One of a Kind Twins (Under 50 Known Cases)
Вставка
- Опубліковано 26 вер 2024
- Alessia was born with a rare brain condition. Her twin, Sophia, shared the same amniotic sac and placenta while in utero. Now the sisters are growing up and learning to love each other while on different life paths.
Alessia's disabilities include rhombencephalosynapsis, hearing visual impairment, Chiari malformation, hydrocephalus, feeding tube dependency.
Follow Alessia's family at / stephydetjen
Support SBSK at / sbsk
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
Thanks for watching this beautiful family's story! Stephanie, Alessia’s mom, wrote a book to help others who are in a similar situation. You can check it out at amzn.to/3ygM1Ms
Thanks for uploading the videos.
I have the same brain malformation as Alessia. It’s important to note that Rhombencephalosynapsis is a spectrum, and a lot of us have coexisting conditions such as Autism and ADHD. We don’t know either what the cause, as you can see while Alessia and Sophia are identical twins and only Alessia has the disorder.
Oh, good! Glad she was able to find the time and energy to write a book! I have it in my cart. xo
I also have hydrocephalus but my last vp shunt broke in 2017 so they performed an operation in my brain to help the spinal fluid go through my stomach. What I am trying to say is that there’s other solutions to prevent having a vp shunt.
Vp shunt is a very risky procedure to endure whereas creating a passage in the brain for the spinal fluid is a permanent solution that prevents further issues.
I love these parents! That being said, my heart Goes to her twin. Survivors guilt is real
Poor Sophia seems to be trying so hard to convince herself that her sister is fun and a blessing but she almost seems to have guilt for being the twin without the disability. Its just a feeling i get by watching /listening to her talk. Its like survivors guilt. I hope she learns this isn’t her fault, bc she hears her mom talk about the fact that they’re mono mono twins and she got the most nutrients and what she needed and her sister didn’t.
Chris, thank you so much for honoring siblings' stories. My triplet sister Rachel had severe cerebral palsy and passed away when we were 9 almost 10. Getting older without her is the hardest thing I’ve ever done. I didn't know for years that not everyone had a sister like mine. It's the most beautiful and the most isolating experience.
It’s deffo not the same, but I have a sibling that had epilepsy, and it was only after all of it finally ended (surgery) that I realized what I was going through at the time. You are right, it is super isolating to be a sibling of someone with a disability or severe illness. I wish there was more support for us as well. Thankfully I’ve found a few SIBLING support groups on FB that helped.
God bless you Emily. Your experience is a very difficult one. You didn’t say how long ago you were 9 almost 10. You said you were triplets so I am hoping you and your sibling can discuss this together and find comfort together. I have known twins that were separated by death and sometimes the surviving twin is filled with guilt because they survived. Finding peace in this situation is a very personal journey and nothing I say can give it to you. But just so you know I recognize how difficult it is and it doesn’t subtract from your value at all. If you don’t mind I would like to include you and your family in my nightly prayers.
God be with you
@@bythegraceofgod993 thank you! My sister will has been gone 17 years in October. I appreciate your prayers as we continue to figure out life without her.
Chris is a modern day saint
hey im a triplet too! one time my sister was missing on a theme park uh i threw a tantrum
I feel for her twin. Seems she's trying to give the answers she thinks she should. I would think the siblings would have some sort of burnout as well.
Really good to hear both parents be so open about the struggles they're going through
It’s so important for other families to see the struggles others are going through.
Sophia’s answer to the question: “what’s it like to be twins?” Were already heartbreaking. The things she said were clearly not her own words but sentences she has been taught, like: I should be very grateful, I am very grateful…
It doesn’t sound natural. It sounds like adults are managing the kids’ attitude towards it a lot. That’s understandable, but there should be space for the kids to say how they really feel at times. It’s hard sometimes. Abd its OK to say that.
They all said it was hard at times. Also you have to understand that kids sometimes just pick up on what there parents say to themselves and they copy it. It usually isn't the parent making them say it. They just learn everything from there parents. Maybe they just aren't sugar coating there feelings like most people do. You could be right tho,and maybe she's being told to be grateful that she didn't have the same issues, especially sinse it started in the womb with having to share a placenta and only one twin got the nutrients she needed. But I doubt that the parents try to make her feel that way. Maybe they just keep saying they are greatful she turned out ok.
