Thank you for your input! I have to leave in about an hour to take my 2 1/2 year old daughter to be evaluated by an developmental pediatrician for Autism. I am so nervouse and scared and relieved at the same time. I really do appreciate your positive outlook on recieving the offical diagnoises of Autism. I will keep this in mind when the doctor gives me the news today!
My grandson was diagnosed at the age of 2 although I suspected it for about a year before that. My daughter of course was not willing to accept it. She said there is nothing wrong with him, he will catch up. That was a year ago and he isnt 'catching up' he is getting worse. My reaction was one of worry. I worry about his future. Another was frustration. Trying to find the right help for him is very hard. Nothing seems like it is good enough. By the way, his score on the CARS test was 47
Phil did the doctors give you any positives when your son was diagnosed? We had a team of professionals that evaluated him and I was told that I needed to be prepared because I most likely wont be able to care for him by age 7. They also told me to stay away from the internet for it has all kinds of false info. The internet is the reason my son is where he is today. I mourned for three days and then started fighting like hell. Thanks for this video!
i knew something was wrong long before she was diagnosed. my family wouldnt hear me out till i finally brought up her symptoms to our family doctor. after being evalutated, on her 3rd birthday, they finally came to know the truth i had known all along. I it hurts. I felt sad, i relized that she was still my little girl. nothing had changed. and whatever or however i could help and support her i would. though she is delayed in some instances, she is brillant in others. love and support forever.
When I learned that my son has autism the only thing that I could is to accept my fate along with his. I have worked enourmously to make sure that he receives all of the services and therapies that I could conceivably get for him. While he still has issues, he has progressed. I can tell you that my constant advocacy for him have pissed a few people to the point that some may be burning black candles to see my untimely death, but it all have been worth it!
but diagnosis, either way, is of paramount importance for the individual it most concerns, the possible autistic, and should not ever be impeded by anybody
i agree... speaking as one diagnosed very recently (i'm 45) with aspergers syndrome i'd say it's the stigma and ignorance surrounding aspergers syndrome that makes it difficult for parents to accept or digest... if it were seen for what it actually is then nonacceptance wouldn't be much different to racism... except of course that 2 germans, for example, couldn't give birth to a chinese kid... aspergers is like a different culture... that's how it feels to me: a different culture to my family
I agree with you very much asma74 Becuase I have a 2 year old named mikaela , who i know she is autistic and almost everyone i know agrees and i think it will certainly be a relief to hear a doctor tell me what i already know because then we are on our way to recovery through treatment and therapy that is not available without diagnosis. P.S. She has an evaluation on the 24th which is three days away! We will soon find out.
what about when you realize your child has it, long before you get the doctor's diagnosis. The diagnosis can almost be a relief, to confirm your observations. Plus it can provide more support. It is the realization itself, usually before diagnosis, that is the mind-blower.
Yes...a LOT of parents have told me that is how they reacted. Not only did it confirm their observations, but it was also a vindication for some who had relatives and friends who told them that they were over-reacting to their childs behavior and that nothing was really wrong.
The same happened to me. I know something was wrong with my Andy even days after he was born. He would arch his back, couldn't be consoled and spent a whole year without adequate sleep.
My son was recently diagnosed with Asperger's Syndrome. Honestly, I was devastated. He's only four...and he has this label to carry around with him for the rest of his life. Just because I was heartbroken to hear the news, that doesn't make my child any different to me. He's still the same happy go lucky kid that I and the rest of his family know and love. My concern is all for him and finding the best ways to help HIM. Thank you for this video.
We all react in different ways and everyone's situation is different, too. Fear of disability is so deeply ingrained in our society that it's no wonder that parents of newly diagnosed kids get discouraged. It's their child's life and they may feel responsible, but that doesn't mean they're being unreasonable.Gaining knowledge & understanding takes time.Heck, I'm still learning :)
It seems to me that much of a parents negative reaction comes from the way our society portrays autism. So I can understand someone being upset over a diagnosis of autism. Parents get upset over finding out their kid is all kinds of things(gay, vegetarian, not of their religion ETC). A person has a right to feel how they feel. I will have to ask my mom, but I think she was relieved when I got diagnosed at 23. She finally knew what was going on. I know I was glad to know that I have Aspergers.
The people who should go to hell are the people who condemn autism. It's understandable that a parent would feel sad that their kid has autism, there's no denying it will be rough at times. However it is unforgiveable to make autistics feel unwanted, and unloved, because I myself have autism, and people like me have enough trouble in life without the "normal" people giving us hell! If you love your child the way they are, they will have an easier time facing life's challenges.
My mom was quite shocked when she first heard the diagnosis of 'Severe Autism', then I was rediagnosed with Asperger's around age six or seven. That's when, with the help of speech therapy, I dramatically improved. Maybe my most dramatic improvement had to be in High School, when I could finally walk from class to class (even though my IEP said that I didn't like that). Now, I'm almost entirely mainstream!
I want to say there are other things that are so much more meaningful because of autism. He recently started saying mama again. I still get tears every time I hear. It means so much more. Every kiss melts us. Every smile is a blessing. His beautiful eyes could warm anyone. He has taught us so many things in the two and a half years he has been here. It can be hard to imagine life any other way. I am sure it would be easier in some ways but he has shown us the beauty in ordinary things.
My son was diagnosed Jan. 28th. We knew it was coming. We had been doing early intervention for a year. When we went to the Developmental Ped it was to recieve the offical diagnoses. Still, hearing it from her was probably the hardest thing in my life. I cried the whole way home (2hrs). I still find myself crying alot when I am driving alone. It's the uncertainty that I cry about. And the fact that he misses out on so many things that are just part of being a kid.
I don't think I will EVER be able to forget the day the doctor told me and my wife that our son is autistic. What did I feel? WOW, where to begin; sadness in knowing that my son will probably never be "normal", never play baseball, never go on a date, never fall in love, never understand love. Sadness for seeing all my dreams for my son come crashing down to earth. How the hell is it NOT normal for 99% of the parents out there to feel nothing but sadness?
exactly...when many get the intial diagnosis it is a gloomy time and there is heartbreak for many. For many of us it ends up not being true...but we didnt know that at the time. Our reaction is our business...we certainly dont have to justify it to online strangers.
I and my two friends have been diagnosed with aspergers after 50 yrs of age. Our children are aspies. One of my friend was diagnosed after her sons were. one is a college professor at an Ivy League college and the other just sold his company for over $10mill at the age of 29. So what is your point Phil. Want to discuss it?
Phil... how we work with our children is everyone's business. We do not own our children. Children have rights.
If you knew anything about psychology you would KNOW that anyone who learns they are what they did not know they were, then there is a grieving period .. Grieving takes about a year. How a person handles grief can make or break their future and or their family's future emotionally. I do not agree with you advice. Study grief and you will see people who are grieving need support
Oh please, even I can see that he clearly stated that grieving is okay, as someone who loves their child and wants them to be happy. Also he never stated that 'If you grieve you deserve no support'.
If YOU knew anything psychology you'd know that the grieveing process can last as long as memories, I feel a pang of sadness every time my son blanks me, if this is my grieving process it's been going on for over a year - quick get a straight-jacket I'm not 'textbook' predictable!
Yetti0, Im being sincere when i say that i think you have missed the point of the video...the point is that parents SHOULD be allowed to grieve without feeling that they are a horrible parent or that they dont accept their kid.
I really dont follow your train of thought on any of your comments...its as if you watched a different video.
no problem at all...happens to me all the time too...i watch a video and cant believe what i heard and then go back and am shocked at what was actually said. Not saying that this is the case with you and this video, im just saying that it is easy to 'not get' a video the first time around.
The problem I feel is the presentation. I agree with a lot of whta you say and then you throw in a concept in a way that does not work with what you are stating... it could be the presentation. I have watched it 5x. I will try to get on the same page... but no promises... some things I do not agree with how you are presenting it.
You took the words right out of my mouth, too many people on here pass judgement on others they know squat about. We're still waiting for Dominic's diagnosis but I've known he is autistic for just over a year. Without diagnosis we cannot get complete support from local schools so I guess in a strange twist I'm looking forward to his diagnosis. At least then we get him special help to communicate better.
I am embracing dd's dx AS. thrilled to FINALLY have a explaination for the odd issues/such the last 10 ys.I smile about it and that is misunderstood for joy,it's relief and a plan of action. inability to process feedback and lack of empathy are hardest on the rest of us. She is frustrated at how easy life isfor others but simple things are hard for her.
to any one who wants to judge my parenting I ask them to spend two days with me
My initial reaction to my oldest being diagnosed as an Aspie was disbelief. I had already done research on autism, but not asperger's. My only question - what now?
With my youngest son, when he was diagnosed as PDD-NOS, my reaction was more 'Duh!' than anything because he followed his brother's footsteps almost exactly!
ive come a long way since then but still strive to give zoe all the skills and benefits that i feel will help her later. i wish i could wait and ask her what methods(ie therapies and treatments) she finds imp.but for now i will go with my gut and be her voice.
i sat on the computer for two days reading everything i could find on autism...i told no one about my suspicions..at first i read scientific journals then i got every auto-biographical work i could find written by an autistic.wanting more of an insiders view
one day i was watching zoe around the corner where she couldnt see me and i counted her spinning her self around 68 times in a row without getting dizzy..all of the sudden the room started closing in on me and i couldnt breathe.
