Tuesday, April 2, 2013

World Autism Awareness Day Post - "I'm not about to give up. I'm just not sure I can go on."

Today is the 6th annual World Autism Awareness Day and our 9th year with autism as a central part of our family.  Since Seth's diagnosis 9 years ago we have been on a eventful journey to help Seth grow and learn.  We have pursued numerous therapies including behavioral, educational, vitamin/mineral, detoxification, hyperbaric oxygen, equine, and music therapy to name only a few.  We have seen Seth grow not by leaps and bounds by in a slow and steady manner.  We have learned to rejoice in the small triumphs and yet are greatly concerned about Seth's future.
As Seth has grown bigger the autism rates have also grown.  When Seth was born:
  • In 2001 1 in 250 children had autism. 
  • In 2004 the number increased in 1 in 166.
  • In 2007 - 1 in 150
  • In 2009 - 1 in 110
  • In 2012 - 1 in 88   
  • In 2013 - 1 in 50
And 2001 was not the beginning of the increase. 
  • In 1976 - 1 in 5000
  • In 1985 - 1 in 2500
  • In 1995 - 1 in 500
These numbers are startling.  Some are trying to explain this increase through better diagnosis, but with the release of the latest numbers last month the CDC said, "Even allowing for more frequent diagnoses, a true increase in the number of people with an ASD cannot be ruled out."  I believe there has been an astronomical increase in the number of children with autism; the number of families forever changed by this diagnosis.  It is time to truly consider the environmental factors that are causing this astronomical rise since genetic disorders cannot increase at this type of a rapid rate.

Additionally it is key that we support individuals with autism and their families.  Interventions that help to improve the symptoms of autism are expensive and in short supply.  Waiting lists are often long both for these services and for funding to help cover therapy costs that routinely cost families more than $20,000 per year.  We have been blessed to have state funding that helps to offset some of these costs along with generous support from family and friends to help with costs that are not covered.  But I know many families who do not have these resources and are desparate to get their children help.  My heart breaks as I talk with these families.

The toll that autism takes on a family is difficult to express.  We try to find the gifts in the everday victories and yet we watch Seth fall farther and farther behind his peers each year.  Attending church and his older siblings concerts and sporting events is very challenging for Seth which has meant making accomodations that have affected our whole family.  Our older kids accept that often they only have 1 parent at their events and yet I recognize the loss that is for them. 

On world autism awareness day, I don't believe that it's a coincidence that tonight at my book club we will be discussing "Dancing with Max" by Emily Colson.  A beautiful story of the joys and challenges of raising a child a with autism that I would highly recommend.  I will close this post with an excerpt from the book that beautifully articulates this journey.  These could be my words; these have been my thoughts.

      "It would be easier if I had a guarantee that everything would get better, if I knew the struggle might even end at some point.  It could end like trials do for other people, everyone gathering around celebrarting, throwing a party with hors d'oeuvres and cake.  Everyone noticing.  But that wouldn't be our story.  Tomorrow I would have to find the courage, the endurance, to breathe deeply and simply start again, even if no one noticed.
       Most of the time we're great.  I love Max desperately, as if my body were being turned inside out.  It's an unquenchable love that takes up most of my existence.  Max is not a burden; he is my great gift.  I'm not about to give up.  I'm just not sure I can keep going."

Saturday, September 3, 2011

Off to a Great Start!!

The school year is off to a great start! All four kids are settling into their classes and doing well. We are so thankful for all the answered prayers we have seen. God has confirmed our decision to bring the kids into Marshalltown for school over and over again. Bella has a wonderful group of teachers, three of whom we know are believers. She is finding her way around the middle school and is really enjoying choir and band. We figured out that her choir teacher took voice lessons from me when she was Bella's age, which makes me feel quite old.

Luke is settling in at Lenihan. He has 3 good friends from church in his am classroom which makes him feel much more comfortable in a new setting. Yesterday they fit him with a new fm system which amplifies his teachers directly into his CI so he doesn't miss any instruction, and we were excited to see his am teacher at church on Sunday.

Seth continues to be excited to go to school each morning. His teacher and para are both very caring and excited to see him each day. His classroom teacher is working with other specialists to outfit his classroom with sensory supports that will help him to cope with the stressors of school including a mini tramp, bean bags and a weighted blanket. He's showing off his strong math and writing skills and loves the huge white board that his teacher allows him to draw his various street maps on each day. He's had some rough afternoons when he really doesn't want to do more therapy after school, but he's adjusting.

