Monthly Archives: December 2013

Tell me…how does that make you feel?

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I have been asked by many people, sometimes too many people it seems, how we are handling the diagnosis and everyday events since we found out Silas is autistic. Well, let me bring you on an emotional rollercoaster.  Many compare how family members deal with finding out about the diagnosis on the autism spectrum to the stages of grieving. It is amazing, that is exactly how it was…at least for me.

I can honestly tell you after finding out Silas’ diagnosis I experienced a wide range of emotions. Sometimes I thought I was going insane (perhaps I really am but who am I to say if that is indeed fact).  The first emotion, shock, was well-warranted and expected. Deep down I knew the diagnosis but actually hearing it come from a medical professional was tough.

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The next emotion, and this one has been the hardest one thus far, is grief or sadness. I have overcame this emotion so many times but still continue to “revisit” it. At first, all of the hopes and dreams I had for Silas felt like they had been stripped away or taken right out from underneath me. My heart actually hurt for him. There were so many things that I had hoped we could do together that seemed like they would never happen. Of course at the time I did not know how this diagnosis would affect Silas but I assumed the worst. This emotion seemed to linger on for what seemed like forever. After a while though, it subsided and the next emotion hit with a vengeance.

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I was mad. People with “typically developing” children actually really pissed me off. They didn’t know or could even begin to understand the mental and physical pain I felt for my child. When we went places and I saw other parents with their children walking hand-in-hand it hurt. I wanted to be able to do that with Silas instead of having to carry him since he wouldn’t walk in public. I wanted to be able to do so many things like other parents did with their children of the same age. I was just one angry, bitter little woman. Luckily though, this stage didn’t last too long. If it would have lasted any longer I don’t think my marriage could have handled it. I know that since I was so pissed off all the time I tended to take it out on those around me. Robert, that poor soul, was usually the object of my aggression. I didn’t mean to take all of my frustration and emotional pain out on him but I did anyways. It seemed like for a while, we didn’t even speak. He had his moments too but since this is coming from my perspective you get my side. You’re welcome and moving on.

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In the process of grieving the next stage is denial. I skipped right over this one. This incontrovertible reality so rudely imposed on my family by this thing called life was not going anywhere no matter how much I wanted it to. I felt like I could validly say, life’s a bitch.

Loneliness. This stage sucked. Really. Bad. I felt all alone, all the time. I couldn’t talk to people because they didn’t understand what we were experiencing unless they too, had a child like mine. It seemed like I just did not have the time or motivation to contact friends or family for company or even conversation. I didn’t want to talk about what was going on so I just avoided everyone. I was an expert at changing the subject anytime it came up. Now that I am writing this, I actually see where we still are pretty good at being loners. I think this is mostly because we don’t want to put Silas into a situation where he feels uncomfortable and may have a meltdown. I enjoy the solace of just my little family in our comfy home.

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Finally, the best of all the stages…acceptance. I accepted the diagnosis and am learning from it every day. I am Silas’ advocate in life. I am motivated to push him to excel in everything. I want the best people possible working with him. I want nothing but the best for him and will absolutely not settle for anything less, no matter what. I spent almost an entire year trying to get the ABA therapy approved for him with our insurance before it ever finally happened. Those people on the other end of the phone were not fans of me. The people in the Tricare office at the medical clinic on base repeatedly dodged me (though they couldn’t escape my devotion to Silas and his well-being). I sat in the clinic for three hours one time waiting for them to finally come help me when they realized I wasn’t leaving…persistence and patience are my greatest weapons when it comes to Silas. Being able to accept things for how they are now and not how I may want them to be has helped me tremendously. I was able to move forward instead of dwelling on things. I have utilized this time we have had since his diagnosis to always be productive.

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There are days though when things get rough and we do throw ourselves a little pity party. Sometimes we find things that we wish were different and it makes us sad. Sad enough to cry and we do. But we accept things for how they are and move on. It can be very frustrating living in “Silas’ world” in a perpetual state of confusion. Why confusion? I say confusion because it is hard to judge Silas sometimes. Since he doesn’t communicate much with us we have to guess on almost everything. We never really know if he is understanding what we are saying or if he is even paying attention to us. He is the world’s greatest ignorer. I wish I could do that…all the time.