Furthermore, my mom conditioned me to accept others. I had two friends and a Indian boy came to my backyard and the oldest boy drove him off. My mom found him kicking our garage saying, "Bad house!" She took him to the backyard and said, "You will all accept him into your group and play with him." We did and he was my best friend till I moved away.
The key thing to learn is that if others don't accept your child or make fun of him, then it is your job to condition that person (to learn) to accept.
The only thing I want for Ruby is for her to talk right now and be conversational. It was a relief to finally know for sure what was going on with our baby girl. She is still Ruby after all, the diagnosis doesn't change our love for her.
We are currently researching the gfcf diet and enzymes, hopefully she can start next week. Your videos are really helping us. Thanks
now in personal terms that means focus on reinforcing attempts.
Koegel, R. L., O'Dell, M. C., Dunlap, G. (1988). Producing speech use in nonverbal autistic children by reinforcing attempts. Journal of Autism and Developmental Disorders, 18, 525-538.
Ruby was just diagnosed last week with moderate autism. My husband and I were relieved to hear the diagnosis. For the past year we have been back and forth with wondering what is wrong with our child. I did my crying a year ago when my parents confronted me and told me that something wasn't right with Ruby. I have spent the past year researching different things including autism so I knew that she could be helped and would live a normal life.
Hi! yeah, ive heard that a lot, parents understand something is wrong way in advance and by the time their child is actually diagnosed they already have a feeling. it would be less shocking and less traumatic that way. thanks for the post!!!
However, 7 yrs. later, he is a happy, self-confident 10 yr. old boy! I believe in training him to handle the real world AND making accomodations for him right now. Ex: He's in a special autism class, because I know that he couldn't handle the bullies, noise and confusion out there. He has friends in the class, as well as among the "typical" kids at school. I think every child (and every parent) is unique, and we need to accept that.
His perfectionism made him fall apart if he made the tiniest mistake. (I did NOT make him that way.) He was always worried. He was verbal, so he'd express how he felt. I knew that he was suffering because of these things. I was afraid for his future.
As for dividing all "symptoms of autism" into bio-medical or genetic issues, I find that incomplete. My son was terrified of so many things before he was diagnosed, especially certain sounds. That was due to his super-sonic hearing, which is biological. But the reaction itself was neither bio-medical or genetic. And it wasn't a reaction to how he was treated, either.
yeah thats a real good point. Are sensory issues caused by a medical issue (diet, vitamin deficiency, or other) or are they genetic (i think an element of them are) or are they neither and like you said 'biological'.
Stuff like being bothered by certain textures (esp. food and clothes) and sounds are real common with our kids. Have you worked on his sensitivities?
Oops! Still writing while you responded. Yes, I've worked on his sensitivities. Has it worked? I don't know! I think he just out-grew some of them (especially noises). He's still picky about what he'll eat or wear. As long as he eats a decent diet and doesn't faint from wearing long slvs, no matter how hot, I just say, "Oh well, it won't really hurt him." (He get his 5 veggies/fruits, etc., but he eats the same stuff all the time. I call it the "show dog diet," healthy but monotonous!)
I will confess in all honesty that I'm concerned about his willingness to do homework as he gets older and I see a lot of future conflict and frustration. I never did homework as a kid, until 8th grade. Nowadays, they seem to give homework to very young children. I also constantly worry about the bullying and teasing because its already started.
dont worry about the bullying...teach him a Right Hook follows a stiff Left Jab. I teach Jake that if someone calls you a mean name you punch them in the face. seriously. They are at a young age where that sort of thing will discourage a bully from doing it again. I view it as intervention for the bully...its him im thinking of. ;)
Finding out that my son had autism WAS a positive thing for us. It gave us the ability to help and understand him. If the doctors had come back to me and said, "we just don't know. we'll see what happens as he grows," that would have been really hard for me. 90% of the frustration and sadness I had in dealing with my son went away when I realized that he has autism.
but the key word here is "as opposed". For many parents they feel that their children are fine with maybe just a delay or something that is quickly and easily corrected but find out their child has a real condition that is not so easy to deal with. Would you rather of heard that your child has autism or that your child will be 100% fine in two weeks he just needed extra vit. c?
Well, he's been consistently chase for the entirety of his short little life, if the doctors told me that vitamin c would make him act like NT kids, I would think he was crazy.
I guess that because my son doesn't have any medical issues, my outlook on autism is different than some others.
but my point is that the 'issues' that prompted you to take Chase to the Dr. in the first place were a concern. If the Dr. said its a simple lack of vit. C im sure you would have prefered that over 'its autism'.
Not saying that autism devestated you at all, just saying its not like winning the lottery.
But some people it does devestate and they should never be made to feel that this was the 'improper' way to respond and that they are unaccepting of their child or selfish for responding that way.
"they should never be made to feel that this was the 'improper' way to respond and that they are unaccepting of their child or selfish for responding that way."
as i said earlier i was just trying to seperate parents who knew something was wrong and found direction with the diagnosis from the parents like myself who it came out of left field. i knew there was a speech delay but had no idea of all the other deficits (and they were deficits).
and what i mean by deficits is lacking major developmental skills. jake was very delayed in many areas and it was a lot of hard work for me to teach him those skills.
I believe it comes as a surprise to many parents because they themselves have a lot of spectrum in them. Many many parents have what's called "The Broader Autism Phenotype".
i agree, but that wasnt the case with me. i just didnt understand just how many skills jake didnt have (referencing, eye contact, emotion sharing, etc) and so i just saw a speech delay. when i found out it was autism and the thought that he may never develop true emotion sharing it was devestating. Thats why i resent people telling me i was devestated because he 'wasnt the child i had hoped for'. Its not the case at all w/me.
many parents are not devestated because they had a vision of a child and they now see that vision wont come true. That is such an unfair characterization that many make. many of us were devestated because we knew there was a real possiblity our children would never experience many of the things that we hold dear.
"many of us were devestated because we knew there was a real possiblity our children would never experience many of the things that we hold dear."
I never experienced this, perhaps because I don't hold anything "dear". I always expected him to be the way he is, except I didn't know it was autism, because he was me.
did you ever expect him to talk? to point? to have a friend? to walk along side of you? to notice when you walked in the room? to open a birthday present? to laugh at a joke? to tell you his opinion?
I think like most parents, I was concerned with the lack of pointing. I always expected him to talk. Walk along side me? No, I prefer he walks in front most of the time. Open a present, no, not really. It implies a programmed response. I did expect him to have a sense of humor which he does, but all people do.
Oh, I'm sure as he gets older, I'll have plenty of arguments with him as opinions don't seem to be in short supply in my family, lol. He already says what he prefers or lets me know in other ways, lol.
Let me expand on the talking part. Jr. does talk, although most non autistic people would/do find it "unusual" or a professional may call much of it creative rote. Because he prefers to talk, we help with this by providing a therapist. If he wanted to use PECS, ASL, FC, I would provide a teacher for that as well. PECS, ASL and FC would frustrate him I think whereas another kid would find it natural.
Well, its the wife that likes to wrap presents. I'd rather hide them and make a game out of finding them. At a year, he didn't have the motor ability to unwrap. At two he was better. At three he tore into them and at 4 he couldn't wait to unwrap.
Lack of emotion is one of the most glaring "frauds" of the DSM 1-IV. I've never known of an autistic that didn't have the full range of emotions as any other human being. Autistic people have emotions, always have, its the neurotypicals who made up the DSM criteria that were "disabled" in understanding how to recognize it.
lack of emotion and 'emotion sharing' are two totally different things. the fact that emotions will be shared implies that both parties have emotions. My son had emotions he just didnt view sharing those emotions as being important. but emotion sharing is the cornerstone of friendship.
"My son had emotions he just didnt view sharing those emotions as being important."
Many years from now you will/may look back with more clarity and hindsight and realize that this perception was wrong. It may not seem like that today, but as Jake grows, you will/may have a moment of "clarity". Its at that point that I want you to make a toast to me, lol, for being the first to tell you.
no i actually know what im talking about for once! he did have emotions but he didnt reference others to see their emotional state and didnt read non verbal cues so he didnt have the tools to share his world with me.
"he didnt reference others to see their emotional state and didnt read non verbal cues..."
I've heard something similar from my wife about me. She's constantly interpreting for me in many situations. Ever have someone ask you "what are you thinking" when you weren't thinking anything and it bothered you that they assumed you were bothered or upset?
Phil, no offense, but would your parents say they won the lottery? It isn't about winning lotteries, as you know. That's not a good analogy.
Now, the point of your video is that you shouldn't question how someone feels when they get the diagnosis. But, isn't that what your doing here when someone says something positive (well wouldn't you have wanted a,b,c?)
yeah youre sort of right. but i am also clarifying what i meant when i said "got the diagnosis". some people knew ahead of time that something was wrong and for them it was a relief. they dont need to justify that feeling. for some it was heartbreaking. but i was just trying to clarify to drmaier what i was getting at.
