Life with Norrie Disease
Life with Norrie Disease
  • Видео 158
  • Просмотров 363 316
DISNEY WORLD SPECIAL NEEDS - BLIND CHILD
Join us as we relive the magic of our first family vacation to @DisneyParks
Jensen is blind, nonverbal and developmentally delayed. Taking a big vacation is scary, but Disney made it worth it!
Просмотров: 261

Видео

1st VACATION as a SPECIAL NEEDS FAMILY
Просмотров 294День назад
It's scary to get out of your comfort zone with your new baby, but it's even scarier to get out of that routine as a special needs parent. I was SO nervous for this vacation. However, we left with my heart feeling so full. In the end it was a lesson learned that I can't let my insecurities take away from the opportunity for Jensen to show me what he is capable of in a different environment!
SPECIAL NEEDS SAFE ROOM
Просмотров 1 тыс.14 дней назад
Jensen is outgrowing his "tent bed." We decided to transition him to our smaller bedroom in the house. We would allow him to have full access in a safe environment. This was the best decision we could have made!
WE DISAPPEARED. But why? Special Needs Family.
Просмотров 37621 день назад
Oh my goodness! It feels so good to be back! The past year was full of many adventures, some of which I forget to mention. BUT our absolute favorite adventure was the most recent! I can not wait to make a video covering Jensen's first trip to @disneyparks
WI DELLS with BLIND TODDLER
Просмотров 7538 месяцев назад
For our wedding anniversary we decided to take Jensen for a night stay at the Wisconsin Dells indoor water park. Jensen had a pretty good cold going, was fighting constipation and had a rough night. However, I couldn't be happier that we made the decision to take him because we had a blast! Just made us realize that we can get out of our comfort zone and try new things!
RENOVATION TOUR w/o tending to a toddler!
Просмотров 3149 месяцев назад
Our prior video showcased our house renovations featuring Jensen. However, balancing that and a toddler was difficult. My husband did a fabulous job on the house so I wanted to make sure he got the credit with a full video dedicated to before and afters. Thanks friends! Prior video: ruclips.net/video/v_aKpru4KN4/видео.html
VITALITY of our AREA EDUCATION AGENCY
Просмотров 36411 месяцев назад
This video was originally created in the spring of 2021 for a private audience for a routine board meeting regarding our local Area Education Agency (AEA). Little would I know that I would have to use it publicly years later in order to raise support and awareness to our government on how vital this agency is to our community. Unfortunately, there is a potential bill to be passed which will dir...
BLIND TODDLER and HOUSE RENOVATIONS.
Просмотров 1,2 тыс.Год назад
BLIND TODDLER and HOUSE RENOVATIONS.
Blind Toddler explores botanical garden with belt cane!
Просмотров 690Год назад
Blind Toddler explores botanical garden with belt cane!
BLIND TODDLER MORNING ROUTINE. School day.
Просмотров 2,1 тыс.Год назад
BLIND TODDLER MORNING ROUTINE. School day.
TONSIL & ADENOID REMOVAL w/ BLIND TODDLER.
Просмотров 652Год назад
