Autism: C'hele's Story

December 20, 2007

Blind Poetry

Filed under: Poetry — C'hele @ 09:33

Love caresses me

Like a soft sea breeze

At dusk.

———————————————————————————————–

Love cannot exist by itself-

Its best friend always manifests itself

Like the sunrise meeting the dark sky.

———————————————————————————————–

Once, I begged love to reveal herself to me.

After opening what I thought was many “right doors“,

I suddenly stumbled across her.

In my shock, I angrily asked her:

“Why did it take so long for you to answer?”

She replied:

“Would you have recognized me at the beginning?…”

“My essence has no meaning without being accompanied by heartache.”

————————————————————————————————–

The tallest cedar,

With its top gently swaying

To and fro high in the firmament,

Strives to continually grow upwards.

It’s goal?

To experience pure bliss

With a love

More powerful

Than life itself.

If only we too,

Would strive towards

That kind of growth.

December 8, 2007

An Ode To Love ~

Filed under: Poetry — C'hele @ 10:17

Why is it that my flesh has never known yours

Yet my body responds to the thought of you

In a fashion that only pure bliss knows?

How is it that we understand each other so well

And yet we have never fought?

How is it that we are able to share a thought

Across thousands of miles?

And yet we intuitively know and pick up the line?

From one soul to another,

Our spirits understands

And yet doesn‘t –

Will the yearning in my heart ever stop?

It cant.

For as long as our essences survive and exist,

We will always discover a way to find each other

But be forbidden to touch

True love can only mirror true love

And yet here we are, separated by destiny

How I yearn to know what your touch is like!

How I yearn to know what it is like to feel cocooned

Within the warmth of your embrace

To feel and taste your nectar upon my lips-

The way I see it,

This is the purest way-

To understand what it is to experience

Pure love in collision.

I internally die

A thousand mini deaths

With the mere thought.

I love you,

More than the meaning of existence itself.

 

December 3, 2007

The 40 Developmental Assets

Filed under: Uncategorized — C'hele @ 21:31

I forgot to add the website should anyone wish to learn more about “The 40 Developmental Assets.” Check out thier website at: http://www.search-institute.org/

Autism: Creating Connections

Filed under: Aspberger Syndrome, Autism, Special Needs — C'hele @ 21:12

Last Friday I attended a full-day workshop on “Creating Connections With Students To Build Resiliency Using The 40 Developmental Assets.” It was an interesting workshop, one intended to instruct teachers how make connections with their adolescent students between the ages of 12-18. It wasn’t a workshop that addressed any specific special needs issues, but it was just as informative and I found that some of it could be adapted towards some of our kids. The workshop covered topics such as: The Levels Of Social Responsibility, The 40 Developmental Assets (broken down into two categories: Internal and External Assets), A Checklist for kids on “How Many Assets Do I Have?, and the Roles of Teachers as supporters for their students. It was all very common-sense information broken down to help teachers identify and how to build upon the relationships with students that end up falling through the cracks within the school system.

One part of the workshop that I found interesting was the concept of “The Power of Five.” The speaker made mention that “change in a students perception (towards success in school and later in life) occurs only when there is change in what they experience.” And, the only way to successfully do this, is to have in place for each child, five people in their lives that act as mentors or anchors. Some of these people could be family members, teachers, a neighbour, a coach, a religious or spiritual figure and so on. However, it was interesting how the speaker made it quite clear that in order for each child to be successful that there “had to be” five positive mentors- especially for high risk children who have a smaller number of assets and fewer supports in their lives.

I thought to myself, this could work with higher functioning autistic kids or Aspergers kids too. Then I thought of my daughter. This thought led me to another thought of how my daughter does not go out in the community with a life-skill worker due to her separation anxiety issues with me. I’ve decided that I must look into this further. How can I apply the “Power of Five” into my daughters life meaningfully and not just hire any Joe-Blow to work with her?

My daughter adores my father and hangs onto every word he says. He can get her to do almost anything and all he has to do is ask. Hmnn. Definitely Mentor #1.

Mentor #2: My mother is the second-runner up from my father.

Mentor #3: Believe it or not, I fit in somewhere between 2nd and 3rd. (My daughter says I’m first, but when I observe my daughter and father interact, I don’t know if I believe her!).

