Dec 16

Christmas wish

I have a Christmas wish.

I would take it over almost any gift imaginable. You may not believe me but it is true. I would take it over a trip to Europe, or a new, fancy car or mansion.

It has been the same wish every year since 2008…

I wish Brody would talk to me!

When I say talk, I do not mean I want to hear Brody use his words. That wish has come true. I adore each and every little word he says and I love his voice. Even if it is just echoing me saying, “I love you”. I cherish it! But as it goes with Brody – I want more of him. I want to hear him play, what he thinks, what he likes, and more. I know Brody says words. He can request things. Every once and a while he will say mommy or daddy.

I wish I could have a conversation with my child.

My Christmas wish this year is that I could have a conversation with my oldest child, my 9 year old.

I wish he could tell me what he wants for Christmas.

I wish he could tell me what his favorite thing about Christmas is.

I wish he could tell me his favorite Christmas movie?

What have they been doing at his school to celebrate the season?

What does he remember about past Christmases

Outside of this season and time of year, it is a wish, hope, dream and prayer I have every day of the year.

I dream about what it would be like to hear Brody talk about his day.

If he likes going to school?

What is his favorite thing to learn about at school?

What does he do during recess?

I often dream about having conversations with Brody. They are amazing dreams. Those are bittersweet but I LOVE them. While I hear his voice in my dreams, I wake up and pray for it to happen. I will have faith that it will happen someday even if sometimes I feel I am losing my grip on the faith I have in my wish.

Is this a happy post? Sad post? I don’t know. And I don’t care to be try to be cheerful or positive. I want to get my thoughts out because it is what is on my mind and how I feel. It is my reality.

Cause, well at Christmas, we have our wishes and this is mine.

Jul 16

Social Media and Autism

As with anything, there are good and bad of social media. People can be too addicted to it and not be present in their own life. Some people troll the internet to attack and criticize people. I have heard stories from parents who have public blogs, Facebook accounts or others who experience harsh treatment for parenting decisions or treatment of those with autism. Some of those stories or comments are almost too crazy to believe yet are true. There are comments strangers will make while hiding behind the faceless interaction on the internet.  As much as I abhor some of the stories and treatment of these people, even the negative has taught me the importance of awareness, anti-bullying campaigns and comradery of the autism community.

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On a day-to-day basis, I find myself almost entirely participating in a positive experience of social community. I am constantly overwhelmed and have a surge of pride and love I feel within the autism community. Parents, adults and teens with autism participate to educate others and others come to find answers. The support shown is amazing. Mostly strangers coming together that have this common trait of loving someone with autism and automatically there is a sense of family. We are there for one another. For me it has been a blessing and answer to prayers. As it can often be isolating having a child with autism, friends and family can try but they cannot offer the same help and insight of those who have been immersed in the world of therapy, state services and more. I am not often able to participate as actively in this community outside my home. Unfortunately, with everyday life I am often home with a sleeping baby, at appointments, attending meetings or unable to go to events. So this experience of finding the autism community through social media has exactly what I have needed in a time with I found it difficult not have a certain type of support.

Additionally, friendships have been established and a bond made that has provided me comfort in times where I felt I could not relate to anyone else yet I needed to vent. I want to help others since I have SO many years of experience and knowledge. Then people post about their newly diagnosed child and their start on this journey. Those same people ask for advice and (almost as if I wish I could have received this same advice years ago) I can offer helpful tips, advice and even direct phone numbers and websites.

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It is funny to think of multi-million (perhaps billion) dollar companies such as Facebook and Instagram being a tool in the lives of so many and help connect people all around the world. In a world that can sometimes be negative, mean, and full of grief, I am reminded through certain experiences the sparks of kindness and the humanity we share.

 

Jan 30

Parenting is never one size fits all

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It has been so very long since I posted. I have had time for short little posts or a picture so I have been keeping up with the Facebook page, An Autism Journey. However, An Autism Journey started as a blog and I need to keep up with it.  Since adding a 3rd child to our lives and a busy fall semester, working, it has been difficult getting around to blogging. In addition, I kept bouncing around ideas in my head of what I wanted to write. I always have so much on my mind about Brody, about autism, how I am feeling that I never know what direction to take my jumbled thoughts. Parenting has been a general topic I kept coming back to you. I never go more than a day or so without seeing some column, article or blog post about parenting. One article was written about how a parent is shocked people give their children so much sugar. Another columnist wrote from the perspective of an education advocate and parents how kindergarteners need to fend for themselves and be the one to remember their backpack, lunch, etc. I have read about moms desperate for deserving breaks and taking time for themselves. I read occasionally about the role of fathers being more important and vital at home in caring and nurturing of children. I see the headlines; I read them when I can.

Then come conversations I have with other parents. Parents I meet and converse with at church, in my family and with my friends who are parents.  All these ideas and principles regarding parenting have been floating around my head each day as I read articles and remembering comments I heard from my sister or from my friend. All of it has to do with what people want for their children and how the day-to-day life is with children.

Instead of any one single thought sinking through or having an epiphany of how to raise my family, it was one general thought that I haven’t been able to shake – Parenting is never one size fits all!

It all started with a girls weekend I had months back with two of my best friends. Neither friend has a child with autism. I have grown to accept and expect when talking about my experience and ideals in parenting, to be different because of Brody. The weekend of talking with these other mothers was inspiring, needed, perfectly timed and wonderfully eye opening! The months that followed of additional conversation, observing other parents and reading these parenting related articles only enhanced and firmly established my thoughts before…Parenting is not a method or formula.

Why do I feel like a failure for not having my child sleep through the night without a pull up on? Well that is because I am supposed to have the child completely potty trained by the time they are 3 years old…right? If they don’t that is like bad for them mentally?

