My thoughts on autism/spectrum

Morgan - posted on 01/10/2010 ( 21 moms have responded )

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My son has been diagnosed autism. I love him with all of my heart just like everyone on this site loves their child but I have just one issue....Why is it that we as mothers have a tendency to see all the wierd, quirqy things are children do as such a big issue! Yes autism spectrum comes with issues (speech etc) but what a beautiful mind...when I look at my child I see a smart, loving,caring, intellectual, spontanous child. A child that at most times has things more figured out then the average person. I believe even with this "LABEL" as I would call it, he will do just fine. Most moms may think that I am setting myself up for failure but I believe the "LABEL" will too. I feel if I look outside of the box (spectrum) things will get better and have been getting better.
Yes OT/PT/ST will help, but we as moms are the true teachers!! We know are children and are children trust us. We have to find a way of making our children learn and grow just like everyone else.
Since all of this came about I have been determined to treat my child like any child should be treated. And of course with several meltdowns even when brought outside, he got over it. The first couple times it was terrible, screaming, crying, wanted to go in but I refused! It took 5 tries and WOW what a change...he wan't to be outside all the time,play,play,play!! This is just an example of many of the obstacles he has faced with success. Grocery stores was the major one....I brought him once a day for 10 days and on the 11th day...NO MORE TANTRUM!! YAYY :) Yes of course I had major looks at people who probably wondered what the heck was wrong with him but too those who may never understand...HE"S GIFTED!!!
I just want everyone too know that there is hope and hope is HUGE..if we have it..they will make it :)

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User - posted on 01/12/2010

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I have thought a lot about what you have written, and I commend your positive outlook. More people need hope in their lives when they are dealing with any sort of challenge.



I don't believe autism is a label. I am very clear with people that this is a medical diagnosis or a neurological disorder. Labels are used when people don't understand what is wrong with our children, and that label covers their eyes from everything that is right...all they see is the problem. When I identify the diagnosis, labels are removed and understanding begins.



You speak from the perspective of someone with, I believe, a higher functioning child. I have known, and taught, many non-verbal children. Their parents live each day in hope, but there comes a time when they need to accept that their child will never speak, never be out of diapers, and never live independently. These parents are the bravest people I have ever met because they live their life knowing that a time will come when their child will have to live life without them, and they have to make preparations for that day. I have also met parents who still live in blind hope that a "cure" will be found...goat serum, hormonal therapies, traditional methods...anything to bring their child out of their internal world. It is heartbreaking. Part of my job was asking people, after age 21, what are your plans for your child....because at 21, they no longer have the support of the public education system (in Ontario)



We are our children's best teachers, but the vast majority of us do not have an intuitive understanding of autism and how to approach it. A typical parent's role is to teach their child how to live a good, independent life, to follow a moral code, to have some foundation to guide them on. We cannot "teach" what we ourselves were never taught. We would not expect parents to teach away diabetes, or epilepsy, or mental illness. Autism, just like every other disorder, needs intense intervention from the minute it is diagnosed. We need our professionals to shine the light on a very dark path, because otherwise children will be lost.



Children with autism are on a spectrum. If your child is higher functioning, then you can have higher expectations. Every child is unique, and each child responds differently to the world around them. I am certain that if we had not had OT intervention, my son would have regressed into a non-responsive, non-verbal state. I am also certain that if I hadn't used the strategies that I did (as instructed by his OT and as learned as a result of my profession) his self-injurious behaviours would have escalated to the point of putting himself in danger.



Autism is a medical diagnosis that has exploded in the past fifteen years. It is possible that some higher functioning children would not have even been looked at a generation ago...they were just the "touchy" kids who whined a lot, or the kids who wouldn't sit still and were picky....but thanks to education and awareness, these kids are getting help and don't have to live their lives feeling out of sync with everyone else.



We cannot "will" autism away with our love and persistence. We manage it, we out strategize it, and we pull our children out of its grips through knowledge and understanding.



