Autism Awareness

Current update on my son:  

Diagnosis in the year 2016: 
*Autism Spectrum Disorder requiring support for both social communication and restrictive repetitive behavior, Level 1.
* Autism Spectrum Disorder, level II, with accompanying language impairment without intellectual disability, requiring substantial support
* Idiopathic/Primary Insomnia
* Receptive language disorder, Expressive language disorder, Social language disorder

We recently met with a Child Psychologist, Speech Pathologist, Occupational Therapist, Pediatrician, Nutritionist, and Social Worker at a clinic that is offered only twice a month for children with different disabilities.  The whole goal of the clinic with these doctors is to assess the child, their needs, make recommendations, and send the report to their current school, primary doctor, and to the family as well.  The Social Worker met with me while my son was with the Speech Pathologist and wanted to know all my concerns, how school is, family life, and talked to me about different resources.  The whole visit lasted for a duration of four hours and that was a little too long for my boy, he fell asleep in between doctors.  Everything I was told by the doctors confirmed what we had already been working with but the doctors also assessed that he should still be receiving occupational therapy and speech, focusing on group peer therapy because of his lack of social communication skills.  They asked why the school had stopped his therapies and I told them because he tested out of his IEP, and that he's average or above average on all tests.  The doctors will send their assessments and reports to the school, but it's up to the school on whether or not they will give my son those services.  The school has their own system of assessment and the doctors can't make the school follow their recommendations, only provide them.  If not, they said that I need to meet with his primary doctor to have her set them up.  I also brought his current assessments from the school, his current 504 Plan, his diagnosis reports from the Psychologist and Psychiatrist, and that was all very helpful.  They also confirmed my thoughts about my son becoming a hermit if I don't try to get him out of the house more and expose him to different people and places.  If it was up to my son, he would never leave my parent's house, and my dad is his safety net.  Even if I tell my son that we have to do this or that, he would always ask his grandpa to watch him while I went out by myself, and of course my dad never says no to him.  They also said that if my son isn't pushed a little more to do different things, then he would most likely need to be in an assisted living facility when he's older - and he could get a job bagging groceries or something like that, because jobs like that would meet his need of not changing his routine and wouldn't push him out of his comfort zone.  The pediatrician said he needs to be pushed enough to leave the house and do different things, and to work on what he likes to do.  I'm very thankful for the whole appointment and it definitely opened my eyes to the different needs of my son and how valuable they are for him.  The pediatrician said, "He's autistic, so he's not outgrowing anything, except his clothes. This is him for the rest of his life."

Right now, my son is also taking a 1mg dose of Melatonin to help him sleep.  I haven't given it to him every night, but I'm sure that it has helped get him into the routine of sleeping because he's been sleeping and waking better than the previous months.  The doctor said that he will most likely need something more than Melatonin, when he's older, but for now we'll stick with what we are doing since it has improved his sleep, mood, and daily activities overall.
I am so thankful for all the doctors, even though we had to travel so much and so far to meet them.  Every visit was worth waking up super early and driving 2.5 - 3 hours.  Thank God that I love waking up early.  I would rather wake up early and drive than spend the night in a hotel.  Driving and watching the sunrise is truly a gift - just beautiful - even more with my son by my side!  My son will also be getting braces in September.
Please pray for him, all children with autism or with any disability, and their famil

FACTS AND STATS ON AUTISM: 
**Taken from National Autism Association 

*Autism now affects 1 in 68 children.
*Currently there is no cure for autism, though with early intervention and treatment, the diverse symptoms related to autism can be greatly improved and in some cases completely overcome.
*Autism impacts the normal development of the brain in the areas of social interaction, communication, and cognitive function.  Individuals with autism typically have difficulties in verbal and non-verbal communication, social interaction, and leisure or play activities.
*Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral ear infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more.

A FEW BEHAVIORS OF CHILDREN WITH AUTISM:
**Taken from Child Mind Institute 

 *Limited eye contact or limited use of gestures to communicate a need or describe something.
*Under the age of 3: failure to respond to his own name, disinterest in giving, sharing, or pointing to objects of interest.
*Older children: Limited understanding of others' emotions or the basic meaning of social relationships.
*Repeating actions and rituals.
*Troubled by changes in daily routine.
*Putting toys in order instead of playing with them.
*Consuming interest in a specific topic or object.
*Children with autism also often have sensory processing problems - unusual sensitivity to sounds, lights, textures or smells.  They may be overwhelmed by too much sensory input, or disturbed uncomfortable because of a lack of sensory input, which they may try t get by bumping into things, and excessively touching and smelling things.


Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. 
ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.
Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. (Autismspeaks.org)

My son was diagnosed at age ten, but we noticed characteristics of autism when he was two years old.  What I struggled the most with was telling others that my son was different, especially his school.  It was very frustrating to talk to his teachers and special education team that his behaviors were because he has sensory issues and that I thought he was autistic.  They wanted me to get him tested for attention deficit/hyperactivity disorder and they always told me, "You could just try him on medication. Just one time and see how it goes."  I never give my son medication and I said that we need to try all other options first.  It wasn't until his grades went from A's and B's, to D's and F's that I finally agreed to have him tested.  It was the psychologist who had asked me if I ever had him tested for autism.  I was surprised that he noticed my son's behaviors while just talking to him, and we were in his office for about ten minutes.  He said that he noticed my son's "awkward" behavior as soon as he walked into his office.  That's true though.  When we are out in public and if I see a friend, I'm always paying more attention to my son than anybody else and I notice his awkward behaviors when he meets someone new.  You have to meet up with my son a few times for him to actually warm up to you.  But never come unexpectedly, otherwise you'll just create anxiety for him.  Call us first.  If you see him in public don't pressure him to talk to you, otherwise he'll get upset and ignore you for the rest of his life.
There has been so many "things" that have got in my way while I just tried to make sure that my son's needs were being met.  First, the school wouldn't test him for autism.  I called the Special Education Department in Devils Lake and the director told me that they wouldn't test him because it wasn't effecting his school work - she called the school herself.  Then, after getting his diagnosis of Autism Spectrum Disorder, I met with his special ed. team and they totally ignored his diagnosis from both psychologist and psychiatrist.  The director of Special Education, from Devils Lake, hadn't even read his reports from the psychiatrist and psychologist before telling me that my son didn't qualify for their autism services.  While still in the meeting, the case manager from the school actually asked the director if she wanted to read the reports of my son's autism diagnosis and the director said, "Yeah, sure. I'm interested."  The school counselor, the case manager for his 504 plan had even said that they weren't going to address the diagnosis but treat it as ADHD because that's what his symptoms are.  I didn't feel that any of that was right.  So as soon as I got home I called a few different places and finally reached an advocate in the state office and he sent me my rights and procedures of assessment - and everything else that I needed to know.  He was so helpful and supporting.  Nobody on his special education team had followed any of the assessment procedures.  I also called the Department of Public Instruction and left a message for the complaint office to call me back.  In the meantime I wrote up a letter to the principal of the school as well as our case manager, explaining that I didn't think they followed procedure and had let the principal know that the director of Special Ed. hadn't even looked at his diagnosis reports, hadn't asked me any questions about my son's behaviors, there was no testing at all during the year, and she didn't even know that he was failing a couple of his classes.  The principal forwarded the letter to the director of Special Education in Devils Lake, she called me and told me that they would set up all the testing for my son and get it all taken care of.  She also blamed the school for not following the assessment procedures and what she was told to do was to go in and deny us services.  Then I received a call back from the DPI complaint office and I let her know what was going on, so she said to see if the director actually does follow-up on testing, and if not to call her back.  The case manager at his school called me back and she blamed the director for the poor assessment.  The case manager received the form from the director and asked his teachers to rate him and that's how they came up with the results.  I said, "That still doesn't make sense because this form says that he has to meet 4 criteria and there are 8 checked here."  The case manager said she just gave it to the director.  After meeting with the team again, to set up all the testing, the case manager still asks the director of Special Education if they treat his symptoms as attention deficit, or as autistic behaviors.  I said, "Autistic, because that's what he has been diagnosed with. ADHD has been ruled out."  It was!  My son had to take a pill that made him want to tell us all his infinite ideas at once - he was off the walls with drawing, cutting, talking, and moving.  My dad thought my son was going to have a heart attack.  The psychologist diagnosed my son with Autism Spectrum Disorder with ADHD unspecified and after meeting with the psychiatrist, the psychiatrist told me that he didn't believe my son was ADHD at all - that his behaviors were all from his autism.  The only way to rule out ADHD was give him medication that children take that have ADHD and see how he reacts to it.  If my son did have ADHD then the medication would calm him down and allow him to focus on one thing, but if he wasn't ADHD it would have the opposite effect on him.  It had the opposite effect on him. 
After all the testing, they came to conclude that my son still didn't qualify for their services.  My son's grades were also improving at that point.  The coordinator from the special education office from Devils Lake told me that his behaviors were pretty normal, from what they see in school.  I always expect professionals to be a little more understanding, especially in education, but not in this situation!  I was praying hard at that point and I told her, "They should be.  School is a routine for my son - he gets up at the same time every day, gets ready the same way every day, gets on the bus the same time every day, he has the same classmates from Pre-K, and has the same classes every hour, every day in school.  He's been coming to this school since he was four years old so he knows that it's all a routine. And I tell my son that there are certain behaviors for certain places.  We go to church to pray.  When we are shopping he needs to stay close to the cart and respect everyone else that is there by staying out of their way - they have their own families they are shopping for and have to get home to.  But when he comes home it's different. You don't see what I see, or know my son the way I do, because you only know what he shows in school."  Then she said, "Well his grades are improving."  I said, "I'm glad they are.  They should be.  He's always been an A and B student."  Then she said, "This doesn't mean that he might not need our services in a year or two."  I said, "I hope he doesn't. I hope he keeps improving."
We have goals in place and I pray for my son every day that he keeps improving.  And if not, we'll get there.  I always thought he was a late bloomer but he's just autistic.  He goes by no time at all except what God gives - a certain pace, for this certain boy, doing a certain thing just for Him.