Why do I feel like a bad mother if we all do not sit around the dinner table at dinnertime and eat together as a family? Well that is because eating together as a family is what is good for family and how it is supposed to be….or at least I read that somewhere.

Is it okay my son is sensitive? Aren’t boys supposed to be a little tougher? I mean I think it is okay he is and that is how he seems to naturally be but should I stop it?

These are all examples of my parenting thoughts. After all these months I realize, these thoughts and concerns as a parent are good because we should question ourselves. We should not just keep going with an approach because that is how we have been doing it or it worked for one kid. BUT making changes to how I parent based on someone else’s experience or that I am not doing because it is the way I am ‘suppose’ to do something…that is why I am finally accepted to let go. Let go of expectations, what raising kids is supposed to look like for my family. What my two best friends helped me realize and illustrated when we talked, it does not have to be any certain way. I also realize even though I have a child with autism, I can amend and evolve how I want to take my son’s treatment based on my feelings and intuition. The biggest regard I have and what I am resolved to do is trust myself, how I feel, my intuition as a parent. I did not trust it for so many years and I second-guessed and made many mistakes.

Feelings about myself, my self-esteem, who I am as a person has been an evolution of progress, mistakes, changing, renewed energy, hopefulness and more. I am sure that is the same for most of us. I do not let people tell me I am wrong, fat, ugly, and too sensitive and should change who I am. For the most part, people would not fathom to do that. For whatever reason, parenting is just as personal and close to our hearts as our own journey in life. BUT be a parent and that all changes, people’s barriers and sense of propriety and respect are out the window. Now everyone has an opinion, everyone knows what is right for a child. Bringing life into this world, caring and raising children is a huge and immense responsibility but it does not give someone the right to tell us we are doing something wrong and how to do it right, (unless it involves harming the child or others). Each person is different, the dynamic of each family is different, each child is different, siblings are different from each other, so where in the world do we think education, potty-training, breastfeeding, study habits, attention spans, diets, and more would not have to fit each person.

Parenting is not one size fits all

 

 

Sep 26

Obsessions

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From the time Brody was about two, he started showing one of the symptoms of autism with repetitive behaviors. Many times this was exhibited by fixating or obsessing on a toy, book or video. It would last for days or even weeks. In a way, it has been years that he will be obsessed with something such as Thomas the Train, Cars and Mickey Mouse Clubhouse (movies and toys).

Properly defined – obsession can be any of the three:

a state in which someone thinks about someone or something constantly or frequently especially in a way that is not normal

someone or something that a person thinks about constantly or frequently

an activity that someone is very interested in or spends a lot of time doing

Caregivers, parents, family and even professionals working with people who have autism all recognize a strong element of obsession with those who have autism. It can be obsession with items, ideas or words.

Unusual attachments to toys or objects

Obsessively lines things up or arranges them in a certain order.

Preoccupation with a narrow topic of interest

Spends long periods of time on these narrow interests and attachments

Many of these obsessions and repetitive behaviors can even include the physical including twirling, or handclapping. These behaviors can also be known as self-stimulatory behavior, or “stimming”. Some researchers and clinicians believe that these behaviors may soothe children or teens with autism more than stimulate them.

Now that I lay out that background about this aspect of autism, I wanted to speak about a few of the fixations and obsessions Brody has had over the years.

Thomas

Brody has been obsessed with Thomas the Train since he was around a year old. He fell in love with the toy trains, tracks and videos because of another child who loved Thomas. Years ago, I brought him along with me when I babysat a toddler. Over time, the fixation on Thomas the Train has been as narrow as only playing with a specific few trains and it would have to be metal, not the wooden or plastic ones. To as detailed as taping together Jenga pieces in order to elevate the train tracks he would make. Brody would carry the trains all around. Other times Brody would spend lots of time making tracks that were the length of a room.

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Alphabet and words

Brody displayed his love for the alphabet around two and half years old. Anything from books, toys, to videos, if it related to the alphabet, he wanted it! He may not have been able to call me Mommy at that time (he still rarely ever calls me that) but he could recite the alphabet. Forwards, backwards, out of order, he knew his alphabet. This obsession has continued and, I believe, progressed to his love of words. He will say some words repeatedly. Brody will write lists of words or fill entire notebooks with his favorite words. As the picture proves, he will also write the words when there is no paper available!

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Books

Brody showed an interest in books before he was even 2 years old. As a rambunctious 18 month old, he would hold perfectly still and look through his cardboard books. Brody would attentively listen as I read books to him. Once we moved to some of the longer classic children’s books such as Dr. Seuss, even as a toddler, Brody knew if I skipped pages or did not say all the words on a page. He would silently point to a paragraph or sentences knowing I did not read it out loud. It was his non-verbal way of telling me to do the job right! Now, as an 8 year old, he has his stacks and groups of favorite books. He carries some around and randomly stops and read them. This child of mine, who rarely ever talks unless it is a need, will read (or recite) entire books.10665663_662278053879206_4041122321545421085_n

The main reason I decided to blog about all of these obsessions is firstly to outline what repetitive behaviors can appear like in a person with autism. Secondly but more important, these repetitive behaviors, obsessions and items he fixates about, are such a large part of who Brody is as a person. I am a parent but I am also human and flawed. I can admit that I have been embarrassed for years about this aspect of Brody’s autism. I would always rush to explain Brody’s fixations to guests in our home, people who go to our church, friends, even family. I would try to stop these obsessions, redirect or encourage him to like other things. I was ashamed of the ‘strange’ behavior. I would feel self-conscience of my child as I noticed other children growing out of liking Thomas the Train by 5 years old. As other kids were, watching Avengers cartoons or SpongeBob, Brody still giggled and beamed when watching Mickey Mouse Clubhouse. While I heard about kids Brody’s age reading chapter books, Brody still got a kick out of reading Go Dogs Go for the millionth time. As Brody got older, his differences were so apparent to the rest of the world and it was illustrated by his behaviors and obsessions. It has been gradual but over the past year or so, I have very much embraced and accepted these behaviors. I get on the floor and spread out his books in the order he likes, I am just as energized as ever when I read Green Eggs and Ham and I will always buy Thomas the Train stuff so long as we can afford it! Brody’s autism might create his obsessive and intense attachment and fixation on these items; they can even be what soothe him at times. However, it is motivated by the same exact element as for anyone else – a love and affection! I might need to stop some stimming occasionally and tape some pages of a very used book, but Brody can go on loving things the way he loves them because that’s Brody!!