Mentor #4: 0

Mentor #5: 0

Hmmm. I need two more. Thinking about it further, Michaela has for five years, been taken formal Equestrian riding lessons with a stable well known for also providing Therapeutic Riding Lessons for special needs kids. Due to Michaela’s natural passion and talent with horses, she does not take therapeutic riding lessons but regular formal lessons. Her trainer has known her for a very long time and upon my asking Michaela if she considers her trainer to be a mentor or someone she can speak to comfortably with, Michaela immediately replied “no.”

I learned this weekend that her trainer has a tendency to snap at her especially when Michaela asks for help and has to interrupt her whilst in another lesson. For someone who is a professional trainer and has been specifically trained to work with special needs kids, this is surprising. She of all people should know, that when special needs kids are hanging around in the stables that this is bound to happen. Upon finding this out, this really disappointed me. Michaela’s father now escorts Michaela to and from her riding lessons and has done so for about three years and he hasn’t spoken to me about this.

I was also reminded by Michaela that she has yet to make any friendships with any of the other riders in her group. For years, Michaela has been attending their annual Christmas parties, fund raisers and auctions. And still, she has made no close friendships there. After speaking with Michaela about this, she amazed me and appears to have a good handle on things. “Mom, I care more about being with the horses than to bother about being with those snobs,” was her reply. I was happy with how she is handling things but saddened that she has not developed a closer relationship with her trainer. No inclusion as a possible mentor #4 unfortunately.

So, this weekend, I have been reminded of the importance of having people outside of our family included in Michaela’s life. This is, I was reminded, is another important step towards building independence for Michaela‘s future. She may have separation anxiety issues regarding me however, I need to work around it and bite the bullet and stop being somewhat over-protective. My parents are not going to be around forever so building a new web of connections for my daughter is the next goal that I need to address soon.

Autism: A Mixed Bag Of Labels And The Challenges Of Working With A Child Who Has Autism and Oppositional Defiance Disorder

Filed under: Aspberger Syndrome, Autism, Special Needs — C'hele @ 00:30

Many autistic children unfortunately do not come into this world with a singular label of autism. Parents and teachers are faced with an incredible challenge when it comes to observing and appropriately dealing with difficult behaviour. If a child is diagnosed with a high functioning autism or Aspergers Syndrome, it becomes even harder to deal with due to the fact that these kids “look” normal or typical. It is common for people to often accidentally overlook the autistic and or other (different) diagnosed characteristics and immediately think that the child is being “spoilt, defiant, difficult or weird.”

As a parent, I have often caught myself misinterpreting negative behaviour. Whatever the case, whether you have been doing this for some time before your child was diagnosed or, you are currently aware of your child’s disability and still catch yourself falling into this trap, don’t beat yourself up over it. Its never too late to change your approach and retrain your thinking. Parents have the incredible challenge and stresses of having to balance and or juggle, the similar yet different characteristics of autism and the additional labels that often accompany this neurological disorder.

To my readers who may not understand how the accompanying labels work, I will include a few examples using my daughter as the first example:

1. My daughter‘s formal diagnose(s): Aspergers Syndrome + ADHD + Mixed Receptive/Expressive Language Disorder + Additional Developmental Delay + Anxiety Disorder.

*Other autistic individuals may have labels that might look like this (and I have personally worked with such people):

2. Moderate (Kanner’s) Autism + Down Syndrome + ODD (Oppositional Defiance Disorder) + ADHD.

3. High functioning autism + Tourettes Syndrome + ADHD + OCD (Obsessive Compulsive Disorder).

4. Low functioning autism + Tourette’s Syndrome + Impaired Language or Language Delay + OCD.

5. High functioning autism or Asperger’s Syndrome + ODD + ADHD + Developmental Delay.

Now, add the child’s personality to this mix! Can you see the challenges a parent or teacher faces when having to split apart all of these combined things to get to the heart of negative behaviour? Its extremely difficult.

These are just a few examples. Many individuals with autism could have quite an interesting mix of different disorders that tag along with their autism. For each child, it is as unique as each individual has their own unique personality.

