What Do You Mean Non-Verbal

When people meet Johnathan for the first time I often have to let them know that Johnathan is non-verbal. Nonverbal is defined as "not involving or using words or speech.'  Many people that hear Johnathan's non-verbal are astonished when they hear Johnathan talking. There is a difference being non-verbal and an autistic person being non-verbal. Autistic people usually are labeled nonverbal because they 'have the ability to speak but lack the ability to use language in a meaningful way.'

One of the biggest signs to us of Johnathan's autism was his use of echolalia. Echolalia is meaningless repetition of another person's spoken words as a symptom of psychiatric disorder. 
Most of Johnathan's speech consist of echolalia and often makes no sense. When people talk to Johnathan he will tend to just repeat back to them what they said to him. Other times he will talk to himself repeating phrases that he has picked up from tv, youtube, or even things that people in his life say a lot. Often we'll hear statements from the shows Kipper and Caillou or the movie Cars. 

Johnathan has many different ways that he chooses to communicate with others. The behavior we are trying to minimize is his whines and grunts. He uses them when he wants something but can not communicate through words. This is tough because there is no way for us to distinguish what exactly he wants. Trying to figure it out can be draining to him and us. Often we will try prompting him by asking him to 'use his words'. Sometimes this works and other times it can cause him to get more agitated because he can't figure out the words he's looking for. When this prompt doesn't work we often will ask him to show us what he wants. He's gotten better about showing us but this only works when he wants something.

When Johnathan was little we taught him the signs for 'more' and 'all done'. To this day we still have him use them when we are trying to determine if he is finished eating or doing an activities. At school and in some of his therapies Johnathan has used pecs (picture cue cards) to communicate. We have used them sparingly at home because Johnathan associates them with school and therapy, not home.    Through the years we've worked a lot with Johnathan on using his words to answer questions. To accomplish this we've learned many strategies to assist him with this skill. Some of the things we do are give him prompting sentence (I want...) and asking simple questions.

For those that may interact with Johnathan here are a few helpful hints to communicate with him:
     1. When talking to him use the least amount of words without a lot of filler words. - Johnathan takes time to process things that are said to him. The simpler the sentence the quicker he's able to process the question.
     2. Avoid the word 'no' . This is a trigger word for Johnathan and he will react badly to the use of this word. We understand how difficult this can be and can not tell you the number of times we accidentally use it. We have also found out that if we use this word with Charles, his brother Johnathan will get upset about that too.
     3. Don't be afraid to ask us what Johnathan is trying to say. We have 12 years of interpreting what he says. We've gotten pretty good at it (especially me) and understand that it can be difficult for someone who's not familiar with Johnathan's speech patterns to understand.
    4. Just because Johnathan's speech is delayed does not mean he doesn't understand what is being said and happening. He is very smart and there is a lot happening in that amazing mind of his. Take time to know him and you might get to share in some of the amazement.

As a parent there are those times when Johnathan says things with complete clarity that totally shocks us. Sometimes these moments make us happy, sometimes makes us emotional, and sometimes just makes us laugh. One of the most memorable times was when Johnathan had gotten in trouble for an inappropriate behavior. I was taking him to his room when he turned back to me and said 'ah come on don't be like that.' As a parent I tried to be the authoritative parent and follow through with the punishment. After getting him to the room though Jim and I couldn't help but laugh at his perfect timing.

There's one other way that Johnathan enjoys communicating with others: singing. Johnathan loves music and loves singing songs that he has heard. His singing ranges from Christmas songs, to Sunday School songs, and a large variety of songs from the radio and movies. He has trigger words that will get him singing a song and he won't stop until he has completed the part he knows from the song. Here is is when he was little singing 'Head, Shoulders, Knees and Toes.’

Hope this post gives you a little bit of insight on Johnathan and the ways he communicates. Taking time to 'know' Johnathan and 'talk' with him however he chooses to really is a wonderful experience.

