A Camping We Will Go

A camping we will go

Hi ho the dairy-o a camping we will go.

Or should I say a camping we went.

On Saturday, we packed up Georgette and headed to Fox Ridge State Park just outside Charleston, IL where our oldest son lives.  He has autism and depending on how he’s doing on the day we visit him, he may or may not be in the mood for public appearances.  Having Georgette offers us the opportunity to bring him out to the campground for visits and we can either stay inside, hang around the campsite or take a walk.  It provides him some consistency when we visit and for him, that a good thing.   I’m happy to say that he was impressed with Georgette and enjoyed the visit.

This was also our first official camping trip with Georgette and thanks to Mother Nature, we broke her in good.

When we arrived, the sun was shining and the kids were more than happy to run off and explore the playground.  Within 30 minutes or so, the sun disappeared and the clouds began to role in.  Before long, our beautiful sunshiny day was replaced by a severe thunderstorm.  Buckets of rain fell from the sky, accompanied by plenty of thunder and lightning.  The kids sat inside coloring and eventually decided they wanted to watch a movie (and yes, I’m aware that there are those that don’t feel it’s camping if you are able to watch a movie at the campground).  I happen to have a couple of kids who are very afraid of storms, so a movie was a very nice distraction.

I’m also happy to report that Georgette handled the storm beautifully.  At one point the power at the campground went out, which meant Georgette lost power.  In that moment, I was so happy that we had a surge guard hard-wired in.  The power went out a second time this morning and everything is still working fine.

Although the weekend wasn’t a complete wash-out, the sun never came back out to see us.  That didn’t stop the kids from running out and playing when the rain wasn’t falling from the sky.  That quickly made some new friends at the campground, including this guy.

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He (or maybe she), was an exciting discovery.

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And apparently he liked Lili.

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One camping trip under our belts and we learned a lot, which will only make our future camping trips that much better.

I also want to add that even if our son didn’t live in Charleston, we would definitely return to Fox Ridge for camping.  It is a beautiful state park, with a well-kept, clean campground.  The camping spots are level and surrounded by trees.  There are hiking trails (although we didn’t get a chance to check them out) and the roads are great for those who like to get in some bike riding.  In the center of the first loop of camping spots, is a playground.  There are little trails cut thru the trees and vegetation at each camping space that leads to the playground.  The kids really enjoyed

I look forward to our next trip to Fox Ridge and hopefully we’ll see more of Mr. Golden Sun.

First Time Pop Tarts

Visiting our son Ryan, can be a bit challenging. The town he lives in is a college town and finding places to take him that he can handle are somewhat limited. For those who haven’t been reading my blog long, Ryan is our adult son who has autism. He is at the lower end of the spectrum, non-verbal, with a related seizure disorder. Our visits are a change in his routine and while he typically does well (thanks to staff reading social stories to him prior to our visits), we still have to make sure that we’re doing things his sensory system can handle.

When the weather is nice and warm, our visits typically include a trip to the park. It usually works well for both him and our girls. In the winter, a visit to the park just isn’t feasible, so last year my husband suggested that we include an over-night stay at a local hotel to our visits. This allows us to have a nice long visit with him, in a nice quiet environment. Okay, it can only be so quiet with my crew, so I should say in a less stimulating environment.

I really am getting to the Pop Tarts part of this post.

We typically stay at the same hotel for our visits, but there was no room at the inn for our last visit so we had to go to a hotel we had not stayed at before and won’t be staying at again. While we were getting ready to leave, my husband went to check out the free breakfast. The choices were really bad, except for the Pop Tarts he brought back for the girls. Not that Pop Tarts are necessarily a great choice, especially when you’re trying to avoid high fructose corn syrup, but at least our hungry girls would have a little something until we could check out and get them breakfast. It was also the first time they had ever had a Pop Tart and believe it or not, they liked them.

Pop Tarts are something that I just don’t buy.  Not that I haven’t bought them, because I have.  Several years ago I was buying them on a regular basis, but I hadn’t bought any since Lili came home, so it’s been at least 5 years since they’ve been in our house.  Let’s face facts, Pop Tarts are tasty and convenient, but we just don’t want those ingredients in our bodies on a regular basis.  But did I mention Pop Tarts are tasty, so having them from time to time would be nice, as long as they are being made in my kitchen with my ingredients.  Today, that happened.  The girls and I made our own Pop Tarts.   They didn’t necessary look pretty, but they sure were yummy!!!!

