Stimming

I have grown to love the “quirky” things that Silas does. Each day I learn something new about the things that he does and why he does them. The majority of these behaviors are called stimming. I was going to explain what that is but I found two websites that explained it perfectly.

There is a slang word that people in the autism community use to describe the noises and movements they sometimes make to feel calmer. It also covers habits such as nail-biting.

What is this word?
It’s stimming, short for the medical term self-stimulatory behaviours – a real mouthful. Stimming might be rocking, head banging, repeatedly feeling textures or squealing. You’ll probably have seen this in people with Autism Spectrum Disorder (ASD) but not really wanted to ask about it. It is a term used widely in the ASD community.

Why do people with autism stim?
There are many reasons. The world-renowned animal behaviourist Temple Grandin is on the spectrum and says most people stim simply because it feels good.

In Autism Digest in 2011, she said dribbling sand through her fingers was a feeling that used to calm her. Referring to her own childhood experiences, she said that stimming “may counteract an overwhelming sensory environment, or alleviate the high levels of internal anxiety these kids typically feel every day”. A real life example is that it could stop sounds hurting your ears.
As an adult, Grandin seems to control the sensory overload a little better but says some people need to stim to “refocus and realign their systems”.

UK campaigner Robyn Steward says she relaxes her wrists and lets her hands flap up and down when she’s happy or anxious. A public speaker with autism, Stewart thinks that for her, it’s the rhythmic nature of stimming that does the trick. “When babies don’t sleep well, you put them in the car, in their car seat, and you drive about. They are lulled to sleep by the sound and the movement because they feel safe.” The repetitive sound, she says, is a good example of a stim outside of the context of autism.

So, in short, stimming is often done to block unwanted sounds or visuals through distraction, or to bring focus. Not all noises and movement are stims – these have a purpose. Tics, for instance, are purposeless.

Is it just people on the autism spectrum who stim?
stimming
No. Neurotypicals, or people without autism (you, maybe?), also self-stimulate; nail biting, hair twirling and foot tapping all count as stims. NTs, as they’re known for short, can usually control their stims and tend to do ones that are considered more acceptable in public than those done by people with autism. There are blogs and web forums where people on the spectrum discuss stimming, compare stims and discuss public reactions.

Should stimming be stopped?
Welcome to Controversyville, come in, take a seat.
“Quiet hands” is a gentle request you might hear from teachers or parents in the US encouraging children to stop stimming. The consensus between autism experts now seems to favour not intervening unless it’s causing harm, no matter that it may look a bit different or cause others to feel uncomfortable.

On the Talk About Autism forum, a contributor called Claire (who is on the spectrum herself), writes: “[Stopping stims is] a bit like ‘teaching’ someone who is blind not to feel things in a room to find out where they are because we don’t like them putting their arms and hands out to do so.
“It has a purpose. Stopping it in order to make others feel better seems bizarre to me.”

Source

Stereotypic Behaviors Related to Senses
• Visual staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping
• Auditory tapping ears, snapping fingers, making vocal sounds
• Tactile rubbing the skin with one’s hands or with another object, scratching
• Vestibular rocking front to back, rocking side-to-side
• Taste placing body parts or objects in one’s mouth, licking objects
• Smell smelling objects, sniffing people

Researchers have suggested various reasons for why a person may engage in stereotypic behaviors. One set of theories suggests that these behaviors provide the person with sensory stimulation (i.e., the person’s sense is hyposensitive). Due to some dysfunctional system in the brain or periphery, the body craves stimulation; and thus, the person engages in these behaviors to excite or arouse the nervous system. One specific theory states that these behaviors release beta-endorphins in the body (endogeneous opiate-like substances) and provides the person with some form of internal pleasure.

Another set of theories states that these behaviors are exhibited to calm a person (i.e., the person’s sense is hypersensitive). That is, the environment is too stimulating and the person is in a state of sensory-overload. As a result, the individual engages in these behaviors to block-out the over-stimulating environment; and his/her attention becomes focused inwardly.

Researchers have also shown that stereotypic behaviors interfere with attention and learning. Interestingly, these behaviors are often effective positive reinforcers if a person is allowed to engage in these behaviors after completing a task.

Source

After all of the research I have done on stimming and the controversial debate on whether or not to stop those behaviors I have decided that I am not going to force Silas to stop. There is a reason that he does these things and hopefully one day he will be able to articulate why he does. As he grows older I will be able to mold some of the behaviors, like screeching and his over the top hand flapping, into behaviors that he will not get made fun of at school and in public. But I will never force him to stop doing things that make him feel better, calmer, and aid him in coping with situations. The next opportunity I have to write again I will cover some of the stimming behaviors that Silas indulges in.

