Friday, July 25, 2008

Seeking the Best Options

As we near fall and the beginning of another school year I am contemplating the best schooling options for our children. We've settled on the plan for the 2008-2009 school year, but I am looking toward the future with questions. Bella & Luke will return to GMG - a small district northeast of Marshalltown they have been attending for the past 4 years. And we will continue to home school Seth along with his in-home ABA therapy and private speech and occupational therapy. These are the best options available for our kiddos here in Marshalltown. But at times I am frustrated by the lack of options, especially for Seth. The closest autism specific school is over an hour away and as I talk with parents around the state, most are dissatisfied with the programming their children with autism are receiving from their respective public school systems and yet really don't feel they have any other options. Unfortunately this is the nature of the beast when you live in a largely rural state.

Mike & I have been talking about our plans for the future in regards to schooling options, particularly for Seth. While we are very invested in the community we live in, Mike loves his job, we love our church and friends here; moving may be a necessity to provide Seth with a better educational placement. I would love to think that I can home school him long term, but in all honesty I don't know that this is the best option for him, me, or our family at large. As he has grown and started exhibiting problem behaviors, working with him throughout the day has begun to often bring me to the point of exhaustion by dinner time, leaving me with very little physical or emotional energy to give to my other children.

In addition to this contemplation over the past few week I was recently outraged by comments made by a national radio host. Last week Michael Savage made some completely ignorant comments on his program about autism. He stated his belief that the rise in autism is not a true increase, but instead basically a parenting issue - parents not disciplining their kids or teaching them how to act appropriately. He spewed a slew of nasty names to describe children with autism and claimed parents are seeking the label just to get government assistance. This type of completely idiotic thinking exhibits Savage's complete and utter lack of knowledge or compassion about autism. Having had 2 children before my child affected by autism who do obey and behave in general, his line reasoning falls apart in our particular situation. I have no idea what would prompt someone to spew such hurtful garbage at other human beings with so little understanding of the vast struggles that autism presents to children and families.

With all that many in the autism community have been doing to educate people about autism and bring greater awareness and acceptance to this illness, it is a crying shame to see someone take us in the wrong direction with such ignorant, hurtful ideas transmitted across national radio waves. Many are calling for Savage's firing over these statements and many stations are taking action to remove him from their programming. I applaud these stations! These statements do nothing to help make the way for better treatment and education for children with autism which is so greatly needed. Families in our nation affected by autism need the support and compassion of those around us, not judgement. So as I'm contemplating schooling options or the lack thereof for my son, this idiot is spewing his hateful and harmful thoughts to our entire nation, potentially affecting the thinking of individuals who will vote on funding issues for education who might think that if autism is just due to bad parenting we certainly should not commit more tax dollars to education to provide for the needs of these children. This is a dangerous line of thinking to plant in people's minds when these children have very real needs - often physical and neurological needs that take a great deal of time, attention, and money to address.

If you are a Savage listener I would challenge you to let him know your thoughts on his recent statements and if your not - make a point of turning him off if you come across his program. I wasn't a listener and now will make sure to never become one. Then continue to do your part to educate those in your world about the disease of autism and the real challenges that children and families face. Autism has been the single greatest challenge to my parenting, but I'd like to believe it has made me a better parent than I'd ever have been without it.

Wednesday, July 9, 2008

I'm back!

I can't believe it's been almost a month and a half since I last posted. The month of June was extraordinarily busy. It began with a big weekend of dance recitals and a visit from Grandma & Grandpa. Isabella did a wonderful job at the recitals and Luke decided after attending for the first time that maybe he'd like to take dance also. We're thinking soccer would be a better way to burn off some energy for him, but we'll see.

Following the recital weekend I was excited to watch for news on the "Green our Vaccines" rally which was held on June 4th in DC. Over 8000 people attended the rally and march. Numerous people spoke at the rally which was held on the capitol lawn including Jenny McCarthy, Jim Carrey, Boyd Haley (my favorite chemist - professor at University of Kentucky), Carolyn Mahoney (rep. from NY who has sponsored various legislation in our favor), and many more. It was a touching event that I wish I could have attended. I'm just so thankful that they word is getting out there about the risks of vaccines and the need to slow down the schedule and clean out the toxins. If you'd like to learn more about the "Green our Vaccines" rally, you can watch video at http://www.autismone.org/radio/video/greenrally.cfm or read about the event at http://www.talkaboutcuringautism.org/index.htm (scroll down about halfway down this webpage to find info about the event).