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We made cinnamon sugar, strawberry and blackberry Pop Tarts and as you can see, we made them in various shapes and sizes.

Like most things you try the first time, it was a learning experience.  We learned to not over-fill and to make sure that the sides are well crimped.  Otherwise you’ll end up with them coming apart and filling oozing out the sides.  Of course my 5-year-old told me, “That’s why they call them Pop Tarts.”  LOL!!!!  In our case, they were certainly popping.

The crusts were nice and flaky, but the one thing that would make these even better is filling them with jam or preserves made from fruit in our garden.  Until then, we will definitely continue to make our own Pop Tarts because they really are so much tastier than much better than those pretty ones that come in a box.

Here is the recipe I used:

Pop Tarts Weeks’ Style

1-1/2 c sifted flour
1/2 t salt
1/4 c shortening or 1/4 cup unsalted butter
6 T cold water

Combine flour and salt in bowl. Add shortening or butter and blend with fork, or pastry cutter until fairly coarse.

Add water, 1 T at a time.  Gently mix dough after each addition until dough forms a soft ball. (If you prefer, you can prepare the dough in a food processor. Use the pulse button just until it starts to pull away from the sides. Be very careful not to overwork the dough.)

Place dough on a lightly floured surface and roll into a square/rectangle. Cut out long strips about 2 inches wide, and 3 inches long. Repeat till you run out of dough.

Glaze:

1 c powder sugar
1/4 c Milk

Place powdered sugar in bowl. Pour milk slowly and stir.    You want the consistency to be like thick syrup.

Assemble: Take one pie crust rectangle, fill with a teaspoon of jam. Cover with another piece of pie crust. Crimp all four edges. Repeat until you run out of pie crust. Bake at 450F for about 7-8 minutes or until lightly brown.

Allow to cool slightly then drizzle with glaze.  Add sprinkles or sparkling sugar for added decoration.  Then enjoy!!!

Filling for Cinnamon Sugar:

5 T packed dark brown sugar
5 t granulated sugar
1 T all-purpose flour
3/4 t ground cinnamon
1 T Butter, melted

Mix all ingredients until well combined then divide evenly among the pie crust pieces.  Place another pie crust piece on top and crimp sides.

For the glaze, add 1/2 t cinnamon to the glaze recipe above.

Another Good Year, Another Good Report

Every year about this time we attend Ryan’s annual ISP (Individual Service Plan) meeting.

In this meeting we discuss how he’s done over the past year and his goal for the upcoming year.  For those who haven’t been following my blog, let me give you some history and information.

Ryan is our oldest son.  He is 31 years old (yes, I have a 31-year-old and a 3-year-old).  Ryan has autism and functions at the lower end of the spectrum.  He is non-verbal and has a related seizure disorder.  He is also a client of Charleston Transitional Facility (CTF) in Charleston, IL and resides with 6 roommates and full-time staff in one of CTF’s homes.

CTF isn’t the first agency to provide services for Ryan.  We began applying for post-high school services before Ryan graduated.  We also began looking at agencies who could provide work and residential services.  The first agency was a no-go, primarily because they were having severe financial difficulties.  Eventually, they closed their doors.  The second agency was decent.  It was close to our home, they seemed willing to work with us and were up to the challenge of assisting Ryan in meeting his full-potential.  We completed the necessary paperwork and began to slowly transition him into his new home with the agency.  All went well in the beginning, but over a 4 year period, things went downhill.  It became increasingly evident that the agency was not in business to provide services that were in the best need of all their clients.  For those clients that were more challenging, like Ryan, they were big believers in getting psychiatrists involved to help medicate those clients into compliance.  We were in a tough spot because not medicating Ryan meant no services with the agency and no services put Ryan at risk of losing his funding for services.  However, as time went on we lost the Ryan we knew to stronger and stronger medications.  We HATED it.  We felt caught!  We were in a system that held us prisoner.  Ryan needed services.  We could not pay the thousands of dollars it would cost us out-of-pocket to pay for these services and we could no longer provide for his daily needs at home.  His needs were just too many for two people.  We were at a loss on what to do.

