Any parents or family of amazing special needs children of any age and any ability?
Nicksmom106
Posts: 1,624 Member
hello!🌼
My name is Ali, and I am the proud momma to an amazing, funny, handsome and Active 17 teen year old son! Yup Nick...how'd you guess😋 He is also Autistic and very limited verbally but can get his point across with his many words/phrases and our secret language of mommy and son💞👍
Anyway, we may not be like everyone else but we are most definitely not less than! Differences make this world beautiful if you ask me and the only problem that really worries is not being here for him one day, my guy will most likely never live in his own but you never know and even if he can God willing, I still want to be here for him forever💗👍 ugh hard to write with tears but I'm not unhappy at all, and feel blessed he's mine so I get to live in his awesomeness every day!!!🙋😍😉😁
I'm wondering if others like me, and we are all as different as Neuro typical families or handy capable families but we do have out commonalities and would love to see how you all our handling this living forever thing and getting your healthy on when time is more limited for.many of us?😏
So give me a shout out or just come by to say hi! Look forward to meeting more of my tribe😎😋
That goes for anyone...after all "we are all earthlings" as the song says🌎 lol lil joke of a song we hear over and over and Over in my house😊
Hugs!🌼👍💗😁
Ali
My name is Ali, and I am the proud momma to an amazing, funny, handsome and Active 17 teen year old son! Yup Nick...how'd you guess😋 He is also Autistic and very limited verbally but can get his point across with his many words/phrases and our secret language of mommy and son💞👍
Anyway, we may not be like everyone else but we are most definitely not less than! Differences make this world beautiful if you ask me and the only problem that really worries is not being here for him one day, my guy will most likely never live in his own but you never know and even if he can God willing, I still want to be here for him forever💗👍 ugh hard to write with tears but I'm not unhappy at all, and feel blessed he's mine so I get to live in his awesomeness every day!!!🙋😍😉😁
I'm wondering if others like me, and we are all as different as Neuro typical families or handy capable families but we do have out commonalities and would love to see how you all our handling this living forever thing and getting your healthy on when time is more limited for.many of us?😏
So give me a shout out or just come by to say hi! Look forward to meeting more of my tribe😎😋
That goes for anyone...after all "we are all earthlings" as the song says🌎 lol lil joke of a song we hear over and over and Over in my house😊
Hugs!🌼👍💗😁
Ali
4
Replies
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I am the mother of an 18 year old daughter who has autism. She's funny, frequently goofy and such a sweetie pie. She's also limited verbally; answering questions and making comments but has no real conversation skills. And abstract questions...forget it. But she's smart, musical, and artistic and there is a lot of fun that comes with the challenges.
I do want to be around for her forever as I don't believe she'll ever be independent. The thought of her here without me and my husband is terrifying but we're coping and working on her skills with a lot of support from our fantastic school system. She'll be a "returning senior" until she's 21 while focusing on self-care and vocational skills.
It's always good to talk with those experiencing this similar situation. Thanks for posting!
(our over and over and over song is Bohemian Rhapsody. Thank goodness it's one I like!)2 -
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I am the mother of an 18 year old daughter who has autism. She's funny, frequently goofy and such a sweetie pie. She's also limited verbally; answering questions and making comments but has no real conversation skills. And abstract questions...forget it. But she's smart, musical, and artistic and there is a lot of fun that comes with the challenges.
I do want to be around for her forever as I don't believe she'll ever be independent. The thought of her here without me and my husband is terrifying but we're coping and working on her skills with a lot of support from our fantastic school system. She'll be a "returning senior" until she's 21 while focusing on self-care and vocational skills.
It's always good to talk with those experiencing this similar situation. Thanks for posting!
(our over and over and over song is Bohemian Rhapsody. Thank goodness it's one I like!)
Hahaha! Hugs sister!!! Queen fans here too thankfully Nick loves them and most of my favs or I would happen to "loose" his ipad...he he he! Nooo I would never then all hell would break loose!😈 it's funny he will hand me his ipad and then look off as to try and figure out what he's wanting to hear them start singing... "He said i.was his friends!!!!.....🎶". I'm like for it Nirvana, man whole sold the world got it....then he's listens gives it back and sings in a different higher voice and I'm like...hmmm oh Bowies version?! Bingo he grabs it and off he goes to jam....lol.