@@Hizwife it's more so that kids going though that don't really want to say they're not doing okay, because the situation is delicate and don't wanna put any more stress on the parents. at least that's what I get from it, having lived a similar thing growing up.
Sending hugs to this momma. It’s lovely that the kinds can be honest. Their mom is doing such an amazing job. I couldn’t even imagine walking in her shoes for a second. I hope she gets some respite care. I will be praying for the family.💜💜
The dad is also doing a good job. 👍
Very well said.
Yes! Respite care is so important.
Your family is blessed by God in a way most of us are not. It was a beautiful and tearful experience for me to listen to your responses. Though I don’t know your name, I will pray for all of you. God knows what your needs are and He is good all the time. The determination to be positive is evident in the way the other three children have embraced compassion; they will be wonderful adults.
Sophia seems depressed and under a lot of pressure. Hearing her say “I should love my sister - and I do” felt off in some way. It seems like the whole family is stretched like a rubber band about to break.
whole family looks like they need a good vacation 🥺
yeah that raised a red flag for me too. the soda bottle is bubbling up about to burst
I mean, she obviously noticed how her parents felt, even though as a child, she mustn't have understood clearly everything that's going. Not just her sister's struggles, but also her parents', including the brute effects of their depression/ptsd before they were properly diagnosed and started going to therapy. It's easy to absorb all of these feelings to yourself and not talk about it to avoid "troubling" your parents more when they need to take care of your sister. Typical sibling behavior that I've seen it on myself and others. That's why I can relate to this family a lot. Doesn't mean she doesn't love her sister, like Sophia herself said, it's just the situation that's complicated. But her parents are improving, so they'll get better together as a family. I hope Alessia manages to go to school as well
I am really hoping someone steps in and gives her the care she needs. I am deeply concerned about her future and her mental health.
I wish it was more appropriate to go more deeply into her negative feelings and to validate her struggles with her sister , but i understand that's a limitation of an interview relying on public consumption. I think she seems very sad she doesn't have an able sister as well. And i know some people gonna think that's horrible, but I'm also disabled and we can't candy coat the truth... It is hard for the people around us, especially siblings. It's often treated like mourning for parents and the siblings aren't allowed their mourning.
Your absolutely right..this family needs help..and medical treatment properly..Kennedy Krieger in Maryland..c what's going on
I love the older brother. He is so supportive and caring.
I read a lot of the comments and most everyone says what a beautiful they are, which they are. But this little girl is non-stop active, and exhausting. Ten minutes into this video I felt exhausted watching the constant, non-stop activity of this child. I can’t imagine being in the same household 24/7. I feel sad for the parents, especially the mother not finding/having the resources to educate this child and having to constantly watch and supervise her. As a mother, you want to care and provide for your children, but having a child with the issues this child has, is hard.
I don't see how this mom does it... exhausting
yeah i wish they could get more help like i can see it becoming easier once the other siblings get older and mature then they won’t be juggling so much at once
Yes, I really can't see much of how beautiful and sweet she is when I only see a very exhausted and depressed family trying to get by by telling each other how much fun it is to have her. They really need more help or everything will fall to pieces one day.
I agree, this is very sad. I cannot image how difficult it will get when she continues to grow.
I think they're getting as close to describing it as they dare.
It’s sad to hear Alessia isn’t able to be educated but if Mom can’t even get her to sit still in the car, that’s incredibly dangerous. 🙁 She has no impulse control and running around the classroom banging her head is a safety issue for other students and the special ed teachers. It sounds like she needs very specialized care that mainstream school can’t provide. I’m sure there are schools out there like that but maybe not near Alessia. Also it sounds like Alessia will need very specialized care as she gets older, I’m not sure Mom and Dad will be able to handle her as she gets bigger and stronger (or maybe she won’t, she is so small compared to her twin). Thank you for sharing Alessia’s story, I feel sorry for this very burnt out family.