For the parents who have children lost in the world of autism, admire their courage because they live on the frontlines of this fight every day of their lives. They have tried everything, they do everything, and their lives are dedicated to their special children.



Sheila

Jessica - posted on 01/11/2010

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I didnt have a clue it was autism with my boys until they were 8 and didnt get a educational dx until they were 10. I raised them as i see any child should be raised (by me of course) and so many people complement me on them. Socially they are way below their age but they are loving caring and kind. Yes they are labeled as autistic and they are that is the why for their behaviors but not a excuse.

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Jamie - posted on 03/21/2012

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you are so right on, shiela! i have two autistic sons; one whom is higher functioning and verbal and we push push push him....my other son is low functioning and as of yet, at 4.5, still non-verbal. we push push push him too, but my expectations for each child are different. who knows what the future will bring....you never stop pushing and hoping. they're both progressing. life goes on. my biggest wish in the world is for him to speak....i think the world would open up to him a bit more if he did. potty training would be cool too!!

Elizabeth - posted on 03/21/2012

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I can see both sides of this. The label can hinder in some instances because people want to treat them like they are going to simply shatter like glass and like they should not be able to do the things that other kids get to. On the other side the label is the only thing that got my son into the school program to help learn to speak, hold small objects, and do many other things. I worked with him at home but I did not understand autism completely so my methods did not work as well with him as my daughter. Once I did know he was autistic I did research and prepared everything to teach him the way he needed, as well as, making changes to my everyday life. We stick to a schedule, we play games he can understand, we have little sayings for discipline that go with time out. We take him places he feels comfortable and have worked on helping him get used to vary crowded and noisy public places. We are slowing helping him function with others around. Despite having things that he needs help with he also does many amazing things. He is sweet, caring, loves to build complex structures with different types of blocks, and likes to play dolls with his sister. I know this may sound odd to others but we simply say he has issues and everyone has issues they are just different types of issues. This is basically to say he is just like everyone else, an individual with his own mind.

Congrats on the no more tantrums. I am happy we got better with that too. Also don't worry about what people think when your out because if they have no right to judge anyway. I have had a few of those looks but just smile and keep going about my day. Thanks for the encouragement, there are days when we need it.

User - posted on 01/13/2010

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Quoting Benita:



Quoting Sheila:

I have thought a lot about what you have written, and I commend your positive outlook. More people need hope in their lives when they are dealing with any sort of challenge.

I don't believe autism is a label. I am very clear with people that this is a medical diagnosis or a neurological disorder. Labels are used when people don't understand what is wrong with our children, and that label covers their eyes from everything that is right...all they see is the problem. When I identify the diagnosis, labels are removed and understanding begins.

You speak from the perspective of someone with, I believe, a higher functioning child. I have known, and taught, many non-verbal children. Their parents live each day in hope, but there comes a time when they need to accept that their child will never speak, never be out of diapers, and never live independently. These parents are the bravest people I have ever met because they live their life knowing that a time will come when their child will have to live life without them, and they have to make preparations for that day. I have also met parents who still live in blind hope that a "cure" will be found...goat serum, hormonal therapies, traditional methods...anything to bring their child out of their internal world. It is heartbreaking. Part of my job was asking people, after age 21, what are your plans for your child....because at 21, they no longer have the support of the public education system (in Ontario)

We are our children's best teachers, but the vast majority of us do not have an intuitive understanding of autism and how to approach it. A typical parent's role is to teach their child how to live a good, independent life, to follow a moral code, to have some foundation to guide them on. We cannot "teach" what we ourselves were never taught. We would not expect parents to teach away diabetes, or epilepsy, or mental illness. Autism, just like every other disorder, needs intense intervention from the minute it is diagnosed. We need our professionals to shine the light on a very dark path, because otherwise children will be lost.

Children with autism are on a spectrum. If your child is higher functioning, then you can have higher expectations. Every child is unique, and each child responds differently to the world around them. I am certain that if we had not had OT intervention, my son would have regressed into a non-responsive, non-verbal state. I am also certain that if I hadn't used the strategies that I did (as instructed by his OT and as learned as a result of my profession) his self-injurious behaviours would have escalated to the point of putting himself in danger.

