Special Needs Moms Unite! :D

[Ibbygirl]

I confess that I thought about making this an Autism Moms Unite thread because that is what I am mostly dealing with at home and what I'm familiar with, but I realized as I was thinking it over that ALL of us "special" families are in the same boat. We are gawked at, misunderstood and misjudged. We have first hand experience with the grief that comes from a diagnosis, the protectiveness that comes from knowing our dear ones will struggle in life and the pain and frustrations of daily struggles as we try our best to care for these special kids. If you're like me you know the feeling of being lost and just hoping that what you are doing is right. Most people cannot even imagine the things that we deal with on a daily basis. It is a HARD calling!! We are well familiar with the difficulties of raising a child with special needs, but what about the blessings? We, more than most, need encouragement and that is why I wanted to start this thread. I thought if we could talk about the good things about having a special needs child, that it might be just the sort of inspiration and encouragement that someone (anyone of us on certain days) might need to hear.

 

So what joys/blessings have you experienced BECAUSE your child has special needs?

 

I have an 8 y.o. non-communicative son with severe Autism and an 11 y.o. daughter with Asperger's, OCD and ADHD.

 

My daughter is so fixated on rules, that because of it, she never lies, never steals, never jaywalks because she knows that these things are wrong! hehe Chock one up for legalism! hehe

 

Because her brother is so severely Autistic there is absolutely no sibling rivalry in my home. Daughter chatters away non-stop, son says nothing at all. :D She puts hats on him and dresses him up and he is just there at her mercy. But we found out because of her, that he actually likes to wear hats even if it is a ladies hat. hehe

 

My son is sooo cute and because of his Autism, it keeps him "little" for such a long time. He's 8 years old and yet I can still hold him like a baby and cuddle him when he gets home from school. He likes the cuddles and will even seek me out for cuddles when he wants them. What typical 8 year old boy wants his mom to kiss him and hold him like that?? ;) :D

 

As much as special needs kids can be a strain on the marriage and the entire family, it has forced my husband and I to learn to work together. I know I can't do it on my own, and he can't either so we have had to learn to work as a team out of necessity and that has made us a better couple and a stonger, closer family.

 

My church sent our entire family to a Joni and Friends Retreat last year and they paid for the entire thing! 5 days with all 3 meals and 2 rooms for all 4 of us. They had boating activities, fishing, karate, arts, crafts, paintball, bounce houses, water slides and did I mention BABYSITTING!! I actually got to take a NAP!! Twice!! And it was all free! I would have never had a blessing like that if it weren't for my precious kids.

 

I could go on and on about how much I love my kids and why I think they are so amazingly brave and strong and awesome in the face of adversity, but I want to hear about YOUR kids.

 

What makes your special one so special??

Edited April 30, 2009 by Ibbygirl

[HeidiD]

I enjoyed reading your post - it's nice to be reminded that we're not alone out here, slogging along with our daily struggles. And with two ASD kids, you surely have your hands full, which makes your ability to see the bright side all the more inspiring. :)

 

I have one ASD child, and two with other LD's, as well as "typical" children both older and younger. Lots of challenges, lots of struggles, but I've come to see that our particular struggles have made us stronger, more determined, more resilient and have definitely strengthened our faith in God. :)

[kim973]

I have a son with Asperger’s and although there have been many challenging moments, I have learned so much from him and it’s made me a better person.

One thing I like is how affectionate he is. He hugs me almost all the time (except when he’s having a really bad day or if he’s mad at me) and tells me how much he loves me. We HAVE to hug if we leave each other, when we first see each other again and at bedtime. He’s really become expressive lately and tells me how much he appreciates me. However, I do get the exact opposite many times also.

He’s so curious and busy all the time. He’s helped me to see the world in many new ways.

[happygrrl]

My son is sooo cute and because of his Autism, it keeps him "little" for such a long time. He's 8 years old and yet I can still hold him like a baby and cuddle him when he gets home from school. He likes the cuddles and will even seek me out for cuddles when he wants them. What typical 8 year old boy wants his mom to kiss him and hold him like that?? ;) :D

 

 

 

Oh yeah! My oldest, at 11, still needs mom and dad to cuddle and hug with him every day.

