Happy Memorial Day

Enjoy the day with your family and friends.    And thank you for letting me share a little of our family with you.

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I’ll Sing

8 year old autistic girl learns to talk and finds her voice…  incredibly inspirational.  Brought tears to my eyes, so I thought I’d share.  Click the link below…

http://www.youtube.com/watch?v=Jg4Sd4Pq0AM

God blessings to you all.   May we all find our gifts.

“Things that make me happy”

Overflowing bubble bath

Beau as my pillow

Bonfires

Lazy Beau

Rolling around on the grass with Mom's comforter...

My brothers

  Tony’s list of things that make him happy.   Simply said.

Riding in the car with Tony…

Tony in Bongards, MN

 

Still going on our field trips.  Thank goodness gas prices are dropping.  (However this Sebring takes E85 so that has really saved us!)   We go on 2 maybe 3 rides a day when the weather is nice.  Who would have known that this car purchase was going to be such a wonderful sensory activity for Tony?    Here you see us in Bongards — a tiny city out west somewhere.  There’s one street and a little store that sells cheese.  This is the big cow that sits next to the store.  Tony uses his trusty State Farm road atlas and he picks a direction in which to travel every day. (I’ve limited him to the SW suburbs)  I love that he’s becoming so aware of his surroundings and that he wants to explore.  We’ve pretty much hit all the western suburbs in the area — Excelsior being his favorite.  We have a route that takes us by Lake Mtka and he loves downtown Excelsior (so does Mom).  We don’t get out of the car, we just drive with the top down.  We get our daily dose of vitamin D and of Kool 108 (classic 70’s and 80’s music).  He sings, he rocks, he dances with his hands up in the air.  He’s completely euphoric. 

I have to say that it’s been great therapy for me too.  It’s really hard to take the time to go for a ride.. I mean, I need to work my business… appointments to make… presentations to do… there’s laundry… house to clean… errands to run… calls to return… bills to pay… yadayadayada.  However, in his world, this is now a necessity.  It’s something he looks forward to every day.  It’s time alone, just he and I, and it’s time spent out in the world.  What am I to learn from this? 

I guess I’m learning to just ‘let it be’.  Taking the time to enjoy this beautiful state we live in.  Taking the time to slow down… and smell the lilacs in downtown Excelsior.  Slow down to see the Farmer’s Markets.  Slow down and watch the boats on the lake.  Slow down and see the sunset out to the west.  Slow down and watch the storms approach.   Had I gotten so busy and overwhelmed with life that this seems stressful?  I guess I had…  I’m glad Tony is slowing me down.

Shifting Focus: 8 Facts About Autism that the Media is not Covering

 

This is an article I ran across online by Holly Robinson Peete, actress and Mom of an autistic son.  Thought it was worth sharing..

2010-03-16-withboy.jpg

Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy’s phone call shortly after her son’s diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.

We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I’d be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she’d help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!

Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.

To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:

1. Autism Is Unaffordable

I’d love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour – many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then…

Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees… even in good times.

Families live on pins and needles with hopes that they’re doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.

2. Parental Guilt

So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be “recovered” and nothing, I mean nothing, makes a parent feel more guilty than thinking you could’ve “fixed” your kid but… well you didn’t or couldn’t afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word “no” appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don’t get me wrong, I am always elated for any child’s success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom’s opinion, keeping it real…

Alas, accepting my son’s progress or lack thereof is the key to moving forward with my head up.

3. Puberty Plus Autism Can Be a Volatile Mix

Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.

A dear friend of mine and autism “Superdaddy” explains puberty’s effect on autism like this: “[Puberty is] an ‘oy vey’ for a normal child but it can send hormones racing in a child with autism that they don’t know how to deal with.”

The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.

Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn’t anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let’s get that out there, please.

4. Minority Children are Diagnosed with Autism Years Later Than Other Children

There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:

if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.

That’s why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I’ve visited black churches with this message letting them know they can be extremely helpful in this effort. We can’t allow the window for “age-appropriate, effective therapy” to close on these kids.
2010-03-16-NotMyBoy2.jpg5. Autism Can Be Tough on A Marriage

Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family’s Journey with Autism (Hyperion).

I want to shamelessly plug my former NFL QB’s evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that… a book like this might have offered me that insight earlier on.

Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.

2010-03-16-MBCCover2.jpg6. Autism’s Effect on Siblings

We don’t see too much coverage about what the siblings of autism endure.

