I pray that your conflicting emotions will be completely changed to joy. This little girl brings so much joy to people that don’t really even know her except through TH-cam. We love watching her. Her independent feisty nature will move her forward in development and she will do amazing things. God has a plan for her, just like He does your other children. They are a blessing to you and all of us!
I’m an orientation and mobility specialist (a type of service provided for children and adults with visual impairments) who’s currently working in a public school. I have multiple disabilities myself. I also have complicated feelings towards IEP goals, especially as I’m working on progress reports for my students as we speak. I understand why measurable IEP goals are necessary, especially for government funding and justification of why we need all these therapies in the first place. On the other hand, it’s so hard to quantify the progress our students make with numbers or percentages, and I feel like it’s such high pressure to always have a “goal” out of reach that our kids have to be striving for. Just know that often times when you’re looking at these percentages, they’re just best estimates based on observations, not absolutes. I know it’s tough. But all of our students (including Freya) are amazing, making progress, and trying their best. ❤
I’m a special needs teacher & in my opinion Freya is progressing well. She is able to watch her peers & learn from them which is very important! Don’t worry mom. She’s doing a great job,🎉😊
As a special educator for many years, who has written many IEPs and IEP goals, I can appreciate your video about Freya’s progress, I would celebrate all of my students little wins and progress because to me, they worked sooo hard for what they accomplished and I would feel as though it’s soo not fair that they have to work soo much harder than their non-disabled peers! I teach regular education students now, but I’ll always be a special Ed teacher at heart! ♥️ Those kids aren’t disabled, they are differently abled! Freya you were born to do amazing things and prove them all wrong, girl! 🎉 I can see Freya’s progress from just a few months ago in your videos! She’s more verbal, mobile, and is making more connections!
As a retired para, so well said MOM! I celebrate you! At the same time, my heart breaks for you. That said YOU ARE HITTING IT OUT OF THE PARK/ BATTING 1000🎉
IEP:pppfffffffftttt!! 100% adorable, 100% doing it in your time, 100% eating with a spoon all all by yourself, 100% pulling yourself into a standing position by yourself! 100% loved by everyone! Okay, that's my assessment LOL! I'm sure I could come up with more!! Love to all!! ❤❤❤❤❤❤😊😊😊😊😊😊
She started school late, she’s been out sick a little and she’s still 1/3 of the way to her goal with almost 40 days left of the 1/2 year!! Way to go Freya!
Beautifully said, Marci! I don't have a disabled child but your vblogs help folks like to gain insight. The world needs that in order to open hearts and minds which in term creates inclusiveness ❤
Since CDLS kids are differently abled, even among themselves, how in the world can Freya be "measured"?? You know best, Marci! Freya is doing so well! 🎉❤
She’s progressed so much since I started following you, as a suggestion from Sebastian’s mom Stephanie. The buttons, the self feeding, her reactions are all signs of her growth. My daughter didn’t fit any of the growth charts for her age. The reason? She was a 9 pound baby! She was bigger than most 1-2 month old babies 😂. Praying Freya continues to grow and blossom, it’s a joy to watch your family.
I feel your conflict. I am a grandma with 8 grandkids. Two have severe hemophilia. I grieved that. Then two were adopted from foster care and both have IEP’s - one for several learning disabilities, his brother for behavioral issues (ADHD and ODD). Accept that your emotions are a paradox. I watch Freya and see so much progress in her mobility. I am a retired clinical social worker and am so impressed with her evident happiness. The epilepsy is a kick in the pants, but you are handling it step by step, Marci. Freya is a determined kid. All just takes longer. Please hang in there.
I'm so very proud of cutie pie Freya.Everything she accomplishes is showing that she works hard. It doesn't matter if she is behind. She's learning, and that's what really matters. She has a wonderful family cheering her on! Everyone loves her so much!!! ❤
Hi Again, I hit the send by mistake. You explain yourself so clearly. Freya is so expressive in her face. I love watching her. Beautiful Girl. God Bless her and your wonderful family. What an adorable outfit Freya has on. So cute. Thanks for a great video today. See you tomorrow, love, me💋💗🧑🏼💻❤️💕
Thanks Marcie for being as natural as life is itself, and giving it all not only to your family but also to everybody who watches the way with little angel Freya..❤ God Bless❤
Hi Marcy - I so enjoy watching Freya and her development as well as your intentional parenting. Life is not filled with marks and how well you achieve things so I, as a teacher of young children, find it so disheartening for all parents to hear what their children have not achieved. Perhaps you could ask the school to leave out the 'marks' for each skill on your copy of her report, and to rather comment specifically on the skills she is achieving between each report session - ie: 'Freya is able to take 5 steps unaided in her gait trainer' - therefore highlighting actual achievements rather than focusing on where she maybe on some arbitrary scale. There is most certainly more going on in her brain than we can imagine - she just expresses it in her own way. Love to you all in this festive season xxx PS - I may try those chocolate stars!!