Even though we have our down days, the majority of our days are amazing. Silas has come so far over the past year and a half. He does so many little things that truly leave us in awe. I’m all for living in the moment. Don’t worry about things that may happen. Sure, make plans but if those plans change…that’s okay too. Some people may frown upon what I am about to say but I really don’t care. I let Silas dictate my plans the majority of the time…and I’m okay with that. If I’m reading a book for school and Silas wants to go for a walk, I drop what I am doing and we put on our shoes. I enjoy the spontaneity he brings to my life.  Besides our usual routine and various rituals we do every day sometimes it’s nice for a change of scenery. But here I go rambling…I think I’ve just thought of my next post. I will leave you with this…

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The Creepy Stare

From a young age we noticed Silas would look at things differently than one would expect. For example, he would stand in front of me while looking directly at my head and then drop something behind me so that he could watch it disappear. Often times he would stand at the corner of a wall and drop or throw something around the corner. He would look at something or even us out of the corner of his eye. Lights, small and intricate objects, fans, shadows, and fast moving objects seemed to absolutely fascinate him. This is what I mean by looking out the corner of his eye at things…

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We always kind of assumed by what we were told that Silas was doing these things to get stimuli for his senses. I never questioned the fact that he may be doing these things because he was having difficulty seeing until tonight. We were sitting down eating dinner together and watching The Big Bang Theory. As he has been doing, Silas looked at the t.v. with his head tilted down and eyes up. It’s actually a pretty creepy little look. The first few times he did it I was kind of freaked out by it. Of course he smiles when he does it so he looks like he is evil. I don’t actually have a picture of him doing it but here is an example.

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Tonight, I was truly bothered by him doing this. I got on Google and started doing some research and I am glad that I did. I found a website that may have provided me with some of the best information thus far. Though no one ever mentioned this, apparently optometry has a very large role in Autism Spectrum Disorders. The very first paragraph had me convinced I was right where I was supposed to be. If you or someone you know has a diagnosis or suspects there may be one, check out this website.  http://www.visionhelp.com/vh_autism_09.html#ixzz2ok1wWf1B

This is taken directly from this site.

Presentation of Vision Problems

Children on the autism spectrum typically bring a number of unusual visual behaviors or concerns to the eye doctor.

  • Squints or closes an eye  Yep
  • Stares at certain objects or patterns    Quite often
  • Looks through hands
  • Flaps hands, flicks objects in front of eyes   Sometimes I think he may fly away
  • Looks at objects sideways or with quick glances    All the time
  • Shows sensitivity to light (photophobia)    Yep
  • Becomes confused at changes in flooring or on stairways    He is very unsure
  • Pushes or rubs eyes    Yep
  • Has difficulty making eye contact   Sometimes…it has gotten much better
  • Widens eyes or squints when asked to look    If he will look he does this
  • Bumps into objects     Yep
  • Is fascinated by lights and shadows      Absolutely
  • Touches walls or tables while moving through space     Yes indeed

So Silas does 12/13 items…

Parents, teachers, and other professionals assume that most behaviors seen in autism spectrum disorders are simply a result of the disorder, not a by-product of vision problems. They are astonished to learn that poor eye contact, repetitive stimulatory behaviors, and practically every other behavioral symptom, could be caused by poor fixation, accommodation, or eye teaming abilities.

^^^^WHY DIDN’T SOMEONE TELL ME THIS???^^^^

It looks like I may have to do some schooling on the apparent “autism experts” we have been working with. The website I got this information from said it was “reprinted” so obviously this isn’t new information. Sadly though, this information is not and has not been distributed to the autism community.

I now have a new mission. Part 1, find a specialist for Silas to see. Part 2, get him any and all help he needs no matter what. Part 3, tell everyone I know and even don’t know so that others can do the same thing if needed. This post will surely be continued in the future. For now, I have to get on the search for that specialist…

The Sensory Phenomenon

It is a Saturday morning and I am trying to find things to do with Silas other than watch television. I go over all of the things we have already done and am left with few options since he is quite young. (At the time he was around 6 months) Then it hits me, let’s finger paint! I set up construction paper taped down, a cloth underneath to protect the floor from the sure mess that is about to happen, and bring out the paints. I change Silas and bring him over. He cautiously eyes the set up laid out before him. I of course, am excited to be witnessing the first paint art project.