Ruined play dates, family outings cut short due to a brother’s or sister’s public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma… the list goes on.

It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.

I’m so hopeful this will change a bit with the release of My Brother Charlie, a new children’s book co-written by my daughter and me. (We’ve been a busy family!) Told from a sister’s perspective, in My Brother Charlie Callie acknowledges that while it hasn’t always been easy for her to be Charlie’s twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn’t already such a book in children’s libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.

7. Adults Living with Autism

The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It’s my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.

Here are a few sobering facts:

•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)

•There is an 81% unemployment rate among adults with autism (CARD)

•78% of families are unfamiliar with agencies that could help them (CARD)

•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future

The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.

We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!

How glorious would it be to get more media attention on this particular issue.

And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger’s syndrome to live and thrive on his own.

8. Autism Advocates Who Actually Have Autism:

What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that…

I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I’ve had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word “cure.” Many have expressed that they feel this was their destiny, that they were born this way so stop trying to “cure me.” Whatever our views or personal agendas, we have to respect that.

Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. “Come into my world!” one 25 year old young man with Asperger’s told me passionately.

My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I’ve learned in any book! You go, Carly!

I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.

Bottom line: Their opinions should be heard, valued and included.

So here’s to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!

Holly Robinson Peete
Actress, Author, Proud Mom of Four

The Invisible Woman

One of my best friends sent me this link.   I really needed to hear this today.   Thought I’d share.  It’s a very, very powerful message.

Keep building! 

http://www.youtube.com/watch?v=YiofUjp1SAA

Why take vitamins?

Depleted soils – why the fruit and vegetables we eat may be doing more harm than good!

We’ve all heard and read it countless times – “the best way to maintain health is to eat a balanced diet including lots of fruit and vegetables”. Of course, this is absolutely correct, so long as those fruits and vegetables are not grown on the mineral-depleted soils that necessitate todays ever-increasing range of chemical “fertilizers”.

Why is the soil depleted?
As long ago as the 1920s, the British and US Governments were warned by nutritional experts that the soils on which most crops were grown were so deficient in mineral content that the foods grown on them contained less than 10% of the vitamins and minerals they should have. The intention of these reports was to highlight the problem so that remedial action could be taken to remineralise the soils, leading, once again, to naturally healthy fruits and vegetables.

Unfortunately, neither Government took any action to correct this problem, and as a result, which has been intensified by modern intensive farming methods, the fruits and vegetables not only have little or no vitamin and mineral content, but they are routinely sprayed with such a broad selection of chemicals that they are actually poisonous.

How can plants grow without vitamins and minerals?
Good question.

Most plants require only three nutrients to grow, namely nitrogen, phosphorus and water. In the presence of these nutrients, virtually all plants will grow into what appear to be healthy, nutritious adult specimens. However, if the minerals found in their natural habitat are not present, such plants and their relevant fruits and vegetables will be nutritionally “empty”.

As a result of this, these plants are less able to defend themselves against natural predators and are susceptible to insect attack and damage from viruses / bacteria. In order to control this, insecticides, antifungals, antibiotics, pesticides and dozens of other categories of chemicals have been designed to limit the damage done to plants by their natural enemies.

Unfortunately, many of these chemicals have not been properly tested to assess their effects on either plant or human health, and virtually none have been tested in combination to assess their combined effects. The result is that most fruits, vegetables and other plant-based foods are so contaminated with a huge variety of chemicals, and so deficient in nutrient content that they actually do more harm than good.

How do we address the problem of depleted soils?
The simplest (and cheapest) way to address the depleted soils problem is to do what was suggested in the 1920s – “repair” the soils our fruits and vegetables are grown on by remineralising them and using organic waste products to put back those nutrients necessary to plant, and therefore human (and farmed animal) health.

Until this is done on a massive scale (and that is unlikely – US farmers in particular are relying ongenetically modified (GM) versions of plants to overcome increasing growth and yield problems due to depleted soils) we have little alternative than to avoid the worst of the chemicals and to replace the missing vitamins and minerals through the use of nutritional supplements.

