Our Special Lives

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@anitralittlejohn8387 Ай бұрын

I am in this situation and haven't had adequate nursing since my daughter came home from the NICU and spent 384 days in the NICU

@shabrethajennings7291 5 ай бұрын

People date within your lane if you have special needs kid date another person with a special needs kid. Please be realistic most people are not going to want to deal with that especially if they have no experience with special needs individuals. Test people out before you give you energy and time to some childless person who might decide to bail on you. I f you cannot fathom dating someone who has special needs kid like yourself, please make peace with being single. Too many single parents act entitle to get a childfree person you will have a lot if issues. Not saying a childfree couldn't not love you and your child unconditionally, but you need to be realistic about the situation. Don't allow someone to waste your time that you barley have in the first place let alone look at your kid as burden. Their are dating apps for parents with special needs try those but don't settle for less, again date on your level. Btw to these guys in the comments please end the relationships with these women, it's ok if this life isn't for you but at least keep it real and move on instead of trying to save face.

@Age_Of_Aquarius84 4 ай бұрын

Why don't you mind your own business and let people date whoever tf they choose. 🤡

@HeatherMarsh-b9l 6 ай бұрын

How can she get high and function omg

@jodymiller1 6 ай бұрын

What happens when your parent are the ones with special needs and you are now confused because you realize that you haven’t been raised right

@remuspierre7573 7 ай бұрын

Good Advice

@lucyroth2671 10 ай бұрын

I did not want a parade of men in my son's life. After his father, my now ex husband abandoned us, I tried dating one person for 7 years. He could not handle my son's issues either. Now my son is 28 years old plus, and I am going to be 58. I don't really look my age so at least I have that going for me, but it's really slim Pickens out there even if you don't have a child with special needs or an adult child with special needs as I now do. I have given up on dating apps. I have been alone without a partner for 10 years, and the longer I stay alone the more I get used to it.

@AgapeLove878 11 ай бұрын

Im in Nebraska and would love to be a part of these groups of parent caregivers so i can collect some information on what the needs and gaps are in private duty so that I can be sure to offer elevated services to clients.

@AgapeLove878 11 ай бұрын

This is so good. I have been a nurse in the field of developmental disabilities for 20 years. I am going private duty for many of the reasons you speak of. Its good to hear all of this as i plan yo create something different.

@mookeystinks190 Жыл бұрын

I am a single mom with aspergers and the love of my life has two kids, one with severe autism, some major eating issues etc. but he is the sweetest kid. Right now he is getting in trouble at school and I think my bf is worried this kind of thing will scare me away. It won’t. I want to be a part of his family more but there’s a distance my bf puts there I think to keep space out of either fear or protection. How do I let him know I can handle it, I want to be there for him and the kids. Also I know I have anxious attachment style and he is an avoidant.

@sandykoval3477 Жыл бұрын

Thanks, I use a shoe organizer as well, I like the idea of screwing it in the door.

@indazone1 Жыл бұрын

I went in with an open mind and tried patience. But my girlfriend’s severely autistic adult is way too aggressive and angry.

@m.legato3698 Жыл бұрын

Thank You so much for these videos.

@OurSpecialLives Жыл бұрын

Thank you for watching and I’m glad they were helpful!

@decoego Жыл бұрын

This was so incredibly helpful! Thank you for producing this!

@OurSpecialLives Жыл бұрын

So glad it was helpful- thanks for watching!!

@DevashriMukherji09 Жыл бұрын

This video was posted about a year back nobody commented yet! Anyways I am the first one to comment here! How would the capsule taste after dissolved in water? Also will all the content ( the granulated ones) get completely dissolved? And how to make it taste good for kids?

@SpecialNeedsAcademy Жыл бұрын

Thank you for putting this out there. I was thinking about doing something along this line after a conversation I had with a friend who found her love of her life. Great topic and I will be sure to link to this video when I cover this topic. Glad I found your channel

@OurSpecialLives Жыл бұрын

Thank you- I thought Kari did a great job helping reframe some of the common thoughts around dating with a SN child. Thanks for your kind words. I will check out your channel!

