Thursday, November 27, 2008

Glimpses of Hope

I continue to struggle with being consistent with this blogging thing, but I'll make an attempt to get back on the bandwagon. Since my last post their have been glimpses of hope and moments of despair. Since sharing about my need for hope I met another warrior autism mom who has see her child "recover" from the debilitating challenges of autism. It was a great encouragement for me to get to know this mom a bit and meet a "recovered" child. I've read stories and seen online testimonials about "recovered" kids, but had never met one in person. In sharing my excitement about meeting this mom and child with a family member I learned that my aunt was praying specifically that I would have the courage to hope again that Seth could improve. This was a very touching and insightful prayer request for me.

We have started yet more new biomedical treatments with Seth and finally think we are seeing some small changes for the better. We have had comments from family and friends that they think they are seeing changes also. This will be a long journey, but we pray that all that we are pursuing will lead to improvements in Seth's life and consequently ours. Yet in the midst of all this the day to day still has been getting me down a lot lately. I've been feeling a lack of joy in the day to day things that usually bring me joy. I've been routinely at my wits end with my family and often have felt like a failure as a wife and mom.

I wish that I could be a steadier person, one who did not have such ups and downs. Yet recently my best friends told me that from some conversations she's had with other women lately, she thinks we are very balanced, level women. If I'm balanced and level and like to see what a person with a lot of ups and downs is like. I want to stay consistently in a place of peace and trust - knowing and believing from the bottom of my heart that He is working all things for good in my life. But I doubt, I question, I routinely whine and complain that "life is not fair!" Yes Dad - I still at my core think that life should be fair, even though I know for a fact that it is far from fair. And I realize that there are many out there with much bigger problems than mine. Right now a dear friend is battling the final stages of lung cancer - that's not fair!!!

I yearn for Christ's return and His reign upon the earth, when all will be set right and we will live in a state of complete justice. I am so thankful for the hope I have in this reality yet to come. I cannot imagine walking the journey I've been asked to walk or watching other walk difficult journeys without the hope of something far, far better beyond this life. And I'm so thankful that by the grace of God, not anything I've done I have assurance of that blessed eternal life. So I guess I'm learning to cope with what I have before me by focusing on the glories and blessings of the life eternal that I have been promised. I praise the Lord for this hope!!

Thursday, September 4, 2008

In Need of Hope

Once again it's been awhile since I've posted. Honestly the past month or so has been a difficult one. I've been feeling low on hope. The demands of day to day life, the struggles of family and friends, the dark world that surrounds us has simply got me in a funk. Lately I've often thought of the first section of Proverbs 13:12 which says, "Hope deferred makes the heart sick". The rest of this verse says "but desire fulfilled is a tree of life." My life over the past few years seems to be characterized by the first part of this verse much more than the second.

My heart tells me that life as it is, is not as it should be. I have many desires that go unfulfilled and perhaps always will. I recently went through a study of Revelation by Anne Graham Lotz. In this study she focused on the hope we can have in knowing Christ. But much of this hope in my estimation, is hope we have in the future not necessarily hope that we will see in this life. I am so thankful for the hope of heaven I have as a believer in Christ, but often I become weary of holding onto hope.

I don't have a quick, pat answer to raise my spirits in this time. I continue to walk by faith - knowing from past experience that God is still with me, and looking to His word for encouragement. But as I reflect on my reactions to similar periods of time in my past I am encouraged. I feel I have grown over the past 10 years - I continue to walk with God now even when I don't always see His hand. In the past I have become extremely depressed and turned away from God at times like this. Now I feel the prompting to just keep on keeping on, trying to remember that the problems of this world are very temporary in light of eternity.

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!!

Tuesday, April 29, 2008

Getting Away

The month of April is almost over and yet it doesn't feel much like spring here in the Midwest. As I write this it is 6:15 am and it's a chilly 32 degrees. I am so ready for some warmer weather. And I will get it later tomorrow as I travel to San Diego to visit an old college friend. I'm so looking forward to a time to get away and relax with a dear friend while enjoying the southern California sun and beauty. In the midst of our rush, rush culture I find scheduling in times to get away and relax a must. Sometimes all that has to happen to get to such a time is very overwhelming as you try to get things in place for your family to survive while you're gone and cover the your responsibilities; but I've found that this extra stress is worth it for the refreshment I receive when I get away.

Getting out of my day-to-day element often gives me much needed perspective on life. There's a whole big world out there with many amazing opportunities and many unique, talented and needy people. God created an amazing array of beauty in his creation that you can sometimes miss when you get so acclimated to your surroundings in the area that you live that you fail to appreciate the majesty of his creative hand. I love traveling because it reminds me of the awesome power of God in the beauty of his creation.