Taken from – http://www.natural-health-information-centre.com/depleted-soils.html

For the best vitamins featuring a patented delivery system (which means your body will actually absorb them), email me at becki@theothersideofnormal.com for info

Becki

“It’s Amazing”

I first heard this song on the Sex and the City soundtrack.  Girly, I know.  But for some reason, this song has really hit home to me.  It’s on my iPod and I listen to it as my cool down after my workouts.  It’s my attitude adjustment – my soul time.   I think the words hit home for so many different things — whatever your passion is — think of it as you read these lyrics:

“It’s Amazing”  by Jem

Do it, now
You know who you are
You feel it in your heart
And you’re burning with ambition

But first, wait
Won’t get it on a plate
You gonna have to work for it
Harder and harder

And I know
Cause I’ve been there before
Knocking on the doors
With rejection (rejection)
And you’ll see
Cause if it’s meant to be
Nothing can compare
To deserving your dreams

CHORUS:
It’s amazing
It’s amazing
All that you can do
It’s amazing
Makes my heart sing
Now it’s up to you

Patience, now
Frustration is in the air
And people who don’t care
Well it’s gonna get you down

And you’ll fall
Cause you will hit a wall
But get back on your feet
And you’ll be stronger
And smarter

And I know
Cause I’ve been there before
Knocking down the doors
Won’t take no for an answer

And you’ll see
Cause if it’s meant to be
Nothing can compare
To deserving your dreams

CHORUS 1x

(synthesized)
Don’t be embarrassed, don’t be afraid, don’t let your dreams slip away.
Don’t be scared of using your gift — everybody has a gift.
Never give up, never let it die,
Trust your instincts, and most importantly…
You’ve got nothing to lose, so just go for it!

My Typical Day

I ran across this short story that my husband, Dave, wrote through the eyes of  Tony about 3- 4 years ago, about the time Dave had to make an unexpected career change.  This story made me chuckle and brought back lots of memories.  It’s interesting to read this from Dave’s account.  He used to leave for work at 4 or 5 am, so he was not around in the mornings and an early bed time was right in sync with Tony’s bed time.  It also seemed at the time that our life revolved around the Mexican restaurant, Don Pablos.  We used it as a reward for good behavior, or sometimes as a ‘treat’ for everyone.  By some miracle, Tony has given up that obsession since there is nothing gluten-free at Don Pablos.  🙂

“My Typical Day

By

Tony Becker 

 Hi, my name is Tony.  I’d like to walk you through a typical day of my “quirky” family. It all starts with my mom and dad shutting their loud radio off every morning about 4-5 times.  Then they finally get out of “my” bed, the one that they started sleeping in and I took over.  Mom starts out in the shower while I pull and poke at my dad’s arms and all that loose skin on his elbow.  He seems to get irritated but I figure if he doesn’t like it then he can get out of “my” bed.  Anyway, I turn on the TV and start to watch Magic School Bus, dad tells me to turn it down but I know he really likes it because I always see him watching my videos over my shoulder, which is not permitted in my house. 

Now it’s finally time for me to get in the shower.  I take about a 20 minute shower, which is pretty cool because there was a time when I couldn’t stand to have water poured over my head, I would completely freak out and my dad would become a basket case.  I like to sing in the shower because I have a fabulous voice, and no one else is allowed to sing in this house because they have such bad voices, except my mom, she’s pretty good.  When I’m done with my shower I go singing through the house as to wake up everybody.  I make such a good alarm for everyone.  I sing for Michael and pounce on Joey to wake him up.  I then go down to the kitchen to get on moms computer, which is slower than @#&*.   Mom gives me my vitamins and I out think the computer, all while the rest of the people are getting up.  Dad try’s to sneak down into the kitchen but I don’t allow him in, because he hasn’t been around for the first 13 years of my mornings so why is he now trying to get in “the inner circle”.  Mom pours me a bag of cereal and we head off to school.  Before I fill you in about my school day, let me tell you about my brothers. These guys are my 2 best friends

    Michael, now 16, is like another parent, so kind but can discipline with the best of them.  “I’m going to call dad” he threatens, while I scream at 100 Decibels, NOOOOOO!  One minute I will be wrestling Michael and the next he’s cooking me a pizza.  Michael is always making sure I’m safe.  You know, I can get into a lot of stuff.  He is one of my 2 best friends.  Now let me tell you about the other one.  His name is Joey, and he is still here.  I don’t know why he hasn’t left yet.  For so long, it was just Michael and me but then mom’s stomach got big and now there is another person in this house.  Joey is “a little brother” you might say.   He does things to annoy me, like be in the same room as me, yawn, and stretch.  He is always there though when it’s time for bed.  I lay in the same bed as Joey and my dad until they fall asleep then I go back in to “my” bed.

