My sons 1 year re-eval was this morning...

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Angelbear,

Yes he has several special interests. He's really into human anatomy and studies college level books on that, greek mythology, rabbits and so on. I've got several special interests of my own and am not in the spectrum. I think that special interests can also be the result of higher level IQs and the need for intellectual stimulation, not to say that a 2yo needs to have them to be smart. I don't think I started having obsessive interests until probably 5th or 6th grade.

Not ONCE did i ever say that i deemed him "NORMAL". I actually loathe the word "normal" because there is no normal. I don't wish my child to be like every other child...I wish him to be who HE is. Whether its autistic...NT...or somewhere in between. If I wanted him to change, that would be wishing away who he is. Something I would never ever want.

I think your outlook on your childrens situations are refreshing and wonderful. I WISH i could have been like that, but i am being honest when I say I cried a lot and obsessed a lot. Because when you DO NOT KNOW what is happening to your child it is scary. To ME autism was something i was very unfamiliar with. When there was even in inkling that he might be on the spectrum, YES it scared me. Why is that bad?? I didn't know what it meant. I didn't know how life would go for him. I just wanted him to be happy. That is IT. It is what I prayed for. I didn't care about me, not for one second. I cared only about him and his happiness. Screw what other people think...he is MY kid and a boy who was always wanted and loved. I was just scared and yes I did obsess. I worried about getting him enough therapy to help him speak. He spoke at 19 months after not ever really babbling. He slowly stopped doing a lot of the things that had originally placed him on the spectrum. Maybe he is a rarer case...maybe it wasn't autism to begin with which is what his neurologist believes. Who knows.

You have to realize how hurtful your words are. You know nothing about me. I have NEVER taught my son that autism was a bad thing. Never. I gained acceptance that life for him would always be a bit different that "typical" and you know what? My family and I have learned a ton about autism and have learned how much is involved in understanding. Your words come out of anger towards others and things you've heard/witnessed and maybe you need to try to see things through the eyes of someone who started out knowing very little about autism.

to answer the other question...my son has a bunch of interests but nothing too specific. He likes what most 3 year old boys like. Trains, cars, blocks, drawing and watching disney movies with his mama. He seems to be of average intelligence...his testing at school showed across the board average ranges..what is funny to me is that his receptive skills are higher than average...and when we started early intervention at 18 months old, receptive skills were placed at a 9 month level.

As I said...educate yourself! ....And if what you say is true, that you want your child to be who HE is than why do you obsess over him possibly being Autistic? Why are you running to neurologists?
I also didnt say that you specifically taught your child that Autism is a bad thing, I am saying by your actions and feelings toward him being diagnosed you will teach him that. No, you did not use the word "normal" you used the word "typical" which is the way you obviously want your child to be. I do have the tendency to get angry when people talk about autism as if its the end of the world and, you are right...I dont know you and Im not angry with you, Im angry with what you have written.
I was fine with your first post but you ripped our Moderators head off telling her she "rained on your parade" because she had the audacity to disagree with your doctors statement that kids are miss diagnosed with autism when they have attention deficit hyperactivity disorder and that you "knew" you shouldnt post on boards like this? What was that supposed to mean?
All Im trying to let you know is that there is way too much ignorance about autistic people and we, as autistic people and children, suffer for it. Most of the reason Autistics are in pain or have been in pain is due to lack of knowledge....we are discriminated against because we are viewed as diseased or crazy, people to be avoided and shunned. Im not saying you think this but when you make statements saying that you were so obsessed with your sons Autism that it consumed your life it sounds to me like a ploy to make people feel sorry for you like its something awful or fatal. This is the problem, people need to learn.....It is not so awful! Be respectful of us and we will be respectful of you....Its good that you want to know the answers but maybe you are reading and listening to the wrong material. On this board you will find Autistic people....so you see why I took offense to you saying that you knew you shouldnt post on boards like this.
Its good that your son is doing well, Im happy for that....Im also happy that you want to get better educated. No better people to listen to than adults with Autism, like Temple Grandin...have you read her books?

Lilolme, I am so sorry for the way you were treated growing up. You said that you were called "weird, stupid, ret*d, learning disabled" Well, I think that is why it can be frightening for a parent to find out about their child's autism. I can embrace and love my son unconditionally for who he is and for all of the quirks that he has. However, it is the world that cannot, and that is what makes it so hard for some of us.....We want to protect our children from how the world is going to treat them.

I am so thankful that there is so much information and awareness of autism out there. I think it will help people to better understand.

My apologies. Sometimes I don't figure out how to post things in just the right way ... I did worry about that one a little.

