Search Results for "autism | autistic"

  1. Special Needs Mil is always telling ds that I will give him my phone to occupy him when he is acting out in public. He has autism and is non verbal. 4-21-2019 1:18pm (28 replies)
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    • is what she's saying untrue? 4-21-2019 1:19pm
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      • She is deciding that I need to give him my phone. 4-21-2019 1:20pm
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        • Sounds like she is getting it to him before you do 4-21-2019 1:21pm
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          • I have the phone so that is t possible. 4-21-2019 1:23pm
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        • sounds like you two need to discuss a plan ahead of time. Giving a phone as a self regulating strategy can be helpful, but perhaps you follow a different protocol and she needs to...(more) 4-21-2019 1:23pm
          know it
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          • Dh won’t talk the her and I won’t because she isn’t my mother and will think I hate her. 4-21-2019 1:24pm
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            • sounds like a whole history of conflict here and this is the least of it 4-21-2019 1:25pm
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              • It’s a whole history of conflict and this is a big part of it. 4-21-2019 1:26pm
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                • By not communicating how you handle ds, you are setting MIL up to make the wrong suggestions 4-21-2019 1:27pm
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                  • She has been told not to handle it. 4-21-2019 1:28pm
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    • That sounds like a good solution 4-21-2019 1:20pm
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      • It isn’t. 4-21-2019 1:21pm
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        • What is a better one? 4-21-2019 1:21pm
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          • We work with him on his frustration tolerance. We need to teach him how to behave and not give into him. 4-21-2019 1:22pm
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            • OK, and how do you do that? MIL needs to know too. It's stressful when acting out happens. 4-21-2019 1:26pm
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              • Giving him reinforce the for good behavior and not attention for bad behavior. She has been told over and over that he is on a program and to let us handle it. 4-21-2019 1:27pm
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                • good information to include in the OP- we were confused 4-21-2019 1:32pm
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        • Np if she gives it to him as a result of him acting out, then he’ll keep acting out. It’s got to be given at times when it won’t be reinforcing unwanted behaviors 4-21-2019 1:22pm
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          • This 4-21-2019 1:22pm
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          • I dont find that autistic kids think this way- they arent trained dogs. They often act out because they are overstimulated or confused. 4-21-2019 1:24pm
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            • Op this is how you teach a kid. 4-21-2019 1:25pm
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              • excuse me? 4-21-2019 1:25pm
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                • This is how you teach a kid with autism. We also use verbal behavior but Aba is also important. 4-21-2019 1:28pm
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                  • There are many ways to teach kids with autism. In fact, ABA would not have one way (reward/ignore) of addressing this particular behavior. I hope the protocol you are using...(more) 4-21-2019 1:31pm
                    works for ds and MIL gets out of your hair.
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            • do you have an ASD child? They are humans, and indeed the respond to reward systems. 4-21-2019 4:33pm
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              • I specialize in working with autism children and adults. I have extensive training and consult with many home based programs. 4-21-2019 8:14pm
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    • I will come yell at her on your behalf. Sorry you have to deal with this. Hugs! 4-21-2019 11:50pm
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  2. Special Needs Toddler My dd needs assistance any time he uses the bathroom. This alone makes me life so hard. He has autism. 4-20-2019 5:34pm (10 replies)
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    • How old is dd? 4-20-2019 5:36pm
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      • Ds not dd. He is 13. 4-20-2019 5:37pm
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        • What part does he need assistance with? Do you have OT/ABA support to work with him on toileting? 4-20-2019 5:38pm
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          • Wiping or just to wipe of the seat. He has all of that. 4-20-2019 5:39pm
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            • But have they been working on it? I'd throw a lot behind that b/c it's a quality of life issue for you. Signed mom of ASD ds who took a long time to learn toileting skills. It was...(more) 4-20-2019 5:40pm
              icky but we got OT support. Tons of practice.
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              • Yes they are working on it. 4-20-2019 5:41pm
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                • You'll get there. It will just be a distant bad memory at some point :) 4-20-2019 5:45pm
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    • People were being nice on toddler 4-20-2019 5:36pm
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    • Can you brainstorm any little thing DS could do that would make it one iota easier...(more) 4-21-2019 11:58pm
      For you? Bringing you a picture of a flower to indicate the need to go, ripping off some toilet paper to give you, waiting with you while you check toilet to see if seat needs wiping, helping put seat down afterward? It is so hard for them to focus and be present if it isn't a preferred task, I know. Sending hugs and strength and patience!!!
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  3. Special Needs Speaking of autism...what do you think about the movement that seems to be happening celebrating autism, and not seeing it as a bad thing? My older ds has autism, and it is...(more) 4-19-2019 12:44pm (28 replies)
    defini8tely NOT a good thing. I would give anything to have him not have it.
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    • i think parents want what is best for their kids. which should include in large part celebrating as much as possible, including whenever possible, advocating for our kids,...(more) 4-19-2019 12:47pm
      teaching them skills in a way that builds confidence.
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      • True, but this doesn't require celebrating autism, imo. Autism sucks, at least for my ds. 4-19-2019 12:47pm
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        • you play the hand you are dealt. and yes while things are difficult, children still want to feel nurtured and important. 4-19-2019 12:48pm
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          • np - of course you do. but if ds was bipolar i wouldn't be celebrating that either. i'd celebrate things specific to my child's accomplishments -- learning to ride a bike, playing...(more) 4-19-2019 12:49pm
            piano, being good at math....
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            • i dont know if autism and bipolar are directly comparable for a lot of reasons. 4-19-2019 12:51pm
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              • they are both diabilities i would not choose for my child, but would deal with if they came -- no different than if he had CP, intellectual disability, cancer, etc. 4-19-2019 12:53pm
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    • I like it. What else can we do. We ha e to live with it. 4-19-2019 12:48pm
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      • But it's kind of like celebrating deafness, or blindness. No, those are NOT good things! Yes, we help the person with them all that we can, but they are disabilities. 4-19-2019 12:49pm
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        • We are celebrating uniqueness. 4-19-2019 1:06pm
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        • actually to the people who are deaf or blind they may not see it as a bad thing but a part of them 4-19-2019 5:05pm
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        • I disagree. Many in the deaf community are anti-cochlear implants because they celebrate their deafness. When discussing a potental cure for my daughter's visual impairment she...(more) 4-20-2019 7:33am
          said she hoped no one wanted to "cure" her since there is nothing wrong with her.
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    • I'm with you. I'm not celebrating something that has made life harder for ds, his sister and the rest of our family. 4-19-2019 12:48pm
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      • THIS. Maybe if your kid has high functioning autism like Bill Gates - where they do great in school, but have slight social problems - it's not such a big deal. But my kid is...(more) 4-19-2019 12:50pm
        supper aggressive and violent at times.
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        • Bill Gates is not autistic. I have a kid who would be considered low functioning although that term means little who I celebrate. i think the movement especially its involvement...(more) 4-19-2019 5:11pm
          with autistic adults is great
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    • I think the celebration of “differences” across all parts of civilization has swung to some ridiculous extremes. But it’s still a minority who thinks that imo. There are things...(more) 4-19-2019 12:53pm
      that are detrimental to have and praising them as some kind of achievement is patronizing. I’m thinking of Deaf culture extremists, etc. And fat acceptance - obesity isnt a moral failing but it’s also not a wonderful thing for anyone to have, especially young people. It’s a tightrope kind of thing too. Acceptance doesnt mean something is great. That’s my 2¢.
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      • I agree. Acceptance, yes, but not celebration. 4-19-2019 12:54pm
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    • good question. my niece has autism. i wouldn't say my sister "celebrates" it but she recognizes and is proud of her unique strengths (i.e., her unique view...(more) 4-19-2019 12:54pm
      of the world).
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    • People are just trying to cope. 4-19-2019 1:04pm
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    • Autistics (and others like parents) who are a part of the movement or support it are not saying everything is perfect or that they don't need support. They just do not want to be...(more) 4-19-2019 5:08pm
      seen as tragedies or be told what they are must be removed
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      • IMO, it is a tragedy. 4-19-2019 5:30pm
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        • This post has been deleted. 4-19-2019 5:38pm
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          • People who have been marginalized and stigmatized often have developed a “pride” movement...(more) 4-20-2019 8:31am
            This is no different from LGBTQ pride, Black pride, etc. It is a part of the disability rights movement. People are accepting themselves as different and highlighting the positive aspects of something which others define as a negative. Those of us on this board who are neurotypical have absolutely no right to comment on it.