 

The other day he freaked out that I was dusting away spiders ("they are alive, mom!"). I was suddenly attentive of the miracle of life. Too many times I am so busy I miss the value his perspective. Thanks for reminding me to slow down and take joy in it!

[Ibbygirl]

I enjoyed reading your post - it's nice to be reminded that we're not alone out here, slogging along with our daily struggles. And with two ASD kids, you surely have your hands full, which makes your ability to see the bright side all the more inspiring. :)

 

I have one ASD child, and two with other LD's, as well as "typical" children both older and younger. Lots of challenges, lots of struggles, but I've come to see that our particular struggles have made us stronger, more determined, more resilient and have definitely strengthened our faith in God. :)

 

 

That's awesome. Wow! You have a lot of kids. That in itself is a struggle, let alone with ASD and LD kids. God bless you. Thank you so much for sharing.:)

[Ibbygirl]

I have a son with Asperger’s and although there have been many challenging moments, I have learned so much from him and it’s made me a better person.

 

One thing I like is how affectionate he is. He hugs me almost all the time (except when he’s having a really bad day or if he’s mad at me) and tells me how much he loves me. We HAVE to hug if we leave each other, when we first see each other again and at bedtime. He’s really become expressive lately and tells me how much he appreciates me. However, I do get the exact opposite many times also.

 

He’s so curious and busy all the time. He’s helped me to see the world in many new ways.

 

 

Awww that is soo sweet.:grouphug: My son is just so cute that we're always all over him. He's so accustomed to us calling him to give him a hug that whenever we call him over to us he gives us a hug. hehe He's just soo sweet.. my daughter too. Such pure and sweet people. There's no schemeing or manipulation just what you see is what you get. I like that. My kids have taught me so much too. They too have taught me how to love and how to be patient and also how to stand up for them when we are out in public and some person oversteps the line and I have to tell them so. My son squawks all the time and flaps his arms so we get a lot of looks when we are out shopping somewhere, but I have learned to use it as an opportunity to spread awareness and to hopefully educate people. I usually get a good response from people too which is nice. :)

[Ibbygirl]

Oh yeah! My oldest, at 11, still needs mom and dad to cuddle and hug with him every day.

 

The other day he freaked out that I was dusting away spiders ("they are alive, mom!"). I was suddenly attentive of the miracle of life. Too many times I am so busy I miss the value his perspective. Thanks for reminding me to slow down and take joy in it!

 

 

Aww, that's so great! God bless his heart! :grouphug:

[specialmama]

Ibbygirl, I could have written 95% of your post! It's funny, I've seen your posts around and always felt comfortable (for lack of a better word) and perhaps there's more reasons than meets the eye.

 

My boy will be turning 8 next month. He has severe autism. He's a snuggly guy too, and just loves his squeezes. I treasure him because although he's 7, he's still very much a toddler who lifts his arms and says "mommy, up!" or "I want tickles" or "I want giraffe sandwich!" His current "thing" is colouring his nose with green markers. Yes, he's a fan of Max Lucado. :tongue_smilie: We hid the markers a few weeks ago, but every day he still manages to colour his nose. His entire nose too, even that bridge of skin between the nostrils. He does a meticulous job!

 

My boy is verbal, although it is mostly echolalia or things he's learned via programming/IBI/ABA. He independantly began spelling big words with fridge magnets at the age of 2, and when he was 3 he began talking and asking me to draw what he spelled. I'll never forget the day he spelled "McNeil's Aerodynamic Machinery" and asked me to draw it! :001_huh:

 

Fastforward to today, and I have a very talented little chap who makes awesome slide show presentations on the computer, complete with sound effects and animation. He can mimic almost any movie production logo to a tee, and has Walt Disney's signature down to a science! He is just fascinated with all movie production companies and all Veggie Tales movies and Disney movies. Well, not all, because we don't have all the Disney movies, just the good ones. Last summer he watched Beauty & The Beast almost every day. One day he stood up, turned the t.v. off, huffed out his chest with hands on his hips and declared with all the gusto he could conjure up: "I will have Belle as my wife!" I laughed, and said, "oh buddy, you can do better than her!" :lol: Ya, he's always taking lines from movies like that and usually it's quite funny!

