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SYNGAP1 Questions and Answers - Q&A #3 with Kelli & Kyle - Disabilities and Special Needs Q&A
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- Опубликовано: 12 авг 2024
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We answer the questions you have sent in about Kyle and our lives, living with SYNGAP1, multiple disabilities, and special needs.
Q&A Video #1: • SYNGAP1 Questions and ...
Q&A Video #2: • Special Needs and SYNG...
Christmas Video Mentioned: • Christmas Day with Kel...
Special Needs Podcast Mentioned: podcasts.google.com/feed/aHR0...
Question Topics & Time Locations:
00:29:48 How do you get past looking at the future?
01:39:88 What is the plan for Kyle when we are no longer able to look after him?
03:32:07 What does Kyle plan to do when he is an adult?
04:26:20 FreePrints
05:46:01 Will Kyle ever be potty trained?
06:35:03 Did Kyle have a hard time learning to use his speech device?
07:48:15 What is the main reason Kyle doesn’t produce speech himself?
08:29:13 What do you think Kyle would most like to be able to do that is beyond his skill level?
09:06:15 What are Kyle’s socialization skills like at school?
09:40:03 Do you have Kyle perform any tasks at home like a simple chore he is capable of?
10:16:00 By what age did you have a pretty good idea of Kyle’s developmental level?
10:50:22 Was there a time when you expected/hoped he’d produce speech, for example?
11:12:07 What was it like coming to terms with the realization that he wouldn’t be able to do certain things?
11:49:23 How has Kyle changed over the last 12 months or so?
12:27:24 What supports would you benefit from that you do not currently get?
13:22:16 How do you manage time for your daughter?
14:01:07 What is Kyle and Kaylie’s relationship like?
14:40:20 Kaylie: What’s the most difficult thing for you in having a disabled sibling and no other siblings? Do your friends understand and has anyone ever been hurtful to you about Kyle?
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Kyle was born in 2006 and has SYNGAP1, a rare genetic disorder that causes epilepsy, global developmental delays, intellectual disability, autism, etc. I share more about his diagnosis in this video: • What is SYNGAP1 | Rare...
#syngap1
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Order my COLORING BOOK for Special Needs Moms & caregivers here: amzn.to/3hVa6kt
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FTC Disclaimer: This description contains a paid sponsorship from FREEprints which helps support my channel.
Check out @FreePrints today and get 15 free photos plus free shipping with KelliKyle115
So Kyle got special needs because has communication device
Thank you to both Kelli and Kaylie for answering my questions. It’s hard seeing you get upset but I know that you won’t have answered any you didn’t want to. I know you have plenty of hard moments but I think you’re both setting a great example for others, as is Jesse and also Kyle himself (by the positive things you help him to show).
Your speech is so articulated Kelly which makes your videos flow & make them very enjoyable.
As for Kyle's future, I have no doubt in my mind that he is going to have a future that fulfils every need. Please don't doubt yourself or your abilities to care for Kyle, he's a wonderful young man & you're wonderful parents ❤️
Thank you so much for your kind comments. ❤️❤️❤️
Hi Kelli what a great Q&A video I gotten teared eyed too! Kyle is the sweetest Happiest Boy I ever met!!! I love his Happy Sounds he makes it warms my heart to see him Happy and smile 😄😄😄😄😀😀😀😁😁🤗🤗☺☺☺No matter what happens in his Future his Future is Bright and you are an amazing mom to Kyle very Inspiring mom as well! can't wait for your next Inspiring video!!!!!😍💖💖💖💖💖💖💖💖💖
Your video are so informative, thank you making them ❤
Thank you so much for the time you are dedicating to sharing your unique and special life with your amazing son Kyle!
It brings so much awareness to different conditions and it is inspiring to see the creative solutions to some of the challenges that come with living with rare conditions.
Have you heard of Special Books by Special Kids (SBSK)? They interview special needs families all over the country and have a very large following and community! There is even a young girl who has many of the same challenges as Kyle (her name is Ruby) although her diagnosis is different.
Anyway, I just wanted to say I think you are an amazing Mom (and Dad) and that Kyle is blessed to have such a loving family!
Thank you so much for your comment! I follow SBSK and know about Ruby, too! ❤️
The right solution for Kyle’s future residence will present itself and all will be well. Kyle loves his family and is beloved by you all so it will be a hard move. But he will thrive there, I know he will.