Genius at Work

I know Silas is smarter than he is leading everyone to believe. Every now and then he will give us a glimpse into his mind when he does or says certain things. He hageniuss us all figured out and knows how to manipulate us into getting what he wants. If he could fully communicate his thoughts I know I would be in deep trouble. This little booger is quite intelligent for his age.

Today at daycare they were doing their typical “classroom time” where they were working on reading and pronouncing words. Usually during this time Silas is doing his own thing but sitting in the same area as all of the other kids. Today, the older girls (4 & 5) were having trouble with some of the words. In particular there were three of them. The daycare provider said that Silas walked up and said what the words were that no one else could figure out. Whoa!! Super surprising!

She said that everyone was cheering and Silas just smiled and walked off like “duh”. Love it!Songs-for-Autism-Tuned-in-to-Learning

On another more humorous note, any time Silas hears music that is not Christina Perri, Storybots, or Mozart he will say “Bye bye Lil’ Wayne. See ya!” Apparently everything is rap to him. We play every single genre of music and every time it is the same thing. At least he has good taste in music; Robert and I both really enjoy classical music.

Rambling


hi-my-name-isFamily Visit

Over the past two weeks, Silas has not had any ABA therapy sessions. This is due to my mom, aunt, and both nephews coming for a visit and then Silas got an ear infection in both ears plus a terrible cold.

Before my family members arrived, I had the therapists help me work with Silas so that he could identify all of our family. I printed out pictures of each of them then we ran the cards with his PECS program. I worked with some social stories to help Silas understand that he would have some visitors coming into his home and space. When everyone arrived I was not sure how Silas would react. The first ones in the door were my two nephews. I said hi + names and Silas repeated me without yelling and running to his room. Hooray!

Silas did exceptionally well the entire visit. He was thrown out of his normal routine and had different people around him 24/7 and it did not even seem to faze him. Overall, he interacted and played with everyone with almost no problems at all. I was super proud of him.

Back to Therapy

This week we have resumed therapy and so far it has gone alright so far. Silas is being stubborn and not wanting to do certain programs. He thinks that if he keeps running to his room and laying on his bed or the floor that he will not have to do his work. I ended up having to shut all of the bedroom and bathroom doors so he cannot escape the therapists. Plus I got tired of having to go pick him up and bring him back. We know that he can do everything that is being asked of him so he cannot get away with not doing things. My patience level is running low though because of the whining and screaming. I can understand where he is coming from though because I would not want to have to come home and be commanded and directed to do things. Hopefully the rest of the week goes well. We shall see.

SchoolHouseSchool

On a different note, Robert and I visited the school offering to enroll Silas a few weeks ago. I was pretty impressed with the layout and overall impression of the main teacher. I think that going to school in this type of setting would be very beneficial for Silas. The classroom is designed specifically for special needs children, ranging from children on the spectrum to other disorders and disabilities. The staff are the best trained in the district and have loads of experience.

The school is offering Silas a class from 12:00-3:00 Monday thru Friday. I think I may be able to make this work with our schedules depending on if I am allowed to change the hours I work. My idea is that I will work the hours of 1:00 pm- 10:00 pm. This is eight hours with an hour for lunch. Working these hours would not only work for Silas to go to school but my superiors would be able to get more out of me because I would be working a full day instead of leaving after lunch like I do now for therapy.

So, if I am allowed to do that I would pull Silas out of his current daycare (which costs $155 per week) and he would stay home with me in the mornings. I would drop him off at school at 12:00 and go into work. Robert gets out of class at 2:30 pm and could pick Silas up from school. Then they do ABA therapy and whatever else. In my mind, this sounds like a plan. Only to put that into action! I am super excited and really hope that we can all make this work out.

 

Extinction

It has been a while since I have really taken the time to write a new post and a lot has been going on. Silas is really progressing with his speech. We do have a long way to go but every day he is surprising us with new words and communication skills. In the last few meetings with his ABA therapist and case worker we have been discussing some of his “behaviors.”

An example of this, which is particularly annoying, is his obsession with repetitive requests. Here is a scenario of this happening…

We are reading Green Eggs and Ham. Silas is sitting next to me while I start on the first page. He immediately starts flipping through the pages before I can get any words out until he gets to the last page. He then looks at me and says “The end.” He will keep repeating this until I say it back, sometimes until I say in the tone he wants. Once I do finally say it back to him he will then say “All done.” and the same thing continues. He will do this over and over and over again. Once he is done with the book we are currently on he runs and gets another one just to repeat what we just did. This goes on for extended periods of time until I end up taking the books from him. We sometimes fight over this because I refuse to repeat him and just ignore him. He will do practically anything he can to get me to comply with what he wants.