It's horrible when I can't figure it out, I.say..keep going buddy...and so now when i.don't get it he says to me, keep.going buddy! LOL! I'm sure you got a million of those too! I mean that's pretty amazing...so what if they aren't conversational?! They are better if you ask me! wicked minds!👍
Thankful for our school system here too, we started out in Boston, and later in middle moved to Brockton mass and both systems have amazing programs for him with life skills etc.....my biggest bad is doing things for him, but only if I know he can do it...otherwise I make him if that resonates lol....I am the weakest link and working on it but even at 17 almost 18 in dec, he's our baby! So I give myself a little leeway! Lol
Love meeting you and hearing your story...time to get out healthy on...I used to feel guilty about taking me time but it really is for him too💗
Hugs and talk soon!!!👍1 -
I am not the mother of a special child but work in a busy NICU and sadly some of our little charges are going to face life ahead being special and needing help in some aspects of their life. I salute the strong and devoted parents and siblings who add so much to the quality of their life. As a proud mother, I would like to add that my eldest daughter is a psychologist specializing in teenagers with Autism and Asperger's.3
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And I'd like to thank her!!!! And you!!!! Such commendable and much needed professions!👍💗. I appreciate you both so.much, your girl has a great.role model!!🌼1
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Read the post before the edit.Womanvsfood18 wrote: »Hi I have
That sounds so hard. I’m glad you’re able to get some bits of time for yourself. I know someone with a teen with similar needs and I wish I could do more to help her.
Take care of yourself.1 -
I am not the mother of a special child but work in a busy NICU and sadly some of our little charges are going to face life ahead being special and needing help in some aspects of their life. I salute the strong and devoted parents and siblings who add so much to the quality of their life. As a proud mother, I would like to add that my eldest daughter is a psychologist specializing in teenagers with Autism and Asperger's.
I have great respect for people who work to help others; particularly with those with special needs. Thank you both!1 -
The great pumpkins on any Charlie Brown fans on there?! our kids or parents?....Nick will watch for the music lol 🎶. Lol...me too🙋👍😋0
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The Great Pumpkin still gives me that "kid" feeling. Old habits from having to wait a whole year to see them when we were younger.
Enjoy!1 -
My boy is definitely verbal, he corrected me on some word usage the other day.
But he has adhd and his physiatrist suspects some sort of anxiety disorder. He also is quite OCD at times. He is insanely smart and talented at music but it's tiring trying to make him a bit more independent. His anxiety means he will follow me around the house often. He did go off to the kids lounge at our club today alone but he feels safe there. When we do "gardening" ie no meds days he's exhausting. I'm sure I have adhd too but it manifests differently
Bedtime is 10:30 on a good day. So my boy isn't really special needs burn he's special and requires a lot of attention. But he's wonderful, friendly, he's smart and clever and I wouldn't trade him for a "normal" kid ever.1 -
AliNouveau wrote: »My boy is definitely verbal, he corrected me on some word usage the other day.
But he has adhd and his physiatrist suspects some sort of anxiety disorder. He also is quite OCD at times. He is insanely smart and talented at music but it's tiring trying to make him a bit more independent. His anxiety means he will follow me around the house often. He did go off to the kids lounge at our club today alone but he feels safe there. When we do "gardening" ie no meds days he's exhausting. I'm sure I have adhd too but it manifests differently
Bedtime is 10:30 on a good day. So my boy isn't really special needs burn he's special and requires a lot of attention. But he's wonderful, friendly, he's smart and clever and I wouldn't trade him for a "normal" kid ever.
Love you my wonder twin 💗 and labels are only for services ya know...you work.just as hard and worry just as much...we get it!👍
I wish 10:30😫 sleep issues are the culprit to many neurological issues...I think from 2 to 4 yrs old my guy would sleep from 8 or 9pm.to 2 or 3am stay up til 6 or 7am😵 I would cry when night fell because I knew what was coming....ah the good o days. Oh and i worked from 9 to 4....😒not a fun.time in Ali land😞
So welcome and thanks for sharing everyone...sometimes we just need to check in with others in the same boat and laugh, vent and cry...