Jun 29

My little Cub Scout!

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I had a big long post I had in mind for Brody’s birthday. However, his birthdays are so bittersweet for me, and I struggle with so many feelings each year. To help ensure I did not focus on the ‘bitter’ I decided to forego the post and instead I posted a little something on the Facebook page about his birthday.

Since Brody turned 8 years old, the big news is he can now participate in Cub Scouts! The Cub Scout Leader called me the other morning. I was so taken back by the call because I forgot that boys can start Cub Scouts after they turn 8 and with Brody having the specific autism symptoms that he does, it was something that I put out of my mind. As I was talking to the leader, it was as if I was simultaneously going through an emotional rollercoaster. As the conversation began, my first thought was a very bitter, “great, one more thing my kid can’t experience and can’t take part in because he has autism”.  Then my mind went to a sad place when I pictured a group of boys all dressed in their scout uniforms doing activities, socializing and having fun – and yet again – Brody not able to do any of it. As the conversation progressed and I explained to the Cub Scout Leader some of Brody’s limitations, I realized all the other aspects of Brody’s life where he still takes part in experiences and activities but with some adapting.  For years, I never thought Brody would be able to attend church with kids his own age in his appropriate class. He has been going for a while and though many of the spiritual lessons are over his head and he does not comprehend, he is there and hopefully soaking up some aspect of the lessons. As families socialize at special occasions throughout the year, Brody is encouraged and helped to greet cousins, aunts and uncles and be a part of our big family. True, at times, he wants to break away and do his own thing but with some help, he makes better eye contact and is more familiar with extended family. For so long, I would hear about recitals and events schools would have where parents and families attend and watch talents of their children. With hearing so few words from Brody, I feared the day would never come to go to a school event where Brody is participating or displaying a talent. Yet over the past year, we have attended a winter and spring musical event at Brody’s school.  I could name even more but I think my point is coming across! I felt more comfortable as the Cub Scout Leader listed some of the upcoming activities. Some he will be able to go and perhaps some that will be more challenging he will not. He will have to go with his Dad to help and supervise him but then again, how special to have that one-on-one time with his Dad.

In the end, the conversation with the Cub Scout Leader was almost comical when I thought about it later that day. I went from wanting to cry because I worried there was no way Brody can participate in Cub Scouts cause of his severe lack of  communication to excited for him to go to his Den and Pack meetings.

I guess it is just further proof that I need to have more faith in Brody, in his progress and in others. The Cub Scout Leader was more than happy to accommodate any need Brody might have in order to help him participate. I did not feel judged or embarrassed as I spoke about Brody’s autism. I feel this leader will support Brody and our family. I am constantly worried and stressed but more often Brody is capable and others greet him and our situation with love and understanding.

Jun 05

Random Thought

The issue is violence and autism. This topic is very important to me because it affects the way the world and society sees and treats my son and people like him.

There was a recent article in the Journal of Aggression and Violent Behavior, which said there is statistical data to support a link between violence and autism.  I do not approve of publishing studies such as these to the world, especially because in my opinion it is such a loose theory and based on statistics. Perhaps professionals in the mental health industry can put a study such as this into perspective. I believe when it comes to autism studies such as these there needs to be live observations and interviews, not raw numbers-based data. To diagnose a person on the autism spectrum a professional has to observe, go over reports that the patient and/or caregivers have filled out and more. It cannot be based on assumptions or putting circumstances together. Suffice it to say as soon as the information was out there it made me nervous and uncomfortable. For those who do not have a family member or close friend affected by autism, there will be judging or at least a thought planted in the back of someone’s mind that those with autism now or later could harm others.

To look at diary entries or hear about antisocial behaviors of serial killers and mass murders cannot be enough information to diagnose a person who is already dead with autism. On the other hand, if a person who has committed a crime was diagnosed somewhere on the spectrum of autism, it is not reasonable to say that that mental disability or issue was the reason the person committed the crime. Too many other variables exist. There are many mental health issues that share similarities but that does not mean they are the same. A person with antisocial behavior could have Asperger’s but there are many people out there who are schizophrenic or bipolar who share those same symptoms.

Then after the study was published there was the shooting at Isla Vista near University of California, Santa Barbara. Sadly, this came just a couple years after the shooting at Sandy Hook Elementary. Both of these awful crimes were committed by young men that were diagnosed on the autism spectrum. The news of the diagnoses was rushed and reported by the media without context or understanding. Now the general population are hearing the report of people with Asperger’s and/or autism committing these atrocities and it is backed up by a scientifically based study?? These are the circumstances that make me so nervous and scared.

Perhaps this is a strange subject to write about but as a parent of a child with autism I cannot express properly in words the fear I have of how others might treat my son. It is largely a fear of others abusing and bullying my son and since he has few words to express himself I never know about how he is treated. This fear has now widened to others being scared of what my child and those like him. Out of fear also comes prejudice, hatred, cruelty and yes, sometimes violence.

Brody is one of the sweetest kids ever. He has had his moments of aggression as many children with autism (and without) can. But his disability has not defined who he will be now nor when he grows up. As his caregiver, advocate and support I will do all I can to help him remain kind-hearted, gentle and loving as he grows up. Puberty could change him. Being integrated into Jr. High and High School could also have an effect on him that will change him. But we don’t know if or when that will happen. Perhaps this is why those affected by autism talk so much about the importance of autism awareness. Ignorance can spread like wild-fire. Truth and facts get lost by the wayside. In the meantime, as a society we need to support others, not judge, offering help and showing compassion.

