Autism: C'hele's Story

November 16, 2008

Asperger’s Syndrome, My Daughter and High School

Filed under: Aspberger Syndrome, Autism, Special Needs — C'hele @ 12:22

If there is one thing I am deeply grateful for this school year, it is that Michaela absolutely adores going to high school. When I ask her to tell me one thing she loves most about high school, her answer is instantaneous: “I love my new independence.” And I in turn, immediately think- Whoah. This is both awesome to hear and yet, very scary. She now wants to do too much, too soon. One thing about her being an Aspie individual, is that she has a very innate, strong sense of self. She knows exactly who she is and what she wants in life. It doesn’t help that it is typical of these individuals to think like an adult and feel like they are one. Being an only child I’m sure, doesn’t help matters either. There is now a lot of conflict when placing limits. It’s a shock I’m sure, leaving the rigid, routine schedules of primary school and to be thrust into the busy high school environment and into new levels of independence.

Despite that she adores high school, she has become incredibly frustrated to the point that her anger and frustrations have manifested into regular, routine anxiety attacks. Again, this is typical for those who have autism and Asperger’s syndrome. Those who have educated themselves regarding the world of “autistics” (Dr. Temple Grandin’s term) know most of this. Recently, I have been mentally greedy if I can term it that way, reading anything I can get my hands on regarding this unique form of autism. Asperger’s syndrome is not only unique, but its quite complex.

If you know someone, or have someone in your family with the label of Asperger’s and have not read Dr. Tony Attwoods book, “The Complete Guide to Asperger’s Syndrome,” I encourage you strongly to find the book and read it. I have re-read this book recently and I have to admit that it has become the main vein of support between my daughter and I. The once beautiful hardcover book that I have in my possession, is now scarred up with long, penned, underscores!

Right now, I am re-reading Dr. Temple Grandin’s book, “Thinking in Pictures.” The woman is also one of my gurus who provides a wealth of intimate knowledge of what it means to be an “autistic.” Boy. Did she help me out yesterday regarding Michaela’s recent and severe anxiety attacks. But I’ll talk about that in a bit. I have had to re-read these books before I continue on to other books as there is just so much information to absorb. As my daughter grows within her world, so I have been. I encourage those who have already read or will read, these books to keep referring to them often. You will find as I have, that these particular books will continue to reveal pertinent information as both you progress through your journeys.

I have mentioned it here on previous blog enteries, how Michaela has increasingly become more aware of her challenges and how different she is from the outside world. This awareness has now taken on a higher level. Michaela is currently enrolled into a program called, “School Quest.” All of her work is completely modified as she has never been in a regular or in an adapted program. This School Quest program, teaches and supports independence and later promotes work experience. In high school, she has four blocks of courses: two are in her resource room and two are elective courses. In her resource room, she joins other children with the same neurological challenges. Male students with Asperger’s figure more predominant in this class (no surprise).

My daughter has observed that even though many of these males students share the same disorder as herself, she watches them complete their work without any adaptations or modifications. “But” due sensory/social/communication impairments, they return to the resource room for assistance. One of the things that have increased, is Caela’s main insecurities about being unable to spell, write, do cursive handwriting or type on the computer. She finds it hard to understand that, if her Aspie friends can do these things, “why” cant she?

Reading Temple Grandin’s book, “Thinking In Pictures,” has caused me to reflect and compare. Here is a woman with “Kanners autism and later Asperger’s Syndrome” who has risen to such great heights despite the incredibly difficult obstacles. She was fortunate to have some amazing, strong and intelligent women in her family to nurture and support her. Looking at her now? Temple has a degree in psychology, a Ph.D in animal science, and has designed one-third of all the livestock handling facilities in the US. She travels all over the world, lectures, and has written many books regarding autism and how to understand animals. Then I think of Bill Gates and Einstein and what they accomplished. Then I think of the students I support at school. Most are also Aspie individuals who possess many wonderful talents and who have potential for great success later in their lives (despite the overwhelming social, sensory and communication challenges that they face daily).

And then I myself as a mother, become angry and resentful. I feel like my daughter has been ripped off.