Exactly
I've never heard of identical twins where only one child has a disability. Thank you for the insight and sharing your beautiful family
Really goes to show that congenital disabilities aren't always genetic... I'd love to know what causes them. In the case of this little girl, the mum did say something about a lack of nutrients.
@@quinncreel6091 There can be a parasitic twin, where one takes all the nutrients from the other in the womb. That causes one to be much smaller and disabilities arise from that.
@@angelatully9298 It could also be how the twin was positioned and access to nutrients not necessarily parasitic twin always..
@@angelatully9298 not a parasitic twin..They had the SAME placenta so the nutrients were not distributed properly..
Twin to twin transfusion is also one cause of this, I know twins in this situation where one has cerebral palsy
The whole family is so positive and encouraging. Absolutely lovely. Bless her
Thank God mom has such positive children to help her in Alexia's care
@@jackie4350 It's sad that the children are put in that position in the first place. They need to be kids, not caretakers.
@@michaelvitale7041 How do you think the west was settled and you are afforded the life of convenience that you live & enjoy today?
Sophia is the most supportive and loving little girl... she puts a positive spin on everything along with her brother! God bless their family!
Did you see the sadness in her eyes while their mom was describing the details of her mono mono pregnancy? I'm very glad for the honesty --very refreshing --but the "just keep her alive" at all costs points to the failure of our medical establishment to know when to quit. Death is not a defeat, but it's the fate we all share. This lovely family bears so much grief it's heartbreaking.
She is too young to be put such a responsibility on her shoulders, everyone in that family is doing the best they can. Sophia seems like she needs a vacation with extended family or something like that, it doesn't seem like she has the space to get some proper rest (physical and emotional)
@@CharliieG88 What responsibility? Loving her sister?
@@jacobus57Partially agree
@@InfinitEternaLovEmmanuelYes.
I am hugely loving this new more “honest” direction. Not that any of the past videos were dishonest in any way, but there’s just something about hearing parents and siblings speaking about the real difficulties and not sugar coating them. I keep waiting to one one day see something similar to what my younger brother day (NPD & a nasty temper.. I moved out too young as his “daily affirmation” was reminding me to un-alive myself as I fail at everything and he’ll always be better at anything I think I’ll be good at. I can only be around him for 15-20 minutes at a time, and our dad really needs to be calling the cops to file elder abuse charges as he’s horrible to the man who supports his life and feels too guilty to kick him out (he’s 31!)
Please consider calling adult protective services yourself, if you think it is needed. People who aren't the one being abused are able to report concerns as well. And take care!!
I agree with your statement about being more honest, stop sugar coating and let those involved be more free to express their feelings. It certainly must be challenging for all involved to raise a child with special needs. These families are truly brave. ❤️
YOU need to call APS.
YES YES YES
Holy moly your story sounds like my husband with his brother. To this day he's never let him meet me or the kids because of his dangerous, jealous nature
These parents look absolutely exhausted. I truly feel for them, as a twin Mum myself. The siblings are lovely, patient, kind people. Sending love to this beautiful family.
My heart breaks for this family. They are warm, loving people, and the chaos is obviously overwhelming.
I identify with Stephanie so much...from the "have you tried X" from thousands of strangers, from having CPTSD from caretaker burnout from taking my son to 7 different therapies several times a weeks and traveling around the country to see specialists... Sending hugs from Argentina
Sending you hugs from England 😘
You can keep going
Your a great person and things will get better. If you ever need to talk there are people here for you including me.
The pressure of being the 'normal' twin is present on Sophia's face and in her words...the way she said "I should be grateful, and I AM" it's like she's been told that many times. Like I don't wanna be negative but it truly sounds, looks and seems exhausting. Plus the "guilt" of being "normal". I hope the other children could be themselves too.
This mom's honesty, and strength is something I absolutely admire. We see you mama ❤️
Bless this momma. As a caregiver it's extremely hard period. But a child that's extremely active with a disability makes her job a 100 times harder. You are doing great momma!