I am going to do a bit of review here before I go onto the subject I really wanted to tackle today:

So how as a parent do you possibly handle all of these challenges without going insane? I hate to be blunt here, but first realize that stress is now a part of your daily life. But you can help ease it substantially. Depending on the level of autism and their other accompanying labels, many of these kids can become quick learners! Secondly, do not deny your child’s disability or challenges. You do your child no favours doing this and “forcing” them to be “normal.” Today, my child confuses people because she “appears” normal or typical. When people discover the nature of her challenges, they are shocked. She wouldn’t of turned out this way if it wasn’t for me jumping in on early intervention programs to assist her. If your child is diagnosed later in life, depending on the child’s personality and predetermined habits or rituals, it may take longer to retrain their thinking or routines. I have personally witnessed some autistic kids receive help for the first time in their mid-teens. Though they progressed slowly, they did fairly well. Some habits/routines/rituals however, were unable to be redirected to more appropriate behaviours or activities. The earlier you get help for your child, the better.

“And,” routine, routine, routine. I cannot stress enough how much routine, consistency, and predictability reduce most behaviours in these children (in my opinion).

In Canada we are fortunate that many of our children upon receiving a professional diagnoses of autism, can receive funding to provide the essential services to our children. For my American bretheren, I am unsure if all the states or just some of them support autistic children in this manner. For those who are unable to afford such services, refer back to my blog entry from July 16, 2007 (sorry, I haven’t had the time to learn how to link appropriately yet). There will be some wonderful resource materials that you can utilize. However, there will be some things that you will not be able to do (we can only do so much as parents) that a professional can do, such as counselling.

But If you have a close friend or family member that you respect and your child trusts- a person who has common sense and is good at giving guidance, ask them if they can speak to your child to assist them in learning a new appropriate social skill, advice, or teach them a new strategy that your child is unwilling to accept from you.

However, if you can learn how to utilize other strategies such as using language appropriately, this is half the battle. If you have no way to gain access to a Boardmaker program to print out visual symbols and or to make visual schedules, draw some. Seriously. A stickman representing your child or your child in certain situations, will make more sense to them than your words if it means to decrease or avoid any elevated anxiety! Cant afford books? Visit a library and ask them to bring certain books in for you (I have done this).

There are options out there for those who are financially strapped. It may take a little bit more work, but it will help ease the anxieties and negative behaviours in your child’s life by making their life more predictable (autistic kids function better when they know what’s happening next or if they require more detail, what’s happening in the whole day). Your life will be a little bit more saner too of course.

Getting back to the beginning of this post, know the characteristics of each label your child may have. Measure their behaviour: watch out for antecedents (what happened or set the child off before negative behaviour occurred), the type of behaviour that manifested, and what the natural consequence was. If you have the time, carry around a journal and document these targeted behaviours. This information (or knowledge) is power: know your child’s triggers. This will in turn, help to avoid the major melt-downs or as some people may call them, tantrums. I don’t like to use the word tantrum, as to me, it defines negative behaviours in typical children. To me, children with cognitive/neurological challenges have melt-downs that are entirely different from tantrums as they are based on sensory issues, sudden changes, new transitions or other. For most autistic individuals, it is the manifestation of a neurological overload.

What I really wanted to address in this post is the challenge of working with a child or student with high functioning autism, ADHD and a severe case of Non-compliance or Oppositional Defiance Disorder. These kids, in my opinion are the most challenging kids to work with. They will literally send you over the edge. These kids are often medicated, they always try to work on their own agenda’s. They are very low academically, have a low-self esteem and thus show little motivation to learn or try new things for fear of looking “dumb.” Many will holler and or complain most of the time that their parents and or teachers, do not listen to them (its their way, or the highway in their minds). Autistic kids in general have the tendency to become very ego-centric. Mix this with a strong will, ODD or a Non-Compliance disorder, and you now may have a walking time-bomb on your hands.

Here are some strategies that I have found that helps promote a smooth working relationship between parent or teacher, and a child or student with autism, ADHD and ODD:

Know the child’s triggers that will cause negative behaviours.

Attempt to redirect before triggers occur or anger escalates.

Provide a visual or written schedule to make the day predictable for the child.

Understand the effects of the medication the child may be taking.

Use positive language (avoid saying “no, don’t, you can’t, etc). Instead use: “first this, then that, as soon as you do this, we can do that” and so on.

Ask open ended questions when addressing negative behaviour. For example, instead of saying “Why did you punch the locker?” say something more positive such as: “What did you think made you so angry that you had to punch the locker?”

Schedule in regular breaks during stressful or a non-preferred activities.

Determine with your child/student where he/she can go if they need to calm down or require respite time. This will help to avoid negative outbursts and it also gives them a sense of control to self-correct.