Marci, I am a firm believer in removing negativity from my life (and I am much happier for it) Ignore the IEP reports, why would you need to see them, you see Freya's progress every day and who is better placed to judge that progress than you? I have seen amazing progress in Freya in the last 6 - 8 months. Look how she's standing up on her own, climbing the stairs, eating food when she feels like it, and in the greater scheme of things, does it really matter if she doesn't get up and walk unaided? she can scootch around quickly and get where she wants to be. I know you had that setback with her seizures but they are under control now and she is a happy, healthy wee girl. I wish I could be there to give you a BIG HUG (but my arms would never reach across the Atlantic 🙄🙄) and tell you what an amazing job you are doing with your little charmer Freya, you encourage her and positively reinforce all the time to get her to her next steps. You got this. 💪💪😘😘
I think parents of kids with disabilities shouldn’t ignore the goals but it is all subjective. I think Freya will learn and grow at her own pace and some years it will be faster than other years but celebrating all her milestones is the key and you do that, Marci. I see that Freya understands so much more now and she is so happy most of the time. How do you quantify that? Your instincts are right on, Marci, because Freya’s growth won’t go to anyone’s schedule but her own. Go Freya, we love you! ❤️🇨🇦🙏
Oh Marci, I so much feel your pain. The 1st time I was told my child was not performing to the "standard" & needed an I.E.P., I was devastaded. But more so I was angry. This mother bear did NOT like someone else pointing out her child's flaws. The idea of an IEP is good in concept, but I think EVERY child should be entitled to one. Not to point out their weaknesses, but to recognize their strengths. EVERY child develops at different rates & in different areas. I did poorly in school. I was never diagnosed as dyslexic until my 2nd child was tested in Kindergarten. As they were explaining the results to me, one of the therapists saw the expression on my face was "So, what's wrong with that?". Then they changed their attention to me. She said "You can't do this either can you?". They worked with me and my son thru that school year. We both excelled. I went from a "dumb, slow" person to attending college & being on the Dean's Honor Roll EVERY semester. I'll never be an accomplished speed reader & 52 yrs later I still struggle with comprehension, but I do quite well. One of my children was reading at 3 1/2, one had excellent penmanship at age 2, another excells in math like me. One has an engineering mind, and can see how things work & can find solutions to a problem that other experts are stumped by. Yet another child can pick up any musical instrument and play nearly perfectly on her 1st attempt. We are all different with different strengths & weaknesses. Yes, Freya has her challenges with her special needs, but what a joy she is to so many people. Try not to fret over the fact that it takes 20 people to give her a positive preschool experience, but rejoice in the fact that she gave 20 people an opportunity to rejoice in her sweet spirit & celebrate her accomplishments!! Oh that we could all have a rooting section like that!!!❤ These people have chosen a career in this field & like other teachers reap more than they sow. Continue to be her advocate like you do with all your children. God trusted you with this special spirit, because He knew you are the best mom for her.
My daughter is on a IEP! I understand we’re you are coming from. My grandma was a special Ed teacher for over 20 years! It’s rough that we have to go 😊Fraye is a beautiful young girl!!
Hi,Marci I just saw your video of the EP goals. First of all your whole family is amazing. It’s amazing to see you, Chris,Ian, Jesse,Fiona interact with Freya. Freya is treated like a normal child instead of a handicapped child, and that’s why Freya is accomplishing those goals. Wheather she’s Slow or fast she is progressing wonderfully. Freya goals are our goals too. Freya is extremely blessed to have all of you guys. The love the kids have for her shows tremendously. I love your family and its happiness in my heart to see a video of your family. I love her simple responses and smiles. 😊Hugs and much love from Bradenton Florida ❤
My elder son had an IEP for speech from age 4 on. I never liked reading the reports because I felt instead of measuring his progress against himself they measured him against the “normal “ kids. All I needed to know was that he was learning and making progress not that he was so many years and months behind.
Support workers come and go, so records need to be kept in order to handover all information about the individual, so the support remains consistent. Parents receive a copy of these reports as a cutesy, but to put it simply the are used for legal accountability to justify current and ongoing future funding for your child. IEPs are what they, a plan of individual goals, that are specifically developed for your child. These goals are usually based on individual abilities with aim of further development in these areas. By law they need to be reviewed regularly, usually every 6 months -12 months Part of the review is a measurement of success. Goals can be rolled over to the next plan, they don't have to achieve every goal within the life a 12 month plan. These goals can be rolled over to the next plan and again be reviewed in the next 12 months. These goals are never measured against another individual's ability. This is the bureaucracy side of things, not a reflection of your child and their individual support needs.
For me as a 37 year diagnosed with autism without any intellectual disabilities and five other diagnosed disabilities outside of autism, I didn't have an IEP until 6th grade and I had it until I finished and graduated from 12th grade. The problem here is I didn't get help with executive functioning skills, learning how to make inferences known as reading between the lines, understanding abstract language and working on my weak auditory working memory in needed speech therapy. I also didn't get needed individualized OT (occupational therapy) and the needed individualized help I needed through the Lindamood-Bell program. Plus I ended up getting an unnecessary IQ test when I had to get updated accommodations through the Regents Center for Learning Disorders (RCLD) at GSU Atlanta Campus back in the Fall 2009 semester. I found in the Spring 2010 semester that this unnecessary IQ test stated I have a low normal IQ when in reality my IQ is higher than that.
Ignore the percent improvements on the IEP! My two boys have Asperger’s syndrome. I did 18 years of IEPs. The important part of the IEP report is the verbiage; that the child is trying, is happy, and continues to move forward at their own pace. No way can you guess how fast the child will accomplish a task, or if they will ever speak so others can understand, or whatever. Chuck the percent thing and revel in the words! (I also can’t eat gluten, so your food preparation is encouraging to me! ). Thanks for sharing.