@SpecialNeedsAcademy Жыл бұрын

@@OurSpecialLives Great. Just note that I am in the process of pivoting my channel to be more broad whole of life planning as opposed to focusing on the legal and financial needs. There is so much more to planning than special needs trusts and able accounts. Excited about that change as I navigate my own journey

@OurSpecialLives Жыл бұрын

@@SpecialNeedsAcademy that’s great! Would you be interested in doing a video on our channel about your channel and possibly your top tips for planning? We’ve done a couple videos on it but you are such and expert and helpful on the parent perspective side. My email is [email protected] if you are interested. Best of luck with your new direction!

@bunnybunny1908 Жыл бұрын

My adult disabled daughter is needed a feeding tube and I’m so torn and conflicted

@OurSpecialLives Жыл бұрын

I’m happy to have a call with you to share our experience and what it’s like if that would be helpful. Just let me know!

@bunnybunny1908 Жыл бұрын

@@OurSpecialLives I would really appreciate that. I really don’t have anyone to talk to that would understand. It’s such a scary walk to walk alone.

@OurSpecialLives Жыл бұрын

@@bunnybunny1908 email me at [email protected]

@caesar349 2 жыл бұрын

Grew up with mentally disabled sibling. I cannot express how stressful and anxiety inducing it was. I have guilt for many hidden feelings.

@OurSpecialLives 2 жыл бұрын

Often we are taught that we “should” feel a certain way- loving, compassionate- but it’s very normal to feel other emotions- anger, frustration, embarrassment, anxiety. And when we do, we feel like something is wrong with us. That only makes the situation more painful. Also, many times other family members are feeling overwhelmed and don’t know how to address the emotional needs of a sibling. I’m sorry that you went through that difficult time. I hope you can find a way to let go of the thought that you should have had different emotions and understand that you were probably doing the best you could under the circumstances. As the mother of a special needs child, I experience feeling good emotions part of the time and then feeling hard or difficult emotions part of the time. My belief is that feeling difficult emotions can help us grow as people, if we let them, so we don’t need to be scared or ashamed of having those feelings.

@diannedotson6900 2 жыл бұрын

Wonderful. What's another podcast on this?

@OurSpecialLives 2 жыл бұрын

Hi Dianne- try The Life Coach School podcast by Brooke Castillo. She’s the founder of the coaching school that Kari Anne and I attended. Her podcast is amazing! Thanks for watching!

@greeneyes2363 2 жыл бұрын

Why you never show your child?

@OurSpecialLives 2 жыл бұрын

Thank you for watching! He is in almost every thumbnail!

@greeneyes2363 2 жыл бұрын

Ok I thought he was older. I also have a child with special needs

@OurSpecialLives 2 жыл бұрын

My son is 12 now and many of the pictures are from when he was younger but some are more recent. Caring for a child with CP can be very challenging. I’m glad you are finding sources of support online!

@greeneyes2363 2 жыл бұрын

@@OurSpecialLives thank you My son CCHS he has a tracheostomy since he was 6 weeks old

@BBenn-qq1um 2 жыл бұрын

Thanks for putting this out.

@OurSpecialLives 2 жыл бұрын

Thank you for watching and glad it was helpful!

@hannahtownsley4913 2 жыл бұрын

This was such an inspiring video! It makes me believe I can as a special needs parent!

@OurSpecialLives 2 жыл бұрын

Hi Hannah- thank you for your comment! Yes, absolutely you can date as a special needs parent- the only thing that limits people are their thoughts about dating. Best of luck!

@ranahassan7477 2 жыл бұрын

I'm happy coming here today to appreciate the good work of #Drakhigbespellhome For saving my relationship I never believe there will Be a way To get my lover back .

@carter4247 2 жыл бұрын

Awesome! I am currently in the VCU msw program and have special needs children. Thank you for the info!