Then one day the agency asked us to come for a meeting.  It took them all of 5 minutes to tell us they were discontinuing Ryan’s services.  His needs were just too much for the agency and all their attempts to medicate him into compliance weren’t working.  They needed to do what was best in order to keep their staff and Ryan was detrimental to their cause.

We left that meeting in fear.  We had no idea what we were going to do.  We had a little girl at home and one on the way.  We had absolutely no idea how we could possibly bring Ryan home and care for him with two little ones at home.  We knew we had to do everything we could to find a new agency before Ryan lost all his funding for services so I immediately began scouring the internet trying to find any agency within the State of Illinois that knew anything at all about Autism and might be willing to accept Ryan as a client.

As the parent of an adult child with autism, there is this weird disconnect between the part of me that is always responsible for caring for my child and the part of me that realizes it is in everyone’s best interest for my child to move on and be cared for by a staff of individuals who are better equipped to provide a level of care I can no longer provide.  I also realize that my child deserves to have his own life away from mom and dad just like every other ‘normal’ adult child.  There is a lot of emotion involved, especially as I searched for a new agency.

By that afternoon I had made contact with three potential agencies.

We started with another agency closer to our home.  We went to visit.  We stalked to the director, supervisors and staff.  We took Ryan for visits, but after a few visits it became increasingly clear that this agency did not have enough experience and would not be able to meet his needs, so we moved on.

Our next stop was a meeting with the director and management at CTF.  The hurdle we had to jump was the fact that the agency was over 2 hours away from our home.  How could we stop in for visits?  How could we see Ryan as often as possible?  Ultimately, we realized that finding an agency that we could work with and an agency that could provide good services to Ryan was the most important thing so we made the drive and sat in yet another meeting.  The difference this time was leaving that meeting with a true feeling of optimism.  This was the first agency we had ever spoken with that ‘got it.’  It was very evident that they understood.  They understood autism.  They understood our frustration.  They understood our concern.  We didn’t know for sure this would work out, we weren’t absolutely sure they believed we were being honest about our concerns and complaints about his current agency, but we felt good about how things went when we left.

We also knew that the next steps in the process were vital and while still feeling optimistic, we were also fearful that this could end up being yet another dead-end.

The first thing that had to happen was a visit with Ryan at his current home.  We meet her at his home along with the site manager.  To say this meeting went well was an understatment.  The site manager couldn’t have done any more to prove to this woman just how much they didn’t understand Ryan or autism.  A short time into the visit she felt CTF would be a much better program for Ryan and they wanted to work with us and more importantly they wanted to work with Ryan.  This was the light at the end of a very dark tunnel.

Fast forward to yesterday.  Ryan has been with CTF for 3 years  and there have been many ups and downs.  Two things have remained consistent are thhe agency’s committment to Ryan and Ryan’s consistent improvement  during the time he’s been there

Yesterday we sat in another meeting listening to each staff member in attendance talk about Ryan as we set his goals for the upcoming year.  We were not hearing stories of a man under the influence of strong medications meant to drug him into compliance.  We are no longer seeing a man unhappy and lashing out as he tries everything he can to find a way of communicating his wants, needs and feelings to those around him.  We weren’t hearing about a man sitting with staff in a house or apartment, away from others.  Instead, we were hearing about Ryan.  We were hearing stories him going shopping and to movies.  We were hearing about his successful days at day training.  We were hearing how he has put 20 lbs on over the last year (for me 20 extra pounds would not be a good thing, for him it’s a great thing).  We heard about stories of staff asking to be his one-on-one.  We heard about the plans staff have for adding more supports to make his life easier and better.  We heard the staff member as she leaned toward me se she said sincerely, “He’s my favorite.”

The Ryan who was once hidden away by an agency and held hostage by a system that doesn’t work for the good of those who need it most, has broken through the barriers.  He has been given a new lease on life and he is doing better than we had hoped.  We have Ryan back and look forward to seeing him grow into the best Ryan he can be.