TONSIL & ADENOID REMOVAL w/ BLIND TODDLER.
COMMUNICATION BOARD, SPOON FEEDING: Special Needs, Blind Toddler.
Просмотров 908Год назад
COMMUNICATION BOARD, SPOON FEEDING: Special Needs, Blind Toddler.
BLIND TODDLER. Speech, Belt Cane & More.
Просмотров 859Год назад
BLIND TODDLER. Speech, Belt Cane & More.
We've Missed You! NORRIE DISEASE
Просмотров 934Год назад
We've Missed You! NORRIE DISEASE
BIO of a BLIND CHILD. JJ introducing himself to his teachers.
Просмотров 1,2 тыс.Год назад
BIO of a BLIND CHILD. JJ introducing himself to his teachers.
BLIND TODDLER BEDTIME ROUTINE. Special Needs Parenting
Просмотров 3,3 тыс.Год назад
BLIND TODDLER BEDTIME ROUTINE. Special Needs Parenting
HOSPITAL STAY with NONVERBAL, BLIND CHILD.
Просмотров 3 тыс.Год назад
HOSPITAL STAY with NONVERBAL, BLIND CHILD.
SPECIAL NEEDS PARENT Q&A. Blind Toddler. Part 2!
Просмотров 1,5 тыс.Год назад
SPECIAL NEEDS PARENT Q&A. Blind Toddler. Part 2!
BLIND BABY & the UNKOWN. Norrie Disease
Просмотров 2,5 тыс.Год назад
BLIND BABY & the UNKOWN. Norrie Disease
BLIND BABY Q&A - NORRIE DISEASE. Live, learn, educate.
Просмотров 1,2 тыс.Год назад
BLIND BABY Q&A - NORRIE DISEASE. Live, learn, educate.
ER VISIT & FITNESS TRIAL / ERROR. Balancing health & special needs, blind toddler parenting!
Просмотров 1,6 тыс.Год назад
ER VISIT & FITNESS TRIAL / ERROR. Balancing health & special needs, blind toddler parenting!
EYE PROSTHETIC, GLASS EYE, FAKE EYE. How it's made & how we use the prosthesis w/ our BLIND TODDLER
Просмотров 6 тыс.Год назад
EYE PROSTHETIC, GLASS EYE, FAKE EYE. How it's made & how we use the prosthesis w/ our BLIND TODDLER
MULTIPLE APPOINTMENTS WITH SICK, NONVERBAL CHILD. Why we were missing on Youtube. Special Needs.
Просмотров 1,7 тыс.Год назад
MULTIPLE APPOINTMENTS WITH SICK, NONVERBAL CHILD. Why we were missing on RUclips. Special Needs.
SPECTRUM OF NORRIE DISEASE. Similarities and difference between two blind toddlers with same disease
Просмотров 3,6 тыс.2 года назад
SPECTRUM OF NORRIE DISEASE. Similarities and difference between two blind toddlers with same disease
BLIND TODDLER JJ EXPLORES THE KITCHEN. Norrie Disease. Special Needs
Просмотров 7592 года назад
BLIND TODDLER JJ EXPLORES THE KITCHEN. Norrie Disease. Special Needs
NORRIE DISEASE. We've been missing on Youtube and TikTok. But why?
Просмотров 1,9 тыс.2 года назад
NORRIE DISEASE. We've been missing on RUclips and TikTok. But why?
BLIND TODDLER. JJ CELEBRATES HIS 2nd BIRTHDAY. Norrie Disease. Special Needs Parenting.
Просмотров 2,8 тыс.2 года назад
BLIND TODDLER. JJ CELEBRATES HIS 2nd BIRTHDAY. Norrie Disease. Special Needs Parenting.
BLIND TODDLER LEARNS HOW TO STAND WHILE IN THE POOL. Pediatric physical therapy.
Просмотров 9352 года назад
BLIND TODDLER LEARNS HOW TO STAND WHILE IN THE POOL. Pediatric physical therapy.
BLIND TODDLER JJ OPENS MUSIC BIRTHDAY CARD
Просмотров 6432 года назад
BLIND TODDLER JJ OPENS MUSIC BIRTHDAY CARD
ADVOCATING FOR SPECIAL NEEDS CHILD. What to do if the poop cocktail doesn't work. Blind toddler.
Просмотров 1,2 тыс.2 года назад
ADVOCATING FOR SPECIAL NEEDS CHILD. What to do if the poop cocktail doesn't work. Blind toddler.

