We typically don't take the little girl that I care for out to events either. Her parents will occasionally take her out to things like trunk or treat at her brother's school, and she goes to family dinners at her grandparents house, but other than that its usually just home or hospital for appointments. I homeschool her, and we have all of her therapists come out to the house. Usually one therapy per day (Speech, PT, OT, and Vision) and on Friday a homebound teacher from the school district will come out. She just doesn't do well outside of the house. She shuts down and doesn't enjoy herself so we have no qualms about having her miss events. If her parents have something to do with her brother I will pick up an extra shift or her Oma will come sit with her for a couple of hours. Vacation usually looks like a beach house where we can have one of us stay back with her if need be. It's just what works!
I really loved this Q&A, and appreciate you being so open. It can't have been easy to share so vulnerably on the internet. If you do ever do a video about your daughter and her relationship with Kyle (with her support/participation, of course!) I'd be keen to watch it and learn from her perspective as well. I'm sure she has some unique insight, especially as a teen coming into herself as well, that will grow and change as she grows and changes. Thanks for sharing!
I resonated with you when you talked about grief over motherhood. I have only just realized I was/am experiencing this with my son. Things aren’t what I expected but I wouldn’t wish it any other way. I questioned myself and did the “why me” for a long time. I believe that God put me in this position for a reason. Reasons that are still unknown to me but I thank him for it now. I agree it is a struggle and others don’t really understand our lifestyles. I find different challenges everyday and notice a lot of it has to do with myself. I have been in therapy for a year and it opened my eyes to a lot. It has helped with my relationship with my son. I still feel alone at times. Watching your videos makes me feel a lot less alone. My sons diagnosis are different but I see similarities between him and Kyle. I appreciate the work you put into these videos and sharing all the little details. I am curious if you could maybe do a video about sensory processing disorder? I have always wondered if my son has this. I have never had a medical professional bring it up. Thanks again Kelli. You and Kyle are amazing ❤️
You are definitely not alone and I'm glad my videos can help you in some way. ❤️ I'm also glad you're in therapy...it was SO helpful for me. How old is your son?
I love Kayle so much you’re doing such a great job with him getting big hugs and kisses for me I know he doesn’t know many but it’s Tam again I keep up-to-date with all your information you’re so good to hear how he is going and yourself lots of love Tam
Great video Kelly I myself get sad every time the conversation about my boys care when both their dad and I are gone I have 2 autistic boys 17 and 15 one which is non-verbal. Thank you for all the info.
HI Kelli and Kyle great video Kelli!!!!! I know how you feel Kelli about Kyle's future once he is 22. I'm 29 and I go to a special place called Alyssa Burnett Center in Bothell, Washington it's with Seattle Children's Hospital and Autism center in Seattle if you are curious there is a video on you tube and they have face book too. they have Music Classes, art, Disney, Zumba and etc. you are such an amazing mom to Kyle supermom!!! I always love watching your video's Kelli! And Go Kyle Go love you buddy😀😀😀😄😄😍😍💖💖💖💖💖💖💖💖💕💕💕💜💜💜💜💐💐💐💐💐💐💐
Thank You Kelli you don't know how much it means to me/ a relief to hear at a point I felt guilty to feel grief when we got my son's diagnosis for Syngap1 to the point i never spoke of it. I appreciate the videos because I can finally say we are not alone
Hi, Jazmin. I can relate, also. Our son, who is now 14, was diagnosed with Syngap1 two years ago. I went through a length grieving process, which lasted almost 10 years. I finally began to accept and move forward, although I still have my moments. I agree with you in that it's so relieving to know there are other families experiencing the same disability and situations that come along with it.
You are definitely not alone, and I know how you feel. In the early years, I tried to keep it all inside and felt guilty, but no more! Counseling helped me, as well as journaling and eventually sharing with others. I came to a place of acceptance but still cycle through the stages of grieving at times, which is completely normal. Hugs! ❤️
SRF just has a wonderful presentation by syngap1 mom of adult daughter on behaviors and care. She went over options for care in home and out of home after 18yo. Perhaps if would be helpful. My daughter is only 4 but I found it helpful. Maybe you can get some tips from it as well, if you didn’t already :) thank you for doing what you do! Syngap1 awareness and engagement is a key to cure.