All of these positives are answered prayer!! It's amazing to see everything fall into place so beautifully. But then I realize what a lack of faith that feeling is. We have consistently lifted this transition to the Lord, so why am I surprised when things go well? God is faithful to listen to our prayers and I constantly have to remind myself that He loves my kids way more than I do. I am trying to learning to praise the Lord in the most difficult of circumstances so I can certainly give Him praise when things go well. Praise the Lord! Praise the Lord! Praise the Lord!

"Taste and see that the Lord is good. Oh the joys of those who trust in him!" Psalm 34:8

Thursday, August 18, 2011

Big Changes Brewing

We are finishing up the last week of summer at the Pedersen house. It's been a fun summer with lots of family time and several fun trips. We spent a great weekend in Chicago and even did downtown as a family - something I could not have imagined a few years ago. Seth was a trooper even in 100 degree heat. We had a great time at our annual summer reunion with friends which was close to home this year. The kids are all growing up so quickly and have developed good friendships with one another over the years, even if they only see each other once a year. Finally we joined my parents, grandma, siblings and their families in Branson to celebrate my parents' 40th anniversary. We had a great time hanging out with family, enjoying the beautiful views from the deck overlooking Table Rock Lake, exploring Branson and spending time on my brother Jon's boat.

It has been a summer of transition with a new little person in our home. Our new placement arrived just as the summer began and we have settled into a new normal as a family of 6 for the time being. It is an interesting way to live with the possibility that family life can dramatically change on any given day, but we believe this is what God has called us to for this time and we are thankful to be able to bless children in need with love and a positive home environment (most of the time). There are certainly rough days when I feel completely ill-equipped to handle the challenges before me and I wonder why in the world God has asked us to do this, but we continue putting one foot in front of the other and make it through even those tough days.

The kids are getting excited for the start of school on Tuesday. While summer is fun I think we're all ready to get back in more of a regular routine. The regular routine is going to look quite different for our family this fall with major changes in school choices. Bella & Luke will be attending Marshalltown Public Schools after 7 years of open enrollment at GMG. We loved our time at GMG and they received a wonderful education in a nurtuing environment there, but we felt it was time to make a change. Seth will be starting public school for the first time and will attend the elementary school just 2 blocks from our home. We are very impressed with his teacher and hope the experience will help him grow and progress even further. We will have kids in 4 different school buildings in town - should be interesting!!

For the first time in 13 years I will have all the kids in school (I chuckle as I write this because we could get a call any day to take a preschooler or an infant). I've considered looking for a more full-time job but we've decided that my availability is still important for our kids. I will continue working part-time at the veteran's home and leading a weekly bible study and a bi-weekly mom's group. I plan to make time to work on my book, excerise more regularly and maybe I'll get a nap in here and there - that sounds really great. I'd love to reconnect with some old friends and help those in need in our church and community. I know one thing that will definitely be on my schedule - prayer for the kids as they enter new educational environments. Prayers that God will guide and direct them, use them as salt and light to their classmates, and that God will enable them to be all He has designed them to be. As I ponder all that I'd like to do with my time I'm certainly not concerned about not having enough to keep me busy, but then that never seems to be a problem in my life. Life will be different, but I'm excited for the changes ahead.

Thursday, April 28, 2011

The Facts of Autism

Autism Awareness Month has been a whirlwind in our house with 2 short trips, many doctors appointments, and preparation for a much needed vacation. My goal at the beginning of the month was to post an autism fact on Facebook daily but life got crazy and it looks like I will end up posting 15. Below are the facts I posted this month and a little about how these facts impact our family personally.

Fact #1 - 1 in 100 children now have autism.
A friend with an adult son with autism shares that she knew no other families in her area who had a child with autism. I know about 15 families personally who live within 100 miles of us who have at least 1 child with autism (2 families with 2 boys on the spectrum)

Fact #2 - A new case of autism is diagnosed every 20 minutes in the U.S.
I meet families with newly diagnosed children about once a month.

Fact #3 - The autism prevalence rate is increasing by 10-17% per year.
This rising rate is simply scary and shows no signs of leveling off.

Fact #4 - More children will be diagnosed with autism this year than with AIDS, cancer, & diabetes combined.
I am in no way trying to marginalize the suffering and pain associated with these other illnesses, just trying to bring awareness to the magnitude of the issue of autism.