 

Apr 27

Autism Awareness

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As April is ending soon, so ends the month of autism awareness. It has caused me to think a lot about autism awareness. What does autism look like in my son? What does the awareness of autism mean to our family? How has this experience affected our family and how does it continue to impact communities and families throughout the world?

I saw all the pics on April 2 posted on social media with so many adults, children and teenagers showing support by wearing blue and pictures of buildings around the world lit up blue. I tried to be more active with everything this month. I participated in writing something for another friend’s blog and I made sure to text family to wear blue on April 2.  We had a charity garage sale event that family organized to help with the cost of Brody’s therapies. I have tried to post a lot more about autism this month and started a Facebook page for my blog.

I suppose my thoughts have been on this so much lately because I try to talk about the subject, share my feelings, and be an advocate and warrior for my son. I want others in my community, local and federal politicians, friends and family to care more. I tell myself, the more I help others see why it is important to care the more kindness, understanding and respect will exist in this world towards children like my son. Over the years, there have been heart-wrenching stories of mean letters given to parents complaining about their ‘loud’ disabled children. Extreme situations where a parent ends their life and the life of their disabled child because they feel they are out of options. Stories in the news about children being turned away from public school because they simply are too much ‘trouble’ to deal with. I hope that people strive to be kind and loving towards others whatever background or disability they have. I could be a part of helping the world be a better place because I know wholeheartedly how important kindness is. I feel like if I keep bugging people, signing petitions, posting, writing politicians and just not letting it go, people will realize that those with autism of all ages need services, research needs to be increased, departments in each state need a bigger budget and more professionals need to be hired, basically more help is needed for people with autism.

However, it is all a strange occurrence because I still go throughout my days as a mom. I am a simple person who lives in a simple house and I find joy in being a mother to my children. I play with Brody, I work with Brody, I take him to therapy, I send him off to school every day and I follow up with him on the prompting of tasks and good behaviors. We cuddle and I tickle him and he echoes my words, saying things like, “I love you Mommy.” Those bright eyes he looks at me with are the same from when he was just a baby. I wish I could lobby in Washington or at our state capital for change, I wish I was a talented speaker who could express what was needed to national organization. Instead, I am working in my home to help Brody talk, learn how to interact with those around him and learn about the world around him. I suppose I am finally realizing that as much as I want to dramatically beat down some doors for change on behalf of my son and others, my work with Brody is too important and there is too much work left to be done.

That is what autism is for me, for my son and my family. As for my community, I constantly hear and meet people who are quite amazing educators, parents and therapists who adore the children they work with and are quite talented with helping those with autism. As April is over, I will continue to bring daily autism awareness because it is still important and necessary. The larger lesson and bigger solution is for everyone to be kind and loving to all they meet!

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Apr 10

Sensory Processing Disorder

As many children on the autism spectrum also have sensory issues and that includes my son, I thought I would provide some information. (If you look at the some of the books on the side of the blog you’ll see Out of Sync Child which is one of the best books about this condition).

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What is Sensory Processing Disorder?

From Brain Balance Center blog http://www.brainbalancecenters.com/blog/2012/04/signs-and-symptoms-of-sensory-processing-disorder/)

Ask parents of kids with learning and behavioral disorders if their children experience problems with sensory processing, and many of them will answer with a resounding “yes”. While it is widely accepted that most children with Autism Spectrum Disorders have trouble integrating sensory input, the fact that children who aren’t on the spectrum also experience these issues to varying degrees is now being examined more closely by the special needs community.  While all children can seem quirky or particular about their likes and dislikes, children with Sensory Processing Disorder (also called Sensory Integration Dysfunction) will be so severely affected by their sensory preferences that it interferes with their normal, everyday functioning. Sensory issues are usually defined as either hypersensitivity (over-responsiveness) or hyposensitivity (under-responsiveness) to sensory stimuli. Below, find some common signs of Sensory Processing Disorder.

What does sensory processing disorder look like?

(http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html)

Tactile Sense: input from the skin receptors about touch, pressure, temperature, pain, and movement of the hairs on the skin.

Signs Of Tactile Dysfunction:

Hypersensitivity To Touch (Tactile Defensiveness)

__ becomes fearful, anxious or aggressive with light or unexpected touch

__ appears fearful of, or avoids standing in close proximity to other people or peers (especially in lines)

__ becomes frightened when touched from behind or by someone/something they can not see (such as under a blanket)

__ complains about having hair brushed; may be very picky about using a particular brush

__ bothered by rough bed sheets (i.e., if old and “bumpy”)

__ avoids group situations for fear of the unexpected touch

__ resists friendly or affectionate touch from anyone besides parents or siblings (and sometimes them too!)

__ dislikes kisses, will “wipe off” place where kissed

__ prefers hugs

__ a raindrop, water from the shower, or wind blowing on the skin may feel like torture and produce adverse and avoidance reactions

__ may overreact to minor cuts, scrapes, and or bug bites

__ avoids touching certain textures of material (blankets, rugs, stuffed animals)

__ refuses to wear new or stiff clothes, clothes with rough textures, turtlenecks, jeans, hats, or belts, etc.

__ avoids using hands for play

__ avoids/dislikes/aversive to “messy play”, i.e., sand, mud, water, glue, glitter, playdoh, slime, shaving cream/funny foam etc.

