Freya can communicate so good, she makes eye contact, shows with her hands what she want, crawls to things she want, smile when she is happy, looks sad when she didn't likes something. She is soo cute and smart. And Freya gives a lot more than a baby.! Greetings from Germany ❤❤❤❤❤❤
@@Freyasluckyarm Have you considered getting Freya a johnny jump-up or maybe a baby walker to help build up the muscle in her legs? It could also help with teaching her balance
@@evaklaassen4907 ... I must have missed the older video then. She has posted a video today making excuses about how she don't make Freya use her gait trainer because Freya don't like it. Girl sometimes you gotta make kids do things they don't like to do. Even if they are a special needs child. That's life. In my opinion she way over coddles Freya. To the point of almost neglecting the other three children . It's just my opinion so take it as such. Good, bad, or indifferent. Also in my opinion Freya is a beautiful well loved ( if over coddled) little girl. And I wish only the best for her. Again just my opinion so take it as such.
I respect & admire how you educate us about Cdls and how you incorporate all of your family into your videos. You never make the videos about you. Your family is fortunate to have a caring Mother like you.
Talking to the child is so important! I occasionally hear the Talking about and I cringe... occasionally call them out on it... but I am not good at that...knowing when it is appropriate or just making it worse.
Hi Family, Hope all is well. I worked at in a Hospital for 35 years before retiring. You are right about talking to a Disabled person directly. They appreciate being included in conversation’s even if they are non-verbal. I enjoyed your video today. I. Hope you guys have a great day. See you tomorrow. Love, me 💋💗🙋🏼💕❤️
Talking directly to a person with a disability or even just ill, is in my opinion very important. It does not matter if they cannot respond verbally, a nod, a blink, a squeeze of my hand all tell me that they know I am there for them. Thanks Marci for this informative video, I hope lots of people watch and take your advise on board. Prayers for Freya and her teething aches to lessen.
I think you're a wonderful Mother!! You have taken the time to educate your family and yourself and the public. I agree with what you said. Mostly when it comes to communication with the person who has the disability. Thank you for sharing 😊 I enjoy watching all of your videos. Take care and be well 💕
I know people have alot of questions but I feel you cover the bases on everything your kids do so really I have no questions you usually answer them in your videos without asking
Marcie, I just wanted to thank you for the video. I recognize so much of what you say. So I have a syndrome myself. (It is mild, but still) Totally different from Freya, and they didn't find out for me until I was 15. So I didn't get what you say in the video.Not being invited to parties because you are different. That hurts a lot. And participating in activities is so important. I was very introverted as a child because I was bullied quite a bit and I didn't know how to express myself at all. As an adult it is still difficult. I have to do with folders. Because people still don't understand why I act the way I do, and having to keep telling everything is very tiring indeed, and they often don't understand half of it either. The reason why I went to see you is because I wanted to know how you are handling this situation, and also because I recognize a lot. For the same reason I also follow Sebastian. And out of sheer interest. I wanted to say keep up the good work you are doing ❤❤❤❤❤❤
Marcy....you always have such wonderful advice and so informative. Your family is so beautiful. Freya is such a beautiful soul. I know that our Lord has his loving arms around all of you. Your family is so loving and share everything with one another. God bless
Thanking you for always taking the time to educate us as your viewers who don’t have experience with a child with disabilities. I can only speak for myself but I absolutely overthink so this is extremely helpful 🙏🏽 Poor teething girlie 🥺 I obv don’t remember what teething felt like lol but any sort of moth discomfort is the worst! I don’t know if you would know this but I have wondered if with her sensory processing issues does pain feel amplified? Like not that she feels more pain per say, but almost like the sensory overload of feeling discomfort? I have no idea if I’m asking this correctly or if it makes sense lol
It might bother her more because of the sensory processing. Her OT says that may be part of the eating problem because when you chew different things it feels different and sounds different and there is pressure on the teeth.