No, I'm saying it's better than winning the lottery. Just as I said, Chase is different from what I imagined my child would be. But I'm by no means dissapointed by him.
I don't see my child "suffering" from autism. There are things that are hard for him to deal with, and he doesn't enjoy things that other children do a lot of the time. However, I am positive that he's a happy boy.
When I became pregnant, I thought for sure I would give birth to a tiny, brown eyed, little girl. Never ever did I imagine I would have this bouncy, blue eyed little guy.
He is not what I expected. Chase is not something I could have dreamed up. He's better than anything I could have imagined.
When i was preg, I never thought, "I'm going to have a NT child," or "I'm going to have a disabled child."
And when I saw him, I knew he was better than anything I wanted him to be.
I think a lot of the disappointment a parent feels comes from the doctors diagnosis. The doctor rarely presents the news with a smile on their face, and they'll be ready to point out all the bad without saying anything about the potential of autism to go above and beyond non-autism.
One famous doctor called Tony Attwood does things differently. When he breaks the news, he says "congratulations, you have asperger syndrome".
I can put you in contact with my mother who was happy and relieved to find out about me being on the autistic spectrum as it finally explained what she had had to learn already over 32 years.
Family life for us was a horrible experience when I was growing up, and I had many of the problems autistic spectrum kids today have, but we managed to get through them and the diagnosis was a benefit.
i honestly think it is very different if the child in question is an adult though. The parent no longer feels the need to provide a life for that child. Every parent should feel the need to provide a life for their children and you feel helpless when they have a dev. delay.
I can speak only for myself, but as a child, I heard the news that I was going to grow up and become a father and I felt disgusted but my mother insisted. Today I feel no differently but that the time spent worrying about this was wasted and probably better spent pursuing my passions.
Why is it that not having the desire to propogate the species is seen as a bad thing when autism has the potential to alter the lives of billions for the better?
Of course I worry about him & I don't question anyone else's reactions BUT we would not see so much sadness & devastation if more parents like us get the word out that it's not a death sentence!
thanks for your reply JKMM. I do hear that a lot from parents (that they werent devestated becuase they knew something was up for a while). I also feel with the advent of the internet many parents have a better understanding of autism. back in the day they only had the doctors and old library books to rely on. Also many kids who are diagnosed w/autism now are very mild and wouldnt have been diagnosed 20 years ago.
So the definition has changed and it will probably take a while before societies views change with it. Also people understand things better now like the gut/brain connection. My son wouldnt be where he is if it werent for the gfcf diet which i wouldnt have known about 15 years ago. Many people when they refer to autism and how its what youre born with are actually refering to Aspergers Syndrom which is just one form of Autism.
My boy just turned 4 and at this age definitely doesn't fit the criteria for Aspergers. He is a twin, partially vaxed, and never really had a big regressive period. I guess we'll see! Also - we started gf/cf about 2 mos ago. Not noticing much to be honest but we'll stick it out for a few more months.
It's great youre trying the diet and if you are being 100% strict with it and dont see any change then your child may not have food issues. Not every kid does.
pt2 I am very open about my son's dx because he is the light of my life, adorable, sweet, smart, funny - all this while being nonverbal! - & I'm saddened by the videos like autism speaks or the one put out by TACA that still portray autism as the worst possible thing that could happen. My son is not "my nightmare" & far from the worst thing that could happen to me.
Personally, I was not devastated because the dx came almost a year after I started to notice things and at least 6 months after I was already sure it was autism. I agree with christschool that some people's reactions are due to society's ideas of autistic people because it is still fairly recent that people are learning that not all autistic kids will spend the rest of their lives staring into a corner in an institution.
but you have the right to desire your kid to enjoy the same things you enjoyed as a kid. that is nature. all parents hope to take their children to the same places they enjoyed as kids and they hope they will like it, if they dont like it the parent has every right to be dissapointed. so parents have the right to be disappointed that their children have autism...not disappointed in the child. but they should get over it asap, easier said than done for some though.
i agree with you about society never changing and i do agree that the medical side of autism is a disability that should be overcome but the genetic side i feel is not a disability nor a superiority.
but that date to the prom may be a big deal to that parent. THAT parent may have had a GREAT prom night and out of pure love had hoped that their child would also have a great prom night. If you went to a park by yourself and had a great time....cont....
cont...you may go home and excitedly tell your husband to get the kids cause you are all going to the park. You are hoping they also will have a great time and you do all of this out of love. A parents dissapointment often times is a reflection of their love for their child and not an act of unacceptance. So i disagree with the term "Self Pity" to describe a parents dissapointment. it's often times "Selfless Love" that makes one disappointed.
Anyway it's been fun debating this with you, but it's a beautiful saturday and my kids need some time to enjoy one of our last weekend without snow and subzero temps!! You have a great weekend and give Jake a BIG HUG for me!!!
No I am choosing to conform instead by homeschooling. If you teach your child that they must change to suit others ideals are you truly raising a child who will stand up to bullies?? I think you are teaching him to roll over and take it.
Don't get me wrong I believe giving your child tools is a good thing. I just don't think any of us knows what they will do with them after they grow up. I do however have a problem with people using meathods that are dangerous with thier child, or extremely stressful for the child or that try to change who that child is FUDEMENTALLY
How ould you feel if Jake came to you and said " Dad I just don't think I can be happy going to college?" would you accept his choice or would you let your own feelings of diassapointment determine your response. My Kids happiness is all that matters to me, whatever it means for them. And yes my 22 mth old is even capable of alerting me when he is unhappy.
If he 'just wouldnt be happy' i may not support him. I know what a college education can do and i know that he doesnt realize that 20 years from now he will be kicking himself in the ass for not going and come back to me and say "how could you let me make such a major decision about life at such a young age" what am i suppose to say? "I just wanted you to be happy" my kid would respond "what kind of parenting was that???"
Once again those are you preception, I know there are alot of very happy successful people that have never spent a day in college. How do you Jake won't be choosing a better path. My kids can come back to me in years and say I decided to go and I will do everything in my power to help them. People change, feelings change and I will support them through it all.
You should meet my hubby, he talks to people forever regardless of there intrest.Don't say how's it going cause you will be there for an hour, he even continues to talk as people are walking away!
and dont you feel that when he was a child if he were taught social skills that it would have been a positive thing in his life? btw, my comment about talking to someone and knowing they are autistic was in reply to a christschool comment and not you! lol, im not THAT rude :)
HA! no, i meant that this one guy does...but we are working and we are all trying to get work done and suddenly he walks away from us to talk to someone about the beatles (hes 52 yrs old) and they could care less coz theyre busting their butts trying to get done. we are all irritated coz we cant work without him. so my point is that we dont cut him a break and i dont expect anyone to cut jake a break.
Phil, How do you know what any other person will need to enjoy life?? I am a very happy person, But what causes my happyness would obviously fall very short of what you expect to cause Jake's. You can't impose your views of what happiness, fullfillment and meaning is onto your child.
Thats what parenting is. You try to provide your child with the life you think they will thrive and be happy in and as you go along you make adjustments for each child and their unique personality.
Dont you want whats best for your kid? can a three year old tell you whats best for them? no. so you must use your judgement. Again, thats what parenting is. Is it wrong to want and encourage your kid to go to college? by your comments i would think you would answer yes to that question.
Yes I want whats best foe THEM. I accept that that may be very different from what I may want for them, so I try not to limit them by adding my own criteria for happiness. I for one would never be happy in the workforce, maybe they will be. I am happy being a parent, maybe they won't want kids. I would love to have went to collage, maybe they won't want to
But they dont know whats best for them!!! A five year old kid is not going to tell me whats best for them to eat or what time is best for bed. I am the parent and i will decide those things until they show they can make responsable decisions or are 18 years old. whichever comes first. I have to decide what will bring them happiness and work to provide that to them making adjustments along the way to accomodate their individual personalities...also known as parenting.
If my daughter at 11 years old wanted to wear an outfit that was far too revealing and i said 'no' and she said that it makes her happy dressing like that would i let her??? Hell no! I am her parent and i will give her values and guidance that one day she may understand and appreciate.
I'm not argueing that as a parent you have to protect you child from themselves at times. I am arguing that saying your child needs to be made to adjust do to your nothion of what will make them happy 10 years from know is wrong.I know my child would have issues in school, am I trying to force him to conform ??
So if your child came to you at ten years old and said they arent going to school anymore cause they arent happy would you be fine with that? or would you impose your views that they should continue?
I KNOW how it was as achild to have your parents always being dissapointed in you. I tried to change, to not be different, I tried to earn thier love and you know what I will never be good enough for them because I am "different". I know the damage this causes!!
Every parent wether there kids are Nt or not have bad moments with thier kids, The problem is when you choose to focus all your energy on the negative instead of dwelling on the good. I have seen videos of parents who "hate autism" have you ever heard the way they talk about there child, have you seen the way they act towards that child when they are acting autistic??? You can't tell me that does not effect a child!!
I just want to add that I second what Mom and Christschool have said here. Phil, I seriously doubt that anyone is questioning a parents right to mourn. I believe are stance is like with any loss, you mourn breifly, you accept it and you move on.