 

His communication and social skills are waaay low, between 14mths and 24mths of age, and apart from a miracle of God, he will always need constant supervision. He just bolts for any body of water, and is too fascinated with lisence plates on vehicles, whether the car is stationary or not. He has zero understanding of safety or consequences. He's just my little luv bug who loves cuddling and making his mama feel lucky and blessed to have a snuggly baby for so long! :001_wub:

 

His older sister is a therapist-wanna-be. She's spent enough time in ABA sessions with him to know (mostly) how to interact with him and how to teach him things. She alone taught him how and when to say "thank you" and "excuse me". She's an awesome big sister and I'm so proud of her! She's a chatterbox herself, never. stopping. to. breath. I'm fairly certain she may have ADHD as it is very difficult (if not impossible) for her to sit and work without constantly moving or getting sidetracked. We have not gone after a diagnosis for her, but I did recently call our dr. to make an appt. to discuss the possibility of a dx. I think I'd like to try her on a focusing med for 2 weeks, just to see what happens. Imagine the school we could get done if she actually sat and concentrated! :w00t: We'll see if the pros outweight the cons in her situation.

 

Oh, and she loooooves to dress her (again, very complacent) brother in ballet tutus, crowns, rings, feather boas, you name it. Dad is not too impressed. :toetap05:

[Ibbygirl]

Ibbygirl, I could have written 95% of your post! It's funny, I've seen your posts around and always felt comfortable (for lack of a better word) and perhaps there's more reasons than meets the eye.

 

My boy will be turning 8 next month. He has severe autism. He's a snuggly guy too, and just loves his squeezes. I treasure him because although he's 7, he's still very much a toddler who lifts his arms and says "mommy, up!" or "I want tickles" or "I want giraffe sandwich!" His current "thing" is colouring his nose with green markers. Yes, he's a fan of Max Lucado. We hid the markers a few weeks ago, but every day he still manages to colour his nose. His entire nose too, even that bridge of skin between the nostrils. He does a meticulous job!

 

My boy is verbal, although it is mostly echolalia or things he's learned via programming/IBI/ABA. He independantly began spelling big words with fridge magnets at the age of 2, and when he was 3 he began talking and asking me to draw what he spelled. I'll never forget the day he spelled "McNeil's Aerodynamic Machinery" and asked me to draw it! :001_huh:

 

Fastforward to today, and I have a very talented little chap who makes awesome slide show presentations on the computer, complete with sound effects and animation. He can mimic almost any movie production logo to a tee, and has Walt Disney's signature down to a science! He is just fascinated with all movie production companies and all Veggie Tales movies and Disney movies. Well, not all, because we don't have all the Disney movies, just the good ones. Last summer he watched Beauty & The Beast almost every day. One day he stood up, turned the t.v. off, huffed out his chest with hands on his hips and declared with all the gusto he could conjure up: "I will have Belle as my wife!" I laughed, and said, "oh buddy, you can do better than her!" :lol: Ya, he's always taking lines from movies like that and usually it's quite funny!

 

His communication and social skills are waaay low, between 14mths and 24mths of age, and apart from a miracle of God, he will always need constant supervision. He just bolts for any body of water, and is too fascinated with lisence plates on vehicles, whether the car is stationary or not. He has zero understanding of safety or consequences. He's just my little luv bug who loves cuddling and making his mama feel lucky and blessed to have a snuggly baby for so long! :001_wub:

 

His older sister is a therapist-wanna-be. She's spent enough time in ABA sessions with him to know (mostly) how to interact with him and how to teach him things. She alone taught him how and when to say "thank you" and "excuse me". She's an awesome big sister and I'm so proud of her! She's a chatterbox herself, never. stopping. to. breath. I'm fairly certain she may have ADHD as it is very difficult (if not impossible) for her to sit and work without constantly moving or getting sidetracked. We have not gone after a diagnosis for her, but I did recently call our dr. to make an appt. to discuss the possibility of a dx. I think I'd like to try her on a focusing med for 2 weeks, just to see what happens. Imagine the school we could get done if she actually sat and concentrated! :w00t: We'll see if the pros outweight the cons in her situation.