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            • I recommend following The Thinking Person’s Guide to Autism and #actuallyautistic 4-20-2019 8:59am
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              • I tried #actually autistic, and hated it. I know it's different for everyone, but in my world (with my ds) it is absolutely horrible (for him and for us) and is NOTHING to...(more) 4-22-2019 3:30pm
                celebrate.
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            • It's very different -- being black or a lesbian isn't a disability. 4-20-2019 10:57am
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    • in my early years in this world I thought it was a tragedy that my dc has asd. Back then I was very firmly in the Light It Up Blue world. But, as the years have gone by, I've been...(more) 4-21-2019 10:46am
      able to see more and more that is amazing in my dc and some of that is entirely due to autism. Sure, asd sucks. Big f'ing time. We've been through some serious crap as a family thanks to asd. But, my dc is a person who will eventually be an adult with all sorts of characteristics, not all of which are mainstream acceptable. As I've come to accept this, I've switched to the RedInstead world of autism acceptance, not awareness, as we need our asd kids to be accepted not viewed as waiting for cures. That said, if I could wave a magic wand and make my dc totally nt, hell yes.
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  4. Special Needs Sleep apnea test for autistic kid?...(more) 4-9-2019 9:01pm (4 replies)
    My DD is 9 and has ASD, ADHD, sensory problems and anxiety. Her behavior has gotten worse lately and I just noticed that she snores. I’m wondering if she might have sleep apnea. Can anyone recommend a doctor or a sleep study place that can handle testing a kid like this? Do they have at home tests you can do?
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    • In NYC by the way 4-9-2019 9:08pm
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    • Ask her ped. Yes you can do it at home. 4-10-2019 12:20am
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    • See an ENT. A full sleep study might not be necessary. She might have enlarged adenoids and or tonsils which obstructs her breathing. In NYC see...(more) 4-10-2019 8:49am
      Joseph Bernstein - he is fantastic. Also the team at Cornell are good. Avoid Michael Rothschild he is terrible.
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    • We did this at Columbia. I think the Dr was Karen/Caren Lamm - something like this 4-11-2019 10:02pm
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  5. Special Needs Would someone be willing to explain ADHD to me? This is informational only, I have no opinions, no theories just genuinely curious. I read posts about how a child will terrorize...(more) 4-7-2019 10:40pm (17 replies)
    an entire family - literally terrorize them - over doing homework or laundry. It seems like the most overwhelming debilitating thing to happen to a family I am curious as to whether people know what causes it, is it a spectrum thing like autism so it can be mild or severe. Is there much progress with medication and/or therapy? Also please don't get upset when I ask this I am just asking: is this considered a mental illness or a neurological dysfunction
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    • Thanks for posting here. I have two dc with adhd. My older has extreme hyperactivity and impulsivity and the younger has more combined type. I'm very fortunate in that my dh...(more) 4-7-2019 10:46pm
      understood that medication was necessary and didn't push back on it at all, like many dhs do. Medication was a game changer for both kids.
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      • Thank you for responding. First, I am glad that they have responded and you have found a solution. I have read so many terribly sad posts from parents who have tried everything...(more) 4-7-2019 10:49pm
        and need to resort - in extreme cases I am guessing - to schooling them outside of the home. Is there a genetic link to this or do they not know? I am ask about the genetic link because I was/am someone who I think exhibits a lot of these qualities. Certainly as a DC I was what people would call 'out of control, til, erratic' I did terrorize the family over small things, would be physically destructive, tried to hit people, lashed out in many ways. As an adult I made concerted efforts to change but its still there.
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    • its so hard to explain because it's not like other things that are one way and then you treat it. every kid is different and presents differently. family dynamics affect it I...(more) 4-7-2019 10:56pm
      think. I see kids manage better when they have a bigger supportive family and the resources to throw therapy and anything else that might help. Not that it makes it go away it doesn't but I see single parents or one parent who doesn't believe in it or support meds make things harder. My ds has inattentive type never hyper. He cant focus on something that isnt insteresting for more than a minute or two...he says it feels like his brain is floating around and he cant make it stop and listen. He has anxiety which manifests into very emotional behaviour. he is defiant about almost everything. he pushes boundaries constantly. has to have his way. he doesn't seem to have any desire to do well..but when he does he's so happy :) getting help in school is like fighting a war every day. honestly its a hell I wouldn't wish on anyone. Meds have made him so psychotic he's been rushed to the ER several timess. police have come to our home several times when he has episo
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      • Oh my god, the medication made him psychotic that is horrible I am so sorry! Ok so I see right off the bat that there are many many forms of this and that it isn't one size fits...(more) 4-7-2019 11:01pm
        all. Must be terrifying and in some ways alienating. As someone really in the dark about ADHD I can imagine making a snap judgment about a DC I saw behave that way without really knowing what is happening. I have to say, and this i not pitting one disorder against the other, but I don't see as much about ADHD as I do about autism which is puzzling considering how much more detrimental it appears to be.
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        • yes its so isolating..people think horrible things about your kid...but then don't see the great sides too. an average person wouldn't think anything of my dc if he wasn't at...(more) 4-7-2019 11:04pm
          school...just hanging out with friends or being active or going to a movie or anything. he's a nice polite kid and outside of home can and does hold it togheter. so theres a lot of letting all that emotion and frustration from the day out at home.
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          • I can see that. In a way I feel as if you are "lucky" that outside of the home he isn' meeting much judgement because his behavior is good but then feel you are not lucky to get...(more) 4-7-2019 11:06pm
            the brunt of it at home. Thank you so much for taking the time. I think I undesrtand more now. I think there should e more national attention to it.
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            • yes and the autism thing is interesting...I have wondered over the years if dc is misdiagnosed and is more ASD than just add and anxiety...they can be misdiagnosed...and IF he was...(more) 4-7-2019 11:12pm
              diagnosed as on the spectrum/high funtioning he would haved so much more supports in school and the community. I know a couple kids who are high functioning autistic but do so much better in school than my dc in part because they get so much help and supports and the school system takes it seriously whereas teachers get little to no training in adhd, I think many of them still think it isnt real. those kids seem to have much more social issues though and my dc stil has lots of friends and seems like a typical teen on the outside. my friends get so many therapies covered because of the diagnosis and we get nothing.
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              • This post has been deleted. 4-8-2019 1:03pm
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        • This post has been deleted. 4-8-2019 12:58pm
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    • Here is a handy dandy guide to start with...(more) 4-7-2019 11:04pm
    • OP Here: Thank you all for indulging my silly questions! 4-7-2019 11:10pm
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      • not at all, how nice to see someone want to genuinely learn about it without judging! 4-7-2019 11:12pm
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    • DH and I were both diagnosed with ADD in the 90s. We have a son with autism. I know this isn't what you asked, but people who were diagnosed with ADD are more likely to have a...(more) 4-7-2019 11:27pm
      child with autism, we found out. I thought that was interesting. It could be for many reasons, like growing up in families where people get help when they think there's a problem, living in a community where pediatricians and educators are more likely to notice learning differences, etc.
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    • Neurological dysfunction, but on a spectrum. I have adhd, as does over 10% of the population. I only take meds for a big project. I did very well in school but had a hard time...(more) 4-8-2019 12:13am
      w/organization (my mom put labels on every drawer) and I am easily distracted and have no sense of time passing. But overall I have no complaints.
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      • ^picked a career I could thrive in. Am a journalist, would've failed as an accountant. 4-8-2019 12:14am
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    • There's something about your post that seems trollish 4-8-2019 4:41pm
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  6. Special Needs I'm trying to decide when to tell my son that he has autism. I guess just play it by ear, right? 4-6-2019 3:55pm (9 replies)
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    • How old is he? 4-6-2019 3:56pm
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      • Only seven. Someone at school told him he was autistic, but it turns out she was saying artistic and the r turned into a w. It got me thinking. 4-6-2019 4:04pm
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    • How old is he? 4-6-2019 3:56pm
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    • He knew forever. 14 now. Doesn’t care. 4-6-2019 3:57pm
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      • ^^ but that’s part of it ;) 4-6-2019 3:57pm
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    • tell him now 4-6-2019 4:04pm
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    • Don't be surprised if it's not news to him. 4-6-2019 4:04pm
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      • THIS! He knows he's different. 4-6-2019 6:54pm
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    • This post has been deleted. 4-6-2019 4:11pm
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  7. Special Needs 3 years ago my ds and I were on vacation with friends at a beach town and at night after a long day being out we were at a place at the beach for dinner, my ds (12 at the time)...(more) 3-23-2019 12:29am (12 replies)
    went and played in the sand and was burying his legs in it and just mucking around. there weren't any other kids there at the time. this woman came up and said omg I'm so sorry, your poor son, he needs help that so sad, I work as a nurse and I see that all the time, he is autistic blah blah blah..." she went on and on about it, ds didn't hear I'm sure but my friends did and they said get the fuck out of here, you are crazy etc...she kept saying Oh you just don't see it, you know something is wrong. He does have ADHD, anxiety, I used to wonder if he was misdiagnosed with other things but I don't anymore. he is away with family and they sent me photos today of him at the beach, he is playing in the sand and burying himself and all I can think about all night is that woman and is there something more I don't see.