Mid-month we took a trip to Nebraska to visit family and then left the kiddos with my parents to get away as a couple to a conference in Las Vegas. Mike had a big AV conference there and I tagged along. It was great to get away and seeing Las Vegas for the first time was quite impressive. We got home from this trip and had 2 days to get ready for Vacation Bible School. We had about 100 children attend through the week and had a great, but exhausting time. Then the day after VBS wrapped up we left for a week-long trip to Tennessee. We met up with old college friends for an annual reunion near the home of one of the families. On the way home from Tennessee we stopped to visit friends in northern Indiana and had a wonderful visit including the chance to take the train into downtown Chicago and experience the big city with our big kids (Seth stayed back at our friends house with my girlfriend who generously offered to stay back with him).

We survived the month. Overall it was a good month, but much busier than I'd really like to be. But through all the craziness I was blessed to see God's hand in various situations. I was so thankful for the opportunity to get away with my husband and relieved that Seth did well staying with Nana & Papa. Even though it was taxing on the leaders of VBS to have such a large turn out at VBS, it was also a huge blessing to see so many kids so excited to learn about Jesus. At least 8 children made first time decisions to ask Jesus into their hearts. On our trip to Tennesse we were blessed time and again with affirming and encouraging words from our old friends and the staff at the camp we stayed at. Finally on our stop in Indiana, we were touched by our friends willingness to stay back with Seth so the rest of our family could take in the city.

This week we have an autism awareness booth at our county fair and hope that word of our support group will spread through this event along with educating more people about autism. As I write this I'm reflecting on a day where autism had a really ugly impact on my son. He had a really rough day yesterday and was insistent on getting what he wanted at all costs, including inflicting harm on himself, others and our home. 'No' and 'wait' are concepts he seems unable to accept even though we've worked for years on helping him to understand and deal with these words. Days like yesterday are the days that make me really angry at this disorder for what it's doing to my son as he went to bed with a fresh bruise on his forehead from banging his head and I have a fresh bruise brewing on my arm from him banging his head on me. The impact of this disorder on children and their families is huge. My prayer is that progress will be made soon in discovering the cause and helpful therapies for autism.

Sunday, June 1, 2008

"Green our Vaccines" Rally Contemplations

Exciting happenings continue in the world of autism/vaccine awareness. Next Wednesday there will be rally in Washington D.C. led by Jenny McCarthy and Jim Carrey with the purpose of bringing light to issues of vaccine safety. Jenny McCarthy has been outspoken about her son's descent into autism after vaccination and her serious concerns about the aggressive vaccine schedule in our nation. Jenny & I are probably as unlikely allies as you could imagine, but I am inspired by her tenacity and grateful she is using the national platform she has to speak to this issue. The purpose of this event is to encourage national health agencies to remove toxins from our children's vaccines and reassess the mandatory vaccine schedule, as our children are receiving TOO MANY, TOO SOON. For more info about the rally you can visit http://www.tacanow.org/.

Some in the autism community are concerned that this is not far enough, that supporting vaccination in any way will not bring about the change that is needed. Major changes are definitely needed in the area of the vaccinations in our country. I don't know exactly what the best route to those changes is, but I am excited about the national media attention this issue is receiving and the awareness that is rising in our country about vaccine safety or the lack thereof.

Many friends of mine are asking me more and more questions about vaccines They ask what vaccines are truly necessary - not many in my opinion. They ask what the negative health consequences of vaccines could be beyond autism - asthma, cancer, diabetes, arthritis, and much more. They ask what type of vaccination schedule I would use if I had another child - in all honesty I probably will not vaccinate any of my children further (those I have now, or those God may bless us with in the future). But ultimately, as I told a friend tonight over dinner, no matter what direction you decide to go, God is ultimately in control. A dear friend reminds me of this when I get a little too fired up about vaccination issues. Life is risky. Vaccinating definitely has it's risks, but not vaccinating also has it's risks. Whatever we decide to do, we have to trust that God is in control, even if our choices lead to negative health consequences in our families lives. Now that's a tough one.

If I take that line of thinking to the end I have to accept that God knew completely what was going to happen and allowed Seth to get autism. I have to accept that this is part of God's plan for my life and for Seth's. That's really hard. I can see the ways Mike & I have grown over the past 6 years. I can see value in the people I've met along the way; inspiring people, loving people, helpful people, hurting people. But the hard thing to accept is the pain and frustration that my precious boy experiences each day as a result of autism. I would give anything to take that away for him - to give him a "normal" life with "normal" struggles that don't include frustration levels that lead him to bang his head many, many times throughout each day, grind his teeth down to nubs, and lash out physically at those around him. This is the ugly side of autism that I wish I could spare my boy from. It is in these struggles that I ask God why He allowed this, but ultimately realize I will never fully understand this side of heaven.

So I continue in my mission to help my baby through healing the damage that has been done to his little body through vaccines, allergies, environmental toxins and more. And I continue to speak out to anyone who is willing to listen about the dangers of vaccines and other environmental toxins because I would not wish the pain of autism upon my worst enemy. But most of all I pray for God's hand of healing on behalf of my boy. As in all trials in life, we need a movement of God's hand more than anything else.