Getting away also helps me to remember that I'm more than an autism mom. I'm a beloved daughter of the God of all creation; I'm a valued friend who is joyously expected; I'm a discoverer at heart who loves to explore new places and learn new things. Getting out of my daily rut helps me remember all that God has placed in my heart and mind and all the possibilities that are available to me. I'm so excited to have this short respite to rejuvenate and renew.

I encourage you all to seek out your own little respites, even if it's just taking a walk around a park or lake in your area, sitting out on your deck and enjoying the hopefully warmer weather, or turning on your favorite music and singing at the top of your lungs. And by all means if you can manage a trip to a favorite destination to visit a dear friend - make the time, I fully expect it will be worth my time and effort to get there.

Friday, April 18, 2008

It's been a busy couple of weeks full of a dizzying array of activities and troubling revelations. We started our local area autism support group this past weekend with a small but passionate group of parents. We are confident our numbers will grow as word spreads and families become more aware of the support we hope to offer.

One of the passionate parents that did attend is mom to one of the students in the school system that I spoke of in my previous post. I've been talking with this mom a bit and it has been revealed to her that her son was harmed by a para educator in his classroom at school. That in and of itself is bad enough, but the even more disconcerting part of the story is that the school district has tried to cover this up. Had another para that witnessed the altercation not written this family an anonymous letter, this might never have come to light. Fortunately that para had the courage to write this letter and others have had the courage to contact local and state news organizations. So the story is getting coming to light and the school district is feeling the pressure to come clean. What exactly the district will do is yet to be seen. Unfortunately we are not hopeful that they will be completely forthright. Our suspicion is that they will do all they can to cover their proverbial back end.

In the age we live in, in which all school and therapy staff are required to go through mandatory reporter training this situation is particularly troubling to me. Is this training only to turn parents in when there are questions about abuse? Does this not protect our children in whatever setting they are in? This situation has only added fuel to the fire for me in my feelings toward our local school district and has completely confirmed my decision to homeschool my son with autism.

Aside from autism issues, which seem to consume our lives at times, we have been busy with kiddos, work and ministry. Kiddo 1 & Kiddo 2 are having a great year at school, although Kiddo 2 is getting a bit of spring fever. He's excited that baseball will begin soon. My part-time job as a musician at the Iowa Veteran's Home is a nice outlet for me to bless others with the gift of music that God has given me. Hubby's job has been pretty calm lately, with no travel since January - yippee! Hubby & I head up our worship ministry at our church. We have been excited to have a good number of new musicians join our body of believers lately. We are looking forward to incorporating them into our worship teams and getting to know each of them better.

Tuesday, April 8, 2008

Educational Overhaul Needed

It was a troubling weekend for me. When I started this blog last week I'd hoped to keep it balanced and not completely go toward writing only about autism. But with the information I have learned over this past weekend, I feel compelled to write about troubling things that are taking place in my local public schools. The state of the public education system in the US is in dire need of a complete overhaul. In general it seems that most schools are trying to continue with the teaching strategies and classroom structure of the 1960's and 70's. This antiquated approach is not effective in teaching this generation of children. There are still many wonderful teachers working in broken systems who are trying to make a positive difference in people's lives and there are a few schools I hear of (one that our older children attend) that are doing a great job of providing a good education in a safe and caring environment; but there is a great need for a complete reworking of the way we teach our children.

I am hearing stories in my own community about very troubling things going on in the school systems, especially with special needs students. I have several friends who are special ed teachers and aides who are completely outraged with the way in which special education is being run in our community. Teachers and aides are not receiving adequate training to provide for the very specific, very challenging needs of the children in their care. I realize that the system is overrun in general with the rising population of children with special needs, but we must adjust and do our very best to meet the needs of these most vulnerable members of our society. Instead I hear stories of students being left in "safety rooms" (basically a closet) for hours on end because teachers are not equipped and are not being supported by school psychologists to develop behavior plans to circumvent the trouble behaviors children are engaging in. I hear other stories of students being harmed by their aides because the aide does not have adequate training and a good understanding of the unique challenges of this student. I hear stories of special needs students being in the care of an aide for the first 6 months of school without a supervising, certified special ed teacher in their room at all. These situations should not be taking place.

In the area of autism education, our local school district is stuck in the dark ages and is completely discounting new therapies that are being used across our nation to effectively treat autism. A school psychologist in our district recently told a parent of a newly diagnosed child that ABA therapy is Nazi therapy. ABA therapy, the widely accepted therapy, known to be very effective in helping children with autism learn and overcome many of their challenges. The therapy which has been widely researched and which is commonly utilized by school districts all over our country. The following website will take you to a 29-page list of studies proving that ABA is effective. http://rsaffran.tripod.com/IBIrefs.html ABA has generally become accepted as the most common best practice treatment for autism. Our son was diagnosed at the Mayo Clinic and their primary recommendation for treatment was to pursue ABA and yet our local educators who are instructing parents in the best treatments for autism completely discount this therapy. This is educational malpractice!

