FROM THE HILL AT HOPEWELL »

it has recently occurred to me that some of our family, friends, and readers may have questions and want to know more.  i want nothing more than for people to understand.  i do feel very very strongly that people need to be better educated, so i have put together a little Q&A.  hopefully this will satisfy some curiosity.  if you happen to have any questions that i have left out, please ask away in the comments below, or contact me personally by email or phone.  i will do my best to answer in the most educated way that i can.  i realize that some who are reading may be new here, and may have no clue as to what i am talking about.  you can take a look around this blog and find information all over.  but if you click on the categories under this post, you will quickly fall in love and learn about autism a little from our perspective.

what is an autism spectrum disorder?  autism spectrum disorders (ASD) are complex neurological disorders that affect individuals in different areas — communication (verbal and nonverbal), repetitive behaviors, cognitive development, and social interactions.  autism is referred to as a spectrum disorder — meaning that the symptoms can occur in any combination with varying degrees of severity. no two children with an autism spectrum disorder are alike, or display the same symptoms and characteristics.

what are the symptoms of an autism spectrum disorder?  each child with an autism spectrum disorder will have his or her own individual pattern of autism.  signs of an autism spectrum disorder can include: repeated motions (rocking or spinning), avoiding eye contact or physical touch, delays in talking, communication problems, repeating words or phrases (echolalia), and getting upset by minor changes.  people with autism sometimes may have physical symptoms, including digestive problems such as constipation, and often have sleep problems. digestive problems are very common in children with autism. children may have poor coordination of the large muscles used for running, climbing, and riding a tricycle… or the smaller muscles of the hand used for writing. children with autism may have over-stimulated senses and often are extremely sensitive to certain sounds, touch, tastes, sights, or smells.

when are the signs of autism noticed?  the characteristics, signs, and/or symptoms of an autism spectrum disorder may or may not be apparent in infancy, but usually appear during early childhood. sometimes, a child’s development is delayed from birth. other children with autism develop normally, before suddenly losing social or language skills. some children develop normally until 18-24 months old and then stop or lose skills.  in some children, a loss of language is the impairment. in others, unusual behaviors are predominate.  before a child turns three, careful observers can see signs of autism.

how common is autism?  autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify that 1 in 88 American children are on the autism spectrum.  these statistics also show that autism is three to four times more common among boys than girls. an estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.

what causes autism?  autism has no one single cause.  today, researchers believe several different things may contribute to autism… from environmental factors, to genetics, to vaccinations, to abnormalities in several regions of the brain, to certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain.

where does your child fall on the autism spectrum?   he was actually diagnosed with PDD-NOS.

what is PDD-NOS?  PDD-NOS stands for pervasive development disorders-not otherwise specified. pervasive development disorders is the umbrella term for a group of disorders that includes autism, asperger’s disorder, childhood disintegrative disorder, rett’s disorder, and pervasive developmental disorder-not otherwise specified (PDD-NOS).  like all forms of autism, PDD-NOS can occur in conjunction with a wide spectrum of intellectual ability.

what are characteristics of PDD-NOS?  defining features of PDD-NOS are mostly significant challenges in language development and some cognitive impairments, but whose stereotypical and repetitive behaviors are noticeably mild to moderate.  some developmental health professionals refer to PDD-NOS as ‘subthreshold autism.’ in other words, it’s the diagnosis they use for someone who has some, but not all, characteristics of autism, or who has somewhat mild to moderate symptoms. for instance, a person may have significant autism symptoms in one core area such as social deficits, but mild to moderate or even no symptoms in another core area such as restricted, repetitive behaviors. as with all autism spectrum disorders, individuals with PDD-NOS vary widely in their strengths and challenges.  as previously mentioned, no two individuals with PDD-NOS are alike. indeed, they can have completely different strengths and challenges.