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    • are you not with him on vacation? 3-23-2019 12:30am
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      • no, he's with family and his dad 3-23-2019 12:34am
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    • Is he just sensory seeking, likes the feel of the sand? 3-23-2019 12:43am
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      • I don't know. Actually I took him on vacation at xmas and he did it there too....he just likes it I guess, he was laughing and just having fun, he was bored too I think, no kids...(more) 3-23-2019 12:52am
        were there...he wouldn't do it in front of peers. I mean, I like the feel of the sand too!
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    • She was out of her mind to say this to you, a nurse can't diagnose this at all and certainly not from seeing him play in the sand alone. And btw there are overlaps between ADHD...(more) 3-23-2019 1:47am
      and autism, so even if she noted something it was surely some ADHD characteristic. I'm sure you have a thorough diagnosis from a professional.
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      • op-I do and have asked over and over to everyone over the years and they say not a chance its anything else. and in fact, I see him growing out of a lot of behaviours he used to...(more) 3-23-2019 12:04pm
        exhibit. But he cant focus for long to save his life, he gets very angry very quickly, I used to notice he wouldn't look you in the eyes but then saw that was only when he was in trouble or thought he was in trouble or meeting someone new...I have watched him with adults and teachers in school and he's very polite and speaks well and shows respect and though he may not stare into their face the entire time he speaks he doesn't noticeable not look at people. I dont know...he's not done anything else that's typical of autism but then his adhd doesn't seem typical either sometimes.
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    • Weird. I have a kid with autism and he actually does bury his limbs when he plays in the sand. But there's a saying "if you met one person with autism, you've met one person with...(more) 3-23-2019 2:02am
      autism." It's a behavioral profile. It's not like something you just have or don't have, like TB. So people can have some aspects that would raise red flags, without enough accompanying behaviors to warrant a diagnosis.
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      • right. when I was a kid I did that too...sometimes I still will if I'm goofing around with ds, no-one thought I was autistic. fine if he was, he would probably get way more help...(more) 3-23-2019 12:07pm
        at school.
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    • That woman was out of line to say this to a stranger. But if you do doubt his diagnosis, get another opinion from someone who will do an ADOS and observe him in multiple settings....(more) 3-23-2019 8:29am
      It's not unusual for kids with HF ASD to be misdiagnosed as ADHD/anxiety when younger.
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      • I don't really doubt it now but I wondered when he was younger...because of the severity of his moods and emotional behaviour and outbursts and smaller things like not looking...(more) 3-23-2019 12:06pm
        into peoples eyes...but that was all...and he looks in eyes now.mostly. sigh..
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    • Grown up here, and I like to be covered in sand at the beach. It's fun! Sensory input...(more) 3-24-2019 2:40am
      Totally, the weight of the sand is like a larger weighted blanket or eyeshade filled with flax seeds. I think if someone is doing this in the sand for hours on end, ignoring people shouting his or her name, too absorbed in the task to acknowledge the hunger, etc. then it's akin to a 3-year-old rolling a toy car back and forth repetitively but c'mon, it's sand! Not something we get to play in or with every day!
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      • thank you. I don't think this is indicative of my ds having further issues. if yes then fine but a pretty bold statement to make! 3-24-2019 3:25am
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  8. Special Needs Whether you like Amy Schumer or not, she talks about her dh's autism (Asperger's before it became one category) in a loving, funny way. It was nice to see. 3-20-2019 10:50am (12 replies)
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    • that woman acts like she's the only human to ever be pregnant. I used to like her but I find her insufferable now. 3-20-2019 10:52am
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      • Well, I'm just referring to the part where she discusses her dh. 3-20-2019 10:52am
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      • can you focus on the post? 3-20-2019 10:53am
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        • This post has been disliked 5 times. showI did, and I don't care because she's been so gross during this pregnancy 3-20-2019 10:55am
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          • OK, move on 3-20-2019 10:56am
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            • This post has been disliked 3 times. showI'm responding to "whether you like Amy or not" and I am saying I don't like her, so it does matter to me whether I like her or not - it makes me not find the way she talks about...(more) 3-20-2019 10:57am
              her dh funny or loving.
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              • I posted this on the special needs board because many of us have kids with autism and it's nice to see how she embraces him for who he is. That's all. 3-20-2019 11:00am
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              • Do you realize you are in the sn board? 3-20-2019 11:12am
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          • You sound awful 3-20-2019 11:46am
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    • ^^I'm referring to her latest comedy special, "Growing," on Netflix. 3-20-2019 10:52am
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    • This post has been disliked 3 times. showI agree. And I'm sure I'm not the only who can see his autism in the pics. Hope the relationship lasts. 3-20-2019 10:54am
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      • My father was very likely autistic (Aspergers) and my parents were married for 50 years. 3-21-2019 11:15am
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  9. Special Needs Girl Scouts—how inclusive are they for a girl with SN like mild autism and anxiety? 3-17-2019 5:19pm (9 replies)
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    • I think that would depend on that particular troope. 3-17-2019 5:20pm
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      • And what that actually looks like for the particular girl 3-17-2019 5:22pm
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    • Really depends on the troop...often troops are very cliquey, IME. I never had a good experience in GS myself, nor did my dd. And their activities are boring. 3-17-2019 5:21pm
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      • Np- soooo cliquey by me too. 3-17-2019 5:32pm
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    • we have a troop near us with a girl like this- doing great - but special group of people and girls. It is not associated with a school 3-17-2019 5:23pm
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      • This- same for our area. There is one fantastic leader/troop for inclusion 3-17-2019 5:41pm
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        • Any troop in NYC that is especially nice or inclusive? 3-17-2019 7:32pm
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    • My troop growing up was inclusión friendly. Way better than school in that regard. 3-17-2019 8:00pm
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    • How inclusive a troop is is a function of its leadership, not a general thing about GS. No one will have any training in dealing with ASD or anxiety, so you might need to...(more) 3-18-2019 3:06pm
      volunteer as a leader to ensure that your DD gets support, but IME most troops are very happy to have more volunteers. Each troop relaly does its own thing -- there are many badges to choose from and troops tend to do what the parents running the show are must comfortable with
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  10. Special Needs My 8.5 yr old has never had a full neuropsyche, rather had the ADOS (to confirm that he is autistic) and a psychoeducational. At the time, he was holding his own in school and we...(more) 3-6-2019 8:39am (14 replies)
    were just looking to get services from the DOE. Now we are looking at possible concerns around working memory, dyscalculia, and MAYBE mild dysgraphia. FUN! IQ is above average, etc. etc. In considering where to take him for a neuropsyche, do we need to be looking for any that are especially knowledgeable about dyscalulia (which seems to be the learning challenge that stumps people) or am I over thinking things.
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    • The neuropsych should cover all of that. I'd ask before it begins though 3-6-2019 8:41am
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      • They should, but as the mom of a dyslexic and deep into the dyslexic world, I would suggest reaching out to a local dyslexia chapter or school to get recommendations for a...(more) 3-6-2019 8:42am
        neuropsych. Some neuropsychs still have very old fashioned ideas about dyslexia, dyscalculia, and dysgraphia.
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        • ^^np. Where are you? I can find some dyslexia people for you 3-6-2019 8:45am
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          • We are in NYC...so plenty of good people. We actually do NOT suspect dyslexia, as his reading is above grade level, but if the same neuropsyches who are good with dyslexia would...(more) 3-6-2019 9:02am
            be good with dyscalulia, then recommendations would be great.
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    • go get a neuropsych. David Salsberg is great. 3-6-2019 8:43am
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      • Ditto. Just going to reccomend the same process and Dr. Salsberg. Plus, he will give you great guidance. 3-6-2019 10:30am
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      • A third for David Salsberg. He is excellent. 3-6-2019 10:07pm
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      • I liked him too. 3-7-2019 10:16pm
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    • Where/ what of school is he in now? I'd do a free eval from school to start. 3-6-2019 8:49am
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      • He is in a DOE school, ICT program. We asked for the DOE to do testing that included testing for dyscalulia and dysgraphia...and they basically said that they couldn't do that...(more) 3-6-2019 9:03am
        in-house. So even if we get them to pay for it, then, its gotta be an out of house neuropsyche.
