Autism and Speech Difficulties

AUTISM AND SPEECH DIFFICULTIES

People with Autism have a hard time communicating verbally or non-verbally.  Some ASD individuals have a full vocabulary and have gone on to do great things, and some individuals are non-verbal adults who have to be monitored constantly due to self-harm.  Autism is a HUGE spectrum.  With that being said, I'm going to touch on one of the hardest things I've had to deal with in our journey.

Jaxon was 2 years old when his Pediatrician wanted him to get his hearing checked and his speech evaluated.  My mom and I thought that Jaxon was just a late talker. No big deal.  Once he was diagnosed and we continued in speech therapy, I realized that teaching my son how to talk and pronounce sounds correctly was a going to be a battle.  Looking back on videos for this post, I forgot that Jaxon was around 5 before he really started talking in words we could understand, even then a lot of it wasn't pronounced correctly.  Before that it was just grunts and noises.   It was like having a 2 year old talking, but my kid was 5 years old.

Now Jaxon is 6 and is really talking up a storm.  He doesn't say many sentences, but he can get his needs across (especially if he wants a snack). Technically being "non-verbal" to me means that you cannot carry on a conversation with someone else.  I classify Jaxon as non-verbal still.  People look at me funny when I say that, because they know he can talk.  Yes he can talk, but you cannot ask him what he did today and get an answer.  He cannot answer "yes" and "no" questions properly most of the time.  He says "okay" when he's not sure how to answer.  That is what makes life hard.  He gets frustrated that he can't say what he wants to say, and I get frustrated because he acts out because he's frustrated.  Vicious circle!  I hope that one day he will be able to talk to me about his day.  But for now, I rely on school staff, church members, and my mom to let me know how his day was or how he acted.

I'm now going to touch on some information about speech difficulties with Autism and how amazing speech therapists are. 

SPEECH PROBLEMS WITH ASD:

• They do not talk at all.
• They grunt, cry, shriek, or make throaty harsh sounds.
• They hum or talk in a musical way.
• They babble with word-like sounds.
• They use foreign sounding "words" or robotic like speech.
• They will parrot or repeat what other people say (echolalia).
• They will use the right phrases and sentences, but with an unexpressive tone of voice.  

COMMON PROBLEMS SPEECH DIFFICULTIES CAUSE: 

• Trouble with conversational skills, which include eye contact and gestures.
• Trouble understanding the meaning of words outside the context where they were learned.
• Reliance on echolalia as a main way to communicate.
• Little understanding of the meaning of words or symbols.
• Lack of creative language.

Because of these issues, a child with ASD must do more than learn how to speak.  They also have to learn to use language to communicate.  They have to learn how to engage in, and hold a conversation.  They have to learn how to tune into both verbal and non-verbal cues from other people (facial expressions, tone of voice, and body language). That is why when they don't make eye contact with you, it's because they are focusing on other aspects of the conversation, and making eye contact will distract them from what's really important.  Do not force eye contact!  I will not force Jaxon to look me in the eye.  He absorbs everything that is said, even when he's pacing around the room!

Due to these problems, individuals with ASD should have regular therapy appointments.  Speech therapy helps greatly, and going to social groups help individuals learn how to be socially aware to what is acceptable in a social setting.  

Speech Therapists have a hard but rewarding job in my opinion.  They are trained to help our kids gain their voice whether that be verbally or with a non-verbal form of communication (Electronic "talker", PECS, sign language or typing).  Speech therapists teach ASD individuals how to pronounce letter sounds, articulate their words well, comprehend verbal and non-verbal communication, understand others' intentions in a range of settings, and initiate communication without being prompted by others.  Speech therapists are the lifeline that these children and adults need.  

2 types of disorders that are common with ASD are:

• Speech Apraxia - difficulty coordinating the use of an individuals tongue, lips, mouth, and jaw to produce clear and consistent speech sounds.  Each time someone with Speech Apraxia says a word, it may sound different which makes it hard on the caregiver to understand them. 
• Echolalia - repetition of noises and phrases that are heard.  Individuals may not be able to  communicate effectively because they struggle to express their own thoughts.  Echolalia may be immediate or delayed.  Sometimes when it is delayed, the individual is thought to have expressive language, when in reality, they are mimicing something they could've heard a month ago.

There is a book I read a while ago called Life Animated  by Ron Suskind that really paints a picture of Echolalia and Autism.  It is such a great read!  They turned the book into a movie and it was nominated for an Oscar.  Here are a couple links to his websites so you can read a bit about it.  I suggest that you read it because it is fabulous! 

http://lifeanimated.net/
http://ronsuskind.com/books/life-animated/

Back to Jaxon!  Here are a couple of videos of him!  One was before he was talking and he was just making noises, and the other is when his words are coming out, but they aren't fully understandable yet.