Thank you for sharing this! I just started listening to that presentation yesterday and I'm about halfway through so far. Yes, she shares great information! Here's the link for anyone interested: ua-cam.com/video/rWJw7XtdQyY/v-deo.html
Kelli, I have so much respect for you..you are a wonderful loving mother and I love how you did this video…I am in my late 60’s . I grew up as the youngest of 4 girls. My oldest sister who is 7 years older than me has a rare form of epilepsy. She has daily seizures..some are strong and some are light ones…they are random and can be without warning. As a younger sister ….it was hard for me to be comfortable when we were in public because I was always nervous she was going to fall and hurt herself and other people can be harsh…she is also mentally challenged although she can speak ..write. And read. She is still living and lives with my other sister who lives walking distance from me.. we take good care of her as you do Kyle…it is a hard life, but there are beautiful times too as you said…. I wish I could give you all a big hug because I understand all the emotions that go along with raising a special need child…Kyle is so fortunate he has such a wonderful family around him. I love your story🥰🙏🙏🙏🙏🙏🙏🙏
Thank you so very much for your comment and sharing your experience with me. I've got tears in my eyes... It's always so nice to know when others can relate. ❤️
Hi, Kelli. Thanks for sharing. It's almost as if you were describing my family :) Are you able to share the school that Kyle is attending? I think I heard you say that it is a school for special needs. We pondered and prayed about taking Jackson out of public school (self-contained classroom) and sending him to a special needs school, but decided against it. As you know, we are now homeschooling, but will reconsider his school situation in the future. Thanks again!
I'll email you the name of Kyle's school. Kyle attended our public school his first grade year but it just wasn't the right fit and instructional design for him. We use the Ohio Autism Scholarship to pay for him to attend a private school for children with Autism and other special needs. He's been attending there since 2014 and we love it! Small class sizes, individual attention, year-round model, etc.
You are so brave & inspiring, helping SO many families to not feel alone and believe that they can do it all ❤️. You have such a beautiful family and wonderful content that is so comforting and as a special needs mommy myself, it is so important.. ✨ you go momma ! 👏🏼🦋
I love watching how you and your family bring awareness to this disorder (I hope that I used the terminology right), he always brings a smile to me seeing how he has made a lot of gains!!!! You, your husband and his sister have been showing your true love for him and to each other!!!!! I also know that it hasn’t been easy but you are an amazing family!!!! I love how he gets excited!!!! Much love to you and your family!!!!
I am registered blind and one of my eye conditions is nystagmus. I really struggle with depth perception and change of flooring. Mine seems to be worse when I am tired.
Omg you are doing a great job with him its tam I love you both playlist such a wonderful boy and you’re such a loving mother you do such a great job got bless
Hi Kelly and Kyle, what does Kyle like to eat most? My son who are severe autism and other disabilities likes to eat cheese crisps which are keto friendly and he loves them and he also loves cream of wheat which somehow my mom found keto friendly as well. He also loves any kind of something it’s very crunchy and crunchy think he’ll eat it. Should I have is what is Kyle‘s favorite drink my son will drink chocolate milk every day if you let them this kid loves chocolate milk that is a big favorite.
The first 1,000 people to use the link or my code kellikyle will get a 1 month free trial of Skillshare: skl.sh/kellikyle04221
You are so amazing and calming. It's obvious how much Kyle loves you.
We typically don't take the little girl that I care for out to events either. Her parents will occasionally take her out to things like trunk or treat at her brother's school, and she goes to family dinners at her grandparents house, but other than that its usually just home or hospital for appointments. I homeschool her, and we have all of her therapists come out to the house. Usually one therapy per day (Speech, PT, OT, and Vision) and on Friday a homebound teacher from the school district will come out. She just doesn't do well outside of the house. She shuts down and doesn't enjoy herself so we have no qualms about having her miss events. If her parents have something to do with her brother I will pick up an extra shift or her Oma will come sit with her for a couple of hours. Vacation usually looks like a beach house where we can have one of us stay back with her if need be. It's just what works!