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        • I would getprivate if you can--maybe some hospitals take insurance. CIGNA pays 5)% of mine with private psych 3-7-2019 10:14pm
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          • 50 3-7-2019 10:14pm
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            • Doesn’t matter - it’s not the insurer it’s your particular plan . I have CIGNa and they paid nothing 3-8-2019 12:36pm
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              • I had to appeal CIGNA's denial--and won. But yes, plans are different but if it is inclusive of medication issues such as anxiety, much stronger and more likely to get it. 3-8-2019 8:05pm
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  11. Special Needs 16 yo ds is very rigid and always has been but he functions reasonably enough at school and has 2-3 friends. We want to a neuropsychologist about 10 years ago who diagnosed him...(more) 3-5-2019 10:07am (16 replies)
    with ADHD and said although he has some qualities of what was then known as Asperger's, he wasn't autistic. The teen years have been hard, tho, and ds sees a CBT therapist and takes ADHD meds. Is there any value in doing a neuropsychologist visit again? Ds also already has a 504 with accommodations so I'm not sure what we would get out of it. Last thing is that as hard as it is, ds is steadily improving.
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    • probably not worth it. What would you seek to gain? 3-5-2019 10:08am
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      • I think it would be a waste. Ex dh was asking. So I wanted to get opinions here. 3-5-2019 10:09am
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        • if youre thinking he needs more support, talk to your therapists. Maybe he needs a change 3-5-2019 10:10am
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        • But what is your motivation for doing it again? Why put ds through it again? 3-5-2019 10:10am
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          • I don't think he needs it. Dad thinks there might be additional therapies DC can get with a diagnosis. 3-5-2019 11:33am
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            • np: if it turns out he is on the spectrum, then Dad might be right. He also might need certain supports in college 3-5-2019 2:52pm
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    • If he's doing OK academically, you don't want transition services post HS, then no. Waste of $$. 3-5-2019 10:08am
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    • So why go again? 3-5-2019 10:09am
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    • For some people it's important to clarify diagnosis. It helps them understand, seek certain resources, guide planning. For others it does not seem to matter. 3-5-2019 10:10am
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      • np: ...and as a child develops, a clearer diagnosis may be easier to make. op's child was 6 when the first exam was done: many difference to the brain since then, I'm sure. 3-5-2019 10:13am
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    • i read something that said sometimes autism symptoms aren't severe enough without the presence of trauma. like it isn't diagnosed unless there's a trauma present making them...(more) 3-5-2019 10:13am
      unable to cope.
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      • ? 3-5-2019 10:15am
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        • i don't know. it was somehing i read in passing, and i realized that my son was diagnosed because of the trauma of being bullied. he couldn't handle it. so all of a sudden, they...(more) 3-5-2019 10:17am
          could see the effect of the being on the spectrum
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      • I have never heard this 3-5-2019 2:52pm
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    • If you are questioning whether he truly is on the spectrum, you don't need a neuropsychologist for that. You can see a psychologist or psychiatrist - see someone who is well...(more) 3-5-2019 2:51pm
      versed in high functioning autism and perhaps do an ADOS. I know several kids who were misdiagnosed with ADHD when in fact, they are on the spectrum & found out in the later teen years.
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      • I guess I view ADHD as a spectrum disorder and so in my estimation he already is. He gets therapy, has a 504 and his big struggle is executive function. I will talk to his...(more) 3-5-2019 5:09pm
        therapist and psychiatrist but I just don't see much value in a diagnosis.
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  12. Special Needs Can any NYC parents help me understand schools like Summit and Churchill, NYS approved non-public schools that don't "accept" the autism diagnosis, but most definitely take kids...(more) 3-5-2019 8:59am (13 replies)
    with autism?! I get that the parents manage to get the classification on the IEP changed, but I guess I'm wondering how those kids actually fare?
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    • we really don't have that profile at our school - maybe 1 kid but sure.. what do ou want to know? 3-5-2019 9:00am
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    • The program does not match their needs. They make little to no progress in certain areas. 3-5-2019 9:12am
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      • Is this a joke? Half of the students at Summit are asd 3-6-2019 12:59pm
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    • The 'accept' the dx, not the educational classification. And it's b/c they do not offer the array of social and sensory supports, and behavioral management...(more) 3-5-2019 9:47am
      most kids with ASD need to thrive.
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      • ^ To clarify it's the educ classification of AUT they don't accept. And the reason is that the state does not fund them for that because they do not provide the services that go...(more) 3-5-2019 9:47am
        with that classification.
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      • Again this is not true. Summit has a whole behavioral program! 3-6-2019 1:00pm
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    • Totally depends. Summit and Churchill are very different schools with very different kids. There are many kids with HFA at Summit because that school has behavior and social...(more) 3-5-2019 1:21pm
      support evenif the schools says they don’t take that classification. Church hill may have an kid with Autism but much less likely. If they are there it’s because they have an actual learning disability and do not need behavioral or social support
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    • Summit is very good with kids who have pragmatic language delays, social delays, concrete thinkers, anxious, self directed. There's a lot of counseling in the program and they...(more) 3-5-2019 2:44pm
      know how to handle kids who have that profile.
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      • Parkside mom here...(more) 3-5-2019 2:49pm
        They take kids on the spectrum but not the AUT classification. As mom of a HFA kid who goes there, I’ll say the pros are that they do offer social skills support and counseling, and DC gets to have schoolmates who have better social skills as opposed to only meeting spectrum kids like at Learning Spring; but the cons are that they can be clueless about how spectrum kids think or how to provide ABA-like rewards to change problem behaviors.
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        • OP: thanks all, sorry I disappeared for a while there. Appreciate the info and the distinction between the two schools I noted. Not really looking for an ABA approach, but do need...(more) 3-5-2019 6:22pm
          a school with social skills support and experience dealing with anxiety. Kiddo may have dysgraphia and/or dyscalculia (but not dyslexia), which is why I was at least looking at Churchill, but sounds like that won't be a good fit.
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          • Winston is also very good with that profile, if you can handle the unfunded aspect (they do sometimes take connors cases) 3-5-2019 10:47pm
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            • Thank you...will look at it... 3-6-2019 7:00am
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    • Lowell accepts Autism. My son is there and doing well. 3-6-2019 8:52pm
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  13. Special Needs Need advice son is a junior autistic spectrum trying to figure out which would be better taking SAT or ACT? Thinking of him just going to community college but I know if he takes...(more) 2-18-2019 6:20am (8 replies)
    ACT maybe he might get a scholarship to Local college. My son is already stressing over the pressure to take 2 tests.
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    • I’m not sure how to answer this because 1. I’m a college professor. 2. Have had students who were definitely on the spectrum. 3. Have a child on the spectrum. So here it goes:...(more) 2-18-2019 6:30am
      have him take one, but with the understanding that there is no rush. Personally, I think most college freshman should have had a year in between to mature a little. I also think community college is great to get gen ed credits out of the way and get used to college. It’s also a hell of a lot cheaper scholarship or not
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      • Ditto. Also prof wth spectrum students and kid. 2-18-2019 9:42am
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    • If gets extra time dontye act. Content easier but time...(more) 2-18-2019 7:33am
      Pressured. So, if can take away time pressure will be easier
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      • My son does get time and a half for sat or act test 2-18-2019 9:08am
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    • You can also look at test-optional schools. 2-18-2019 7:46am
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    • Would he be open to taking a practice test and seeing if one feels better than the other? 2-18-2019 8:30am
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      • I didn't think of that. It can't hurt to at least ask him. 2-18-2019 9:07am
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    • Probably the best thing to do is to take practice tests of both before he decides. However, does he have time and a half for both? For the ACT, you actually have to register...(more) 2-18-2019 11:26am
      before they will let you know if he is given the accommodation. The ACT is more flexible so some students might get 50% extended time but a smaller number could get 50% extended time over multiple days. In which case, if he qualifies for that accommodation, it might be the better test for him.
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  14. Special Needs Anyone on who had dc dx’d as Autism Spectum as a teen? 2-11-2019 7:43pm (14 replies)
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    • Ds saw a doctor at 15 who left it up to us whether she included the dx in her report. She felt he met the criteria but maybe questioned the need to dx at that point. It was a long...(more) 2-11-2019 7:49pm
      Time ago and I don’t remember the specifics. Just another doctor ina long line of docotrs
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      • Can you tell me a bit more about this? What led to the dx? What has happened since? 2-11-2019 8:30pm
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    • I honestly cannot imagine that professionals and parents could miss autism spectrum for so long. 2-11-2019 10:36pm
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      • Umm I know plenty of adults who aren’t diagnosed. Girls in particular and those who also have ADHD are easy to skip. 2-12-2019 3:25am
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        • OMG, this is my dd. You could have just described her... 2-12-2019 10:26am
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    • I know a few who were given other diagnoses when younger and then spectrum confirmed by young teen years when he social deficits were more obvious 2-12-2019 10:07am
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    • My dc was dx at age 15. He was evaluated at 7 but the dx was severe ADHD and anxiety. Multiple SN schools, therapist and psychiatrist treated him until 15. Lost years. 2-12-2019 10:23am
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      • HOw did having the autism diagnosis help? I have a dd who is 8th grade and has ADHD and we think anxiety. All identified last year in 7th grade. I'm thinking she is on the...(more) 2-12-2019 10:27am
        spectrum but how would having this diagnosis help?