After discussing this with the case worker I was instructed to put away all of his books. I did this on May 13th. Until we are ready to combat Silas on this issue as a unit (family, daycare, and therapists) his books will remain put up. The case worker described how the process of breaking this habit will go and I am not excited in the least bit. The process is called extinction and we will use this to break all of these “bad” habits which we have been discussing in our meetings.

extinction

An extinction procedure is essentially an intervention that makes a behavior occur less often or stop occurring altogether. Extinction procedures apply the “principle of extinction” which proposes that because behaviors occur for a reason – they get us things we want – if we stop getting what we want after we engage in a certain behavior then that behavior will eventually stop occurring because it no longer serves any purpose for us.

Said another way, any behavior we engage in will become “extinct” (stop occurring) if it no longer has a function. Applying the principle of extinction to implement an extinction procedure means that you would deliberately stop allowing a behavior – a “target behavior” – to obtain the reinforcing outcome(s) that the behavior has always previously gotten. This procedure then makes the behavior ineffective and so it will occur less and less until it eventually stops altogether. You could describe it as a procedure where you would stop giving the behavior “what it wants” and what it has always gotten in the past.

Sounds like fun right? So once we start this process and Silas is going crazy because we will not repeat what he is wanting us to say, it is a battle to outlast him by either completely ignoring him or attempting to redirect his attention to something else. No matter what he is doing, what time it is, where we are, whatever, we cannot give in to him because then that will set the standard for him to get what he wants the next time. For example, if it takes him 10 minutes of constant badgering to get what he wants then next time he knows he will need to do what worked last time to get what he wants this time.

Holy guacamole I only thought I was losing my mind because of what we are currently doing. This is going to be a definitive marker of it being completely gone. This whole process is going to be difficult for sure but completely worth it not only for Silas, but for our sanity as well. When the time comes for us to start ‘extinction’ I will be as prepared as possible with my headphones and something to maintain my sanity.

217517_582432458456871_999882706_n

 

My Dilemma

I have been thinking a lot lately about the choice of whether or not to have another child. Over the past year I have really wanted to have another one but the timing just was not right. The other day it was brought up in conversation during dinner but quickly died there. Before, the choice was simple. Yes I wanted another child. Now it is not quite that easy.

Almost every day I see some article or video about how autism is likely to occur in future siblings. All of the sources report different statistics so this makes my struggle with the decision even harder. Some sources say that,

          “Autism is much more common in boys than girls; overall, the chance of having a boy on the autistic spectrum is about 1 in 50. This increases to one in five if the boy is born to a couple who already has an autistic child.”

 Not liking those odds. Then there is this one,

        “Autism (and its entire spectrum of disorders) is actually pretty common 1 in 166 people have it. If you have one child with autism, the risk for the next child is only 2-6%.”

 Well, that is a little better but as you can see my dilemma, those statistics are drastically different. While I understand not all sources are worth the same in the creditworthiness department, it is still difficult to take all of this information in. With this decision comes some very important considerations that affect not only me and daddy but also Silas and (if) potential child.

 

I just don’t know…

 

 If you feel like reading here are a few links. 

http://www.dailymail.co.uk/health/article-2619619/Autism-risk-ten-times-worse-child-disorder-reveals-study-two-million-children.html

 http://genetics.thetech.org/original_news/news49

 http://www.autismsupportnetwork.com/news/should-parents-autistic-child-have-second-child-39928333

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

 

Help, my mind is lost!

I have had a lot on my mind recently. After Silas’ checkup with his pediatrician her comments really stuck with me. She said that ABA therapy is great but we should get him back into speech and occupational therapy. We had to discontinue those services about 9 months ago when we started ABA due to it being nearly impossible for us to make a schedule that worked.

My mind has been returning to those comments quite often. I do so desperately want to get Silas back into those therapies because I know how much they can help him. Honestly, I just do not see being able to be away from work that much since I already leave two hours early every day so that we can make it home to do his ABA therapy.

