Hanging out with Our Teenage Son with SYNGAP1 - Multiple Disabilities

  Рет қаралды 21,268

Kelli & Kyle

Kelli & Kyle

Жыл бұрын

How we spend a typical weekend day with Kyle, our teenage son who has #syngap1 (a genetic diagnosis resulting in multiple disabilities). If there are elevators where we’re going, Kyle’s happy! Which means we’re happy!
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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
_________________________________________
LEARN MORE ABOUT SYNGAP1:
www.syngapresearchfund.org/

Пікірлер: 108
@flossyflue4305
@flossyflue4305 Жыл бұрын
He would love so much to join in your conversation, he raises and drops his vocals like we do. It’s lovely to hear.
@jackripleymaddiero
@jackripleymaddiero Жыл бұрын
Thanks. I love Kyles enthusiasm!
@KelliKyle
@KelliKyle Жыл бұрын
We do, too! Thank you for watching! 🥰
@suedelwig4854
@suedelwig4854 Жыл бұрын
I love how he is looking at everything with such big eyes like it's the first time he's seen something. Kyle's laugh just cheers me up and makes me laugh with him. Tell him Hi from me in Australia 🇦🇺🇦🇺💕💕
@KelliKyle
@KelliKyle Жыл бұрын
His laugh does the same thing for me! ☺️
@rapturewatchjesusiscoming3143
@rapturewatchjesusiscoming3143 7 ай бұрын
Aahhh... I love your sweet son! He reminds me so much of my son Daniel, he is 14 and has nonverbal autism. I love our boys' joy. May God continue to bless our precious families ❤😊.
@babyprincessplayground4250
@babyprincessplayground4250 Жыл бұрын
Having mental illness and special needs myself watching your videos make me happy you are a beautiful happy terrific mother God bless your family and Kyle is very lucky I miss my mom three months lost her cancer
@ginnywyatt5720
@ginnywyatt5720 Жыл бұрын
the joy and excitement on Kyles face is so sweet. love all his videos Kyle brings so much joy and smiles every time. thanks so much💕💕💕💕💕💕
@StarryDreamer28
@StarryDreamer28 Жыл бұрын
in the elevator it sounded like he was trying to say "two" and "hi" lol. glad ya'll had so much fun!
@a.t.5370
@a.t.5370 Жыл бұрын
Dear treasure! I love him and when he smile and laughs with his little voice I love him more if possible.
@PhD_Author
@PhD_Author Жыл бұрын
Kyle teaches us to find joy in the simple things in life. Don’t always need to be chasing riches and material things. Love, family, Nature and the World around us are wonders we should savour everyday.
@ButterflyMariposa226
@ButterflyMariposa226 Жыл бұрын
🦋I bet Kyle had lots of fun going to the mall especially on the elevators!!! Blessings wonderful Family 🥰🌸🙏🏻
@tammynelson1190
@tammynelson1190 Жыл бұрын
Really enjoyed seeing Kyle with mom and dad having a fun Saturday!!!
@tamsmith9326
@tamsmith9326 Жыл бұрын
I love watching Kyle in every movie he’s doing so well
@marymikehawkins6682
@marymikehawkins6682 Жыл бұрын
You guys are fantastic, Kyle is fantastic, what a beautiful day! 🌹
@suepalladino4515
@suepalladino4515 Жыл бұрын
It's great to see you guys again and what a fun day that was ❤
@CWengrovius1420
@CWengrovius1420 Жыл бұрын
I enjoy these videos & learning how his syngap1 & how well you guys care for Kyle is so cool. I’m pray you all will have a great near future together as a family! God bless you all always!
@KelliKyle
@KelliKyle Жыл бұрын
Thank you!!
@TomsOnUK
@TomsOnUK Жыл бұрын
Your a great mum and father taking your son out and doing fun activities
@meganharrell1021
@meganharrell1021 Жыл бұрын
What a fun sunny Saturday!!!! I love seeing the three of you going up and Down the Elevator with Kyle I can tell Kyle Just loves the Elevator ride!!!