__ will be distressed by dirty hands and want to wipe or wash them frequently

__ excessively ticklish

__ distressed by seams in socks and may refuse to wear them

__ distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly

__ or, may want to wear long sleeve shirts and long pants year round to avoid having skin exposed

__ distressed about having face washed

__ distressed about having hair, toenails, or fingernails cut

__ resists brushing teeth and is extremely fearful of the dentist

__ is a picky eater, only eating certain tastes and textures; mixed textures tend to be avoided as well as hot or cold foods; resists trying new foods

__ may refuse to walk barefoot on grass or sand

__ may walk on toes only

Hyposensitivity To Touch (Under-Responsive):

__ may crave touch, needs to touch everything and everyone

__ is not aware of being touched/bumped unless done with extreme force or intensity

__ is not bothered by injuries, like cuts and bruises, and shows no distress with shots (may even say they love getting shots!)

__ may not be aware that hands or face are dirty or feel his/her nose running

__ may be self-abusive; pinching, biting, or banging his own head

__ mouths objects excessively

__ frequently hurts other children or pets while playing

__ repeatedly touches surfaces or objects that are soothing (i.e., blanket)

__ seeks out surfaces and textures that provide strong tactile feedback

__ thoroughly enjoys and seeks out messy play

__ craves vibrating or strong sensory input

__ has a preference and craving for excessively spicy, sweet, sour, or salty foods

Poor Tactile Perception And Discrimination:

__ has difficulty with fine motor tasks such as buttoning, zipping, and fastening clothes

__ may not be able to identify which part of their body was touched if they were not looking

__ may be afraid of the dark

__ may be a messy dresser; looks disheveled, does not notice pants are twisted, shirt is half un tucked, shoes are untied, one pant leg is up and one is down, etc.

__ has difficulty using scissors, crayons, or silverware

__ continues to mouth objects to explore them even after age two

__ has difficulty figuring out physical characteristics of objects; shape, size, texture, temperature, weight, etc.

__ may not be able to identify objects by feel, uses vision to help; such as, reaching into backpack or desk to retrieve an item


Vestibular Sense: input from the inner ear about equilibrium, gravitational changes, movement experiences, and position in space.

Signs Of Vestibular Dysfunction:

Hypersensitivity To Movement (Over-Responsive):

__ avoids/dislikes playground equipment; i.e., swings, ladders, slides, or merry-go-rounds

__ prefers sedentary tasks, moves slowly and cautiously, avoids taking risks, and may appear “wimpy”

__ avoids/dislikes elevators and escalators; may prefer sitting while they are on them or, actually get motion sickness from them

__ may physically cling to an adult they trust

__ may appear terrified of falling even when there is no real risk of it

__ afraid of heights, even the height of a curb or step

__ fearful of feet leaving the ground

__ fearful of going up or down stairs or walking on uneven surfaces

__ afraid of being tipped upside down, sideways or backwards; will strongly resist getting hair washed over the sink

__ startles if someone else moves them; i.e., pushing his/her chair closer to the table

__ as an infant, may never have liked baby swings or jumpers

__ may be fearful of, and have difficulty riding a bike, jumping, hopping, or balancing on one foot (especially if eyes are closed)

__ may have disliked being placed on stomach as an infant

__ loses balance easily and may appear clumsy

__ fearful of activities which require good balance

__ avoids rapid or rotating movements

Hyposensitivity To Movement (Under-Responsive):

__ in constant motion, can’t seem to sit still

__ craves fast, spinning, and/or intense movement experiences

__ loves being tossed in the air

__ could spin for hours and never appear to be dizzy

__ loves the fast, intense, and/or scary rides at amusement parks

__ always jumping on furniture, trampolines, spinning in a swivel chair, or getting into upside down positions

__ loves to swing as high as possible and for long periods of time

__ is a “thrill-seeker”; dangerous at times

__ always running, jumping, hopping etc. instead of walking

__ rocks body, shakes leg, or head while sitting

__ likes sudden or quick movements, such as, going over a big bump in the car or on a bike

Poor Muscle Tone And/Or Coordination:

__ has a limp, “floppy” body

__ frequently slumps, lies down, and/or leans head on hand or arm while working at his/her desk

__ difficulty simultaneously lifting head, arms, and legs off the floor while lying on stomach (“superman” position)

__ often sits in a “W sit” position on the floor to stabilize body

__ fatigues easily!

__ compensates for “looseness” by grasping objects tightly

__ difficulty turning doorknobs, handles, opening and closing items

__ difficulty catching him/her self if falling

__ difficulty getting dressed and doing fasteners, zippers, and buttons

__ may have never crawled as an baby

__ has poor body awareness; bumps into things, knocks things over, trips, and/or appears clumsy

__ poor gross motor skills; jumping, catching a ball, jumping jacks, climbing a ladder etc.

__ poor fine motor skills; difficulty using “tools”, such as pencils, silverware, combs, scissors etc.

__ may appear ambidextrous, frequently switching hands for coloring, cutting, writing etc.; does not have an established hand preference/dominance by 4 or 5 years old

__ has difficulty licking an ice cream cone

__ seems to be unsure about how to move body during movement, for example, stepping over something

__ difficulty learning exercise or dance steps


Proprioceptive Sense: input from the muscles and joints about body position, weight, pressure, stretch, movement, and changes in position in space.