This is the part I wish you had posted the first time. I think parental instinct is so very, very important in these situations. I can always applaud someone getting confirmation that their feelings are right. It is frustrating to be told something and then feel it doesn't fit. Not because you think that something is "awful," but because it doesn't feel right, and if you don't have it right, then it cannot help you.



Since that was my post, I guess I wasn't entirely sure what was going on and if you should be celebrating. In real life, what a child has doesn't really change. They are either autistic or they aren't. It is still the same child; all the doctors have given you is a label, and as we have talked about often in this forum, with a very young child, it is hard to know if that label is correct. I did not believe, and do not believe, that your child could be autistic one year, and not the other, and when you talked about "some traits" was concerned that you were a little too reliant on the words. Now that I've heard you always had trouble buying the diagnosis, I realize why you are celebrating: you finally have the words that fit your instinct and what you, as a parent, know. Without that piece of information, I didn't get it. Perhaps I still shouldn't have posted as I did, but the goal on this forum is to make sure parents have everything they need to be the best parents to their AS child they can be, not to make parents feel great. There is no hope that a child will become a different child, and allowing such a perception to grow would be counterproductive. But there certainly is the possibility that a child is different than the professionals thought he was, and there certainly is hope that a parent will finally find answers that fit what they know in their hearts about their child. If you've read my other posts on this forum, you will know that I firmly believe in parent's doing their own research and questioning, and working at it until they have an answer that fits their unique family.



You have. For me. Thank you. I am thrilled your son is making good progress, and that you are successfully removing co-morbids that have stood in the way of him being the best "him" he could be.

This has been happening for generations. It just wasn't always called autism.

When I was a child, the boy next door was one of those "weird" kids who did not speak until he was 4 or 5. People in those days just dealt with it, if the child was not violent or dangerous, and it was understood that "some kids just are that way." Once he was speaking, it was clear he was a genius, and still very different, and he has since made his fortune founding his own Silicon Valley company. Now, sure, I can say, "oh, I bet he is Autistic!" But most of my life, he was just the boy next door. He's never been a case study, he isn't in any statistics, because his parents were able to get him through life successfully and with love, just as so many parents are able to do today. It could have gone another way, which you know when you read adults post on the other forums here, but it didn't. There are many other stories just like that one. That is autism; a very different and unknowable path of development. With love and patience, it will work out fine for your child, too.

My sister considers herself ADHD, and we think our otherwise mostly NT daughter might be. My sister feels there are much better ways to learn to manage it than medication, as medication is known to wear off, while the strategies she eventually figured out for herself (she had no diagnosis back then) lasted a life time.

Well said. I'm not convinced he isn't in the spectrum somewhere, but it's just a label. About all we know for sure is that he isn't NT. He's doing well overall. I'm very interested in cognitive development and his case is very interesting so I'm naturally very curious about it, but not worried.

I've heard these kinds of claims but can't find any science to back it up. Medication isn't always the right option but for many people it is a really great option.

I think that some of the meds have a bad rep because they've been used incorrectly. Many pediatricians will just prescribe whatever the latest drug rep has been pushing and never really deal with the side effects. Not every med works well for every person, and for some people none of the current meds work well. All ADHD meds are stimulants and they do pass through the system quickly and wear off so behavioral issues should always be addressed.

My middle child is pretty much non-functional without his ADHD meds. His problem is focus and an extremely low energy level (he wears himself out mentally and is always exhausted). He can't keep a thought in his head for two seconds and so can't complete even the simplest task. He has an IQ in the 130/140s so this is incredibly frustrating for him as he craves intellectual stimulation, but can't really do much about it because he can't focus long enough to really get into anything. With his meds he's a happier boy. My little guy and I use Concerta. My live is 100% better with Concerta than without. I functioned for 40something years without it, but with it I'm so much better and happier. I don't feel at all different but I'm not constantly forgetting things or talking too much.

Meds aren't always the best choice and behavioral issues should always be addressed, but for some of us the meds are a wonderful thing.

DW-what type of behavioral programs are out there for ADHD? So far my son has just been getting therapy to address AS issues-Physical therapy for his low muscle tone, OT for fine motor skills, and speech therapy. I just don't think I have read much about therapy for ADHD......

