Attitude

I am humbled by the response from my last blog post, and I have gained many new readers.  Welcome!  I’m so glad you’re here! 

We’ve had a few rough days here… no particular reason (except a full moon?).  I have this nagging headache that won’t go away, and I know what it is.  Worry.  Frustration.  Fear.  Sometimes this autism thing can really burn you out, but as I sit at my computer tonight, I couldn’t help thinking of my favorite quote:

The only disability in life is a bad attitude

I quote that to myself many times during the day.  It’s SO true.  Attitude can make or break your day, your life, your future.  One of the things posted in my office keeps me grounded.  I’d love to share it with all of you:

“The longer I live, the more I realize the impact of Attitude on life.  Attitude, to me, is more important than facts.  It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do.  It is more important than appearance, giftedness, or skill.  It will make or break a company… a church… a home.  The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day.  We cannot change our past… we cannot change the fact that people will act in a certain way.  We cannot change the inevitable.  The only thing we can do is play on the one string we have, and that is our Attitude.  I am convinced that life is 10% what happens to me and 90% how I react to it.  And so it is with you… we are in charge of our Attitudes.”   ~ Charles Swindoll

I hope this helps you as much as it has helped me today… and many days in the past. 

“Grant me patience for all my blessings…”

Becki

The wonders of Para’s

As I was digging through a closet last weekend, I happened upon a large stack of notebooks that literally took my breath away.  They were all from Tony’s elementary school years.  One of the best communication tools we used back then was notebook that would travel with Tony to and from school.  His para-professionals (or paras, as we lovingly call them) would write me detailed notes of Tony’s school day, since Tony could not communicate that with us.  Back and forth it would go, filled with the good, the not-so-good and even the very bad things that happened each day. 

To say that this was important to us, is an understatement.  This was the only way we could have an insight as to what was happening at school and how Tony was progressing.  It took patience and dedication from these awesome paras to take the time, during what I’m sure was a very hectic day, to write a note to us.   I looked forward to it every day — and I always wrote back.   (Now, in 2011, it’s an email or a text to his paras and teachers)

The nice thing about the notebooks is that I have a slice in time that I can look back on and remember.  I always say that I have a “gift” of being able to forget the stressful times and move on.  I’m sure I haven’t forgotten them, but I’m just able to put them aside and move on to our next adventure.  It’s the only way I can do it.  Somethings I don’t want to recall — but others I do.  It’s nice to see all the progress we’ve made over the years, still knowing there’s so far yet to go. 

Here’s the very first page of his 2nd grade notebook.  (Keep in mind, back 10-11 years ago, autism was not in the spotlight or as common as it is now, sadly)

“Tips for Tony:

1.  If watching a video, Tony likes to watch and listen to the VERY end.  He will get very upset if the video is stopped — or done so without warning.

2.  Tony loves the computer.  It is a good calming tool. 

3.  A good technique for Tony is:  “First _________, then _________”  i.e. “First math time, then recess!”

4.  Tony may need a few verbal cues before cooperating.  He can not “read” social cues, but will mimic someone who is upset or happy.

5.  Tony needs and seeks out big, strong hugs for approval and acceptance.  Also good for calming.

6.  If overstimulated or overwhelmed, Tony may lose his cool.  Be firn and stay calm.  He is learning to calm himself.  He will feel bad about it after, and may need some physical time – i.e. swinging, jumping, running

7.  Last year, they used PECS (picture exchange communication system) to help him learn his schedule.  If something will be changing, just give him verbal warnings — “Today is going to be different, Tony”  🙂

Another entry — 9.22.00

“Dear Becki and David,

     I want to tell you how wonderful Tony is!  Every day, we are seeing progress.  He is adapting to schedule changes throughout the day, answering questions with yes or no, sitting quietly in a large group, making eye contact when Mrs. J is speaking… the list goes on and on…  He makes us smile all the time!

    I want to commend Mrs. E. for caring for Tony so much! She is dong a wonderful job mainstreaming Tony into the regular ed. classroom.  She works very hard to make each day go smoothly!  Gracias, Mrs. E.!!  (this is the year Tony learned to speak Spanish – Mrs. E. was  bilingual)  You are appreciated!!

Mrs. S.”

I believe I cried when I read that.  We were struggling so hard in those early years just to get Tony to cooperate and just “be” in our world. 

My wish is to find all of Tony’s paras from all his years in school (including early intervention at age 2) — 1995 – 2011 — and express my thanks to each and every one of them.  We could not have made this journey without them!  We know just what a little stinker our Toneman can be and we know that your job was not easy.   Rewarding?  yes.   Easy?  not for a minute. 