Signs Of Proprioceptive Dysfunction:

Sensory Seeking Behaviors:

__ seeks out jumping, bumping, and crashing activities

__ stomps feet when walking

__ kicks his/her feet on floor or chair while sitting at desk/table

__ bites or sucks on fingers and/or frequently cracks his/her knuckles

__ loves to be tightly wrapped in many or weighted blankets, especially at bedtime

__ prefers clothes (and belts, hoods, shoelaces) to be as tight as possible

__ loves/seeks out “squishing” activities

__ enjoys bear hugs

__ excessive banging on/with toys and objects

__ loves “roughhousing” and tackling/wrestling games

__ frequently falls on floor intentionally

__ would jump on a trampoline for hours on end

__ grinds his/her teeth throughout the day

__ loves pushing/pulling/dragging objects

__ loves jumping off furniture or from high places

__ frequently hits, bumps or pushes other children

__ chews on pens, straws, shirt sleeves etc.


 Difficulty With “Grading Of Movement”:

__ misjudges how much to flex and extend muscles during tasks/activities (i.e., putting arms into sleeves or climbing)

__ difficulty regulating pressure when writing/drawing; may be too light to see or so hard the tip of writing utensil breaks

__ written work is messy and he/she often rips the paper when erasing

__ always seems to be breaking objects and toys

__ misjudges the weight of an object, such as a glass of juice, picking it up with too much force sending it flying or spilling, or with too little force and complaining about objects being too heavy

__ may not understand the idea of “heavy” or “light”; would not be able to hold two objects and tell you which weighs more

__ seems to do everything with too much force; i.e., walking, slamming doors, pressing things too hard, slamming objects down

__ plays with animals with too much force, often hurting them


Signs Of Auditory Dysfunction: (no diagnosed hearing problem)

Hypersensitivity To Sounds (Auditory Defensiveness):

__ distracted by sounds not normally noticed by others; i.e., humming of lights or refrigerators, fans, heaters, or clocks ticking

__ fearful of the sound of a flushing toilet (especially in public bathrooms), vacuum, hairdryer, squeaky shoes, or a dog barking

__ started with or distracted by loud or unexpected sounds

__ bothered/distracted by background environmental sounds; i.e., lawn mowing or outside construction

__ frequently asks people to be quiet; i.e., stop making noise, talking, or singing

__ runs away, cries, and/or covers ears with loud or unexpected sounds

__ may refuse to go to movie theaters, parades, skating rinks, musical concerts etc.

__ may decide whether they like certain people by the sound of their voice

Hyposensitivity To Sounds (Under-Registers):

__ often does not respond to verbal cues or to name being called

__ appears to “make noise for noise’s sake”

__ loves excessively loud music or TV

__ seems to have difficulty understanding or remembering what was said

__ appears oblivious to certain sounds

__ appears confused about where a sound is coming from

__ talks self through a task, often out loud

__ had little or no vocalizing or babbling as an infant

__ needs directions repeated often, or will say, “What?” frequently


Signs Of Oral Input Dysfunction:

Hypersensitivity To Oral Input (Oral Defensiveness):

__ picky eater, often with extreme food preferences; i.e., limited repertoire of foods, picky about brands, resistive to trying new foods or restaurants, and may not eat at other people’s houses)

__ may only eat “soft” or pureed foods past 24 months of age

__ may gag with textured foods

__ has difficulty with sucking, chewing, and swallowing; may choke or have a fear of choking

__ resists/refuses/extremely fearful of going to the dentist or having dental work done

__ may only eat hot or cold foods

__ refuses to lick envelopes, stamps, or stickers because of their taste

__ dislikes or complains about toothpaste and mouthwash

__ avoids seasoned, spicy, sweet, sour or salty foods; prefers bland foods

Hyposensitivity To Oral Input (Under-Registers)

__ may lick, taste, or chew on inedible objects

__ prefers foods with intense flavor; i.e., excessively spicy, sweet, sour, or salty

__ excessive drooling past the teething stage

__ frequently chews on hair, shirt, or fingers

__ constantly putting objects in mouth past the toddler years

__ acts as if all foods taste the same

__ can never get enough condiments or seasonings on his/her food

__ loves vibrating toothbrushes and even trips to the dentist


Signs Of Olfactory Dysfunction (Smells):

Hypersensitivity To Smells (Over-Responsive):

__ reacts negatively to, or dislikes smells which do not usually bother, or get noticed, by other people

__ tells other people (or talks about) how bad or funny they smell

__ refuses to eat certain foods because of their smell

__ offended and/or nauseated by bathroom odors or personal hygiene smells

__ bothered/irritated by smell of perfume or cologne

__ bothered by household or cooking smells

__ may refuse to play at someone’s house because of the way it smells

__ decides whether he/she likes someone or some place by the way it smells

Hyposensitivity To Smells (Under-Responsive):

__ has difficulty discriminating unpleasant odors

__ may drink or eat things that are poisonous because they do not notice the noxious smell

__ unable to identify smells from scratch ‘n sniff stickers

__ does not notice odors that others usually complain about

__ fails to notice or ignores unpleasant odors

__ makes excessive use of smelling when introduced to objects, people, or places

__ uses smell to interact with objects


Signs Of Visual Input Dysfunction (No Diagnosed Visual Deficit):

 

Hypersensitivity To Visual Input (Over-Responsiveness)

__ sensitive to bright lights; will squint, cover eyes, cry and/or get headaches from the light

__ has difficulty keeping eyes focused on task/activity he/she is working on for an appropriate amount of time

__ easily distracted by other visual stimuli in the room; i.e., movement, decorations, toys, windows, doorways etc.

__ has difficulty in bright colorful rooms or a dimly lit room

__ rubs his/her eyes, has watery eyes or gets headaches after reading or watching TV

__ avoids eye contact

__ enjoys playing in the dark

Hyposensitivity To Visual Input (Under-Responsive Or Difficulty With Tracking, Discrimination, Or Perception):

__ has difficulty telling the difference between similar printed letters or figures; i.e., p & q, b & d, + and x, or square and rectangle

__ has a hard time seeing the “big picture”; i.e., focuses on the details or patterns within the picture

__ has difficulty locating items among other items; i.e., papers on a desk, clothes in a drawer, items on a grocery shelf, or toys in a bin/toy box

__ often loses place when copying from a book or the chalkboard

__ difficulty controlling eye movement to track and follow moving objects

__ has difficulty telling the difference between different colors, shapes, and sizes

__ often loses his/her place while reading or doing math problems

__ makes reversals in words or letters when copying, or reads words backwards; i.e., “was” for “saw” and “no” for “on” after first grade