@@Freyasluckyarm ahhh okay that makes a lot of sense! And other than her EOE causing the issues swallowing, it would make sense why she would like to let things sit in her mouth before chewing so it can get soft making it easier for to enjoy the taste. There are still certain foods I eat differently because of my small scale sensory issues. And I CANNOT eat kettle chips. The sound and the feeling of the intense crunch is too much for me and then it’s all I can think about when I’m eating which makes me very irritated and then will then cause a random outburst (and sometimes just throwing the chips out no matter who is eating them - I have since learned to walk away and regulate lol) my boyfriend used to get so confused by my random outbursts like that 😂 proud of Freya for trying new foods! I was always like get those atomic crunch bombs out of my face immediately.
I'm so surprised that people wld ignore one of ur children. You have 4 kids 1 with a disablity . Having a disability doesn't make you any less of a human being. In my opinion it's ignorance. I don't mean that in a bad way. My belief is if I know you on a personal level n ur child has a disability I am going to educate myself on the disability so when I do talk to you I am more informed. I'm sure people aren't deliberately being ignorant on purpose I think they are nervous n don't no what to say. You are a wonderful mom to all ur kids and I think you do a fab job going with the flow. Freya is such a character. She will not let anything get in her way.
Another way to support is to treat a child with a disability just like any other child. My son has Cerebral Palsy and other disabilities but we treated him just like our other children.
The first time I heard about CDLS was when Chris with SBSK interviewed a family a little girl who has it. She was so cute!❤ She had limb differences in both arms. I also follow Sebastian's family. He's a cutie pie as well. Freya is so cute and sweet.❤
Freya is so beautiful! When she was in your arms, drinking her bottle and sleeping, the light highlighted her pretty hair, and she looked like a little angel!
I would absolutely love to see and talk to Freya! If we were to ever come that way for Vacation I would love to meet that little cutie 🥰 My granddaughter would dread gymnastics too but she loved it when she was there. I loved seeing a short video of you talking about Freya going to school and she was so excited, it was wonderful ❤
I love seeing and hearing about all your kids they are all adorable and amazing.. I dont just keep taps on your channel just for Freya but your family.. I have learned so much about cdls from your page but its also good to see how her siblings are with her...
Certain things I skipped out on mainly to much walking to much work for my lungs. Hope Freya is having a good summer and good luck with her growing teeth.
Hi Jessie,we could have done with this advice at the time when the grandchildren were smaller it was so hard as one child was without differences and she craved attention negative or not as the two children with heart issues were being tube fed they were too weak to suck on a bottle etc. The regular child would scream loudly and be difficult deliberately. It was stressful for everyone.
I'd like to mention something that, while rare, is still a reality. I have encountered parents who SERIOUSLY do not want to discuss it. I ask how the child is doing and they quickly snap back "He's fine." and move on to other topics. He's fine, and yet he's never available for anything he's invited to no matter what accommodations are offered. The gentlest suggestion is met with "Don't you think we tried all that?? Clearly, it's a situation where the parents are having a tougher time than the child and the only thing I could think to do was back off. Now I don't even mention him unless they bring him up first and it's heartbreaking. When you want to support but they just won't let you. If you have any advice on that, my ears are open.
That is hard. I do understand being completely overwhelmed with “advice” when you are just trying to stay afloat. I would just follow their lead. Maybe ask non medical questions about him. More general how is he.
I love this video. People don't think about things like this. Personally, I love Freya and your family. I think she is the cutest little person around. I have a friend who just lost her daughter to Mld. I supported her, and of course, Momma. It breaks my heart to know there is no cure for MLD. I keep hoping Freya will live a long life. Love to all ❤❤❤
These are good ideas. I am disabled and have to use a power chair. I have had people come talk to me about insurance or something like that and if I have someone here they will look at that person more than me. That is irritating.
I would absolutely love to live close to you guys just so I could come up and talk to Freya! I just LOVE that precious little smile she always gives! Can melt a heart!!!❤❤🙏🙏🙏❤❤
Great information. I remember those days with the teething, Leia had a hard time with teething she has CdLS also. Thanks, Marci for the information and thoughts. Margaret
I hear teething with cdls is awful because it takes so long for the teeth to grow. That hasn’t been our experience until now. These are taking so long!
