Noah Will End Up In A Wheelchair

[@OurLANDingCrew8]

Noah does not have EDS, this is something we have explored and asked doctors about. The only thing he does have is explained by his low muscle tone. Everything that is going on is due to his 3 chromosomal abnormalities. This is why in the video I asked for others not to give medical advice. Noah is under the care of a team of therapists, doctors, and specialists who are giving him the BEST treatment possible and we have explored every avenue. I understand how easy it is to be like "well this kind of sounds like what I have" and want to push that narrative but for us, that is not the case. And even if it was EDS, it wouldn't change his treatment plan. Please understand how stressful and hard it is to have all of these new things being thrown at you as a parent then sharing it with social media then having so many people suggest it's that or this instead of leaving it to the trained medical professionals. I am sharing this because it's a part of our story and to raise awareness. We have the medical treatment covered by doctors and hospitals who are ranked best in the nation.

[@lifesjourney1]

I did hear you in your video and meant no disrespect. I have followed your story for a long time. I am sure you have the best medical care. Not at all trying to diagnose. Just sharing if you had not looked into that area. Sorry if i upset you.

[@rosamagallon34]

Your both amazing parents!! ❤️Love how both you advocate for your kids!

[@elfstarsaka]

For anyone not aware, Noah has already had genetic testing (twice, I think?) and EDS is a genetic disorder. I know the symptoms do sound similar but try to trust that Noah's doctors and family know him better than we do.

[@OurLANDingCrew8]

@@lifesjourney1 It wasn't just you. I have gotten this question/comment ALOT so this wasn't geared to you but just to everyone so I don't have to say over and over that he doesn't have EDS or any other diagnosis. We have ruled everything out.

[@sam04172007]

Sending you our love and support my child does not have the same disability as Noah nor at the same stage of severity. But we were told at age 3 that my 14-year-old boy would be in a wheelchair they did not have a timeline I still don’t the day we had to order a wheelchair my heart broke it’s still sitting in the back of my car because we need it from time to time and we’ve taken unconventional ways to go about physical therapy if you’d look at him on good days you would have no idea anything was neurologically wrong it on a bad day when my athletic boy is wheelchair-bound it rips me up as a parent My heart goes out to you I’m crying as I type this because I remember how scary it is as bad days remind us that nothing is a guarantee we just hope for the best and plan for the worst because the inevitable will happen but we just keep trying to push it off as long as we can

[@mymultiplelife]

I am an ambulatory wheelchair user. I do have EDS. The wheelchair has definitely helped me in day-to-day life with chronic fatigue and as well as chronic pain and dislocation. Your family is beautiful and you are doing the best you can do Stephani. I’m angry at the system for you that failed you when you were in Florida. Hopefully Noah will get the chair that he needs very soon.

[@sarahstein8492]

I am 21 have autism and I have the same medical issue with muscle tone and I want to let you know that it is not easy and it will never get easier for Noah, but it is very beneficial for him to know that he is supported, loved, and listened to is the best thing that could ever happen. One thing I do for pain management is low exertion and movement based yoga, it is tiring and there is some pain but it makes everything a little bit better in coping with the pain

[@sharisiragusa8271]

Diet can help a lot with pain....I really can tell the difference in my joint pain when I have too much sugar or gluten....When I cut down on sugar and gluten my joints feel so much better....I have scoliosis in my back in an "S" curve. I wore a back brace at his age for several years, which halted the progression of the curves....Hope that Noah gets relief from his pain....

[@sharisiragusa8271]

Emily, Don't beat yourself up...you didn't know.....All you can do is go from here and do the best you can for Noah where he's at now....

[@OurLANDingCrew8]

Getting him to eat a better diet is right around there with getting him to do physical therapy more.

[@MstresVampy]

Ty for this

[@KatTheTruth]

@@sharisiragusa8271 who is Emily? Do you mean Stephanie?

[@stillersgirl]

Don’t be angry at yourself, the system especially in Florida is stacked against families like yours. They failed Noah and it’s a damn shame. You are an incredible person, Stephanie.

[@crystaljohnson3669]

I have cereal palsy and hurt daily my heart goes out to him and all of you. I had heel stretching on both feet it helped tremendously. Prayers today im still walking and have kids. Prayers for a better quality of life and strength.

[@carriebowlen3785]

Thanks for sharing your lives with us all. I love how you share your love. I love being a member of your LANDing Crew!

[@chronicallycal]

You might have already thought of this, but I know moments like this can be overwhelming so I thought I’d share: One thing that helped me adjust to the realization that I needed a wheelchair was seeing other wheelchair users with similar interests to me living happy lives. I know Noah’s into video games, so maybe seeing people like Steve Spohn (director of AbleGamers) could help him? Without forcing anything ofc. Wishing you all the best 💛

[@2listening1]

That sounds great. I love watching gamers on KZbin.