This was 2014.  He was 3 1/2 and didn't have any words.

2015 - he was almost 5 and starting to form words.

 

Let's talk about STIMMING

WHAT IS STIMMING?

Stimming is commonly associated with Autism.  Stimming or stim, is short for self-stimulation. Stimming refers to specific behaviors such as repetition of words, sounds, and phrases, spinning, hand flapping, and rocking.  Stimming is an adaptive behavior which can help a person with ASD focus, cope, engage, etc.  It also helps with self-regulation and self-calming.  A lot of autistic people stim because they are excited, happy, anxious, overwhelmed, or it feels comforting to them.   

WHY DO THEY STIM?

• Stimming can help block out excess sensory input which can cause sensory overload.
• Stimming helps provide EXTRA sensory input when needed.
• Stimming helps with the management of emotions.  Positive and negative emotions may trigger a burst of stimming.
• SOME stims serve the purpose of soothing and comforting oneself. 

 Stimming can be very subtle and also a part of most people's behavior patterns.  If you have ever tapped a pencil, bit your nails, twirled your hair, tapped your toes, or bounced your leg up and down, you have stimmed.  Those kind of stims are "normal" and don't bother others.  A lot of people with ASD have stims that have been deemed culturally unacceptable.  "Scary stims" include: screaming, hitting oneself, and headbanging.  These stims are scary to see, and cannot be helped when an autistic person is doing them.  They are coping in the best way that they know how.

A lot of parents try to make their children stop stimming.  Doing that does more harm than good.  Stimming helps them regulate themselves and self-soothe.  Most of the time, when they don't stim, their actions are more distracting than the stim itself.  I know that if Jaxon had a lot of stimming issues, we would get a lot of stares and I would feel embarassed.  But even then, I  couldn't live with myself if I discouraged him to stop stimming.  I couldn't  imagine how it would feel to be told to stop doing something that helped you feel better.

When Jaxon was younger, he stimmed a lot.  He would flap his hands, tip toe constantly, grunt, screech, line up toys, and stare at his fingers out of the corners of his eyes.  At his young age, a lot of it I thought was him just being excited.  Of course once I researched Autism and watched videos, I realized that he has been stimming from a very young age.  Now that Jaxon is older, his stimming has changed.  I see him tip toe occasionally, and he likes to make a screeching sound sometimes, but mainly he stims by drawing.  He regulates and soothes himself by sitting at the table and drawing paper towel machines, maps of the world, grocery stores, and tons of other things.

 

This was Jaxon in 2012.  He was so little, but you can see the tip toeing and the flapping.

 By now, he was diagnosed with Autism and I was more educated.  I just love his little face and how excited he was to see the kids playing.

This is a more recent stim.  He would visually stim by turning the light on and off over and over.

This is how Jaxon stims now.  He draws constantly, and sometimes, I feel like it has become an obsession as well as a stim.

 Here is how Jaxon stims now. He will line the floors and walls with papers he has written or drawn!

It's the Final Countdown!!!

SCHOOL IS STARTING SOON!!!!!!!!!

Jaxon will be starting school this coming Thursday.  He will be in 1st grade!  How did it pass by so fast?  As any parent, I'm always excited for the new school year.  But as an Autism parent, I also have a lot of fear.  How will the teacher be with Jaxon and his needs?  Will his aide be able to guide him the way he needs, or will his behaviors become worse?  Will his new classmates accept him?  Will Jaxon need to be removed from his classroom due to his aggression?  As a parent of an autistic child, the unknown is paralyzing.  I'm a planner and a control freak.  I like to have my lists and the things I need to get accomplished.  I like when things go the way that I think they should.  I try to be as organized as I can when it comes to Jaxon.  Unfortunately, I can't control a lot of the school setting.  I've given my input at the IEP meetings and have had numerous conversations via e-mail.  That's all I can really do.  I'm giving them my sweet child, to educate and mold.  I'm letting Jaxon go into a setting that still makes me uncomfortable sometimes.  If I could shrink myself down and be a fly on the wall, I would be there all day every day.  

I know a lot of it is unnecessary worry.  I know that nobody can love Jaxon and take care of him like I do.  Nobody else knows Jaxon's quirks and how to calm him the way I do.  I can inform the school staff, but I still feel like Jaxon's needs won't be met the way they need to.  I could be completely wrong about this year, and I pray that I am.  I always hope for a great school year.  I just hate that I let one school year dictate how I feel about the years to come.  That is one thing that I will have to get over on my own.  