@OurSpecialLives 2 жыл бұрын

Thank you, Carter! Best of luck with the program! Let me know if there are any topics that it it would be helpful to cover!

@carter4247 2 жыл бұрын

Our Special Lives thank you so much and I will definitely let you know!

@onayrarodriguez5857 2 жыл бұрын

To much talking

@OurSpecialLives 2 жыл бұрын

Thank you for watching!

@meganashcraft7311 2 жыл бұрын

I really appreciate your videos. For about a year now I've been sharing your video about venting a g tube bc it saved me when I first got my GJ tube. Much love ❤️

@OurSpecialLives 2 жыл бұрын

Megan, thanks so much for this wonderful comment- I’m so glad the venting video is helping you and others…..If there are any other topics that would be helpful to cover, please let me know!

@fatimamohammad6358 3 жыл бұрын

subbed very informative channel for families with special need kids

@OurSpecialLives 3 жыл бұрын

Thank you very much! Please let me know if there are any other topics you’d like to see. You can email me at [email protected] if you have any ideas.

@heidievans7626 3 жыл бұрын

Hi Laura. I hope all is well with you and your family. This video was super helpful!!! Our son is getting ready to have a tracheostomy on the 19th and of course we have no idea what is ahead of us. I have spoken with several moms just to get an idea of what is to come. Of course everyone's situation is different but all feedback has been helpful. We are very nervous but know this is the best for him and just like everything we have been through in the last 21 years, we will adapt. Thank you for sharing your experiences.

@OurSpecialLives 3 жыл бұрын

Hi Heidi- I am wishing you all the best- feel free to drop me an email if having a conversation would be helpful- sounds like you’ve been doing a lot of research and that is awesome. You can definitely handle it- there’s a learning curve and you’ll figure it out. My email is [email protected]

@antuliolanderos2386 2 жыл бұрын

Yes, thank you Laura, Dec. 11, 2022. this is all new and scary to us, but with God's help we'll get trough this. and thank you for your tips.

@OurSpecialLives 2 жыл бұрын

@@antuliolanderos2386 you’re so welcome. Thank you for the kind words and let me know if anything comes up that I might be able to help with…..

@suitenailz4925 3 жыл бұрын

VERY INFORMATIVE!

@kimberlyleos9425 3 жыл бұрын

Is there a reason why no air is coming out? I’ve been trying to vent my daughter as usual & for the past 2 days nothing has come out.

@OurSpecialLives 3 жыл бұрын

When we are not getting any flow of food or air through the feeding extension, most of the time it is because there is mucus blocking the tube inside of the stomach. That’s when we insert the plunger into the syringe, insert the syringe into the extension, unclip the extension and pull back on the plunger until some contents come out. Sometimes we need to do this a couple of times. If I am pulling back some mucus, I throw it out. Also, is she laying flat and on her back when you are venting? If not, try that.

@bilkovamishka 3 жыл бұрын

Hi there, what is the thing called that takes out air continuously, you mentioned? When the child swallowing air constantly? Thank

@bilkovamishka 3 жыл бұрын

Amazing video by the way ♥️

@OurSpecialLives 3 жыл бұрын

@@bilkovamishka Thank you so much!! I am glad it is helpful. The continuous venting can be done with something called a farrell bag. They don't really work that well (in our experience) because the tube is too narrow, but if you want to try them, your pediatric supply company should be able to help. If your child swallows a lot of air, what might work better is to keep a syringe (without the plunger) on the feeding extension between meals. I don't know how much your child moves but you may be able to do this at least overnight. The other option is just to vent every 15-20 minutes or so. Best of luck!

@anniehoecherl 3 жыл бұрын

Great episode! Very helpful for all parents/ couples. Great job Ladies!

@OurSpecialLives 3 жыл бұрын

Thank you!

@cyrisha30 3 жыл бұрын

[email protected] I would like to know where I can get the miracle syringe

@MrsMoore001 3 жыл бұрын

Thank you so much this was very helpful. I especially liked the bottle demonstration on positioning. My son has had his G tube for only a week now.