[@jeanbanks5242]

This sounds good to try and see.

[@rosieacosta606]

You are such an inspiration ✨️ for all parents with special needs children! Thank you for letting us in your world. God bless Noah and all your beautiful children 🙏 ❤️

[@JustADifferentLife]

Hugs to you and Noah! My children are experiencing many of the same challenges as your children so I thought I would give a couple thoughts in case you haven’t considered them... you mentioned that Noah doesn’t like physio and really why would he if since it causes so much pain, we have found aqua therapy (therapy in a swimming pool) very beneficial as there isn’t so much weight/pressure on the joints even something as simple as sitting in a hot tub and doing basic movements/stretches can be helpful. My children also enjoyed and gained results from therapeutic horseback riding but this does take a lot more energy and they did get to a point where this wasn’t an option but have since regained abilities as it seems to be a never ending roller coaster we are on with their challenges. I hope you are able to find a physio therapist that works well with Noah and is creative in finding activities that Noah enjoys which undoubtedly will gain the most progress over time.

[@paommtz]

I agree Swimming is such an amazing sport and it’s fun ❤️

[@Inthegardenwithteddy]

So many things going on with Noah! I send you strength and peace. ❤️ It’s so awesome that Noah has such a support team to help guide through this. I hope you and Lonnie also have a support team for parents. You’re strong Stephanie. You’re awesome. 💪🏻

[@jadedblue04]

When you showed guilt, my heart broke. I know what that is like and it is so hard. There are so many things I wish I could have done differently with my autistic daughters. But also remember you did the best you could with the information and knowledge you had. Your heart was pure and that is what matters ❤️

[@elisabethhumason7420]

Thank you so much for doing this difficult video. We were also told that our son had low muscle tone, just like it was an interesting finding, not anything to be worried about. Now he is 13 and complaining of back pain and having difficulty holding upright posture for long. I am going to start 3 days a week core strengthening Pilates with him tomorrow. You may have helped us save him from years of pain and mobility issues. Hopefully we are not too late. Thanks again, and we hope and pray that Noah responds well to your treatment plan!

[@jwalk318]

I found this video excellent for the same reason! My early 20’s daughter has always had low muscle tone and even though she walks for enjoyment & way more than most people, also she rides an e-bike (hybrid) for transportation, exercise & coordination maintenance, I notice when she’s doing things at the counter for example, she hunches over and looks in pain. She’s far from a complainer about it. I just get the feeling she’s struggling even more as she gets older even though it’s always been a minor issue for her. I’d LOVE to see more videos and advice on things that could help her. I already decided a couple weeks ago that I’m going to get us both a gym membership. I think it’ll be FUN as well as therapeutic in many ways beyond the physical to do that with her at least a few days a week. Before this video I had no idea how much of a problem it could be! Even though my child is older than the KZbin channel’s mom’s kid’s, I’ve been watching her videos much of today, wishing I had them way back, along with the camaraderie of realizing I’m not alone! And my heart truly goes out to her for this difficult new challenge she’s going through and everything else she faces head on, daily, albeit with an incredible resilience and warm, caring attitude. Im certainly going to do more research now on the low muscle tone and ways to help my daughter as much as I can even though at this point it’ll be more up to her to put the work into it and make progress. I do want to be the best support for her I can and hopefully with more knowledge and doing the right & best activities at the gym which hopefully will help with her specific low muscle tone challenges, as well as getting fully invested for myself alongside her, as at this point, I can relate to things like joint pain and general weakness due to my own health challenges. I started watching the channel today out of curiosity to see what’s changed, improved etc. among the autism community or if there’s any new information as I haven’t been researching as much on it since my child is an adult now. But I should seriously do this more often! It’s been extremely helpful and informative!

[@erictaylor5462]

When I was 3 my leg had to be amputated and growing up with a "disability" I have learned a thing or two in my 52 years. A couple of things to keep in mind here: First, I have had a lot of experience with doctors (and other "experts" who have told me (and I have heard of others being told), "You will never..." There is only one expert who can tell you what you can or can't do. As am amputee I have done things that most people who have 2 healthy legs can't even do, so I call bull (fecal matter) on those so called "experts". This is *REALLY* important, and it should apply to everyone, not just people with disabilities: Focus on the things you can do. Don't worry about the things you can't do. The entire time I was growing up there was only one time I finished a foot race better than dead last. The one time I didn't finish last was in 1st grade. I finished 2nd to last because as a girl in my class passed me I pushed her down. I felt terrible right away and I was sure I was going to be in big trouble as soon as she told on me, but she never did. That just made me feel worse. I never understood why she never told on me, but just now, remember this some 45 years later I just realized, at some point in the race she was *BEHIND* me. She was only a bit slower at running than I was, so she must have understood what it was like to always finish last. Crap, now I feel even *WORSE* about pushing her down! Sorry, got a bit side tracked there. They say that can happen when you get old. Does that mean... Well, the point of this long ass story is, I wish I had learned earlier that the person who finished the race in last place, finished the race. I can't imagine what you are going through as parents. I hope this can help you.

