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Unlike a lot of parents (or so I've read), I greeted Lily's autism diagnosis with a celebration of sorts.  Prior to her diagnosis we were flat clueless about what was troubling our little spud.  She was a fussy eater.  She wasn't walking.  She only babbled, didn't actually speak.  She had no interest in conventional toys. . . blocks, balls, nuthin'.  She would sit on the carpet and endlessly rub her feet against it until the sides of them were blistered.  We (my wife and I) had adopted a no stone unturned attitude, visiting geneticists, neurologists, and finally psychologists because our pediatrician was telling us. . . "some kids just develop slower than others" and we just didn't think that was good enough.  When she was diagnosed, there was some uncertainty put to rest (oh sure, and some more uncertainty added), some closure to the issue of "what is up with Lily"?

That seems glib and not completely accurate.  I've read a lot about the 'grieving' or the might have beens that parents go through when they get the diagnosis.  I'm not saying we didn't go through any of that.  We soooooo totally did.  We just sort of did it before we had an actual diagnosis to point to.  To read the above and say "WOOHOO, Autism!!" doesn't accurately summarize it.  Perhaps, "Boohoo, something is up with Lily and we can't figure out what it is!!!  WOOHOO it's not ten things that we considered that are sooo much worse than Autism!!!!" might MORE accurately summarize it.

Also unlike a lot of parents (or so I've read), the moment we received Lily's diagnosis, help immediately kicked in, in the form of a case worker, early intervention, IEP meetings, etc.  Pennsylvania, from what I can gather, is a fantastic State to have an autistic child in.  I mean, I'm not saying plan for it, or anything.  I'm just saying, the sheer amount of "free" help Lily receives is unreal, and sometimes I wait for the other shoe to drop. . . Medical assistance means free medication, insurance means free TSS and BSC support, IEP process means Lily gets what she needs in mainstream schools here regardless of what they currently have in place.  If I didn't already live here, I might consider it in my best interest to move just to get her all the help she can get.

In short, knowing that Lily is on the spectrum means she gets the help she needs, and allows us to tailor our approach with her.  And it's been a remarkable bonus that we happen to live in a State as supportive as this one. 

Obviously Lily's autism comes with all the heartbreaking issues that you might expect, not feeling welcome in places where Lily is "too loud" for others, not feeling comfortable in others' homes because their belongings aren't Lily proof, worries about bullying, worries about the future.

But Lily is happy, and Lily is loved, and our goal as Lily's parents, just like every parent's goal for his child, is to help her be the best she can be. . . whatever form that might take.

24 comments:

  1. Can you please tell me a little more about Lily's diagnosis? what end of the spectrum was/is she at? and how is she doing now? My 3 year old daughter has been diagnosed with mild/moderate autism just a few months ago and she is currently on medication and speech therapy, she had a vocab of about 15 words prior to this which i know is very less for her age but now she has lost everything.

    We were also glad to finally put rest the worries and wrong diagnosis she was getting when we were first concerned that something wasnt right. she is our only daughter and we hope like every other parent she gets better and leads a normal life.

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  2. I still don't really understand the spectrum the way I probably should. I would say that Lily is moderately affected. I don't believe (although my wife might disagree) that she had a "regression" per se, just a verrrrry slow development. She has a diagnosis of PDD NOS with ADHD.

    I wrote a little about it as a guest blogger here: http://www.livinglifewithasideofautism.com/2011/10/guest-post-ready-for-not.html

    I don't really know how to post links in comments.

    If you have specific questions I'd be happy to answer them. I'd have to go back and look through past journal postings to compare, but 15 - 20 words probably summed up Lily at 3. We think she's probably approaching a thousand words now (almost 6).

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  3. Hi Jim, thanks for the reply. I have actually read the link you have posted, that's how i got to your blog! My daughter did not crawl either and just walked around the 14 - 16 month mark, I didn't realise this has anything to do with autism as my wife never crawled as a baby so we often thought she got it from mum.

    My daughter never really showed any of the common signs of autism either hence why we never paid much attention. When we put her in day care for the first time just before her 3rd b'day she had a huge meltdown the same night and it was downhill from there onwards, that's when she lost her speech, the lack of eye contact and social interaction decreased. We have gone through 100's of hours of video since her birth and found no obvious signs. Yes, she did miss a few milestones where speech is concerned but, again my wife's old sister spoke only when was 4 and we thought once again she got this from the wife's side. none of my wife's family has a history of autism or anything similar or it did not occur to us that she had problem.