If you want to learn more about being non-verbal and autistic check out this page on Non-Verbal Autism https://www.verywellhealth.com/what-is-nonverbal-autism-260032

We All Need a Little Therapy

One of the best things you can do for a child with autism is to know what therapy services are out there. Johnathan's life has been filled with several different therapies and I'm thankful we've been able to get these services for our child.

When Johnathan was 2 1/2 when we got our first experience with therapy services. He was able to receive developmental therapy and speech therapy through the early intervention program. His developmental therapy was done in our home. A developmental therapist job is ' evaluating and monitoring children to determine physical and mental development, including social, motor development, self-help, cognitive and language skills.'  We were blessed with the most incredible therapist that happened to be the mother of one of my classmates. (We were lucky that when Charles needed a developmental therapist she was able to service him also). Johnathan also received speech therapy at our local hospital. These therapy lasted until his 3rd birthday and were very beneficial. 

The greatest thing about these therapies is that they are play-based so Johnathan enjoyed these sessions. I was happy that I was able to observe/help with these therapies. This way I was able to do a lot of the same activities with him to further help his development in a variety of areas. 

When Johnathan started the at-risk preschool program in our school district he continued with various therapies. He received a school-based speech therapy that included individual and group speech sessions. He received Occupational therapy to help with his delays in area of fine motor and some gross motor. They also incorporated some music therapy and ABA therapy to help Johnathan calming, following his school schedule, and completing task.

After we had gotten his medical label we were given many resources to look into. One of the places suggested was BDI Playhouse in Naperville which offered speech and occupational therapy services. We went through another set of testing to see if Johnathan qualified for services. Of course he did and we began driving to Naperville every other week for Johnathan to receive an hour of OT and an hour of speech therapy. The speech therapy was similar to the services he had been receiving previously. The OT was much more beneficial to Johnathan because they had a large gym with many different therapy tool. They had a large range of swings (platform, cocoon, log, mesh, and more) that Johnathan loved being on. One of his favorite things was swinging and trying to toss a manipulative in a bucket.   

Another great activity he liked was the trapeze swing with the crash pad.  He would hold on and swing out from. Then he was able to let go and fall down onto the crash pad. The crash pad was like a large pillow. After he would fall into it he liked having the therapist fold it in half so he was wrapped up in it. This fulfilled his sensory needs as the pressure brought him comfort.  

 To help with proper gait when walking they introduced Johnathan to walking on a treadmill. This was interesting to watch because I could observe his walking patterns from different views. This therapy showed where he was having issues that were leading to his balance and stability issues. Just doing this therapy two times he became much more aware of his walking and make corrections for proper gait. 

 Johnathan's biggest sensory issue he faced was 'messy work.' Johnathan didn't like anything to get on his hands. When eating if his hands got any food on them he'd immediately wipe it on his clothes. If at school they were doing painting, gluing a craft, playing with clay, or making a snack Johnathan would usually refuse the activity because he didn't want anything on his hands. Johnathan's worked each session on 'messy play' to try to help him with this sensory issue.

 

We loved BDI and the services that Johnathan received but there was one major problem. The drive there took just over an hour to get there. We'd be at the center 2-3 hours depending if we could get back to back therapies or if we had to wait for the second session an hour. Then we'd get back in the car for another hour drive home. This was during a time when Johnathan was also going to preschool so it made for very long days. While the services were good when he was in a good mood often by the second session (and sometimes even during the first) he would become exhausted from the long day and didn't want to 'work' anymore. Knowing that he'd be starting Kindergarten in the Fall of that year we made the choice to discontinue our services at their center. We are ever grateful for the assistance the therapists gave us and when we had our last sessions they gave me many great resources and activities to continue to do with Johnny.

After we left BDI we took on a lot of trying to fulfill Johnathan's sensory needs ourselves. We set up sensory swings in our basement, got him on a treadmill, and even continued to introduce 'messy play' to his days. Some days we had a great day and others he didn't want to participate in any of those activities. When he was in school more of his needs would be met as he was receiving services in his classroom to. Then the summer would start and we'd be in charge of all therapies because the school does not offer summer services at all. While we could supplement a lot of his sensory issues we knew it was better to have a outside speech services. We tried services through the hospital, services in the home, and services from a pediatric therapy center.  