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        • For us, it meant there were schools that accepted dc with autism available to us. Some schools only accept dc with AS dx. They have programs where "getting stuck on something"...(more) 2-12-2019 10:30am
          was not seen as defiance but rigidity. Behavior plans are drafted by ABAs. Plus there are more resources for dc with this disabikity.
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          • Did you have any behavior issues at home? DD does well in school, over all, and doesn't have issues at school. Well, socially, but nothing a 504 or IEP c an help her with... 2-12-2019 10:31am
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            • Yes, behavior issues at home. It is the unstructured times that were most troublesome. 2-12-2019 10:37am
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              • Right. And has anything helped now that you know the autism diagnosis? 2-12-2019 10:39am
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            • Np: that’s not true. You can get social skills group or counseling or decisive functioning services all on an IEP with an ASD diagnosis 2-12-2019 11:00am
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              • Executive functioning - not decisive that’s autocorrect 2-12-2019 11:00am
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  15. Special Needs Anyone hear of an autistic child/teen going on a food strike? 2-8-2019 8:08pm (1 reply)
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    • no, but i could see my kid doing that 2-8-2019 9:47pm
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  16. Special Needs Pet peeve: Folks who post questions that do not relate to the declared purpose of an online group or board. One of my groups that is expressly for parent support for high...(more) 2-5-2019 10:34am (3 replies)
    functioning autism constantly gets posts from people who describe their kids as having moderate or severe ASD, who then wonder why they're not getting a lot of recommendations for programs that fit their needs. I feel like I can't say anything because that would hurt their feelings, but why don't admins ever steer these folks to appropriate groups?
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    • This post makes me sad. Can’t you have more compassion for people who have more struggles than you? 2-6-2019 11:22pm
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      • Also, maybe there aren’t groups, or activities for these kids, and their parents have nowhere else to go....(more) 2-6-2019 11:26pm
        I also think it’s fairly ableist to rank kids based on “functioning level.” Speaking about my own “high functioning “ ASD kid, she’s high functioning until she’s not. And she can have a huge meltdown and start self injuring under the “right” conditions, just as much as any non speaking autistic kid. I try not to judge other parents whose kids have bigger challenges than mine’s, knowing that it’s not a contest and “functioning” is relative.
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    • Where is this board? 2-6-2019 11:23pm
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  17. Special Needs I'm looking for SN sleepaway camps recommendations. My son is 11, ADHD and Autism, verbal, independent. He is on medication and needs support for social situations, but otherwise...(more) 1-25-2019 12:24pm (12 replies)
    pretty flexible. Any recommendations for a sleepaway camp?
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    • Eagle hill 1-25-2019 12:25pm
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      • Is it a special needs camp or special needs friendly? Can't tell from their website. 1-25-2019 12:27pm
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    • frost valley? also there's one on LI south shore in suffolk county and i am blanking on the name but my friend sends her ds there. 1-25-2019 12:26pm
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      • That helps. I'll look it up. 1-25-2019 12:28pm
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      • yes, Frost Valley YMCA in Claryville, NY (the Catskills). The program there is called Mainsteaming at Camp. There are a few bunds of sn kids in a camp full of mainstream campers....(more) 1-25-2019 8:46pm
        The sn kids interact with the ms kids a good part of the day. A true "inclusion program." And a very pretty location from the pictures. My dc has been going for years, and enjoys it.
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    • Frost Valley 1-25-2019 12:26pm
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    • Summit camp 1-25-2019 6:35pm
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      • Is summit funded? 1-25-2019 8:15pm
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        • a camp is only "funded" if you have the medicaid waiver and the camp is located in NYS. If that is the case, you can get either full or partial payment from medicaid. A camp is...(more) 1-25-2019 8:44pm
          not "funded" in the way that approved non-public schools are funded. Remember camp is fun, not required education.
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    • Starfish!!!! we've been going for years. Your DS sounds like mine (13, going since 8) 1-29-2019 7:35pm
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  18. Special Needs Figuring ds out. Seems like he has social communication disorder or maybe hf autism. Joyful kid, obedient, rule-follower, cooperative, terrible score on pragmatics in speech eval,...(more) 1-7-2019 9:17pm (49 replies)
    Is all over the place in conversation, terribly delayed in reading comp but excellent decoder. Has a lot of trouble staying on task or in conversation staying on topic. Tells you irrelevant things. Terrific at math and music. Nice kid, shares, is kind to others. No real sensory stuff except aversion to some sounds (me too!). Flexible in terms of he will eat anything, go anywhere, fine with new babysitters and vacations and other changes. But some of it is by determination rather than natural (“I’m being flexible!”). Was very difficult kid from 18 mo to 5 yo, stubborn, so many meltdowns, problems w transitions. But he is 7 now and a good kid. Still gives us/nanny a hard time more than his sisters do but nothing like before. School has really just started evaluating him. He is getting social counseling once a week, individual speech once a week, group speech twice a week, goals for reading comp, help with word probs, testing accommodations (though not many tests in 2nd
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    • wall of words 1-7-2019 9:18pm
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    • Sounds like a good plan! 1-7-2019 9:18pm
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    • ^feel good about this. Will also take him for an outside eval to see if it is ASD or LD or what, but for now we are content to wait and see how these interventions go. What do you...(more) 1-7-2019 9:19pm
      Guys think? I am new to this. Everyone is always like oh you gotta fight the dept of ed but we feel like this is good. We are in nyc public fwiw. Thoughts?
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      • Despite this board's stnace to the contrary, we've been well served by EI-CPSE-CSE for our HFA kid. NYC public, currently in a Nest program. 1-7-2019 9:20pm
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        • His school has nest so he is benefitting from being adjacent to that but if he continues to be behind grade level he will not qualify for nest. 1-7-2019 9:21pm
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          • Oh no - wasn't trying to promote Nest for your ds per se, just saying that the DOE isn't 100% nightmare at all. 1-7-2019 9:34pm
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            • No i got your gist. Was just saying that being in a nest school is good for ds even though he is not in it. But i would love for him to be. 1-7-2019 9:35pm
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    • is there a question here? 1-7-2019 9:19pm
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      • I ran out of room!! 1-7-2019 9:20pm
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        • that's a hint 1-7-2019 9:21pm
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          • I thought ppl on the sn board were nice. 1-7-2019 9:24pm
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            • np: Me too. This is really annoying me. Some amateur troll is being a real dick head. 1-7-2019 9:25pm
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            • There are assholes everywhere. 1-8-2019 5:39pm
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    • Have you read up on NVLD? Continue to focus on the pragmatics with social skill intervention, perhaps look into the Social Detective program? 1-7-2019 9:24pm
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      • Dh and i really thought nvld but school psych said his weak (nonexistant) verbal reasoning kind of rules that out. SCD / ASD / NVLD overlap so much. Plus he has some (I think)...(more) 1-7-2019 9:27pm
        dyspraxia that is consistent with nvld. No hope of tying his shoes, for example. That does not fit with SCD or ASD as far as I know.
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        • He sounds similar to my ds who is now 12, minus the delayed verbal reasoning. He’s come so far since he was 7, and many of the difficulties he faced are no longer a big deal. GL....(more) 1-7-2019 9:33pm
          Just keep finding the right services/programs that seem right at the time
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          • Thanks so much. There should be a consultant for navigating all this! 1-7-2019 9:34pm
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    • so what's the rest of your post? 1-7-2019 9:25pm
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      • The third bullet down with the ^ 1-7-2019 9:27pm
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        • oh, well, sounds great. I think the board is more useful when you ask small questions along the way. 1-7-2019 9:29pm
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    • Auditory processing disorder. You are hyper sensitive to sounds and perhaps would have been diagnosed in present day 1-7-2019 9:27pm
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      • I will google that. Thank you. I am unusually bothered by sounds but am excellent at communication, retain and understand everythjng i hear. He can’t. 1-7-2019 9:28pm
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        • Auditory memory and discrimination of sounds part of auditory processing issues. At age 7 though, skills may still be developing but needs to learn strategies for classroom 1-7-2019 9:30pm
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          • Hmm. Thanks. Thinm the fact that i made my giant corporation disable the white noise in the ceiling above my cubicle because i felt like i was in a jet engine is significant? Or...(more) 1-7-2019 9:33pm
            that i used to lose my mind when boys in class clicked their retractable pens? And my kids know there are certain shows they cannot watch when i am home bc they are too noisy — is that clinical and i am not just irritable?