There have been so many frustrating moments dealing with his school that made me think, "What if I just give up? What if I just let it all be? What would that mean for my son?"  But my guardian angel would always whisper, "What if you don't? It needs to feel right before you give up."  Giving up never felt right, but I was just mentally and emotionally exhausted so I would call and text my family and friends to ask them to pray for me.  
Right now he is on his second sleep study.  The results of the first were surprising.  First it took my son 90 minutes to fall asleep, then his brain was fully awake 11 times every hour during the night, and then he was awake for 30 minutes.  After the first sleep study the doctor said he could prescribe my son a small dose of the medication that is used to sedate people that are epileptic.  My eyes almost popped out of my head.  I said, "I don't want my son taking that!"  He agreed and said that we should avoid giving medication, and suggested we do another sleep study.  He did suggest Melatonin so we are trying Melatonin right now and so far it seems to be working.  He's actually been sleeping within 30-45 minutes, he wakes up and just pops out of bed, and he's in his usual happy mood.  He also hasn't been sleeping during the day, which is what made me worry because he never took naps.  We meet with the sleep doctor again in a couple weeks.  Then in about a month we meet with a team of doctors that includes an occupational therapist and a neurologist!  They will do assessments and recommend a plan for him in school and at home.  I'm excited but I know it's going to be a LONG day for my son.  I started to prepare him for that day a while ago, so he knows it's coming. 
So don't give up if it doesn't feel right and pray! Also, know your rights as a special needs parent. When my son was in first grade I also asked a lady that worked with him when he was 2 years old, to be his advocate.  She came to his IEP meeting with me and got everything going for me that year.
I am forever thankful for all the people that have helped my son reach milestones!

 

These are the first signs that we've noticed with my son. 

When he was a tiny toddler, I was taking all the pictures off the walls for cleaning and painting.

I was putting the frames down on the floor in stacks, where ever I was.  

After I put the first stack down, my son crawled over and put them all in order!

He had the biggest frame right in the center, then biggest to smallest on either side. 

Everything had to have an order and still does.

Autism isn't something that can be outgrown.

My son still has the same behaviors as he did when he was two years old, but only now he's had some experiences to help him cope with things differently.  And he can talk!  

He used to speak a language that only I understood and he would have a fit if someone said a different word than he did.  Every one always looked at me when my son was talking to them because they didn't have a clue to what he was saying.

1 in 68 children have Autism Spectrum Disorder (CDC).  Centers for Disease Control and Prevention 

This is the website that I used after my son was diagnosed. 

They also sent me information at no cost.  Autism Speaks 

I love this video.
The one called My Name Is David too!

