sharing, what Liam eats that is nonfood? How do you prevent him from eating it? I’m assuming just keep the things away from him, was just wondering if there was something specific you did. Thank you in advance!
Hello very nice to connect with mommies like me💙I have twin teenagers both on the spectrum 💙💙🧩🧩🙏
What is the exact name of the test they had done....we had a few genetic test done for my son with autism and they all came back normal, so I'm curious if he had the same test or not.
I wonder if I have any abnormalities. I’m diagnosed with autism, ADHD, migraines, and previously, depression. It is also suspected and highly likely that I have dyscalculia, generalized joint hypermobility/joint hypermobility syndrome, speech issues, asthma, visual snow syndrome, and visual processing disorder. My mom has A LOT of autism traits, and my dad has A LOT of ADHD traits. My brother also has significant traits of both. Interesting
Might be worth checking before you have kids if you don't have any already. Parenting is hard when neither the parents nor the children have extra challenges. To be honest, kids can really be little jerks and they challenge your patience under the very best circumstances when they're being little turds. I can't imagine parenting a special needs child with special needs myself. Not that it's impossible but I think it would be really hard to do well.
@@franny5295 I actually think I’d have a harder time parenting a typical kid. I truly don’t understand neurotypical people, but I easily connect with neurodivergent people. I’d have no idea how to parent a typical kid.
That's weird. I have Asperger's as a diagnosis but, zero chromosomes abnormalities!! I did a genetic test because I'm over 35 and pregnant but, every thing became clear. Is that normal? Can u have a Autism diagnosis with zero chromosomes abnormalities???🤔
Yes, not everyone who’s autistic has a genetic abnormality
So.. if I want these test for my family, what is the name of the test?
U are amazing u should have millions of views bless u and ur sweet amazing family each and every one of u all are beautiful
Thank you for sharing Stephanie. Genetics are definitely very interesting.
Where are you located? Trying to find a place where my son can get services. Our state sucks. Thank you
Colorado :)
This makes alot more sense to me because before my baby I was pregnant before with a blighted ovum and was told my body realized there was something wrong with babies chromosomes so baby didn't form makes more sense now
Thank you for sharing such personal information with us. 💜
I keep them rear as long as possible as well! So glad to see someone with as big a following as you, promoting Extended Rearfacing!! I did notice that one of his straps were twisted, I'm totally not trying to be one of those shamey moms, I just know you're obviously passionate about your kids being as safe as possible in the car!!
Thank you for letting me know!! ❤️
You are such a great advocate for your children and your information is very educational 👍♾
Thankyou for all the information it help me with my grandson autism and any questions I may be having, about his future
I'm curious as to which chromosome is affected on Lonnie Jr. I know you said over and over that it was chromosome 16, but the visual that you had in the video said chromosome 17.
Lonnie carries the chromosome 17 abnormality, Lonnie Jr has the chromosome 16 abnormality. The visual explained it accurately.
Did you have to pay or did insurance pay for you to get for autism in New York State her honey worker said they won’t test my daughter over 21 l wonder if it’s just New York Or she doesn’t know what she’s talking about don’t know how to find out
Insurance paid for it for us
Danielle is so beautiful . She is blossoming .
You shouldn't feel the need to explain why you had more kids. Have 100 kids if you want girl it's your life and you take care of them all very well. That's all that matters
@@glogrann8562 youre makin some broad assumptions here
This was so interesting to me. I have a lot of medical issues, including autism, mental health issues, physical health issues, and vision issues (same exact as penelope's vision issues). I wish I had the money to look at my DNA.
About the rear facing car set I was about to ask that then I thought the weight requirements.
Lonnie Jr. in the thumbnail makes me laugh.
Them curls though!
thank you for sharing about genetic results my special needs daughter has 17p13.3 duplication and 17q23.2 deletion and i carry 17p13.3 duplication
Please, what's the name of the test? Thanks
Do you or Lonnie smoke? Athena can be related to parent smoking.y dad smoked for most of his 20s and I have athsma.
Also this video was so interesting. I don’t have kids but we are TTC and our fertility clinic has referred us to a geneticist for something in my test results. Thank you for sharing!
Nope. We have never smoked. Asthma runs on her dad's side so I am not too surprised.
@@OurLANDingCrew8 I didn’t realize it had a genetic component as well, I thought it was mostly environmental. How interesting! Thanks for the reply!
It can be both. It's not abnormal for an asthmatic child to be born from an asthmatic family :)
Why did your son have to put his hand behind his back when he was climbing the stairs?
I don’t know, but I would guess he should learn to not need to use both hands to support himself while going up and down stairs. Sometimes you climb stairs that are wide, where you can’t reach both sides, or there is only one rail. Or there are others climbing the stairs at the same time, passing you, so you can’t hold on to both sides.
Iiams starting to look like lex so cute
A ferritin of 13.7 is WAY too low. Regular doctors don’t think low ferritin is as big of a deal, but a hemotologist would say anything under 100 is low. 13 is way too low! I had pica and my ferritin was 3
That’s his hemoglobin, not his ferritin. 12.0 and above is “normal”
@@OurLANDingCrew8 ohhh okay! That’s a good level then!
Do you know what his ferritin is? That’s the true marker of iron stores, since iron in the blood can be up or down during the day depending on what he ate. And just so you know, I’m not saying you’re ignorant (because you are SO on top of all this!). I’ve just noticed that most doctors completely dismiss low ferritin and it can cause so many issues. I’m in an iron deficiency Facebook geoup and the number of women who’ve been told their symptoms are “all in their head” is insane. Most doctors aren’t very knowledgeable about iron and will tell you levels under 100 or even 50 are normal and they’re not, a hemotologist would be concerned. So even if your doctor says it’s okay, a lot of them just don’t know that it’s not. I’m like an evangelist about iron ever since I’ve gone through all this because so many people are deficient and feel so much better after they supplement. I had pica too, I craved laundry detergent! It’s a very odd feeling :)
With his hemoglobin being so high and being a sensory seeker, they think it's more an autism thing or that he doesn't fully have taste buds.