@Freyasluckyarm yes, their baby teeth are much smaller, so sometimes their permanent teeth don't fit, and then the teeth can't fit and then teeth come in crooked and then some maybe pulled we went through all that. The whole teeth situation is really hard for our kiddos.
Good grief I need your children to teach this Grammy about computers. Lol. I think all your kids are special in their own ways. I love your whole family. You guys are wonderful ❤
Hey Freya- Your mama is the bomb! What a cool video to help all of us be a better friend to families who have a member with a disability. Such great ideas! I love watching Freya grow and learn. But ,most of all, I love her smiles! Hugs to your fun family! ❤
Those were great ideas Marci. My Autistic grandson has been excluded from activities and its so hurtful to his Mom. Knowing you have people who are supportive and who really care is so uplifting. I love your videos. You voice is so soothing. I love watching your relationship with your kids. So heartwarming! It brings me back to when mine were young! ❤
Hi so enjoyed your thoughts tonight your so good at putting your points across and your feelings. I agree with you 💯 talking to the child is so important. Your an amazing mum love and hugs from across the pond. ☘️☘️☘️🥰
Hi Marci and family! Those are some really great ideas, thank you for sharing! 🥰 I find myself looking forward to seeing you and your beautiful family, sometimes you just make my whole day! 😍 One thing that I have always done is if you see people with non-typical kids out in public, don't be shy, share a smile, say hi to the family, and do speak directly to a disabled child. Some kids may not have language abilities but they are able to communicate in so many other ways. Have you ever had to take the Briggs Meyers test for work or anything? I did, I was labeled strongly as "the includer". I cannot stand to ever see anyone left out of any situation for any reason. 🤩 I hope that Freya is feeling better, such a sweet video of her sleeping on your lap. I hope you got to spend some good quality time with Liam, Fiona, and Jesse.
While sometimes we do see her communicate, I'm sure it's nowhere on the level that you and rest of the family can...when I started watching Sebastian's and Stephanie's vlog...I immediately went to the foundations website to read about the syndrome. When I come across something I know nothing about, I have to read asa much as I can. One thing I wanted to do was send in the month of October, what Freya's birthdate is and donate funds on that month. Now it wouldn't be more than 25.00, I figure any amout would be accepted. Let me know what you think Marci, and Thanks!!!❤❤❤❤❤❤😂😂😂😂😂😂
@@Freyasluckyarm well you may prove helpful...I emailed aome director,but she never got back with me. These donations are only going to be like 25.00...I give that to my great nephew, when Sebastian and Freya reach their teens it'll be more...provided I'm still here...lol, anyway the donations will be in their name.
Freya can communicate so good, she makes eye contact, shows with her hands what she want, crawls to things she want, smile when she is happy, looks sad when she didn't likes something. She is soo cute and smart. And Freya gives a lot more than a baby.! Greetings from Germany ❤❤❤❤❤❤
I agree
@@Freyasluckyarm Have you considered getting Freya a johnny jump-up or maybe a baby walker to help build up the muscle in her legs? It could also help with teaching her balance
@@sandrabrott8580 I saw a older Video, with Freya in a walker
@@evaklaassen4907 ... I must have missed the older video then.
She has posted a video today making excuses about how she don't make Freya use her gait trainer because Freya don't like it.
Girl sometimes you gotta make kids do things they don't like to do. Even if they are a special needs child.
That's life.
In my opinion she way over coddles Freya. To the point of almost neglecting the other three children .
It's just my opinion so take it as such. Good, bad, or indifferent.
Also in my opinion Freya is a beautiful well loved ( if over coddled) little girl. And I wish only the best for her.
Again just my opinion so take it as such.
I respect & admire how you educate us about Cdls and how you incorporate all of your family into your videos. You never make the videos about you. Your family is fortunate to have a caring Mother like you.
Thank you so much
Talking to the child is so important! I occasionally hear the Talking about and I cringe... occasionally call them out on it... but I am not good at that...knowing when it is appropriate or just making it worse.