Комментарии

  • @debbiemendoza1944
    @debbiemendoza1944 3 дня назад

    I'm so happy to see that your family was able to enjoy this trip!❤

  • @themondaycorner
    @themondaycorner 3 дня назад

    I’m so glad to hear you had a great time at Disney! It’s amazing to see how accommodating they are, especially from the perspective of an SEN family. I hope my son gets to experience it someday, but the flight feels a bit too long for us at the moment. My son is nearly 3 and a lot like Jenson-he has global developmental delay, is visually impaired, non-verbal, and is autistic. He’s also in the bitey, scratchy, pinchy stage right now. I really enjoy your content because I can relate to so much of what you share! He's getting a Toniebox for Christmas, you should seek a commission.

  • @kimtongo3533
    @kimtongo3533 3 дня назад

    Thanks for sharing!!! I am so glad Jenson had a great time at Disney World!!! That was fun to watch!!! Look forward to your next video!!!!🙏🥰☀️🎄☀️🥰🙏

  • @dianacrowell58
    @dianacrowell58 3 дня назад

    My heart feels so happy for the experience that your family had at DisneyWorld. We live a couple hours south of Orlando and have had so many wonderful memories there with our children and now our grandchildren. For your next trip look into the Cabins at Fort Wilderness. That is the most requested place to stay for my grandchildren. You have your own private cabin with full kitchen and so many wonderful activities on that property. We have stayed there multiple times without having the need to spent money on the parks and free transportation to other resorts. God bless you all, Merry Christmas and a blessed New Year❤️

  • @jenniferjones4063
    @jenniferjones4063 5 дней назад

    Replay

  • @jenisadon
    @jenisadon 5 дней назад

    Please keep these videos going. They are great. I’m a special needs mom & your videos are such an inspiration for me 😊

  • @stacypogue3183
    @stacypogue3183 7 дней назад

    Jensen has changed so much and is walking really well

  • @kimtongo3533
    @kimtongo3533 10 дней назад

    Thanks for sharing!!!! Loved the video!!!!! As always looking forward to the next one!!!!🙏🎄🥰🎄🙏

  • @katelynbruner8254
    @katelynbruner8254 15 дней назад

    So fun! The room looks amazing!

  • @deepalisharma1506
    @deepalisharma1506 16 дней назад

    Wow! Jensen is growing up beautifully and good on you to get some time for yourselves :)

  • @deepalisharma1506
    @deepalisharma1506 16 дней назад

    Amazing! Well done

  • @patriciaharlen4823
    @patriciaharlen4823 16 дней назад

    Happy boy❤❤❤

  • @IzabellaCrespo-vl6mg
    @IzabellaCrespo-vl6mg 16 дней назад

    Awesome! Congrats little man!

  • @مؤمنه-ط4م
    @مؤمنه-ط4م 17 дней назад

    Does he speak

  • @Genie519
    @Genie519 17 дней назад

    It’s so great! Bravo!

  • @Genie519
    @Genie519 17 дней назад

    So great! You guys are making such a great space for him to explore independently ☺️. Such a big step but a good one!

  • @sheilamesick5964
    @sheilamesick5964 17 дней назад

    I like viewing the many creative ways you prepare Jensen’s space for him to explore and grow up in, every family member takes part to contribute. He’s a sweet little boy!

  • @dianacrowell58
    @dianacrowell58 17 дней назад

    What a great room for that handsome boy❤ He was blessed to have such wonderful parents.

  • @Gloria-qv2sc
    @Gloria-qv2sc 17 дней назад

    Such great ideas, it’s perfect for him! Love your videos, Jenson is a great kid. You are all blessed❤️

  • @kimtongo3533
    @kimtongo3533 18 дней назад

    Amazing, Amazing, and Amazing!!! You and your husband did an awesome job on Jenson’s room!! It looks so cute!!! I know he loves it!!! Thanks for sharing!!!! Look forward to your next video!!!!🙏☀️🥰🙏☀️🥰🙏

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 17 дней назад

      He absolutely loves his room! We are so happy with the result all around!