We were blessed to meet Kelsey who would become a part of our 'family' for 3 years. She worked with Charles and Johnathan on their speech delays. They developed a great bond and Johnathan was always happy to work with her. For two summers we were able to schedule in with her. Sadly when we went to schedule for our 3rd summer we found out there was a waiting list of 40 families before us. 

That's certainly one of the disadvantages we've found when it comes to getting services for our children. There are too many kids in need and not enough offering the services; especially in the small town areas. I can't tell you the number of times I would contact a place to find out they had a huge waiting list, their therapist they had left for a larger city, or sometimes the place had closed due to financial issues. It was so disheartening to get a lead to find out it was a dead end. Even worst - now that Johnathan is over the age of 10 most places won't service him anymore. I understand that they need to keep spaces open for the many, younger clients that are just starting services. Knowing that your child could benefit from more services though that he can not get is HARD!   

It's Just a Label

People often ask me what was it like when Johnathan was given the label of autistic. I always find myself thinking it was just a label. It does not define my child, it does not change the way I feel about him, and he doesn't need cured because it isn't a disease.

Johnathan was 3 years old when he received the educational label of autistic. By the time he received this label we had already seen the signs that he had autism. His repetitive motions, speech delay, and lack of social cues and interaction were easily noticed by us. Still seeing the phrase placed on his IEP was an emotional experience.

What some people may not know is there is a difference between an educational and medical labels of Autism. An educational label is only recognized in the educational system and determines what services and classroom structure is best. To further ensure Johnathan would receive the services he needed not only in the school setting but also in his life we decided to have him tested for a medical diagnosis.

This process was a two step process and was done when he was 4 years old. First we had to do the step one testing. This testing involved the testers meeting Johnathan and mostly just observing him during a play assessment. Not surprising it didn't take them them long to see the same signs we had been observing for quite some time. We scheduled the next test but due to their full schedule we weren't suppose to come back for 2 months. Imagine our surprise when not even a month later we got in due to a cancellation.

Testing number 2 was more intense and involved 4 different assessors working with Johnathan during the testing. The worked in groups of two engaging him in different play assessments. While this was happening the other assessors observed him to. As I sat and watched these assessments I had so many different thoughts going through my head. When he successfully completed a task and wanted to cheer and start to think maybe the autism wasn't as extreme as we were lead to believe. Then I'd watch him not be able to complete an assessment or use unconventional play methods. When this happened I'd plead in my mind that the assessors would see this as a sign that we needed this medical label to ensure he'd receive the needed services. At the end of his testing once again the label of autism was given.

So now we had an educational and medical label of autism and it was time to decide what we would do with this diagnosis. I wish I could say that getting these official labels changed everything for the better. It's not that simple though. Instead it just begins you on a long journey of deciding what services, therapies, and school setting will be the best resources for your child.   

Autism - Different not Less

April is World Autism Month. To celebrate all those Amazing, Unique, Totally Inspiring, Sometimes Mysterious children and adults who define what autism means I have decided to restart my blog. I will post each day talking about my amazing son, Johnathan who sees the weird threw a different lens and invites us in to see it too.

Post #1
Prepared
When my son was diagnosed with Autism I reflected back on the fact that I had been prepared for this. Not because I knew it was a possibility but because I had been blessed to know autism had many foams.

In 2001 I student taught in a classroom with a student who had severe autism. She was mostly non-verbal and delayed in many area. She had her own aide and most of her instruction time was spent outside of the mainstream classroom. The one memory I have of her was she had the greatest smile. While I couldn't understand what her needs were or be a part of her 'world' she still communicated to me a pure happiness she held in her heart.