Thank you CTF for being part of Team Ryan!!!!!

Root of Autism

Having a child with autism is cause for me to always be on the look-out for information on the latest research and findings.  Today I came across a New York Times article that I found fascinating and know others who would be equally as intrigued to read some of the latest news and information in research.

Take a few minutes to read the article and then let me know what you think.

http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=1&pagewanted=all

An Immune Disorder at the Root of Autism

By MOISES VELASQUEZ-MANOFF
Published: August 25, 2012

IN recent years, scientists have made extraordinary advances in understanding the causes of autism, now estimated to afflict 1 in 88 children. But remarkably little of this understanding has percolated into popular awareness, which often remains fixated on vaccines.

So here’s the short of it:  At least a subset of autism – perhaps one-third, and very likely more – looks like a type of inflammatory disease.  And it begins in the womb.

It starts with what scientists call immune dysregulation. Ideally, your immune system should operate like an enlightened action hero, meting out inflammation precisely, accurately and with deadly force when necessary, but then quickly returning to a Zen-like calm. Doing so requires an optimal balance of pro- and anti-inflammatory muscle.

In autistic individuals, the immune system fails at this balancing act. Inflammatory signals dominate. Anti-inflammatory ones are inadequate. A state of chronic activation prevails. And the more skewed toward inflammation, the more acute the autistic symptoms.

Nowhere are the consequences of this dysregulation more evident than in the autistic brain. Spidery cells that help maintain neurons — called astroglia and microglia — are enlarged from chronic activation. Pro-inflammatory signaling molecules abound. Genes involved in inflammation are switched on.

These findings are important for many reasons, but perhaps the most noteworthy is that they provide evidence of an abnormal, continuing biological process. That means that there is finally a therapeutic target for a disorder defined by behavioral criteria like social impairments, difficulty communicating and repetitive behaviors.

But how to address it, and where to begin? That question has led scientists to the womb. A population-wide study from Denmark spanning two decades of births indicates that infection during pregnancy increases the risk of autism in the child. Hospitalization for a viral infection, like the flu, during the first trimester of pregnancy triples the odds. Bacterial infection, including of the urinary tract, during the second trimester increases chances by 40 percent.

The lesson here isn’t necessarily that viruses and bacteria directly damage the fetus. Rather, the mother’s attempt to repel invaders — her inflammatory response — seems at fault. Research by Paul Patterson, an expert in neuroimmunity at Caltech, demonstrates this important principle. Inflaming pregnant mice artificially — without a living infective agent — prompts behavioral problems in the young. In this model, autism results from collateral damage. It’s an unintended consequence of self-defense during pregnancy.

Yet to blame infections for the autism epidemic is folly. First, in the broadest sense, the epidemiology doesn’t jibe. Leo Kanner first described infantile autism in 1943. Diagnoses have increased tenfold, although a careful assessment suggests that the true increase in incidences is less than half that. But in that same period, viral and bacterial infections have generally declined. By many measures, we’re more infection-free than ever before in human history.

Better clues to the causes of the autism phenomenon come from parallel “epidemics.” The prevalence of inflammatory diseases in general has increased significantly in the past 60 years. As a group, they include asthma, now estimated to affect 1 in 10 children — at least double the prevalence of 1980 — and autoimmune disorders, which afflict 1 in 20.

Both are linked to autism, especially in the mother. One large Danish study, which included nearly 700,000 births over a decade, found that a mother’s rheumatoid arthritis, a degenerative disease of the joints, elevated a child’s risk of autism by 80 percent. Her celiac disease, an inflammatory disease prompted by proteins in wheat and other grains, increased it 350 percent. Genetic studies tell a similar tale. Gene variants associated with autoimmune disease — genes of the immune system — also increase the risk of autism, especially when they occur in the mother.

In some cases, scientists even see a misguided immune response in action. Mothers of autistic children often have unique antibodies that bind to fetal brain proteins. A few years back, scientists at the MIND Institute, a research center for neurodevelopmental disorders at the University of California, Davis, injected these antibodies into pregnant macaques. (Control animals got antibodies from mothers of typical children.) Animals whose mothers received “autistic” antibodies displayed repetitive behavior. They had trouble socializing with others in the troop. In this model, autism results from an attack on the developing fetus.