Hi Family, Hope all is well. I worked at in a Hospital for 35 years before retiring. You are right about talking to a Disabled person directly. They appreciate being included in conversation’s even if they are non-verbal. I enjoyed your video today. I. Hope you guys have a great day. See you tomorrow. Love, me 💋💗🙋🏼💕❤️
Freya understands you can see how she interacts! She is very normal❤❤❤for sure!
Talking directly to a person with a disability or even just ill, is in my opinion very important. It does not matter if they cannot respond verbally, a nod, a blink, a squeeze of my hand all tell me that they know I am there for them. Thanks Marci for this informative video, I hope lots of people watch and take your advise on board. Prayers for Freya and her teething aches to lessen.
I think you're a wonderful Mother!! You have taken the time to educate your family and yourself and the public. I agree with what you said. Mostly when it comes to communication with the person who has the disability. Thank you for sharing 😊 I enjoy watching all of your videos. Take care and be well 💕
I know people have alot of questions but I feel you cover the bases on everything your kids do so really I have no questions you usually answer them in your videos without asking
Jessie is adorable
Marcie, I just wanted to thank you for the video. I recognize so much of what you say. So I have a syndrome myself. (It is mild, but still) Totally different from Freya, and they didn't find out for me until I was 15. So I didn't get what you say in the video.Not being invited to parties because you are different. That hurts a lot. And participating in activities is so important. I was very introverted as a child because I was bullied quite a bit and I didn't know how to express myself at all. As an adult it is still difficult. I have to do with folders. Because people still don't understand why I act the way I do, and having to keep telling everything is very tiring indeed, and they often don't understand half of it either. The reason why I went to see you is because I wanted to know how you are handling this situation, and also because I recognize a lot. For the same reason I also follow Sebastian. And out of sheer interest. I wanted to say keep up the good work you are doing ❤❤❤❤❤❤
Thank you so much! It can be so hard not to be included. As a child and an adult. What a better world we would live in if people included everyone.
@@Freyasluckyarm Amen
Thank you, this is helpful. People always try and avoid an uncomfortable situation instead of finding a solution.
Glad it was helpful!
Marcy....you always have such wonderful advice and so informative. Your family is so beautiful. Freya is such a beautiful soul. I know that our Lord has his loving arms around all of you. Your family is so loving and share everything with one another. God bless
💝💝💝💝💝💖💖💖💖💖
It was so cute when you tried to weigh her. It is great she was 21 lbs.
Oh man she loves those buttons
Sorry you're having a hard time with your new teeth coming in! Hey, Marci, try offering her a chilled teething ring that you keep in the fridge.
Thanking you for always taking the time to educate us as your viewers who don’t have experience with a child with disabilities. I can only speak for myself but I absolutely overthink so this is extremely helpful 🙏🏽
Poor teething girlie 🥺 I obv don’t remember what teething felt like lol but any sort of moth discomfort is the worst! I don’t know if you would know this but I have wondered if with her sensory processing issues does pain feel amplified? Like not that she feels more pain per say, but almost like the sensory overload of feeling discomfort? I have no idea if I’m asking this correctly or if it makes sense lol
It might bother her more because of the sensory processing. Her OT says that may be part of the eating problem because when you chew different things it feels different and sounds different and there is pressure on the teeth.
@@Freyasluckyarm ahhh okay that makes a lot of sense! And other than her EOE causing the issues swallowing, it would make sense why she would like to let things sit in her mouth before chewing so it can get soft making it easier for to enjoy the taste.
There are still certain foods I eat differently because of my small scale sensory issues. And I CANNOT eat kettle chips. The sound and the feeling of the intense crunch is too much for me and then it’s all I can think about when I’m eating which makes me very irritated and then will then cause a random outburst (and sometimes just throwing the chips out no matter who is eating them - I have since learned to walk away and regulate lol) my boyfriend used to get so confused by my random outbursts like that 😂
proud of Freya for trying new foods! I was always like get those atomic crunch bombs out of my face immediately.