Thursday, May 22, 2008

The Journey of Marriage

Mike & I celebrated our 14th anniversary yesterday. Mike grilled steaks and made rice and roasted asparagus for us for dinner as I didn't get back from Ames until 6:30 - another autism therapy appointment - a constant in our lives. I was very impressed with this "gourmet" meal - and Mike was impressed with himself that he carried it off. Mike also was sweet to stop and pick up a pot of daisies at the store on the way home. The past 14 years have a certainly been much different than what we'd expected and yet here we are, still together, happy most days, and committed to staying together over the long-term - no matter what new challenge may present itself.

Early in our marriage we started saying something that has become a running joke - "we may grow old together old and miserable, but divorce is not an option". I think this has been a good mindset for us, albeit a little glum. We're hoping for old, happy and lovin' life - but we'll see. Regardless, we are committed to doing life together. In a culture where the divorce rate is at or above 50% (80% for families with kiddos with disabilities), I praise God for carrying us through. It is by His grace that we can continue to love each other and most days enjoy our life together.

There are definitely days when we drive each other crazy - me driving him crazy with my cooking, putting onions and garlic in way too many foods for his taste, and him driving me crazy by generally eating like a 3rd grader (Mike willing admits this). He's an engineer, and I'm a musician. We approach life with very different perspectives and yet I see how God has placed us together to bring balance to both of our lives and to make a great team to raise our 3 beautiful children.

Aside for the tension that is inevitable when people share their lives, I feel so blessed to be sharing my life with a wonderful Christian man who loves me and our kids and shows that love through his incredible servant-leadership in our home. He is a tremendous blessing in my life and is always ready to do what needs to be done. A couple years ago while I was struggling with severe back pain due to several bulging discs, he told me I was no longer allowed to do the laundry as this was something that always did my back in. And he's been the main laundry man in our house ever since. This is just one example of the servant heart he has.

Our marriage is far from perfect, but by the grace of God we've found a way to do life together in the midst of life's challenges with joy, laughter, and endurance. Endurance is probably #1 characteristic needed in any marriage and in life in general to walk the road God places before us and do so with the joy of the Lord. I continue to pray that God, by His grace will give us the perseverance and endurance to continue on, to run the race set before us and finish strong. I pray that for each of you also! God Bless!

Thursday, May 15, 2008

Vaccine/Autism Link Coming to Light

2008 has been an exciting year as I've watched more and more information come to light about the link between autism and vaccines. Since starting our journey with autism I have done extensive research in this area and have a strong belief that vaccines played a major role in the development of Seth's autism and many, many other children. The rise in the autism epidemic from a rare disorder affecting 1 in 10,000 20 years ago to a common disorder affecting at least 1 in 150 today directly coincides with the marked increase in the number of vaccines given to the children of our nation. Seth received 36 vaccines by the age of 15 months. I know as an 150+ pound adult I would not want to receive 36 vaccines in 15 months. I have little doubt that if I were to undertake such treatment my health would be adversely affected. Can you imagine what that many vaccines could do to a 8-20 pound baby whose immune system is not strong enough to deal with that many insults?

Earlier this year it came to light that the national vaccine injury court settled a case in which they conceded that a young girl from Georgia named Hannah Poling was harmed by receiving 9 vaccines on 1 day at the age of 18 months; harm which later resulted in an autism diagnosis. The media tried to portray this case as an atypical case of autism which was brought on by a mitochondrial disorder. But scientists are finding that perhaps as many as 50% of kiddos with autism have some type of mitochondrial disorder. Our son is one of those 50% who struggles with mitochondrial/cellular energy issues. Jon Poling, the father in this case is a Johns Hopkins trained neurologist who has spoken out to clarify misinformation that the government and media have shared. He shared his views on this issue in his letter to the New York Times editor http://www.nytimes.com/2008/04/05/opinion/l05autism.html?_r=1&ex=1365134400&en=de5eb563f987fdb1&ei=5088&partner=rssnyt&emc=rss&oref=slogin

Hannah Poling is not a unique individual in the autism community. Many children have mitochondrial susceptibilities that mean that the number and frequency of vaccines in our current schedule will case harm. There are almost 5000 other cases before the vaccine court claiming that vaccines caused autism. Just this week the court began another series of test cases. These cases claim several different causation routes related to autism, including harm caused by thimerosal (mercury based preservative) and live virus insult (from measles component of MMR).