Dr. Temple Grandin has made the comment in her book, Thinking In Pictures:

“There is great concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out

.”Temple goes on to say:

“A little bit of autism genetics may provide an advantage though too much creates a low-functioning, nonverbal individual. The development of genetic tests for autism will be extremely controversial.”

I read the above and my heart sinks. I think of Michaela. She too, has been diagnosed as an Asperger’s individual but has another label that robs her from her gift or gifts of being a true Aspie. This overlying label of her having “other developmental disabilities” puts her in a different category. But having other overlapping labels is not uncommon with autistic individuals. An example that Dr. Attwood provided, is a person with autism could also have; ADHD, Tourette’s disorder, and OCD (obsessive compulsive disorder). Dr. Attwood refers them as “clusters (of labels).” Regarding this, he recommends that the child or adult would need treatment for all four disorders in order to fully help the individual.

Dr. Attwood has made mention in his book: “The Complete Guide To Asperger’s Syndrome that:

“The simplest way to understand Asperger’s syndrome is to think of it as describing someone who perceives and thinks about the world differently to other people.” Some of the children he observed “had specific talents that could lead to successful employment and some could develop life-long relationships.”In my opinion, if your child is an Aspie individual, follow Dr. Attwood’s advice. Its common sense. Have all of your child’s disorders treated individually. Celebrate the uniqueness that makes your little Tommy, “Tommy or Mary, Mary.” Mould your child into something great and wonderful and unique. Don’t attempt to change him or her into someone they weren’t meant to be. No one could ever change my mind in thinking that these unique souls intentionally chose to come back down here on this plane to become Asperger individuals. I believe that they have come here to teach us so many things and to bless the world with their uniqueness. Their potential gifts to the world ultimately and heavily rely upon us: the parents. Most parents of Aspie or autistic individuals unfortunately do not recognize the trust (and later the blessings) that the Universe has bestowed to us due to all the stresses that we face.

Your child could possibly become another genius that could change the world in some way. How can you, the parent- coax and nurture this gift out of him or her? The Universe does “not” dole out what it thinks that you cannot handle. What hidden gifts does the Universe know that you possess that you have yet to discover as a parent so you assist your Asperger’s child? Alchemy is about the power to transform. So. Transform the lead (the curse of autism) into gold.

What in the world has brought me to think of all this you wonder? Two things.

One: Because I see. I see everyday here at home and years at work the distinctiveness that is called the autistic mind. These individuals are both neat and quirky. They are the most incredibly honest, smart, sincere, studious, and loving people I know. One of the IEP goals for one of the students I work with now, is to learn about appropriate and inappropriate touching (he wants to hug and squeeze everyone he sees). One day as we walked down the school hallway on our way to his History class, my student suddenly whipped his arm out to grab me for a side-hug. Upon telling him that it was more appropriate to ask me first if I want a hug , I quickly wiggled out of his grasp. He looked me right in the eye and stammered: “I know C‘hele- but, but….I just wanted to tell you that I had a really good day today and that I love you!” Moments like these make me want to completely melt.

Two: I observe and consider my own Aspie daughter. She has the many typical, overlapping disorders. One in particular, is a not so common disorder of anoxia (lack of oxygen) that occurred during birth. This, cannot be fixed with any known treatment or medications. Its permanent and it over-rides all of her other disorders outside of her main Asperger’s diagnoses. Even though my child has many talents (and they’re not academic), I am not sure at this point if I can channel her talents or strength into any significant career. What, I question, will become of her later in life?

I am realistic to accept that she will struggle with these life-long challenges. But to have a neurological (autistic) disability along with additional, minor brain damage? My work is more than cut out for me (and for Michaela). So my message to the readers who can relate is: be grateful if your child has Aspergers with other overlying challenges that can at least be treated. Yes, the work is hard and the road is long, but in my eyes it would be well-worth all the suffering if your child is at least able to earn a degree and a worthwhile career. Dr. Temple Grandin is very open and honest about her therapy and medications and how she has a better quality of life because of them. But I have to admit- your child will most likely have a better chance for success than my daughter will. The optimistic side of me still wants to defy the obvious that has been diagnosed down on paper and I hope that one day, she will at least evolve enough so that she will be able to live independently.