  • @jemmabrown1988
    @jemmabrown1988 18 дней назад

    Looks awesome

  • @مؤمنه-ط4م
    @مؤمنه-ط4م 18 дней назад

    أخيرا عدتم نحن فرحين بعودتكم🎉🎉🎉❤

  • @مؤمنه-ط4م
    @مؤمنه-ط4م 18 дней назад

    اشتقت لرأيته❤❤❤❤❤اتمنى له التوفيق❤

  • @milahhipsel1961
    @milahhipsel1961 19 дней назад

    Tonight, I came across a video of yours and I started watching other ones of your journey with Jensen. Thank you so much for posting all the things that come with having a special needs child. My little one is 9 months old and spent 2 months in the NICU. He currently has all the therapies, is tube fed, sees all the specialists, is delayed, has huge spit ups with horrible reflux, and has had a hard time gaining weight since coming home (stayed in the 1-2% percentile). I thought finally having him home would make things easier on me emotionally because leaving the NICU felt like we won a war. But coming home there have been more battles to fight and it’s been overwhelming recently. The video on your depression was played over and over and over because it was so soothing to me to have someone else express into words what I have been feeling. I’m currently mourning and choosing to distance myself from other families and friends with kids because of how different my experience has been. It is so hard but I realized that I might just be in the thick of hard right now. Jensen is a handsome boy and he has come a long way! I’m so happy to see how far it looks like you’ve also come. You work so hard and you all make a beautiful family ❤️much love sent your way. Thanks for being such a beautiful light to other moms 🥹 Happy Thanksgiving 🦃🍁

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 18 дней назад

      Oh my goodness mama! So beautifully written and means the world to me. This is my "why" I decided to document EVERYTHING, even the hard things. Our journey felt so isolating, I never want anyone to feel alone. There is SO much to learn when your journey isn't the one you imaged. That first year is the absolute hardest. You are still learning about your triggers while fighting the unknown of future "issues" for your peanut. I plan on another video covering mental health and where I am now. I think this is SO important. Eventually, I'll have one with how a medically complex child can affect marriage too. Many many hugs to you and your kind words. They truly mean the world to me! You are obviously doing all the right things in caring for your little and helping educate yourself, distancing yourself from triggers and understanding that you are never alone in this journey. Very happy first Thanksgiving to you and your little warrior!

  • @dianacrowell58
    @dianacrowell58 20 дней назад

    You’re back ❤️

  • @qwerty-zo8ph
    @qwerty-zo8ph 21 день назад

    ❤❤❤

  • @patriciaharlen4823
    @patriciaharlen4823 21 день назад

    I'm crying happy tears. It's so beautiful to see this precious little human experience the world. He's wonderful ❤️

  • @shaq2jack
    @shaq2jack 21 день назад

    He's gotten so big!

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 18 дней назад

      it is amazing to look back and see how far he's come / how big he is now!

  • @kimtongo3533
    @kimtongo3533 22 дня назад

    Amazing!!!! Jenson has come a long way!!! I am so happy he is doing well!!!!Have a wonderful and blessed Thanksgiving!!!!!🙏☀️🙏

  • @AutismandTouretteSyndrome
    @AutismandTouretteSyndrome 22 дня назад

    OMG Jensen has grown so much!! Welcome back!!

  • @patriciaharlen4823
    @patriciaharlen4823 23 дня назад

    Looks like you guys are doing wonderful! Thank you so much for the update. He is an amazingly beautiful boy!

  • @Brenda-e1m
    @Brenda-e1m 23 дня назад

    Welcome back! I'm so glad❤. Jensen is one handsome dude. Look forward to more videos. Brenda From Maine

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 22 дня назад

      Amazing! Thank you so much for the love and support! We are so excited to be back!

  • @TimStern-w1g
    @TimStern-w1g 23 дня назад

    Wow! Thanks for the awesome update!

  • @patriciaharlen4823
    @patriciaharlen4823 24 дня назад

    I've missed Jenson sooooo much! It looks like he's doing awesome ❤

  • @MM-yh2mi
    @MM-yh2mi 24 дня назад

    So good to hear an update ❤

  • @sheilamesick5964
    @sheilamesick5964 24 дня назад

    Love it when you mentioned Disney he clapped his hands.

  • @Genie519
    @Genie519 24 дня назад

    Thanks for the update! He is so big! I’m glad school is working out🙂.

  • @themondaycorner
    @themondaycorner 24 дня назад

    🙂He's almost doubled in size! It's so nice to hear an update and know that you're all doing great. 👍

    • @kimtongo3533
      @kimtongo3533 24 дня назад

      Perfectly said!!! So happy all is going great with Jenson and your family!!!!🙏☀️🙏

  • @IzabellaCrespo-vl6mg
    @IzabellaCrespo-vl6mg 25 дней назад

    So special! Thanks for sharing 🫶🏼

  • @debbiemendoza1944
    @debbiemendoza1944 26 дней назад

  • @stephandedeaux5574
    @stephandedeaux5574 27 дней назад

    Not being rude but very curious will little man ever be able to see is there any research done on this disease ??