[@yvonnejohnson2109]

I started to cry when you said that Noah can't ride his bike any more. I know it' must be hard to share what is going on with your kids. But thank you for sharing. I have learned a lot from watching your channel. Hugs 🤗 to all of you. Thank you Noah being willing to let your mom share your story and what is going on with you.

[@rebelrebelcameron9382]

I can't even imagine (thank God) having a child going through such pain and being so limited; I pray his pain will ease and you have the strength to endure all you will have to go through in the future. Stay strong family!

[@danielle9074]

So sorry you're going through this. I hope Noah gets his chair quickly. It give him more freedom, even though it's scary as a parent. I have cerebral palsy, so I just wanted to pop in and say that hamstring / achilles tendon lengthening surgeries (really any surgery for a muscle tone issue) are a bigger deal in terms of pain / recovery / trauma than ortho doctors tend to make it seem. It's not to say they have bad intentions. But they don't go through day-to-day recovery with you. So, if you can gather as many opinions from a wide variety of angles as you can (especially from PTs and people who've ha the procedures) before)going ahead. I'm sure you're cautious decision-makers anyway. But I'm throwing it out there because lots of adults with tone Issues flat out refuse to have any more surgeries b/c they don't feel they get enough benefit.

[@carolfink3991]

My heart goes out to Noah I can see the pain in Noah's eyes when he dose PT he is so Brave to keep trying and you guys are in my prayers

[@gerald4535]

I can't imagine how hard it is to hear this. I think one of the hardest things in life is that some things don't have answers or the answer that's out there isn't what we'd like to hear. I know you all will get through it and Noah will continue being Noah. I've seen his maturing through the years. You all are doing great.

[@courtneyholland6215]

This breaks my heart for Noah and you guys im praying 🙏 for you sending extra prayers, love and positivity

[@dominics7565]

I was put in a wheelchair after being shot at age 17. I’m 33 now & yes it’s a hard thing to accept but life is not over. I’ve been playing wheelchair basketball for 15 years. It has taken me places I never thought. Noah God bless you & don’t ever give up.

[@amyforster1208]

I have EDS (not saying Noah does) and PTSD and ADHD, and just know how tricky it is trying to get treatment for all of them, because they interact with each other. I can empathize a lot with Noah, as doing PT or any type of exercise when you are neurodivergent can be super difficult. Sending all my love to Noah and to both you Stephanie and Lonnie for dealing with all these things, you are superstar parents 💜

[@Ashley.Alvarez]

As I usually say thank you so much for sharing my 7 year old is now going on about 7 months wearing afos. It isn't ur fault mama unfortunately not all doctors therapist etc care enough to inform . Prayers and I hope things get better 🙏🏻 ❤

[@kaylanoel1868]

That was a hard video to watch, so i cant even imagine what its like to be living it daily. My thoughts and good vibes are going out to you guys and especially Noah 💛 There are amazing youtubers and people in social media who are wheel chair users, maybe Noah would be able to see how fulfilling their lives still are, how they are no different than any other able bodied person.

[@leslieholland7843]

My prayers to Noah and your family. Kid did not need one more thing. My late husband was in a wheelchair for his last 8 years, it is a tough transition. I believe that my Brien watches over me, I will pray that he helps Noah if he can. I love you guys, and wish you all the best on this journey!

[@faithandautism-myjourney264]

It is through your channel that I pushed for youngest to seen. We now have her dance lessons funded as it has been proven to help her low tone in her legs and feet. It has actually prevented her needing AFO’s. So thank you for always sharing your journey and information. Even though I’m in Australia, I have found watching you comforting.

[@colleenrichardson5339]

People really take their child’s health for granted and I’m so sorry this is happening to Noah, I really hope things get better for him and that his pain can be managed. You are a literal hero and the strongest woman I’ve ever seen in life, I really admire your strength. You are such an inspiration! Definitely do not blame yourself for anything, for what you may or may not have done, you had no idea! You do what’s best for your kids no matter what, and we all know you are not to blame. 💖 Thank you for vlogging your life, I really admire your honesty and openness. 💖 Much love

[@autisticfairy8002]

Your videos are so helpful. I'm going to start working with my nephew asap. He definitely has very low muscle tone. Just know you helped this family here. I appreciate your family so much. I learn a lot

[@beatrizmazquiaranplaza6984]