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            • Yep, I can dx both of you. Auditory- figure ground discrimination-difficulty focusing in the presence of background noise. 1-7-2019 9:35pm
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              • That sohnds like me. Not sure it explains all of ds. 1-7-2019 9:36pm
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                • ^ok i googled. Does sound like ds. He also has perfect musical pitch and can spell everything and identify every song on the radio in the first couple of notes. Is that part of...(more) 1-7-2019 9:40pm
                  it?
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                  • ^^he also has a crazy memory for facts like ppl’s birthdays and middle names. 1-7-2019 9:41pm
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                  • For some I guess, Right side of the brain for music, art would be a strength vs Left side language 1-7-2019 9:43pm
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    • This post has been deleted. 1-7-2019 9:27pm
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      • np going to need a dx eventually if services and classroom support are to continue 1-7-2019 9:28pm
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        • Op. I think as long as school psych continues to identify defecits he can keep getting services even absent a dx. 1-7-2019 9:29pm
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          • MS and High school become an issue 1-7-2019 9:31pm
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            • In what way? 1-7-2019 9:33pm
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              • If there is not a formal dx listing strengths and weaknesses will be seen and become behavioral, student will really struggle with academics. Low self-esteem, not want to go to...(more) 1-7-2019 9:37pm
                school etc
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                • But the school psych does an eval every time you request it, showing the deficits and assets. That is what they go by. 1-7-2019 9:38pm
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                  • School psych. Most are crap in dx 1-7-2019 9:41pm
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                    • They are not called on to dx, just to review the eval for discrepancies. 1-7-2019 9:42pm
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                      • their evals are worthless 1-7-2019 9:44pm
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                        • Sorry you had a bad experience. We have found so far that they see ds accurately. 1-7-2019 9:45pm
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                          • Professional experience. Mainly NYC 1-7-2019 9:47pm
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                            • In what capacity? 1-7-2019 9:51pm
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                              • SLP private schools 1-7-2019 9:54pm
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        • This post has been deleted. 1-7-2019 9:30pm
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          • Have you been through this? Issues only become more apparent and have greater impact on academics after 3rd grade 1-7-2019 9:32pm
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            • This post has been deleted. 1-7-2019 9:36pm
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              • thinking more of a Language disorder 1-7-2019 9:38pm
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      • That is my insinct too. Just checking here in case i am being too lax. 1-7-2019 9:29pm
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    • Sounds like autism spectrum, high functioning. 1-9-2019 12:48pm
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  19. Special Needs Ds 7 has the followig symptoms-wdyt? always moving, doesn't listen until he is in trouble and then feels bad, lazy with homework most times, messy eater, sore loser, blurts out...(more) 1-7-2019 8:25am (27 replies)
    instead of waiting to be called on, plays rough, is aggressive if he thinks someone was mean to him- will call them dumb, stupid, tries to finish his work quickly, trouble cleaning up/organizing, at school will need to take all his pencil case out all over the desk, recently has developed a hand tic (right hand keeps moving while at rest- but not while he sleeps. Aside from all this he can be very loving, he loves pretend play, license plates, wrestling, cooking. do you think this is adhd? dyspraxia? mild autism? I couldn't get an appt till may so I am looking for advice
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    • some of that sounds like typical somewhat obstinate 7 yo boy. some of it sounds ADHD. you need an evaluation if you're worried. 1-7-2019 8:26am
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      • I have one but its not until May-that was the earliest I could get 1-7-2019 8:26am
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        • you can see a psychiatrist before then if you just want to see if he qualifies for an adhd diagnosis. you don't need a full neuropsych for that 1-7-2019 8:30am
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      • also, how much screen time does he get? a kid I know developed a tic and as soon as he stopped playing phone games they stopped. 1-7-2019 8:27am
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        • he gets more than id like-whenever I am doing chores - any advice on how to minimize w/out him freaking out 1-7-2019 8:28am
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          • involve him with chores. cold turkey. you just have to burn through the pain. 1-7-2019 8:30am
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            • thanks. like I said he overreacts to stuff so its going to be hard. maybe I can offer more tv instead? 1-7-2019 8:31am
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              • np. i'm the one who answered you on toddler who has a 6yo with similar issues - honestly, screen time of any sort is NOT good for these kids. do not increase it even though it...(more) 1-7-2019 8:32am
                makes your life easier in the moment
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                • op-he will just be a screaming mess, will probably start saying bad things and throwing things. also he will think I am punishing him and not understand why. I do want to lessen...(more) 1-7-2019 8:38am
                  in but need to know how without world war II
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                  • you talk to him about it when he's calm, not in the heat of it. tell him the plan. come up with a list of things he will do besides watch tv. 1-7-2019 8:45am
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              • he's 7. i have a 7 yo dd and the range of how they handle life is all over the place - some incredibly mature, some blow up if the cake is not the kind they like at a party 1-7-2019 8:32am
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                • op-some days if you saw him shopping with me you would think he was totally regular 7yo-other times no 1-7-2019 8:38am
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              • are you joking? lay off the TV and screens 1-7-2019 8:33am
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                • he is addicted. yes its bad, but most other kids I know can handle it. 1-7-2019 8:34am
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                  • eh, most other 7yos I know who are on a phone at restaurants also freak out if it's taken away. you need to lay down the law. 1-7-2019 8:45am
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                    • well the difference I see is MOST kids will be upset and say oh that sucks but mine would have a meltdown, oddly in restaurants he is o with not using a phone 1-7-2019 8:49am
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                      • so he's capable. just do it. GL 1-7-2019 8:55am
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    • ADHD. Hard to know with dyspraxia or other learning difficulties u less tested. How does he do academically? 1-7-2019 8:27am
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      • he is just average. definitely on grade level but not advanced. is trouble is rushing through and not following directions on tests - he is L/M reading level so its not that he...(more) 1-7-2019 8:29am
        can't read it
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        • My guess would be that it’s more the focus/distraction that gets in his way 1-7-2019 8:31am
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          • ^i would start giving him omega 3 supplement (up to 1k mg/day) 1-7-2019 8:32am
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            • I do and it seemed to work at first but not anynore 1-7-2019 8:33am
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            • ^you may find this interesting: https://www.additudemag.com/symptoms-of-add-hyperarousal-rejection-sensitivity/ 1-7-2019 8:35am
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          • I think its more that with something more complex he feels overwhelmed. I find with large cleaning chores (toys) I have to direct him into small chunks not just say clean all your...(more) 1-7-2019 8:32am
            toys or he has a meltdown and asks if I can do it for him
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            • that's part of adhd - you can't organize the instructions and steps so you fail at multipart things 1-7-2019 8:33am
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              • yeah--and I worry as he gets older and the teachers give more multistep instructions 1-7-2019 8:35am
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  20. Special Needs It’s time to get 7 yo ds a private eval. Seeking np recs in nyc. He is a good boy, bright, generally cooperative. Testing shows extremely slow processing, extremely good working...(more) 1-4-2019 8:40am (25 replies)
    memory, and on the speech/language he has articulation problems (l and r), most other areas normal, but very very low on pragmatics. It is obvious to me that he has something in the area of nvld or scd or mild autism. He does not have any repetative behaviors and he is sensitive to other kids when they are upset. He struggles tremendously with visual/spacial, cannot do legos. Taught himself to read but does not understand what he reads. I don’t know if it is worth trying to get the school to pay for an eval or if we should go through insurance or just pay, so right now open to all advice and specifically looking for doctor recommendations. IEP meeting is monday. Thank you!
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    • Good luck! 1-4-2019 8:41am
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      • Thanks 1-4-2019 8:41am
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      • ^^ sorry - didn't see that you were looking for advice. I thought you were just sharing! 1-4-2019 8:42am
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        • I’ll take the good wishes anyway 1-4-2019 8:44am
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    • I think if you can afford it, it's good to pay a private doctor to evaluate him. They will take the time to do a thorough individualized report. The schools just aren't going to...(more) 1-4-2019 8:44am
      have the bandwidth to figure out what he needs. I would ask other parents at your school who they used and were happy with.
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      • My understanding is that there is a way to get the school to pay for a private eval if you disagree with the school’s eval, but 1) i don’t know whether i agree with their eval and...(more) 1-4-2019 8:45am
        2) I am not sure it is worth wasting precious months battling them to pay. We have insurance and could figure out how to pay. Money is tight but we are not destitute.