I do have another option though. There is a school in our area that offers preschool services for children with developmental delays. They provide speech, occupational therapy, hearing, vision, and so much more. I went through the whole evaluation process with Silas and have a 17 page in-depth report. They already offered services to Silas. There is a problem with this too though. He would go to school from 9:00-12:00 or 1:00-4:00. The school district could provide busing for him but someone would have to be home when he left and returned, obviously. This comes with another problem. Daddy goes to college classes, I work 15 minutes away, and Silas goes to daycare 15 minutes away.

I got the bright idea, why don’t they just bus Silas from daycare! Nope, that’s out of the school district. There is another school in the district where he goes to daycare which provides the same services. Guess what…can’t go there because we don’t live in that school district. Can’t move into that district because the housing costs too much. We just can’t seem to win.

I would be willing to work nights and not sleep so that Silas could get the services he needs. Whatever sacrifices I had to make I would. All of this is stuff I think about all the damn time. Once this starts going across my mind I start thinking about how if we had close friends they could help. Then I remember that we do not have any close friends. Our life pretty much only revolves around Silas. Not that that is a bad thing, just kind of depressing.

Living in a spectrum world has many ups but it’s the downs that are hardest. It is so hard to talk to people who are not in our situation about our situation because it seems like whining. I do not want anyone to give me “I’m sorry” or “I wish I could help” because that is not what I’m looking for; which will be how it seems. Pity will not help us. So what would help us? No clue.

Image

 

Giving Medicine

Giving my child medicine almost seems impossible most of the time. Until recently, I have had a full on battle royal on my hands. Medication time was like Ronda Rousy vs. Georges St-Pierre. If there was a way to escape my attempts Silas could find it. It did not matter if I was holding him down, sitting on him, or anything else. You could bet that the majority of the medicine I was trying to give him was not going into his mouth. I did not even attempt at using a spoon or that nonsense cup that comes with most medicines. Nope, a syringe was the tactic suggested by his pediatrician the first time I mentioned giving him medicine was a problem.

This worked for a while but now that Silas is older, bigger, and much stronger I have now run into issues again. I am not a big woman. At 3 ½ Silas is already over half my size (thanks daddy!). My futile attempts at administering medicine have gone on to be unsuccessful.

To combat this, I started searching the Internet for other options. I have found the perfect one; mixing the medicine with a drink. This both covers the taste of the medicine and eliminates the syringe. Why the hell didn’t I think of that myself?? Now, medicine time is a breeze. There is always a drink that a medicine can be mixed with to cover the taste. If you have a child you are having trouble giving medicine to I suggest trying this. It has worked wonders for us!

 Image

Quit wiping your snot on me

Identifying when a child with autism is sick can sometimes prove to be difficult. Unless the child is verbal or knows how to communicate he or she does not feel well or what hurts many parents miss the clues. Silas does not communicate with me or Robert when he is not feeling well. The only time I am able to tell when he is like this is when I am actually able to see symptoms or he acts differently.

Some of the visible symptoms include:

  • obvious ones like vomiting and rashes
  • lethargy
  • lessened appetite
  • increased/decreased desire to cuddle
  • increased/decreased stemming behaviors such as flapping or spinning
  • changes in routine
  • aggression
  • much more

It takes time to be able to recognize these changes in your child and what they mean. Often these changes do not indicate sickness but rather stress or anxiety. It sometimes feels like a riddle. I find out all of the clues and then have to try to figure out what the correct answer is by guessing and trying different solutions.

My sweet man started to get what seemed like a cold last week. Snotty nose and dry cough were my indicators. I figured I would let his immune system do its job and waited to see if things changed. Within three days he was Amazon River style flowing snot everywhere, nasty wet coughs, waking up more during the middle of the night, laying around, and being a big whiny pain in the butt. I took him to the doctor and she told me he was right on the brink of having bronchitis. Medicine was prescribed and off we went to fill it at Walmart.

It was obvious Silas did not feel well but he insisted on letting every person in Walmart know that too. As we were standing in line at the pharmacy he decided to go berserk. Screaming, crying, and trying to rip off his shoes. I’m standing there baffled trying to figure out what in the world is going on. One minute he was fine then all of a sudden, boom! I started trying to diagnose exactly what his issue was before someone called child services on me.

I had just picked him up out of the shopping cart when the woman behind me in line decided to throw in her two cents on the situation. By this time I am already about to explode because I am annoyed and still in my ABUs so I am very hot. Plus, Silas is no feather. The woman says to my back, “As a member of the military you would think you would have more control over your kid and be respectful towards other’s wishes.”