@OurSpecialLives 3 жыл бұрын

I’m so glad it helped you! You might want to check out this one too! kzbin.info/www/bejne/n56Ue5aYjburnJo

@diannaswenson7553 3 жыл бұрын

We are getting ready to look into Guardianship. You really have great videos, thankful for this resource.

@diannaswenson7553 3 жыл бұрын

In pandemic era, have you had any concerns with several nurses?

@OurSpecialLives 3 жыл бұрын

Our nurses observed pretty strict masking, hand washing and other protocols during the pandemic. I was very impressed by how seriously they took those precautions. The pandemic made everything more difficult and this was no exception! Now that the nurses are vaccinated we have less concern although they are still masking and observing the same procedures.

@diannaswenson7553 3 жыл бұрын

How did your son show pain? Our son usually has a higher heart rate with it, but we are definitely having the overgrowth of gums, and my child has a trache and is nonverbal

@OurSpecialLives 3 жыл бұрын

Our son is also non verbal with a trach. He showed acute pain (when it was most intense) by crying but there were also periods of “fussiness” or restless sleeping accompanied by a higher heart rate. Some children also express pain through facial expressions, body stiffening. Does your son get a sedated scope every so often for his trach (to check for granulation tissue)? If so, that’s a great time to get dental films. If you suspect that your son could be having pain now I would talk to your dentist about options for getting dental films, including a sedated procedure. With the gum overgrowth there is nothing that can really be seen on an oral exam. Please let me know if you have other questions!

@OurSpecialLives 3 жыл бұрын

Also, one more thought. Dental pain often (not always) starts in the afternoon or evening and is much worse at night, so if you are seeing worsening in the evening, that could be a sign of dental issues.

@diannaswenson7553 3 жыл бұрын

@@OurSpecialLives I just found you all about two weeks ago! We had a really hard summer with some seizure activity and Tracheal Inominate Fistula, and we had several scopes then, but aren't due for a bit of time. Honestly though, my husband wonders about all the gums over the teeth, and I've been trying to find a dentist, we haven't seen one for five years! He hates the dentist office, for reasons you talked about. I need to get on the ball about this issue, we just lost our nurse of 13 years and are definitely trying to keep ourselves organized without her

@OurSpecialLives 3 жыл бұрын

I’m so sorry to hear that you’re in a rough time. I hope you find a new nurse soon. I did a video on nursing that could help a bit. One thing I didn’t talk about in the video was that the nighttime pain caused my son to be awake and restless which provokes seizures in him. For us there was a connection between the dental pain and increased seizure activity because it so effected his sleep. Best of luck navigating all of these issues. Where do you live?

@OurSpecialLives 3 жыл бұрын

One more thought! If you are looking for a dentist, you want one with hospital privileges. Not all dentists have privileges and they can’t do a sedated procedure at the hospital without it.

@OurSpecialLives 3 жыл бұрын

Kimberly- thanks so much for your feedback and I so appreciate you sharing this with anyone who might be helped! Please also let me know if there are any topics that you and your community would like me to cover in the future. All my best, Laura

@kimberlywyse 3 жыл бұрын

Thank you so much for sharing this video. I appreciate it so much. I haven't found any resources like this anywhere. I'm going to share it in my Down syndrome groups.

@toes124 3 жыл бұрын

First comment

@LiveForFreedom777 3 жыл бұрын

Hi great video. 🙏 thanks

@LiveForFreedom777 3 жыл бұрын

And if it’s mucus? Thanks. My baby’s been chunky ish on and off for a week.. thought maybe it was the new formula... do you put the mucus back in? Sometimes my instincts say he wants it gone...

@OurSpecialLives 3 жыл бұрын

Hi! Thanks for watching and I’m glad it was helpful. We toss any mucus that vents out. It doesn’t happen all the time, more often if he’s sick. I keep a graduate (container) nearby and pour the mucus out of the syringe while it’s still hooked up to the extension. Mucus can add to nausea and also block the tube so I always get rid of it. Hope that helps!