Autism is a medical diagnosis that has exploded in the past fifteen years. It is possible that some higher functioning children would not have even been looked at a generation ago...they were just the "touchy" kids who whined a lot, or the kids who wouldn't sit still and were picky....but thanks to education and awareness, these kids are getting help and don't have to live their lives feeling out of sync with everyone else.

We cannot "will" autism away with our love and persistence. We manage it, we out strategize it, and we pull our children out of its grips through knowledge and understanding.

For the parents who have children lost in the world of autism, admire their courage because they live on the frontlines of this fight every day of their lives. They have tried everything, they do everything, and their lives are dedicated to their special children.

Sheila





Autism is not a disease it is a developmental delay, Just a reminder, it doesn't mean a child can't develop it's just that they haven't yet. I honestly believe with more education,focus, therapies and investigation that we will see a lot more success stories than we have in the past- a lot of damage has been done thanks to misdiagnosis and bad treatments and therapies in the past... My son is severely ASD, that is his diagnosis and he presents very mildly now thanks to research and applied therapy. ( as well as parents who won't take- he can't- for an answer. )






To clarify:  I do not believe autism to be a disease.  It is a neurological disorder...a medical diagnosis.  This disorder manifests itself in areas of communication/behaviour/ and socialization. In my neck of the woods, a developmental delay refers to IQ. I do understand what you mean though, and I can see your point of view.

I strongly believe that parents, once educated, are their child's best and most important advocate.  I also believe that advances in therapies and treatment will result in more and more success stories. I am very thankful that my son was born in 2004 and not 1984. His future would have been very different had he been born a generation ago. 



I think that my main objective is to say that we can't judge other people's experiences based on our own.  We need to remember that autism is unique to each individual. 



 



Sheila



 

Kali - posted on 01/13/2010

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When my son was first diagnosed(on the spectrum) I couldn't believe that was what it was. He was our first and I just thought it was all normal behavior, until he was 4 and still having major meltdowns. His preschool teacher was the one who suggested he get observed by the school district. After months of them working with him in his everyday setting(preschool/daycare) he turned into a totally different kid. He was playing better, fighting us on things less, and really blossoming socially. I heard from so many people who said we should have him medically tested for Aspergers, but I didn't want his diagnoses/label to follow him around forever. We chose to only tell our closest family members and friends, his pediatrician(who agreed to keep it out of his records), and his teachers in school. My son is now 7 and in 1st grade. We have never told him he has Autism nor do we treat him like he does. He is expected to everything any other child his age does. I always thought that if he knew he may try to use it as a crutch. When he started school this fall his teacher said that if she had not read his file, she would have never know he had Autism. Keep in mind he is considered to be a mild case, but no matter where they are on the spectrum we treat them all like they are any other child. They will only pity themselves if we let them.

Heather - posted on 01/13/2010

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When my son was diagnosed at 4 years old, I remember asking "What should we do for him at home?" I will never forget the doctor's answer..."Treat him like your other kids. He doesn't need special treatment at home." My son is my fifth child out of seven kids. I don't have time to baby him. He has always been treated the same as all the others. I, too, thought with enough exposure, my son would adjust to going to the store, etc. He's now 10 years old and still does not like going to the store. There are too many people, too much confusion, and too much noise. Do I still take him to the store? Yep, I do. He has chores just like the rest of my kids and he has to follow the same rules of the house like the rest of them do. I love my son and he brings joy to my life. I have never considered "autism" a label. It's always just been something he has...just like my one son has red hair and my daughter has problems with math.

