Marci, any rherapist should always consider your input. As Freya's Mom, you know her best, her likes and dislikes. Your input is invaluable. I'm glad the appointment went well and hope this moves quickly. Freya deserves every opportunity to grow in all areas. ❤
You will always be your children’s best advocate. As a retired elementary school teacher, I have always believed that and listened to the parents/guardians. I love your videos!!
Bless you, it sounds like a constant battle to get what your little sweetheart needs. I love how you advocate for her so well. Hopefully, things will progress a bit quicker now 🤞 ❤
Hi Marci! Thank you for the video. It’s interesting to see Freya and the therapist working together. I hope we can see more future appointments with her. I’ve missed videos and am trying to catch up. My Dad passed last week and it’s been hard. My life equilibrium has been upended. But, watching your videos is helping. Thank you ❤️
Now one would think that a speech therapist would see this patient and be challenged with both Freya and the AAC device. Isn't that what they train for? I do believe that one of the big hurdles was cleared...Freya liked her. Majorly important! I really hope that if needed, that insurance will pay, but these days who knows! If I were a speech therapist I would rely heavily on Moms input! Oh well, have a great day and much love from Eastern TN! ❤❤❤
Hi Marci, SLP here. Just want to say first of all that you have an amazing family and you do an amazing job! As for the speech therapy, it shouldn’t matter if your SLP doesn’t know a lot about Freya’s diagnosis-the main thing is knowing what to do with any nonverbal child. In my state (WV) we have a leading program that will loan all types of AAC devices to families to let them try them out-maybe you have something similar. I personally start with lower tech devices that have 1-2 pictures on a page, one of them being something highly desirable to the child. Freya will still be working on spoken language because you’re going to be saying the words over and over providing the language models. Best of luck with speech therapy!
Marcie you and all your family are so kind and patient and I love your parenting style with all your kids. Im sure they will all become amazing adults. And although im sure its not always easy with Freya's syndrome im pretty sure it will only foster understanding and empathy as a result in your family and those in your circle and beyond.
I hope that goes/ went well and that you are able/have seen the assessor. I think that the attitude and personality of the person is a very important part of the equation, so you're off to a good start with her.
Is it possible for you to find an SLP who is an augmentative communication expert? They’re usually specially trained SLPs who would know to best choose the device and the program best for Freya.
Aw. I recognize what you are saying. I have had that in life too. No one knows what you are talking about and that is frustrating. I really hope you will benefit from it.
I do the same as you, I always take leaflets with me when I have to go to a new care provider. Because when I say: I have 22q11. Then they look at me, like, what is that?. And I don't feel like explaining everything again every time, so I understand you very well. At times like these, foundations are very useful.
Marci, I don’t know anything about this, but I always see the ads on TV about the Shriners. It talks about getting wheelchairs and other items for children who need them. Have you ever looked into this? I wonder if the help is only available for children without insurance, but you could see. I look forward to your videos, and love to see what you and the kids are up to!
We would like to have our insurance pay for it if we can and leave those programs for those that can’t. If for some reason we can’t get it approved we will then look at that
I feel like they should not have a communal ACC device unless it's a trial device like you're trying to figure out your child would even benefit from one or if this would be good for them because this is essentially your child's voice and it would be very weird to let other people use your voice or your kids voice but then again I'm not a speech therapist so what do I know
Marci all the best of luck I underwent speech Therapy in elementry school this was because I was intabated as a baby and when I got older I developed a delay I think I'm not sure as an adult its completly gone
Does Freya still use the buttons you had around the house for bath, milk, and snacks? So glad you and Freya like her therapist, that always helps makes visits more enjoyable and not a uncomfortable time. Freya is getting around in her car better❤ I love her giggles so much ❤ 🙏 the device goes smoother and faster than the wheelchair; I’m also praying the wheelchair process picks up.
Thank you so much. Everything seems to be a very slow process no matter how we think it will go. She still uses the buttons although the tub button is broken. We need to get a couple more for around the house.