I wish this family so much love.. they all seem so exhausted 😢
My heart breaks for Sophia. I could see the pain on her face while their mother explained the particular risks of her mono mono pregnancy.
So much of what the kids said sounded scripted. Great mom too, but this is objectively a pretty hopeless situation.
The girl probably needs to be in a residential care home. I admire this family’s tenacity and I understand that they want to give her as normal of a life as possible, but we humans can only take so much.
As someone who has a twin with CP, thank you for this!! It’s hard to be the “normal” twin.
I wish them all the strength they need. I cannot begin to imagine what it must be like to have such a tremendously demanding child. Hope she does as well she possibly can!
Great and calm dad who takes care of all of them.
The parents are really giving all
The siblings are so kind and understanding. It’s adorable really, clearly they have been raised right
I love the honesty. That’s so rare on social media. It’s so refreshing. Best of luck to them
This mom seriously made me feel so much better. My heart breaks for her bc I know exactly what she's dealing with mentally. The entire weight of the world is on her shoulders and she's just doing anything she can to push through it. I cant tell you how many people have told me that my ptsd is from my childhood when I know I didn't have any of my issues until 3years after my son was born and he was so out of control with his asd and self harming, hospital visits everyday, begging for help from any and everyone, just to have everyone look at me like I was failing when I had nothing left emotionally. Sending so much love to this mama!
Stay strong! You’ve come this far and damn, you’re a trooper for that. I cant imagine how difficult caring for a special needs child is but I wish you all the best
These siblings are absolutely fantastic. Everyone is, of course!
Seeing this family is so inspiring. I struggle with anxiety and am a new mom. I have a hard time letting my baby explore out of fear for her safety, hearing this strong mama say "Just live. Be free." Words I needed today. Thank you for sharing.
It's the 16:00 mark for me 😩 I feel this SO much! I have always run myself ragged trying to do all of the things. This mom (and family) is amazing and I am so grateful for this interview. Thanks for sharing!!
“I love that she’s my twin and I should be grateful” it sounds like something mommy or daddy has said over n over to drill into her head. Of course, she should love her sister and be grateful but it’s also ok to not always have positive feelings! Sometimes it’s ok to be sad, upset or even jealous of the extra attention her sister needs! She’s still just a little girl and I truly hope the parents are letting her express her organic feelings and helping her to work through them! This mom clearly loves her children and is taking such good care of her kids so I’m not saying anything mean here! They got a lot going on and no one can parent perfectly especially when there’s special needs involved! This family seems amazing❤️
This channel is the reason I keep going in life, every setback reminds me that there are bigger problems in the world and that I should be thankful for simple things like having all my senses and limbs and no mental issues, SBSK greatest channel ever, biggest inspiration in life
You can tell mum is really struggling , I guessed she had depression before she said it. Stay strong mumma you’re doing amazing ❤️
Thanks Mom for being honest about the mental health that comes along with the stress of caring for sick kids.
Keep your head up! She will get to a point where she can make a connection with what she needs to know. Once she understands a reward for sitting for a few minutes or something, she will get there. She may just not be ready for that. She may just need time to develop to that point.
We can tell that you love her and are doing what you know is best! If she can figure out how to get what she wants, she will figure out other stuff too!
For us , Music has been key.
@@maplecosy9429 Yes! In my family too. 5 of my kids have ADHD. My oldest daughter with ADHD is now going to major in Opera. Music was her life line!
@@awalkthroughtorah6897 Oh boy!
OMG this entire family is beyond awesome. Because the Mom is so open and honest, her children have learned to be totally open and honest with their feelings. What a love story!!!! I cannot begin to imagine what every single day of this Mother and Father looks like, and yet look at how much love there is! When her brother said that he hopes in the future she will have more friends, but hopes she won't forget him, it was so incredible! Just wanted to give such a big hug to them all!!!!
thank you to Alessia s mum for opening up about her experience as a caregiver (being pro active at first putting others hapiness first ) it enlightened me a lot .Wonderful family
Sophia is such a sweetheart. You can see her struggling with the difficulties, but she always tries to see the positive. The older brother and sister are sweethearts as well! ❤️
My 13-year-old son plays the same way with his three-year-old sister. She absolutely loves the roughhousing, lol. Especially when he has pillow fights with her. 🤗
I really appreciate the members of this family for being so honest about how it's not always so easy for them
I love how deeply loving and encouraging the entire family is!!! This is like the crack of heartwarming UA-cam content.