"The worse thing you can do is nothing!" Temple Grandin

  
This was taken from a blog post that I had written after my son was diagnosed with Autism Spectrum Disorder requiring support for social communication and restrictive repetitive behavior, level 1.  

"While taking classes for my Associate's degree in Early Childhood Education, it was stressed that to promote early literacy we weren't to use flashcards because it's a memorization process and not an active process of talking and listening.  That wasn't true for my son.  My boy couldn't talk and when he did it was babble.  I never baby-talked to my boy, I never said words in parentese to him because I didn't want his babble to become that, I knew he had a speech delay already.  It was also stressed that we are to tell the children what they can do instead of saying "no" to everything.  That wasn't true for my son either!  I had to shake my head back and forth and tell him, "No!" with a stern face.  He had to know the seriousness of somethings.  I became a pro at facial expressions!  I bought so many flashcards, made my own, and would sit with him on the floor and go through the flashcards with him over and over, and over and over, and over and over!  He eventually caught on to associating the words with the pictures and I'm sure he loved the repetitiveness of doing that.  I also sang words all the time, using different volumes, and he copied all the movements of my mouth.  Then I noticed his mouth was moving as he was saying the words, but his tongue was moving all crazy.  So I started to make sure that he saw my tongue when I talked or sang to him, and sure enough he noticed my tongue moving and copied that as well.  I want to point out that I didn't force my son to talk because I couldn't understand him, I was actually the only person who could understand him.  I wanted him to learn to articulate his words because he already knew their meaning by then, and most importantly because he was ALWAYS talking but nobody understood him except me.  Not being understood was frustrating for him and he showed his frustration by throwing fits, even if one word was misunderstood.  His speech kicked in by the time he was four-years-old, and by then he started Pre-K, and he hasn't stopped talking since then!  Once he can catch onto something, it sticks with him, and he builds on it.  After finally getting the diagnosis of Autism Spectrum Disorder for my boy, I cried.  I sent a text to my mom and told her, she text me back, "Do you feel like crying?  Because I do."  I said, "Not at first, but after I thought about it I did."  I didn't cry because I had a ten year old autistic son that I didn't understand.  I cried because I was happy that somebody actually saw him the way I did and believed me when I told them everything we've been through.  I cried because my son's behavior was no longer a mystery, even though I saw, knew and worked the best I could with his autistic behavior.  Then I got a little angry because I thought of all the times that I had asked his school for help with his autistic behavior but they kept pressuring me to get him tested for ADHD.  Then as soon as the anger built up I began to pray.  I told God that I was extremely happy and angry, but extremely thankful.  I understood how I could feel anger toward my son's school but forgiveness is needed to move forward.

People always tell me, "You are a wonderful mom to him. He is good because of you."  All I can say is that my boy is wonderful to me!  I am good because of him.  It has come to a point for us that I feel like we need some extra intervention in how to help him, so I am even more thankful for the diagnosis.  The psychiatrist told me to read a book by Temple Grandin and that would help me understand autism a little better.  He also told me that we would probably have to do some traveling for any intervention services because there are none around the community we live.  So I ordered Thinking In Pictures: My life with autism by Temple Grandin.  In just the first few chapters I was amazed at the abundance of information on sensory integration, sensory processing, and the autistic brain.
"the autistic frontal cortex has excessive overgrowth much like a thicket of tangled computer cables.  In the normal brain, reading a word and speaking a word are processed in different parts of the brain.  Connecting circuits between these two areas makes it possible to simultaneously process information from both of them.  Both Courchesne and Minshew agree that a basic problem in both autistic and Asperger brains is a failure of the "computer cables" to fully connect together the many different localized brain systems." (Thinking in Pictures, 27)
My son always overreacts or underreacts, even with his voice.  In raising my son I've come to expect big behavior from him.  When he was a toddler he was a stinker!  We couldn't take him into stores, he wouldn't brush his teeth, he would not get his hair cut by the barber, and if we tried any of these things with him then he would have the biggest fit.  He would scream, cry, throw his head back, kick, and hit himself - even bite himself.  There was no way that we could calm him down, except by playing a movie he liked.  Now when you see him today you would never picture him that way, but he was.   He just wanted to be home, in his safe zone, in his comfort zone where he knew everyone, everything, and had a routine.  So it's sensory processing that's a mess for him, but we are always working on it.  A few years ago I got a little upset with the Director of Special Education because she told me, "You, yourself, need a break. Take a night off. A day off."  I'm standing there looking at her, thinking, 'What the heck is she saying?'  There is no way I could take a day or night off from my child.  I'm sure she means relax.  Relaxing to me is when my son is sound asleep, because I know even that is a struggle for him.  It really is!  He has to bury himself under blankets and pillows, he needs it quiet and dark.  Then he finally tells me, after I was bugging him while he was under his mound of blankets and pillows, "Mom, can you be quiet? I can't hear my heartbeat. I need to calm myself down and I know I am when my heartbeat slows down.  Then I get sleepy."  I said, "I'm sorry! You know I love you so much, sometimes I have to bug you when you don't want to be."  I didn't know that he listened to his heartbeat while falling asleep, but I do know that my boy is clear and blunt about things.