what are the symptoms of PDD-NOS?  no two children with PDD-NOS have the same symptoms. PDD-NOS symptoms can be mild, with the child exhibiting only a few symptoms.  other children may have a more severe form of PDD-NOS and have difficulties in all areas of their lives.  language delays may or may not hinder their ability to socialize with others. often children with PDD-NOS have difficulty understanding body language, facial expressions, and tone of voice. another common symptom of PDD-NOS is difficulty understanding emotions. the child may not be able to distinguish when someone is happy, sad, or angry.  children with PDD-NOS usually have language and communication problems. when some children with PDD-NOS do learn words, they exhibit echolalia, which is repeating words or phrases over and over again. children with PDD-NOS often take language literally and don’t understand when someone is joking or being sarcastic. if the child with PDD-NOS has some language, it is easier to expand language in these children, than it is with a child who is completely nonverbal.  behavioral symptoms of PDD-NOS can include emotional outbursts and tantrums. these children may become very dependent on routines and have a need for things to be the same. they can misinterpret situations and become frustrated easily. it is important to remember that often these tantrums are a result of fear, anxiety, or misunderstanding a situation.  a common symptom of PDD-NOS is perseveration or dwelling on a certain subject. they often have an overwhelming preoccupation with one subject preferring only to talk about or play with toys that are associated with the area they are interested in.

is there a cure for autism?  there is currently no cure for autism.

how is autism treated?  continued research has provided a clearer understanding of the disorder and has led to better treatments and therapies. studies have shown that appropriate intervention can lead to better outcomes for children with autism.  early intervention can significantly improve the quality of life for individuals with autism.  however, the majority of individuals with autism will continue to exhibit some symptoms in varying degrees throughout their lives.  no two individuals with autism are alike.  therefore, all treatment outcomes will vary.

what do you think about your child being compared to other children?  no two children are alike… regardless if they are on the autism spectrum or not.  therefore, i am not a fan of comparison. i believe that everyone is their own person.

do you feel you need to defend your parenting?  of course.  all the time.  should we need to defend our parenting?  no. but of course we have to.  for instance, being told by others that being enrolled in a daycare or a mother’s day out program would have prevented him from being on the autism spectrum.  autism is much more than just social development.  studies have also shown that there are many children that do not attend daycares from infancy through kindergarten who are not on the autism spectrum and who develop normally without any delays… and other children who do attend daycares from infancy who are on the autism spectrum… so no relation can be made between autism and infants, early childhood, and daycare centers. things such as this is where people are not educated and tend to stereotype and make judgements.  people who think these types of things simply need to be more educated.  it is also disrespectful to the parents of an autistic child to make such statements and judgements.. pointing blame toward parents. instead of a need to defend our parenting… what is most important is that Grayson is very loved, and that’s never been in question.

how do you feel about getting advice and recommendation from others regarding parenting your child with autism?  i am not fond of unsolicited advice at all.  but, of course, people want to give it, and always will – hah.. and they sure know more about your child than you do.  i absolutely love talking with other parents who actually have a child that has been diagnosed with an autism spectrum disorder.  it’s great to chat with other parents who can truly relate and who do not make judgements.  on the flip side, people that do not have a child diagnosed with an autism spectrum disorder have no clue, do not live with it, and really have no place offering any advice, suggestions, or recommendations.. in my opinion.  however, i would really love to help people better understand autism, and i am more than happy to answer any questions to the best of my ability, that are brought directly to me.

is it hard parenting a child with autism?  for us, it is all we have ever known.  it is our life.  it’s what we do.  we have never done anything different. sure, our life with him is centered around how we can best manage his days, his learning, his therapies, his sleep, and his environment. the challenge in all of it, is how sometimes unpredictable each day can be, so we do our best to live on routines.

how do you feel about your child’s diagnosis? there isn’t anything that we wouldn’t do for him, so it isn’t like we aren’t accepting of a diagnosis. we have come to terms with a set of symptoms that are now attached to him that we will never ever let define him and who he is as a person. a diagnosis does not define a person. to us, a diagnosis simply helps us to understand better so that we are able to get him what he needs to help him evolve, progress, and reach his perfect potential.