As I poured the paint onto the paper Silas watches me intensely. I can tell he isn’t quite sure what to think yet. I take his hand, since he doesn’t do it on his own, and dip just the tips of his fingers in the paint. At first he is okay with it and rubs his hand on the paper. He seems to be happy and is trying to figure this stuff out. Once he actually looks at his hand though…he freaks out. Silas is clearly upset with the paint that is on his hand. When I say upset what I mean is he is crying inconsolably, face is red, and he is going into full meltdown mode. Baffled by the events that just happened, I quickly removed him from the situation and cleaned him up. At the time I did not understand what had occurred.

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This was my first indication, though I did not know it at the time, that Silas has Sensory Processing Disorder. The meltdowns happened many more times and in many different situations. I actually did not know what was wrong with Silas for a very long time. Once I finally got him diagnosed I found out what everything meant.

Sensory Processing Disorder, or sometimes called sensory integration, is a condition that exists when sensory signals don’t get organized into appropriate responses. Basically, there is a neurological traffic jam going on that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. This makes it hard to process and act upon information received through the senses. Countless everyday activities and tasks become quite challenging. For Silas, these sensory processing difficulties have disrupted his everyday life.

You may be thinking to yourself…I still don’t quite get what exactly this sensory processing disorder is. Well, to better explain it I have taken a portion of the text from a well-regarded/known website.

What Sensory Processing Disorder looks like

Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. These are the “floppy babies” who worry new parents and the kids who get called “klutz” and “spaz” on the playground. Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed – and inappropriately medicated – for ADHD.

Sensory Processing Disorder is most commonly diagnosed in children, but people who reach adulthood without treatment also experience symptoms and continue to be affected by their inability to accurately and appropriately interpret sensory messages.

These “sensational adults” may have difficulty performing routines and activities involved in work, close relationships, and recreation. Because adults with SPD have struggled for most of their lives, they may also experience depression, underachievement, social isolation, and/or other secondary effects.

Sadly, misdiagnosis is common because many health care professionals are not trained to recognize sensory issues. The Sensory Processing Disorder Foundation is dedicated to researching these issues, educating the public and professionals about their symptoms and treatment, and advocating for those who live with Sensory Processing Disorder and sensory challenges associated with other conditions.

Now, as for Silas…all of the items just mentioned apply to him. He is affected in multiple senses which makes so many different situations difficult for him. He will not wear certain textures, eat certain foods, listen to certain decibels, react to certain lighting, touch certain textures, tell or show me when he is hurt, and until recently he was a major klutz. The whole idea of this disorder was hard for us to grasp at first. I am still learning new things every day.

For a while we were taking him to Occupational Therapy but since his therapist was a major pushover we stopped going. I am looking to get him into a different therapist’s program but until then I keep researching and reading. Hoping to find ways to help him improve. I can’t wait for the day when we can actually make finger paintings, play with playdough, get dirty in the mud, eat any food I present, and actually communicate. He has definitely come a long way thus far but it is a struggle every day. In our house we celebrate the small things. We live life by the moments that make it up. Yes, everyday there is a routine we follow but Silas is a character and keeps us on our toes. I look forward to the many adventures ahead and hope that me journaling our adventure helps people, even slightly, understand.

 This last picture was my latest attempt at getting him to paint during a therapy session. He plays in the paint for a second then immediately wipes it on his shirt. This is progress though. He’s touching the paint. 

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Evaluation Day

August 8, 2012 –  Silas, Robert, and I drive down to Sacramento. I’m a nervous wreck on the verge of having a panic attack for the entire hour drive. There are a million things running through my head and sitting still is absolutely impossible. I have tried to prepare myself for the day ahead of me. I already have filled out too many questionnaires about Silas’ behavior to count. I know what course the appointment we are about to have is going to take. I’m prepared…at least I think.