Do I believe that vaccines are the only environemental trigger causing autism? No! I believe that there are many toxins in our environment, including mercury emissions from coal fired power plants (we lived less than a mile from such a plant while I was pregnant with Seth and during his first 9 months of live), pesticides in our food supply, preservatives in commonly eaten packaged foods, food dyes, fire retardants in mattresses and pajamas for children, and the list goes on and on. But I do believe that vaccines are the primary and most heinous culprit causing this epidemic. The other toxins I mentioned are around us, in our environment and our bodies are able to filter some of them out while vaccines are injected directly into our little one's bodies with little hope of the body being able to combat the toxins and immunological insult.

Just this week a very well-known, mainstream doctor spoke out on concerns she has about the safety of our vaccine schedule. Bernadine Healy, former director of the NIH, spoke with CBS news and shared her growing concern about the possible link between vaccines and autism. http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml?source=search_story I applaud Dr. Healy for having the courage to speak truth when so many in the medical community are clinging to outdated, flawed studies that claim there is no link. We have yet to compare vaccinated vs. unvaccinated children to see what the difference in the rate of autism is - does this not seem like a very logical means of ruling out a link if there really is none? But the government has refused to do this study, perhaps because they already know what the results will be and don't want to be held responsible for the way in which they have damaged an entire generation of children in the name of "good medicine".

Other studies that mainstream docs cling to as proof that there is not a link are fatally flawed, if not purposefully altered to support the conclusion they want to believe. For more info on these studies and the major problems with them check out http://safeminds.org/research/commentary.html. There you will find links to numerous papers that speak to the issues with these studies. The Denmark study is my favorite, since the pediatric neurologist at the Mayo Clinic who diagnosed our son told us about this study when Seth was first diagnosed, claiming it was definitive proof that there is no link. Ha!! This study is a mess and provides me no assurance that there is no link between vaccines/thimerosal and autism. At a follow-up visit with the doc I gave him a paper written by Boyd Haley, a chemist from the University of Kentucky, that detailed the flaws in this study - I'm sure this paper hit the shredder before he ever read it, but I had to give it a try.

I am hopeful that truth will come to light on this issue and passionate about sharing this information with others. Some question why I spend my time "ranting" about vaccine safety since changes now won't help my son. This is not exactly the case. If the medical community will come to terms with the true causes of autism, they will then be able to help more families treat the real underlying issues that are contributing to autism. Perhaps then I could work with my local pediatrician rather than having to drive 3 hours to a find a doctor who will help me address the medical issues my son struggles with. And ultimately I do not wish this journey upon anyone else and will do anything I can to spare my family and friends the pain that we have had to deal with. I share my concerns especially loudly with friends and family who are pregnant or have a new baby, encouraging them to do some research and come up with their own vaccines schedule that does not include 36 vaccines in 15 months. If I've spared one family from the journey of autism (and I'm fairly certain I have), then all my "ranting" is worth it, even if some people in my life think I'm a bit fanatical.

Monday, May 5, 2008

Lovin' Life

After returning home from my California getaway, I am so thankful for the time away. It was a wonderful time catching up with my friend and enjoying the weather and beauty of southern California. We had a wonderful time sharing about our lives as moms and wives; we visited the San Diego Wild Animal Park and enjoyed a beautiful day at the beach; we cooked good food and shopped at Whole Foods (a favorite store of mine); and we talked at length about healthful living, a passion we share. While I greatly enjoyed the trip, I also enjoyed coming home to see my family and friends. While in California my friend remarked that she was struck with what a full life I lead. I am indeed blessed. I have a wonderful husband and 3 beautiful children. I am involved in a growing body of believers who express genuine love for one another and others. I am honored to be able to use the gifts God has given me to serve this body in a variety of ways and to minister to residents at the Iowa Veteran's Home in my part-time job.

Yesterday morning as I sat in morning worship at our church and last night as I returned to church for a graduation celebration for the high school seniors, I was surprised to realize that I desire to remain in the community God has placed me in long-term. I hope to be able to sit with my kids at these celebrations as they graduate high school with a body of believers that have known my children since they were toddlers. I feel blessed to be doing life with a group of believers who seek to know God with all their hearts and desire to minister to those around them in need with God's love and compassion. I hope that my experience with this body of believers is the norm, but as I talk with family and friends around the country I fear this is more the exception than the rule.

For years I have desired to move to a larger city in a different area of the country. But I guess my trip to beautiful southern California and my joy in returning home made me realize that I do indeed have a full life, a life that I love, in the midst of all the challenges before me. My dad has always got on my case about wanting to move, saying that it's not where you live, but what you make of where you live that matters. On this point, I will have to admit that I'm realizing he was right, as he is on many things that I don't always like to agree with him on. So wherever God has placed you for this season in your life, however long that season may be, seek out other believers to do life with. Look for a body of believers that are genuine in their love for one another and purpose to do your part to show love to others. Invest your life in such a body and you will be blessed beyond measure. And with this love and support in your life you will be surprised at all that God is able to do through you!!