April is Autism Awareness!

Discussion in 'Off The Beaten Track' started by UGG, Apr 5, 2013.

  1. UGG

    UGG Well-Known Member

    Joined:
    Jan 22, 2006
    Messages:
    1,848
    My 2 year son was diagnosed on the autism spectrum 3 months ago.

    I wanted to share my blog entry on autism awareness with you all. I am a newbie to the autism world, but I hope you find it informative :)

    http://myyellowbrickroad0301.blogspot.com/
     
    IceAlisa and (deleted member) like this.
  2. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    Anyone who likes Stella & Dot jewelry should check out this site. The jewelry is very nice and you would be supporting a good cause. http://www.stelladot.com

    Would like to add that the blog is wonderful. It is informative and relaxed. These are the kind of blogs that moms should read, to allay fears and/or to seek help in an informed manner. Where does your son fall on the spectrum? My daughter decided to go into occupational therapy because of working with children on the spectrum (at a DIR Method school). She wants to work specifically with spectrum children.

    I wanted to also put out some information for parents of adult children with Autism. A very good friend, who has been involved with assisted living facilities, has recently opened a residential/non residential facility for adults with Autism. Unfortunately, many adult children with Autism wind up in the system, when their parents can no longer care for them. This facility is the first of it's kind and has gotten a lot of press. Anyone who would like more information can PM me.
     
    Last edited: Apr 6, 2013
  3. IceAlisa

    IceAlisa Épaulement!!!

    Joined:
    Mar 24, 2002
    Messages:
    30,946
    Your blog is wonderful, UGG. I wish you the best of luck and success with your son and his therapies.
     
  4. algonquin

    algonquin Well-Known Member

    Joined:
    Dec 27, 2003
    Messages:
    2,990
    UGG, thanks for sharing. My friends with autistic kids have said repeated that knew in their gut that something was wrong with their babies. It just took a while for things to unfold. What kind of therapies are you doing with your son? I have one friend that had great success with RDI.
     
  5. UGG

    UGG Well-Known Member

    Joined:
    Jan 22, 2006
    Messages:
    1,848
    IceAlisa-thank you so much. Like I said-this is all new to me but I am really trying to educate as well as not be this autism super hero mom-having a child with ASD is scary and people in my family don't get that it is a disability and that my son is truly a special needs child. It is so friggin annoying.

    Algonquin-We are doing developmental therapy, speech therapy through Early Intervention and trying to appeal our insurance company's decision to not fund ABA. Right now my son attends a preschool that has an ABA inclusion program and they are giving us 90 days to work through the insurance issues with an extremely discounted tuition. For us, it is unaffordable without insurance so if we do not get approval for ABA, we will have to take him out of the school. I am devastated. he will not thrive in a regular daycare/preschool setting.
     
  6. IceAlisa

    IceAlisa Épaulement!!!

    Joined:
    Mar 24, 2002
    Messages:
    30,946
    I think that you are making excellent educational and informative points in your blog. I know a developmental psychiatrist who complained that moms would drag their kids to see him only because the kid was lining up their toys. You talk about this, that one symptom, taken on its own and in the absence of problems with social interactions, language, etc. are not indicative of ASD. But the moms still come, the same way they bring in their kids with a viral cold and want the doc to do something about it.

    There are specific diagnostic criteria that you listed and the child has to qualify for several of these to receive a diagnosis. Kudos to you for educating yourself and getting an early diagnosis which meant early intervention. I hope you get to keep him in the preschool where he is now, sounds like a good place for him.
     
  7. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,192
    UGG, your blog is great! :) It definitely educates people on how living with a young autistic child is.

    And may I say, given his obsession with letters, he may make a fantastic typographer one day. :) You sound like you're doing the best for him and I'm sure he will be flourish with a mom like you supporting him!
     
  8. UGG

    UGG Well-Known Member

    Joined:
    Jan 22, 2006
    Messages:
    1,848
    Crusin- when he received his diagnosis, he met all criteria for a dx of "Autistic Disorder" but because of his age and because some of his social behaviors such as his social smile, the neuropsychologist felt more comfortable giving him a diagnosis of PDD-NOS. I was not sure how I felt about this but all of the disorders are going away next month and all children will just have "Autistic Disorder" so I did not persue discussing it with her further. So right now I would say he is considered to have mild autism but it is so hard to tell in a 2 year old. I am sure this year I will get a more clear picture.

