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Related: Culture Forums, Support ForumsAn Update on my grandson.
Well, we got the word yesterday: it's Autism. Well technically it's 'Autism Spectrum Disorder', but you get the idea. I'm glad that we finally have a name for it, and that now we can proceed with the things that need to be done.
I ask now for some good old fashioned lounge vibes. We're all in shock, even though it was the expected diagnosis. I'm worried that we're not up to the task. Any advice would be greatly appreciated.
and here is the obligatory, 'oh-my-god-he's-so-cute!' picture:
Tsiyu
(18,186 posts)I'm sorry to hear of his diagnosis, but glad - like you - that you have some answers now.
Hugs to everyone
From The Ashes
(2,630 posts)We're taking this one day at a time.
Thanks for the hugs.
LiberalEsto
(22,845 posts)This is a big challenge, but it sounds like you and your family are prepared to handle it.
From The Ashes
(2,630 posts)I hope we can handle it. It's overwhelming right now.
Swede
(33,282 posts)Vibes to you and yours.
From The Ashes
(2,630 posts)Tuesday Afternoon
(56,912 posts)vibes to him and you and all the family.
From The Ashes
(2,630 posts)He's my little sweet pea.
rurallib
(62,448 posts)From The Ashes
(2,630 posts)polly7
(20,582 posts)bigwillq
(72,790 posts)My boyfriend's had custody of his nephew, who is autistic, since nephew was 4. He's 14 now and is living as normal of a life as possible. And boyfriend is doing this as a single parent, and raising a biological kid and two foster children to boot!
Yes, he's a cutie!
Good Luck!
From The Ashes
(2,630 posts)it's just so much to deal with, but your story gives me hope.
suninvited
(4,616 posts)At the time he had many of the typical symptoms: erratic but rigid behavior at times, spinning in circles, looking out of the corner of his eyes, lining things up or putting everything movable in a room in one big pile, very picky about food, hypersensitivity to touch (didn't like dirt or anything gooey on his fingers), and most of all, he didn't speak. At all.
I stay home with him during the day, and work nights while his mother is home with him. I take him to therapy four times a week, two with the speech therapist and two with the occupational therapist. Luckily we have the state insurance for kids.
I spend a lot of time with him playing games that are helpful to his needs and so does his mother. He goes to preschool 12 hours a week and it has helped greatly with his social needs.
At first he did use sign language and still uses sign language for the word "potty" even though he can say it now.
I started doing some work with him that I had taken a workshop on eleven years ago called EFT and we have seen major, major improvement in his sleeping habits and temper tantrum throwing.
Hard work and dedication do pay off!
This morning we were watching a phonics video that showed letters and words that started with each letter. He was repeating each word except octopus (too hard!). He is reading more than he can talk and is starting to count. He is saying short phrases, bye bye, Cindy, Night Night Nana, etc.
Everyone has marveled at his progress.
We still have a lot of work to do on diet as he still will only eat a very few foods. He has never eaten meat of any kind and refuses to.
Keep your chin up and good luck. Enjoy him for the unique person that he is and strive to help him become the most that he can be.
Here is a picture of my grandson right before Christmas, he is 2 1/2.
From The Ashes
(2,630 posts)His schedule sound much like the one they have set up for my grandson.
If I could ask: what is EFT? It sounds helpful.
suninvited
(4,616 posts)Don't ask me how or why it works, because I don't know.
One day I was desperate to get Travis to go to sleep because he had to go to preschool that afternoon but nothing was working. He couldn't settle down, became obsessed with getting out of bed and grabbing objects to bring to bed and I laid down with him and started rubbing his head. For some reason the EFT came into my head and I started doing it. I just tapped all the points gently and sang twinkle twinkle little star to him. He got up and got his blanket and then told me night night and got into bed and fell sound asleep.
He went from naptime being a miserable affair to becoming just part of the daily routine in one day. Also within a week of doing it his vocabulary went from about five words to about twenty. Temper tantrums are ALMOST a thing of the past.
Google EFT for autism. There are also some youtube videos.
The EFT stands for emotional freedom technique. I took a workshop years ago right before I was going to drive to Miami and I focused on my fear of driving over bridges. I had a real phobia about bridges which disappeared after the workshop and is gone to this day.
mzteris
(16,232 posts)It doesn't seem to be very active - especially on DU3, but just wanted you to know.
he's a real cutie!
From The Ashes
(2,630 posts)I put it under my subscriptions. Thanks mzteris.