Los of LOVE, you always have done the best tl your knowledge for your kids,try to be very proud ,and enjoy each momento with your wonderful family

[@kristiewilliams3512]

This video came right on time ...wow confirmation we are doing the right thing for our son Jorryn he is Autistic and a constant toe walker...he is getting braces today....praying for your strength and your family....sending hugs and blessings..I have followed your family for years even before Jorryn was convinced..We live in Jacksonville fl..MD considering moving too..You inspire me so much. KEEP PUSHING YOU ARE THE BEST

[@Rose-zy6vv]

I relate to your videos so much. Thank you for sharing all the experiences. It makes me feel that I am not alone in what we go through. My three boys have autism and my oldest(16) is a toe walker. I can relate to this because I didn’t realize it was so severe until this past year the pain became unbearable for him. He had custom orthotics molded and has to have therapy at Gillette’s as well as stretches he is supposed to do at home. His muscles have become so tight to the point where his heels never fully stand flat on the ground. It makes me upset because I brought up his toe walking since he was a toddler to the pediatrician as well as sensory avoidance, the pediatrician ignored it and then diagnosed him with ADHD in elementary school. It took my two younger boys to be diagnosed with ASD for the oldest to be evaluated. He was finally diagnosed this year. I am so sorry about what Noah is going through, the pain can be so debilitating. I hope he can find some relief in the therapies and other suggestions. You are a wonderful mom and I appreciate your videos.

[@chaneykane3828]

This is so sad. Noah is so bright and always positive in all your videos. I hope and pray for the best possible outcome for him ❤️

[@christinatran6620]

Sending all the prayer and hugs for your family and Noah. As a mother of 2, this hurts a lot. I can't even start to imagine how hard this is on you. Hoping all the therapy he's getting will help him out tremendously.

[@lolol77404]

You and your partner are doing an amazing job taking care of your kids and figuring out what would help them I know it isn't easy but you guys are amazing

[@iselaacosta2832]

You guys are great parents. I understand how you could feel guilty but is like you said that you didn't know and you did your best at that time. The good things is that you know now and this can help with his siblings. I wish you the best and that all the therapy and surgeries work for many years to come.

[@tvil8]

sorry for the struggles stephanie. i always think of that video clip when u and noah were at mcdonalds and you told him he was polite and sweet and he told you its because you raised him that way🥰 these are parenting goals i cant wait to acheive w my little nugget. sending love from miami🌴

[@xcarolynx2002]

I fully understand how he feels about the chronic knee dislocations they suck i go through them myself. I am sending Noah and the rest of the family hugs prayers and patience as you navigate all of this craziness in life with Noah and the rest of the family in any and all of their medical challenges now and into the future

[@savannahcarlon7033]

I'm 26 and have been using a wheelchair full time since I Was about 14, started using one part time when I was just 2. A wheelchair is freedom, it's accessibility, it's getting your life back. In the disability community, we congratulate people when they get their first wheelchairs. You might be feeling overwhelmed now, but I promise you this will be a positive thing. I can tell you that you should work on getting him a wheelchair as soon as possible. If you can fund raise for a private company rather than a medical company you'll be able to get him a much better chair - I highly recommend Eagle Sports Chairs - as they're custom fit to a level medical suppliers can't achieve. My mother had to fight to get me a wheelchair because they wanted me to walk full time. I was instantly happier and more mobile with a wheelchair. She had to fight the doctor who is world renowned for my disease.

[@jwilleseries7764]

That is quite awesome to hear as I had no idea the disability community congratulate people when they get their first wheelchairs but that is great and make perfect sense. If you don't mind me asking: Why did they want you to walk full time? Does it hurt walking?

[@ThePublicHealthHarlot]

this!! talk to adults with the same (or v similar) disabilities as your son has!

[@ThePublicHealthHarlot]

i also wanna second this as an adult with ME and POTS who's JUSt getting to finally use a wheelchair (and is still waiting on horsepower): wheelchars are FREEDOM. The only thing that sucks is nondisabled attitudes of pity and patronization (and lack of access). I can't wait til I finally "end up" in my proper wheelchair! It'll mean I can get outside again and won't have to torture myself attempting to "look OK" to everyone else.

[@marcelarios1690]

My son was a toe walker from when he started walking until he was 4. It didn’t stop. We opted for Achilles heal lengthening surgery instead of serial casting. It was done bilateral so we wouldn’t go in twice. I know your sons situation is different but know that you are doing your best and he has amazing parents! Hugs

[@WiseNik]

Hugs and prayers for your family. You all are wonderful, so loving and dedicated. You all are inspiring.

[@savingday]

I am so sorry Stephanie, Noah is such a golden child. I was always happy to see him talking and going. This is heart breaking. Stay strong, I know you have been all this while.