So. That means that Michaela will never become a brain surgeon, a lawyer, a Bill Gates, an Einstein, a brilliant scientist, inventor or actor. When I first discovered many years ago when Michaela was young, how many Asperger individuals “can” succeed to these highly successful levels, I was elated with hope. I have to be honest and say that realistically, I really didn’t expect Michaela to be any of these. But any hope I might of had of her going to university and having a career, was diminished a long time ago. Unfortunately, Michaela was not meant to follow this kind of path.

Right now, all I can hope for is that Michaela will be able to hold down a decent job, remember to pay her bills, know how to save money and how to live alone and be safe and not let others take advantage of her. Basic life-skills and organization skills is the necessity here.

Getting back to Michaela’s anxiety attacks.

This past week, Michaela has been experiencing quite severe chest pains. Having a very emotional nature (I admit, its inherited from mother), she has been having difficulties pin-pointing to any potential causes. After having discussed the situation, we calmly changed the subject. Michaela had been working on some homework that is due after the weekend. When I went over to look at what she was doing, she freaked. She was completing a hand printed final copy of an essay. When I looked over at her rough copy and looked at the final copy, I couldn’t tell the difference between the two. Both copies were an absolute mess. I guess I stood there for too long, silently looking back and forth between the two papers attempting to figure this out. Michaela then freaked with embarrassment. In the midst of her melt-down, she explained how agonizing it is for her to print, write or spell. With tears rolling down her face, she related how she has been watching both the kids in her resource room and in her elective courses. She was frustrated, angry and embarrassed that the other autistic kids were able to accomplish these tasks but she could not.

“Why mom? Why cant I do these things? I try so hard to practise so I can keep up with the others. Why does my brain do this to me? I am stupid and I’m depressed. Even the other autistic kids are smarter than me!”

My heart was breaking. I told her about Temple Grandin and the challenges that she faced when she was young and the challenges she still faces now. I was pleased that she was willing to listen.

I told her:

“You are unique, you see things differently than other people. But not everyone sees the world the same. Your brain works perfectly fine, it just operates differently than other people‘s. There are some things that you can do that others cannot and likewise; other people will be able to do things that you cannot. There is no such thing as “the perfect person.“ The most important thing to remember is, don’t be ashamed to ask for help. Tell people that you do not understand. It is better to tell others this and not be ashamed, than not telling others that you really do need help or you don’t understand only to walk away resentful of others and of life. Those feelings of anger will only end up harming you in the end. Be proud of who you are- you have so much to share with others. Later in life, some people might be jealous of you, refuse to let them discourage you or tell you what to do. Seek someone you trust, talk to them and get their advice if you need to.”

We talked more about this of course, but this was pretty much the jest of the conversation. I thought hard for a long time. What could I do or what could be done to help my daughter to cope with her academic challenges? Some ideas came to me. Then I considered her panic attacks- what else could I do outside of giving her medication or a herbal remedy to help calm her nervous system? And then a light bulb went off in my head. I remembered reading something in Temple Grandins book, “Thinking In Pictures.” Temple discussed the challenges of coping with her own fear-based, severe panic attacks and the need for deep pressure. She found that if she experienced deep pressure at the sides of her body, head, and neck during a panic attack, they would go away leaving her calm and serene. I wanted to try this and see if deep pressure would help Michaela. The opportunity arose when yesterday afternoon, Michaela was again experiencing pain in the centre of her chest. I asked her permission to try something that I read in Temple Grandin’s book and she was o.k. with it. I went and stood behind her, wrapped my arms around her upper torso and squeezed hard- but not hard enough to hurt her. I asked her if that made her feel any better. Immediately she responded “Yes! Do it again!!” After about ten minutes, her chest pains started to slowly subside.

Wow, I thought. I cant believe it worked. I was immediately grateful for Temple Grandin for divulging this experience of hers. Temple went on to develop “a squeeze machine” and she uses it when she is in sensory over-load. I told Michaela this and it helped her to understand that she is indeed “not alone.”

I thought it was important in Michaela’s primary years to be exposed more to her typical peers instead of being holed up in a resource room. And I was right. Now, I find that the reverse is needed: Michaela needs to be exposed to other teenagers like herself so she can understand that she is not the only one experiencing these frustrations and anxieties. I will be searching for group therapy in a natural setting that specializes with these issues for Michaela soon.