Analia - posted on 01/13/2010

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I would like to add my thoughts and experiences to also help those who may be discouraged because my husband and I went through similiar experiences with our son Jacob. We noticed Jacob, shortly after reaching his 1st year would play with toys inappropriately, such as spinning cars upside down. We didn't think much of it at the time. However, he had no language, just screaming. At (2) years of age, we were concerned, but thought that he might grow out of it. Oddly, our son Jacob always had great eye contact, he would stare straight at somebody, and he still does have great eye contact. A friend of ours mentioned to us that our son might be autistic (just like her son), and we were very scared and didn't know what to do. However, she was a great advocate to us, and told us to go the the Regional Center (in California where we live) and they would start on services for Jacob. At (3), he was diagnosed with autism (moderate), and they told us that they didn't think that Jacob would ever get better to the point of being to take care of himself someday. I didn't like that assessment, in fact I set a goal to have our son Jacob in a regular general education class by the time he was six years old.

At (4) years old, was was enrolled in Special Education classes (in LAUSD) and we enrolled Jacob in the best program that we could find for him, called (The Center for Autusm and Related Disorders) - C.A.R.D. It took us (2) years to get him enrolled due to waiting lists, but once he got enrolled, he got 30 hours of therapy (ABA therapy) per week at home. The therapy that Jacob received has turned his life around. He finally started to talk at six years old. Small words, nonetheless, they were words. Hope we had for Jacob, and to this day (Jacob is now 12 years old) - he still receives therapy (through a different group, since we moved too far away), but the foundation was laid for Jacob to be able to understand basic things, ideas, etc. Conversation with Jacob is difficult, he is a great reader and really stems alot. He has greatly improved since he was originally diagnosed with autism, and my husband and I are grateful for all of the hard work that the therapists and his teachers have done for him. We feel that he will live with us for the rest of his life, but we have accepted the fact that as much as he progresses each day, his disability is a lifetime one. It has been a difficult road for us, but with the right diagnosis and early intervention (between 2-5 years old) - the earlier the better - your son/daughter can improve just like our son has.

Benita - posted on 01/13/2010

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Quoting Sheila:

I have thought a lot about what you have written, and I commend your positive outlook. More people need hope in their lives when they are dealing with any sort of challenge.

I don't believe autism is a label. I am very clear with people that this is a medical diagnosis or a neurological disorder. Labels are used when people don't understand what is wrong with our children, and that label covers their eyes from everything that is right...all they see is the problem. When I identify the diagnosis, labels are removed and understanding begins.

You speak from the perspective of someone with, I believe, a higher functioning child. I have known, and taught, many non-verbal children. Their parents live each day in hope, but there comes a time when they need to accept that their child will never speak, never be out of diapers, and never live independently. These parents are the bravest people I have ever met because they live their life knowing that a time will come when their child will have to live life without them, and they have to make preparations for that day. I have also met parents who still live in blind hope that a "cure" will be found...goat serum, hormonal therapies, traditional methods...anything to bring their child out of their internal world. It is heartbreaking. Part of my job was asking people, after age 21, what are your plans for your child....because at 21, they no longer have the support of the public education system (in Ontario)

We are our children's best teachers, but the vast majority of us do not have an intuitive understanding of autism and how to approach it. A typical parent's role is to teach their child how to live a good, independent life, to follow a moral code, to have some foundation to guide them on. We cannot "teach" what we ourselves were never taught. We would not expect parents to teach away diabetes, or epilepsy, or mental illness. Autism, just like every other disorder, needs intense intervention from the minute it is diagnosed. We need our professionals to shine the light on a very dark path, because otherwise children will be lost.

Children with autism are on a spectrum. If your child is higher functioning, then you can have higher expectations. Every child is unique, and each child responds differently to the world around them. I am certain that if we had not had OT intervention, my son would have regressed into a non-responsive, non-verbal state. I am also certain that if I hadn't used the strategies that I did (as instructed by his OT and as learned as a result of my profession) his self-injurious behaviours would have escalated to the point of putting himself in danger.

Autism is a medical diagnosis that has exploded in the past fifteen years. It is possible that some higher functioning children would not have even been looked at a generation ago...they were just the "touchy" kids who whined a lot, or the kids who wouldn't sit still and were picky....but thanks to education and awareness, these kids are getting help and don't have to live their lives feeling out of sync with everyone else.

