Special Needs Morning Routine - Weekend Edition - SYNGAP1 - Autism - Special Needs Teenager
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- Опубліковано 2 жов 2024
- My morning routine on the weekends with my teenage son who has special needs.
We also shared our morning routine for school days here: • Special Needs Morning ...
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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...
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The handrails ur dad put in , make ur stairs warmer looking. I like them, nice job from kyles grandpa.
You are literally the most amazing Mum to Kyle. He's a very lucky young man & you are so blessed to have him in your life ❤
Thank you so very much! I agree... So blessed!
So glad to see y’all again. Hope that toe heals up super fast!! Get better buddy!!!!!!
Thank you! It's healing up pretty well; Kyle doesn't even seem bothered by it!
Oh my goodness Kelly thank you so incredibly much. We really love the aqua jogger! When Luke saw that he got so happy and he kept saying yes yes yes on his device. Of course we got it for him too. I also got one for myself, Luke is also on the ketogenic diet, for his seizures. Before he was on it, he had seizures every day and they were the bad ones. But he’s been on at eight months now, and no seizures not bad ones anyway just little ones once in a while. He’s doing great though. Thank you so incredibly much for your help you talk how we give them a hug and tell them we love them and you guys have a wonderful day bear hugs to both of you and have fun in those garage too. Oh yeah, I meant to also say. He’s also not potty trained either. He could not come out of grasp, the concept. But we love him just the way he is. He also, loves, the cheese crisps. And the yogurt as well. Hope you guys have a wonderful day and God bless oops, dictation messed up on me. What I meant was he could not grasp, the concept, of potty training. We did try, but it didn’t work well, but that’s OK because we love him just the same, we got him the aqua aqua jogger and myself one as well. Thanks.
You are very welcome!!
I have reflux too when I was little! And still do!😁😁😁😁😁I'm really glad I found your channel
That’s a good idea for him to watch tv while taking his medicine
I enjoyed watching your weekend routine. My husband also works third shift. It can be a challenge being responsible for two special needs kids by myself most of the time. I definitely need to be better about finding some time for a little bit of self care. How do you keep Kyle from taking his seat belt off when riding in the car? That has become a issue for us.
Yes, self care really helps, but I understand how challenging it is to fit it in. I wasn't always good at it when Kyle was younger. Kyle also takes his seat belt off at times; we use a "seat belt lock" that we got on Amazon when he seems to be taking it off more than usual. Here's a link to it:
amzn.to/3xxQQQD
I do medicine too every morning and night! I guess we have that in common
Loved seeing Kyle happy. What a lovely home you have. Greetings from the Philippines.
Hello! Thank you so much; we love our home because Kyle's bedroom is central to the whole house, so it's easy to keep an eye on him. :)
I can't imagine eating something every single day (even for just a week or two) without getting tired of it. The fact that you said it often keeps you full till dinner explains how you maintain a perfect figure in spite of what I'm sure are often very stressful days, which for many women can result in emotional overeating. To be honest, the breakfast you described does not sound very appealing to say the least. However, hearing that you've never tired of something that you have eaten EVERY SINGLE DAY for who knows how long leaves me no choice but to actually try it myself. I don't like even one of the 4 ingredients by themselves, so mixing them together should be interesting. Thank you for sharing your life and beautiful son with us. Have a wonderful Day By the way, after adding the coconut milk does it have more of a liguid texture or gooey one?
I've had a few others tell me they are going to try it! I know it doesn't sound appealing, but I truly enjoy it and even missed having it on Christmas Eve and Christmas! I must be strange! Lol🤣. As far as consistency, I add the coconut milk last so that I can add enough to make it a pudding-like consistency. Let me know if you love it or hate it!
Thank you for posting this. Your video came up as I was searching for epilepsy disorders. My research is really just a hobby of mine. I think my interest in the study stemmed from my adolescent years as I was diagnosed with petit mal seizures (now called absence seizures, but my dx was in 1975). My seizures quickly remitted when I started on ethosuximide, but for the most part I was non-compliant with taking the meds regularly. I was 12 when I was diagnosed, and it wasn't until I had status seizures that my mom sought out treatment for me. As I'm doing research (again just a hobby) I would be interested in the types of seizures Kyle has. I think it is remarkable that you treat Kyle so well, and really let him do his thing. His disposition is happy and during the video I was thinking Angelmann. I'm glad you clarified it in the video. Kyle seems like a really sweet young man.
Thank you so much! Kyle is very sweet the majority of the time! He has atonic seizures, with the onset just before his second Birthday, which is typical with SYNGAP1, his diagnosis. Before finding out he had SYNGAP1, he was tested for Angelman Syndrome, as you mentioned. Both syndromes present with many similar characteristics. Thank you for watching and following our story!
I just found your channel. And I’m glad I found it. Because I’m also a special needs kid. I diagnosed with a syndrome called DiGeorge Syndrome. It affects the heart. And talking and walking for some kids, but Jesus saved my life. Without Jesus saved my life, I wouldn’t be with my awesome family that I have right now. I’m adopted also. That’s why I’m adopted because my mom couldn’t take care of me she didn’t know how. But, she knew what was best. And she give me up for adoption because she loved me. And I’m glad I found your channel
Thank you so much for sharing all of this, and I am so happy that you have been adopted into an awesome family! I have heard of DiGeorge's Syndrome before; thank you for following along on our journey through our UA-cam Channel!
You guys are just so sweet
On a Saturday morning you plan for the week good idea I might try it myself PS I have heard that the Winters 🥶 in Ohio can be very cold though I I live in the England it can be cold here and our weather can be unreliable here not quite as cold as Midwest USA.