As a retired elementary school teacher, I feel your feels. Every kiddo has individual needs, but I could not always feel these goals. Every single kiddo is individual, and these goals were moving targets. I told the families of every student of mine that the family was the best advocate. Please, please, please, follow your heart. Every kiddo is an individual. I was a Special Education assistant before I taught. It was wonderful to do this before I taught. I’m praying for you.
Your reaction makes total sense to me, Marci. Putting a number on development just can't reflect Freya's reality! Freya is downright amazing! I've helped develop IEPs, and it can be SO difficult to try to predict what ANY child will be doing in 6 months! Those numbers means she is doing extremely well, in my opinion! Your whole family is one heck of a team! 😉🎄😄🙏
Oh Marcie.... in your heart you know that sweet Freya is doing amazing. I am not speaking professionally nor through any personal experience.... but just from my heart. I'm sure the school has to put numbers down on paper but real life experience and how Freya is actually progressing has nothing to do with numbers on a chart. I am sure every child who has Freya's syndrome progresses differently.. so who are they comparing her to. And I know that you know this in your heart, and you are so proud of her, and you can see how far she has come. It's just disheartening opening up a letter that is showing a chart, that is just a bunch of numbers evaluating and grading her progress. Yes don't listen to it!!! I would feel the same way. You, Freya and your whole family are amazing and I am in awe with all of your videos showing her progress and how amazing you all are together. She is progressing nicely and has come so far and it just proves that everyday she progresses a little more. I can understand you feeling the way you do and I know you celebrate her achievements. God bless you all. Sending love hugs blessings and prayers. ❤❤❤.....Linda
My daughter had IEP's done when she was in first grade. She had to think about holding a pencil or scissors, we don't even think about cause we do it. I had to teach myself how to print left-handed cause her printing so bad. Good for you Freya, love hearing great news like that. Enjoy her so much, don't grieve of what she can't do celebrate the things she can. Yes I can be your Mom and your children fit in age wise with my grands.
I have worked in the disability sector for over 30 years and grief is very much part of living with a child with a disability. Each parent experience grief in their own way. The most important thing to remember is not to let grief get in the way of your child's development and progress. The support (20 workers) you have will enable your child to live THEIR best life, even if it isn't the best life you would wish for them. You are Absolutely correct, talk to your network of peers about your feelings, these are normal feelings. But you have a whole team working beside you...embrace and celebrate Freya's achievements you are doing amazing..👏
I like that you got the wooden shelves on the wall I want to do that in my kitchen after I paint and fix my house better I want to put likes all my spices on it on the wooden rack next to the stove
I can't say I understand exactly how you feel, but I know how us Moms are-- we want our kids to succeed and be happy. Freya definitely seems happy, and knows that she's loved. I saw her USE A SPOON - my husband was watching over my shoulder and said --she did it again! I saw her with you one second and STANDING at the piano tickling the ivories the next. I know you count your blessings and are grateful. I just want you to know the Peanut Gally is with ya 😉🥰
I don't know so I can't understand everything your going through but I'm listening and I heard you. ❤oh Nd congratulations on the li'l Debbie cakes!! Sale them!! I'll buy them!!
Congrats Freya! I wish Sebastian's mother would let go and send him to school, he is also capable of progressing. She won't always be there for him, he needs to learn as much as he can while still a child, he's almost half grown now.
She was waiting until after his surgery. Sebastian has had a lot of surgeries in his short life. He can’t be at school while having so many surgeries. I fully support Stephanie and the choices she makes.
I observed that his ENT was sort of negative about his attending school because of the Petri dish of germs. I suspect that since they were on the fence about it anyway 16:44 , Gio and Stephanie decided to wait.
Every thing she accomplishes is wonderful. Stay strong. I disliked all measures of accomplishment that we used to measure progress with every student. Stay the course sweet friend. You are her very best advocate.
Not confused! Big hugs and f I were on the same continent I'd be round for the gluten-free goodness. Incidentally I would like to know where you got the best Christmas jumper I have seen this year? Xxx
I agree with the tests and grades for disabled children. I tell my sons teachers that I don't care to know how behind he is, I would rather know about the improvements he has made towards his goals. The grades are not accurate of the progress.
Hi Marci Fraya” hope you are good.I’m not I fell at work in between the airplane and K loader My leg went all the way down through the plane and I got bruised up and hurt really bad so I’m dealing with this leg issue now. and tell Fiona Hope you are good. Liam is a great great kid. he’s going to be something really good when he grows up I can tell.Your kids are awesome I love. that you can sew clothes you’re like a miracle worker you can do anything you can cook. I love that you get your kids to cook I love that you have your own gardeN.Love watching you guys. I started watching you from Stephanie from Sebastian. I would’ve never had started watching you if it wasn’t for Sebastian
Congratulations on your achievements, Freya! You truly are an academic in how much you love school! Marcie - I'm curious. When you set goals for Freya, are they based on her accomplishing things as close as possible to able- bodied and typical children? Or do you create goals based on things that match more to her reality?Also, do you add goals that she will smash so she gets a couple of 💯? I mean she is so independent and communicative, it wouldn't be hard to add all kinds of things she's good at. They just might not look 'typical.' Thx so much for sharing. Your family is delightful and I'm learning a lot about what it's like to raise a child with a rare syndrome.