[@heavenlysaint8383]

Hi Stephanie, I'm a new follower and I discovered your channel on KZbin because I was researching on autism. My five year old son was diagnosed with Autism Spectrum disorder level 3 a few months before he turned 5 caused in Florida it's a waiting list to even see a pediatric neurologist. I learned a lot from video and as a single mom of 3 boys and the youngest child is autistic I can't imagine what you're going through. hope the children get all the help they need. I know it's a lot but you got this. Keep pushing 🙏🏽🙏🏽🙏🏽🤗🤗🤗🥰🥰 and thank you so much for sharing.🤗🤗🤗

[@aleitlion]

Swimming, horsebackriding, rowing or cycling are great for taking pressure off of the knees and joints, while encouraging muscle growth :) I Hope Noah is going to find a type of exercise that really is fun for him ;)

[@caraevans2609]

When I was nine my family moved from Chicago to Indiana and after meeting my new doctors at the Children’s hospital we learned that I was going to need a surgery that was going to require for me to be in a body cast for a month. I had a wonderful doctor who recommended to my parents that they get me in the water because he knew that I was going to be facing a lot of surgeries throughout my teen years. This bit of advice changed everything when it came to recovery and I remember how it shocked my therapists with how quickly I would recover after each surgery. I’m a big advocate for water therapy now for anyone who has any kind of physical limitations. Stephanie -> the water strengthens without bearing weight on the muscles!

[@jcfreak2007]

I know that it's easy to beat yourself up over the mistakes that you have made as a parent but just remember that the fact that you are learning and growing and taking responsibility for your actions or inactions makes so much of a difference to Noah. Even though he will face the consequences of your lack of knowledge of the situation, knowing that you are sorry for it will mean so much to him. I say this from the perspective of someone who is a victim of medical neglect with parents who still won't acknowledge the fact that they did anything wrong. It would mean a lot to see my parents cry over the things that they have done to me. Take care of yourself and remember that you are only human. You will make mistakes. It's ok.

[@rosenaandre7147]

I just wanted to thank you for sharing your stories. You're a a true meaning of a supper mom. Your strength your courage is unmatchable.

[@karenpope118]

Don’t be angry or upset with yourself -from what I’ve watched -you and your husband do everything you can for your kids -I’m amazed at just watching and hearing how y’all work so hard to help your kids to the max -it’s easy to see the kids are happy and love their parents -I will be praying extra for Noah - I do pray for all of you-I feel so bad that he has to go through all of this -I have one grandson who is autistic and he touches my heart more than anyone -I learn more from him than I can teach him -he too is loved beyond description -and I have had a very special place in my heart for autistic and disabled children-teens-adults-to me they bring the love out of me to them from just seeing them -you can see the love in their eyes and smiles -thank you again for sharing about your kids and their journey in their life travels and how you try to find the best help for them -it is priceless to me -take care -my love to all of you along with caring thoughts and tons of prayers -🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏💗💗💗💗💗💗💗💗💗💗🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰💖💖💖💖💖💖💖💖💖💖😊😊😊😊😊😊😊😊😊😊

[@kellileann7409]

I really hope that it gets better for him & not worse. You're the best mama and I love watching your family 🥰

[@Ginabina76]

Nothing but love for y'all... We were there last week for a re eval! Love love love that place!!! We are also in the process of trying to figure out a definite yes or no for JRA with our 14 yr old who has a lot of the same things as Noah. Our boy always chooses Chinese food when we go down there!!! Arent many "real" Chinese food places where we are. Stay strong momma. I know its not always easy. 💙💙💙

[@gigialexander8562]

My heart is hurting for you. I know you know you were not the cause but this does hurt for a momma. I have learned so much from you and watching you over the years your tears i also shed for my own son with ASD. You are amazing and resilient as are all your children. Prayers and hugs to you all!!

[@stephaniehastie4655]

As a wheelchair user (totally unrelated to Noah’s situation) I’ve one a lot of research on what’s available. Even if he isn’t in a chair yet, find out about what sort of things will be available to him. For example. A hand cycle; or just n attachment for his chair (a dragonfly I believe is one brand). That is just one example of what he might enjoy. So he will be able to ride a bike after all.

[@lorifoster6777]

Bless your heart. I’m praying for all of you. You are doing a great service by blogging about your experiences. I don’t have anyone in my life with these issues but I can only imagine how difficult your life is and yet you are so engaged in getting your kids needs met. Take care of yourself too.

[@1972chezza]

Great work with your exercises Noah, I do similar exercises. I use a wheelchair everyday and i find that it has made my life easier.

[@nathanjw940]

I was going around Indianapolis with my friend with CP there's some really good ones out there that can get you around town quickly. My heart breaks hearing about his pain because his smile brings so much joy to others. He is such a fighter. Stephanie please give him a hug for me.