Big hugs tribe💗0 -
The Great Pumpkin still gives me that "kid" feeling. Old habits from having to wait a whole year to see them when we were younger.
Enjoy!
I know!!! That an the wizard of oz!!!! Kids have no idea what patience is these days!!😒 😁 wanna hear how I walked 10 miles in the snow to school?!😊🙋😎1 -
Nicksmom106 wrote: »AliNouveau wrote: »My boy is definitely verbal, he corrected me on some word usage the other day.
But he has adhd and his physiatrist suspects some sort of anxiety disorder. He also is quite OCD at times. He is insanely smart and talented at music but it's tiring trying to make him a bit more independent. His anxiety means he will follow me around the house often. He did go off to the kids lounge at our club today alone but he feels safe there. When we do "gardening" ie no meds days he's exhausting. I'm sure I have adhd too but it manifests differently
Bedtime is 10:30 on a good day. So my boy isn't really special needs burn he's special and requires a lot of attention. But he's wonderful, friendly, he's smart and clever and I wouldn't trade him for a "normal" kid ever.
Love you my wonder twin 💗 and labels are only for services ya know...you work.just as hard and worry just as much...we get it!👍
I wish 10:30😫 sleep issues are the culprit to many neurological issues...I think from 2 to 4 yrs old my guy would sleep from 8 or 9pm.to 2 or 3am stay up til 6 or 7am😵 I would cry when night fell because I knew what was coming....ah the good o days. Oh and i worked from 9 to 4....😒not a fun.time in Ali land😞
So welcome and thanks for sharing everyone...sometimes we just need to check in with others in the same boat and laugh, vent and cry...
Big hugs tribe💗
Our friends with kids the same age would complain their kids only had 4 hours of naps. At just over 1 I figured out my boy would sleep 12 hours. If he napped for 4 during the day he'd sleep for 8 at night. So naps were given up by one and a half.
Luckily I've always been home since he was born but since hubs geta home from work late it made for loooong days.
Darn non napping children. Then again I'm bit a napper so really I can't complain1 -
Hi!!! I'm a mom to two beautiful kiddos. My oldest is developmentally delayed. He has had a lot of challenges when it comes to speech. He was nonverbal until he was four. He is nine now and can articulate what he wants but still a bit behind. It's OK though, I have no doubt he will catch up. For now we just keep on trucking. He is the sweetest, most amazing little boy ever. I dont know what I'd do without him.1
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My son Logan is 11 years old and non-verbal autistic. He uses his few words sparingly, and today's dental check-up was nightmarish. I had to hold him down the whole time while he let out panicked sounds.
Still, we have a lot of good times with our Logan boy, who loves to play chase and has a wonderful laugh.2 -
SylviazSpirit wrote: »Hi!!! I'm a mom to two beautiful kiddos. My oldest is developmentally delayed. He has had a lot of challenges when it comes to speech. He was nonverbal until he was four. He is nine now and can articulate what he wants but still a bit behind. It's OK though, I have no doubt he will catch up. For now we just keep on trucking. He is the sweetest, most amazing little boy ever. I dont know what I'd do without him.
I hear you girl!!! Hugs and so nice to.meet you!! I love meeting moms and dads and families like all of ours because no two snowflakes are alike but they are each so beautiful and unique if you had a chance to look at them and really see them...just like our babies, you'd see just what makes them so incredible...not just snow...not just the special needs...you'd see precious, individual masterpieces!💖 wish the rest of the world could see what we see...then we perhaps would not worry about living forever...well maybe a lil bit😉
Hugs!🌼Ali2 -
Awww😞 I know that is such a nightmare!!! My son has to be put under every 2 yrs to have his teeth done since he was 8...he just could not handle it so his amazing dentist set it up at the Franciscan children's hospital where he does it for us every 2 yrs...people don't realize what we can go through and what our kids go through in some normally ordinary situations. So hugs honey my heart aches for you all!!! and remember having that hard time never ever takes away from all the wonderful fun, joy and love ours kiddos bring us! No matter how old they are or what their limits may be...they are never ever less!!!My son Logan is 11 years old and non-verbal autistic. He uses his few words sparingly, and today's dental check-up was nightmarish. I had to hold him down the whole time while he let out panicked sounds.