It is hard to we usually do goals that are next in line developmentally. So she was pulling herself up to standing we made a goal to stand independently for 5 seconds. The hard part is these goals can take a year or two, or no time at all. It’s hard to gauge where Freya will be.
@@Freyasluckyarm Thamks for the response! IMHO, your family is doing a fabulous job of raising Freya. She seems so happy and I can see how much she loves you back. From an onlooker's perspective, it seems like she is really speeding up with her development. She is so precious and a reminder that we should all live in the moment and do things that make us happy. God bless you and your family, Marcie. ❤ Nana Nikki
Your daughter is loved and you have got her interests at heart.......who cares about a stupid test? How many kids with a disability have no parents to support them and they are in foster care? She has her family's support and that is all she needs.
Your her Mom you know how she' developing so do we who watch her videos everyday she's picking up on learning something new she's still young as she gets older she'll develop how she wants to
I like them. But you have to watch and make sure they are staying on task. It's easy for the teachers to slack because it's work on the teachers. Don't care, it is the only way my son got through school. He's now doing quite well in life. He has adhd quite badly. It's a lot f work momma. Are her goals too high? Bring the goals down momma, you are in charge. ❤❤❤
I think I've commented something similar before, but to my untrained eye, she seems to be soaring! She FED HERSELF yogurt at school! I have a sneaky suspicion that she is getting you guys ready for so many new things. IEP who?
I’m against testing children full stop, all children develop at different rates. Our special children need inclusion where possible. The I.E.P is a judgemental piece of paper to prove that the profession is to justify their means. Freya is a very fortunate little girl who has a lovely family who are helping her reach her goals. You worked through those emotions really well, I’m not sure I could.
I'm certainly not Freya, so take this and draw from it what you will. I might have mentioned it, and there maybe kids in Freyas class with Spina Bifida. I grew up in the middle of nowhere east coast Canada and was one of two kids with a disability starting school. Essentially me and my cousin literally we're the reason challenging needs (what its called in Canada) we're introduced to that school. There is no such thing as segregated schooling for those with disabilities, except for those who are deaf or HOH and those who are blind here. I was halftime in special education and halftime integrated. Looking back now as an adult, the only reason for assistance at school should have been toileting. The assessments that happened when I was younger made me feel like a monkey being asked to perform tricks and the educational ones to assess my grade level were for a week outta time, 6 hour days, once a year. I hated it. I don't feel I benefited from it but was emotionally damaged because of it. All that to say, to hear the percents they gave Freya and the statements that they love her following didn't feel genuine but a way to soft the blow at how poorly they think she's doing. Don't get me wrong she's totally loveable, I love Freya and believe on some level they do. Ultimately, they want her at the same level as her age AKA a typical child. That's not realistic. By the end of grade 3, my first year in special education, I wanted to quit and hated school every day after. All I wanted to do was be in the regular classroom with the other kids. Kids fail subjects, it's not great, it's not an excuse, but it would have been preferable to special education for me.
@@Freyasluckyarm oh I know you do. I also know you would have let me fail over seeing me clearly miserable and pushing me anyway. Unlike Freya, I could tell when peoples tone didn't match their face and they weren't being honest. They knew I did and didn't mind making it clear how disappointed they were with me. It sucked on a whole new level!
After 45 yrs of caring for our special needs daughter , I can say I did not like IEP time.🤪 it really is about the gov. Regulations. Do what YOU think best and just smile , unless there is an expectation they are pushing for them ,then remember you are the parent♥️They mean well🥲
Freya is doing amazing! She’s feeding herself! I’m so proud of her!!!
I pray that your conflicting emotions will be completely changed to joy. This little girl brings so much joy to people that don’t really even know her except through TH-cam. We love watching her. Her independent feisty nature will move her forward in development and she will do amazing things. God has a plan for her, just like He does your other children. They are a blessing to you and all of us!
I’m an orientation and mobility specialist (a type of service provided for children and adults with visual impairments) who’s currently working in a public school. I have multiple disabilities myself. I also have complicated feelings towards IEP goals, especially as I’m working on progress reports for my students as we speak. I understand why measurable IEP goals are necessary, especially for government funding and justification of why we need all these therapies in the first place. On the other hand, it’s so hard to quantify the progress our students make with numbers or percentages, and I feel like it’s such high pressure to always have a “goal” out of reach that our kids have to be striving for. Just know that often times when you’re looking at these percentages, they’re just best estimates based on observations, not absolutes. I know it’s tough. But all of our students (including Freya) are amazing, making progress, and trying their best. ❤
I’m a special needs teacher & in my opinion Freya is progressing well. She is able to watch her peers & learn from them which is very important! Don’t worry mom. She’s doing a great job,🎉😊
Yeah I see her change in a really a lot she’s doing really good I’m proud of her
As a special educator for many years, who has written many IEPs and IEP goals, I can appreciate your video about Freya’s progress, I would celebrate all of my students little wins and progress because to me, they worked sooo hard for what they accomplished and I would feel as though it’s soo not fair that they have to work soo much harder than their non-disabled peers! I teach regular education students now, but I’ll always be a special Ed teacher at heart! ♥️ Those kids aren’t disabled, they are differently abled! Freya you were born to do amazing things and prove them all wrong, girl! 🎉 I can see Freya’s progress from just a few months ago in your videos! She’s more verbal, mobile, and is making more connections!