    He is non verbal, for the most part. The only word he says is "good" (he says it like "ga") has very minimal gesturing, he is obsessed with anything that spins, and letters. He cannot use a fork or spoon yet, cannot use a straw yet, and his language understanding is really minimal-like I cannot say "does your tummy hurt" and have him shake his head yes or no. Or I cannot say "Ok we are going in the car now" and have him understands what that means. he understands simple phrases like "bring me your cup" or "show me your foot". He spins all of his toys instead of playing with them-this is something we work on in therapy. for example instead of playing with a toy car, he turns it over and spins the wheels.

    he smiles at me all the time, always hugs me, and when I say mama he touches me. He is really good at puzzles and he knows all the letters of the alphabet and all of his shapes :)
     
  9. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    UGG, hopefully, as he gets older, you will have a clearer picture of where he stands. The good news is that you have so many options, today, for academics, treatment, and therapy. Not every child will respond to every method. My daughter was/is very impressed with DIR because of the socialization skills the kids learn. Often kids are taught rote ways of responding in "social situations". However, if the stimulus changes or the situation changes, they don't always understand how to implement the trained response. DIR teaches them to respond in a more abstract, interactive way. He is a very luck little boy, to have a mother who has taken it upon herself to become very educated and calm.
     
  10. maatTheViking

    maatTheViking Now ubering Machida's hair

    Joined:
    Jun 27, 2008
    Messages:
    1,960
    UGG, thanks for sharing your blog. It is very informative.

    I love the letter thing, so cute!

    I was very worried about autism when I was pregnant, but I am less worried now. Not that it isn't a serious diagnosis, and I am sure a challenge to deal with, but I educated myself a little on it and that made it less worrying, as with anything.
    I liked how you said 'inappropriate toy use' that is a great way to think about it.

    good luck with the early intervention, and with your insurance company! Your son has the best chances with the parental support you give him!
     
  11. algonquin

    algonquin Well-Known Member

    Joined:
    Dec 27, 2003
    Messages:
    2,990
    UGG, I am so sorry that you are having trouble with your insurance company. I hope that you win your appeal.

    As for lining up toys, an early development specialist told me that that is often a sign of early math skills. So, some parents that are freaking out, actually have a budding mathematician on their hands. From my understanding, autistic kids play is not functional or imaginative and they fixate.
     
  12. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,192
    This story from ABC News made me :wuzrobbed: and :cheer:

    http://abcnews.go.com/video/playerIndex?id=8281792

    Go Carly! I'm so glad that she can finally "speak" with her parents and tell them what she's thinking. It revealed a truth that no one expected - that Carly's actually quite bright and that she fights with her brain over her body every single day. If her brain would let her, she would talk like any other teen.

    Also, for those who don't have the patience to type, there's now the iPad and enterprising, empathetic folks who make apps that make it easy for nonverbal autistic children to communicate. http://www.cbsnews.com/video/watch/?id=7385686n Just look at the guy's face when he's ordering his own meal and answering questions using the app! :)
     
  13. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    Remarkable! I was aware of the use of iPads with children on the spectrum. But, seeing it in action...
     
  14. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,192
    I know it's almost the end of April...but what are some good online resources, or support groups perhaps, for parents of autistic children? My coworker just told me her son is autistic, and his behavior is putting her at the end of her rope. :( I've met her son, and he seemed pretty normal to me, as much as I can ascertain "normalcy" in an 8-year-old boy (he was hyper and boisterous, but friendly and wanted to show me things on his iPad), but then again I had no idea how he was doing in school, and how he is in everyday life. He's high-functioning, but he can lash out uncontrollably, and lacks the focus to do...pretty much anything. Part of her anxiety is her approach to the whole situation - my coworker is a capital-P Perfectionist, and even though she isn't trying to necessarily shape her son into a "normal" child, it pains her when she can't control something, and she doesn't know how her son is going to turn out. And if she isn't Perfect, she feels like a failure. So she's carrying around this guilt of being a crappy mother because she can't change her son's behavior. It's hard for her to let go of the control.

    She's taking him to a counselor next week, and I think that will help everyone figure out what will be best for him. It's clear a normal school environment isn't doing him any good - he's bright, but he doesn't have the focus to do ANY classwork and often fails tests because he stops in the middle of them. And unfortunately, the real world is not that kind to dropouts who don't have the focus to say, start their own potentially lucrative business...