And don't even get me started on our school districts views on biomedical treatments. The autism resource specialist in our district strongly discouraged me from trying the gfcf (gluten-free, casein-free) diet with our son, claiming that it was expensive, non-nutritious and ineffective. I'm so glad I didn't listen to her. My son would still not be sleeping through the night and his gut would be absolutely destroyed. Occasional infractions on the diet send him into a crazed mania, often make him throw up, and greatly disrupt his sleep. On the diet he is calmer, sleeps through the night consistently and is generally a happy boy (before the diet he had 3 states-sleeping, eating or screaming). I'm sure she continues to give the same advice to new parents in our district, who trust that she is the expert and discount biomedical treatments in general; treatments that could significantly help their children with autism.

I praise the Lord that there are other options available to us. We currently homeschool our son with autism and receive ABA therapy from a state agency that serves individuals with autism. Our son has 4 wonderful, caring, intelligent therapists who work with him in our home, effectively teaching him new skills on a daily basis through the use of ABA. They are so far from gestapo therapists. I work on academic skills of reading and math with Seth, which he excels in. And he receives speech and occupation therapy from caring, committed private therapists. I shiver to think what kind of shape he would be in if he were in our local public school system, devoid of the effective teaching strategies of ABA; bombarded by sensory input in classrooms with predominantly florescent lighting; and most likely eating food off his diet as the staff would discount the effective of his diet because of training from their autism resource specialist.

My husband and feel compelled to speak out on these issues and provide parents in our community updated information about autism treatments. We are excited to be starting an autism support group and hope that group will be a change agent for the inadequate special ed programs available in our public school system. But change is difficult, people like to do what they have always done, even if what they have always done does little to help children with autism. I question whether I have the resolve to be a crusader in this area, yet it would feel wrong to sit back and do nothing. Please pray with us about what our involvement should be and pray for change that will benefit the many children in our school system with special needs.

Friday, April 4, 2008

Joining the Blogging World

I've been thinking of starting a blog for awhile and here it is. My purpose in starting this blog is share the ramlbings of my heart and also to give regular updates on our family and specifically on Seth's progress as he fights to overcome autism. I chose the name of my blog to reflect my ongoing passion to seek out truth in many areas of my life. I've been challenged lately through a Bible study I just completed, When Godly People Do Ungodly Things by Beth Moore, to examine the wallpaper of my mind and heart and seek to rewallpaper with the truth of God's Word. This is not a new concept for me, but one that I know I'll be pressing on to accomplish for the rest of my life.

I am on a mission to be grounded in the truth of God's word. I am seeking to understand the circumstances of my life and light of this Truth. In the midst of life's challenges I must hold to the truth of God's love for me and my family. I am on a mission to sow truth into my children's lives by living out my faith very openly and honestly before them. I am on a mission to seek truth in my ministry commitments as my husband and I lead the worship ministry at our church, and as I reach out to other moms in our community through a general moms group and an autism support group.

I am on a mission to bring truth to light about autism and it's causes and effective treatments. God has also given my many opportunities in the past 6+ months to speak out on the issues of autism. Just in the past couple weeks I've had 2 letters "pulished" in local media outlets that speak to my concerns about vaccines and their role in the rise of autism. You will find these letters posted here on my blog. I am a "Mama on a mission for truth" in this specific area with a deep passion to see truth come to light. My heart is to protect children from the debilitating disease of autism and to find effective treatments for the children who are already suffering autism's devastating affects.

April is Autism Awareness Month. Many media outlets are talking about autism. On Wednesday, April 2nd CNN observed World Autism Day by airing segements about autism throughout the day. One of the best programs I saw was Larry King Live. Larry had Jenny McCarthy on, an actress and autism mom, along with David Kirby, author of "Evidence of Harm" and much-loved journalist in the autism community, along with several pediatricians with varying views on the autism-vaccine link. I would encourage you all to log on to cnn.com and view this program while it is still available. A great activity to commit to for the month of April for those of you who are Christians is the Turning the Tide Prayer Thrust put out by Children of Destiny ministries http://childrenofdestiny.org/pdf/Turning_the_Tide_2008.pdf. I believe that our God is a God of justice who desires to protect his children and will respond to our prayers. Please join my family as we pray through this autism awareness month together.

I welcome you to my blog and hope you will be blessed by the ramblings of my heart as I share them here in the weeks and months to come. We thank you from the bottom of hearts for your prayers for Seth and our family and hope this will be a tool to help keep you informed.