Thank you for sharing your experience!
I really loved this Q&A, and appreciate you being so open. It can't have been easy to share so vulnerably on the internet. If you do ever do a video about your daughter and her relationship with Kyle (with her support/participation, of course!) I'd be keen to watch it and learn from her perspective as well. I'm sure she has some unique insight, especially as a teen coming into herself as well, that will grow and change as she grows and changes. Thanks for sharing!
You're welcome! She's not quite ready to be the focus of a video yet, she says, but if she ever does, we'll share her perspective. ☺️
I resonated with you when you talked about grief over motherhood. I have only just realized I was/am experiencing this with my son. Things aren’t what I expected but I wouldn’t wish it any other way. I questioned myself and did the “why me” for a long time. I believe that God put me in this position for a reason. Reasons that are still unknown to me but I thank him for it now. I agree it is a struggle and others don’t really understand our lifestyles. I find different challenges everyday and notice a lot of it has to do with myself. I have been in therapy for a year and it opened my eyes to a lot. It has helped with my relationship with my son. I still feel alone at times. Watching your videos makes me feel a lot less alone. My sons diagnosis are different but I see similarities between him and Kyle. I appreciate the work you put into these videos and sharing all the little details. I am curious if you could maybe do a video about sensory processing disorder? I have always wondered if my son has this. I have never had a medical professional bring it up. Thanks again Kelli. You and Kyle are amazing ❤️
You are definitely not alone and I'm glad my videos can help you in some way. ❤️ I'm also glad you're in therapy...it was SO helpful for me. How old is your son?
You much be a very good mother to your son and a proud mother 🌹😎
I love Kayle so much you’re doing such a great job with him getting big hugs and kisses for me I know he doesn’t know many but it’s Tam again I keep up-to-date with all your information you’re so good to hear how he is going and yourself lots of love Tam
Thank you so much, Tam!! 🥰
What a great and informative video. Love the Q&A format.
Great video Kelly I myself get sad every time the conversation about my boys care when both their dad and I are gone I have 2 autistic boys 17 and 15 one which is non-verbal. Thank you for all the info.
HI Kelli and Kyle great video Kelli!!!!! I know how you feel Kelli about Kyle's future once he is 22. I'm 29 and I go to a special place called Alyssa Burnett Center in Bothell, Washington it's with Seattle Children's Hospital and Autism center in Seattle if you are curious there is a video on you tube and they have face book too. they have Music Classes, art, Disney, Zumba and etc. you are such an amazing mom to Kyle supermom!!! I always love watching your video's Kelli! And Go Kyle Go love you buddy😀😀😀😄😄😍😍💖💖💖💖💖💖💖💖💕💕💕💜💜💜💜💐💐💐💐💐💐💐
Thank you so much for sharing! It sounds like a fun and lovely place and I'm glad you get to be somewhere you enjoy!
Thank You Kelli you don't know how much it means to me/ a relief to hear at a point I felt guilty to feel grief when we got my son's diagnosis for Syngap1 to the point i never spoke of it.
I appreciate the videos because I can finally say we are not alone
Hi, Jazmin. I can relate, also. Our son, who is now 14, was diagnosed with Syngap1 two years ago. I went through a length grieving process, which lasted almost 10 years. I finally began to accept and move forward, although I still have my moments. I agree with you in that it's so relieving to know there are other families experiencing the same disability and situations that come along with it.
You are definitely not alone, and I know how you feel. In the early years, I tried to keep it all inside and felt guilty, but no more! Counseling helped me, as well as journaling and eventually sharing with others. I came to a place of acceptance but still cycle through the stages of grieving at times, which is completely normal. Hugs! ❤️
SRF just has a wonderful presentation by syngap1 mom of adult daughter on behaviors and care. She went over options for care in home and out of home after 18yo. Perhaps if would be helpful. My daughter is only 4 but I found it helpful. Maybe you can get some tips from it as well, if you didn’t already :) thank you for doing what you do! Syngap1 awareness and engagement is a key to cure.