KamaAina
(78,249 posts)Yes, "our" world. There are a number of other Autsitic people at DU, some of whom post in the Asperger's/PDD group mentioned above.
http://www.democraticunderground.com/?com=forum&id=1145
From The Ashes
(2,630 posts)I hope you won't mind the occasional question?
KamaAina
(78,249 posts)But you could always put it to the forum. Things are a lot different (and BETTER!) now for him than they were for me back in the Dark Ages 40 years ago.
hunter
(38,326 posts)I have a family tree full of people who were quietly hidden away. My grandparents' generation didn't talk about them. Some are still showing up on the internet. A fascination with networks seems to be part of the family syndrome. I actively avoid a few of them, maybe because their madness is too similar to my own. We can be relentless when we've got a bee up our butt.
I like to think I sorted my own failures out in my very turbulent college years. I was asked to leave college twice to get my, um, shit together. My grandfather was an insanely creative engineer and problem solver, the guy they always went to when all else failed, but his personal life was always a flaming exploding disaster. Maybe that's why he liked rockets.
My own modern diagnosis is Asperger's & Major Depressive Disorder. It's not an especially useful diagnosis for an adult, more like a working hypothesis for me and my doctors and therapists to work with.
In school I was just a weird kid who was always in trouble. I had speech therapy grades K-2. I remember those classes fondly because they got me out of the regular noisy confusing classroom. Middle school and high school were my personal hell. I was a weird kid and a frequent victim of bullying. There were teachers I got along with, and I'd be very successful in their classes, but other teachers hated me. I was impossible to "discipline." I'd just run away. Literally. Out the door as fast as my feet would carry me. I quit high school as soon as I could because I was so miserable. College was much better simply because the physical violence was gone. I didn't have to worry about getting physically assaulted, and nobody was lying in wait to smack me in the head and call me "queerbait."
It's much better for kids today. I've got nieces and nephews (and whisper, whisper, maybe my own kids) who are a little odd, and it seems to be a dominant gene my grandpa gave us. If one of our kids gets shuffled of into speech therapy and has other problems in school, well, there it is, grandpa's madness! I love them all, and I hope the never suffer the isolations and indignities their ancestors did. So far my generation seems to be doing pretty well keeping it out of the dark closets.
Best wishes to your grandson! Love him madly forever... even when he screws up. I've been very fortunate in my life to have people who love me in spite of the craziness.
From The Ashes
(2,630 posts)not to paint with a broad brush, but I've noticed that people are not particularly kind to those who are different.
Thanks for sharing your story.
Mopar151
(9,996 posts)I was never diagnosed - maybe i'm just a nut... but I've used my "obsessions" to advantge, socially and professionally - not that I'm socially apt, but my mechanical obsession in the social circles I frequent finds me friends wherever I go.....
I'm lucky to have friends who put some interesting projects in front of me - I built the engine, fuel and electrical systems in this car - 2011 King of the Hill, won 5 of 6 hillclimbs.
Just because our dreams may be a little different, It's all the more reason to follow them!
Mopar151
(9,996 posts)I got along great with all the gearheads - but the jocks made my life pretty miserable (I went thru 1/2 of freshman year with an eye patch, too - talk about your target!)
The thing is, that following your dreams is not only good for the soul, but encourages social interaction with a wide variety of people - many of whom are equally odd ducks.
hunter
(38,326 posts)The school was too big, too underfunded, and most of all too disorganized to support one. I'd guess powerful jock cultures arise with the strong support of school administrators and the surrounding community.
There was a big stoner culture, and a community of Evangelical Christians, some of whom were bullies.
The few jocks I knew were pretty good at deflecting bullies away from me.
I like your "following dreams" advise. I'm trying to sort out mine at the moment.
Those are wicked cool machines in your videos. My brother is of a similar bent and builds motorcycles. I build computers.
Mopar151
(9,996 posts)Principal had played in the minors, coached baseball. Basketball teams had several state championships. Actually, one of the things that helped was that my guidance counselor was so lazy, that I could write my own schedule, and largely exclude the jocks from jr. and sr. year.
4-H was a big help, too - I could acheive outside the academic setting, with a different group of people, doing projects that I liked.
You'd like our new timing system - based on a laptop, with IR proximity switches as the "beams". The driver of #25 (pro programmer by day) wrote all the code for the PC, which also compiles the times. The traffic light at the bottom is controlled by a IC module intended for hobby robotics, built up and scienced out by a retired hardware designer.