Yes, the winters in Ohio can definitely get cold, which is why I want to move further south one day!!
If anyones being mean to him, I will get the ninja kidz on them and they will deal with those bullies!!!
LOL! Thank you for the support! :) Thankfully, we've never had anyone express unkindness towards Kyle. Most people seem to be very understanding!
I’m glad for that😁ninja kidz is a friendly UA-cam channel who does Ninja Skills, so that’s why I said that😁
Have you ever thought of installing indoor security cameras throughout the house?
We have them for my special boy and they have been so helpful!
Motion detection, sound detection and almost anything else you'd desire to have.
I'm able to be in a different room than him and still watch him from my phone.
Helps bring us great peace as we do other things throughout the house.
Thank you SO much for this comment, as I've wondered about something like this. I am definitely going to look into it!
Ear plugs are helpful for night shifters. Also, make sure the home ventilation is good. A carbon dioxide detector is good to measure for adequate ventilation.
Cheers.
Thanks for the tips; I appreciate it!
Where in the USA do you come from is it a nice area?.
We live in Ohio and love it, although I would love to move further south one day for more warmer months!
Is it just me, or does Kyle have extremely long legs? I’ve always wanted to know how tall he is
LOL! He does, and he gets those long legs from us; I'm 6'1" and my husband is 6'6". I'm guessing Kyle is about 5'10" right now.
What a lovely home . We love watching you Kellie and Kyle
Thank you! We love our house because the floor plan is simple and Kyle's room is central to the whole house!
He doesn't get actual food in the morning ever?
He doesn't have a solid meal in the morning, but the drink has the calories he needs and is very filling. He has a snack and a solid meal later in the day.
Ilove your vlogs! Love how happy kyle is!❤
Greetings from Sweden :-)
Hello! Thank you for watching all the way from Sweden! :)
My friends mom told me that there’s a special needs water park in San Antonio Texas if you and Kyle would like to go! It’s for all ages and it’s for anyone and it’s free for Kyle! It’s called Morgan’s water park😁
Thank you for the recommendation! We've never been to TX but if we ever go, we will definitely check this place out!
Best wishes for you and your family
Thank you!
his kyle toilet trained now and how old is kyle plus he's a super sweet boy
Thank you! Kyle is 15 and no, not yet toilet trained. I forgot to mention that in the video. We're still working on it.
I have also son with autism
How old is your son?
Hi kyle
I love both veggie tales and wiggles. Which wiggles does he like? The old ones that are all men, or the others the more modern ones
He doesn't seem to have a preference. He watches both the old ones and modern ones pretty equally. How about you? Do you have a preference?
Such a sweet handsome boy
Good morning. Love your vlogs
Thank you so much for watching! :)
How many kids do u have
Two ☺️
Kyle is a awesome kid like your guys UA-cam videos I really like you and Kyle
Thank you so much!! ❤️❤️
I just love your videos! You explain everything so that your viewers understand, and I just love that you do that! Kyle seems like the happiest kid ever! He’s always smiling, or laughing or getting super excited about something! I didn’t know that Kyle knew the alphabet! That was cool to see him spell his name! He also seems like he understands everything that you say so where do you think he’s at level wise as far as his comprehension and learning? I’m just curious that’s all 😊
PS - I admire your dedication to exercising! I try to work out but I hate it so much, I’m built the same way you are, tall and thin, so obviously there isn’t a weight issue but I just can’t get myself to do it!
LOL...I completely understand about the working out. I'm always thankful once I get started, though. Also, thank you for all of your comments about my videos! Yes, Kyle knows the alphabet and also his colors, shapes, and numbers. He also recognizes sight words as well! It's difficult to say at what level he is in comprehension and learning because with some things, he seems at an early elementary age and with other things, he seems more like toddler age.
Kyle is a good kid
Kyle is a really awesome boy
I would love to see a video all about Kaylee like a Q and A or an “All About Me!”
That's a great idea! I've been talking to her about doing something like this soon!
I think Kyle enjoys the car rides!
Yes! He loves taking car rides!
Do you ever worry about living in a 2 story house with Kyle's room upstairs 🤔
Our entire living space is on the 2nd floor of a condo. We don't worry because we have a locked gate at the top of the staircase, and when we do use the stairs, we supervise him and also had my dad install a 2nd banister. ☺️
I love your videos and can’t wait to see Kyle
Thank you so much!
Your videos are excellent
I appreciate that; thank you for watching! ❤
You are an incredible woman.
You are so sweet to say that; thank you!
I love that he thought it was funny when his sister was in the room!
Me, too! I can always tell by Kyle's facial expressions when he notices something is out of ordinary or out of his routine. :)
Hi Kelly and Kyle, oh Kelly you are an amazing mother. I’m so happy with you and what you do for Kyle. I have a son with special needs, and he needs a lot of attention as well. Wow I’m just so impressed you make me so happy when I watch you and Kyle, interact together. I really am happy to see that. Wow that’s amazing. Thank you so much for sharing it with us. I also wanted to ask you, because I’m blind what is an aqua jogger? I’d like to find one for Luke. Where can you find them and how much are they? Thank you hope you have a wonderful day and God bless you i’m totally blind, and my son has autism and other special needs. I was wondering about the aqua jogger, because that would be good for him as well. He loves to swim that’s what he does most. I’d like to know about the aqua jogger. If you could email me out appreciate it. Have a wonderful day and a good couple less sorry about that, God bless.
Thank you for your message! We love the aqua jogger; it is made more for exercising in the pool, but it provides enough flotation support to keep Kyle above water. It buckles around the waist and if you search for aqua jogger on Amazon, that is where we got it. It's about $30. I hope this helps!