I am all for giving a kid confidence. But that doesnt mean that when a parent first hears that their child is autistic and is heartbroken that they somehow are 'wrong' for feeling this way. Thats what the videos about. A parent can grieve anyway they want to and shouldnt feel ashamed for expressing that grief.
i was very upset/heartbroken/distraught when i found out jake was autistic. I find it offensive that people tell me that this reaction is an act of unacceptance of my child. My reaction is normal and its my business and i refuse to let anybody tell me that my reaction reflects anything negative. To tell me i was upset because my child isnt going to be the child i had hoped they would be is total bull. .
I was upset at the possible scenerios that may have been his future and ARE many kids future with autism. Many people get upset when parents mention that some kids with autisms futures arent that bright. Thats reality. And if a parent knows this and is upset that it might be their kids future...well, i call that a perfectly normal reaction.
many parents are painting such a rosey picture of autism that it is misleading parents into thinking that they can just relax and their kid will be just fine. Thats not true, many of these kids need A LOT of hard work to give them the skills they are gonna need to be able to enjoy life. Having an autistic child is not like hitting the lottery. Its not and when a parent first gets the diagnosis there is nothing wrong w/them if they react w/heartbreak.
If you don't want to get bullied or picked on then you change. Thats society. Always has been always will be. Even if 'change' means lifting weights and learning how to fight. But its a bit naive to think you will overcome your child being bullied by changing society. Bullies pick on others who are different and powerless. I have a feeling that there will be bullies on earth long after we have all come and gone.
i agree with all that you say...and you should not be made to feel that you somehow do not accept your child for who they are because you worry about their future more so than you might for an NT child (of which i have two). And if it hurt someone to find out their child is autistic because they may face some of what you outlined i feel they should not be made to feel wrong for that heartbreak or hurt.
Phil, the feelings many parents are talking about here (i.e. sad, worried they will be picked on, worried for their safety when they aren't around etc) are things they should worry more about. The world isn't a safe place for autistic people or others that are different. Help change the world, confront prejudice, work to remove barriers, help create accomodation.
I agree that the world should change but first you have to devote yourself to helping the child overcome many of the difficulties often associated with autism (skills, biomed, etc). You will never change the playground bully because that is just life...there will always be bullies and all the effort in the world will never sink in to a ten year old bullies mind.
There will always be jerk bosses and there will always be insecure individuals who will prey on those whom they see as weaker than them. There will always be con artist who take advantage of the trusting. My job is to get Jake ready for the real world more so than trying to bring into reality a StarTrek world. There will always be hate and prejudice...i cant change that, but i can give my kids the self esteem and skills and health to survive and thrive in that world.
but you can change the autistic child. I did with Jakes diet and everytime you give a child a new skill you change them. You can change someone by giving them a new outlook or perspective. You cant change genetics, but you can change them for the better..."CHANGE" has different meanings though and we may be talking about two different things.
If a person is an pessimist you may not be able to 'change' that, but you can show them different views and ways of thinking where they wouldnt let their pessimism be a stumbling block in their lives. so in a sense you changed their outlook which changed them, but you didnt change who they are...semantics :)
Teaching a child how to use language (written, pictures, verbal etc.) isn't change to me. Its parenting and teaching. Its not parenting and teaching though if its done through aversive means or without consent. I think we agree on this. Perhaps we can change the bully or his home environment so he won't feel the need to hurt others. That would improve autistic peoples lives far more than a diet because it will help all autistic people.
The world will never be full of good parents or people. There will always be bullies but we should always try to make the world a better place for all. I really believe that. Martin Luther King Jr is a hero of mine. But the reality is that hate and ignorance will never be eliminated. So i will do what i can to give my children the skills they need to thrive in a world that can sometimes be frustratingly unfair.
but if diet and b12 give that child the ability to tell the bully off and give him a nice left hook to the head...Speak softly and carry a big stick...
i wish it were as easy to say live and let live... i don't give a damn if it's a fellow parent with autism or not... don't tell me what to do with my child... or try for my child...it's none of anyone's business...
Well said Liamjakesmum. I think you portray how many parents feel/felt. Think about how people must of felt before the internet...they had to read up on it from books in the library that were 20 years outdated. Thanks for taking time to comment!
cont. I still think about 'it' alot and i worry about what the future holds for Jake and how he will be treated. I know how he should be treated but i have the benefit of having researched autism because it affects us directly.
cont. I was devastated that this was how life was going to be for my son and, at the risk of opening myself up to criticism, for myself. Now, 3 months after dx, i realise that my son is not going to regress or become emotionally distant overnight and i love both my boys more than ever and it is certainly no hardship to do anything for either of them. I have also learnt that you dont really need words to communicate.
Thank you for your input! I have to leave in about an hour to take my 2 1/2 year old daughter to be evaluated by an developmental pediatrician for Autism. I am so nervouse and scared and relieved at the same time. I really do appreciate your positive outlook on recieving the offical diagnoises of Autism. I will keep this in mind when the doctor gives me the news today!
Valene615 1 month ago
My grandson was diagnosed at the age of 2 although I suspected it for about a year before that. My daughter of course was not willing to accept it. She said there is nothing wrong with him, he will catch up. That was a year ago and he isnt 'catching up' he is getting worse. My reaction was one of worry. I worry about his future. Another was frustration. Trying to find the right help for him is very hard. Nothing seems like it is good enough. By the way, his score on the CARS test was 47
bjstur44 9 months ago
Phil did the doctors give you any positives when your son was diagnosed? We had a team of professionals that evaluated him and I was told that I needed to be prepared because I most likely wont be able to care for him by age 7. They also told me to stay away from the internet for it has all kinds of false info. The internet is the reason my son is where he is today. I mourned for three days and then started fighting like hell. Thanks for this video!
KimberlyMahurin 1 year ago
i am so glad you made these videos. you are a great parent. thanks for the support and help educating other parents like myself.
kristyeddy84 1 year ago
AMEN !!! Good Vid, brother !
BrokenTengu99 2 years ago
i knew something was wrong long before she was diagnosed. my family wouldnt hear me out till i finally brought up her symptoms to our family doctor. after being evalutated, on her 3rd birthday, they finally came to know the truth i had known all along. I it hurts. I felt sad, i relized that she was still my little girl. nothing had changed. and whatever or however i could help and support her i would. though she is delayed in some instances, she is brillant in others. love and support forever.
lilpococonfusion 2 years ago
i knew my child had autism way before i could ever get any doctor to diagnosis him
deleahmarie 2 years ago
When I learned that my son has autism the only thing that I could is to accept my fate along with his. I have worked enourmously to make sure that he receives all of the services and therapies that I could conceivably get for him. While he still has issues, he has progressed. I can tell you that my constant advocacy for him have pissed a few people to the point that some may be burning black candles to see my untimely death, but it all have been worth it!
waarce 2 years ago
Comment removed
meggie416 3 years ago
but diagnosis, either way, is of paramount importance for the individual it most concerns, the possible autistic, and should not ever be impeded by anybody
ghodium 3 years ago
i agree... speaking as one diagnosed very recently (i'm 45) with aspergers syndrome i'd say it's the stigma and ignorance surrounding aspergers syndrome that makes it difficult for parents to accept or digest... if it were seen for what it actually is then nonacceptance wouldn't be much different to racism... except of course that 2 germans, for example, couldn't give birth to a chinese kid... aspergers is like a different culture... that's how it feels to me: a different culture to my family
ghodium 3 years ago
I agree with you very much asma74 Becuase I have a 2 year old named mikaela , who i know she is autistic and almost everyone i know agrees and i think it will certainly be a relief to hear a doctor tell me what i already know because then we are on our way to recovery through treatment and therapy that is not available without diagnosis. P.S. She has an evaluation on the 24th which is three days away! We will soon find out.
linziakaava 3 years ago
Goodluck!!!!
PhilCommander2 3 years ago
what about when you realize your child has it, long before you get the doctor's diagnosis. The diagnosis can almost be a relief, to confirm your observations. Plus it can provide more support. It is the realization itself, usually before diagnosis, that is the mind-blower.
Asma74 3 years ago
Yes...a LOT of parents have told me that is how they reacted. Not only did it confirm their observations, but it was also a vindication for some who had relatives and friends who told them that they were over-reacting to their childs behavior and that nothing was really wrong.
PhilCommander2 3 years ago
The same happened to me. I know something was wrong with my Andy even days after he was born. He would arch his back, couldn't be consoled and spent a whole year without adequate sleep.
waarce 2 years ago
featured again :-)
StarMagick 3 years ago
My son was recently diagnosed with Asperger's Syndrome. Honestly, I was devastated. He's only four...and he has this label to carry around with him for the rest of his life. Just because I was heartbroken to hear the news, that doesn't make my child any different to me. He's still the same happy go lucky kid that I and the rest of his family know and love. My concern is all for him and finding the best ways to help HIM. Thank you for this video.
MindyLee143 4 years ago
thats exactly right...good luck and let me know if i can help you in any way.
take care!