 

Oh, and she loooooves to dress her (again, very complacent) brother in ballet tutus, crowns, rings, feather boas, you name it. Dad is not too impressed. :toetap05:

 

:lol:Oh Karyn. Thank you so much for your post. I thought about quoting the certain things that you said that struck me, but it's the whole thing really. hehehe I can SO relate to your kids. Actually, my son sounds exactly like yours except he doesn't talk. He does do echolalia though. Just now, there was something on the tv that started him jumping and crying and when I went over to him to calm him down, he just looked at me with a totally distressed and freaked out face and said, "Nova Science Now." hehehe My Youtube account's favorites are all PBS logos, the beginning credits for Nova, the ending credits for various shows. hehehe I don't know WHO puts that stuff up on youtube, but I'm so grateful to them for doing it. I often wonder if it is and Autistic person doing it, or someone who has Autistic kids. hehehe

 

I knew what you meant right away when you said your son colors his nose green. That's just too cute! hehehe and the "I will have Belle as my wife!" put me in stitches. hehehe Ay, these kids are so great! So hard, but so great at the same time. hehehe

 

My daughter too is a really good big sister. Even though she has her own issues that she is dealing with, she is still so loving and protective of her brother. She always wants people to meet him and she's really really good and patient with little kids especially if they have a disability. She's awesome too. I wonder too how much quicker school would go with her if I had a dx too! hehehe Let me know how it works for ya. :)

 

:grouphug:

 

God bless you and your precious family.

 

Jen

[Mom22ns]

The echolalia really takes me back. I remember the first time my ds went to the speech therapist for an evaluation when he was three. He greeted her with "Well, Hello Pooh." in a perfect singsong Rabbit voice. He could communicate with me, but to understand him you had to speak his language.

 

The things that are special to me about raising a special needs kid... Wow, that is a big question. My ds is special in just as many ways as my dd. He definitely made me a better parent. I think I spend more time looking for the positives and learned to be more accepting of others and their differences because of ds. When he was younger he was all about the cuddles, and he loved deep pressure, so we got a lot more hugs and cuddles and holding than with my nt dd. He has outgrown all that though. Now he is just a typical 12 yo. boy and cool is more important that cuddly. We still face challenges, but he has taught me to face them one day at a time and to look at his accomplishment not at what is missing.

[elise1mds]

The other day he freaked out that I was dusting away spiders ("they are alive, mom!"). I was suddenly attentive of the miracle of life. Too many times I am so busy I miss the value his perspective. Thanks for reminding me to slow down and take joy in it!

 

 

I get this one! My son's diagnosis is currently ADHD, though it's looking more like Asperger's every day, and he CRIED a couple of weeks ago when he realized that we can't let slugs and snails live in our garden if he wants his plants to live. After a presentation at his school (currently in a private K, but he'll be homeschooled this fall) on Earth Day, he broke down about having to throw out a yogurt cup. We *do* recycle quite a bit, but of course not everything gets to go.

 

He's also my one to point out to me all the little details that I miss, like the dewdrops on the giant cobweb strung... all over the outside of our living room window. He just loves beauty and nature.

 

It makes me want to cry just thinking about his wonderful little soul!

 

Thanks for the thread :)

[Ibbygirl]

The echolalia really takes me back. I remember the first time my ds went to the speech therapist for an evaluation when he was three. He greeted her with "Well, Hello Pooh." in a perfect singsong Rabbit voice. He could communicate with me, but to understand him you had to speak his language.