As a retired para, so well said MOM!
I celebrate you! At the same time, my heart breaks for you. That said YOU ARE HITTING IT OUT OF THE PARK/ BATTING 1000🎉
IEP:pppfffffffftttt!! 100% adorable, 100% doing it in your time, 100% eating with a spoon all all by yourself, 100% pulling yourself into a standing position by yourself! 100% loved by everyone! Okay, that's my assessment LOL! I'm sure I could come up with more!! Love to all!! ❤❤❤❤❤❤😊😊😊😊😊😊
I love it!
She started school late, she’s been out sick a little and she’s still 1/3 of the way to her goal with almost 40 days left of the 1/2 year!! Way to go Freya!
Beautifully said, Marci! I don't have a disabled child but your vblogs help folks like to gain insight. The world needs that in order to open hearts and minds which in term creates inclusiveness ❤
Since CDLS kids are differently abled, even among themselves, how in the world can Freya be "measured"?? You know best, Marci! Freya is doing so well! 🎉❤
She’s progressed so much since I started following you, as a suggestion from Sebastian’s mom Stephanie. The buttons, the self feeding, her reactions are all signs of her growth. My daughter didn’t fit any of the growth charts for her age. The reason? She was a 9 pound baby! She was bigger than most 1-2 month old babies 😂. Praying Freya continues to grow and blossom, it’s a joy to watch your family.
I'm glad to hear that Freya is doing so well!. I think that would be nice for yourself too! You can be proud of Freya
I feel your conflict. I am a grandma with 8 grandkids. Two have severe hemophilia. I grieved that. Then two were adopted from foster care and both have IEP’s - one for several learning disabilities, his brother for behavioral issues (ADHD and ODD). Accept that your emotions are a paradox. I watch Freya and see so much progress in her mobility. I am a retired clinical social worker and am so impressed with her evident happiness. The epilepsy is a kick in the pants, but you are handling it step by step, Marci. Freya is a determined kid. All just takes longer. Please hang in there.
Thank you so much.
I know how you feel, and that never goes away, sending big hug
I'm so very proud of cutie pie Freya.Everything she accomplishes is showing that she works hard. It doesn't matter if she is behind. She's learning, and that's what really matters. She has a wonderful family cheering her on! Everyone loves her so much!!! ❤
Hi Again,
I hit the send by mistake. You explain yourself so clearly. Freya is so expressive in her face. I love watching her. Beautiful Girl. God Bless her and your wonderful family. What an adorable outfit Freya has on. So cute. Thanks for a great video today. See you tomorrow, love, me💋💗🧑🏼💻❤️💕
Freya is so sweet!
Thanks Marcie for being as
natural as life is
itself, and giving
it all not only to
your family but
also to everybody who
watches the way with little
angel Freya..❤
God Bless❤
Thank you so much for being here
Hi Marcy - I so enjoy watching Freya and her development as well as your intentional parenting. Life is not filled with marks and how well you achieve things so I, as a teacher of young children, find it so disheartening for all parents to hear what their children have not achieved. Perhaps you could ask the school to leave out the 'marks' for each skill on your copy of her report, and to rather comment specifically on the skills she is achieving between each report session - ie: 'Freya is able to take 5 steps unaided in her gait trainer' - therefore highlighting actual achievements rather than focusing on where she maybe on some arbitrary scale. There is most certainly more going on in her brain than we can imagine - she just expresses it in her own way.
Love to you all in this festive season xxx PS - I may try those chocolate stars!!
Marci, I am a firm believer in removing negativity from my life (and I am much happier for it) Ignore the IEP reports, why would you need to see them, you see Freya's progress every day and who is better placed to judge that progress than you? I have seen amazing progress in Freya in the last 6 - 8 months. Look how she's standing up on her own, climbing the stairs, eating food when she feels like it, and in the greater scheme of things, does it really matter if she doesn't get up and walk unaided? she can scootch around quickly and get where she wants to be. I know you had that setback with her seizures but they are under control now and she is a happy, healthy wee girl. I wish I could be there to give you a BIG HUG (but my arms would never reach across the Atlantic 🙄🙄) and tell you what an amazing job you are doing with your little charmer Freya, you encourage her and positively reinforce all the time to get her to her next steps. You got this. 💪💪😘😘
Thank you I agree. She is doing amazing things!
I think parents of kids with disabilities shouldn’t ignore the goals but it is all subjective. I think Freya will learn and grow at her own pace and some years it will be faster than other years but celebrating all her milestones is the key and you do that, Marci. I see that Freya understands so much more now and she is so happy most of the time. How do you quantify that? Your instincts are right on, Marci, because Freya’s growth won’t go to anyone’s schedule but her own. Go Freya, we love you! ❤️🇨🇦🙏
I like your rationale about Freya’s progress. No one knows our children better than us moms.
Oh Marci, I so much feel your pain. The 1st time I was told my child was not performing to the "standard" & needed an I.E.P., I was devastaded. But more so I was angry. This mother bear did NOT like someone else pointing out her child's flaws.
The idea of an IEP is good in concept, but I think EVERY child should be entitled to one. Not to point out their weaknesses, but to recognize their strengths.
EVERY child develops at different rates & in different areas.