@risika57
@risika57 Жыл бұрын
Hi Kelly, Jesse, and Kyle. I don't know if y'all recall me, (Stephanie) but my mom was one of the ladies you ran into in this video. She told me about the interactions and shared the video with me due to my involvement in the DD community! I work as a Behavior Technician for adults with developmental disabilities in an adult dayhab. Anyways, I went off course here. I just wanted to say this video gave me a huge smile to see a family so involved and how happy and interactive he is! The DD community is such an amazing community to be a part of and my clients bring so much joy to my life on the daily. Thank you for sharing a small glimpse of what life is like for Kyle and his family!
@KelliKyle
@KelliKyle Жыл бұрын
Hi Stephanie! I'm so glad you reached out; it was fun running into them while we were creating this video. They hadn't seen Kyle in years and he loved the attention he was getting from them. ❤️ I love hearing that you work with others like Kyle and their families. It's such challenging work, but so rewarding!
@risika57
@risika57 Жыл бұрын
@@KelliKyle I adore the field. I can't see myself doing anything else! Thank you for sharing Kyle with us he seems like a joy to be around!
@zedoctorrichtofen9
@zedoctorrichtofen9 Жыл бұрын
I'm so happy you continue to upload! we love you guys! ^^
@KelliKyle
@KelliKyle Жыл бұрын
🥰 Aww, thanks!
@feliciafisher3748
@feliciafisher3748 Жыл бұрын
Hello handsome Kyle, thanks for sharing part of your day. Seeing you happy makes me happy. You know how to have fun. Thanks Jesse and Kelli, I love your son.
@KelliKyle
@KelliKyle Жыл бұрын
🥰❤️
@JL-nz8hj
@JL-nz8hj Жыл бұрын
Seeing Kyle use his nose on the phone was the best! So funny!
@KelliKyle
@KelliKyle Жыл бұрын
🤣
@independentfilmandhealing
@independentfilmandhealing Жыл бұрын
What a fun day! Great to see he is so active and loves it. Thanks for posting and making people aware of syngap1. I've only learned of it from your videos which inspired me recently to do a birthday fundraiser for the Syngap Research Fund which was a success. They are sending me some gifts to thank me, but really the thanks goes to you!
@KelliKyle
@KelliKyle Жыл бұрын
That's awesome!! Thank you so very much! ❤️
@KelliKyle
@KelliKyle Жыл бұрын
And I forgot to mention... Happy Birthday to you! ☺️
@independentfilmandhealing
@independentfilmandhealing Жыл бұрын
@@KelliKyle thank you!
@kathleenkuss8583
@kathleenkuss8583 Жыл бұрын
God Bless this beautiful family 🙏
@BethanyDavies-pz7to
@BethanyDavies-pz7to Жыл бұрын
You and Kyle are so amazing ❤
@elleneirk8066
@elleneirk8066 Жыл бұрын
What a beautiful wonderful family 😍
@eunhyunbates2801
@eunhyunbates2801 Жыл бұрын
I am so happy that I have found you! I am a mum of a 12 year old boy on the spectrum. I think I have a lot to learn from you. Thank you for the videos.
@KelliKyle
@KelliKyle Жыл бұрын
You're welcome! Thank you for watching! ❤️
@nancyschumacher8940
@nancyschumacher8940 Жыл бұрын
Great video! So much activity...im sure you were all 3 exhausted. I especially like that you showed the getting home portion because it reminds us that Kyle needs attention ALL the time. Its your real life.
@KelliKyle
@KelliKyle Жыл бұрын
YES! You're exactly right... Kyle needs constant supervision and it can be exhausting. Thanks for watching and commenting! ☺️
@donnabrown4349
@donnabrown4349 Жыл бұрын
It is so nice that children and adults today with disabilities have communication devices. I see Kyle loves elevators. I have a fear of them. Maybe I can think of Kyle every time I ride one.
@KelliKyle
@KelliKyle Жыл бұрын
Yes, that should help!! ☺️
@aspiechan420
@aspiechan420 10 ай бұрын
You are an amazing family! -an autistic man with ADHD from NW Ohio
@catiehays3361
@catiehays3361 Жыл бұрын
Yay, a new vlog!!