Thank you for sharing this! I just started listening to that presentation yesterday and I'm about halfway through so far. Yes, she shares great information! Here's the link for anyone interested: ua-cam.com/video/rWJw7XtdQyY/v-deo.html
Kelli, I have so much respect for you..you are a wonderful loving mother and I love how you did this video…I am in my late 60’s . I grew up as the youngest of 4 girls. My oldest sister who is 7 years older than me has a rare form of epilepsy. She has daily seizures..some are strong and some are light ones…they are random and can be without warning. As a younger sister ….it was hard for me to be comfortable when we were in public because I was always nervous she was going to fall and hurt herself and other people can be harsh…she is also mentally challenged although she can speak ..write. And read. She is still living and lives with my other sister who lives walking distance from me.. we take good care of her as you do Kyle…it is a hard life, but there are beautiful times too as you said…. I wish I could give you all a big hug because I understand all the emotions that go along with raising a special need child…Kyle is so fortunate he has such a wonderful family around him. I love your story🥰🙏🙏🙏🙏🙏🙏🙏
Thank you so very much for your comment and sharing your experience with me. I've got tears in my eyes... It's always so nice to know when others can relate. ❤️
Hi, thank you for talking about diapers. Which ones do you use for Kyle
Tranquility All Through the Night Disposable Briefs. I mention them in my first Q&A video as well
I have another question. How do you help him with age appropriate interests and does he have any?
I'll add this to my next Q&A!
Hi, Kelli. Thanks for sharing. It's almost as if you were describing my family :) Are you able to share the school that Kyle is attending? I think I heard you say that it is a school for special needs. We pondered and prayed about taking Jackson out of public school (self-contained classroom) and sending him to a special needs school, but decided against it. As you know, we are now homeschooling, but will reconsider his school situation in the future. Thanks again!
I'll email you the name of Kyle's school. Kyle attended our public school his first grade year but it just wasn't the right fit and instructional design for him. We use the Ohio Autism Scholarship to pay for him to attend a private school for children with Autism and other special needs. He's been attending there since 2014 and we love it! Small class sizes, individual attention, year-round model, etc.
Great loving Mom, Kelli! 😇
You are so brave & inspiring, helping SO many families to not feel alone and believe that they can do it all ❤️. You have such a beautiful family and wonderful content that is so comforting and as a special needs mommy myself, it is so important.. ✨ you go momma ! 👏🏼🦋
Aww, thank you for your kind comments! I'm so glad I can be of some help! ❤️
I love watching how you and your family bring awareness to this disorder (I hope that I used the terminology right), he always brings a smile to me seeing how he has made a lot of gains!!!! You, your husband and his sister have been showing your true love for him and to each other!!!!! I also know that it hasn’t been easy but you are an amazing family!!!! I love how he gets excited!!!! Much love to you and your family!!!!
Thank you so much for taking the time to leave this message. ❤️ I appreciate it! 🥰
I am registered blind and one of my eye conditions is nystagmus. I really struggle with depth perception and change of flooring. Mine seems to be worse when I am tired.
I think Kyle's might be worse when tired, too.
Omg you are doing a great job with him its tam I love you both playlist such a wonderful boy and you’re such a loving mother you do such a great job got bless
Hi Kelly and Kyle, what does Kyle like to eat most? My son who are severe autism and other disabilities likes to eat cheese crisps which are keto friendly and he loves them and he also loves cream of wheat which somehow my mom found keto friendly as well. He also loves any kind of something it’s very crunchy and crunchy think he’ll eat it. Should I have is what is Kyle‘s favorite drink my son will drink chocolate milk every day if you let them this kid loves chocolate milk that is a big favorite.
I'll include your questions in my next Q&A video. I'll have to look into this keto friendly cream of wheat!!