Still, we have a lot of good times with our Logan boy, who loves to play chase and has a wonderful laugh.
Big hugs for the rough day...a good one is right around the corner and you are a great mom!!!👍😘1 -
AliNouveau wrote: »Nicksmom106 wrote: »AliNouveau wrote: »My boy is definitely verbal, he corrected me on some word usage the other day.
But he has adhd and his physiatrist suspects some sort of anxiety disorder. He also is quite OCD at times. He is insanely smart and talented at music but it's tiring trying to make him a bit more independent. His anxiety means he will follow me around the house often. He did go off to the kids lounge at our club today alone but he feels safe there. When we do "gardening" ie no meds days he's exhausting. I'm sure I have adhd too but it manifests differently
Bedtime is 10:30 on a good day. So my boy isn't really special needs burn he's special and requires a lot of attention. But he's wonderful, friendly, he's smart and clever and I wouldn't trade him for a "normal" kid ever.
Love you my wonder twin 💗 and labels are only for services ya know...you work.just as hard and worry just as much...we get it!👍
I wish 10:30😫 sleep issues are the culprit to many neurological issues...I think from 2 to 4 yrs old my guy would sleep from 8 or 9pm.to 2 or 3am stay up til 6 or 7am😵 I would cry when night fell because I knew what was coming....ah the good o days. Oh and i worked from 9 to 4....😒not a fun.time in Ali land😞
So welcome and thanks for sharing everyone...sometimes we just need to check in with others in the same boat and laugh, vent and cry...
Big hugs tribe💗
Our friends with kids the same age would complain their kids only had 4 hours of naps. At just over 1 I figured out my boy would sleep 12 hours. If he napped for 4 during the day he'd sleep for 8 at night. So naps were given up by one and a half.
Luckily I've always been home since he was born but since hubs geta home from work late it made for loooong days.
Darn non napping children. Then again I'm bit a napper so really I can't complain
Naps...now that is where it's at baby!!!😍 too bad my kiddo was like naps shmaps I don't need no stinkin naps woman!! 😒😜0 -
My late daughter was 28 when she passed, cerebral palsy quadreplegia, asthma, tube feed, on oxygen, we miss her so much, she would have been 43 now she passed when she was 28. I'm very grateful I was always her to look after her 24/7.
Bless you all you are doing a great job for your children/adults5 -
dejavuohlala wrote: »My late daughter was 28 when she passed, cerebral palsy quadreplegia, asthma, tube feed, on oxygen, we miss her so much, she would have been 43 now she passed when she was 28. I'm very grateful I was always her to look after her 24/7.
Bless you all you are doing a great job for your children/adults
I wish I could hug you in real life!!!💔💗 my tears for you are because you were always there for her and now she's your own personal 👼!!!! Please know you are still in our tribe!!! Much love and tears and thanks for your story sweetheart!!!! She is too.😘😇💔💗💞👍😘
I can even comprehend how strong you are or your pain...but you are amazing!!!!.thank you for sharing and your kind words!!!💗💔👍
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Hi everyone! I am the proud mommy of 2 kids. The littlest one (who we affectionately call Littlest) is 4 and non-verbal autistic. I have NO idea what the future holds. He is a little ball of sunshine, but ugh I just wish I knew what his path would be. He actually does have a couple words like "No, tickle, dad, mom, and GO". Go is his favorite because he loves to be on the go lol. Last week, his doctor and the Kennedy Krieger CARD said "He's going to talk". Not even maybe, but YES he will talk. I don't know how she knows but she's been working with autistic kids for decades!
It's so nice to meet all you lovely ladies!2 -
erikarunsforherlife wrote: »Hi everyone! I am the proud mommy of 2 kids. The littlest one (who we affectionately call Littlest) is 4 and non-verbal autistic. I have NO idea what the future holds. He is a little ball of sunshine, but ugh I just wish I knew what his path would be. He actually does have a couple words like "No, tickle, dad, mom, and GO". Go is his favorite because he loves to be on the go lol. Last week, his doctor and the Kennedy Krieger CARD said "He's going to talk". Not even maybe, but YES he will talk. I don't know how she knows but she's been working with autistic kids for decades!