@KelliKyle
@KelliKyle Жыл бұрын
😁
@NickyJohnK219
@NickyJohnK219 Жыл бұрын
I hope you’re all having an amazing day. I enjoy watching your videos.❤❤❤❤❤❤❤
@KelliKyle
@KelliKyle Жыл бұрын
Thank you for watching!
@StudyToLeadWithAI
@StudyToLeadWithAI 6 ай бұрын
ur such a mother wonderful.......who else can do other than mother
@nicolegarrett9876
@nicolegarrett9876 Жыл бұрын
Helli Kelli Kyle and family ❤
@babyprincessplayground4250
@babyprincessplayground4250 Жыл бұрын
Fun video you you are a good mother after losing my Mom 2 months ago to cancer I have mental health issues and your videos make me feel better thank you
@KelliKyle
@KelliKyle Жыл бұрын
I am so sorry about the loss of your mother. I can imagine how you must feel and I understand the mental health difficulties that come through grieving. ❤️
@babyprincessplayground4250
@babyprincessplayground4250 Жыл бұрын
​@@KelliKyle thank you friend 🙏
@cassiepugh4029
@cassiepugh4029 Жыл бұрын
My daughter loves watching Kyle speak with his tablet. She has a tablet “talker” too and uses it to communicate with us as well as sign language. 😊
@KelliKyle
@KelliKyle Жыл бұрын
I'm so glad she has one! It has definitely helped with frustration in our household!
@katharinaspeelman1623
@katharinaspeelman1623 Жыл бұрын
It’s sometimes hard to believe he’s a teenager with these problems!!! But he’s doing great!
@christinehines1270
@christinehines1270 Жыл бұрын
Thank you for posting another great video. It was so neat to have met yall in person the other week at J.J's I have been a huge fan since day one. my best friend has a daughter with the same thing as Kyle. Her daughters name is Rhonda and is 18. Much love and respect from Christine and Kayla ❤
@christinehines1270
@christinehines1270 Жыл бұрын
Also that is my favorite mall of all time. 😊
@KelliKyle
@KelliKyle Жыл бұрын
Hi Christine!! We loved meeting you at Jungle Jim's! It was so fun to meet a follower of our channel in person! Is Kayla your daughter who was with you when we met?
@christinehines1270
@christinehines1270 Жыл бұрын
@@KelliKyle yes that was my 12 year old daughter she is a big fan as well.
@DanielleOlsen-ng8ox
@DanielleOlsen-ng8ox Жыл бұрын
God bless you.
@RodriguezGameingchannel
@RodriguezGameingchannel Жыл бұрын
Nice video why kaylie get more free time
@icturner23
@icturner23 Жыл бұрын
Congratulations to Kaylie!
@KelliKyle
@KelliKyle Жыл бұрын
Thanks! ☺️
@lizzyleverone7253
@lizzyleverone7253 Жыл бұрын
Congratulations on Kaylie getting her drivers license
@KelliKyle
@KelliKyle Жыл бұрын
Thanks! It sure helps me out a lot, now that she can drive!
@lizzyleverone7253
@lizzyleverone7253 Жыл бұрын
@@KelliKyle you’re welcome I have to agree
@josevladimiraustria2736
@josevladimiraustria2736 Жыл бұрын
Kyle is lucky to have a loving and nurturing parents. kelli and Jesse kudos to both of you for being a wonderful parents to kyle and kaylie.
@babyprincessplayground4250
@babyprincessplayground4250 Жыл бұрын
I just have one question how do you take care of Kyle when he hits puberty or has facial hair how would you take care of him or do you don't have to shave him
@rachelwilkinson8798
@rachelwilkinson8798 Жыл бұрын
This is one of my favorite videos you have posted. I loved seeing Kyle doing his own thing when he left you guys on the patio. It was cute to see him shut the door and curtain behind him! Does he ever get really upset when you discourage him from the laundry room?
@KelliKyle
@KelliKyle Жыл бұрын
No, he doesn't because we usually do our best to distract him and give him other appealing choices! We can lock the door from the outside but got out of the habit about a year ago when he never tried going in there anymore (he used to go in and press the buttons and stop the washing machine mid-cycle!). After this past Saturday, we're back to locking it!