To ease Jaxon into the new changes that are coming up, I've been talking to him about the new school year.  We've talked about his teacher, his aide, and his new classmates.  We've looked at their pictures, and worked on their names.  I am fortunate in the fact that we live in a small town.  The school is small, and most of the staff know Jaxon. (I'm sure they all know about his bathroom obsession lol)  I always hope that this small community will rally behind our young ones with disabilities and help them grow.

So this year I printed up a pretty good size list of ways that Jaxon can be accommodated in the classroom as well as throughout the school.  Last year I only gave one to his general education teacher.  This year most of the staff that I know will be working with Jaxon will receive one.  Most of the staff has known Jaxon since he was 3.  They all love him and he loves them.  But even then, some people still don't know how to handle Jaxon.  



At open house, I will be giving his general education teacher one of my print outs and a copy of Jaxon's IEP.  His IEP includes a list of sensory items that Jaxon will have in the classroom, so I have all of those in a bin as well.  Those are two things I wish I would've done last year for sure! Jaxon's IEP has to be followed, even on the first day of school.  His teacher needs to be familiar with it! I will also stress to her that daily communication is a must!  Jaxon can't come home and tell me about his day, so I am relying on his teacher to communicate with me.  Nothing is harder than wondering how your autistic child's day at school was because you weren't given a note for that day or even weeks in some cases.  I've learned a lot of things since last year and I'm glad that I am more prepared this year.

*Did you know that Jaxon has become very sensitive to sounds and sunlight over the summer to the point that he needs sunglasses anytime he is outside and his noise cancelling headphones almost constantly? Were you aware that Jaxon's aggression has gotten so bad that we are now going to start ABA therapy?  Did you know that Jaxon loves a schedule, and when it is changed because of an assembly or a school party, it makes him anxious?  When Jaxon is pacing the room and humming what do you do?  If they don't know, they will soon.*

I want this year to go smoothly, and I know that I have done everything I can think of to make that happen.  My mom is going to be taking him up to the school the 3 days prior to school starting.  It will be quiet and calm, so Jaxon will be able to wonder around and get reacquainted with the building.  I think most of us ASD parents know how chaotic open house night can be!  Hopefully these quiet tours will help.

Now we will anxiously wait and see how the first few days go.  Wish us luck!!!!

Communication Device

This morning Jaxon and I were sitting on the couch watching T.V. and he's playing with his communication device.  I watched him and remembered how not too long ago, Jaxon needed that to be able to communicate to me. I remember a time when Jaxon could do nothing but grunt and make noises.  This device helped him learn how to say words and help him learn how to form a sentence.

The ability to communicate is something that we all take for granted.  We communicate daily at work, school, church, at the grocery store.  Families that have a loved one with ASD knows how it is to have someone who cannot verbally communicate how they feel or what they want. A lot of these kids start out pointing and grunting.  That is very hard on the child and the family when wants and needs cannot be expressed and reciprocated.  Communication devices bridge that gap and give these kids a voice.

When Jaxon turned 2, we had his yearly check-up.  His Pediatrician asked all sorts of questions: Is he stacking blocks?  How many words is he saying?  When my answer to those were "no" and "none" she decided we should have his hearing checked and have a consultation with a Speech Therapist.

We had his hearing checked in the Lebanon Clinic first, and then we were sent to Springfield so Jaxon could be sedated and have them checked again because what 2 year old wants to sit still for a hearing test.  BORING!!!  The Audiologist in Springfield said that his hearing was fine.  

After that he attended Speech Therapy and eventually Occupational Therapy and still does to this day.  After Jaxon was diagnosed with Autism, we were set up with a company that provided communication devices to families. We went in and they let Jaxon play on one and we decided that it would be a good fit for him.  It took a while for the device to be sent, but ever since we've received it, Jaxon has used it.  Of course now Jaxon has enough verbalization that he doesn't need to use it, so he enjoys playing on it.

Communication devices are the newer version of PECS (Picture Exchange Communication System)  which is where you place pictures in a line or on a board to make a sentence or make your needs known.  Either way is a great way for ASD individuals to communicate.  We were fortunate enough to receive a device.

Jaxon just plays on his right now, but you can see how it works.  Jaxon's Speech therapist had buttons on there for educational purposes.  He has learned a lot with this device.  

Here is a video of Jaxon playing with his device this morning.  It has so many options with what you can put on there.  I have a page that he can push and it will teach him the planets, the holidays, the types of weather, etc.  It is amazing!

Of course you can see that he learned how to make the device repeat over and over!

THIS KID!