PhilCommander2 4 years ago
We all react in different ways and everyone's situation is different, too. Fear of disability is so deeply ingrained in our society that it's no wonder that parents of newly diagnosed kids get discouraged. It's their child's life and they may feel responsible, but that doesn't mean they're being unreasonable.Gaining knowledge & understanding takes time.Heck, I'm still learning :)
bk696 4 years ago
It seems to me that much of a parents negative reaction comes from the way our society portrays autism. So I can understand someone being upset over a diagnosis of autism. Parents get upset over finding out their kid is all kinds of things(gay, vegetarian, not of their religion ETC). A person has a right to feel how they feel. I will have to ask my mom, but I think she was relieved when I got diagnosed at 23. She finally knew what was going on. I know I was glad to know that I have Aspergers.
purplemutantas 4 years ago
The people who should go to hell are the people who condemn autism. It's understandable that a parent would feel sad that their kid has autism, there's no denying it will be rough at times. However it is unforgiveable to make autistics feel unwanted, and unloved, because I myself have autism, and people like me have enough trouble in life without the "normal" people giving us hell! If you love your child the way they are, they will have an easier time facing life's challenges.
LarryB1984 4 years ago
My mom was quite shocked when she first heard the diagnosis of 'Severe Autism', then I was rediagnosed with Asperger's around age six or seven. That's when, with the help of speech therapy, I dramatically improved. Maybe my most dramatic improvement had to be in High School, when I could finally walk from class to class (even though my IEP said that I didn't like that). Now, I'm almost entirely mainstream!
CoolNASCARGuy 4 years ago
I want to say there are other things that are so much more meaningful because of autism. He recently started saying mama again. I still get tears every time I hear. It means so much more. Every kiss melts us. Every smile is a blessing. His beautiful eyes could warm anyone. He has taught us so many things in the two and a half years he has been here. It can be hard to imagine life any other way. I am sure it would be easier in some ways but he has shown us the beauty in ordinary things.
jmantonya 4 years ago
i agree and there was a moment when i had that epiphany that i will never forget.
PhilCommander2 4 years ago
My son was diagnosed Jan. 28th. We knew it was coming. We had been doing early intervention for a year. When we went to the Developmental Ped it was to recieve the offical diagnoses. Still, hearing it from her was probably the hardest thing in my life. I cried the whole way home (2hrs). I still find myself crying alot when I am driving alone. It's the uncertainty that I cry about. And the fact that he misses out on so many things that are just part of being a kid.
jmantonya 4 years ago
I'm sorry, your child has autism...
I don't think I will EVER be able to forget the day the doctor told me and my wife that our son is autistic. What did I feel? WOW, where to begin; sadness in knowing that my son will probably never be "normal", never play baseball, never go on a date, never fall in love, never understand love. Sadness for seeing all my dreams for my son come crashing down to earth. How the hell is it NOT normal for 99% of the parents out there to feel nothing but sadness?
ral72 4 years ago
exactly...when many get the intial diagnosis it is a gloomy time and there is heartbreak for many. For many of us it ends up not being true...but we didnt know that at the time. Our reaction is our business...we certainly dont have to justify it to online strangers.
PhilCommander2 4 years ago
Clear enough for me to understand, especially as I read the video description fully before watching.
polkadotpants 4 years ago
I and my two friends have been diagnosed with aspergers after 50 yrs of age. Our children are aspies. One of my friend was diagnosed after her sons were. one is a college professor at an Ivy League college and the other just sold his company for over $10mill at the age of 29. So what is your point Phil. Want to discuss it?
Yetti0 4 years ago
Phil... how we work with our children is everyone's business. We do not own our children. Children have rights.
If you knew anything about psychology you would KNOW that anyone who learns they are what they did not know they were, then there is a grieving period .. Grieving takes about a year. How a person handles grief can make or break their future and or their family's future emotionally. I do not agree with you advice. Study grief and you will see people who are grieving need support
Yetti0 4 years ago
Oh please, even I can see that he clearly stated that grieving is okay, as someone who loves their child and wants them to be happy. Also he never stated that 'If you grieve you deserve no support'.
If YOU knew anything psychology you'd know that the grieveing process can last as long as memories, I feel a pang of sadness every time my son blanks me, if this is my grieving process it's been going on for over a year - quick get a straight-jacket I'm not 'textbook' predictable!
polkadotpants 4 years ago
No he does not clearly state it.
Yetti0 4 years ago
Yetti0, Im being sincere when i say that i think you have missed the point of the video...the point is that parents SHOULD be allowed to grieve without feeling that they are a horrible parent or that they dont accept their kid.
I really dont follow your train of thought on any of your comments...its as if you watched a different video.
PhilCommander2 4 years ago
Well I agree about the grieving. I appologize if I misunderstood. I am having a difficult time understanding your videos..
Yetti0 4 years ago
no problem at all...happens to me all the time too...i watch a video and cant believe what i heard and then go back and am shocked at what was actually said. Not saying that this is the case with you and this video, im just saying that it is easy to 'not get' a video the first time around.
PhilCommander2 4 years ago
The problem I feel is the presentation. I agree with a lot of whta you say and then you throw in a concept in a way that does not work with what you are stating... it could be the presentation. I have watched it 5x. I will try to get on the same page... but no promises... some things I do not agree with how you are presenting it.
Yetti0 4 years ago
fair enough. My videos are not everybodies cup of tea.
Thanks for watching and commenting though :)
PhilCommander2 4 years ago
Any time. :)
Yetti0 4 years ago
You took the words right out of my mouth, too many people on here pass judgement on others they know squat about. We're still waiting for Dominic's diagnosis but I've known he is autistic for just over a year. Without diagnosis we cannot get complete support from local schools so I guess in a strange twist I'm looking forward to his diagnosis. At least then we get him special help to communicate better.
polkadotpants 4 years ago
philcommander rocks my world lol
StarMagick 4 years ago
PREACH! Your damn right.
Adrenalyn 4 years ago
Thank you, and you are so not alone!!!
ProjectHelpHealChase 4 years ago
I am embracing dd's dx AS. thrilled to FINALLY have a explaination for the odd issues/such the last 10 ys.I smile about it and that is misunderstood for joy,it's relief and a plan of action. inability to process feedback and lack of empathy are hardest on the rest of us. She is frustrated at how easy life isfor others but simple things are hard for her.
to any one who wants to judge my parenting I ask them to spend two days with me
Sparrow1138 4 years ago
My initial reaction to my oldest being diagnosed as an Aspie was disbelief. I had already done research on autism, but not asperger's. My only question - what now?
With my youngest son, when he was diagnosed as PDD-NOS, my reaction was more 'Duh!' than anything because he followed his brother's footsteps almost exactly!
jmpms 4 years ago
I tried to post a video responce - but it didnt work :(
I honestly felt releaf as the diagnosis enabled us to get the eldest into a special school.
But that doesnt make me anymore of a stronger person than others, that was my personaly feeling.
My partner struggled far more, that doesnt make him a weak person.
Emotional responces are personal, its what you do after that counts :)
Happyautism 4 years ago
"Emotional responces are personal, its what you do after that counts :)"
couldnt have said it better!
PhilCommander2 4 years ago
And here is my reaction to the diagnosis i got for our second son:
Releaf again, but also a little surprised that he may be on the high functioning side, (although this isnt an exact science as we all know)
Happyautism 4 years ago
ive come a long way since then but still strive to give zoe all the skills and benefits that i feel will help her later. i wish i could wait and ask her what methods(ie therapies and treatments) she finds imp.but for now i will go with my gut and be her voice.
sageyrudman 4 years ago
i felt like i was being strangled and could not catch my breath. i ran over to the computer and typed in the question"my 2 year old spins around
over and over, is this typical?" and googles response was 1000s of pages like "autism and your child"...."warning signs of autism"etc. etc.
sageyrudman 4 years ago
i sat on the computer for two days reading everything i could find on autism...i told no one about my suspicions..at first i read scientific journals then i got every auto-biographical work i could find written by an autistic.wanting more of an insiders view
sageyrudman 4 years ago
What my mom taught me: "You can either learn it now and use it later or you can learn it later when it is too late to use it."
1st grade for not doing my homework; she made the teacher give me all my missed assignments, but get 0% anyway for being late.
ABAisSCIENCE 4 years ago
one day i was watching zoe around the corner where she couldnt see me and i counted her spinning her self around 68 times in a row without getting dizzy..all of the sudden the room started closing in on me and i couldnt breathe.
sageyrudman 4 years ago
Furthermore, my mom conditioned me to accept others. I had two friends and a Indian boy came to my backyard and the oldest boy drove him off. My mom found him kicking our garage saying, "Bad house!" She took him to the backyard and said, "You will all accept him into your group and play with him." We did and he was my best friend till I moved away.
ABAisSCIENCE 4 years ago
I want to say one thing to you. YOUR RIGHT!
The key thing to learn is that if others don't accept your child or make fun of him, then it is your job to condition that person (to learn) to accept.
REMEMBER ACCEPTANCE AND TEACH AREN'T OPPOSITES
ABAisSCIENCE 4 years ago
The only thing I want for Ruby is for her to talk right now and be conversational. It was a relief to finally know for sure what was going on with our baby girl. She is still Ruby after all, the diagnosis doesn't change our love for her.