 

The things that are special to me about raising a special needs kid... Wow, that is a big question. My ds is special in just as many ways as my dd. He definitely made me a better parent. I think I spend more time looking for the positives and learned to be more accepting of others and their differences because of ds. When he was younger he was all about the cuddles, and he loved deep pressure, so we got a lot more hugs and cuddles and holding than with my nt dd. He has outgrown all that though. Now he is just a typical 12 yo. boy and cool is more important that cuddly. We still face challenges, but he has taught me to face them one day at a time and to look at his accomplishment not at what is missing.

 

hehe Is echolalia a stage in their communication development?? Does actual expressive speech come after that stage? My son started totally silent, then he went to jargon, then jargon with some echolalia and now his is mostly echolalia and some words like "pizza" "juice" "cheerios". That's really all he says.

 

I have a funny with him and the echolalia... He LOVES Veggie tales. They are his favorite thing in the world and he has everything veggie tales, books, toys, you name it he's got it. Well, they came out with a new Veggie Tales Bible and my son knew about it right away because he recognizes the way the Christian catalog looks so he grabs it right away when it comes in the mail and looks for all the Veggie Tales pictures. We haven't bought the Bible for him because he has a tendency to rip up his books. That's fine for books off ebay or whatever, but I draw the line at the Bible. So we were in Barnes and Noble the other day and he went right away to the kid's section and he found the Veggie Tales Bible. He was looking through the pages and looking and then when it was time to go, he grabbed the book held tightly to his chest and started walking up towards the registers. hehe My husband took it from him and put it back on the shelf and my son started getting upset and said quoted from the Veggie Tales Esther DVD, "You can't do this to me! I'm the queen!!" lol:lol:

[Ibbygirl]

It makes me want to cry just thinking about his wonderful little soul!

 

 

 

 

I know exactly how you feel. These kids are just so precious!! When we first were struggling with them we used to cry out to God and say, "God why us??" and now after allowing ourselves to be changed by what they have to teach us and by just having the honor and the blessing to know them and have their love we look up and say, "God why us??" They're difficult and they struggle so much, but they are just so awesome. I feel so blessed to have them in my life. :)

[Mom22ns]

hehe Is echolalia a stage in their communication development?? Does actual expressive speech come after that stage? My son started totally silent, then he went to jargon, then jargon with some echolalia and now his is mostly echolalia and some words like "pizza" "juice" "cheerios". That's really all he says.

 

I have a funny with him and the echolalia... He LOVES Veggie tales. They are his favorite thing in the world and he has everything veggie tales, books, toys, you name it he's got it. Well, they came out with a new Veggie Tales Bible and my son knew about it right away because he recognizes the way the Christian catalog looks so he grabs it right away when it comes in the mail and looks for all the Veggie Tales pictures. We haven't bought the Bible for him because he has a tendency to rip up his books. That's fine for books off ebay or whatever, but I draw the line at the Bible. So we were in Barnes and Noble the other day and he went right away to the kid's section and he found the Veggie Tales Bible. He was looking through the pages and looking and then when it was time to go, he grabbed the book held tightly to his chest and started walking up towards the registers. hehe My husband took it from him and put it back on the shelf and my son started getting upset and said quoted from the Veggie Tales Esther DVD, "You can't do this to me! I'm the queen!!" lol:lol:

 

:lol::lol::lol:

 

I love that one! If he is using echolalia to actually express himself (and clearly he is :lol:) then it will probably grow into real language. The sad thing for us was in order to get to real language we had to take away all videos. That way he had nothing but us to echo. He still echoed books, anything he heard more than once, but it really helped his language development. At ages 3-4 ds had only echolalia and the labeling of nouns. Now, you would never know he had a language delay at all.

[Dobela]

We are just beginning this journey. My son is having serious struggles and we don't quite know what they are yet. My dd was born very premature and has global delays. However, my dh and I believe in finding joy and positives where ever we can.