 Jaxon has always had a goofy personality.  I'm so glad that now I can share it with all of you!!!!!

Jaxon has decided to set up his iPad and communication device as a computer lab.  
He is so ready for school!

Blending in with your surroundings skill level:  MASTER

*Hears belly laughing in the bathroom*

Me: Jaxon, what are you doing?

Jaxon:  Checking out my bell button. Take a picture!!!

This kid is a mess!

Autism 101

AUTISM

1 in 68 children have Autism Spectrum Disorder (ASD).

It is one of the fastest growing developmental disorders in the US and is the least funded.

Autism costs a family $60,000 a year on average.

Boys are nearly 5 times more likely than girls to have Autism.

Autism has no race preference, does not favor one region more than another, and knows no socioeconomic status.

Autism varies from person to person.  When you've met one person with Autism, you have met one person with Autism. You cannot assume because you know one person, that you will understand how another person views their own world.

40% of children with Autism do not speak.

25-30% of them have some words at 12-18 months and lose them.  Others might speak, but not until later in childhood.

It is a bio-neurological developmental disability that generally appears before age 3, sometimes later in life if the person is "high-functioning".

There is still no link to a cause of Autism.  Many people have different opinions including:  vaccines, chemicals in our foods, or environmental causes. My opinion is that my son was born this way.  This is the way that God made him.  He is perfect and everyone else with ASD is perfect the way that they are.

Autism impacts the normal development of the brain in areas of social interaction, communication skills, and cognitive function.

Individuals with ASD have difficulties in verbal and non-verbal communication as well as leisure and play activities.  They don't respond to social cues (emotions and reading between the lines).

They often suffers from numerous additional medical conditions which may include:  allergies, Asthma, bowel disease, Epilepsy, Fragile X, persistent viral infections, feeding disorders, sensory integration disorders, sleeping disorders, immune and autoimmune disorders, neuro inflammation, gastrointestinal/digestion disorders, ADHD, OCD, PANDAS, Anxiety, Bipolar Disorder, and Tourette Syndrome.

Most people with ASD flourish with structure and routine.

They also have special interests that make each one of them unique.

Autism does not affect life expectancy, however research has shown that the mortality risk among individuals with Autism is twice as high as the general population.  That is mostly due to drowning and other accidents.

Some of the therapies that a person with ASD might utilize are:  Speech Therapy, Occupational Therapy, Play Therapy, Applied Behavioral Analysis (ABA), Feeding Therapy, Play Therapy, Hippotherapy (equine therapy), Music Therapy, and Social Groups.

There is no cure for Autism.  With early intervention and treatment, the symptoms related to Autism can be greatly improved and in some cases, completely overcome.

Meet Jaxon and I

Jaxon is a goofball!

His eyes are the best!

So much love!!!

He laughed and laughed when he saw this!

I HATE Autism

Hey guys!!!

I was hoping that my first post would be a happy one, but unfortunately it will not.  Tonight was hard.  Tonight was the last night of Vacation Bible School at our church.  Once we got there, Jaxon was all out of sorts. Jaxon finally told me, "go home" so my mom took him to the car so they could go home and I could stay.  About a minute later I get a phone call from my mom needing my help in the parking lot.  She was getting Jaxon in the car, and he slipped out of her grip and headed toward the road.  My mom was able to grab him, but the result was both of them falling over the curb.  My poor mom was bleeding when I got to the car.  She and Jaxon are ok, but it is so scary when he gets out of our grip.  He has been so unpredictable lately, that I honestly don't know if he would run into the road or not. 

I love my son with every fiber of my being.  I love his smile, his voice, his goofiness.  In saying that I will also say that I HATE AUTISM!  I hate the fact that I have to fight Autism so I can take my son to do everyday things like go to the grocery store.  My son shouldn't have to wear noise cancelling headphones everywhere just so he can filter out all of the stimulation.  My son shouldn't have multiple meltdowns daily because of reasons I'm still trying to figure out.  My son shouldn't struggle at school because he's not getting his needs met.  My son shouldn't hit me over and over and over because he can't get his emotions out. Autism is what I have to fight daily and it is the biggest struggle I have ever had.

I hate Autism.  I love my son.  My son has Autism.  It is very hard to keep your composure while your son is hitting you.  It is hard because I just want to make him stop, but giving him that attention will make it worse.  So I stand there and take it.  It's heartbreaking to flinch when he runs up to me because I don't know if he will hit me or not.  Autism sucks. 

I know that Jaxon will improve over time and we are just in a rough patch.  I know that I am in the valley and praying daily for God to look after us and to help Jaxon.  And I know that one day, we will be standing on top of that mountain victorious because we persisted.