I did poorly in school. I was never diagnosed as dyslexic until my 2nd child was tested in Kindergarten. As they were explaining the results to me, one of the therapists saw the expression on my face was "So, what's wrong with that?".
Then they changed their attention to me. She said "You can't do this either can you?".
They worked with me and my son thru that school year. We both excelled. I went from a "dumb, slow" person to attending college & being on the Dean's Honor Roll EVERY semester. I'll never be an accomplished speed reader & 52 yrs later I still struggle with comprehension, but I do quite well.
One of my children was reading at 3 1/2, one had excellent penmanship at age 2, another excells in math like me. One has an engineering mind, and can see how things work & can find solutions to a problem that other experts are stumped by. Yet another child can pick up any musical instrument and play nearly perfectly on her 1st attempt.
We are all different with different strengths & weaknesses.
Yes, Freya has her challenges with her special needs, but what a joy she is to so many people.
Try not to fret over the fact that it takes 20 people to give her a positive preschool experience, but rejoice in the fact that she gave 20 people an opportunity to rejoice in her sweet spirit & celebrate her accomplishments!! Oh that we could all have a rooting section like that!!!❤ These people have chosen a career in this field & like other teachers reap more than they sow.
Continue to be her advocate like you do with all your children.
God trusted you with this special spirit, because He knew you are the best mom for her.
Wow what an amazing story.
Freya meets so many of her goals because 1 her parents 2 her brother and sisters 3 her teachers you guys play with her work with her love her
My daughter is on a IEP! I understand we’re you are coming from. My grandma was a special Ed teacher for over 20 years! It’s rough that we have to go 😊Fraye is a beautiful young girl!!
Thank you
Hi,Marci
I just saw your video of the EP goals. First of all your whole family is amazing. It’s amazing to see you, Chris,Ian, Jesse,Fiona interact with Freya. Freya is treated like a normal child instead of a handicapped child, and that’s why Freya is accomplishing those goals. Wheather she’s Slow or fast she is progressing wonderfully. Freya goals are our goals too. Freya is extremely blessed to have all of you guys. The love the kids have for her shows tremendously. I love your family and its happiness in my heart to see a video of your family. I love her simple responses and smiles. 😊Hugs and much love from Bradenton Florida ❤
It Will be good dont worry be happy happy sunday💌💌💌💌💌💌💌💌💖❤️
Freya is doing great! 🙂
My elder son had an IEP for speech from age 4 on. I never liked reading the reports because I felt instead of measuring his progress against himself they measured him against the “normal “ kids. All I needed to know was that he was learning and making progress not that he was so many years and months behind.
Completely agree. There has to be a better way.
Support workers come and go, so records need to be kept in order to handover all information about the individual, so the support remains consistent. Parents receive a copy of these reports as a cutesy, but to put it simply the are used for legal accountability to justify current and ongoing future funding for your child.
IEPs are what they, a plan of individual goals, that are specifically developed for your child.
These goals are usually based on individual abilities with aim of further development in these areas.
By law they need to be reviewed regularly, usually every 6 months
-12 months
Part of the review is a measurement of success.
Goals can be rolled over to the next plan, they don't have to achieve every goal within the life a 12 month plan. These goals can be rolled over to the next plan and again be reviewed in the next 12 months.
These goals are never measured against another individual's ability.
This is the bureaucracy side of things, not a reflection of your child and their individual support needs.
The beauty is
Inside out...❤🎉 & Freya
Knows it..she's
your copy..❤🎉
Good for her I love when she on camera she is sooooo beautiful
Way to go Freya
For me as a 37 year diagnosed with autism without any intellectual disabilities and five other diagnosed disabilities outside of autism, I didn't have an IEP until 6th grade and I had it until I finished and graduated from 12th grade. The problem here is I didn't get help with executive functioning skills, learning how to make inferences known as reading between the lines, understanding abstract language and working on my weak auditory working memory in needed speech therapy. I also didn't get needed individualized OT (occupational therapy) and the needed individualized help I needed through the Lindamood-Bell program. Plus I ended up getting an unnecessary IQ test when I had to get updated accommodations through the Regents Center for Learning Disorders (RCLD) at GSU Atlanta Campus back in the Fall 2009 semester. I found in the Spring 2010 semester that this unnecessary IQ test stated I have a low normal IQ when in reality my IQ is higher than that.
Marci you are such an amazing cook. Freya n all your children are so bright n beautiful and loving ❤️
I did a box cake and then just did the cookie cut outs that’s kind of cool you always do interesting things with your cooking I like watching that
Thank you
Ignore the percent improvements on the IEP! My two boys have Asperger’s syndrome. I did 18 years of IEPs. The important part of the IEP report is the verbiage; that the child is trying, is happy, and continues to move forward at their own pace. No way can you guess how fast the child will accomplish a task, or if they will ever speak so others can understand, or whatever. Chuck the percent thing and revel in the words! (I also can’t eat gluten, so your food preparation is encouraging to me! ). Thanks for sharing.
I love doing gluten free cooking. Especially now that Fiona is GF as well. Someone to enjoy them with me
As a retired elementary school teacher, I feel your feels. Every kiddo has individual needs, but I could not always feel these goals. Every single kiddo is individual, and these goals were moving targets. I told the families of every student of mine that the family was the best advocate. Please, please, please, follow your heart. Every kiddo is an individual. I was a Special Education assistant before I taught. It was wonderful to do this before I taught. I’m praying for you.
