Wednesday, May 1, 2013

Larsen Update

Time for another Larsen Family Update :)

We would much prefer to be able to call each and every one of you to share this information personally but there just simply isn't enough time in the day to make that happen. We're grateful to be able to share all this with everyone through email and hope that you forgive us if it isn't your favorite way to find out about things.

Two years ago when we had Corban evaluated at The Children's Center for ADHD we also followed up by having Gabe evaluated. When Gabe was evaluated he tested positive for ADHD as well as being right under the line indicating the possibility of having an Autism Spectrum Disorder. We knew that we would likely have to revisit that evaluation a little later to see if it was still close to an Autism diagnosis or if he was moving away from that line. We have done a second evaluation with The Children's Center and it is now clear that Gabe does in fact have Autism in addition to ADHD. He is no longer close to the line for Autism Spectrum Disorders, he is well above the line into the Autism Spectrum.

We are not worried or scared about this diagnosis, in fact we are somewhat comforted by the fact that we now have another piece to the puzzle and more information to help us be the best parents we can be. We are learning more and more about ways we can encourage him in his social abilities as well as his academic endeavors. We love that this diagnosis doesn't change who Gabe is or how much he is loved, but gives us a better understanding of how he is functioning and what some of his strengths and weaknesses may be throughout his life.

Analogy to understanding Autism:
by Mirana Steffen

"Say you want to watch a movie. You need a DVD player, TV, and the red/white/yellow cable. If you get all of the colors put in the right place, you will see and hear your movie. If you don't get them in the right place, you may see the picture but not hear it or hear it but not see it. You may not see or hear anything, rather, get a low hum. You may see and hear everything, but with mild interference because the cords need to simply be tightened.
Either way, all of the equipment for success is there. There is NOTHING missing. Someone with an *ASD has everything they need to be successful, but their "cables" may not be coded "correctly." It's our job as parents, family members, friends, educators, and a community at large, to help our ASD buddies find their Picture, no matter what it may look like to you and me."
*ASD=Autism Spectrum Disorder

There are many resources online to learn more about Autism as well as ADHD. We're happy to share new information as we learn more about these two topics in an effort to help others understand what our children are working with. We'll share a few links in this email as well as some excerpts from an informational packet "Autism Speaks 100 day kit" with notes about Gabe in a bold and colored text.

Feel free to read/skim as far as you'd like or as little as you'd like. We just wanted to provide some basics about this new diagnosis for those that would like to learn more.

Information about ADHD:

Excellent Book that covers a multitude of helpful topics for any child:
Square Peg: my story and what it means for raising innovators, visionaries, and out of the box thinkers by L. Todd Rose

Information about Autism:

Autism Speaks 100 Day kit can be downloaded for free here in it's entirety:

Autism Speaks 100 day kit excerpts:

Why does my child need a diagnosis?
There are however, several reasons having a diagnosis is important for your child. A thorough and detailed diagnosis provides important information about your child’s behavior and development. It can help create a road map for treatment, by identifying your child’s specific strengths and challenges and providing useful information about which needs and skills should be targeted for effective intervention. A diagnosis is often required to access autism specific services through early intervention programs or your local school district.

While the causes of autism are complex, it is clear that it is not caused by bad parenting. Dr. Leo Kanner, the psychiatrist who first described autism as a unique condition in 1943, believed that it was caused by cold, unloving mothers. Bruno Bettelheim, a renowned professor of child development perpetuated this misinterpretation of autism. Their promotion of the idea that unloving mothers caused their children’s autism created a generation of parents who carried the tremendous burden of guilt for their children’s disability. In the 1960s and 70s, Dr. Bernard Rimland, the father of a son with autism, who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is a biological disorder, and is not caused by cold parents.

Autism affects the way your child perceives the world and makes communication and social interaction difficult. Gabe has issues with making/keeping friends. Even at the young age of 3 and 4 other kids notice that he's different in the way he plays and most shy away from him. When he does invite someone into his world he gets easily frustrated if they don't "pretend the right way". He assumes that everyone has the same thoughts about how to pretend so we're working on trying to help him explain more of how he wants us to pretend with him as we play. We have also been trying to schedule play dates often in places where it's a neutral ground so neither party feels as though it is "their turf". He may also have repetitive behaviors or intense interests. Symptoms and their severity are different for each child in each of the affected areas (Communication, Social Interaction, and Repetitive Behaviors). Your child may not have the same symptoms and may seem very different from another child with the same diagnosis.