And thus, the saga continues.

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13 Comments »

  1. The world is such a big place yet our lives are so intertwined!

    I don’t know if I had told you before that I have a daughter and a son that are a month apart in age. My son was always talented/gifted and hardly ever had to make an effort in school. My daughter was diagnosed with an information processing disorder which made reading almost torture for her. There were two frustrations with my daughter. A system that wanted to just make her normal and take her off her IEP and not understanding how her brain worked to be able to help her. She never sees a page as individual characters laid out in order on a page. She sees an overwhelming cluster of swirling characters. She ended up with a full scholarship due to her “unique” learning style. Money that often is not used since kids like these often opt to never have to go to school again.

    I am going to a lecture tonight on neuroplasticity. Research in this area indicates that autistic children, by the effects of both genetics and the environment, are over stimulated by taking in information. This occurs at a molecular level by an apparent inability to control the the production of nerve growth factors called Brain Derived Neurotrophic Factors. Their disability is really and over ability. They are creating too many neural connections as opposed to Alzheimer patients not producing enough BDNF to support long existing neural connections. The cool thing about the “new” science of neuroplasticity is that it believes the brain can recover from most anything. There is even an example of recovery in a normal adult suffering from a severe anoxic event. Neuroplasticity explains the Gates, Einstien, Grandin (who is a key player in my work field) phenomena in that somehow they rewired their own brains to deal with the way the perceive the external word. This made their “gift” an ability to see connections the “normal” mind could not see.

    I am not reading this stuff from some grand scheme to save the world. It is work related in order to understand how neurological development can be used to build better working dogs. I know how to breed good dogs and I know what good dogs look like as adults. It’s all the stuff that happens in between that I thirst to know more about. If there are ways to select or control for BDNF or Dopamine function genetically or ways to control these event via the environment it will make my job easier.

    I don’t know if any of this will be useful to you, but as much as you study on these things I thought I would throw it out there.

    Comment by loveslostsoul — November 16, 2008 @ 18:25

  2. Hi Platy- Yes I have read that words and reading can overstimulate some autistic children and especially Dyslexic children. I have a huge interest in how the human brain works and I intend to make it my next subject of reading. However, I have to find a proper bookstore that carries books such as these. I would be interested to learn how the workshop went. Thank you for your comment 🙂

    Comment by C'hele — November 16, 2008 @ 20:31

  3. I read all of this with great interest, and continue to be deeply moved at your and Caela’s continuing courage and openness in the face of great challenges. Your support is beautiful to witness.

    I was wondering, toward the end of this piece, whether Caela might benefit from using voice recognition software on a computer to write essays, etc. rather than having to force her always-interesting and often very profound ideas through the less capable part of her brain — the part that translates her thoughts into writing. That might be a completely inappropriate idea, but it was just something that popped into my head while I was thinking about her, and about how frustrating it is to have something clearly in your mind and not be able to get it out on paper.

    Comment by davidrochester — November 16, 2008 @ 23:46

  4. David! I swear you had a psychic moment- because I thought of that too. I used to use similar programs with quadriplegic children and they are fantastic. Unfortunately, they are SO expensive. I would have to get approval from a psychologist in order to purchase one through Michaela’s autism funding. That will be hard since I fired her last therapist as she was totally useless. Its hard to find a psychologist who specializes in autism and when you do find someone they know you have autism funding and charge you up the wazoo thus taking most of your funding. Its sick. David again your right: you have no idea how hard it is for an individual with a neurological disability or challenge who knows what they want to say and cant write it down. Worse- they become so frustrated that then the brain shuts down and they verbalize it either. Michaela experiences this too. Sometimes it takes up to a week for her to calm down encough so I can find out what has been bothering her! Thank you so much for your input and support 🙂

    Comment by C'hele — November 17, 2008 @ 02:27

  5. Lets try this again (this is what you get when you rush!): “the brain shuts down and they cant verbalize it either.”

    Comment by C'hele — November 17, 2008 @ 02:28

  6. Hello,
    Thank you for such a thoughtful post, I don’t think my comments can do it justice except to say that if more parents read about your experience, they would be enlightened and see that people are people and we need them all.