We are currently researching the gfcf diet and enzymes, hopefully she can start next week. Your videos are really helping us. Thanks
Sassifrassilassi 4 years ago
THINK CONDITIONING
now in personal terms that means focus on reinforcing attempts.
Koegel, R. L., O'Dell, M. C., Dunlap, G. (1988). Producing speech use in nonverbal autistic children by reinforcing attempts. Journal of Autism and Developmental Disorders, 18, 525-538.
ABAisSCIENCE 4 years ago
Ruby was just diagnosed last week with moderate autism. My husband and I were relieved to hear the diagnosis. For the past year we have been back and forth with wondering what is wrong with our child. I did my crying a year ago when my parents confronted me and told me that something wasn't right with Ruby. I have spent the past year researching different things including autism so I knew that she could be helped and would live a normal life.
Sassifrassilassi 4 years ago
Hi! yeah, ive heard that a lot, parents understand something is wrong way in advance and by the time their child is actually diagnosed they already have a feeling. it would be less shocking and less traumatic that way. thanks for the post!!!
PhilCommander2 4 years ago
However, 7 yrs. later, he is a happy, self-confident 10 yr. old boy! I believe in training him to handle the real world AND making accomodations for him right now. Ex: He's in a special autism class, because I know that he couldn't handle the bullies, noise and confusion out there. He has friends in the class, as well as among the "typical" kids at school. I think every child (and every parent) is unique, and we need to accept that.
whitequeen96 4 years ago
His perfectionism made him fall apart if he made the tiniest mistake. (I did NOT make him that way.) He was always worried. He was verbal, so he'd express how he felt. I knew that he was suffering because of these things. I was afraid for his future.
whitequeen96 4 years ago
Right on, Phil! Well-said, as usual!
As for dividing all "symptoms of autism" into bio-medical or genetic issues, I find that incomplete. My son was terrified of so many things before he was diagnosed, especially certain sounds. That was due to his super-sonic hearing, which is biological. But the reaction itself was neither bio-medical or genetic. And it wasn't a reaction to how he was treated, either.
whitequeen96 4 years ago
yeah thats a real good point. Are sensory issues caused by a medical issue (diet, vitamin deficiency, or other) or are they genetic (i think an element of them are) or are they neither and like you said 'biological'.
Stuff like being bothered by certain textures (esp. food and clothes) and sounds are real common with our kids. Have you worked on his sensitivities?
PhilCommander2 4 years ago
Oops! Still writing while you responded. Yes, I've worked on his sensitivities. Has it worked? I don't know! I think he just out-grew some of them (especially noises). He's still picky about what he'll eat or wear. As long as he eats a decent diet and doesn't faint from wearing long slvs, no matter how hot, I just say, "Oh well, it won't really hurt him." (He get his 5 veggies/fruits, etc., but he eats the same stuff all the time. I call it the "show dog diet," healthy but monotonous!)
whitequeen96 4 years ago
Hey, Phil! I sent you an e-mail. Give me your thoughts.
666sigma 4 years ago
will do 666sigma! gonna do a vid response if thats ok with you (on the Thecommanders channel) let me know if thats cool. Thanks!
PhilCommander2 4 years ago
I'll be looking for it.
666sigma 4 years ago
I will confess in all honesty that I'm concerned about his willingness to do homework as he gets older and I see a lot of future conflict and frustration. I never did homework as a kid, until 8th grade. Nowadays, they seem to give homework to very young children. I also constantly worry about the bullying and teasing because its already started.
christschool 4 years ago
dont worry about the bullying...teach him a Right Hook follows a stiff Left Jab. I teach Jake that if someone calls you a mean name you punch them in the face. seriously. They are at a young age where that sort of thing will discourage a bully from doing it again. I view it as intervention for the bully...its him im thinking of. ;)
PhilCommander2 4 years ago
Phil!!!
drmaier 4 years ago
I'm just thinking of the bully drmaier...I dont want them to grow up to be Jerk Bosses! :)
PhilCommander2 4 years ago
Right, right.
drmaier 4 years ago
In the same vein, I think some parents AND their children would benefit from being told, "let's just see what happens as he grows."
I think for some, the diagnosis helps, and for others - it hinders. I guess it's all a matter of what you expect of a child before it is born.
drmaier 4 years ago
Finding out that my son had autism WAS a positive thing for us. It gave us the ability to help and understand him. If the doctors had come back to me and said, "we just don't know. we'll see what happens as he grows," that would have been really hard for me. 90% of the frustration and sadness I had in dealing with my son went away when I realized that he has autism.
drmaier 4 years ago
I was happy that my son had autism as opposed to some kind of degenerative condition, or something that would continue to be a mystery to us.
drmaier 4 years ago
but the key word here is "as opposed". For many parents they feel that their children are fine with maybe just a delay or something that is quickly and easily corrected but find out their child has a real condition that is not so easy to deal with. Would you rather of heard that your child has autism or that your child will be 100% fine in two weeks he just needed extra vit. c?
PhilCommander2 4 years ago
Well, he's been consistently chase for the entirety of his short little life, if the doctors told me that vitamin c would make him act like NT kids, I would think he was crazy.
I guess that because my son doesn't have any medical issues, my outlook on autism is different than some others.
drmaier 4 years ago
but my point is that the 'issues' that prompted you to take Chase to the Dr. in the first place were a concern. If the Dr. said its a simple lack of vit. C im sure you would have prefered that over 'its autism'.
Not saying that autism devestated you at all, just saying its not like winning the lottery.
PhilCommander2 4 years ago
But some people it does devestate and they should never be made to feel that this was the 'improper' way to respond and that they are unaccepting of their child or selfish for responding that way.
PhilCommander2 4 years ago
"they should never be made to feel that this was the 'improper' way to respond and that they are unaccepting of their child or selfish for responding that way."
How about some reciprocity?
christschool 4 years ago
as i said earlier i was just trying to seperate parents who knew something was wrong and found direction with the diagnosis from the parents like myself who it came out of left field. i knew there was a speech delay but had no idea of all the other deficits (and they were deficits).
PhilCommander2 4 years ago
and what i mean by deficits is lacking major developmental skills. jake was very delayed in many areas and it was a lot of hard work for me to teach him those skills.
PhilCommander2 4 years ago
I believe it comes as a surprise to many parents because they themselves have a lot of spectrum in them. Many many parents have what's called "The Broader Autism Phenotype".
christschool 4 years ago
i agree, but that wasnt the case with me. i just didnt understand just how many skills jake didnt have (referencing, eye contact, emotion sharing, etc) and so i just saw a speech delay. when i found out it was autism and the thought that he may never develop true emotion sharing it was devestating. Thats why i resent people telling me i was devestated because he 'wasnt the child i had hoped for'. Its not the case at all w/me.
PhilCommander2 4 years ago
many parents are not devestated because they had a vision of a child and they now see that vision wont come true. That is such an unfair characterization that many make. many of us were devestated because we knew there was a real possiblity our children would never experience many of the things that we hold dear.
PhilCommander2 4 years ago
but i think that you have always been sensititve to many parents needing to go through various phases of acceptance christschool.
PhilCommander2 4 years ago
"many of us were devestated because we knew there was a real possiblity our children would never experience many of the things that we hold dear."
I never experienced this, perhaps because I don't hold anything "dear". I always expected him to be the way he is, except I didn't know it was autism, because he was me.
christschool 4 years ago
did you ever expect him to talk? to point? to have a friend? to walk along side of you? to notice when you walked in the room? to open a birthday present? to laugh at a joke? to tell you his opinion?
PhilCommander2 4 years ago
I think like most parents, I was concerned with the lack of pointing. I always expected him to talk. Walk along side me? No, I prefer he walks in front most of the time. Open a present, no, not really. It implies a programmed response. I did expect him to have a sense of humor which he does, but all people do.
christschool 4 years ago
Oh, I'm sure as he gets older, I'll have plenty of arguments with him as opinions don't seem to be in short supply in my family, lol. He already says what he prefers or lets me know in other ways, lol.
christschool 4 years ago
Let me expand on the talking part. Jr. does talk, although most non autistic people would/do find it "unusual" or a professional may call much of it creative rote. Because he prefers to talk, we help with this by providing a therapist. If he wanted to use PECS, ASL, FC, I would provide a teacher for that as well. PECS, ASL and FC would frustrate him I think whereas another kid would find it natural.
christschool 4 years ago
well if you didnt expect him to open presents why did you buy them for him at his birthday party? Answer that and stay fashionable.
PhilCommander2 4 years ago
Well, its the wife that likes to wrap presents. I'd rather hide them and make a game out of finding them. At a year, he didn't have the motor ability to unwrap. At two he was better. At three he tore into them and at 4 he couldn't wait to unwrap.
christschool 4 years ago
Lack of emotion is one of the most glaring "frauds" of the DSM 1-IV. I've never known of an autistic that didn't have the full range of emotions as any other human being. Autistic people have emotions, always have, its the neurotypicals who made up the DSM criteria that were "disabled" in understanding how to recognize it.
christschool 4 years ago
lack of emotion and 'emotion sharing' are two totally different things. the fact that emotions will be shared implies that both parties have emotions. My son had emotions he just didnt view sharing those emotions as being important. but emotion sharing is the cornerstone of friendship.