Seems very exhausting for the siblings as well as the mother. Can't even imagine.
This family is exhausted and needs rest and support urgently
That's so messed up that no one is willing to educate her. What use are teachers who will not teach those who need it most? I hope she is able to get the education she needs. Being able to express herself would help so much with the meltdowns and just her general quality of life. The whole family loves and cares for her, so I'm sad to see what they go through. I wish nothing but the best for this family.
I was going to write something very similar! This little girl really needs to be in school, even if she is in a one-on-one situation. Not only for her, but for her siblings and her parents. 20 minutes a week is not enough for a child to learn new skills. The parents need someone to represent them at an IEP meeting and get this child back in a classroom! It is vital for everybody!
My friend is a special ed teacher. The kids can be really rough. She's come home with bruises and bitemarks. Some days "teaching" is the last thing that happens. This is an extreme case. I feel bad for all of them. Those parents need regular breaks to refresh.
My friend is a special education teacher. Some of those kids can get really rough. She has come home with bruises and bite marks. Sometimes teaching is the last thing that happens. The parents do need regular breaks to refresh. This is an extreme case.
There is no structural support in place to help these teachers. Dealing w sped ed kids are extremely difficult sometimes bc these kids get frustrated easily (not their fault) ans hurt the teachers. You can't just get mad at the teachers without asking "what tools do you need in order to teacher?" This could mean additional staffing or special equipments, which are expensive!!!
There’s nothing the teachers can do until the parents work on behavior modification. She can learn; they just need to get her the right kind of help rather than blaming the school, insisting that’s just who she is, and saying they’ve already tried everything.
What an amazing, beautiful family. May God bless them abundantly, and let them be a beacon of encouragement and love to the world!
6:07 look at her digging her eye out that's so shocking
There must be an alternative to the stressful situation of this poor family. I worry how she will be managed when she's adult sized.
I assume that she'll be placed in some sort of group home when she's an adult.
The strength in Mom is palpable. What an awesome family!
¡Qué hermosa familia! Muchas bendiciones.
De nueva cuenta, un vídeo ejemplar. Con cuanta sinceridad hablan los padres.¡Gracias Chris por tu trabajo tan importante!
Wow, I have never heard of some Alessia's diagnosis, so informative. Thanks to you and the family, for sharing Alessia's story.
Would love an update on this beautiful, strong family in the future! They are so genuine and lovely, really refreshing to hear their experiences. I will keep them in my prayers.
My God, help that twin sister Sophia! She’s not seen by her parents! She’s depressed for sure!!
All my respect to this family. God bless them all. This reminds me to never complain. Thank you for posting.
As a special needs mum this resonates with me. Depression, off the scale anxiety, PTSD and a huge amount of guilt I don't think I will ever get past. My body let my baby down. I hope the family as a whole gets the help they need, respite would benefit them all hugely.
I feel so bad for this mom! I can't imagine having a kid that is that wild and energetic and there is just nothing you can do. 😢
Thank you so much for sharing this family’s story. The parents and all of the children are so loving and I really appreciated the transparency of what life looks like caring for a child with a disability. Sending my love!
My only judgement of this mom is that she is amazing! I’m in awe of this family.❤️
She is! Beautiful lady inside and out.
I am heartfully in awe at what wonderful siblings your daughter has. They love her unreservedly. You have a family of great examples to learn from.
As a teacher, is so sad to hear that the school rejected her. The society has to learn and adapt, because every kid is different. We have to learn how to teach those singularities. Send lots of love from Brasil
Sleep is so important … it affects everything so I will keep y’all in my prayers .. you’re family is so lovely and so supportive of one another you’re all doing an excellent job ❣️❣️
I appreciate this family so much for sharing not only the good parts but the struggles. Beautiful family!