Thank you angelbear and I want everyone to know how thankful I am that I had my daughter. My last child was the first to be diagnosed with Autism. I was completely ignorant of Autism. Like many parents I didnt see it, but then again...I didnt notice anything. It was my husband and the rest of my family that did. One would think that after 4 other kids I would notice that she wasnt pointing, talking, waving or making eye contact. She spent hours spinning and lining plastic animals. I was in denial...but it didnt last long and I started inhaling every bit of information on Autism and found that it was nothing like I thought it was. When I took her for her first speech evaluation (as she still wasnt talking right before her 3rd birthday). She would babble and make animal noises. They put us in a room with a few other kids and the speech pathologist was staring at her and looking concerned. I finally asked her "could this be Autism?" she immediately looked excited and said "I would go with that" . I was not upset when she was diagnosed....I was happy that she would get the therapy she needed to be able to learn how to communicate as her babbling and pulling me to things were an obvious clue that she desired that. I guess I was just kind of broken in due to my first son being Bi Polar....Autism was nothing compared to that.
I do want to and I do protect my kids....I have the Mother Bear syndrome and I advocate for them. A year after my daughters diagnosis I was diagnosed (my husband diagnosed me before he told me he thought I had it ). My eval was pretty quick....my Asperger's is pretty obvious. My doctor treats mainly kids with autism and Im pretty sure Im the first woman he has diagnosed. My younger son and one of my older daughters were also diagnosed with Asperger's shortly after me. We have realized that it is actually quite genetically linked in my family. My Grandfather was an obvious Aspie, like me. Anyway, Im taking over someones post and Ive already upset her enough so Ill end this on a good note.
Lets all advocate for a healthy view of autism so no one else has to suffer.....no more suicides or self injury due to being bullied and tormented. Its our job to teach tolerance and acceptance. Shesh, I sound like John Lennon...guess thats not a bad thing!

One more thing....NEENER to the people who called me a ret*d and learning disabled....I have an IQ of 123 which makes me smarter than the average bear! (I watched too much Yogi Bear as a kid anglebear...you didnt take that comment personally did you? ....this is an example of my over thinking, I annoy myself but if I dont say anything then Ill worry)

Last edited by liloleme on 20 May 2010, 1:35 am, edited 1 time in total.

Kiley and angelbear - I honestly don't know of any official programs, and I don't think my sister does, although she has done all sorts of unique therapies that she has found helpful for various issues in her life. The things she talks about have been kind of greek to me I've asked her to try to work directly with my daughter, just sharing personal experience and what works for her, much as the adults do here. Very informal.

I didn't post that to rule out med's - I know they work well for many. But I also understand they lose effectiveness over time, and you have to keep up'ing the dose. At some point, you max out. So, anything that can push that as far back as possible is a good thing, right?

When it comes to kids, I think you have to try everything else first. Medication is the last resort. But I do trust that the parents I talk with here have made careful and informed choices. I'm trying to keep information in the mix, not judge anyone. I know all too well how much easier it is for everyone around us to offer our kids medication, than to help us do the complex work of figuring it out without medication. Someone has to be the offsetting voice.

Thank you for everyones kind, clarifying responses. I never ever intended to post here and cause any kind of upset. I AM educating myself (it's been a gradual education process since Johnnys journey with autism began 2 years ago). I have been involved with his school, therapy etc since the beginning and will always continue to educate myself.

I do think that its a normal and natural reaction for many many parents to obsess and worry about autism because they don't know anything about it aside from how its portrayed in the media. Todays generation of children being diagnosed with autism sheds a very different light and I really honestly hope that as time goes on and more and more children are diagnosed, it isn't seen as this horrible thing that will debilitate children and cause them to not have a "normal"life.

Lilolme-I took Johnny to the neurologist because I HAD to. He went there last year and received his pdd-nos diagnosis. This was his one year re-eval.

When i left last years appointment, we had a team of doctors scratching their heads trying to figure out how to "label" him. "One foot in, one foot out of the spectrum" is what we were told. His language wasn't really "there" yet. It was just emerging and a lot of it was echolalia. But he did many things considered "typical". For example, on his report it states "Johnny presents as more social than typically seen with a child on the autism spectrum, however he has met criteria enough to warrant a mild pdd-nos diagnosis at this time".

They told us when we left that with more language comes more communication and socialization. And if these things emerged, we could see the diagnosis change the following year. So that is how we left....being told our kid seemed pretty typical but he hand flapped and didn't have enough language. He also didn't engage much with the instructor. He would pick up the toys and run over to us and show us them instead. Which is good, but she wanted to see an interest in HER as well.

this year it was just all different. He talked to the doctor a lot, tried to listen to her heartbeat with the stethoscope, asked her questions as well as answered all of her appropriately. He even joked with her.

Who knows. I really don't know what the future holds but i educate myself everday and i will always be reading about autism because i want to know everything about it. I think I've come pretty far as well. I'm really proud of my little guy for going through so much these past few years and just really making gains...just like I know you all feel the same way about your kiddies.

Thanks again everyone. I appreciate the nice words and I'm sorry I have been defensive. It's been one long month, lol, Did i mention i have a 10 month old son who is taking his first steps?? Nothing like never sitting down again, lol