Fact #5 - Lifetime care for an individual with autism is estimated at $3.2 million.

The costs associated with caring for individuals with autism are overwhelming at times. There is a constant battle with insurance to get services covered. When insurance simply won't cover the needed treatments families are torn between doing what they feel their child needs and spending money they often don't have - leading to high levels of debt in the autism community.

Fact #6 - Costs of lifelong care for individuals with autism can be reduced by 2/3 with early diagnosis and treatment.

We have been fortunate to live in a state and an area of that state where intensive early educational intervention services have been covered for Seth under the Home and Community Based Waiver Program - many families dont' have this coverage. Each state has different waiver programs which cover varying therapies, but often have 5-10 year waiting lists.

Fact #7 - Autism is a bio-neurological developmental disability that generally appears before the age of 3.

Autism affects not only the brain, but the body as well. Seth's general health is poor which has impacted his brain development. Seth was treated with antibiotics 10 times in the first 12 months of his life for ear & respiratory infections. Right after his 1st birthday he was very ill for several months - all of these infections and antibiotics, along with other environmental insults contributed to his descent into autism betweeen 15 & 18 months of age.

Fact #8 - Autism impacts the normal development of the brain in the areas of social interaction, communication skills, & cognitive function.

Seth struggles to connect with others in a normal way socially. We constantly work on eye contact which has brought improvements in this area, but it is a continuing struggle for Seth. Seth's communication skills are severely impacted by his autism. At 9 he has no verbal language, but does use some sign language and a computer communication device to express himself. But even these communications are limited to expressing his basic desires for food or toys, and identifying objects in his enviroment that we have taught him one item at a time. Incidental learning of language that is so amazing to watch in typically developing children is completely absent in Seth's life - he has to be taught each item individually. Seth's cognitive functioning is quite impressive if you can get past the communication gap to truly understand what Seth does know. Seth is reading and writing and loves math. Seth has a photographic memory, especially of architectural and infastructure objects such as roadways. (Last weekend on our way home from Chicago we stopped at a tollway oasis - which he drew in detail a few miles after we left the oasis.)

Fact #9 - Autism is diagnosed 4 times more often in boys than in girls. 1 in 70 boys now have autism.

At a conference several years ago we heard a biochemist give a great explanation of this statistic. Testoterone has a synergistic toxicity - meaning that when testoterone is present with brain cells and neurotoxins are introduced brains cells die much faster. Whereas estrogen has a protective effect. When estorgen is present - it protects the brain cells from the neurotoxins.

Fact #10 - Many individuals with autism have sensory impairments which lead to difficulty in processing sensory information such as sights and sounds.

Seth's greatest struggles with sensory issues are around the issues of food textures, bright lights and large groups of people.

Fact #11 - Individuals with autism often suffer from numerous physical ailments which may include: allergies, seizures, digestive disorders, persistent viral infections, sensory integration & sleeping disorders.

Seth has struggled with most of these issues. At the age of 2 1/2 he was diagnosed with many food and inhalant allergies. Up to this point we have not dealt with seizures - but 25% of individuals with autism experience seizures for the first time during puberty so we are unfortunately not out of the woods yet. Seth has struggled with persistent viral issues, has sensory issues, and when he is not on his strict gluten free, casein free diet will not sleep through the night.

Fact #12 - Individuals with autism often exhibit dsyfunctional behaviors such as rocking, hand-flapping, toe-walking, and other repetitive behaviors.

Seth started rocking at around 18 months (our first clue that he had autism) and also engages in toe-walking, visual stimming (similar to hand-flapping), and inists on things being the same.

Fact #13 - The economic impact of autism is $60-$90 billion annually in the U.S. alone - these costs are expected to at least double in the next decade.

With the atronomical rising prevalence rate of autism that just does not seem to be slowing down at all, the longterm economic impact is staggering. Not only will many of these individuals require lifelong care, they will be unable to contribute to society financially, and often greatly impact their families ability to earn a living because their care is so consuming that one parent often has to be at home full-time long-term.

Fact #14 - 20 years ago most individuals with autism were institutionalized. Now there are more flexible living arrangements.

The progress we have made in welcoming people with disabilities into our culture has been wonderful. As the prevalence rate has increased and huge numbers of individuals age out of the education system there is going to a HUGE need for bigger and better flexible living programs to assist families in the care of their adult children with autism. These programs are lacking in many areas of the country and funding is in short supply. This will be a growing issue in the autism community in the coming decade.