I can see how kettle chips could do that. I don’t enjoy them that much either. Too crunchy
I'm so surprised that people wld ignore one of ur children. You have 4 kids 1 with a disablity . Having a disability doesn't make you any less of a human being. In my opinion it's ignorance. I don't mean that in a bad way. My belief is if I know you on a personal level n ur child has a disability I am going to educate myself on the disability so when I do talk to you I am more informed. I'm sure people aren't deliberately being ignorant on purpose I think they are nervous n don't no what to say. You are a wonderful mom to all ur kids and I think you do a fab job going with the flow. Freya is such a character. She will not let anything get in her way.
Another way to support is to treat a child with a disability just like any other child.
My son has Cerebral Palsy and other disabilities but we treated him just like our other children.
Great insights, thanks for sharing ❤
Thanks for watching!
The first time I heard about CDLS was when Chris with SBSK interviewed a family a little girl who has it. She was so cute!❤ She had limb differences in both arms. I also follow Sebastian's family. He's a cutie pie as well. Freya is so cute and sweet.❤
Yes I have seen that one as well. A lot of kids with cdls have limb differences in both limbs
I saw SBSK with that little girl too
Freya is so beautiful! When she was in your arms, drinking her bottle and sleeping, the light highlighted her pretty hair, and she looked like a little angel!
I thought it was a beautiful moment.
I would absolutely love to see and talk to Freya! If we were to ever come that way for Vacation I would love to meet that little cutie 🥰 My granddaughter would dread gymnastics too but she loved it when she was there. I loved seeing a short video of you talking about Freya going to school and she was so excited, it was wonderful ❤
She misses school so much. About a month left before she gets to go back
@@Freyasluckyarm God love her I’m so happy she loves it, you can tell by how excited she was!
I love seeing and hearing about all your kids they are all adorable and amazing.. I dont just keep taps on your channel just for Freya but your family.. I have learned so much about cdls from your page but its also good to see how her siblings are with her...
Thank you so much!
I like to meet with you and your family but I live in Nebraska that is far away and freya
Certain things I skipped out on mainly to much walking to much work for my lungs. Hope Freya is having a good summer and good luck with her growing teeth.
Those are great suggestions! Thanks for educating us about special needs topics (not only CDLS).
Hi Jessie,we could have done with this advice at the time when the grandchildren were smaller it was so hard as one child was without differences and she craved attention negative or not as the two children with heart issues were being tube fed they were too weak to suck on a bottle etc. The regular child would scream loudly and be difficult deliberately. It was stressful for everyone.
I am interested to know why it is called a lucky.arm ?
We have a full video on this. But basically my kids started calling it that just like Nemo has a lucky fin
I'd like to mention something that, while rare, is still a reality. I have encountered parents who SERIOUSLY do not want to discuss it. I ask how the child is doing and they quickly snap back "He's fine." and move on to other topics. He's fine, and yet he's never available for anything he's invited to no matter what accommodations are offered. The gentlest suggestion is met with "Don't you think we tried all that?? Clearly, it's a situation where the parents are having a tougher time than the child and the only thing I could think to do was back off. Now I don't even mention him unless they bring him up first and it's heartbreaking. When you want to support but they just won't let you. If you have any advice on that, my ears are open.
That is hard. I do understand being completely overwhelmed with “advice” when you are just trying to stay afloat. I would just follow their lead. Maybe ask non medical questions about him. More general how is he.
Marcie you are the hub of your family wheel. I admire how you are so dedicated with your children.
Yes I am! Thank you so much. They are a joy
Hey Jessie I always wanted to topple when I was a little girl, well done!
I love this video. People don't think about things like this. Personally, I love Freya and your family. I think she is the cutest little person around. I have a friend who just lost her daughter to Mld. I supported her, and of course, Momma. It breaks my heart to know there is no cure for MLD. I keep hoping Freya will live a long life. Love to all ❤❤❤
Thank you. I hope she gets a long life as well
These are good ideas.
I am disabled and have to use a power chair. I have had people come talk to me about insurance or something like that and if I have someone here they will look at that person more than me.