    Getting back to school, mom drops me off at the curb and I slowly walk in, only to find a chunk of snow to pick up and eat.    My classes are pretty easy and I do like some of them but there are others that I could do without, but enough about school.  I get home and get right on that slow computer again.  This time I’ve got 1 movie running in 8 different frames with the scenes 2 seconds apart, my dad is amazed and the computer has gotten slower yet.  I slam my fist down on the table and scream “GOD…” when my mom stops me and I finish with “…BLESS THE LORD, AMEN.”  It all works out after all and I’m back to it.  I begin to think “I’m hungry” so I go to the cupboard and get some chips and salsa.  After I finish the first bowl of salsa, I ask “What’s for dinner?”  I would think that by the looks of it these other people in the house aren’t really doing anything, so why not cook me dinner.  Dad asks me,”what do you want?”, and I answer “How about… Don Plablos?”  Dad tells me no, again, but I can understand why, he keeps saying he’s putting on too much weight.  So off we go to Don Plablos.  “Where’s mommy?” and dad tells me, she’s at an appointment.  “Where’s mommy?” and dad tells me again she’s at an appointment. 

Apparently this guy doesn’t get it.  “Where’s mommy?” SHE’S AT AN APPOINTMENT!” Michael yells.  Now is a good time to hit Joey; he just yawned.  Michael orders me the same thing at Don Plablos, “he’ll have the chicken strips with the alphabet tater tots, and could you bring some more chips and 2 more salsa, he goes though them fast.”  After I finish 5 cups of salsa and 3 baskets of chips, I figure I’m not   real hungry tonight. “A big box”, I tell the person that keeps coming with the chips.  “No more Joey; give me a kiss”, I yell, while I see if his head is removable.  I fill the box with chips and salsa and the rest of my chicken and alphabets.   It’s time to go home now, but wait I need to go to the bathroom, and once again my big brother Michael takes me.  So we’re on our way home because it’s time to go to bed, and bedtime is 9:00 at the latest.  “Joey, time for bed.   Daddy, lay down.”   After the day is done, I think I’ve got a pretty nice life.

 Thanks  Mom, Dad, Michael and Joey,   I Love You.”

Field Trips

It’s been a couple of crazy weeks… May is here and we are counting down the days until summer vacation. Well, the boys are. I’m a little panicked as I need to get some things on the schedule to keep Tony’s routine steady. He’ll be in summer school, but that’s just a couple of hours per day. I’m looking for affordable things. There are many wonderful camps for kids with autism, but between you and me, they are outrageously priced. I’m sure it costs a ton to hire staffing that is one to one with enrollment. I’ll keep looking.

Lately, Tony’s new ‘entertainment’ has been to go on daily field trips (car rides). We have been hitting just about every little city in the southwest suburbs of the Cities. He loves the old buildings, the small towns, the country fields, and hills. And I must say, I’ve discovered a lot too. I’ve never really been able to venture out and just “go for a drive”. Our schedule was always so routine — there was NO deviation allowed. Is this a sign that Tony’s becoming more independent? or that he wants to explore the world around him more? Or is it related to the fact that he’s memorized his State Farm map that my Dad gave him? Is he studying the roads? counting miles? or mile markers?

I remember clearly one weekend we were driving home to my parent’s house in LC. Dave took a different way (I think there was construction)and Tony had a melt down for 2 hours. It was a very stressful drive. I think he was around 5 or 6 yrs old… now we have learned that everything is pre-planned. We warn Tony of all construction and all unexpected stops. It’s become natural for us to do that. Sometimes I look at my sibling’s families and notice just how ‘flexible’ everyone is. I noticed that they can change plans at the drop of a hat or that they can actually take 3 hours to make a plan. Everyone’s ok with that and everyone’s onboard when a decision is finally made. Not so in our house. We could never do that.

I don’t mean to sound negative, I just wanted to point out how everyone in the house has adapted to this disease. And why are we adapting? Why can’t we just fix it? Why can’t we just discipline him like we could our other two sons? Those are the million dollar questions… Those are the things that we’ve learned are so much deeper than just ‘discipline’. It’s a neurological disorder. It’s frustrating. It’s maddening. And I’m just one of millions of Mom’s and Dad’s out there who are dealing with the same things — day in and day out. We don’t have meetings about it and we don’t talk about it. We’ve all just adapted. Why? To avoid a meltdown. To avoid stress. To avoid pain.

I think I was better at pushing him when he was younger. These teenage years are tough REGARDLESS if a child has a disease or not, right? Hormones and autism… not a pretty site. 🙂