__ complains about “seeing double”

__ difficulty finding differences in pictures, words, symbols, or objects

__ difficulty with consistent spacing and size of letters during writing and/or lining up numbers in math problems

__ difficulty with jigsaw puzzles, copying shapes, and/or cutting/tracing along a line

__ tends to write at a slant (up or down hill) on a page

__ confuses left and right

__ fatigues easily with schoolwork

__ difficulty judging spatial relationships in the environment; i.e., bumps into objects/people or missteps on curbs and stairs


Auditory-Language Processing Dysfunction:

__ unable to locate the source of a sound

__ difficulty identifying people’s voices

__ difficulty discriminating between sounds/words; i.e., “dare” and “dear”

__ difficulty filtering out other sounds while trying to pay attention to one person talking

__ bothered by loud, sudden, metallic, or high-pitched sounds

__ difficulty attending to, understanding, and remembering what is said or read; often asks for directions to be repeated and may only be able to understand or follow two sequential directions at a time

__ looks at others to/for reassurance before answering

__ difficulty putting ideas into words (written or verbal)

__ often talks out of turn or “off topic”

__ if not understood, has difficulty re-phrasing; may get frustrated, angry, and give up

__ difficulty reading, especially out loud (may also be dyslexic)

__ difficulty articulating and speaking clearly

__ ability to speak often improves after intense movement


Social, Emotional, Play, And Self-Regulation Dysfunction:

Social:

__ difficulty getting along with peers

__ prefers playing by self with objects or toys rather than with people

__ does not interact reciprocally with peers or adults; hard to have a “meaningful” two-way conversation

__ self-abusive or abusive to others

__ others have a hard time interpreting child’s cues, needs, or emotions

__ does not seek out connections with familiar people

Emotional:

__ difficulty accepting changes in routine (to the point of tantrums)

__ gets easily frustrated

__ often impulsive

__ functions best in small group or individually

__ variable and quickly changing moods; prone to outbursts and tantrums

__ prefers to play on the outside, away from groups, or just be an observer

__ avoids eye contact

__ difficulty appropriately making needs known

Play:

__ difficulty with imitative play (over 10 months)

__ wanders aimlessly without purposeful play or exploration (over 15 months)

__ needs adult guidance to play, difficulty playing independently (over 18 months)

__ participates in repetitive play for hours; i.e., lining up toys cars, blocks, watching one movie over and over etc.

Self-Regulation:

__ excessive irritability, fussiness or colic as an infant

__ can’t calm or soothe self through pacifier, comfort object, or caregiver

__ can’t go from sleeping to awake without distress

__ requires excessive help from caregiver to fall asleep; i.e., rubbing back or head, rocking, long walks, or car rides

Internal  Regulation (The Interoceptive Sense):

__ becoming too hot or too cold sooner than others in the same environments; may not appear to ever get cold/hot, may not be able to maintain body temperature effectively

__ difficulty in extreme temperatures or going from one extreme to another (i.e., winter, summer, going from air conditioning to outside heat, a heated house to the cold outside)

__ respiration that is too fast, too slow, or cannot switch from one to the other easily as the body demands an appropriate respiratory response

__ heart rate that speeds up or slows down too fast or too slow based on the demands imposed on it

__ respiration and heart rate that takes longer than what is expected to slow down during or after exertion or fear

__ severe/several mood swings throughout the day (angry to happy in short periods of time, perhaps without visible cause)

__ unpredictable state of arousal or inability to control arousal level (hyper to lethargic, quickly, vacillating between the two; over stimulated to under stimulated, within hours or days, depending on activity and setting, etc.)

__ frequent constipation or diarrhea, or mixed during the same day or over a few days

__ difficulty with potty training; does not seem to know when he/she has to go (i.e., cannot feel the necessary sensation that bowel or bladder are full

__ unable to regulate thirst; always thirsty, never thirsty, or oscillates back and forth

__ unable to regulate hunger; eats all the time, won’t eat at all, unable to feel full/hungry

__ unable to regulate appetite; has little to no appetite and/or will be “starving” one minute then full two bites later, then back to hungry again (prone to eating disorders and/or failure to thrive)

graph

 

 

 

Mar 25

Music

Okay so I love music. Loved it as long as I can remember and loved all types of music. From the Eagles, Tom Petty and The Beatles that my parents would play around the house growing up to the Cranberries and U2 my older sisters would play – I love it all. Due to my love of music, I strangely hate silence. I want it in the background when possible. Music was one of the first things that my husband and I bonded over when we first started dating. We would listen to music for hours, talk about bands and introduce music to each other. I believe music is something most people love. It speaks to children, teenagers, adults and the elderly. Music can remind us of our youth, a favorite song from that movie we love or help us get up and dance.

Brody LOVES music. My beautiful boy who rarely emits spontaneous communication will go from only saying, “drink please” to singing all the lyrics of an entire song. Not all music mind you, his taste is random and very specific. He has to have grown to obsession before he loves a song. Music seems to connect the parts of his brain where there is a failure to connect. Brody cannot tell me about his day but Brody can sing me a song and I can see the joy it brings to him. Our families listened to him sing La Vie En Rose (the Louis Armstrong version not the French one). I am almost certain most people got a bit teary-eyed as we heard Brody sing because we were able to hear the sound of his voice which is rare.

This is why music therapy is important and beneficial for children with developmental disabilities, especially autism. Music transcends many things, languages, age, race, gender and even ability to communicate. We all love music, we all listen to music and music brings out reactions and emotions. There are those stories out there in the news that I occasionally hear or have the chance to watch where a child, teenager or even adult with autism is able to sing a song. If the story would only be that, we should all stand in amazement and be witnesses to a miracle. However, many times these stories go a step further and some people whom at one point in their lives or still, have a problem expressing themselves or communicating, are able to sing or play instruments with talent that would amaze me if they were typical functioning people. This illustrates my point – music is important and vital to people with autism! It is also backed by decades of scientific studies showing the benefits of music therapy.