We get to the office and to my relief there are a ton of toys in the waiting room geared toward children with different abilities. Silas seems to enjoy himself while I fill out, yet again, more paperwork and surveys. Then the psychologist comes to get us. First I go in while Robert stays outside and plays with Silas. The first step in the assessment process is to interview the parents to obtain a social and developmental history and other information about the child’s current level of functioning. Questions are aimed at determining the onset of the disability, such as if we noticed early communication problems, awkward social interactions, unusual play, or hyper- or hypo- sensitivity to sensory stimuli. Information about family history of illness or psychopathology was also obtained during this interview.

The next portion of the appointment Robert and Silas were brought in. The psychologist then performed the following assessment. The Autism Diagnostic Observation Schedule (ADOS) is a standardized assessment that utilizes a variety of structured and unstructured activities to elicit a wide range of behaviors associated with autism spectrum disorders. The ADOS examines the following areas: communication, social interaction, play, imagination, and stereotyped behaviors and restricted interests. This measure uses four different modules that are each individually designed for a particular developmental age and language ability level (from nonverbal to verbally fluent). The activities are meant to be enjoyable for the examinee while providing a standardized context for interactions. After the administration of the ADOS, examiners use their notes of observations collected throughout the evaluation and assign ratings in specific categories based on degree of abnormality. These ratings are used to determine an ADOS classification, which is used in conjunction with other assessment information to determine an overall diagnosis.

There were also other assessments performed and scales used but I am not going to go into detail for them due to brevity. If you would like to know more feel free to look them up.

  • Adaptive Behavior Assessment System-Second Edition
  • Mullen Scales of Early Learning-Visual Receptive Scale

Overall, I felt super sad during the assessments and questionnaires from this appointment. Watching Silas’ interaction and actions was tough. He seemed to be in his own little world. After everything was completed the psychologist went over everything after she had given him scores in each area. She informed us that Silas showed the presence of delays in social interaction, language used in social communication and symbolic or imaginative play prior to 36 months. All of these are criteria of Autism. Silas demonstrated 9 criteria overall and met the requisite diagnostic criteria for Autistic Disorder.

The following is Silas’ actual diagnosis using DSM-IV TR.

Axis I (299.0) Autistic Disorder

(315.32) Mixed Expressive-Receptive Language Disorder

Axis II (319.0)  Intellectual Disability – Severity Unspecified

Words cannot even begin to explain how I felt after hearing this. I knew it wasn’t really the end of the world but to me that is how it felt. I had known for months that what I had just heard confirmation of was true. My mommy instincts had told me from so early on that something wasn’t right. There was so much emotion built up inside of me but I didn’t want to let Silas, or anyone else for that matter, see me cry. I kept it bottled up until I was alone. I honestly didn’t know what to do with myself at that moment.

I finally had something to “call” Silas’ actions and behavior. All of the times he freaked out going into Walmart, eating at restaurants, and anywhere else in public now had validation. People judgingly looking at us because he was having a meltdown. It wasn’t his fault and I knew that, but they didn’t. There were too many people, it was too loud, the lighting wasn’t right…the environment wasn’t right for him. It was sensory overload and at the time I wish I had known that.

I want to let people know how important it is to voice your concerns about your kid(s). If you feel something isn’t right you are probably correct. You know your child better than anyone. Do NOT let doctors dismiss your concerns. If they tell you something that you do not agree with, get a second opinion. I know that if I wouldn’t have spoken up Silas still would be struggling and not have a diagnosis.

 

Always, always have hope.

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If anyone has any questions about the process of what we went through please ask me. I left a great amount of detail out because I could probably write a book about it.

The content of this post will start at the beginning up until the day we got his diagnosis.

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This is Silas’ journey…

When Silas was born, I knew that he would be an amazingly unique child. As most mothers do when they see their child for the first time I immediately fell in love with this alien-like creature. Isn’t it funny that your child is all covered in goo and nasty yuck but you just can’t wait to hold them? From that day on I knew that my life was going to be crazy but exciting. My expectations have definitely held true till this day.

Silas was such a wonderful baby. Once I got him on a sleep schedule he slept better than I did. He was a super happy and playful baby. You could almost always see a smile on his face. As most of you know I took a million pictures of him! As Silas was growing and progressing day-by-day, I began to notice that he was not following the typical timeline for most children. I started to get concerned when he didn’t even try to hold his head up while on his stomach. If I could even get him to stay on his stomach for more than 10 seconds without him freaking out. It took months for him to lay on his stomach and be able to push himself up. Rolling over took even longer. A lot longer than other children. I tried to tell myself that it wasn’t serious. Silas was just taking his time to get to the “milestones” but he would get there.