[@MomLuvs2Collect]

Just found your channel & I want to say God bless you & your family🙏!! I'm very sorry to hear about Noah needing a wheelchair😥! When my mom needed a wheelchair we were able to find one at a thrift store which maybe you can find too so that he has one while he waits. Dealing with one autistic child is very hard so I can't even imagine dealing with 4 of them, you are both strong superheroes for your kids!

[@feralgirlboss9043]

I’m an ambulatory wheelchair user and before deciding to start using a mobility aid I experienced a lot of grief for the life I imagine for myself, but by the time I decided to start using a wheelchair I was extremely happy to actually receive my chair. It felt like freedom being able to do things I used to enjoy like going shopping without being in as much pain and getting so fatigued. It can be really hard to make the transition into a wheelchair but if you can focus on all the things that Noah will be able to do with a wheelchair he couldn’t do before it feels very joyful. ( I actually compare getting my wheelchair to the feeling of getting my driver’s license) hopefully this was helpful sending positive energy to your family 💛

[@sandynolan5732]

My son has autism and hypotonia as well. No wheelchair needed. He is now 22 and wears afos. This required hip cand femur surgeries when he was younger. My thoughts and prayers are with you all.

[@OurLANDingCrew8]

Yes! Not all hypotonia means they will end up in a wheelchair, that's why I wanted to stress that because I didn't want to scare other parents. There's no reason the other 3 kids would need a wheelchair.

[@Ginabina76]

Was your son tested for jra or was that brought up? We are dealing with all this muscle tone stuff and hypotonia was mentioned but they went the ra route 1st. We apparently have severely low tone with him and are trying to gather as much info as we can because I think its hypotonia. All steph says about Noah and his pain is our child. No core muscle no ability to hand write, no grip strength, its all the same. We are actually fighting with the school rn because a teacher says he can write he just doesn't have the emotional support that he can do it. Oh soo frustrating!!

[@livsephton9]

Yes I'm 23 and have Autism. I had low muscle tone as a toddler/child. I wore metal and leather AFO's when I was a toddler as I was a toe walker. No wheel chair or surgeries needed for me. It's different for everyone though

[@maygenlowell6679]

I’m autistic and have chronic pain and joint dislocations and I’m not gonna lie, it hurts and it sucks, but I have gotten used to it. Even though the pain is still there and is getting worse it seems to affect me less and less, the more I learn ways to deal with it. If Noah has to deal with pain too, hopefully he will be able to cope with it better and better as time goes on. ❤️

[@beetee4865]

I'm so sorry to hear this. As an OBGYN KZbinr Mamadoctorjones says: you do the best you can with the information you had at the time. Of course if you had known the kind of help that Noah needed, you would have done it because that's the kind of parents you guys are. Hang in there ❤️.

[@kimlavigne5947]

I can’t imagine how that feels for you and Noah and the family,my thoughts are with you guys, I know it hard but Noah is strong enough to get though it, I’m sure it will be ok at the end 😊 I am no trying to minimize the struggle I’m trying to stay positive ❤️

[@tequilabarber9810]

Oh honey I'm so so so sorry! As a mother of a special needs child I know this hurts so much. Poor Noah! Sending prayers. I love you and the family steph.

[@toystorylover5257]

Aww! Poor Noah! I just want to give him a hug. I’m sorry your family is going through this. Praying for your family! Well, thanks for sharing! Have a great day!

[@RosesandBlingPapercrafts]

Thank you for sharing Stephanie, I’ve recently gone back to PT for my tone and back issues. I need to get my teen back into at least PT as he was diagnosed with global hypotonia since birth. He’s 18 now so he isn’t under a paediatrician anymore, his posture is terrible and suffers leg pain when we’re out and about. I’m so sorry Noah’s health has deteriorated 🙁

[@candisraerae9866]

This is heartbreaking you guys are always in my prayers one of my favorite families to watch I’ve been watching you since your mother-in-law’s house with the Miral on the back wall You’ve had so many obstacles thrown your way As a family. Praying for you guys

[@Vamalways]

At 16 years old my grandmother son was told to get a wheelchair because his juvenile arthritis would eventually make him disabled. His battle has been long and hard, but he still can walk. He walks with his shoulder up and his neck down but by the grace of God he still walks!!

[@mitchr220]

Sending positive vibes and good energy your way Stephanie. I know it's not easy and I feel for you. I wish and pray it'll get better for Noah and the kids. Hang on tight 💖

[@conniewhitmarsh712]

Prayers going up for Noah and your family. Love watching your videos.

[@lisachristinaconfirmed5067]

🙏🏼praying for your sweet Noah to heal. Don’t give up hope. You never know what is possible, keep exploring ALL options.