@Amanda-c7k6u
@Amanda-c7k6u Жыл бұрын
That was funny when Kyle went in to the laundry room
@raebro8893
@raebro8893 Жыл бұрын
So fun! Has Kyle been taken off his Keto diet? Do you normally take his communication device with you when you go out ?
@KelliKyle
@KelliKyle Жыл бұрын
He is now off the diet; I think I did a video about it last year. We do not currently take his device out and about with us but it's something I would like to try soon.
@babyprincessplayground4250
@babyprincessplayground4250 Жыл бұрын
I had some family with Down Syndrome an autistic behavior and they don't hit puberty so they're not very hairy people for boys or girls do they not have to worry about that or if they do what would you do does people don't hit puberty or grow facial hair
@a.t.5370
@a.t.5370 Жыл бұрын
Hello my friends! Saturday we ( Fabio, his twin and me) went to the beach and had a good time! Does Kyle like the beach? Kisses and hugs for you all💕
@KelliKyle
@KelliKyle Жыл бұрын
He has not been to the beach since very, very young, but I think he would enjoy it! If we ever get to go to a beach with him, I'll definitely make a video!
@a.t.5370
@a.t.5370 Жыл бұрын
@@KelliKyle yea do it! Maybe you don't live very near to the beach. Sea is so relaxing and fantastic! And walking the shoreline looking for shells...throw each other sandballs and then run into the sea 😁 Picnic at the lighthouse, and other beautiful things I do with my children. Now here in Venice Italy it's 8 in the evening and what's the time in your country? A warm greeting with hug sweetie 💖
@KelliKyle
@KelliKyle Жыл бұрын
Thank you! The beach scene you described sounds perfect! ❤️ We're in Ohio, so it's about 2 PM here and we're hours and hours from a beach, unfortunately.
@a.t.5370
@a.t.5370 Жыл бұрын
@@KelliKyle Ohio? Wow! So have a good aftetnoon. We are having dinner and then...let's finally sleep! Bye Kelli and Kyle and Kayleigh(did I write right?😅)and dad. 🤗
@shaniabywater-nw4hw
@shaniabywater-nw4hw Жыл бұрын
@@KelliKyle know kelli have you upcoming more moring rounties plasssssssse
@MiaStrayer
@MiaStrayer Жыл бұрын
What kind of apps does he have on his iPad
@KelliKyle
@KelliKyle Жыл бұрын
It's a Kindle Fire Tablet, which he only uses for KZfaq. ☺️
@Puppy_1
@Puppy_1 7 ай бұрын
What type of cup does Kyle like to drink out of? I am looking for one for my nephew. That would be easy for him.
@KelliKyle
@KelliKyle 7 ай бұрын
We use a protein shaker bottle. The unfortunate thing about it is that it's not spill proof.
@Puppy_1
@Puppy_1 7 ай бұрын
@@KelliKyle oh, OK I wasn’t sure what you used I use what’s called a nosy cup because due to a genetic condition that I have, that’s really rare eyedrop stuff sometimes because my hands jerk due to my chronic seizures the condition I have is called Lebers Ambrosius optic atrophy syndrome it’s really rare or LCA as we call it it’s very rare and hard to find at first they thought I had optic nerve hypo pleasure but I did not. Then they thought I had Septo optic dysplasia, but I did not have it then they found the gene that I have which is levers or LCA, which is Ken to retinitis pigmentosa I basically have the RPG but the type of gene that I have is called liber, it causes blindness, seizures, intellectual disability. Sometimes it causes some brain anomalies. Sometimes it does that’s a rare case but that’s what I have. It can also cause short scratcher and some orthopedic issues but mine orthopedic problems came from mild CP. I also wear AFO so much fun. Anyway, I hope Kyle’s OK after that small seizure he had I know what that’s like. Hope you guys have an amazing Christmas and hope to see a Hotel tour part two that would make me very happy. I love those two Hampton Inn and suites is awesome. They’re amazing. I love that place. Oops I meant stat. Sorry about that. I’m using my phone to type.