 

One of the biggest reasons we look for the positive is because we want to be different form my mom. I have an adult brother with Austism. My mom can share no happy memory, no positive story, she can't encourage other families or give them support... She is a walking gloom. All she can talk about is how difficult it has been and how terrible her life has been because of it. And I find that so sad.

[Ibbygirl]

:lol::lol::lol:

 

I love that one! If he is using echolalia to actually express himself (and clearly he is :lol:) then it will probably grow into real language. The sad thing for us was in order to get to real language we had to take away all videos. That way he had nothing but us to echo. He still echoed books, anything he heard more than once, but it really helped his language development. At ages 3-4 ds had only echolalia and the labeling of nouns. Now, you would never know he had a language delay at all.

 

 

Cool!! That is very encouraging to hear. Hopefully he'll move on to genuine expression sometime soon. He does use echolalia to express himself all the time. :) Thanks so much for giving me something to look forward to! :D

[Ibbygirl]

We are just beginning this journey. My son is having serious struggles and we don't quite know what they are yet. My dd was born very premature and has global delays. However, my dh and I believe in finding joy and positives where ever we can.

 

One of the biggest reasons we look for the positive is because we want to be different form my mom. I have an adult brother with Austism. My mom can share no happy memory, no positive story, she can't encourage other families or give them support... She is a walking gloom. All she can talk about is how difficult it has been and how terrible her life has been because of it. And I find that so sad.

 

:grouphug::grouphug::grouphug::grouphug::grouphug: I know how you feel. I didn't have a prize winning mom either. But that's great that you recognize what you want to do different and are doing it. I'm doing the same thing. :) It's so hard when you first start the journey. Feel free to PM me anytime you want if you need to rant, or a shoulder to cry on. If I can help you in any way I will be happy to. :grouphug:

 

jennifer

[jensway]

I had to give this some thought, as there are so many experiences that I could write about with my Aspie son. I have learned so much from him and continue to do so almost daily. As with any special kiddos we have our really good days and our really bad days. :001_smile:

 

I believe I've narrowed my learning experiences down to a few basics. On bad days I've learned that I need to have and give patience to everyone continually. These days also teach me not to sweat the small stuff.

 

The good days continue to show me how to embrace all with joy and wonderment. Also that there is no room for judgement of anyone, as it destroys my inner peace.

[Mom22ns]

Cool!! That is very encouraging to hear. Hopefully he'll move on to genuine expression sometime soon. He does use echolalia to express himself all the time. :) Thanks so much for giving me something to look forward to! :D

 

It is amazing to me to look back and remember that we had years - yes years, that ds had no language besides echolalia and some labeled nouns. Language grew very slowly from there, then gained momentum. Now he talks constantly and is really just a pretty normal pre-teen. He is socially immature, academically on track or above level depending on the subject. He is a great kid and we have tried to savor every step of the journey. Some have been harder than others, but they just make the celebrations bigger when you cross those bridges.

 

I can't look into your dc's future, but I would expect the language to progress. I have no idea how far he will go, but enjoy the journey - its priceless.

[Ibbygirl]

I just had to resurrect this thread in order to add a new one that my Autistic ds did yesterday. FIL is visiting from Santo Domingo and dh was talking to him on the phone last night telling him that he was going to come over to visit (fil stays at sil's house when he comes). My dh was on the phone saying "si." "si." and ds heard him and then said "c" "c" and started singing "a says a" "b says buh" "c says ca" lol It was too cute. :D

[Year Round Mom]

Thanks for resurrecting this thread, Ibbygirl, because it was started before my son's dx of AS!

 

Now, when he says "I love you, Junior's mom" (Junior being the asparagus boy on Veggie Tales), I can say, "I love you, too, Junior", instead of, "No, honey, I'm not Junior's mom, I'm your mom."

 

He loves that book "I'll Love You Forever" (I think it's called) and he often climbs up on my lap when I'm in the glider. He'll rock us back and forth, back and forth. While we rock, I tell him, "I'll love you forever; I'll like you for always; As long as I'm living, My baby you'll be!"