But there are still other paths to the disorder. A mother’s diagnosis of asthma or allergies during the second trimester of pregnancy increases her child’s risk of autism.

So does metabolic syndrome, a disorder associated with insulin resistance, obesity and, crucially, low-grade inflammation. The theme here is maternal immune dysregulation. Earlier this year, scientists presented direct evidence of this prenatal imbalance. Amniotic fluid collected from Danish newborns who later developed autism looked mildly inflamed.

Debate swirls around the reality of the autism phenomenon, and rightly so. Diagnostic criteria have changed repeatedly, and awareness has increased. How much — if any — of the “autism epidemic” is real, how much artifact?

YET when you consider that, as a whole, diseases of immune dysregulation have increased in the past 60 years — and that these disorders are linked to autism — the question seems a little moot. The better question is: Why are we so prone to inflammatory disorders? What has happened to the modern immune system?

There’s a good evolutionary answer to that query, it turns out. Scientists have repeatedly observed that people living in environments that resemble our evolutionary past, full of microbes and parasites, don’t suffer from inflammatory diseases as frequently as we do.

Generally speaking, autism also follows this pattern. It seems to be less prevalent in the developing world. Usually, epidemiologists fault lack of diagnosis for the apparent absence. A dearth of expertise in the disorder, the argument goes, gives a false impression of scarcity. Yet at least one Western doctor who specializes in autism has explicitly noted that, in a Cambodian population rife with parasites and acute infections, autism was nearly nonexistent.

For autoimmune and allergic diseases linked to autism, meanwhile, the evidence is compelling. In environments that resemble the world of yore, the immune system is much less prone to diseases of dysregulation.

Generally, the scientists working on autism and inflammation aren’t aware of this — or if they are, they don’t let on. But Kevin Becker, a geneticist at the National Institutes of Health, has pointed out that asthma and autism follow similar epidemiological patterns. They’re both more common in urban areas than rural; firstborns seem to be at greater risk; they disproportionately afflict young boys.

In the context of allergic disease, the hygiene hypothesis — that we suffer from microbial deprivation — has long been invoked to explain these patterns. Dr. Becker argues that it should apply to autism as well. (Why the male bias? Male fetuses, it turns out, are more sensitive to Mom’s inflammation than females.)

More recently, William Parker at Duke University has chimed in. He’s not, by training, an autism expert. But his work focuses on the immune system and its role in biology and disease, so he’s particularly qualified to point out the following: the immune system we consider normal is actually an evolutionary aberration.

Some years back, he began comparing wild sewer rats with clean lab rats. They were, in his words, “completely different organisms.” Wild rats tightly controlled inflammation. Not so the lab rats. Why? The wild rodents were rife with parasites. Parasites are famous for limiting inflammation.

Humans also evolved with plenty of parasites. Dr. Parker and many others think that we’re biologically dependent on the immune suppression provided by these hangers-on and that their removal has left us prone to inflammation. “We were willing to put up with hay fever, even some autoimmune disease,” he told me recently. “But autism? That’s it! You’ve got to stop this insanity.”

What does stopping the insanity entail? Fix the maternal dysregulation, and you’ve most likely prevented autism. That’s the lesson from rodent experiments. In one, Swiss scientists created a lineage of mice with a genetically reinforced anti-inflammatory signal. Then the scientists inflamed the pregnant mice. The babies emerged fine — no behavioral problems. The take-away: Control inflammation during pregnancy, and it won’t interfere with fetal brain development.

For people, a drug that’s safe for use during pregnancy may help. A probiotic, many of which have anti-inflammatory properties, may also be of benefit. Not coincidentally, asthma researchers are arriving at similar conclusions; prevention of the lung disease will begin with the pregnant woman. Dr. Parker has more radical ideas: pre-emptive restoration of “domesticated” parasites in everybody — worms developed solely for the purpose of correcting the wayward, postmodern immune system.

Practically speaking, this seems beyond improbable. And yet, a trial is under way at the Montefiore Medical Center and the Albert Einstein College of Medicine testing a medicalized parasite called Trichuris suis in autistic adults.