PhilCommander2 4 years ago
"My son had emotions he just didnt view sharing those emotions as being important."
Many years from now you will/may look back with more clarity and hindsight and realize that this perception was wrong. It may not seem like that today, but as Jake grows, you will/may have a moment of "clarity". Its at that point that I want you to make a toast to me, lol, for being the first to tell you.
christschool 4 years ago
no i actually know what im talking about for once! he did have emotions but he didnt reference others to see their emotional state and didnt read non verbal cues so he didnt have the tools to share his world with me.
PhilCommander2 4 years ago
"he didnt reference others to see their emotional state and didnt read non verbal cues..."
I've heard something similar from my wife about me. She's constantly interpreting for me in many situations. Ever have someone ask you "what are you thinking" when you weren't thinking anything and it bothered you that they assumed you were bothered or upset?
christschool 4 years ago
Phil, no offense, but would your parents say they won the lottery? It isn't about winning lotteries, as you know. That's not a good analogy.
Now, the point of your video is that you shouldn't question how someone feels when they get the diagnosis. But, isn't that what your doing here when someone says something positive (well wouldn't you have wanted a,b,c?)
christschool 4 years ago
yeah youre sort of right. but i am also clarifying what i meant when i said "got the diagnosis". some people knew ahead of time that something was wrong and for them it was a relief. they dont need to justify that feeling. for some it was heartbreaking. but i was just trying to clarify to drmaier what i was getting at.
PhilCommander2 4 years ago
No, I'm saying it's better than winning the lottery. Just as I said, Chase is different from what I imagined my child would be. But I'm by no means dissapointed by him.
drmaier 4 years ago
I don't see my child "suffering" from autism. There are things that are hard for him to deal with, and he doesn't enjoy things that other children do a lot of the time. However, I am positive that he's a happy boy.
drmaier 4 years ago
When I became pregnant, I thought for sure I would give birth to a tiny, brown eyed, little girl. Never ever did I imagine I would have this bouncy, blue eyed little guy.
He is not what I expected. Chase is not something I could have dreamed up. He's better than anything I could have imagined.
When i was preg, I never thought, "I'm going to have a NT child," or "I'm going to have a disabled child."
And when I saw him, I knew he was better than anything I wanted him to be.
drmaier 4 years ago
I think a lot of the disappointment a parent feels comes from the doctors diagnosis. The doctor rarely presents the news with a smile on their face, and they'll be ready to point out all the bad without saying anything about the potential of autism to go above and beyond non-autism.
One famous doctor called Tony Attwood does things differently. When he breaks the news, he says "congratulations, you have asperger syndrome".
CreddyEddy 4 years ago
good video Phil :)
TruthUnderYourNose 4 years ago
I can put you in contact with my mother who was happy and relieved to find out about me being on the autistic spectrum as it finally explained what she had had to learn already over 32 years.
Family life for us was a horrible experience when I was growing up, and I had many of the problems autistic spectrum kids today have, but we managed to get through them and the diagnosis was a benefit.
CreddyEddy 4 years ago
i honestly think it is very different if the child in question is an adult though. The parent no longer feels the need to provide a life for that child. Every parent should feel the need to provide a life for their children and you feel helpless when they have a dev. delay.
PhilCommander2 4 years ago
I can speak only for myself, but as a child, I heard the news that I was going to grow up and become a father and I felt disgusted but my mother insisted. Today I feel no differently but that the time spent worrying about this was wasted and probably better spent pursuing my passions.
Why is it that not having the desire to propogate the species is seen as a bad thing when autism has the potential to alter the lives of billions for the better?
CreddyEddy 4 years ago
pt 3 (sorry!)
Of course I worry about him & I don't question anyone else's reactions BUT we would not see so much sadness & devastation if more parents like us get the word out that it's not a death sentence!
jkmm 4 years ago
thanks for your reply JKMM. I do hear that a lot from parents (that they werent devestated becuase they knew something was up for a while). I also feel with the advent of the internet many parents have a better understanding of autism. back in the day they only had the doctors and old library books to rely on. Also many kids who are diagnosed w/autism now are very mild and wouldnt have been diagnosed 20 years ago.
PhilCommander2 4 years ago
So the definition has changed and it will probably take a while before societies views change with it. Also people understand things better now like the gut/brain connection. My son wouldnt be where he is if it werent for the gfcf diet which i wouldnt have known about 15 years ago. Many people when they refer to autism and how its what youre born with are actually refering to Aspergers Syndrom which is just one form of Autism.
PhilCommander2 4 years ago
My boy just turned 4 and at this age definitely doesn't fit the criteria for Aspergers. He is a twin, partially vaxed, and never really had a big regressive period. I guess we'll see! Also - we started gf/cf about 2 mos ago. Not noticing much to be honest but we'll stick it out for a few more months.
jkmm 4 years ago
It's great youre trying the diet and if you are being 100% strict with it and dont see any change then your child may not have food issues. Not every kid does.
PhilCommander2 4 years ago
pt2 I am very open about my son's dx because he is the light of my life, adorable, sweet, smart, funny - all this while being nonverbal! - & I'm saddened by the videos like autism speaks or the one put out by TACA that still portray autism as the worst possible thing that could happen. My son is not "my nightmare" & far from the worst thing that could happen to me.
jkmm 4 years ago
Personally, I was not devastated because the dx came almost a year after I started to notice things and at least 6 months after I was already sure it was autism. I agree with christschool that some people's reactions are due to society's ideas of autistic people because it is still fairly recent that people are learning that not all autistic kids will spend the rest of their lives staring into a corner in an institution.
jkmm 4 years ago
but you have the right to desire your kid to enjoy the same things you enjoyed as a kid. that is nature. all parents hope to take their children to the same places they enjoyed as kids and they hope they will like it, if they dont like it the parent has every right to be dissapointed. so parents have the right to be disappointed that their children have autism...not disappointed in the child. but they should get over it asap, easier said than done for some though.
PhilCommander2 4 years ago
Reality check: Society is never going to treat people with differences the way we wish it would.
P.S. Autism is a DISABILITY! i.e. People with autism are not superior beings!
mikeymou 4 years ago
i agree with you about society never changing and i do agree that the medical side of autism is a disability that should be overcome but the genetic side i feel is not a disability nor a superiority.
PhilCommander2 4 years ago
but that date to the prom may be a big deal to that parent. THAT parent may have had a GREAT prom night and out of pure love had hoped that their child would also have a great prom night. If you went to a park by yourself and had a great time....cont....
PhilCommander2 4 years ago
cont...you may go home and excitedly tell your husband to get the kids cause you are all going to the park. You are hoping they also will have a great time and you do all of this out of love. A parents dissapointment often times is a reflection of their love for their child and not an act of unacceptance. So i disagree with the term "Self Pity" to describe a parents dissapointment. it's often times "Selfless Love" that makes one disappointed.
PhilCommander2 4 years ago
Anyway it's been fun debating this with you, but it's a beautiful saturday and my kids need some time to enjoy one of our last weekend without snow and subzero temps!! You have a great weekend and give Jake a BIG HUG for me!!!
momto2miracles 4 years ago
will do, great day around here too but im gonna watch the phillies get into the playoffs!!!!
PhilCommander2 4 years ago
No I am choosing to conform instead by homeschooling. If you teach your child that they must change to suit others ideals are you truly raising a child who will stand up to bullies?? I think you are teaching him to roll over and take it.
momto2miracles 4 years ago
Please excuse my typing.. I am the worst typer ever, the dyslexia doesn't help either :-)
momto2miracles 4 years ago
Don't get me wrong I believe giving your child tools is a good thing. I just don't think any of us knows what they will do with them after they grow up. I do however have a problem with people using meathods that are dangerous with thier child, or extremely stressful for the child or that try to change who that child is FUDEMENTALLY
momto2miracles 4 years ago
How ould you feel if Jake came to you and said " Dad I just don't think I can be happy going to college?" would you accept his choice or would you let your own feelings of diassapointment determine your response. My Kids happiness is all that matters to me, whatever it means for them. And yes my 22 mth old is even capable of alerting me when he is unhappy.
momto2miracles 4 years ago
If he 'just wouldnt be happy' i may not support him. I know what a college education can do and i know that he doesnt realize that 20 years from now he will be kicking himself in the ass for not going and come back to me and say "how could you let me make such a major decision about life at such a young age" what am i suppose to say? "I just wanted you to be happy" my kid would respond "what kind of parenting was that???"