We cannot "will" autism away with our love and persistence. We manage it, we out strategize it, and we pull our children out of its grips through knowledge and understanding.

For the parents who have children lost in the world of autism, admire their courage because they live on the frontlines of this fight every day of their lives. They have tried everything, they do everything, and their lives are dedicated to their special children.

Sheila


Autism is not a disease it is a developmental delay, Just a reminder, it doesn't mean a child can't develop it's just that they haven't yet. I honestly believe with more education,focus, therapies and investigation that we will see a lot more success stories than we have in the past- a lot of damage has been done thanks to misdiagnosis and bad treatments and therapies in the past... My son is severely ASD, that is his diagnosis and he presents very mildly now thanks to research and applied therapy. ( as well as parents who won't take- he can't- for an answer. )

Benita - posted on 01/13/2010

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I agree emphatically- I too dragged my 'gifted' child around and forced him to do things i believed he should be able to do, once adjusted. (including the shopping centres) . He is going great thanks to my steadfastness, determination, and resourcefulness. he now enjoys the shops, and change is now mostly an object for intelligent discussion. Autism the experience should make people appreciate looking 'outside' of the box and seeing that there are really amazing things outside the box too. in some cases I wish the world a little autism then we actually might appreciate life in it's true beauty a bit more. Thanks for the post- don't ever give up on your child, then they give up on themselves....

Chantelle - posted on 01/12/2010

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So nice to see someone being positive about there child with autism. You are a fantastic mum and are obviously doing a wonderful job. You have made my day because I am sick of reading peoples posts about all the negative aspects of their child, after a while it gets depressing. My son has aspergers and he is just the most beautiful little boy, I love him to bits. He makes me laugh and smile every day and I wouldn't change him a bit.

Sarah - posted on 01/12/2010

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I understand what you are saying, but there are times when I cannot expect my daughter to be "like any other child". I do not want her "label" to follow her or go before her. I don't want to "excuse" her actions either. Yes. I will tell people she is autistic, not to explain away her actions, but to get understanding, for her...for me. I will definitely admit I hate how people stare at me as I do odd things to calm my 45lb 3 year old in a shopping cart, or how they whisper about the way I talk to her or how she acts. I dunno. Perhaps I'm bitter today.

Jessica - posted on 01/12/2010

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I dont see autism as label either. I see it as a diagnoses that allows my boys to get the services at school they need to grown and learn both academically and socially. Here they have a autism room there are 18 kids in the room only 4ish are in the room full time the others are in the mainstream classrooms including my boys but they have social skills groups once a week that my boys go to. They are also there for support to help them through meltdowns and how to better handle the situation that led up to the meltdown. Without this diagnoses I would be getting called down to the school daily for their behavior. Like I did at their old school in Cali. There were no programs and you couldnt even say autism to them because they didnt have the funding even to legally that is no excuse. So for me and my boys being diagnosed autistic is a good thing. They are the same kids they were before the dx they are just getting the help they need now.

Melanie - posted on 01/11/2010

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everyone sees it differently. I try to see each step he takes as the road to better things. Yes he struggles with everyday things and he doesn't speak to me or call me mummy. But i know he is the most loving child, he cuddles me and responds so well to us. I think us as mums sometimes need to take a step back and be grateful for the things that they can do. Being labelled is hard to deal with it's sometimes hard to see past that. xx

Michelle - posted on 01/11/2010

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You are on the right track. And you are right. I don't believe in "instututional mentality". or "Umbrella classrooms". We have to be sure that these children are able to function in the real world that they are living in. Like moving next door to a fire house, at first the sirens will wake you up, but eventually you don't hear them anymore. The same analogy goes to what you are doing with your child. Take him everywhere so that eventually he can cope with the stimuli that is presented to him. I know it's hard and people look at you funny, but you will look at yourself funny if you don't do it.
The label doesn't change who your son is. All you have to do is draw the line to what is appropriate and inappropriate behavior which is what you would do for any child. Target the unwanted behaviors one or two at a time..Only you know how far you can push your own child before it can adversly affect them. As I used to say: Being nice to my child is actually being mean to my child.. Only certain parents understand this statement.