Although autism is usually a life-long condition, the symptoms of autism can change over time. The long term outcome is highly variable. Some children lose their diagnosis over time, while others remain severely affected. Many have normal cognitive skills, despite challenges in social and language abilities. Most individuals with autism develop speech and learn to communicate with others. Early intervention can make extraordinary differences in your child’s development. How your child is functioning now may be very different from how he or she will function later on in life.

Social Difficulties
Children with autism are also slower in learning to interpret what others are thinking and feeling. Subtle social cues such as a smile, a wave, or a grimace may have little meaning to a child with autism. To a child who misses these cues, "Come here" may always mean the same thing, whether the speaker is smiling and extending her arms for a hug, or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with autism have difficulty seeing things from another person’s perspective. Most five-year-olds understand that other people have thoughts, feelings, and goals that are different from their own. A child with autism may lack such understanding. This inability leaves them unable to predict or understand other people’s actions.

Although not universal, it is common for people with autism to have difficulty regulating their emotions. This can take the form of "immature" behavior such as crying in class, or verbal outbursts that seem inappropriate to those around them. Sometimes they may be disruptive and physically aggressive, making social relationships even more difficult. They have a tendency to "lose control", particularly when they’re in a strange or overwhelming environment, or when they are angry or frustrated. At times, they may break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair or bite their arms. We've been blessed that Gabe doesn't use self harm, however, many times during a frustrating situation he will lash out physically by throwing a toy, or hitting whoever he feels is responsible for his frustration. This happens with regular kids as well, however it takes much much much longer for a child with Autism and/or ADHD to learn to Stop. Think. THEN Act because their brain just functions on a "Ready Fire Aim" mindset naturally. It involves many role playing situations and many teaching moments after accidents happen and just when you think they're getting it you start over at square one after some big explosive set back. We are also still working with Corban on this same issue daily. The violence that they exhibit is something we deal with on a daily basis and stress about more than any other aspect of these two disorders. Support, encouragement, and non-jugemental comfort in this area is appreciated more than we can ever express.

Communication Difficulties
By age three, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says a word or two, turns and looks when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is "no". Although a minority of people with autism doesn’t use speech, the large majority develops spoken language, and all eventually learn to communicate in some way. Most infants who later show signs of autism "coo" and babble during the first few months of life, but over time, they stop. Others may be delayed, developing language as late as age five to nine. Some children may learn to use communication systems such as pictures or sign language. Children with autism who do speak often use language in unusual ways. Gabe never had delays in his early speech-He has always had quite a sizable vocabulary for his age. He does however use language in unique ways as well as stuttering quite often, or repeating the same portion of a sentance over and over again. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. They may repeat or "parrot" what they hear, a condition called echolalia. Although many children with autism go through a stage where they repeat what they hear, it normally passes by the time they turn three. Some children with autism who are only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but still have great difficulty in sustaining a conversation. The "give and take" of normal conversations may be hard, but they may often carry on a monologue on a favorite subject, giving others little opportunity to comment. Gabe frequently talks "at people" he struggles a great deal with being able to carry on a conversation in a back and forth manner. Another common difficulty is the inability to understand body language, tone of voice, or "phrases of speech." For example, someone with autism might interpret a sarcastic expression such as "Oh, that’s just great" as meaning it really IS great. It can be challenging sometimes for others to understand what children with autism are saying, as well as what their body language means. Facial expressions, movements, and gestures may not match what they are saying. Also their tone of voice may fail to reflect their feelings. They may use a high-pitched, sing-song, or flat, robot-like voice. Gabe speaks in different voices usually around 50-70% of the day. His favorites are "a kitty voice" and a "robot voice". We are fortunate that he is kind enough to "speak in a Gabe voice" when we request it in situations where we need to know that he's listening to instructions about safety or directions to what we need him to do. Some children with relatively good language skills speak like little adults, failing to pick up on the "kid-speak" that is common in their peers. Gabe (while playing with a dinosaur who was consuming an action figure) yelled at me in a tortured guy voice: "help me help me!! get me out of this monstrosity!!!" Gabe's verbal skills are a great blessing and source of many many laughs throughout the day to say the least. Without meaningful gestures or the language to ask for things, people with autism have difficulty letting others know what they need. As a result, they may simply scream or grab what they want. Fortunately, children with autism can be taught to communicate in more appropriate way.