If I had not had Silas in my arms and was not in uniform I am pretty certain I would have just turned around and punched this lady in the throat. But, my uniform dictates (since I respect it) that I maintain a proper military bearing at all times; and I am a mother so I am not going to make a scene in front of my child like my mind wanted me to. My initial thought process was (pardon my language), “Who the fuck does this bitch think she is? She has no idea what is going on in this situation right now. Respect other’s wishes? What wishes? Does she not realize everything I have given up for people like her?!”

Instead of saying the things that ran through my mind in the few seconds that passed or going ape shit on her in front of everyone, I chose to respond in the calmest manner I could. I politely turned around to her and said, “Unless you want me to be disrespectful I suggest you mind your own business.” She looked like she wanted to say something else but I think my death stare deterred her.

People think that others want and need their advice for everything and they must voice their opinions and disdain. Well, those words are wasted on me. If I wanted those things I would ask for them. Honestly, I could not give two shits what other people think about how I should raise my child. It is none of their business. By no means will my child starve or be abused; but he will try things (though he does not like new or different foods) and he will wait at least an hour before being supplemented and if he acts a fool he will be disciplined accordingly. He is learning to be polite and respectful and I expect him to be like that towards everyone. Just because someone did ‘this’ and ‘that’ which worked for their child does not mean it will work for mine. I have learned that things must be altered in a way that Silas can understand them.

Any who, now I am rambling and it is time for bed. To be continued…

Routines and Resistance to Change

Yesterday I got the bright idea to rearrange basically the whole house to rock Silas’ world, again. I do this every so often to remind him that things are not always under his control. Sometimes things will change or his routine will get out of whack and we must find ways to cope with those changes. The last few times I did this it took a while for him to adjust. We worked on ways for him to adjust and accept the changes for what they were, a temporary bump in the road.

Last night when I showed Silas his room we just paused in the doorway taking it all in. It was as if I could almost see the wheels turning in his mind. I explained to him that it was time for a change and he would adjust to it in no time. We spent time going through the changes and learning where things were now located. The one major thing that he had an issue with is that I took his changing table down. I explained that he is too big for me to put him up on it and he needs to learn how to use the potty. He just smiled at me, like yeah right! Other than that he didn’t mind the change at all. Wow!

Some of you may be wondering why I am making a big deal about this…if you have a child with ASD or know someone that is then take a moment to read this. It is very informative and I wish I would have known this a long time ago. 

 

Many people with an ASD have a strong preference for routines and sameness. Routines often serve an important function – they introduce order, structure and predictability and help to manage anxiety. Because of this, it can be very distressing if a person’s routine is disrupted.

Sometimes minor changes such as moving between two activities can be distressing; for others big events like holidays, birthdays or Christmas, which create change and upheaval, can cause anxiety. Unexpected changes are often most difficult to deal with. 

Some people with an ASD have daily timetables so that they know what is going to happen, when. However, the need for routine and sameness can extend beyond this. You might see:

  • changes to the physical environment (such as the layout of furniture in a room), or the presence of new people or absence of familiar ones, being difficult to manage
  • rigid preferences about things like food (only eating food of a certain colour), clothing (only wearing clothes made from specific fabrics), or everyday objects (only using particular types of soap or brands of toilet paper)
  • a need for routine around daily activities such as meals or bedtime. Routines can become almost ritualistic in nature, having to be followed precisely with attention paid to the tiniest details
  • verbal rituals, with a person repeatedly asking the same questions and needing a specific answer
  • compulsive behaviour, for example a person might be constantly washing their hands or checking locks. This does not necessarily mean they have obsessive compulsive disorder (OCD) but if you are concerned about this, speak to your GP in the first instance. 

People’s dependence on routines can increase during times of change, stress or illness and may even become more dominant or elaborate at these times (Attwood, 1998). Dependence on routines may increase or re-emerge during adolescence.

Routines can have a profound effect on the lives of people with an ASD, their family and carers, but it is possible to make a person less reliant on them.

 

THAT is why I do things to rock the ritualistic world that Silas lives in. He is set in his routines. We go the same way to and from daycare; he won’t eat new foods; we have a set routine for eating, bathing, and bedtime; he repeats things a thousand times until it is answered or repeated just the way he wants; and so much more. I do NOT want to live in this world with him for forever and I do NOT want him to be stuck in needing this world. Granted he is still very young but if I am able to break these habits now then that is much better for all of us. We all have our routines which can be healthy, but not if we need those routines.

Image

 

Shopping for Toys

Silas was leading Robert and I around Toys R’ Us. This is the first time that he has walked in a store with lots of people. He was just roaming around going up and down aisles. Even when people were around he didn’t yell at them or even really notice they were there. Super proud of our baby!!