@@OurLANDingCrew8 makes sense! Thanks so much for replying. You have a beautiful family and your kids are lucky to have you ☺️
I have adhd, learning disabilities, EoE, along with other diseases and disabilities. I am on the spectrum too.
Thank you so much! This video was very helpful and relatable. Thanks for your content!
I’m not to sure because I don’t know much about Penelope’s eye condition, but staring off can also be an eye thing. I am visually impaired, (I use a cane and everything) and as a kid and even as an adult, I stare at things like lights. Maybe try and see if she’s staring at any one specific thing.
That's what I thought too and why I am not SUPER concerned because she always comes to if we waved our hand in front of her face and it looks more like a visual thing
@@OurLANDingCrew8 yeah, I definitely agree! Thanks for replying! I love your channel and I know you always do right by your kids, so I love learning while seeing your journey. Thank you!
Hey Steph, I have a question regarding genetic testing: Can you take it even if you don’t have children of your own?
Yes but insurance probably won’t pay for it unless there’s a reason
@@OurLANDingCrew8 Thank you. I live in another state, so I’ll see how that turns out.
ABA THERAPY IS ABUSIVE
You have convinced me to get genetic testing. Thank you for being so open and honest about your and my children's journeys.
This video is so Informative! If you see this, I messaged you on IG with questions and looking for advice
I will look for it!
@@OurLANDingCrew8 Thank you!
Any tips for how you got Liam to wear his mask?
I think it’s the type of mask as the regular ones he just rips off
Payton was 4 when i turned her car seat around i agree with you
Do you think that the two oldest will encourage their future partners to get the genetics test too as well? And how would I go about getting tested? This video was very informative I really like how explained everything.
I don’t think without a reason, it’s something that insurance will cover if that makes sense.
Absolutely on keeping your kiddos rear facing !!! Im a Nanny and I didn't turn 1 child forward right b4 his 4th birthday and the other over 3 yrs.
I wish ppl researched the benefits of rear facing. I mean it's the safest position.
Mam do you have care taker at ur home for ur babies ❓
I am the caretaker 😆
@@OurLANDingCrew8 how do u manage ❓ I hv only one n sometimes I become nervous 😭😭😭
I don’t manage well. I just try my best!
Thanks for another interesting video! You're very good at explaining things, and I appreciate it!
I don't love how it seems that you are feeling pressured to answer every question. It's nobody's business, you don't need to tell us anything, just what you choose to.
Blessings to you and your family!
I never feel obligated or pressured. I answer only what I want to answer.
wow im enlightened with this vlog thanks a lot stephanie
Do you use something to get teeth so white?
How do you ask your doctor to get the test done I’ve tried and out doctors don’t know what to do... my son has autism but would like to know atuff
Ask to be referred to a geneticist.
My son who has autism has EoE
Does he have his own tablet
Very informative video thank you for sharing
I love your family thank you for sharing
If you knew then whatnot know now would you have proceeded to have more children after Noah. I have family members with autism and I seen their high need take a toll on their parent marriage.
No I wouldn't have and not because of autism but because of all the other medical issues that could come but everything happens for a reason
In older videos she said she would no matter what.... Also he was sterile and they paid to reverse it after they already had two kids with autism.. went on to have 2 more. Look at the older videos..
That is too bad that the teenagers carry the chromosome abnormality. It must be hard knowing that there is a possibility that you could have a child with a disability. Tell them that there is something they could do though...I have heard of people that do IVF and have the embryos tested genetically before they are transferred, they could freeze the ones that are not affected and discard the ones that are. They can even tell them the gender of them. So with today's medical advancements there is no reason why they can't have a biological child that is not affected.
The genetic testing they do on embryos doesn’t include this array testing but it could in the future. Medicine is advancing every day
My dads brother is autistic and me and my sister are both autistic so it's possible. Nothing wrong with us though :)
About rear - facing, wow do people ask that a lot. Kids should go rear - facing until they're at least 4 years old AND weigh 44 pounds. Until 4 years old their necks are not strong enough to stand a frontal collision.
Stephanie-
Where did you go to get your family’s genetic testing done?
The children’s hospital.
Hi I’m new to your channel, i have a 2 year old with autism and she gets therapy as well. Although i am living in NY we wanted to relocated to FL and having you speak about the services that are offered there are relieving.
Your house is so nice!
I just found your site a few weeks ago, & are starting to listen to all your vids, do to we just started the process (late-is) with one child but the 1 visit we have had so far showed that he is ASD but not sure ware on the spectrum he is yet & from that visit we figured out our 3 oldest (6,5,5) are all on the spectrum, so ive been working on learning what all that means or can mean from those who are hands on with it. knowing there are other large families out there with more then one is encouraging that it is possible to juggle it all as we learn about it, & as our family is still growing. I have a feeling they get it from me but I have never been evaluated for anything my moms philosophy was/is to beat it out & I know its not something that they have control over its a part of who they are. (do to that we dont let my family be around our children unsupervised, & its getting to the point that we dont want them around them at all do to bulling & verbal abuse that I got that she is now doing to them) any advise on steps that we should take & in what order or tips that can help in homeschooling them & tools that you have found to work with all your children.
So I'm confused. How can have it but not autism?
First comment love your vlogs
💗
Hello beautiful family
Great video :)