❣
What an amazing family you are. You can see the love and patience there is. I pray one day soon they find a cure to help that precious little girl x
The sweetest children! How lucky is Alessia for having all those amazing siblings and how lucky are them for having amazing Alessia!
Why exactly are they lucky to have Alessia? I don’t see it this way. Quite the very opposite.
@@nadiafedorova3438 all of her siblings expressed how much they like her and how important is for them to have Alessia in her life. Also, this is not a video for you to express your negativity. If you don't have anything nice to say, just don't say it, because here is not the place for it.
@@AmandaScacabarrozzi yep. I actually agree with the second part of your message. My bad.
This is an awesome family. I wish I lived nearby so I could give the parents a break. Alessia's three siblings are growing up to be wonderful human beings.
Thank you again for this platform Steve. These families need to be heard. They love their daughter so much but it’s hard. No one can imagine unless they are in the situation themselves but it’s important we at least attempt to empathize!!!!!!!
I saw a video of Steph and Alessia to promote Steph's book and to watch Steph stand back and watch Alessia ride on her scooter outside, feeling the wind in her hair and smiling was AMAZING!! Alessia can do so much but this family needs some sleep!! Melatonin?
What an incredibly sweet brother
What a wonderful sibling group :) and superwoman mamma and caring father
I’m so impressed with all of the siblings communication skills and how they articulate their emotions! I wonder if it comes naturally to them or if they’ve been taught
Oh my gosh, this family is so beautiful! I love their honesty and energy. ❤
I've worked in special education (and I'm a teacher now) and I'm completely floored (but not shocked) by what those teachers said. It's a sad reality that people don't understand how to work with moderate/severe disabilities. How could this child sit in an activity chair and do academics? They have to meet her where she's at, and academics isn't it. If they cared they would want to make it work for her. I feel bad she isn't able to go to school an experience a different environment.
Beautiful Video as always !♡. Guys if you remember the story of Luis and Lexie , Lexie has been having very bad health issues lately and needs your support on the fundraiser for Luis's caregiving as she is the only provider,mom of clover, student and caregiver. Please help them on their channel The Accessible Van Life❤❤
This is such a refreshing interview. It's nice to see parents actually say how hard these types of situations are and seem upset about an upsetting situation.
Refreshing..are you seeing the same interview?
@@judyivie4181 Have you seen all the other interviews where the parents are gritting their teeth while saying what a blessing their out-of-control, non-functional child is? The mom seems exhausted and pissed here, which is honest and I find honesty refreshing.
her brother is an angel 🥹
My priority like this Mother and Father was also to keep Mom loved, supported, safe, valued, sociable, well, and happy.
I can't believe the video of this family was presented to me through auto-play on UA-cam. Our daughter (Mireya), also with Rhombencephalosynapsis, was just interviewed by Chris Ulmer (SBSK) with our video published last Thursday. My heart is so burdened for mom & dad: their struggle to live day-to-day has been crushing and is certainly overwhelming. I want to tell them that they look WELL. I can't imagine the encounters that they have had as they have had numerous and as the mother demonstrated are found everywhere on Alessia. So many of their inferences hit home for me and what my wife and my family have experienced in our life with our daughter. I could not imagine having twins with one of them having the profound level of disabilities like that of Alessia. The dresses for the twins were beautiful! Alessia is beautiful...BEAUTIFUL! Alessias twin sister is as sweet as anything there is. Alessia's older sister has a heart of gold. Alessia's older brother is so intelligent and very self aware; he is going to be a special man one day. I hope for everything for this dear family; that they just keep going, putting one foot in front of the other and rely deeply on one another for their strength...they have a special bond and they are a very special family.
Omg!!!! Are you guys in the RES group? I can't believe Chris interviewed two fanilies with RES!!! Omg i want to talk to you guys so bad!!!!
I'm always hesitant to click on your videos every time you post because I think it's going to make me sad and it sometimes does but just the amount of love that everyone has for one another in these families makes me smile! So thank you!!