@@Freyasluckyarmwow I know it takes forever it’s so frustrating. I’ve been waiting for a molded seating system for almost nine months. The fight for DME equipment is outrageous.
Both myself and my daughter have an extra chromosome as I’ve got pheudopheudohypoparathyroidism PPHP for short my daughter has just PHP it’s a rare condition
Can you make an appointment at the Mayo Clinic or another research based hospital? You live in a small town. Truth is your hospitals are not going to attract the best of the best. Seems like you are often spinning your wheels. I find it shocking that this speech therapist has never filled out a request for an AAC device before.
I can. We have a children’s hospital about 4 hours away that is a good resource, but it requires travel and that is hard to coordinate with all the kids. Especially something for speech that requires multiple visits. We do it when necessary but try to do it as little as possible.
Marci, any rherapist should always consider your input. As Freya's Mom, you know her best, her likes and dislikes. Your input is invaluable. I'm glad the appointment went well and hope this moves quickly. Freya deserves every opportunity to grow in all areas. ❤
You will always be your children’s best advocate. As a retired elementary school teacher, I have always believed that and listened to the parents/guardians. I love your videos!!
Yes! Thank you!
It was good to see the therapist playing with Freya. She is such a happy girl.❤❤❤❤
Thanks for the update Marci . It was a GREAT VIDEO and like always I love watching your videos HAVE A BLESS DAY TO EVERY ONE 🙏❤️🙏🥰🙏💜🙏💙👍!!!!
Bless you, it sounds like a constant battle to get what your little sweetheart needs. I love how you advocate for her so well. Hopefully, things will progress a bit quicker now 🤞 ❤
Thank you so much! It is a constant thing
Hi Marci! Thank you for the video. It’s interesting to see Freya and the therapist working together. I hope we can see more future appointments with her. I’ve missed videos and am trying to catch up. My Dad passed last week and it’s been hard. My life equilibrium has been upended. But, watching your videos is helping. Thank you ❤️
Oh I am so sorry. I lost my Mom 10 years ago and it does upend things. Love to you
@@Freyasluckyarm ❤️😘
You are hilarious! And spot on re: expectations, goals, and intervention techniques imo. Nice job
Now one would think that a speech therapist would see this patient and be challenged with both Freya and the AAC device. Isn't that what they train for? I do believe that one of the big hurdles was cleared...Freya liked her. Majorly important! I really hope that if needed, that insurance will pay, but these days who knows! If I were a speech therapist I would rely heavily on Moms input! Oh well, have a great day and much love from Eastern TN! ❤❤❤
Your a beautiful Mom Marci. Blessings to you and the Fam✨🌹🧸
Hi Marci, SLP here. Just want to say first of all that you have an amazing family and you do an amazing job! As for the speech therapy, it shouldn’t matter if your SLP doesn’t know a lot about Freya’s diagnosis-the main thing is knowing what to do with any nonverbal child. In my state (WV) we have a leading program that will loan all types of AAC devices to families to let them try them out-maybe you have something similar. I personally start with lower tech devices that have 1-2 pictures on a page, one of them being something highly desirable to the child. Freya will still be working on spoken language because you’re going to be saying the words over and over providing the language models. Best of luck with speech therapy!
We do have an AAC device on loan. We are trying to get her one of her own. Thank you
Keep fighting. It's an uphill battle sometimes. Remember, you know Freya best.
Marcie you and all your family are so kind and patient and I love your parenting style with all your kids. Im sure they will all become amazing adults. And although im sure its not always easy with Freya's syndrome im pretty sure it will only foster understanding and empathy as a result in your family and those in your circle and beyond.
Thank you so much
I hope that goes/ went well and that you are able/have seen the assessor. I think that the attitude and personality of the person is a very important part of the equation, so you're off to a good start with her.
Yes I agree
Freya is looking like she is growing, getting older and taller.
Glad it went well! As moms at the end of the day,we know what works best for our children.🥰
Good job 👏 Freya
I agree with you signing is communication I am legally deaf. I know sign it is definitely a language. The deaf use it all the time.