@independentfilmandhealing
@independentfilmandhealing Жыл бұрын
I'm curious. Does Kyle like movies? If so, what kind of movies does he like? Are you guys able to sit down and watch a movie together in the living room and eat popcorn, even if for a limited amount of time?
@KelliKyle
@KelliKyle Жыл бұрын
That's a great question! No, Kyle will not sit still long enough to enjoy a movie together. He loves watching KZfaq videos and children's shows (like Blues Clues & Barney) but will watch 30 second - 2 minute segments before stopping and rewatching the same parts over and over, or skipping to a different segment. We've tried to get him interested in movies before but with no success.
@independentfilmandhealing
@independentfilmandhealing Жыл бұрын
@@KelliKyle Does he like snacks during the day? If so, what does he like. By the way, I found it hilarious when he was trying to turn off the massage chair. So funny! He's such a smart kid!
@justtotallygorgeous
@justtotallygorgeous Жыл бұрын
I hope you don’t find this rude, but do you ever wonder what Kyle would be like without SYN GAP 1? I know you wouldn’t change him for the world! But imagine him sitting exams and being interested in girls/boys, video games, the pushing boundaries that kinda stuff - I just wondered is all 😊
@KelliKyle
@KelliKyle Жыл бұрын
It's not rude at all to ask a question like this! ☺️ I absolutely have had moments where I've wondered about things like this. I try not to linger on those thoughts too long, as it can cause me to sink into some painful emotions. And although I wouldn't "change" Kyle's personality, I would absolutely take away this disorder, and the symptoms it causes, if I could. ❤️
@mackenziehacker7787
@mackenziehacker7787 Жыл бұрын
Is kyle still eating French fries and that stuff????
@laylachaaban2243
@laylachaaban2243 Жыл бұрын
What type of diapers brand does he wears
@KelliKyle
@KelliKyle Жыл бұрын
Tranquility
@BethanyDavies-pz7to
@BethanyDavies-pz7to Жыл бұрын
How old is Kyle now and when is his birthday
@KelliKyle
@KelliKyle Жыл бұрын
He turned 17 on March 21.
@BethanyDavies-pz7to
@BethanyDavies-pz7to Жыл бұрын
Dose Kyle have autism or adhd or both
@KelliKyle
@KelliKyle Жыл бұрын
Autism is part of his diagnosis of Syngap1 but he does not have ADHD.
@rosebishop252
@rosebishop252 Жыл бұрын
Please take his talker with him at times so he can talk
@KelliKyle
@KelliKyle Жыл бұрын
It's a goal I have for him! It's not so easy because he perseverates on certain buttons on the talker and then it can become a distraction and cause behavior problems. I'll make a video one day when we become successful in taking it with us. ☺️
@user-yv1wy8my5z
@user-yv1wy8my5z Жыл бұрын
Он так ручки расставляет словно птенчик🐣🐥🐤🤍
@user-yv1wy8my5z
@user-yv1wy8my5z Жыл бұрын
Мило:)
@kurtkonczak538
@kurtkonczak538 Жыл бұрын
He’s looking way too skinny… he needs to gain weight. It seems like he is having more trouble walking too
@KelliKyle
@KelliKyle Жыл бұрын
He was at the doctor yesterday and his weight is perfect! It's genetic...I was terribly thin in my teenage years. His gait is about the same...it probably looks worse due to his growth spurt and long limbs! He's 6'2" now.
@flossyflue4305
@flossyflue4305 Жыл бұрын
My grandson with C.P is too skinny too, it’s about muscle tone too if they have low muscle tone they can look thin. My grandson has hollow legs he eats plenty and never gains weight.
@KelliKyle
@KelliKyle Жыл бұрын
@@flossyflue4305 yes, muscle tone is definitely a factor. Kyle eats a lot and we make sure he's getting an adequate amount of fats, proteins, and calories per day.
@kurtkonczak538
@kurtkonczak538 Жыл бұрын
@@KelliKyle ok just concerned that’s all since he seemed like he lost weight this year, if the doctor said he’s ok then it should be fine!
@echofoxtrot2.051
@echofoxtrot2.051 Жыл бұрын
​@@KelliKyleWow! He's 6'2" now? Geez he's growing like bamboo! My brother grew like that. He stopped at 6'4".
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