Music therapy allows children and teens to increase communication and social skills as well as motor skills while exploring sounds and instruments. Unfortunately, in my wonderful state of Arizona, music therapy was a service whose rates were cut in half years ago in 2009 when the state was having a budget crisis. That money slashed for the budget crisis became permanent. Most insurers do not cover music therapy either. Thus, families are left with only one option – private pay per session. The people who worked as music therapists need to make a living and have degrees and certification in this field. Therefore, when the state cut the rates they would reimburse for music therapy many companies switched to only private pay or therapists stopped working in their chosen field. These days it is near impossible to find music therapy. Private pay is something we cannot afford as we are putting our efforts towards other private therapies.

As Brody’s love of music is constantly weighing on me, I have decided to try to have daily music time. I have printed out lyrics to his favorite songs and put them in a folder. He pulls out the folder daily (and even without music) will sing every word of the songs. We play music, we dance at times and I play new songs for him. I do not have the gift or talent of playing or having musical instruments but I am hoping we can work towards that. In the end, I guess I am attempting to be a self-made (although severely lacking the skills and education) of being my son’s music therapist. This is just what happens for so many parents of those with autism. We do what we must and what we have to, as long as it benefits our child.

To learn more about the details of music therapy in Arizona when the rates were cut – here is an article about the situation from 2009 in the Arizona Republic http://www.azcentral.com/arizonarepublic/local/articles/2009/02/26/20090226therapycut0226.html

Feb 16

A baby and fears

A baby

I am pregnant! My youngest right now is 5 years old. Brody, my little guy with autism will be 8 years old around the time this baby girl arrives. The age gaps of our children are not ideal and by that, I mean what I would have planned it different but as I have learned from parenting and having children, not much is ideal! The decision to have this baby was a difficult one for my husband and I.

I have had a nagging feeling I wanted to write about this subject on this blog. I am reluctant and nervous but then again…maybe not many read my blog so instead I will just think of it as putting these feelings out there in the universe!!

Why is this a difficult subject, well, like everything in my life, my son’s disability of autism affects greatly the decision to have another baby. Women get pregnant every day.

When I had my second and currently youngest son, Brody was a few months shy of 3 years old. At that point, Brody was not diagnosed with autism. Instead, he was only slowly showing more symptoms of autism. With this pregnancy and since even thinking about wanting another child, it was a different story and difference circumstances. I was bringing a child into our family fully comprehending the additional challenges. I have worried and stressed for years when I knew I wanted another baby (though to be fair it is our third and last child).

One of the smaller stresses is that of the judgment of others. I felt the judgment in some conversations and comments made over the years and from things I have read in the online parenting world. I stressed so much that others would judge me. The sentiment was that we should not have another child because we need to deal with the hardships we currently have with Brody. It was tough to think that this is a reason I should not have another child. The way I interpret this attitude is that people do not think Jake and I capable of handling it all. As if we are hanging by a string and barely doing what we should now and if you add another child there is no way we will be able to do the things that we need to for Brody. It is simultaneously insulting our capabilities and the work we do with Brody now.

There is this imaginary scale in my mind. Pros and cons listed on each side. Over the years as I thought about the decision and my husband and I would discuss it, the scale would go back and forth. The weight of each pro and con were change as we talked about the importance or stress of each. It is tough because though some couples may go through the same struggle with deciding, our list would look very different from other couples.

  • The financial stress on our family is the same as others but with the added aspect is the cost of therapies and interventions that could help Brody (many not covered by insurance).
  • Will the baby take away time and care that could be spent on working with Brody. Yes, “working” with my son is something that is done daily and working on goals he needs to achieve which most 7 years do not have to do.
  • Ryan does not have a very healthy mental or physical relationship with his brother and it is difficult for both Ryan and Brody. There is no bond there and getting Brody to make eye contact is difficult let alone plays with Ryan. Another child in our home is a sibling for Ryan to interact and have a relationship with.
  • Another child ups the risks of autism as well as any and all health problems. Already knowing what life is like with a special needs child meant that my husband and I were so nervous about taking on this risk.
  • If Brody’s symptoms of autism do not decrease, it means life-long care by others. The responsibility is my husband and me right now. However, once we pass away or get too old the responsibility falls to Ryan, as he is the only sibling. Another child would alleviate the responsibility being just his alone. This is one of the most depressing thoughts but again, this is something we could not deny but a harsh reality.

These are just a few of the items that were on the pro and con list. The epiphany I had one day was that I could trust the feelings I had that our family was meant to have another child and the fact that I wanted that child. Everything else was full of fear, worry and stress. While raising Brody and trying to meet the challenges that come with it, I am constantly trying to pull myself out of a world of fears and worries and into one of hope. What is real to be is that my heart is big enough for another child and our family is ready for this little one to join our family. As much as I know that, I know even more so that I will never stop trying to help Brody. I will never stop working hard managing his care with the state, researching new therapies and sacrificing time and money to help him improve. Those are the two things I need to always remember. The decision to have another child is no different. I did not want to not have another child cause of this fear or that. It would mean my fears would win and the joy and happiness that a child would bring to our family would never be realized.

So to embrace my goal of overcoming fears I like reading the following quotes:

“There is no illusion greater than fear.” ― Laozi

“Fear is static that prevents me from hearing myself.” – Samuel Butler


“I have learned over the years that when one’s mind is made up, this diminishes fear; knowing what must be done does away with fear.”Rosa Parks
“Pick the day. Enjoy it – to the hilt. The day as it comes. People as they come… The past, I think, has helped me appreciate the present – and I don’t want to spoil any of it by fretting about the future.”Audrey Hepburn

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