First used medically to treat inflammatory bowel disease, the whipworm, which is native to pigs, has anecdotally shown benefit in autistic children.

And really, if you spend enough time wading through the science, Dr. Parker’s idea — an ecosystem restoration project, essentially — not only fails to seem outrageous, but also seems inevitable.

Since time immemorial, a very specific community of organisms — microbes, parasites, some viruses — has aggregated to form the human superorganism. Mounds of evidence suggest that our immune system anticipates these inputs and that, when they go missing, the organism comes unhinged.

Future doctors will need to correct the postmodern tendency toward immune dysregulation. Evolution has provided us with a road map: the original accretion pattern of the superorganism. Preventive medicine will need, by strange necessity, to emulate the patterns from deep in our past.

Moises Velasquez-Manoff is the author of “An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases.”

Autism – What Is It?

Autism is a pretty popular word around the world these days and I had begun to assume that everyone knows about autism and there isn’t any real need to explain it to people anymore.  I mean, come on, the media talks about it all the time.  You can find books about it; magazine articles are written about it; you can hear stories about autism on 20/20; etc., etc.  However, assumptions aren’t always reality so I thought that since it is still April and Autism Awareness month, I’d take the opportunity to do some posts on Autism and how it has effected our family, specifically our son Ryan.

Here is a definition of autism per Mayo Clinic:

Autism is one of a group of serious developmental problems called autism
spectrum disorders (ASD) that appear in early childhood — usually before age 3.
Though symptoms and severity vary, all autism disorders affect a child’s ability
to communicate and interact with others.

The Autism Research Institute describes autism as a severe developmental disorder that begins at birth or within the first two-and-a-half years of life. Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of typical children. Less severe cases may be diagnosed with Pervasive Developmental Disorder (PDD) or with Asperger’s Syndrome (these children typically have normal speech, but they have many “autistic” social and behavioral problems).

And the Autism Society describes autism this way.

Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.

All these definitions basically say the same thing – autism is a developmental disability that will typically appear sometimes during the fist 3 years of life.  We first saw the signs of autism in our son Ryan around 18 months of age.

Children with autism appear to be perfectly normal.  I must admit that an ongoing joke around our house has been to question what “normal” actually looks like.  Still, the fact remains that Ryan did begin his life with normal development and what was considered to be “normal” development ceased to exist around 18 months of age.  Still, Ryan has always looked like a “normal” child which was cause for many stares and looks of disgust as he displayed behaviors that weren’t “normal” to others.

Symptoms and severity may vary.  Autism is a spectrum disorder – This was cause for incorrect evaluations when Ryan was very young.  He’s 30 years old now and 28 years ago doctors didn’t necessarily understand autism.  We had three different evaluations done on him and all three said the same thing, “mentally retarded with autistic-like behaviors.”  The main reason for the incorrect diagnosis was the fact that Ryan enjoyed affection and wasn’t really bothered by change (although as he got older, change became more and more difficult for him).  A child who pulled away from hugs and hated it when mom or dad moved the furniture around in a room was more easily diagnosed with autism in the 1980’s.  The doctor’s failed to understand that autism is a spectrum disorder and put emphasis on certain aspects of the symptoms they felt were most characteristic of autism.

The problem with an incorrect diagnosis on evaluations is that the child won’t necessarily receive appropriate services, especially in education.  This was a huge challenge for us and at one point in our lives we actually packed up and moved to a state that we knew would provide him with appropriate services and place him in a classroom that would address the autism part of the diagnosis.

Finally, at the age of six, Ryan was given a correct diagnosis of autism.  However, it took 4 years and several doctors before we found one that actually knew what autism was.  Things have changed a log in the last 28 years, but that is another post, for another time.

Please Let Me Introduce

Ryan.

He is 30 years old.

He likes to laugh (although these photos don’t show that).

He enjoys food (that may be an understatement).

He likes to swing and jump on trampolines.

He loves music.

He loves his laser kaleidoscope.

He is fascinated by wind mills.

He likes nice tight hugs.

He enjoys a good nap.

Ryan is my son.

He is a brother.

He is a grandson.

He is a cousin.

He has autism.

Autism does not define Ryan, it is simply a part of who he is.