That is irritating.
That is so irritating! I’m sorry you are treated that way
Great tips for supporting anybody!
Absolutely!
love freya's smile, does she sleep good at night? if that is ok to ask?
She sometimes has trouble falling asleep but usually will stay asleep once she does.
I would absolutely love to live close to you guys just so I could come up and talk to Freya! I just LOVE that precious little smile she always gives! Can melt a heart!!!❤❤🙏🙏🙏❤❤
Great information. I remember those days with the teething, Leia had a hard time with teething she has CdLS also. Thanks, Marci for the information and thoughts. Margaret
I hear teething with cdls is awful because it takes so long for the teeth to grow. That hasn’t been our experience until now. These are taking so long!
@Freyasluckyarm yes, their baby teeth are much smaller, so sometimes their permanent teeth don't fit, and then the teeth can't fit and then teeth come in crooked and then some maybe pulled we went through all that. The whole teeth situation is really hard for our kiddos.
You are doing a wonderful job❤
Thank you so much 😀
make-up looks great Marcie!
Thank you!
Good grief I need your children to teach this Grammy about computers. Lol. I think all your kids are special in their own ways. I love your whole family. You guys are wonderful ❤
Excellent suggestions! This all includes kids in wheelchairs too! They often feel so ignored. Thanks Marci! 😘💕
Very well said. ❤️
Hey Freya- Your mama is the bomb! What a cool video to help all of us be a better friend to families who have a member with a disability. Such great ideas! I love watching Freya grow and learn. But ,most of all, I love her smiles! Hugs to your fun family! ❤
I would love to have a convo with Freya..we would talk sesame street and all the new toys on the market..and ofcourse fave snacks!! 🥰💝
Those were great ideas Marci. My Autistic grandson has been excluded from activities and its so hurtful to his Mom. Knowing you have people who are supportive and who really care is so uplifting. I love your videos. You voice is so soothing. I love watching your relationship with your kids. So heartwarming! It brings me back to when mine were young! ❤
Thank you so much!
Hi so enjoyed your thoughts tonight your so good at putting your points across and your feelings. I agree with you 💯 talking to the child is so important. Your an amazing mum love and hugs from across the pond. ☘️☘️☘️🥰
Thank you so much!
Hi Marci and family! Those are some really great ideas, thank you for sharing! 🥰 I find myself looking forward to seeing you and your beautiful family, sometimes you just make my whole day! 😍 One thing that I have always done is if you see people with non-typical kids out in public, don't be shy, share a smile, say hi to the family, and do speak directly to a disabled child. Some kids may not have language abilities but they are able to communicate in so many other ways. Have you ever had to take the Briggs Meyers test for work or anything? I did, I was labeled strongly as "the includer". I cannot stand to ever see anyone left out of any situation for any reason. 🤩 I hope that Freya is feeling better, such a sweet video of her sleeping on your lap. I hope you got to spend some good quality time with Liam, Fiona, and Jesse.
I haven’t taken that test. I wonder what I would be?
@@Freyasluckyarm It is a fun test to take. If you do take it, please let me know what you get.
While sometimes we do see her communicate, I'm sure it's nowhere on the level that you and rest of the family can...when I started watching Sebastian's and Stephanie's vlog...I immediately went to the foundations website to read about the syndrome. When I come across something I know nothing about, I have to read asa much as I can. One thing I wanted to do was send in the month of October, what Freya's birthdate is and donate funds on that month. Now it wouldn't be more than 25.00, I figure any amout would be accepted. Let me know what you think Marci, and Thanks!!!❤❤❤❤❤❤😂😂😂😂😂😂
Thank you that is amazing. Any amount helps the foundation support families and individuals with cdls. Freya’s birthday is in august
@@Freyasluckyarm well you may prove helpful...I emailed aome director,but she never got back with me. These donations are only going to be like 25.00...I give that to my great nephew, when Sebastian and Freya reach their teens it'll be more...provided I'm still here...lol, anyway the donations will be in their name.
Thank you so much