A memory that I often think of is when I worked graveshift at the Marina and I called home to tell my dad that I had to work a couple extra hours and asked him to get my boy ready for school.  My dad said, "Ok!"  When I got home the first thing my dad said to me was, "I don't know what happened. He just had a fit and then that was it. I just put him in his room with a movie."  I said, "What the heck. So he's not in school?"  And continued to walk into the hall leading to our rooms.  When I opened his door, all I heard was the big, purple dinosaur Barney singing on the TV and when I walked in there was my whole world laying on the bed with his eyes glued to the TV.  I just laid beside him and tried to cuddle the best I could with him, and that's never much since he doesn't like people touching him.  Then I asked, "What happened?"  But he couldn't tell me.  So I had to ask my dad about every little detail and then I found it.  After taking my boy out of the shower I always wrapped the towel snug around his body with the end of the towel tucked in on the side, but my dad just put the towel over his shoulders and that didn't work for my boy, so he had a fit.  We still have those Barney movies too.  I attempted to throw them, but my boy said no!  So back into the closet they went and still are.  The psychiatrist said that he is not a hoarder nor does he have obsessive compulsive disorder, he's just autistic with collections and there's a difference.

While reading Thinking in Pictures I have to put the book down once in a while, because my brain needs time to take in all the information about autism, how the brain works and in what ways, and all the behavior.  It's really amazing.  Then I tell God, "You trust me with this?"  It's God, so you know you're going to be completely amazed by it - and in total awe of it - and are completely loved by Him through it all.  How do we know it's God' love?  Because His love perseveres and endures.  His love is patient.
My son has learned to adapt to his surroundings, especially in public, even though it may not last long I always tell him, "I'm glad you tried. That's better than not trying!" 
Temple Grandin writes, in Chapter 3 of Thinking in Pictures, "I had no idea at that time that my sensory experiences were different from those of other people."  She's talking about the squeeze machine she invented to help calm her nervous system.  That makes me think of my son also.  Sometimes he'll look at me as if I should have known that about him.  My son is constantly cracking his joints and I'm always saying, "Shh.. stop that boy."  The psychiatrist said that cracking his joints helps calm his nervous system and can also be part of his body awareness.  A couple summers ago he was really bad with it.  We couldn't even sit through a movie without my boy standing up every five to ten seconds to crack all his joints.

The other day my boy said, out of nowhere, "You know what I used to think of when I heard Fort Totten?"  I asked what?  He said, "Tator Tots!"  Then he really laughed.  I asked why.  He said, "Because I didn't know what Fort Totten was. But it sounded like tator tots."  Then I laughed.  In Thinking In Pictures, Temple Grandin writes, "The autistic mind works via these visual associations."  So now I know a little of why all the facial expressions and flashcards worked better for my son.  He also takes everything literally, unless he's experienced it.  Like somebody said it was raining cats and dogs, and when he looked out there were no cats and dogs falling from the sky, so he got upset.  If you say that to him now, he knows that it's just an expression for heavy rain.

A quote from Temple Grandin, "There needs to be a lot more emphasis on what a child can do instead of what he cannot do."  I don't believe that autism has stopped my son from learning, I believe that it brings out everything he can do.  He's an expert on everything he loves - even me!  He always asks me, "Mom, why didn't you do this? Why didn't you eat that? But you always do this."  He loves guns, knives, and boy things like that.  So he makes his own guns, knives, and weapons from cardboard.  So it's even more important that he knows respect - even for his weapons."