As we come to the last few months of Tony’s high school days, I can’t help but wonder how lucky we were through the years to have such great paras.  If you are reading this, and you’re one of them… God bless you.  We thank you for your dedication to our Toneman. 

Becki

You can see by this picture, just what a little stinker he was (and is)! Tony - 10 yrs old - 2003

 

Love in Action

 

From the Autism Speaks Blog, Posted: 13 Jan 2011 11:20 AM PST

This Family Services blog was written by a woman inspired by her friend, the grandmother of a young boy with autism.

“I sit watching Jeremy always so busy with his repetitive activities while my mind races with thoughts.  Oh God, where is the place for an Autistic child in this world?  I am at the end of my rope, I don’t know what else to do.  I try to be positive and encouraging.   I am always helping and seeking ways to make him better.  I am so anxious I can’t sleep well at night for thinking about all our dreams for him that won’t come true, what he will not be able to do and ways to change these potential outcomes of his life. As I sadly ponder these thoughts, in my heart I hear these words:

The place for Jeremy is in your heart; it’s in mine.  Each of my creations has a unique place in my world, a purpose to be found.  Help him find his!  Trust me, I will guide you.  He was not sent to you to fulfill your worldly dreams.  He has come to be a special part of your life.

He has a sweet spirit that lives inside of him, one that can be overshadowed by fear but nurtured by love.  Learn to recognize it, see it, savor it and watch Jeremy become what I created him to be.  You are loving him the way he was created to be loved, continue.

How can I even use trust and Autism in the same sentence?  How can I acknowledge you, God, in Jeremy’s Autism for when I do I’m angry with you for letting it happen!  What do I need to know? What good can I do here?  If I am loving him they way he was created to be loved, then, Dear God, what can I do differently?

Then I remembered in my thoughts a Bible verse I heard a lot in church as I grew up.  “Love is patient, love is kind…love always hopes, always trusts, always protects and always perseveres.” I hear words again in my heart: 

To care for Jeremy, to make a safe place for him, and to provide what you can is one of the most life-giving, life-receiving things you can do.  For this is love in action.  Now, let my love nourish you as your love nourishes Jeremy.

After I hear these words I remember something else from the Bible…. “Be not anxious for anything but in prayer and thanksgiving make your requests known to God and the peace of God will guard your heart . . .”

While these thoughts are in my mind, I have been watching Jeremy line up his trucks.  As if on cue, he looks up at me and gives me one of those rare, beautiful smiles.  I think from my heart Thank You!”

What a beautiful explanation of thoughts that run through my mind, and thousands of others, as we try to make sense of this ‘world’ our children live in.  I had to share this as I thought it was very comforting.  To all my readers – and especially those raising children with autism — remember this:  the only disability in life is a bad attitude.  Keep the faith! 

Becki 

Top 10 Facts About Autism

(an old article, but a very good educational piece)

By Lisa Jo Rudy, About.com  Created: June 21, 2007

Parents of children with autism quickly become authorities on the subject. But what about in-laws, teachers, coaches, and cousins? Few people outside the immediate family really want to read 20 closely written pages from the National Institutes of Health. This brief, pithy article provides the bare bones basics for a quick read – along with links to more in-depth information for those who want to know.

1. Autism Is a ‘Spectrum’ Disorder

People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. A disorder that includes such a broad range of symptoms is often called a spectrum disorder; hence the term “autism spectrum disorder.” The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another’s perspective, etc.).

2. Asperger Syndrome is a High Functioning Form of Autism

Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname “Geek Syndrome”).

3. People With Autism Are Different from One Another

If you’ve seen Rainman or a TV show about autism, you may think you know what autism “looks like.” In fact, though, when you’ve met one person with autism you’ve met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays – and that’s it.

4. There Are Dozens of Treatments for Autism – But No ‘Cure’

So far as medical science is aware, there is at present no cure for autism. That’s not to say that people with autism don’t improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments. Treatments may be biomedical, sensory, behavioral, developmental or even arts-based. Depending upon the child, certain treatments will be more successful than others.

5. There Are Many Theories on the Cause of Autism, But No Consensus

You may have seen or heard news stories about possible causes of autism. Theories range from mercury in infant vaccines to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

6. People Don’t Grow Out of Autism

Autism is a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But a person with autism will probably be autistic throughout their lives.

7. Families Coping with Autism Need Help and Support

Even “high functioning” autism is challenging for parents. “Low functioning” autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

8. There’s No ‘Best School’ for a Child with Autism

You may have heard of a wonderful “autism school,” or read of a child doing amazingly well in a particular type of classroom setting. While any given setting may be perfect for any given child, every child with autism has unique needs. Even in an ideal world, “including” a child with autism in a typical class may not be the best choice. Decisions about autistic education are generally made by a team made up of parents, teachers, administrators and therapists who know the child well.