    Just a quick note about your daughter’s anxiety– could be panic attacks. You may want to look at my book: Freeing Your Child from Anxiety, http://www.freeingyourchild.com, for strategies to help her work through the panics. More info also available at http://www.worrywisekids.org.
    All best to you,
    Tamar Chansky

    Comment by tamarchansky — November 17, 2008 @ 05:50

  7. Ms. Chansky: Thank you for taking the time to comment on my blog- I warmly welcome your suggestion to refer to your book. Yes. My daughter has very high anxiety and suffers from panic attacks. I will be visiting Chapters later in the week and will seek and peruse through your book.

    All the very best to you too.

    Comment by C'hele — November 17, 2008 @ 08:01

  8. C’hele — Just because I’m curious … what’s the cost for voice recognition software?

    Comment by davidrochester — November 17, 2008 @ 08:07

  9. I feel so dumb. After your first comment I was thinking to myself “geeze, I know of a program that is funded by the BC Ministry that offers assistive technology.“ And now I remember. God. I never gave it a second thought because most of the kids I worked with in the past who received assistive technology and benefited most from it, were in a wheelchair disabled with disorders such as CP, MD or other. They would use head and toggle switches that would activate many of these programs. And then I remembered a non-verbal autistic child that I briefly worked with. The same assistive technology program provided an augmented communication system called a Mini-Mo. This device, is something they carry around with them. It is pre-programmed with words and sentences so these individual can speak back to you.

    This program sells, rents, and lend their technologies. The problem is, is that if I want to borrow one of their devices, I would have to go on a waiting list. I would have to hire a speech and language pathologist and get a referral (I had forgotten that I need to refer to a SLP first and then a psychologist if I had to). Today, I emailed Michaela’s teacher. I want to know what she thinks about Michaela using assistive technology. This teacher’s program is very unique. IEP’s are set to come out this week and it will give me an opportunity to review what her goals and expectations are for Michaela for the future. If I don’t get a more defined outline of the program, I will be demanding it soon. So far and like I have already mentioned, the program mainly promotes independence, life skills and later work experience. The teacher may have something up her sleeve with regards to Michaela’s academic weaknesses. It is only the first semester after all, and she most likely has been observing Michaela’s strengths and weaknesses so she can formulate a more individualized plan. I have to be realistic though: Michaela may have difficulties reading, writing, printing and typing- but she also has the tendency to mix up her words when speaking. She will also use words inappropriately (says them without knowing their meanings first). She has a definite weakness when it comes to being verbally articulate and like I said before, when she’s really frustrated, she shuts right down. So I don’t know. But we wont know unless we try something like this out. I will be researching into more voice activated/typing programs. If I can find something that fits Michaela, I will be asking her teacher for her assistance. If she agrees, that’s half the battle regarding the waiting list. If I don’t agree with her IEP expectations, I will investigate into this further. Many of these assistive technology equipment start at $300 – $1000+.

    Alright then. I’m off to bed!

    Hugs 🙂

    Comment by C'hele — November 17, 2008 @ 09:35

  10. Keep us posted on this … I’d be really interested to know how it turns out, and whether it’s an appropriate option. I really want Michaela to experience the feeling of success that she deserves. She is a beautiful spirit, and I for one want other people to be able to read and hear what she has to say. Keep me updated.

    Comment by davidrochester — November 21, 2008 @ 07:56

  11. Thank you David, I will keep everyone up to date with regards to this. I did find a couple of websites that I intend on sharing with the public so they too, can see what is available out there should thier child need assistive technology too.

    David- thank you for the beautiful and eloquent comment. Me too. A new post is forthcoming!

    Hugs 🙂

    Comment by C'hele — November 22, 2008 @ 20:43

  12. Just to let you know I am reading with interest and admiration and have nothing especially pertinent to say.

    Comment by modestypress — November 28, 2008 @ 02:34

  13. Random: and I thank you for taking the time to read this rant, lol. Its never a dull moment around my place let me tell you! Hugs 🙂

    Comment by C'hele — November 28, 2008 @ 06:51


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