Create contracts or goals with your child/student on how to improve/resolve certain negative behaviours. Redirect them back to their contract or goal(s) when they repeat that targeted, negative behaviour.

Respect their space: Allow certain proximity between you and your child/student. Do not touch them if their behaviour/anger is escalating: often this will cause them to melt right down and be prepared that this anger could be unleashed upon you physically.

Praise them and help build their self esteem. At first, if you are unable to praise them for positive behaviour, praise them on one of their strengths and be descriptive. Don’t BS them- they’ll know it in a second. Be sincere but don’t embarrass them! At the end of the day, even if the day totally sucked and it was unsuccessful, I always send the student home with a verbal comment reflecting at least one positive comment about his or her’s day. If I am able, I will always leave one positive comment in their communication book for their guardian or parent to read. I will often read this entry out-loud to my student before they he or she leaves the school.

Use positive reinforcement- avoid punishment. Help the child to become successful by earning a preferred activity or something that they love at the end of the school day (or at home, before they go to bed).

Be calm. Avoid power struggles and avoid being sucked in a verbal fight. This is the hardest of all things to do. They will work hard to know all your trigger points just as you try to understand theirs. What I found helpful when a students anger is escalating, is I like to speak to them in a really quiet, soft, voice. They will focus harder on what you are saying and often this alone will calm them down.

Take a CPI course (Crisis, Prevention, Intervention Course). It will help you to understand the various escalation levels in angry or physically violent children and how to deal with the child humanely.

Actively listen to your child/student! Reflect back what your child or student is saying. Often with ODD children many people will attempt to extinguish behaviour by ignoring them. Many ODD children become extremely angry if they feel they are not being heard. I.e.: Student: “I told you, I’m not doing math.” Parent/Teacher: “I understand that you do not wish to do your math right now. I’m sure its really frustrating for you sometimes. But Mr.(?) put the assignment up on the board for “everybody” in the class to do. If you have any problems with your math you are welcome to ask for help at any time. As soon as you complete your math, we can do (?).”

Pair your child/student up with a buddy. They most often learn faster what is socially acceptable and or learn about the project/subject better without negative behaviour when a peer is role modelling.

Watch your body language: when a student is agitated or their anger is escalating, use non-threatening body language. For children smaller than yourself, talk to them by bending down or sitting at their eye-level.

Acknowledge your child’s/student’s feelings with comments such as: “Wow, you look really upset or, I can see that you are becoming frustrated, how can I help you? Or, Geeze if that happened to me, I would be upset too….”

Respect their dignity. If your child/student is a teenager and requires visual schedules or sensory items that calm them down for example, make sure they have access to them discreetly without it being obvious to others. Try to match, adapt or modify work or activities that are age-appropriate.

Work with their talents and strengths. This will most often become the only avenue towards their success in life.

**Remember: Our goals as parents and educators are to foster independence in our special needs kids.

On a parting thought, I wish to tell you: parent to parent, to be prepared to make many, many mistakes. Allow yourself to be human once in a while even if it means balling your head off to release frustration, anger and or despair. I like to look in the eyes of my child or student and often I reflect: perhaps they have been sent to me to teach me something about myself I never even knew was there, possible or, to teach me something I never knew I was capable of.

For many parents, the challenges of their special needs kids are too overwhelming and too great and many have been forced to consider foster care or place them into care homes. Personally, I think this is o.k. Every parent of a special needs child has an unique situation. Sometimes parents are forced to foster their children into care for the health and well-being of the child and or family (medical needs, violent behaviour are a few examples). But, just because this happens it doesn’t mean that families cannot still be pro-active and advocate for the needs and well being of their child.

One parent and a friend of mine with a child who has low-functioning autism (with of course, other additional labels) immediately comes into my mind. The decision to have their child move into a care home and be schooled in a specialized autism centre over a regular school/resource room, was the best decision for the child and for the family. Their autistic child has blossomed and the family now functions as a normal family does. In fact, they found that they are more successful with their child when they advocate for him whilst he lives outside the family home. Strange, but its true.

Nurture and honour this child for the unique and talented individual that he or she is. I hope this information helps (even if its only just some of you), in your quest to make your child or student a more productive, social, and hopefully more successful human being. Assist and encourage them how to appreciate and love life because when they become adults they will have a hard time to find valid reasons to want to.

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