    Was Lily always verbal or did she loose her speech and then get it back? Also what therapy and medication is she on? when was she fully toilet trained? ( my daughter does not go to the toilet herself but drags her mum towards the toilet when she needs to go, she does not wet the bed either, which i was told was good at this age esp for kids with autism ) Also is Lily on any specific diet? Does Lily have a good memory? ( my daughter has an amazing memory, she remember anything if she is shown it once )

    Apologies for this rather long post.

    Also

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  4. Well, I don't really think she regressed. She just sort of plateau'ed. She didn't really say actual words until close to two. About 18 months. And then only a couple words here and there. She was VERY verbal, without actually saying anything. She would just babble and gesticulate endlessly with no intelligible words.

    She didn't always make eye contact, but she also developed strabismus (one eye would wander) and we supposed that it was very difficult for her to be verbally attentive to anything or anybody for very long because of that. She's since had corrective surgery, and she DOES maintain some amount of eye contact, and that's just one of the areas where she doesn't seem to "fit".

    As far as toileting goes, Lily does not drag anyone or go by herself. If left to her own devices she'll just soil herself and run when you bust her about it.

    Her memory does seem pretty good, although with her spotty communication it's difficult to ascertain. She remembers words to songs that she hasn't heard in ages, and books that we've read, and the other day, she pulled a birthday card of mine off the counter, and looked at it and said, "we having a birthday party". On the front of the card it had a bunch of animals in party hats and it said "So you're having another birthday party" or something to that effect. Did she remember? Did she. . . (dare i hope) read it? or did she just recognize the animals in party hats as being at a birthday party.

    Lily MAY be on a specific diet in the next few months. We took her to a local "autism pediatrician" to guide her treatment, and he's got a reputation as being someone who examines blood testing and puts autistic kids on special diets. But she's not currently on one. She's a very picky and stubborn eater, and very undersized.

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  5. Jim, thank you very much for providing me with the info. Please do keep us posted if Lily does start any specific diet. My daughter has no dairy products, sugar or any wheat products and we noticed a huge change in her behavior.

    I thank you for taking the time to answer my questions and also all the info you have provided on your blog, certainly inspired me to get one start as well.

    I wish you and your family the very best. god bless.

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  6. My pleasure. Stop back and link me to it if you get one started and I'll "follow".

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  7. Just discovered your blog today - stopped by from Yeah. Good Times. So happy I did!

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  8. hi Jim, I have finally started my blog http://autismdad2011.blogspot.com/ cheers once again for replying to my earlier posts...

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  9. @autism dad - I tried checking it out while I was on vacation, and it proved painful to fight off car sickness and navigate the various logins via my iphone. I'll check it out today!

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  10. With us, when we had Minion3 diagnosed, it was actually the school who stepped in and helped us all the way. She was new at a school that had previously been where all the special needs kids went in the district (or, rather, the more extreme cases). The teachers were familiar with and capable of having kids mainstreamed that might not otherwise be.

    At the start of the year, her 2nd grade teacher said that several of the school ASD therapists kept wanting to pull her aside when they watched her, only to be told she wasn't listed with the kids who got services.

    The school paid for all the testing needed, and she gets a lot of help now. We always had that feeling of "Something is just off with her", but kept hearing "She's fine... maybe a little hyper, but fine!"

    Even now, our old family doctor still says he doesn't see it in her (he's still MY doctor, as I've had him since he started practicing when I was a child).

    M3 also walked late (she took her first steps when she was 16 months), was very loud and verbal without talking from the time she was a baby (even now, she holds complete conversations with herself all the time), and had a lot of weird tendancies, on top of the just over all weird behavior.

    For me, honestly- I was YAY Autism when we were first sat down and said, "We want to test her for this." My reason, though, was that if there was an answer for her, I wanted it.

    Now, granted, she's high functioning, and still to most people just comes across as very hyper, so we don't have to deal with some of the more difficult aspects other parents deal with.