9. There Are Many Unfounded Myths About Autism

The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such “always” and “never” statements simply don’t hold water. To understand a person with autism, it’s a good idea to spend some time getting to know him or her – personally!

10. Autistic People Have Many Strengths and Abilities

It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you’ll ever meet. They are also ideal candidates for many types of careers.

 
Just more facts — hope this helps
  
Becki
  

Vaccinations

It has to be said…  there is so much controversy out there right now arguing whether vaccines play a role in the outbreak of autism.  From Rush Limbaugh to the Today Show, people are spouting their opinions about an old study found to be fraudulent. 

Truth be told:  it’s just too much stress for me to even take this on.  I lost too much sleep over it years ago… and now it just makes me angry.  SOMETHING is causing autism.  Vaccines are big business.  How could we ever take them on?  They help many — but are we so ignorant to think that they will not harm any?  I know the numbers of those harmed are low, but what if you become a “number”?

I’m sickened by all the finger-pointing.  I’m tired of studies done to prove that vaccines are not the cause of autism.    All I know is, consequently, Tony’s first signs of autism happened shortly after he received his MMR shot, while he was on an antibiotic — sick with an ear infection.  Coincidental?  Not sure.  Is it what CAUSED his autism?   Only one person can answer that for me… the good Lord.   Will I point a finger and BLAME vaccinations?  No.  I won’t.

My stand is simply this — vaccinations MAY have played a part in Tony’s autism.  It may be a piece of the puzzle. 

Would I choose to vaccinate again?   I already did.  Both of Tony’s brothers received all of their vaccinations.  One is older, one is younger.  But with our younger son, I was extremely knowledgable and insistent that they separate all vaccines and do them on OUR time schedule, making sure he was strong and healthy when he received them.  Neither of Tony’s brothers have autism.

I agree with Autism Speaks on this one: 

“Many studies have been conducted on large samples to determine if a link exists between vaccination – specifically the measles-mumps-rubella (MMR) and thimerosal-containing vaccines – and increases in the prevalence of autism. These studies have not supported a link between either the MMR vaccine or thimerosal and the increased prevalence of autism. The present state of the science indicates that the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism. It remains possible that specific genetic or medical factors present in a small minority of the general population might lead to an adverse vaccine response.  Autism Speaks and other organizations are investing in research to determine whether subsets of individuals might be at increased risk for developing autism symptoms following vaccination. In parallel, it is important to make a sustained investment in monitoring and optimizing vaccine safety relating to variations in manufacture, new vaccines, and new combinations of vaccines.

Autism Speaks feels that it is important to continue conducting research to develop effective treatments for individuals with autism spectrum disorders across the lifespan. We support a wide range of studies that are exploring behavioral, biomedical and pharmacological treatments. Parents need and deserve research to answer questions regarding what treatments are effective for their child.”

I know I open myself up to criticism, but frankly I’m just too exhausted to argue anymore.  I’m more focused on ‘how do we survive’. 

Was it THE cause?  We may never know.  But in the mean time, can we all quit fighting over this subject and just get to work on finding a solution?  Please?

Just my thoughts…

Becki

Autism Speaks is the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

A New Year

“It’s not how heavy the load, it’s how you carry it”     ~ John Maxwell

2011 marks the beginning of new adventures in our house.   This year will hold quite a few life changing events.   Tony’s high school graduation is one of them.  I can’t help but think about this late at night… are we READY for the next step?  What IS the next step? 

My business and my blog are also in line to take on new heights this year.  It’s a very exciting time!  My blog received the WOW FACTOR award from wordpress.com, which means that I had a very successful first year.   Thank you for that!  I guess when you write for therapy and release, you end up educating others along the way.  And that was exactly my goal with this blog.  I know a lot of people are curious about autism — especially about teenagers and young adults with autism, as there seems to be very little written about that subject. 

Well, stay tuned because it’s about to get better!  I’m upgrading my blog to another site soon where I’ll be able to post clearer and larger pictures.  I’ll even be able to post educational links and helpful hints for parents, educators, and even spectators. 

I appreciated you all and ask you to keep reading!  My goal is to post more frequently and to really let you into our world.  Sometimes it frightens me because it IS so personal… but I realize that the only way to raise awareness is to honestly open our hearts and let others know exactly what life with autism is like. 

So, yes, heavy is the load… but mighty are the supporters.   God bless you all!

Becki