PhilCommander2 4 years ago
Once again those are you preception, I know there are alot of very happy successful people that have never spent a day in college. How do you Jake won't be choosing a better path. My kids can come back to me in years and say I decided to go and I will do everything in my power to help them. People change, feelings change and I will support them through it all.
momto2miracles 4 years ago
You should meet my hubby, he talks to people forever regardless of there intrest.Don't say how's it going cause you will be there for an hour, he even continues to talk as people are walking away!
momto2miracles 4 years ago
and dont you feel that when he was a child if he were taught social skills that it would have been a positive thing in his life? btw, my comment about talking to someone and knowing they are autistic was in reply to a christschool comment and not you! lol, im not THAT rude :)
PhilCommander2 4 years ago
Congrats on getting the Honor!!! Most disscussed ! YAY!!
momto2miracles 4 years ago
I will take that as a compliment, despite your early post about autitic people getting on your nerves.
momto2miracles 4 years ago
HA! no, i meant that this one guy does...but we are working and we are all trying to get work done and suddenly he walks away from us to talk to someone about the beatles (hes 52 yrs old) and they could care less coz theyre busting their butts trying to get done. we are all irritated coz we cant work without him. so my point is that we dont cut him a break and i dont expect anyone to cut jake a break.
PhilCommander2 4 years ago
Phil, How do you know what any other person will need to enjoy life?? I am a very happy person, But what causes my happyness would obviously fall very short of what you expect to cause Jake's. You can't impose your views of what happiness, fullfillment and meaning is onto your child.
momto2miracles 4 years ago
Thats what parenting is. You try to provide your child with the life you think they will thrive and be happy in and as you go along you make adjustments for each child and their unique personality.
PhilCommander2 4 years ago
Dont you want whats best for your kid? can a three year old tell you whats best for them? no. so you must use your judgement. Again, thats what parenting is. Is it wrong to want and encourage your kid to go to college? by your comments i would think you would answer yes to that question.
PhilCommander2 4 years ago
Yes I want whats best foe THEM. I accept that that may be very different from what I may want for them, so I try not to limit them by adding my own criteria for happiness. I for one would never be happy in the workforce, maybe they will be. I am happy being a parent, maybe they won't want kids. I would love to have went to collage, maybe they won't want to
momto2miracles 4 years ago
But they dont know whats best for them!!! A five year old kid is not going to tell me whats best for them to eat or what time is best for bed. I am the parent and i will decide those things until they show they can make responsable decisions or are 18 years old. whichever comes first. I have to decide what will bring them happiness and work to provide that to them making adjustments along the way to accomodate their individual personalities...also known as parenting.
PhilCommander2 4 years ago
If my daughter at 11 years old wanted to wear an outfit that was far too revealing and i said 'no' and she said that it makes her happy dressing like that would i let her??? Hell no! I am her parent and i will give her values and guidance that one day she may understand and appreciate.
PhilCommander2 4 years ago
Whould you let her get a mohawk and hang out in philly?
jon2xu 4 years ago
I'm not argueing that as a parent you have to protect you child from themselves at times. I am arguing that saying your child needs to be made to adjust do to your nothion of what will make them happy 10 years from know is wrong.I know my child would have issues in school, am I trying to force him to conform ??
momto2miracles 4 years ago
So if your child came to you at ten years old and said they arent going to school anymore cause they arent happy would you be fine with that? or would you impose your views that they should continue?
PhilCommander2 4 years ago
I KNOW how it was as achild to have your parents always being dissapointed in you. I tried to change, to not be different, I tried to earn thier love and you know what I will never be good enough for them because I am "different". I know the damage this causes!!
momto2miracles 4 years ago
Every parent wether there kids are Nt or not have bad moments with thier kids, The problem is when you choose to focus all your energy on the negative instead of dwelling on the good. I have seen videos of parents who "hate autism" have you ever heard the way they talk about there child, have you seen the way they act towards that child when they are acting autistic??? You can't tell me that does not effect a child!!
momto2miracles 4 years ago
I just want to add that I second what Mom and Christschool have said here. Phil, I seriously doubt that anyone is questioning a parents right to mourn. I believe are stance is like with any loss, you mourn breifly, you accept it and you move on.
momto2miracles 4 years ago
I am all for giving a kid confidence. But that doesnt mean that when a parent first hears that their child is autistic and is heartbroken that they somehow are 'wrong' for feeling this way. Thats what the videos about. A parent can grieve anyway they want to and shouldnt feel ashamed for expressing that grief.
PhilCommander2 4 years ago
i was very upset/heartbroken/distraught when i found out jake was autistic. I find it offensive that people tell me that this reaction is an act of unacceptance of my child. My reaction is normal and its my business and i refuse to let anybody tell me that my reaction reflects anything negative. To tell me i was upset because my child isnt going to be the child i had hoped they would be is total bull. .
PhilCommander2 4 years ago
I was upset at the possible scenerios that may have been his future and ARE many kids future with autism. Many people get upset when parents mention that some kids with autisms futures arent that bright. Thats reality. And if a parent knows this and is upset that it might be their kids future...well, i call that a perfectly normal reaction.
PhilCommander2 4 years ago
many parents are painting such a rosey picture of autism that it is misleading parents into thinking that they can just relax and their kid will be just fine. Thats not true, many of these kids need A LOT of hard work to give them the skills they are gonna need to be able to enjoy life. Having an autistic child is not like hitting the lottery. Its not and when a parent first gets the diagnosis there is nothing wrong w/them if they react w/heartbreak.
PhilCommander2 4 years ago
If you don't want to get bullied or picked on then you change. Thats society. Always has been always will be. Even if 'change' means lifting weights and learning how to fight. But its a bit naive to think you will overcome your child being bullied by changing society. Bullies pick on others who are different and powerless. I have a feeling that there will be bullies on earth long after we have all come and gone.
PhilCommander2 4 years ago
I agree.
christschool 4 years ago
i agree with all that you say...and you should not be made to feel that you somehow do not accept your child for who they are because you worry about their future more so than you might for an NT child (of which i have two). And if it hurt someone to find out their child is autistic because they may face some of what you outlined i feel they should not be made to feel wrong for that heartbreak or hurt.
PhilCommander2 4 years ago
Phil, the feelings many parents are talking about here (i.e. sad, worried they will be picked on, worried for their safety when they aren't around etc) are things they should worry more about. The world isn't a safe place for autistic people or others that are different. Help change the world, confront prejudice, work to remove barriers, help create accomodation.
christschool 4 years ago
I agree that the world should change but first you have to devote yourself to helping the child overcome many of the difficulties often associated with autism (skills, biomed, etc). You will never change the playground bully because that is just life...there will always be bullies and all the effort in the world will never sink in to a ten year old bullies mind.
PhilCommander2 4 years ago
There will always be jerk bosses and there will always be insecure individuals who will prey on those whom they see as weaker than them. There will always be con artist who take advantage of the trusting. My job is to get Jake ready for the real world more so than trying to bring into reality a StarTrek world. There will always be hate and prejudice...i cant change that, but i can give my kids the self esteem and skills and health to survive and thrive in that world.
PhilCommander2 4 years ago
"never change the playground bully", think about that statement and subtitute autistic, but strike the last sentence about sinking in.
christschool 4 years ago
but you can change the autistic child. I did with Jakes diet and everytime you give a child a new skill you change them. You can change someone by giving them a new outlook or perspective. You cant change genetics, but you can change them for the better..."CHANGE" has different meanings though and we may be talking about two different things.
PhilCommander2 4 years ago
If a person is an pessimist you may not be able to 'change' that, but you can show them different views and ways of thinking where they wouldnt let their pessimism be a stumbling block in their lives. so in a sense you changed their outlook which changed them, but you didnt change who they are...semantics :)
PhilCommander2 4 years ago
Teaching a child how to use language (written, pictures, verbal etc.) isn't change to me. Its parenting and teaching. Its not parenting and teaching though if its done through aversive means or without consent. I think we agree on this. Perhaps we can change the bully or his home environment so he won't feel the need to hurt others. That would improve autistic peoples lives far more than a diet because it will help all autistic people.
christschool 4 years ago
The world will never be full of good parents or people. There will always be bullies but we should always try to make the world a better place for all. I really believe that. Martin Luther King Jr is a hero of mine. But the reality is that hate and ignorance will never be eliminated. So i will do what i can to give my children the skills they need to thrive in a world that can sometimes be frustratingly unfair.
PhilCommander2 4 years ago
but if diet and b12 give that child the ability to tell the bully off and give him a nice left hook to the head...Speak softly and carry a big stick...
PhilCommander2 4 years ago
i wish it were as easy to say live and let live... i don't give a damn if it's a fellow parent with autism or not... don't tell me what to do with my child... or try for my child...it's none of anyone's business...
StarMagick 4 years ago
far out, that was hard work. i didnt know about the 500 character rule!! lol
liamjakesmum 4 years ago
Well said Liamjakesmum. I think you portray how many parents feel/felt. Think about how people must of felt before the internet...they had to read up on it from books in the library that were 20 years outdated. Thanks for taking time to comment!
PhilCommander2 4 years ago
cont. I still think about 'it' alot and i worry about what the future holds for Jake and how he will be treated. I know how he should be treated but i have the benefit of having researched autism because it affects us directly.
liamjakesmum 4 years ago
cont. I was devastated that this was how life was going to be for my son and, at the risk of opening myself up to criticism, for myself. Now, 3 months after dx, i realise that my son is not going to regress or become emotionally distant overnight and i love both my boys more than ever and it is certainly no hardship to do anything for either of them. I have also learnt that you dont really need words to communicate.
liamjakesmum 4 years ago