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Special Needs
sweetie0228
member
S/O of one of Torrey111's posts
sweetie0228
member
honestly, if it weren't for this board, how in the heck would I know to do so? That is what is so screwy and makes me so mad! Why doesn't my health care provider tell me this? How is someone who is just starting to get into this whole world supposed to know how to navigate it??? What if the parent doesn't know anyone IRL who has experience here in the land of dev. issues, dx, and everything else?
I feel the same way.
My DS was only Dx w/ ADHD and on meds since 3rd grade. This past November He was Dx w/ Asperger's. He's in 6th grade now. In the IEP meeting, after going over all the findings the Social Skills teacher asked how did we miss this kid? He so perfectly fit the Dx that someone should have said let's get him checked out for being on the spectrum.
Yet I did. Twice. But w/ my Family Prac. not even a ped. And I'm ANGRY that my doctor didn't say this is out of his realm and doesn't have the experience to diagnose this accurately. I'm Angry and fortunate that the first type of ADHD meds do work for his co morbid of ADHD. But the meds were the only thing offered to me.
I didn't realize the following red flags until this board (in no particular order):
My son could read by 2 years old and that's a red flag called Hyperlexia.
My son could do math in his head as a toddler and can quickly sum long lists of numbers.
That the "chin hugs" we get aren't abnormal in ASD world.
When my son repeats words or phrases (since toddler) and memorizes and repeats back whole movies (shrek) it's called Echolechia.
That my son doesn't actually play with toys, he mainipulates them, he'll line them up in long lines across the room but has never picked up a banana and pretended it was a phone and talked into it.
He obsesses about his special interests and in almost the same order every other ASD kid does Horses, Trains (thomas especially), Dinosaurs, "cryptics" (the yeti, the jersey devil, Big foot and the lochness monster, etc), Pokemon.
My son didn't actually have a speech delay in the traditional sense. He made up his own language and only spoke to me and his sister. I had him tested for EI at the CCIU and didn't you know he realized he was being tested and talked in whole complete sentences in ENGLISH. Practically in the British accent he had heard SO MANY TIMES on the Thomas the Tank Engine series. He finally got speech help at the University with grad students in the communication disorder dept. Where they interviewed him for much longer than the IU and was in Speech therapy for 1 hour 4 days a week for 2 years.
He confused (or didn't care) pronouns he/she
He couldn't ride a bike until he was 8-9
He had "terrible" handwritting. Actually, he likes to fill the whole space with perfectly formed letters. I figured that out in kindergarten yet none of his teachers believed me even when I showed them he can only write clearly on college ruled paper and they HAD to stop using the nursery paper w/ the dotted lines. And will only use one side of the paper. I even offered to provide all College ruled paper for him...no dice in elementary.
I taught my son basic facial expressions flash card style w/ my face, (I didn't realize other parents didn't typically do this)
He prefers to eat with his hands no matter what we are eating and will only use his utensils consistenly when earning time for his special interest time or DS/computer time.
I thought my son's large extensive vocabulary was because I refused to talk in baby talk and that he was smarter then other children.
That my son doesn't smile in photos (unless he doesn't know you are taking them)
He doesn't realize he's a child and never has.
My son's face is nearly perfectly symetrical and he has a cowlick whirl on front that goes in the opposite direction than the whirl in the back of his head.
I was more babyproofed than other parents b/c my son liked to crawl/climb to the highest point of the room and jump. He had since told me it's because he believes he can fly but knows he's not supposed to try anymore. ( I know that sounds crazy)
I didn't realize that he had always used my hands to point or do things like my hands are tools/utensils and still does.
My son was my normal and his only friends are also on the spectrum I've since found out. And it was a really bad shock last year when I chaparoned a field trip and he stuck out to me.
I've also since realized my H also has Asperger's.
The photo below in my siggy...That's my son on the right and that's how he normally runs. Arms straight down and to the back. I've never seen him run pumping his fists.
Thanks for reading you deserve many cookies for my blathering guilt of not knowing what to look for or recoginzing what I was seeing.
But he's getting help now and really enjoys his social skills class. He feels better about himself that he's not bad, he's different. And I'm happy that while he'll still have to work for his grades he won't struggle anymore.
And Auntie thank you. I'm also in PA about an hour or so away from New Hope. Do you know of any sibshops or group that my older DD can go to that will have other NT teens with siblings on the spectrum? She's logically understands there are just somethings her brother can't do that same way but emotionally she's not as accepting. I was hoping to find someplace where she can talk to other siblings in her boat. So she can vent/find support/stategies and validation. I've reached out to her school guidance counselor and the person at Devereax hasn't gotten back to me and neither has the person at CCASD Support.
This discussion has been closed.
Re: S/O of one of Torrey111's posts
I feel your pain. I've basically been telling Dr's that something was going on with DS since he was about 12-18 months (he was the most intense baby I've ever seen) and had them all blow me off as an obsessive first time mom. Or a crazy American when we lived overseas. Take your pick. I'm so grateful the first dr. I went to here heard me when I told her I thought we needed a referral. I think a lot of us aren't sure what is going on and Dr's take that uncertainty to mean we are looking for reassurance which only makes us feel more insane. It is the one part of the whole process that still makes me angry.
I also related to a lot of these and have figured out that my BIL probably has AS as well. Actually my my MIL and DH have some really pretty quirky inflexibility and sensory things as well, but nothing that I would say is full blown on the spectrum.
I'm glad you are gradually getting some answers even if its a hard road.
Thank you so much for sharing your story and giving such "real world" examples. Too many people ASD is just spinning in circles, flapping their hands and refusing to look you in the eye.
I so strongly agree with you on the value of this board. I started out as lurker when my 1st was just a baby. I knew ASD was on the rise and boys were more effected than girls. I figured that even if we didn't receive such a diagnosis that I would most certainly have friends that did and /or my boys will have their own friends that do and I wanted to be educated. We did end up with a severe speech delay and SID and this board has been such a wonderful place to bounce ideas and issues off of others, to vent, to worry, to have feelings and fears validated. I appreciate each and everyone of you ladies and the stories you share so very much, you've all made me a better mother and better friend. I thank you.
oh, man, I have been so busy yesterday and looks like today as well. I cannot wait unitll I get the kids to bed tonight so I can read/respond to this- I skimmed the first paragraph, but will read it in it's entirety later tonight.
Man, great post- and great follow-ups too ladies.
To the OP, I am mad as hell that my pediatrician has failed us. I think it's his fault, and the institution's fault as well. What the hell is going on here? What sort of "care" is this? I remember a few years back telling him about some things going on with my son. He did reccomend I read "The Spirited Child"- it was the first time I had heard of it and as a first time parent oblivious to this world I am in now, I just interpreted the word "spirited" as "unique". Sigh. If I had only known....
First I want to say to you and to everyone else, including myself, that we, as moms, cannot beat ourselves up about the things we saw but that didn't register. Why would they? - especially being first time moms with no experience in this area. Being head-over-heals in love with your child makes you think everything they do is great. Even if you weren't a first timer, if you don't have any real experience with this stuff, why would you know it was a red flag???
Which is why I am increasingly more POd about my pediatrician not seeing this issue- and, subsequently, having a super detached way of dealing with it. WTH!?
Your post, though, I can guarantee is helping so many people who maybe are seeing things in their own kids, and you know what?... if it takes a freakin' internet board to become educated or in the know or aware or whatever you want to call it, SO BE IT. It sure has been a lot more insightful and practical and useful to me than my overpriced, unhelpful "health care" provider has been.
Thanks for sharing your experience and best to your family!