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    • Where are you? WeWe ended up doing the private because the timeline for the school evaluation was almost the whole year. Even with going private (and we paid all OOP) it still...(more) 1-4-2019 8:44am
      took6 months to get everything done. We felt it was important because our happy go lucky boy was starting to hate school and himself and felt that if we waited and did the school's timeline, it would not be a good situation for him. Good luck, it's a hard road but we received so much clarity and now can actually give him the help he needs.
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      • We are in brooklyn. Yes just the speech eval took the whole first semster. The waiting is frustrating. Hence my instinct to just pay. 1-4-2019 8:46am
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        • we are in NJ. if you are having an IEP conversation, then the school is taking it seriously. i don't know, it was so hard to figure it all out. and then we had a bit of a struggle...(more) 1-4-2019 8:52am
          with the school in that they technically don't HAVE to take the private eval's into consideration (i think it stopped because someone with a brain said, listen he's got issues, we do the test and it costs us or we follow this adn it's free to us).
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          • Call me naive but so far the school has been great. 1-4-2019 8:56am
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      • This. If you can afford it....the DOE doesnt have the rsources, plus, it’s an educational evaluation. It isnt the same as a full neuro-psych eval 1-4-2019 8:49am
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        • DOE pays for private neuropsychs. DOE does not employ PsyDs they have to farm it out. 1-4-2019 6:14pm
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    • We paid out of pocket. It's not too early. 8yo for us 1-4-2019 8:45am
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    • We saw Dr Norris-Brilliant (nice name!) at Mt Sinai years ago. I was happy. 1-4-2019 8:48am
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      • This exact doctor was recommended to people I know in Brooklyn. The recommender said that the eval was much more detailed and individualized that what you would get from DOE. 1-4-2019 8:54am
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    • I paid $6K for a neuropsych eval that turned out to be incomplete. Be careful who you choose. 1-4-2019 8:53am
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    • Dr. Laura Tagliareni has been so wonderful for us. Great, thorough decals. There after when we need guidance. Has helped with school decisions. Have been with her for years. She...(more) 1-4-2019 11:58am
      really *got* my DC and helped us through some very trying times. GL:)
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      • ^^^^^ evals....typing on phone! 1-4-2019 11:59am
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        • Thank you. If we are not sure whether this is LD or spectrummy stuff, do we still start in the same place? 1-4-2019 12:02pm
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          • This post has been deleted. 1-4-2019 2:55pm
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          • Absolutely. May have components of each. They are great in that office at all. 1-4-2019 3:20pm
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          • np: I second Dr. Taglarieni. She's excellent and her partner, Dr. Salsberg, have seen it all. There are not two better people to tease out what's going on with your kid. 1-4-2019 8:45pm
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    • I had DOE pay for my $6500 private neuropsychological evaluations. 1-4-2019 6:15pm
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    • David Salsberg or David Tagliareni of PALS. They are the best....(more) 1-4-2019 8:45pm
      www.nypals.com
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    • Your little one sounds like mine at that age. My son is 11, and struggled with the same issues as yours. I second taking him to see Dr. David Salsberg--he will get your son. When...(more) 1-5-2019 9:12am
      other doctors dismissed my son, Salsberg saw things in him that no one else did. And with his eval, support and insight, my son is thriving at an amazing middle school, and doing more than I ever expected. Hang in there. Good luck. It does get better with time.
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  21. Special Needs DS was first classified as Other Health Impaired, shortly after he was formally diagnosed with autism but I never got his classification changed through the school district. I...(more) 12-22-2018 10:18am (5 replies)
    think it needs to be changed so that he gets more appropriate services. Is that right?
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    • yes, and you have to go through whatever red tape (usually not too daunting) the School District Special Education Dept requires 12-22-2018 10:19am
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    • Only if there are services that DS needs that are currently not being provided like social skills or the like 12-22-2018 11:45am
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    • We had a similar scenario. It never affected services, which were based on his functioning rather than diagnosis or classification. All the same, he was finally...(more) 12-23-2018 3:36pm
      reclassified as AUT in 8th grade. Mostly because his dyspraxia was remediated to the point where it wasn’t the basis for any services any more, so the OHI made no sense.
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      • Just curious did you get anything different or additional once the classification was AUT? 12-24-2018 10:06am
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        • Hi, our meeting is in a couple of weeks and I will keep you posted. 12-29-2018 2:56pm
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  22. Special Needs What's the earliest signs of autism would start showing up? 12-20-2018 1:45pm (30 replies)
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    • toddlerhood 12-20-2018 1:45pm
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      • 2yo-ish? 12-20-2018 1:47pm
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        • yeah, even younger sometimes. 12-20-2018 1:47pm
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          • 12-18 months 12-20-2018 1:48pm
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            • i would say closer to 18 months, but certainly if they aren't hitting milestones consistently, there's an indication even younger 12-20-2018 1:49pm
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    • 6 mos 12-20-2018 1:48pm
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    • For my ds it was obvious to his daycare by 17 months. He was my first so I didn't catch it. Looking back (knowing what I know now) , it was earlier. 12-20-2018 1:48pm
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      • can you elaborate? 12-20-2018 1:50pm
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        • ^^is it general not meeting milestones or specific things to look out for 12-20-2018 1:51pm
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        • There was no reciprocal or gestural communication. Ds didn't imitate us or point to things he wanted. I had people who didn't know each other say things like "he has the soul of...(more) 12-20-2018 1:53pm
          a poet" and things like that. Basically, they also saw that he wasn't related in the same way other kids were -- to them he looked dreamy. The thing about ds is that he smiled and looked right at you so that threw me off and people who don't know about autism. His daycare saw it and told me at 17 months to have him evaluated. i took him first to my ped who said he wasn't concerned. Fortunately, the daycare shook their head and were firm about the fact that he needed an evaluation.
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          • How old is he now and how is he doing? 12-20-2018 1:55pm
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            • He is 15 now and actually doing pretty good considering. He's in an SN school, but if you had seen him at age 2 when he was not related at all, to where he is now, he is a...(more) 12-20-2018 2:01pm
              different person. He is related, verbal, has some friends, likes to learn, etc. we have some good conversations. His big issues now are limited interests, some pragmatics and controlling his emotions. but with meds and therapy, the latter is getting much better. Since he's 15 now, he is aware of his issues and that helps.
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          • very interesting. it's good they were so aware and insistent. thanks for posting. my db isn't doing certain milestones that i would've expected by now, but i think it's too early...(more) 12-20-2018 1:57pm
            to be a sign of that.
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            • How old is your dd? 12-20-2018 1:59pm
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    • for my ds, by 2. I know a woman who said she knew things were very wrong by 15mo (her dd is now 18, non-verbal, aggressive and lives in a group home) 12-20-2018 1:52pm
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      • Oh how sad 12-20-2018 1:53pm
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        • it is, but she's accepted the best things about it for her dd, and the group home living has actually been very good for her (she's lived there since she was 12). 12-20-2018 1:54pm
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      • op: thanks for posting. 12-20-2018 1:58pm
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        • NP: You can always post on the SN board. People may not respond right away since there are fewer people on the board, but they do respond and are very helpful 12-20-2018 2:03pm
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          • nnp: this is the special needs board. 12-20-2018 2:05pm
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            • Ahh... Yes. 12-20-2018 2:05pm
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    • there is a website that shows videos of infants who were later diagnosed with autism and points out the signs. I will look for it 12-20-2018 2:27pm
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    • our dc was dx'd at 2.5 but, with hindsight, we started asking the pediatrician at 4months. 12-20-2018 2:48pm
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    • my dc with (HF) autism was different right from the get go. but OTOH there was nothing so obvious that you knew it was autism until around age 5 12-20-2018 2:49pm
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    • Looking back, I can say that my ds was different from his (subsequent) sibs from newborn.. the fixation on lights and patterns, it almost made him high. He's now 13, HFA, verbal.. 12-20-2018 8:11pm
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      • but he was not DX'd tiol nearly 3 (and only so b/c people here pushed me to seek an eval and I am FOREVER grateful) 12-20-2018 8:11pm
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    • For my child, 8 months. For many children, even earlier. Doctors say they can look at videos of babies 8 months and younger and can pick out the ones likely on the spectrum. 12-21-2018 2:30pm
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      • can you tell me what signs to look out for in a child that young? 12-21-2018 2:36pm
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  23. Special Needs I’ve always felt teen niece might be in dx’d autistic. Her mom lives in a rural area and has not had good services. She is coming to nyc next month for a month. Can anyone...(more) 12-18-2018 7:44am (10 replies)
    recommends a Dr. She could see who specializes in diagnosing teen girls? I’ve been reading up on how so many go in or mis dx’d. Thank you!