how do you want your child to feel about all of this?  i hope that Grayson will someday read these pages and find a source of great joy and understanding of our lives together, and how much his parents love him, and that we are his biggest advocates. we will protect him and his privacy to the extent that we as his parents deem as necessary. i don’t want any information to become a place of confusion, where he suddenly discovers that when he was a little boy there was something ‘wrong’ with him. or that Joe and I lived with a fear that he wasn’t ‘normal’… because he is our normal. wherever he is at in the course of his life, he will know that he is amazing. we love every inch of him, and that is what is being built here for him to find.

what if i am curious and have more questions?  ask me.  seriously… just ask.  but out of respect for our child, please ask me.

how do you feel about privacy?  we reserve the right to share what we want, with who we choose to share it with.  our child deserves a right to privacy and respect, just as yours does.  in other words.. there are some things that are only on a need-to-know type basis.  we pick and choose what we wish to share… and here again, with who needs to know, and what they need to know. that’s just how we feel about ‘filling people in’.  we aren’t obligated. it’s our son’s life… no one else’s.

what do you wish from others… family, friends, society?  education, acceptance, awareness, and respect.  over and over and over again.  i understand that i cannot control others or what they may think or say or do, but i do ultimately wish for acceptance, respect, and equality for our child.  for now, i am his voice…. so i will stand up for him, speak for him, fight for him, help him, and defend him.  i want for our child, along with every other child that is on the autism spectrum, to be accepted.  i want to help them.  and i want them to be respected and treated no differently than anyone else.  i don’t want my child singled out, talked about, being a discussion or a debate topic, stared at, made fun of, analyzed by others, or watched closely by others anticipating that something terrible is about to happen.  i do not believe that his medical information should be shared or gossiped about.  it’s only fair.  i’m sure most other parents could agree that they feel the same way.

what do you want people to know?  things are good.  grayson is good.  sure, there are hard days, and there are harder days… but there are also great days and greater days.  i’ll put it like this…  there is always someone in a tougher situation than you, always. i try and remember that. we might all cry and scream over totally different things in life, but the feelings are just as intense, the emotions are the same.  i like to believe that everyone does the best that they can with what life gives them for the most part, day by day.  the point is… life is hard and complicated. it just is. and anyone that is pretending that it isn’t, well, they’re not doing anyone any favors, other than distracting people from the fact that life is hard and complicated. people love fantasy for a reason, so even that happy overjoyed ‘yay, life is perfect’ style has a place.. as long as people are aware that life is not always sunshine and puppies.  all parents experience exactly the same things, it’s just that sometimes the highs are higher, and the lows might be lower.  to us, autism is not this terrible, dark, sad disorder.. we do what we do, we live our life, we go to therapy, we learn new things everyday, we have fun, we teach, we play, we are amazed, we laugh, we have a blast, and we get on with it.  we are fine and we will continue to be fine. we are not living in doom and gloom. we are not the kind of people that give up and turn to sadness. so put your worries for us away.  the hope is that everyone in our lives will continue to treat us as they always have… because if they don’t, we aren’t interested in having them in it.

what point are you trying to prove here?  to educate others that the world is made up of many different kinds of people… and if it wasn’t, the world would be a boring place.  life can be complicated, but beautiful.  sometimes people are so quick to make judgements, and expect a point to be proven. the only point we have to prove is this:  joe and i want for our child to live a happy life and live life to the fullest, as normal as we can make it for him. we do not wish to change him or who he is, nor make him be someone he isn’t.  we will appreciate his talents and excellence.  we want him to excel to his full potential. giving him the resources that he needs to do so, we believe that he will.  grayson may be different, but he is not less.

hope you have a beautiful weekend… we have dreams to chase!  xo.

photo above: watching the helicopter right beside our house.  we have helicopters flying over our house often… training and practicing.  grayson loves hearing them and seeing them in the distance.  yesterday there was one very very close, and it looked as if it was going to land right in our yard… going up and down and up and down… not far from the ground.  grayson looooved watching it so close and so low.  as it flew away, he chased it with his eyes and ears until it was out of sight and until he could no longer hear it.