[@clairepaquette5676]

So sorry to hear this for Noah. He is such a sweet boy. Keeping him my prayers.

[@mariahicks6708]

You are an amazing woman and mother, never ever think you have done anything wrong when it comes to your children. I know you are so busy concentrating on you most wonderful children, I hope you yourself is getting help for yourself. It is often hard to remember talking to someone yourself who doesn't really know you or your family. This is my first time seeing your channel. But I know you live here in the North of North America. So you have lots of available options for you. Lot of life for you and your family.

[@a.herrera7940]

Wow Stephanie. I feel like y’all can’t catch a freaking break. 🥺 Sending you hugs, praying for all your babies, and for your mama heart ❤️😞

[@carolmilligan5653]

Oh Stephanie bless you. Sending hugs and prayers for you and Noah. So glad that Colorado is so supportive. I hope Noah gets some relief.

[@ceciliarules411]

you are an incredibly strong, a wonderful mother who will go to the ends of the earth for their children. do not blame yourself! I am sorry to hear the news about Liam! keeping you in the light

[@cryptidless]

I’m a wheelchair user, I’m autistic, I have ehler danios syndrome, functional neurological disorder, low muscle tone, and some other health issues. Starting to use a wheelchair was overwhelming and isolating, I felt like I lost everything. I dislocate my knees and hips daily, autism and hyper mobility are very common together. Overtime I gained confidence in my wheelchair and it’s life changing. The pain I was in constantly is lesser than before, and I was able to start navigating life easier. I can keep up and go out with friends again, if you need wheelchair recommendations, or some tips to gain confidence in a wheelchair I’m more than happy to help you both out. He’s not gonna go thru this alone, and overtime it’ll be easier, and probably the best for him. Wheelchairs can have fun accessories, fun colours, and can be incredibly comfy, the way I have mine set up doesn’t trigger my sensory overload very often. I hope you both are doing ok, good luck on the journey ahead.

[@cryptidless]

However, I wouldn’t recommend delaying getting a wheelchair like you mentioned in the description, it can worsen his condition, even if you just get one to use part time for now, like long trips, etc

[@alookinsideablindlife5143]

Thinking of you and Noah as you all deal with this change ! Hugs remember you are AMAZING and so is Noah and all your kids

[@chantalcarlson]

Steph, I also walk on my toes. My parents thought it was cute and never kibashed it. I realize Noah is a complicated case - but you didn't do anything 'wrong' necessarily. I struggle with chronic pain and problems due to the toe walking - but it doesn't mean I'm any less of an adult or a human. *Hugs*🥰

[@vickiegreer7698]

Poor Noah, I'm sending you and Noah and your family alot of prayer's. Poor Noah, feel so sorry for him.

[@callumortiz6723]

I loved watching Noah working on building his muscles. He rocks!!!

[@veredben-avraham6598]

I have knee issues and I can simply re adjust my leg and my knee will dislocated. I have many issues with my back, knees, feet that make it hard to walk far distances. Please tell Noah it's ok the wheelchair will actually give him a better quality of life. He will be able to go more places enjoying being outside and can take nice walks with his parents. He's got this!!!!!!

[@jeanclaflin9147]

You are both s such good parents I am so glad you are back on KZbin I love watching your family your kids are beautiful

[@jessicalayton1200]

I'm so sorry, i wish I could give you hugs! It hurts to watch your babies hurt 💔 but God gave him the perfect family and I know he will be blessed with a wonderful life because he has a momma and daddy that will do everything they can for him!

[@malwilhist]

I'm 37 and I am still in and out of PT. I do well in the water, but not all PT places offer it. I don't love it, either... or even really like it, but know I need it. It took me a long time to find my groove. He will find his, too. You've got this, Noah!

[@MiriWeinstein]

I jave low miscle tone and hypermobilty i got that when I was 6 weeks. I went to rhe doctor when I was 6 weeks old for my test and i do t pass it and the doctor said that i didnt pass because due to low miscle tone and hypermobility. Lowiscle tone isnt easy. It really hurts my legs when I walk a lot like in a thorpe park. J went to a thorpe park, Chessington, Gulliver's and more. And aslo i qent to america in February and i went to a mall and my legs were really hirting me at the end of the day because i was walking alot. Or even in the airort it was hurting me a lot. Iigjt het a wheelchair for those theme parks and long walks

[@terriehumphries6028]

Suggestion would be to get him into a water therapy. This is very low impact exercise with very good results. My son has low muscle tone and we did not get the therapy he needed either. They tell you what is going on but not how to fix it. Well some places do not all. But per someone else's suggestion we got our son in the pool. He is doing so much better today. He is 22 now. He is not cured but he has a much better quality of life. He had trouble wiping his on bottom at age 16 but this has become a thing of the past.