Fact #15 - There are 24,000 new cases of autism diagnosed in the U.S. each year.

That number brings tears to my eyes as I think of the families that will be devasated and forever changed. The good news is that there is hope and help available through growing numbers of autism organizations founded by parents seeking a better future for those affected by autism. A family member, a neighbor, a church friend, a co-worker could be the one in your life that receives this life-altering news. Be aware, be educated and do your best to be supportive to those around you that are dealing with autism.

Other autism facts:

  • An estimated 1.5 million Americans live with an autism specturm disorder.

  • 1% of the population of children in the U.S. ages 3 -17 have ASD.

  • Autism is not affected by race, region, or socio-economic status.

  • Autism does not affect life expectancy.

  • One characteristic which is quite common in autism is an insistence on sameness.

  • Some individuals with autism engage in self-injurious behaviors such as head-banging, hand-biting, and hitting.About 50% of individuals with autism have little or no verbal language.

  • About 10% of individuals with autism have savant skills.

  • Early intervention can greatly improve the symptoms of autism.

  • ABA is the leading edcuation treatment recommeded by the Surgeon General & American Academy of Pediatrics. ABA (Applied Behavior Analysis) is a system of teaching desired skills in step-by-step systemactic way through the use of positive reinforcement.

  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases.

As you can see from this information autism is a mammoth issue affecting more and more families. The impacts are not fully understood until you experience it firsthand in your own family. There is a great need for advocacy for the needs of individuals with autism which is often difficult for families to undertake when they are stretched to brink financially, physically, emotionally, and spiritually caring for their child or children with autism. We have been blessed to have good services and wonderful support from friends and family and are now in a place to become more involved in advocacy here in Iowa. Mike & I recently were at the capitol for the Iowa Autism Awareness Day on the Hill and made some great connections with legislators and plan to continue the dialogue with our lawmakers about the needs of the autism community. We feel compelled to become involved in this way at this time for other families who are simply unable to speak for themselves. More champions are needed for these families! You don't have to have an affected child to get involved, just a passion to help those who do!

Thursday, April 7, 2011

Costs Great, Blessings Greater

Autism Fact #5 - Lifetime care for an individuals with autism is estimated at $3.2 million.

The fact takes my breath away a bit. Considering the cost of caring for Seth over his lifetime is overwhelming. The cost of raising a typical child is estimated at $250,000, which is not an insignificant chunk of change in itself. For a child with autism these costs escalate to 13 times the costs of raising a typical kid. And these are just the monetary costs we are considering here. There are far greater costs to family life - the breakdown of marriages (80-90% of marriages between couples with a special needs child end in divorce), the emotional and physical strain on caregivers, and the toll caring for a child with a disability has on other siblings in the family.

But along with the costs there are also great blessings. There is the blessing of learning to truly focus on that which is important in this life. The blessing of rejoicing in the small victories each and every day. The blessing of seeing great compassion and love develop in your typical children as they come alongside and care for their affected sibling. The blessing of relishing in simple joys - finding all the "Cars" character vehicles when some were lost and then acting out the entire movie, the excitement of a completed lego creation, the utter joy in roadways and buses, and so much more.

Autism Fact #6 - Costs of lifelong care can be reduced by 2/3 with early diagnosis & treatment.

As we began the journey of autism we found incredible evidence that supported this second fact. Early diagnosis and treatment are key. Seth was diagnosed early and has received intensive early intervention. Even though Seth is still very affected by autism, these interventions have made a dramatic difference in his life. Before we started treatment Seth was completely disengaged from the world around him - he made little or no eye contact, could not sit and attend to any unpreferred task at all, had minimal to non-existant imitation skills, did not play appropriately with toys, and had no imaginative skills.

Through early and intensive intervention Seth has grown dramatically in all of these areas. Seth is now very engaged with those around him. He cares deeply for his family and is always excited to see Bella & Luke come home from school. He is aware when Mike is gone on business trips and is saddened by his absence. He asks specifically about his therapists - wanting to know if Mary or Aerika are coming to see him on a given day. Seth now makes eye contact very regularly - it is still difficult for him, but he knows the importance and value of this skill. Seth can now sit and attend to schoolwork and therapy for up to 30 minutes at a time - an unthinkable length of time when we started therapy. Seth's imitation skills are very strong now - he quickly learns new skills that are based in imitation. Seth plays for appropriately with toys - this is an area that many therapists remark is a strength for him that they do not see very often with other children with autism. Seth has growing imaginative skills - he pretends with kitchen toys, the dollhouse, cars, and his legos. Seth has made great gains through the interventions he has received.