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 27 дней назад

      Questions are welcomed. He won't ever be able to see. His form of blindness can not be reversed. He had multiple surgeries as a newborn but those were unsuccessful. Even if they were successful he probably wouldn't have kept his small amount of vision for very long. Since it is a rare disease there is not a lot of research on it. Thanks for asking!

  • @TheGoosey11315
    @TheGoosey11315 28 дней назад

    Pumpkin patches are the best! Its so nostalgic.🎃

  • @TheGoosey11315
    @TheGoosey11315 28 дней назад

    How come he would gag to the corn? I hope thats not a rude question.

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 28 дней назад

      Not rude at all! Questions are welcomed. Not sure if I have a full answer though 😆 A lot of blind and visually impaired people can have tactile or texture issues, especially when it comes to food. Something just gives them that "ick" feeling. We are fortunate, the only thing JJ typically reacts this way is with dried corn, beans and lettuce. Great question

    • @James-yc5qe
      @James-yc5qe 28 дней назад

      When you shell corn like that, there's always dust That flies up in the air when you move it around

    • @TheGoosey11315
      @TheGoosey11315 27 дней назад

      @@LifewithNorrieDisease Thanks!

  • @chanelwilson4249
    @chanelwilson4249 28 дней назад

    I’m really happy to see this and progress he has made. 😊🥰

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 28 дней назад

      awe, thank you so much. I was just thinking of you the other day. Hope you and your little are doing well!

  • @dianacrowell58
    @dianacrowell58 28 дней назад

    Just checking up on you and praying that all is well.

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 28 дней назад

      So so sweet! We are good. Currently have 3 videos just about ready to be put out! Be on the lookout!

  • @TatumIsntHere
    @TatumIsntHere 28 дней назад

    Don't make that baby gag just for a video

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 28 дней назад

      You caught me. Doing it for the views🙄😒… When actually I filmed every feature of the pumpkin patch to capture our experience. Just because he doesn’t like dried corn one year doesn’t mean he won’t like it the next year. Thanks for your concern though.

    • @KallieFales
      @KallieFales 28 дней назад

      mind your own business! not everything is for views these days. she wanted to see if he would still gag the next year to catch memories not ur business!

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 28 дней назад

      @@KallieFales right! The reason I take part in social media is to spread awareness and help people normalize special needs. I actually had zero expectation on how my kiddo would respond to the corn. I was just enjoying our family time. Sad that it feels like you have to justify yourself for others. Thanks for having our back 💪🏼

    • @TatumIsntHere
      @TatumIsntHere 25 дней назад

      @@LifewithNorrieDisease "gets him every time" let's me know that YOU KNOW your baby doesn't like it. Farming your disabled kid for views isn't right. You're welcome for my concern since nobody else seems to care 💕

    • @TatumIsntHere
      @TatumIsntHere 25 дней назад

      @@KallieFales it's my business when it's posted publicly for the world to see. Why post if you don't want people to comment. They're hoping to make a pretty penny off of their child I'm just helping that along lmao

  • @pinklickpony7162
    @pinklickpony7162 29 дней назад

    Hi JJ looking handsome. X

    • @LifewithNorrieDisease
      @LifewithNorrieDisease 29 дней назад

      Thank you! I've done a lot of growing and can't wait for mom to stop being lazy and post more videos. Big squeezes (hugs). - Jensen

  • @Sjmsnsns-cl5ef
    @Sjmsnsns-cl5ef 29 дней назад

    Aww, he is so cuteee

  • @Jayden-u7f6u
    @Jayden-u7f6u 29 дней назад

    😮

  • @Jayden-u7f6u
    @Jayden-u7f6u 29 дней назад

    What the world

    • @eden5260
      @eden5260 29 дней назад

      He is blind , she tries to make him know to use this device that should help him walk and avoid obstacles