Renee - posted on 01/11/2010

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Rebekah - I just wanted to say thank you for your comments about pushing our kids harder. Once the school asked me if I wanted my son to have alternative curriculum which translates to easier. I said no way, he's intelligent and there is no reason to dumb things down for him. They agreed with me but they said the other children with autism got the alternative curriculum because the parents did not want it to be too challenging. My son is in the 2nd grade doing work at a 3rd through 8th grade level in different subjects. Can you imagine how bored he would be had we dumbed it down? I wish all mothers (and fathers) would push the kids even just a little because most of them can do it, they have the brains. We do have to be the ones to stand behind our children and give them that extra encouragement and support, and I applaud all of you!

Rebekah - posted on 01/11/2010

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I love what you said about how the "LABEL" can effect the child. My son who is now 10 was diagnosed with Autism at 3. I was devistated at the time, they said he was on the low functioning end of the spectrum, which I didn't believe. Since the diagnosis I have pushed him and expected him to behave and accomplish the same things as any other child. He was in speech and occupational therapy, and a special pre-school and all of the therapists and teachers thought I was crazy for pushing him so hard, they said I expected to much from him, he wasn't capable. Well as I said, he's 10 now, he still has the "LABEL" of course, but he is high functioning. He still has some problem area's but he has been mainstreamed into general ed. classes. Aside from some behavior problems which is typical for any pre-teen he is a well adjusted boy.

Paulette - posted on 01/10/2010

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I totally agree with your sentiment and congratulations on your strength and perseverance in helping your child. My eldest son who is nearly 6 has only just recently been diagnosed so I didn't know any different and also took him out into situations which caused meltdowns again and again and again because I thought he would come around like your son. The difference I experienced is he never eventually became comfortable and the meltdowns continued and in fact because I kept placing him in these situations over and over again he actually was getting worse and becoming more out of control especially the older he got. I am now seeing a similar pattern in his younger brother who it about to be assessed. I guess just as all typical children are different so too are all children on the spectrum and it is just about finding what is best for each of our children regardless of a label or not. My children are all special and can do amazing things but what breaks my heart is that it is the little things they find so challenging and regardless of all my efforts they just cannot seem to overcome their anxiety in these situations which causes them to become both verbally and physically abusive. My children just being different is not an issue for me and I love their uniqueness but it upsets me that they are unhappy and distressed for so much of each day. All I want is for my children to be happy, which of course is what every mother wants for her child, but the road ahead is just a lot more challenging for us and our children.

Magen - posted on 01/10/2010

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I do agree with you that as mothers when we hear the diagnosis we tend touse it to justify our childs actions. I didn't get my sons diagnosis until he was older so when he was you and he had a fit we treated him like any other child and he went to time out until he learned what was appropriate and what was not. But I have also found that expecting him to behave a certain way that tends to be what I get. So if I expect him to have a melt down I am rarely disappointed but if I expect him to be okay I usually get that too. So I agree as parents we tend to set them up to act certain ways in certain situations. It is harder and takes more work than with "typical" children but we can't keep them in a bubble becuase we don't want to have to deal with the process of getting them comfortable with the great big wide world. I commend you for taking you child out and helping him get used to crowds and public places. This will pay off huge for you in the future. And go you for not giving up!

Meryet - posted on 01/10/2010

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Well said! I agree with you! I know it's probably not the right wording but I say my son is my "special little boy". Whenever I call him that he just beams from ear to ear :). I treat him the same as I do my 7 y/o. With obvious differences due to the age difference. However, it's tricky in my household as my daughter is extremely "gifted". Honor roll, teachers pet, all that. She is so intelligent (her father & I were never more than c-d students) that I often wonder where in the world she got it from. Then for my son to have so many learning issues :(. I try my best to treat my son as if he is just one of the kids & his "fits" have become less & less frequent thank goodness :)



Very good advice you have there!

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