    It's also really hard, because pretty much she's on her own for this. Her husband would rather put all his kids in baseball, even if means dropping out of school to do it. :p
     
  15. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    One thing I would suggest, if she isn't already doing it, is that she get some help for herself. Being OCD and a perfectionist, myself, I can relate to her feeling out of control. I sincerely hope that she is getting counseling herself, it will make a big difference in her ability to cope and how her son reacts to her. Her feelings of guilt and being a crappy mother, may well transfer to her son feeling like a crappy son.

    Aside from that, finding a good school and getting occupational therapy for the son, is important. Here are some resources: http://autismnow.org / http://www.autismspeaks.org/family-services/resource-library/websites-families / http://www.special-learning.com/parents/home I hope they are helpful.
     
  16. maatTheViking

    maatTheViking Now ubering Machida's hair

    Joined:
    Jun 27, 2008
    Messages:
    1,960
    I just read a bit more on UGG's excellent blog, and she was writing how an online support group has really helped. That will probably help your friend too.
     
  17. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,192
    She's starting to. She's already taking medication for the OCPD, but it's hard. She compares herself to other, "more successful" people and always thinks she's never good enough at anything, but she completely misses the big picture and doesn't acknowledge that the people who are "better" than her also aren't doing EVERYTHING she's trying to do at once! I just want to be able to take some burdens off her shoulders and not have her freak out about it. :(

    Yes, I think a good school and occupational therapy will be the thing to do. Aside from the periodic lashing out, he didn't seem all that different to me, and I chalked the lashing out to being well, an 8-year-old boy. :p But finding out he's autistic has answered some of that. But he plays with other kids, relates to people, so it's just hitting the areas that he's deficient in. It will be manageable. I think that's what she needs to hear. Thanks for the links.

    She's still doing this on a grad student salary, so finding the money is hard too. :( Alf met her husband at the wedding, and doesn't think he's a terrible guy - I don't know him that well, so I don't think it's fair for me to accuse him of being two-faced. I know I've only heard her side of the story and definitely there's his side that needs to be considered, but if she feels so much pressure and tiptoes around him so much, the communication wires are crossed badly SOMEwhere. Again, another ball to juggle for her. :(

    Yes, I'm considering sending her UGG's blog too, who's approaching this with a sound head and a plan. However, I'm also thinking that the three therapists UGG has for her son will make her feel even more terrible that she can barely afford one, once a month. :eek:
     
  18. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    Anita, I am sending you a PM re: this topic. I would rather not say this here.
     
  19. dardar1126

    dardar1126 Well-Known Member

    Joined:
    Apr 1, 2013
    Messages:
    3,299
    Twitter:

    EDIT: Fixed the link.
     
    Last edited: May 1, 2013
  20. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    Anita, I wrote you a long message, but your message box is full :(. Let me know when you clear some space and i'll rewrite it.
     
  21. AxelAnnie

    AxelAnnie Well-Known Member

    Joined:
    Oct 23, 2002
    Messages:
    6,015
    UGG - thank you for sharing something so very personal. I can't even imagine what it is like to have your precious two year old given a diagnosis of anything....... Totally devastating, of that I am sure.

    It sounds like you are doing all the right things....early intervention, therapy. It is going to be a difficult road, with hard fought and hard won battles and heart wrenching defeats. This is your new normal, and shame on people for not understanding....especially family members. There is so much pressure on parents to have a "perfect" child, and a perfect life. And, you actually do have perfection.............your son is Perfectly Mason.

    Good luck. And your friends here (me included) will be sending you our best thoughts.
     
  22. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,192
    Oh no! Do you have to rewrite the whole thing? :( Sorry for all the trouble - my Season Pass ended and I didn't get an alert that I was over my inbox limit as a result. On another forum I'm on, I actually get an alert on top of the page if my PM box is close to full. :shuffle:

    Thanks so much for caring. :)
     
  23. cruisin

    cruisin Well-Known Member

    Joined:
    Jan 9, 2005
    Messages:
    17,561
    Not a problem, I'll try again.
     
  24. agalisgv

    agalisgv Well-Known Member

    Joined:
    Jan 29, 2005
    Messages:
    24,018
    For those in the know, just how prevalent is ASD for older parents? Someone I know quipped that autism was really an issue with older parents. I know there is a correlation there, but didn't know how strong a correlation it was (though offhand I can't think of any parents under 30 who have ADS kids).
     
  25. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,192
    My aforementioned coworker gave birth to her autistic son at age 23. So it definitely does happen. But yeah, I think being older is a "risk." Obviously, that doesn't mean that if you're a young parent, you're automatically in the clear. :p