Repetative Behaviors
Although children with autism usually appear physically normal, odd repetitive motions may set them apart from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals with autism repeatedly flap their arms or walk on their toes. Gabe flaps his hands frequently when he gets excited or when he is playing. Some suddenly freeze in a position. As children, individuals with autism might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. Gabe lines up his toys in many different ways "in movies" he does have an extremely hard time if someone disturbs his movie guys but he is learning to take a deep breath and use his words instead of using a physical response like hitting. If someone moves one of the toys, the children may become tremendously upset. Many children with autism need and demand absolute consistency in their environment. A slight change in routines, such as eating a meal, getting dressed, taking a bath, and going to school at a certain time or by the same route, can be extremely stressful. Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. These strong interests may be unusual because of their content (e.g. fans or toilets) or because of the intensity of the interest (e.g. extremely detailed information about Thomas the Tank Engine). For example, a child with autism might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often older children with autism have a great interest in numbers/ letters, symbols, dates or science topics.

Just as individuals with autism have a variety of difficulties, they also have some distinctive strengths. Some of the strengths that individuals with autism have may include:  Ability to understand concrete concepts, rules and sequences

 Strong long term memory skills Gabe

 Math skills

 Computer skills

 Musical ability Gabe

 Artistic ability

 Ability to think in a visual way Gabe

Ability to decode written language at an early age (This ability is called

Hyperlexia. Some children with autism can decode written language earlier than they can comprehend written language.)

Honesty – sometimes to a fault

Ability to be extremely focused – if they are working on a preferred activity Gabe has this ability and it is also a symptom of ADHD- called Hyperfocusing. This can be a HUGE help or a HUGE setback. Example: If a child is hyperfocusing on completing an art project it's a good thing right? until art time is over and they need to transition to a different subject and can't hear the teacher say that art time is over because they're focusing so intently on the art project.

 Excellent sense of direction Gabe can become concerned if we use a different route to drive somewhere so we've been working on making small deviations (while talking him through it) from the normal ways we drive to expose him to the idea that it's alright to take a different way- we won't get lost.

"How can my child have Autism when he seems so smart?"From Does My Child Have Autism? by Wendy Stone

Right now you might be thinking about all the things your child with autism learned at a much younger age than other children you know. And yes, you are right: there are also things that children with autism learn on their own much faster than their typically developing peers or siblings. For example, they can be very good at learning to pick out their favorite DVD from a stack, even when it’s not in its case. They may learn at a very young age how to operate the remote controls to the TV and DVD player so that they can rewind their videos to their favorite parts (or fast forward through the parts they don’t like). They can be very creative in figuring out ways to climb up on the counter to reach a cabinet that has their favorite cereal, or even how to use the key to unlock the dead bolt on the back door so they can go outside to play on the swing. Clearly, these are not behaviors that you would even think about trying to teach a two-year-old child. And yet some children with autism somehow manage to acquire these skills on their own. How can we understand this inconsistency between the things children with autism do and don’t learn? How can a child who can’t put different shapes into a shape sorter learn to turn on the TV and DVD player, put a DVD in, and push the play button? How can a child who can’t understand a simple direction like "get your coat" figure out how to unlock a door to get outside? We've run into this issue frequently at our house. Many of you who are "facebook friends" have seen posts about how Gabe escapes into the snow in barefeet so he can go see the chickens in just the amount of time for a mommy to take a potty break. Or escape to tell a neighbor hi. Or escape to go swing. Or escape to just enjoy the "nice fresh air". We installed chain locks on our doors in hopes that would deter him however he just started using toys as tools to unlock the chain and escape anyway. We're still working on coming up with a Gabe proof door lock. Don't get us wrong- we don't want our home to be a prison, but we need him to be supervised while he goes on these adventures. Mommy needs potty breaks, Chloe still needs naps, etc. so we can't be outside all the time-even though gabe would probably love to live like a mountain man.

What accounts for this unique learning style? In a word: motivation. We all pay attention better to the things that interest us, so we become much more proficient at learning them. Understanding what is motivating to your child (all children are different) will be one of the keys to increasing their learning and their skills. Your child’s special talents may be part of his unique and inherent learning style and nature. Once again the Hyperfocusing can be a gift or a curse depending on what context it is in. Gabe is motivated by: Kitties, Tigers, Lions, Puppies, Dogs, anything fuzzy/soft really so most animals fall into this category, the outdoors, Chloe, Cherry Tomatoes, Carrots, Swinging, Skylanders, Library books, and many many more "favorites" as he calls them.

We would love to share the whole section entitled: You, Your Family, & Autism with everyone but we're already taking a large portion of your time with everything in this post. If you would take the time to download the kit and read at least that section we would really appreciate it. We love all of you and sincerely appreciate your love and support. Feel free to call or email us with any further questions, comments, or suggestions. Thanks again!

With Love,
The Larsen Family

(and baby squatch due in may or june)

The Larsens