It's so nice to meet all you lovely ladies!
It's scary to not know what's going to happen. Even now with an 18 year old I worry. But we always have little milestones along the way to keep us encouraged. Having another child around to model speech helps too. I only have the one child and I think that made things harder for her though it would have been too much for me.
It's nice to meet you as well. Your "littlest" sounds adorable.1 -
erikarunsforherlife wrote: »Hi everyone! I am the proud mommy of 2 kids. The littlest one (who we affectionately call Littlest) is 4 and non-verbal autistic. I have NO idea what the future holds. He is a little ball of sunshine, but ugh I just wish I knew what his path would be. He actually does have a couple words like "No, tickle, dad, mom, and GO". Go is his favorite because he loves to be on the go lol. Last week, his doctor and the Kennedy Krieger CARD said "He's going to talk". Not even maybe, but YES he will talk. I don't know how she knows but she's been working with autistic kids for decades!
It's so nice to meet all you lovely ladies!
I am sot happy to meet you!!!!😘
What wonderful news! Just stay positive girl, sometimes you don't immediately see the silver lining but its there...even in heart ache...especially in joy💞
I have news for you and littlest btw....(love that nickname!!!) Your little guy on the go will almost likely be a on the go ALWAYS!!! Lol🏃 he sounds like my wild child lol we called him Spider-Man cuz he literally climbed walls....well door ways ....we'd just walk under him to get in a room haha...ah the good o days! Good luck and enjoy because it's a blast!👍😁😋
Hugs🌼
Ali
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Hope all of you are taking good care of yourselves today!!!🙋👍💪
It's not only gonna help you help them but also will make you feel sooo good....even though my mind is telling the brownies i made for company would be okay with one missing...in my belly😏 😁 and also be soooo good for me😋0 -
erikarunsforherlife wrote: »Hi everyone! I am the proud mommy of 2 kids. The littlest one (who we affectionately call Littlest) is 4 and non-verbal autistic. I have NO idea what the future holds. He is a little ball of sunshine, but ugh I just wish I knew what his path would be. He actually does have a couple words like "No, tickle, dad, mom, and GO". Go is his favorite because he loves to be on the go lol. Last week, his doctor and the Kennedy Krieger CARD said "He's going to talk". Not even maybe, but YES he will talk. I don't know how she knows but she's been working with autistic kids for decades!
It's so nice to meet all you lovely ladies!
It's scary to not know what's going to happen. Even now with an 18 year old I worry. But we always have little milestones along the way to keep us encouraged. Having another child around to model speech helps too. I only have the one child and I think that made things harder for her though it would have been too much for me.
It's nice to meet you as well. Your "littlest" sounds adorable.
Nicholas is my only too.....wanna be roomies?! 😄😉😁1 -
Hello Ali,my eldest son is 17 and is affected by dyspraxia and Asperger's - I totally understand how you feel about the future (as well as doing too much for him!). I teach youngsters in the 7-9 year old range and work with some wonderful individuals who see the world differently - finding new ways to unlock their potential is hugely rewarding.1
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Cant_think_of_a_username wrote: »Hello Ali,my eldest son is 17 and is affected by dyspraxia and Asperger's - I totally understand how you feel about the future (as well as doing too much for him!). I teach youngsters in the 7-9 year old range and work with some wonderful individuals who see the world differently - finding new ways to unlock their potential is hugely rewarding.
Oh thank you for your dedication as a parent and educator!!! You are amazing and an inspiration!🌼👍 I think hope in our kids is something that never lessons no matter where they fall in life's ability scale😉👍😘
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I've been a Full-Time Dad to a special needs daughter for the past 5 years. She was born 9 weeks premature from a Urogenital Malformation, had a stroke from the trauma of her birth giving her Cerebral Palsy, and has been developmentally delayed from various complications over the first few years of her life. On top of this, she was a Dec 26th, baby dumping into the school system a year earlier than she should be (prematurity irrelevant), but don my super shirts to fight for her needs daily and get her the support she needs to be her best!
She's now 5 1/2 and settling well into her first year of Kindergarten and I couldn't be happier at seeing her grow and develop.4 -
I wish you the best Super Dad!0
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