Thank you. A moving target is exactly right.
Your reaction makes total sense to me, Marci. Putting a number on development just can't reflect Freya's reality! Freya is downright amazing! I've helped develop IEPs, and it can be SO difficult to try to predict what ANY child will be doing in 6 months! Those numbers means she is doing extremely well, in my opinion! Your whole family is one heck of a team! 😉🎄😄🙏
Thank you. It is so hard to tell
Very interesting perspective. Thanks for sharing!
Freya looks really cute and pants
Oh Marcie.... in your heart you know that sweet Freya is doing amazing. I am not speaking professionally nor through any personal experience.... but just from my heart. I'm sure the school has to put numbers down on paper but real life experience and how Freya is actually progressing has nothing to do with numbers on a chart. I am sure every child who has Freya's syndrome progresses differently.. so who are they comparing her to. And I know that you know this in your heart, and you are so proud of her, and you can see how far she has come. It's just disheartening opening up a letter that is showing a chart, that is just a bunch of numbers evaluating and grading her progress. Yes don't listen to it!!! I would feel the same way. You, Freya and your whole family are amazing and I am in awe with all of your videos showing her progress and how amazing you all are together. She is progressing nicely and has come so far and it just proves that everyday she progresses a little more. I can understand you feeling the way you do and I know you celebrate her achievements. God bless you all. Sending love hugs blessings and prayers.
❤❤❤.....Linda
Thank you!
@@Freyasluckyarm ❤
My daughter had IEP's done when she was in first grade. She had to think about holding a pencil or scissors, we don't even think about cause we do it. I had to teach myself how to print left-handed cause her printing so bad.
Good for you Freya, love hearing great news like that. Enjoy her so much, don't grieve of what she can't do celebrate the things she can. Yes I can be your Mom and your children fit in age wise with my grands.
Beautiful Freya is doing amazing we see it❣🌻
Marci I love your shirt and them cookies look scrumptious!!
Do you think you might have a seasonal cutter box somewhere? It's either there or at the bottom of a toy box 😂😂 14:39 I hope you found it.
Just always remember you are an amazing mom.....i can see the progress in Freya since I have been watching❤❤❤❤
I have worked in the disability sector for over 30 years and grief is very much part of living with a child with a disability. Each parent experience grief in their own way.
The most important thing to remember is not to let grief get in the way of your child's development and progress.
The support (20 workers) you have will enable your child to live THEIR best life, even if it isn't the best life you would wish for them.
You are Absolutely correct, talk to your network of peers about your feelings, these are normal feelings.
But you have a whole team working beside you...embrace and celebrate Freya's achievements you are doing amazing..👏
Thanks for the update 😊❤ the cake looks Delicious 🤤👍 Great Video 👍😊❤ HAVE A BLESS DAY TO YOU And YOUR FAMILY ❤️🙏❤️🙏❤️🙏❤️!!!!!
It takes a tribe to raise a child and I love you guys sooooo much thank you for sharing 🎉
I like that you got the wooden shelves on the wall I want to do that in my kitchen after I paint and fix my house better I want to put likes all my spices on it on the wooden rack next to the stove
Great idea!!
I can't say I understand exactly how you feel, but I know how us Moms are-- we want our kids to succeed and be happy. Freya definitely seems happy, and knows that she's loved. I saw her USE A SPOON - my husband was watching over my shoulder and said --she did it again! I saw her with you one second and STANDING at the piano tickling the ivories the next. I know you count your blessings and are grateful. I just want you to know the Peanut Gally is with ya 😉🥰
I don't know so I can't understand everything your going through but I'm listening and I heard you. ❤oh Nd congratulations on the li'l Debbie cakes!! Sale them!! I'll buy them!!
I love you and your family.
Congrats Freya! I wish Sebastian's mother would let go and send him to school, he is also capable of progressing. She won't always be there for him, he needs to learn as much as he can while still a child, he's almost half grown now.
She was waiting until after his surgery. Sebastian has had a lot of surgeries in his short life. He can’t be at school while having so many surgeries. I fully support Stephanie and the choices she makes.
@@Freyasluckyarm agree!
I observed that his ENT was sort of negative about his attending school because of the Petri dish of germs. I suspect that since they were on the fence about it anyway 16:44 , Gio and Stephanie decided to wait.
Every thing she accomplishes is wonderful. Stay strong. I disliked all measures of accomplishment that we used to measure progress with every student. Stay the course sweet friend. You are her very best advocate.
That star cake looks amazing, btw! ⭐️ 🍫❤️💚🎄
Thank you. They were so good
Good Morning my friends, yummy Chocolate. My favorite too. Especially, Devils Food.🙄😈
I think it’s very exciting that Freya wants to and can feed herself with a spoon!!!
Need your recipe.
Yay Freya, doing great!! So happy
Not confused! Big hugs and f I were on the same continent I'd be round for the gluten-free goodness.
Incidentally I would like to know where you got the best Christmas jumper I have seen this year? Xxx
It’s is from a website called inclusion and tees
I agree with the tests and grades for disabled children. I tell my sons teachers that I don't care to know how behind he is, I would rather know about the improvements he has made towards his goals. The grades are not accurate of the progress.