Thank you so much for this comment! ❤️❤️❤️
My autistic daughter {she is verbal} has just had to go get a g-tube implanted in her stomach just 1 day ago amd we post videos on Snapchat, she is squirmy at times and it causes me to have to hold her down gently and she is also diabetic, we have had to go to the hospital many times because of tantrums making her too low, or too high. I just had another baby and it's difficult, working with her and her feelings while having to breastfeed or hold and soothe the baby. The main thing I'm worried about is getting pregnant again, I don't think that i could have another baby because of stress. I am only 20 years old, I had my daughter at 15. I don't talk to my mum, my dad passed in 9/11. The father of the children is present and works a full-time job, i am still on maternity leave. What am I gonna do when I have to go back to work, pay for childcare? I don't have a good finance plan. My daughter doesn't want the g-tube. Now i have Dexcom and g-tubes to change every day, multiple times a day, my new baby is going to be a year on April 11th. We are all in the hospital, waiting for my daughter to be ready to go home. I take a pregnancy test every month if i miss my period. I am scared that I will lose a baby again. If i do get pregnant it's not the end of the world, I will just have to send her to childcare sleep-away camps for 9 months. Thats my doctor's best words. I'm not sending her, I am doing enough for her and my new baby. You are the best special needs mum I have seen. If you read this or not, my daughter and I are sending prayers for you.
I like to hear that title is progressing
I always resonate with your videos. They are so meaningful to me. I love that my questions were answered! Can you please share the special needs podcast that you mentioned?
You are a wonderful mom ❤
Aww, thank you! ❤️ I meant to share that podcast in the description box, so I'll add it there, too, but here's a link. It's called LOMAH Disability Podcast: podcasts.google.com/feed/aHR0cHM6Ly9sb21haC5saWJzeW4uY29tL3Jzcw?ep=14
Thank you so much! ❤
Thanks for the video. I love Kyle and your whole family. I’m a SLP and worked in public schools my whole career. I love kids and have worked with many with disabilities. Can you get respite care in Ohio? Or help thru MRDD, if that is what it is still called? I think there are people around in grad programs or who would like to earn extra money. If you could get the resources to find them. Just keep asking his therapists if they know anyone. I worked for a boy with Down’s syndrome one summer while his parents worked. Was paid thru an agency . I loved being with him and taking him out in the community.
Anyway, best of luck !
Thank you for the information and for all that you have done to help families like mine. ☺️ We have a County Board of Developmental Disabilities and receive funds each year that we can use for respite or anything that insurance doesn't cover. Currently, we use those funds to pay for his diapers. I'll keep researching!
Stay strong
I'm curious, does Kyle have any favorite foods that he normally asks for, aside from yoghurt? Thanks for your amazing videos!
Eggs! He asks to eat eggs several times per day, every day! 🤣
@@KelliKyle nice! Do you keep a dozen hard boiled in the fridge? ☺️ By the way, your videos are incredibly inspiring and they bring a lot of joy to many of us! Keep em coming! Take care.
My question is at 3:31.
To whom it may concern,
Now that Kyle is 17 and you can no longer use the United healthcare children's foundation, how do you pay for the diapers? What grant do you use, do you pay for them out of pocket?
I have a disability and I used diapers as well and I would like to know how to get diapers covered when your insurance does not cover them
Do you still use the tranquility all through the night diapers?
Sincerely,
David
Phillips
Are long “lanky” limbs a characteristic of syngap? I notice Kyle has quite long, thin limbs, so just wondering if that is caused by his condition or something else? You are a great mother, and very interesting, informative, clear and coherent!
Aww, thank you so much!! 💗 The long limbs are not from SYNGAP but from me! 🤣 He has my build and I looked just like that growing up. It's difficult to tell our height from seeing us on video, but Kyle, Kaylie, and I are 6'1" and Jesse is 6'6".
👍👍❤
Are you able 2 get respite care there??
There are a few organizations in our community that offer a few free respite nights per year. We've taken advantage of them when it works out and Kyle enjoys them. We also receive a limited amount of funds through our county that we can use to pay for respite care, but we usually use those funds to pay for diapers since our insurance doesn't cover them.
my Chad is Chad Ryan and i want to know more information about SYNGAP1 Please
@kelli&kyle just wondering is kyle still on the keto diet
He transitioned off of it over the last 6 months because his current seizure medication dosage (and some other neurological explanation that I don't quite understand 🤣) is keeping his epilepsy well controlled. He still eats low-carb with his first two meals of the day but eats more carbs at dinner time.
@@KelliKyle I really sorry if you don't understand my wording I have Autism since I was 6 years old
Best Mom
Are you older than him
🙏🙏🙏🙏🙏🙏🙏🙏🙏🙌🏼🙌🏼🙌🏼🙌🏼🙏🙌🏼🙌🏼🙌🏼🙌🏼☘️🍀👨🦱