And for your brother - there is a small group of motorcyclists who share the venue with us sometimes (dual sport BMW's, mostly) - and one of them is a wizard video editor - I like this one best:
Odin2005
(53,521 posts)I have a severely autistic aunt and my mom suspects that her dad had Asperger's.
Tikki
(14,559 posts)My 9 year old grandson, was diagnosed at 2 1/2 years old as being on the
spectrum.
My little guy didn't talk real words until he was over 4 years old, he potty trained
weeks before his 5th birthday and seemed lost at the most simple directions.
Now, at going on ten, he has learned to move mountains. This came with much intervention by professionals and
a lot of commitment and follow through on his father's and our part (grandpa and grandma) but we
recognize a real and distinct personality in him and he shares personal interests with family and has his own interests, now.
And I wouldn't trade him for all the tea in China.
Tikki
From The Ashes
(2,630 posts)I just love that little cleft in his chin.
Thanks Tikki for the kind words. Like you, I wouldn't trade my grandson for anything in the world. My life is richer for him being in it.
kimi
(2,441 posts)And it's good that you know now. Like a lot of folks here, I can relate. My 21-year-old son has Asperger's. He's in college, will graduate this year. His future is uncertain, he wants to go to grad school to study history, but has to take the GRE. He's incredibly, I mean amazingly, intelligent - he has a 3.9 GPA or something, and is graduating a year early. Has a photographic memory, is intensely interested in politics, loves Jon Stewart and Stephen Colbert and politics in general - but has absolutely no clue how to socially interact with people. He's been bullied, ridiculed and mocked since he was young, and it's been heartbreaking to watch. Therapy has helped some, but it's still an issue. Part of the problem is that his father, my ex, refused to see a problem till right before he went to college - simply thought our son was being stubborn. My MIL, rest her soul, finally put HER foot down and made noise, and got our son into therapy in the college town where he is now.
Whatever resources are available, take advantage of, and as soon as you can. Every little bit helps. I blame myself, a lot, for not doing more much sooner. Family support means so much, and bless your heart for being involved. Best wishes to you all. Vibes, and BTW, you ARE definitely up to the task!
From The Ashes
(2,630 posts)I'm glad that your son is doing so well. It gives me hope.
I can't not be involved. Ever since he was born, I've felt protective of him; and I'll continue to be, until I take my last breath.
Odin2005
(53,521 posts)What sucks is that I am a warm, sympathetic person who IS interested in people (which is why I'm a Psych major who is into Jung), but my ability to socialize with "neurotypical" people in a normal way sucks, mainly because many of my interests are in obscure areas that goes right over the heads of people of average intelligence, even many other Aspies.
WCGreen
(45,558 posts)I know just a tiny bit about what you face as a family...
I do know that it is extremely difficult to deal with something as daunting as Autism but I also know there is safety in numbers and that together, as a family, you can do great things...
applegrove
(118,778 posts)AngryOldDem
(14,061 posts)For us, it's not been as much as a relief because we still don't have answers, and we still have no firm treatment options. We are about 99.9% convinced our son has Aspberger's. For our daughter, the spectrum diagnosis has been along the lines of, "We don't know what's wrong and we may never knw what's wrong, so here's a catchall to help us all think we're doing something."
I'll make no bones about this. It is not easy. It takes an extraordinary amount of patience -- especially when you think you don't have any more of it left in you. Sometimes it's heartbreaking -- especially when you look at other children who are socially and academically more advanced than your own. Sometimes it's frightening -- you wonder what the upcoming years will bring.
My only advice is take any help that is offered -- fight for your grandchild. Find a school district that has a good history of working with autism spectrum disorder, and fight to keep your child in the mainstream as much as possible. Fight pigeonholing, which is what some schools may try to do. If you're told something that doesn't make sense, or something that you don't understand, ask questions until you do. If you can find a support group, join it. In all our years of dealing with this, we have been on our own because there aren't apparently any groups where we are.
I wish you luck, and please take comfort in knowing that you and your family are not alone.
riderinthestorm
(23,272 posts)I hope the diagnosis can bring you some real techniques for coping and helping now that you know.
There appears to be some real breakthroughs for autism these days although many of them seem so daunting. Sounds like you and yours are going to come out with guns blazing to help your guy. He's lucky to have you in his life!
sakabatou
(42,174 posts)If only I was diagnosed earlier. It would've saved a lot of hassle.