    But, she's getting help, and when people give us that look that says, "Your child is fucked up", I can say, "Our daughter has Asperger's Syndrome, she can be a little difficult to manage."

    She's doing girl scouts now- something I never would have considered before her diagnosis. I never trusted leaving her with strangers who would think she's just a bad child. But, the scout leader she wound up with is awesome- and raising an autistic son herself, she's very familiar with the spectrum, and knows when to leave M3 alone, and when to engage her in what is going on.

    M3 LOVES being in it, and it has helped her gain friendships- something she lacked before.

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  11. Sounds like a great job out of your school for spotting it and pursuing it.

    Sometimes I feel like we're really lucky to live where we live. I read a blog by a guy in Canada. . . they do NOTHING for the kids there. It's criminal. Sometimes I just want to leave a comment. . . "why stay? why not move here?" but I don't doubt there's something. Otherwise I'm sure he would.

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  12. My son M. has the same diagnosis. What I've learned through my studies is that PDD-NOS really stands for "somewhere-on-the-spectrum-but-we-have-no-fucking-clue-where". I was blessed to have M. diagnosed early and after going through three school districts we are finally in one that is showering him with services and really fostering his growth as a student and all-around kickass kid! I'm so glad I found your blog; can't wait to hear more about your short people! :)

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  13. This is extremely informative. It is great that you guys can have this type of forum to share your respective knowledge on this subject. I wish you all the best of luck.

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  14. I had just gotten off the Famous Footwear web site, giving profuse praises to a sales associate for her assistance with my 10 year old daughters and my shopping experience there, when I read your blog about Target. Although not diagnosed her physcologist has mentioned on several occasions the possibilty of autism and the need for testing in the near future. You stated in your blog that due to your awareness, you notice things. I notice the kindness, mostly just unintentional, but none the less kindness that helps to make my daughters world a better and easier place to live.

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    1. I have too many negative stories not to share the positive ones too.

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  15. Hi Jim, I'm not a blogger or a blog reader but I saw your blog on the AOL page and have some information to share. If you haven't already considered it, take Lily's shoes to a shoemaker and they can add a plastic piece to the toe that will make the shoes last twice as long. It has worked for lots of "foot draggers" I know whether they do it for sensory or spasticity reasons. I've been taking care of kids for a long time and just saw someone who had done this last year. It seemed brilliant. Hope it works for you! Have a great day!

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  16. Hey Jim. This is the first, though I am sure not the last, to have come across your blog. My son, who is now 6, was dx with PDD/NOS, ADHD, ODD and mood disorder all by the age of 3. I have endured many ups and many upon many downs. My husband has been encouraging me to start a blog to "help myself" and meet others who "walk in my shoes". Thanks for opening a part of your life to others.

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  17. Just found your blog, and yes I am tempted to move to Pennsylvania. Not sure my parents would forgive me for leaving the country though (we're in the UK!)...

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  18. Hello -
    We are a small game and toy company (non-electronic games) that launched 3 games in 2012 and 2 more in 2013. We had been getting comments from parents of children on the autism spectrum how the first 3 card games were being enjoyed in their homes and even at their therapy and school sessions. So this summer we began working with an adaptive specialist who put together a team of parents, therapists and special ed teachers to help up develop adaptive play suggestions for our games Spectrix, Array and CUBU. We would love to offer you a set to review and we would also be happy to provide a second set for a giveaway. Our info is here: http://funnybonetoys.com/adaptive-play/

    Please let me know if you would like a set. We also just donated 50 sets to the Colorado Autism Society for their two big annual events. It is our biggest joy as a company to have products that can be enjoyed by all children.

    Most sincerely,

    Julien Sharp
    Funnybone Toys
    855-386-2663
    Funnybonetoys.com
    Facebook.com/funnybonetoys
    YouTube.com/funnybonetoys

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  19. Hi Jim, I'm only going to tell you this because I noticed it and it would bug me if it were my writing....in the second paragraph, you spelled ”austism”. Just fyi. Feel free to delete this or tell me to shove it. ;-)

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    1. Fixed! Now...only 10,000 more pages for you to spell check...get crackin!

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  20. I'm new to your blog and haven't read much yet but, Wow! I'm stunned by the resemblance to my own girl, age 7, diagnosed at age 3. https://instagram.com/p/2lhXMdQIFZ/

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