Silas attended the Child Development Center on base while I was stationed at Barksdale. It was a very depressing environment for me because I saw how right I was about being concerned. I saw how much the other children in his class were doing compared to where he was. The worst part of him going there, at least to me, was having to fill out the age questionnaires. If you don’t know what that is, it is a bunch of questions listed out according to the age of the child and the activities the child should be able to perform. (agesandstages.com) You go through each one and say yes, no, or not able. Filling out those answers made me cry every single time. Having to mark that Silas was not doing something or unable to perform an activity broke my heart with each mark in the circle I made. Unfortunately, almost every single answer was one of those choices. By the end I was one big sobbing, snotty mess.

Those dang questions kept me up so many nights as I laid in bed. All I could think about was what other children Silas’ age were doing and what he wasn’t doing. I knew where he should be at on the milestones but wasn’t even close. I tried my best to take things in stride though. I was very concerned. The doctors on base kept telling me I had nothing to worry about.

Things didn’t really ever progress though. Silas didn’t sit up unsupported until he was 9-10 months old. He started losing his eye contact. He was flapping his arms and legs like crazy. He stared blankly at objects, especially the ceiling fan, for very long periods of time. He did not like the way certain objects, food, and substances felt. He was having reflux, constipation, and reoccurring ear infections. When going to the doctors they just put a band-aid on all of his “symptoms” and would never look into what was actually causing all of these issues. I was just an “overly concerned” mother. Feeding him was a nightmare. He was no fan of solid foods. Silas didn’t crawl until after he was a year old. He said his first word around that time as well. I believe it was da-da. Then we moved here to California thanks to the Air Force.

I thought maybe things would change with a new place to live with new experiences. Lucky for us, he got an amazing pediatrician. She listened to my concerns and suggested I look into possibly having him evaluated for…you guessed it, Autism.

I went through a ridiculous and painful process of having my insurance approve all of the authorizations for speech therapy, occupational therapy, physical therapy, child development specialists, gastroenterology specialist, genetics, neurology, and a psychologist. It took me 6 months to get approval to have the regional center come out and do an initial evaluation. Based off of all of my concerns (more like me saying what I wanted), the case worker recommended we have speech therapy, occupational therapy (OT), physical therapy (PT), and a child development specialist. She seemed very surprised that I had already prepared myself for what was ahead. I had done a lot of research on the internet and read as many things as possible.

We started all of the four services listed above in April 2012. Once a week we would go to speech and then OT. The PT and child development therapist would come to our house. After a few sessions of the PT, Silas just started walking out of nowhere. He was 18 months old by this time. Obviously, since Silas was now fully mobile he no longer required this therapy. The other therapies continued on. The speech therapy seemed to be very productive once we finally got Silas in a routine of going there and not throwing a tantrum the entire hour. The speech therapist was very helpful and knowledgeable. She was able to figure out what worked best for Silas and was actually able to get him to comply with requests. The occupational therapy was the complete opposite. That therapist couldn’t get Silas to listen to her in any way, shape, or form. He ran over her and did whatever he wanted to do. Usually it was me making him do the activities she had planned. Needless to say, we didn’t stay with her very long. The child development specialist only started coming out monthly because apparently I was already doing the activities she would have him do. So after a few visits I told her to stop coming since she was basically just watching Silas and getting paid for it.

We continued on with speech for a few more months but stopped in preparation for the evaluation that would be performed at the M.I.N.D. Institute in Sacramento. It had taken me an entire year to finally get that authorization approved and the date scheduled. I had almost given up hope in trying to get Tricare to stop denying me.

This is when I finally got the “official” diagnosis. All of the therapists and doctors Silas had already seen collectively told me what I was about hear. On August 8, 2012 Silas was diagnosed with Autistic Disorder, Mixed Expressive-Receptive Language Disorder, and Intellectual Disability – Severity Unspecified.

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Autism Speaks is a great resource for information. I will list more sites once I figure out where the heck I put them as well as go into more detail in my next post.