Hi Marci Fraya” hope you are good.I’m not I fell at work in between the airplane and K loader My leg went all the way down through the plane and I got bruised up and hurt really bad so I’m dealing with this leg issue now. and tell Fiona Hope you are good. Liam is a great great kid. he’s going to be something really good when he grows up I can tell.Your kids are awesome I love. that you can sew clothes you’re like a miracle worker you can do anything you can cook. I love that you get your kids to cook I love that you have your own gardeN.Love watching you guys. I started watching you from Stephanie from Sebastian. I would’ve never had started watching you if it wasn’t for Sebastian
Stephanie is absolutely amazing.
Yes Marci Jesus does live.
The shirts says Jesus loves inclusion 😉
I’m a special needs grandma I understand I cried the first time my grandson asked Siri to call his mom.
Congratulations on your achievements, Freya! You truly are an academic in how much you love school!
Marcie - I'm curious. When you set goals for Freya, are they based on her accomplishing things as close as possible to able- bodied and typical children? Or do you create goals based on things that match more to her reality?Also, do you add goals that she will smash so she gets a couple of 💯? I mean she is so independent and communicative, it wouldn't be hard to add all kinds of things she's good at. They just might not look 'typical.'
Thx so much for sharing. Your family is delightful and I'm learning a lot about what it's like to raise a child with a rare syndrome.
It is hard to we usually do goals that are next in line developmentally. So she was pulling herself up to standing we made a goal to stand independently for 5 seconds. The hard part is these goals can take a year or two, or no time at all. It’s hard to gauge where Freya will be.
@@Freyasluckyarm Thamks for the response! IMHO, your family is doing a fabulous job of raising Freya. She seems so happy and I can see how much she loves you back. From an onlooker's perspective, it seems like she is really speeding up with her development. She is so precious and a reminder that we should all live in the moment and do things that make us happy. God bless you and your family, Marcie.
❤ Nana Nikki
Seems like she has made strides since she started the Keppra , seems more responsive and alert. Enjoy watching your family!
Thank you I agree
😊❤❤❤❤❤❤xxxxxx😊
Your daughter is loved and you have got her interests at heart.......who cares about a stupid test? How many kids with a disability have no parents to support them and they are in foster care? She has her family's support and that is all she needs.
Your her Mom you know how she' developing so do we who watch her videos everyday she's picking up on learning something new she's still young as she gets older she'll develop how she wants to
I like them. But you have to watch and make sure they are staying on task. It's easy for the teachers to slack because it's work on the teachers. Don't care, it is the only way my son got through school. He's now doing quite well in life. He has adhd quite badly. It's a lot f work momma.
Are her goals too high?
Bring the goals down momma, you are in charge.
❤❤❤
Well shut your mouth Lisa. She's an amazing child.
Awe, ou are such a good momma a d all your kids see to be very special 💖 ❤️
Maybe compromise and open it with a trusted friend? 16:31
I think I've commented something similar before, but to my untrained eye, she seems to be soaring! She FED HERSELF yogurt at school! I have a sneaky suspicion that she is getting you guys ready for so many new things. IEP who?
Thank you!
ja det är vanligt med isolering , och det blir värre ju äldre dom blir
I’m against testing children full stop, all children develop at different rates. Our special children need inclusion where possible. The I.E.P is a judgemental piece of paper to prove that the profession is to justify their means. Freya is a very fortunate little girl who has a lovely family who are helping her reach her goals. You worked through those emotions really well, I’m not sure I could.
I'm certainly not Freya, so take this and draw from it what you will. I might have mentioned it, and there maybe kids in Freyas class with Spina Bifida. I grew up in the middle of nowhere east coast Canada and was one of two kids with a disability starting school. Essentially me and my cousin literally we're the reason challenging needs (what its called in Canada) we're introduced to that school. There is no such thing as segregated schooling for those with disabilities, except for those who are deaf or HOH and those who are blind here. I was halftime in special education and halftime integrated. Looking back now as an adult, the only reason for assistance at school should have been toileting. The assessments that happened when I was younger made me feel like a monkey being asked to perform tricks and the educational ones to assess my grade level were for a week outta time, 6 hour days, once a year. I hated it. I don't feel I benefited from it but was emotionally damaged because of it. All that to say, to hear the percents they gave Freya and the statements that they love her following didn't feel genuine but a way to soft the blow at how poorly they think she's doing. Don't get me wrong she's totally loveable, I love Freya and believe on some level they do. Ultimately, they want her at the same level as her age AKA a typical child. That's not realistic. By the end of grade 3, my first year in special education, I wanted to quit and hated school every day after. All I wanted to do was be in the regular classroom with the other kids. Kids fail subjects, it's not great, it's not an excuse, but it would have been preferable to special education for me.
I think kids should be in typical classrooms as much as possible
@@Freyasluckyarm oh I know you do. I also know you would have let me fail over seeing me clearly miserable and pushing me anyway. Unlike Freya, I could tell when peoples tone didn't match their face and they weren't being honest. They knew I did and didn't mind making it clear how disappointed they were with me. It sucked on a whole new level!
🩵🩵🩵🩵🩵
I want to come eat at your house
I'm with @colleenford5398! Beautifully put!
After 45 yrs of caring for our special needs daughter , I can say I did not like IEP time.🤪 it really is about the gov. Regulations.
Do what YOU think best and just smile , unless there is an expectation they are pushing for them ,then remember you are the parent♥️They mean well🥲