Unfortunately Seth is still very affected with autism and will need continued intensive intervention for years to come. We are blessed to live in a state with waiver services that cover many of these therapies. After getting Seth on a waiver our out of pocket costs have been far lower than other families I know who do not have the same waiver services. My heart goes out to these families and I pray that soon there will be treatments available to all regardless of ability to pay. And yet there are many additional costs not covered by the waiver or insurance - including special and expensive gluten free, casein free foods; medical services with specialists not covered under insurance; therapy materials and products, and more.

We have been blessed by the generosity of God's people through the years. Friends and family have helped us to meet Seth's needs through generous financial gifts and we are soooo grateful for this help. We were recently blessed with a tremendous gift to help cover continuing costs for Seth. We are overwhelmed by God's provision in our lives and are thankful to have a need that gives us an opportunity to see God's hand at work in miraculous ways. We have grown in our faith as we have watched God provide and we have been so moved by the generosity of others. Yes the costs involved in raising a child with autism are great, but I'm beginning to believe that the blessings are even greater!!

Saturday, April 2, 2011

Finding Hope in Autism

April is Autism Awareness Month and Today is World Autism Awareness Day. I am a bit astounded to realize this is the seventh year that we have a observed these events in honor of our precious boy who is gripped by this disorder. Just over seven years ago we visited the Mayo Clinic with Seth and received the diagnosis of autism. Instead of being a great shock at the time in many ways it was a relief. His slow development had been attributed to his hearing loss and vision issues by the professionals who were working with him, but my gut as a mom said there was more. As we faced the diagnosis the intensity of therapy recommended was very shocking as the developmental pediatrician recommended 30-40 hours of intensive intervention weekly.

For 3 or 4 years we hovered around 30 hours a week and continue to be near that number now with his schoolwork, ABA, speech, and occupational therapy each week. Seth has grown and learned at his pace - often a slow pace. As my children and husband will attest, I don't like to do anything at a slow pace and it drives me nearly crazy watching others do things more slowly than I think they should. But I have come to marvel in Seth's small and steady gains and am so thankful for the bigger progress these add up to. Over the past couple weeks several people have remarked to me about how far Seth has come in different areas - about major challenges that he has overcome. These are good remembrances, it's so easy to forgot the road behind. Sometimes I think it's necessary to forgot as not to dwell in the ugly and incredibly difficult days.

Those extremely difficult days are for the most part behind us. We have learned to order our days in such a way to provide Seth the stability he needs so as to be able to live, learn, and laugh. For this I am soooo thankful. Most days my boy is happy apart from a few rough spots, less favored activities that are just necessary parts of life. But he's learning to cope. We are excited to explore new avenues of healing through a great generosity we have received. An appointment made with guarded hope to pursue further healing for our boy in the month ahead. We praise God for the provision of these resources. Resources that allow us an opportunity to hope afresh, remembering though that our true hope is in our faithful Lord who has carried us through. The God of unfailing love who will walk with us whatever the future holds for Seth. This is our greatest hope!!

The words of a song by Natalie Grant so beautifully articulate this hope we possess!!
"Our Hope Endures"

You would think only so much can go wrong, calamity only strikes once

And you would think this one has suffered her share, life will be kinder from here.

But sometimes the sun stays hidden for years,

Sometimes the sky rains night after night,

When will it clear?

But our hope endures, the worst of conditions.

It's more than our optimism. Let the earth quake.

Our hope is unchanged.

How do we comprehend peace within pain, or joy at a good man's wake?

Walk a mile with a woman whose body is torn, with illness but she marches on.

But sometimes the sun stays hidden for years,

Sometimes the sky rains nights after night.

When will it clear?

But our hope endures, the worst of conditions.

It's more than our optimism. Let the earth quake.

Our hope is unchanged.

Emmanuel, God is with us. El Shaddai, all sufficient.

Emmanuel, God is with us. El Shaddai, all sufficient.

Emmanuel, God is with us. El Shaddai, all sufficient.

We never walk alone and this is our hope.

Our hope endures, the worst of conditions. It's more than our optimism.

Let the earth quake. Let the earth quake. Let the earth quake.

Our hope is unchanged!!!

Have a blessed day - knowing there is great hope!!