Yes it’s a complete language
Is it possible for you to find an SLP who is an augmentative communication expert? They’re usually specially trained SLPs who would know to best choose the device and the program best for Freya.
For that I would have to travel 4 hours. It just doesn’t make sense for the many appointments we would have to go to
I'm praying she gets the machine she needs. I want to play in the sand. Lol
#fanforlife❤
The CDLS office is about 15 miles from my home.
Really? That’s amazing.
Aw. I recognize what you are saying. I have had that in life too. No one knows what you are talking about and that is frustrating. I really hope you will benefit from it.
I do the same as you, I always take leaflets with me when I have to go to a new care provider. Because when I say: I have 22q11. Then they look at me, like, what is that?. And I don't feel like explaining everything again every time, so I understand you very well. At times like these, foundations are very useful.
Yes it is so helpful
Marci, I don’t know anything about this, but I always see the ads on TV about the Shriners. It talks about getting wheelchairs and other items for children who need them. Have you ever looked into this? I wonder if the help is only available for children without insurance, but you could see. I look forward to your videos, and love to see what you and the kids are up to!
We would like to have our insurance pay for it if we can and leave those programs for those that can’t. If for some reason we can’t get it approved we will then look at that
I feel like they should not have a communal ACC device unless it's a trial device like you're trying to figure out your child would even benefit from one or if this would be good for them because this is essentially your child's voice and it would be very weird to let other people use your voice or your kids voice but then again I'm not a speech therapist so what do I know
Marci all the best of luck I underwent speech Therapy in elementry school this was because I was intabated as a baby and when I got older I developed a delay I think I'm not sure as an adult its completly gone
Does Freya still use the buttons you had around the house for bath, milk, and snacks? So glad you and Freya like her therapist, that always helps makes visits more enjoyable and not a uncomfortable time. Freya is getting around in her car better❤ I love her giggles so much ❤ 🙏 the device goes smoother and faster than the wheelchair; I’m also praying the wheelchair process picks up.
Thank you so much. Everything seems to be a very slow process no matter how we think it will go. She still uses the buttons although the tub button is broken. We need to get a couple more for around the house.
Hi Marcy has there been any wheelchair updates lately? Great video as always see you soon.
Nope. None lately
@@Freyasluckyarmwow I know it takes forever it’s so frustrating. I’ve been waiting for a molded seating system for almost nine months. The fight for DME equipment is outrageous.
@@paulabarton9493 it is wild.
I hope Freya will be able to get an AAC device soon.
I think she has 1
Great video Marci but i thought Freya got 1 at home. I remember a video that was she got one and was using it at home
It is on loan from an organization. It is not ours to keep
@@Freyasluckyarm oh. Will she be getting one that she can keep soon
@@Bellakania520 that is what we are trying to do with the speech therapist. She has to fill out the paperwork for our insurance company
@@Freyasluckyarm I hope she gets one soon! I think she'll love being able to communicate with her "voice" and I bet you and Chris with too
@@Freyasluckyarm also quick question is Freya in special needs preschool or typical preschool with an aide with her
💜🌻
10:01 is that sawdust? It doesn't look quite like sand.
It was corn
Both myself and my daughter have an extra chromosome as I’ve got pheudopheudohypoparathyroidism PPHP for short my daughter has just PHP it’s a rare condition
Was Freya playing with beans? It didn't look like sand.
It was a corn pit T the pumpkin patch
Could her preschool get a grant for the device that's what they did for my nephew he has autism
I’m sure they could
💌
How could anyone say with a straight face that sign language ISN'T communication? 😂
I know!
hey guys
Good afternoon
Can you make an appointment at the Mayo Clinic or another research based hospital? You live in a small town. Truth is your hospitals are not going to attract the best of the best. Seems like you are often spinning your wheels. I find it shocking that this speech therapist has never filled out a request for an AAC device before.
I can. We have a children’s hospital about 4 hours away that is a good resource, but it requires travel and that is hard to coordinate with all the kids. Especially something for speech that requires multiple visits. We do it when necessary but try to do it as little as possible.
morning
tray not to be nurves tray to think positive