Hope this family can get respite care. Looks like they really need it
Lil kiddo needs a safe swing to use inside! She's definitely in need of a lot of sensory input! Big love to this family for all working so hard to help her move around and keep her safe ❤️
The siblings are so sweet and helpful. Great interview. ❤❤❤❤ strength and energy and love to this family.
..."I hope she doesn't forget about me" what a WONDERFUL BIG BROTHER !! 🌻
Hi Alessia! It's so nice to meet you and your family. Your mother is obviously attentive of you and all your siblings. I can tell because you have turned out lovely and full of energy. And your siblings have turned out to have their hearts full of love.
I would like to raise your twin sister Sophia on a special frame in that love. She is clearly an intelligent girl and a soul wise beyond her years. I think like all twins you share a bond and she gets you.
Thanks for helping us all get you.
Lots of love from Finland! xx
What a story! I also have Chiari malformation 1.5 and syringomyelia which I wasn’t symptomatic until I just turned 38! Stay strong little girl 🥰
Such beautiful children, kind and intelligent! Parents are doing such a good job! Lots of love from Sweden ❤️❤️❤️
It’s sweet how they describe their sister and their relationship with her.
The most important thing is you have time for yourself. I wish u the best
its nice they arent sugarcoating reality; life is difficult, more so when it isnt the 'norm'. theyre struggling but trying their best.
Her sister is trying so hard to be sweet and respectful and not hurtful. I love how each member said something genuine and they all obviously love her and I can't imagine how difficult life has been for her parents and the people that love her. Thank you so much for asking about the mental health issues that have happened as a result of having a daughter with this many disabilities. I hope it didn't alarm her mom. She should feel heard and seen. I know it's hard for me with depression and anxiety with an abled child.
I just want to hug her mom. I'm so sorry education system folks are jerks. This family is awesome I wish them so much love and light And strength 💗💗💗
I got caregiver burnout with my stepdad after he got deleeium and early onset Alzheimer's. I was positive and gung ho and on top of everything, and then when he was a little better and manageable then I plateaued and got so drained from the appointments and I just dropped the ball. It's very real.
It's nice to see all these working parts of this beautiful human life
Surely the school system has a responsibility to give her an education, whatever that looks like, if that education isn’t currently available then look at ways to provide something. There are children whose behaviour is difficult who are still able to attend school and it may not be the typical education we think of but it’s more than 20 minutes once a week at her home.
Surely the education department have a legal obligation to provide her a service??
I completely agree!!
Unfortunately public schools barely provide what's needed for an a-typical child or a child with a well known, well documented, easily treated disability.
Is she home schooled?
What school system could afford one on one teachers?
@@laurajercha9587 it’s generally the teacher who supervises, alongside other therapists/doctors, and the work is done by a well trained teaching assistant.
I have seen some of this video and I appreciate that this channel is here
What a group of beautiful children. They seem very smart and knowledgeable about their sister.
Blessings to all of them 🙏.
To the family, you can find a vibration board off Amazon for 100 USD give or take. She can stand or sit on it while it vibrates. I think this will make her feel calm, turn down that extreme tension and provide stable data to her brain.
"...seeing her so close to death. So, I'm like just live and be free."
My mother employed this parenting style with my disabled brother. The lack of structure and discipline has diminished his quality of life tremendously. He is now almost 30 years of age and his aides continue to quit routinely. Like this family, my father allowed my mother to run the show.
Thank you. I learned so much from Alesia’s family! This channel changes people. I love it
As a mom of twins I can’t imagine how hard this is. I can’t imagine watching one twin thrive while the other is disabled. I can’t imagine the amount of stress they live with. Sending them so much love.
That little girl who spoke 1at had been seriously coached in what to say. She also seems so sad at her deal in life.
God bless this family and give them strength and refreshment
Agradezco la sinceridad de la madre, me parece de una inmensa generosidad. ⚘
Honestly, (this may sound harsh) I think the family could benefit greatly from putting Alessia in a home. It would give everyone the break they seem to need. Especially if she still acts this way when she's older and bigger.
This family deserves mad respect. You know they're doing their very best to take care of their daughter and sister. Sometimes you have to adapt to the needs of a child.