In 2002-2003 once again I was placed into another student teaching position that included a male student who had Asperger Autism. This time I was given the opportunity to work one on one and in a group with this student multiple times. He certainly opened my eyes to the main characteristics that those with autism possess. He taught me about learning new approaches, learning the definition of different but not less, and that their worlds are amazing if you take time to join them. I still remember his 'quirks' that made my heart smile and the challenges that made me grow as a teacher.

In 2005 I took my first job in a school district working in a resource room classroom setting. God's hand was guiding me to this place as my introduction to the wide spectrum of autism was coming. In the next 3 years I would work side by side, one on one, and daily with students that were on the spectrum. I saw the challenges this students experienced as they learned classroom material, worked to develop friendships with their peers, and dealt with body and hormone changes they didn't understand. I saw the differences that shaped the lives of these students. I worked with a girl student that dealt with many learning challenges that filled her days. I worked with a male student whose learning was often delayed due to his difficulty with social cues. I took classes on autism, researched strategies, and made time to really learn about each of my students. The year I was pregnant with my son I worked as an one-on-one aide for a student with autism. He tested me, taught me, and guided me on the wild world of autism. He stole a piece of my heart and I'm forever thankful for my lessons he gave me.

When my son was diagnosed with autism I knew that my past experiences had all been part of God's plan. While my son, like all those on the spectrum, is like no other child on the spectrum I knew I could join his world. I could 'take his hand' and he'd lead me on his journey through this world. (More about this journey to come in the days/posts ahead - so stay tuned)

The biggest blessing though was not only being able to connect with my son but all my students that have autism. God works in amazing ways and I'm thankful for all those amazing, unique, totally inspiring, sometimes mysterious 'journey guides' I have met and will meet.

Johnathan's Valentine

Despite the fact that I haven't always been big on celebrating Valentine's Day I really enjoyed celebrating it this year. Watching Johnathan 'read' his card and open his presents made it so special. So following in the steps of my fellow blogger Mel I am all about celebrating 'all' holidays big for now on.
First Johnathan looked at his card. It was so funny the sounds he made as you looked at the cover and then opened it up. Unlike most kids he seemed to appreciate his card as much as his gifts.

Next he opened his first gift. It was a little bear. This bear is special because Jim also bought one for me. The fact that Johnathan has quite the collection of stuffed animals from special occasions is very important to me. They not only remind us of special times but they also are great comforts to Johnathan.


After opening his bear Johnathan opened up his next gift. It was the WallE DVD, For those that don't know Johnathan got a WallE doll for Christmas. We have been wanting to get the movie to go with it. Jim couldn't pass it up when looking for gift ideas. Needless to say we have already watched it. Look at the expression on his face!


After he finished opening he layed back in his swing to drink his bottle. He made sure his bear as kept close to keep him company though.


I love that little boy and I'm so happy that he enjoyed his special day. For those you might not of seen the picture - here is Johnathan's 1st Valentine's Day picture:

So Very Blessed

We have faced our share of struggles in our lives and relationship. Yet we have truly been blessed in the love that we share and the amazing little boy that we created. Tonight I just want to share pictures of the two most amazing boys in my life.






Jim & Johnathan - I love you both!!!

15 Months Old

How can it be that my little tiny baby is fifteen months old already? Actually I have been reminded constantly how quickly he is going up. Every day he learns to do something new. He is turning into such a sponge for knowledge. He deeply studies his toys to figure out what he can make them do.

While we are still working on walking with no help he struts around the house with his little walking push toy like he's been walking for months.

He no longer wants to just look at his little push car and has started riding on it.

Giving high fives and tens has been a common thing for him. If he sees your hand up he is going to give you five weather you want it or not. He enjoys throwing his arms up in the air to show me that he's 'so big'.

His other favorite thing is to clap and say 'yeah'. It's so cute and I can't get enough of it.

I guess I have to face it that the 7lb baby is now an active 15 month old that keeps us busy. We are loving every minute of it though.
Jim & Johnathan 4 days old
Jim & Johnathan 15 months old