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    • Sorry, UN diagnosed, not IN diagnosed 12-18-2018 7:45am
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    • What about insurance? Does mom want her to be seen and diagnosed? 12-18-2018 7:45am
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      • Yes, she is hoping to have her seen. She has minimal insurance, I believe. But at this point, is willing to pay. 12-18-2018 7:46am
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    • A comprehensive evaluation takes more than one appt, and those appts generally get scheduled months in advance. Maybe try a research study for some information, although it won’t...(more) 12-18-2018 7:54am
      Be comprehensive
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    • My DD has LD and ADHD. We love our NP, I'm sure she would be good for this but you can call and ask to have a qucik phone consult with her. She has just been amazing with us,...(more) 12-18-2018 8:09am
      through many years. Dr. Laura Tagliareni. I am a social worker myself, so have some other suggestions as well. Felicity House, is a program for women on the spectrum. Site is: https://felicity-house.org/
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      • Also...check out Spectrum Services:http://www.spectrumservicesnyc.com/ 12-18-2018 8:10am
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    • Is the mom on board with having an eval done? And how is a teen leaving school for an entire month? 12-18-2018 9:47am
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    • It will be hard to get an appointment for next month at most doctors offices. Besides Spectrum Services, I'd also contact Felicity House in NYC - it's just for women - they might...(more) 12-18-2018 3:48pm
      have ideas for resources. Also Mount Sinai has the Seaver Center for Autism. I'd contact all of these places to get a spot for an eval next month. HF girls are often not diagnosed or diagnosed very late. A good psychologist can diagnose her or a psychiatrist as well.
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    • OP: Thanks so much everyone! 12-18-2018 7:36pm
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  24. Special Needs My father told my mom not to help me when my 3 yo was in the hospital for nearly 4 months with uncontrolled seizures and my other kids were 6 and 10. Since then I started therapy...(more) 12-13-2018 8:34am (28 replies)
    to get over my anger and help cope with my son's SN and other demands on me. Therapist recommended family therapy, which my mom and I are doing. Family therapist says my dad cannot feel empathy or regret because he is on the spectrum. My mom has asked for articles to help understand autism spectrum. Can you recommend an article?
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    • Has this therapist met your dad? 12-13-2018 8:35am
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      • He came to about 4 sessions before he dropped out. 12-13-2018 8:58am
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    • is your dad open to this sort of information at this point? is your mom now helping you and not just doing his bidding? 12-13-2018 8:35am
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      • My mom visits twice a year without him to help me with the kids. She can't watch my son, though, because within a minute he either elopes or scalds himself on her coffee or...(more) 12-13-2018 9:01am
        something like that. She is trying, by coming to therapy. But certainly he is her priority. She feels dependent on him. She doesn't know how to make travel plans. She didn't learn to use an ATM until she was 47, she asked him for cash each week and she had to explain every dime, even though she worked full time.
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        • I think you need to lower your expectations of your parents. 12-13-2018 9:12am
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    • I think it is great you are doing the work - really impressive. I hope your youngest is feeling better. I don't know if the therapist can identify your dad as being on the...(more) 12-13-2018 8:36am
      spectrum without meeting your dad. Second, his being on the spectrum and his being emotionally controlling (and your mom being controlled) are not the same issue has just his being on the spectrum.
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    • Therapist is not in a position to diagnose your dad. 12-13-2018 8:38am
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      • She had about 4 sessions with him but you may be right, I'm not knowledgeable about this. 12-13-2018 9:01am
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        • I would question any therapist that makes that sort of leap in ITV diagnosis 12-13-2018 9:08am
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    • Why does your mom listen to him? 12-13-2018 8:38am
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      • She thinks he is brilliant. He has a PhD in science and has been self-employed as a technical writer and editor. He has had steady jobs but always lost them. 12-13-2018 9:02am
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    • People on the spectrum can still understand that people need help, though. 12-13-2018 8:42am
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      • He says that I have a mental healthy issue because I'm still mad at him 4 years later. I answer, of course I have issues, that's why I go to individual therapy (2 years now) and...(more) 12-13-2018 9:03am
        a psychiatrist (who only wants to see me once a year, I'd be willing to go more often). My dad believes mental health professionals are all incompetent or worse.
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        • There is so much more going on here if a psychiatrist wants to see you only once a year 12-13-2018 9:08am
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          • or: ITD. Psychiatrists are providing medical treatment. So, typically prescriptions. If OP needs talk therapy, she needs a different doctor. 12-13-2018 9:18am
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    • People on the spectrum experience empathy and regret, they just often have a hard time processing and expressing these things. This therapist sounds quick to generalize and label....(more) 12-13-2018 8:45am
      Excellent book written by a very caring adult, married dad on the spectrum is *The Husband's Guide to Best Practices* by David Finch. If anything, your father sounds narcissistic, maybe just a limited, self absorbed person. Check this out. It shows that people on the spectrum can and do step up to deal with issues when they have the desire and support: The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome
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    • Why did your mother obey his command when this family crisis occurred with her daughter and grandchildren? Does he overrid her or is she oblivious? 12-13-2018 4:29pm
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      • She helped for half of the crisis. Each day he told her to come home. She'd tell me she was leaving, so I begged day in and day out. Hospital was an hour from home. 12-13-2018 8:09pm
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        • I will try to say this gently: at least you have parents who are still alive and even slightly able to help...(more) 12-13-2018 9:32pm
          Many people either have no living parents, or parents who rely on them for significant support; either way, they don’t have the luxury of any relatives who can provide the slightest relief in a crisis. Just some perspective
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          • Np. If you do t have loving parents there is no expectation. Having parents who watch their child in a crisis situation and can be there to help but just choose not to is really...(more) 12-14-2018 10:41am
            Kick in the ass. I’m not suggesting that grandparents should give up their lives for their grandchildren but if you see your dd struggling and you know it’s a temporary situation with a grandchild in the hospital and you can do something to ease the pain why wouldn’t. Her dads behavior is sadistic
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            • >>>meant living, not loving 12-14-2018 10:41am
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          • Speaking of perspective, you are out of line and tone-deaf. It’s like you didnt read her post at all, just focused on the detail of her larents being alive. 12-16-2018 8:18am
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        • Np: regardless of whether your father is or is not on the spectrum, their problems here that only you can address. Not your mother, not him. 12-13-2018 9:35pm
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  25. Special Needs Please share your experience with medication for a child with anxiety and irritability - considering prozac for 9yo ds...(more) 12-10-2018 9:42am (11 replies)
    Quirky/mildly autistic (Aspergers). Very bright, very talkative - can shout and blame others when things go wrong. Never medicated, lots of therapy - we are at our wits end. School is complaining.
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    • friend's son went back to his GP after medication and the GP thought he seemed like a different kid. same age - aspergers disruption etc. 12-10-2018 9:43am
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    • have you considered strattera. my ds is on it for adhd with oppositional tendencies. it works to a certain extent on the irritability/anxiety/frustration part for us. maybe...(more) 12-10-2018 9:44am
      brings it down like 40% at home but unfortunately not enough in the school setting but I'm sure for some dc it would
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      • He is not hyperactive, i thing that was an ADHD drug.. 12-10-2018 9:46am
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        • all of these drugs have many effects. this is not a stimulant. my ds is also not hyperactive; he is inattentive with oppositional tendencies. 12-10-2018 9:48am
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          • NNP - this is right that strattera is not a stimulant. It is a blood pressure reducing med. 12-10-2018 9:49am
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            • No it is not. It’s for ADHD. You are confusing Strattera with Intuniv (and Intuniv is also for adhd but it’s a long acting formula of a blood pressure medication called Tenex) 12-10-2018 10:54am
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        • I'm a NP and my dd is 14 and was identified as having ADHD and anxiety. Her anxiety is the biggest issue and I'd say the Vayvanse (ADHD stimulant) does help even her out overall...(more) 12-10-2018 9:48am
          and decreases her inflexiblity, irritability.
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          • It’s totally different with a spectrum kid. 12-10-2018 10:55am
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    • My 11 yo dd (NT) started on Lexapro for anxiety about 3 weeks ago. Things are SO SO much better. 12-10-2018 10:01am
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    • Meds have been very helpful with this, both Prozac which cut down on some of the overall anxiety, and then we recently added Intuniv which has made a huge difference with the...(more) 12-10-2018 11:51am
      irritability and oppositional behaviors.
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      • Np: interesting. Intuniv made my dc really irritable 12-10-2018 6:25pm
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