[@leahpitman2731]

My sister in law worked for equine therapy. It helps build muscle tone and core strength. Some kids improved drastically because they related to the horses. Of course this wouldn’t replace the other therapy, and I know you are already stretched with all you are doing, but it might be worth at least looking into.some of your other children may qualify!

[@repurposedart9897]

You are a very strong an amazing mother...

[@wendyreardon1829]

Praying for you, Noah and your family

[@Zfairy1]

Bless you and your family I hope Noah is able to find some relief from his pain I am sorry you are going through so much.

[@peggygray587]

Sending loving support to your wonderful Family. You are such strong people.

[@melissafasel4202]

They are blessed to have such great parents, our family will be praying for Noah and your family ,

[@chelseydoctorwho3804]

You are amazing and so insightful and give so much information from your experience. You are amazing mom and person love watching your videos. When you where talking about Noah and started to get worked up that you might have prevented this if you knew and I started to cry with you as I know how you feel and all we can do as parents is do whoever we can for our kids with the knowledge we have . Your amazing

[@christydihel8562]

Did they have any medicines that will help his pain for now? I have chronic pain elsewhere but it sucks. I hope PT can help but like you said it will take a lot of work and he will always have issues. Don’t beat yourself up for not doing anything when he was younger. That wasn’t your fault. That was the doctors and the system Florida has. You’re an awesome mom.

[@christydihel8562]

Also, can Noah get an electric wheelchair so he can have more independence?

[@temperancecrossing4151]

I am so sorry to hear about Noah :( My autistic son turns 14 this year. He is essentially bed ridden. His feet turn outwards and he struggles to walk. We have seen many Drs etc but no answers or help. My son has selective mutism so cant talk to people and he hates being touched too. I too worry what will happen when I'm gone as I have many serious health issues including neurological problems.. my older son will have to look after his brother.

[@Plumeria6460]

Prayers for you and your family. You are the best mom. 💖🙏

[@annabeltemple230]

As a parent, I can and cannot imagine what all of this means to all of you. I was given a very poor prognosis as a child, including numerous diagnoses similar to Noah. I've defied every odd, prediction and stat imaginable. My plan did not always align with conventional medical 'wisdom'. Everyone is different, and in medicine, there are no certain outcomes. So much is a marathon, and not a sprint. Sometimes, there are answers, or they are not always the ones that you need, nor want. Just sending you good vibes, and hope that these quality of life measures are a bridge to something better being available in the longer-term. There's a lot of resources and expertise for pediatrics, but far less so for adults, especially as they age.

[@cheapthriftymom7284]

I can tell your a wonderful mom and you are doing a great job!🙂

[@anjholz5151]

I'm sorry that you are having to deal with this especially with Noah being so young. I'm. Praying for your family and sending goodbye insending good vibes. Keep us updated 🙏🏾 . ❤❤❤❤

[@prettyfar33]

You can ONLY do what you can do!!! You are BOTH such GOOD parents!!! If you had known better you would have done whatever you could have done to make it as well as it could have been!!! It must feel like the bad news will NEVER stop!!! But your family has such AWESOME love for each other that you guys will not only make it through...but you will be the envy of if not all then most of the other family's

[@willowgirl2635]

You are doing the very best you can for your children, you are too hard on yourself. Love to all. Xx

[@Meeko4eve39]

I normally don't comment. But this time this video kind of hit a bit closer to home for me than your other videos. I was born with low muscle tone (among other physical deficits). Originally the doctors told my parents that I probably would never learn how to walk, let alone do things like riding a bike etc. But my parents were very persistent in their advocacy for me (and also had great people helping them navigate this whole stuff) and I got into physiotherapy when I was really young. And from what you are saying in this video it looks like this, their advocacy as well as the access to resources as well as the quality of the resources that we were able to use, must really have made a WHOLE WORLD OF DIFFERENCE in my life as well. Though I learned to walk at a later age than is considered normal and while I do not function exactly how a person without low muscle tone (and without some other handicaps that I have that play into this as well) would, obviously, I did still prove those doctors wrong, ultimately :) So I am very, very grateful that this is how it played out for me and am super grateful to everyone and especially my parents for having made that possible, of course! That being said, I can only try and imagine how stressful and heartbreaking it must be to realise somthing like this only now. My heart goes out to you! But this video is evidence that Noah is just as lucky as I am that he has an amazing mum and dad who do everything in their power to support Noah living the best life that is possible for him, even if it does take time to process and readjust to what the situation at hand now is and what the path forward necessarily looks like!

[@simplyfunctional6451]

I’m so so sorry and my heart hurts for Noah! As mommas our baby’s mean the world to us and having to watch your child go through so much 😫💔💔💔