Monday, December 28, 2009
After 3 days snowed in at my parents we finally made our way over to Mike's parents (15 miles away), with a bit of drift-busting on the 26th and enjoyed Mike's family get-together that evening. Unfortunately our time with Mike's parents was cut short due to illness, as Mike's mom ended up in the hospital with the flu. So we decided to head home a day early. The roads were fairly clear on the way back to Iowa with a few slow spots due to blowing snow which caused some slick spots which led seeing a number of drivers who had very recently gone in the ditch. We were thankful to make it home without joining those drivers in the ditch.
Now we are excited to enjoy the week at home with some game time with friends, a bowl gathering with fellow Nebraska fans and our annual family-friendly New Year's Eve party. It's good to celebrate life with family and friends!! Happy New Year to all!!
Wednesday, December 2, 2009
I'm a bit behind on my Christmas cookie baking. I usually start in the beginning of November and begin stashing cookies in the freezer. I just got started baking cookies over the Thanksgiving weekend. I'm now trying to make up for lost time and get all the cookies baked for the Christmas tins for our friends and neighbors.
It is a joy to take time to get together with others and celebrate the season. Tomorrow night we'll enjoy the kids Christmas concert at school - and yes, their school still calls it a Christmas concert!! Friday night we'll enjoy our annual ministry leader Christmas party - a joyful time to enjoy a delicious meal and wonderful fellowship together with other brothers and sisters in Christ who we serve alongside throughout the year. Next week I look forward to a Christmas coffee with my Bible study girls and the annual holiday party with Mike's work - which is a fun night of good food and celebrating the wins of the company. And we hope to have our small group members for our annual Christmas dinner - the one of the few times a year we use our wedding china.
And once all that takes place, it will be time to pack the van and head to Nebraska to spend a few days with our extended family. The kids are excited to see all their cousins and we all look forward to the fellowship and all the amazing food!! I hope your December will be a month of joyful celebration with family and friends and that you will take time to remember the true reason for the season.
Monday, October 19, 2009
Seth's autism diagnosis was a huge turning point in the life of our family. I can tell you when most events in my life occurred in relation to that fateful day 5 1/2 years ago. I often think of events as either pre or post autism. Having a child with a severe disability changes your entire perspective on parenting and life. But not in all bad ways. Autism has taught me to put things in perspective and has made me realize what is truly important. I don't get bent out of shape if my kids don't get straight A's or if they are not the star athlete on their team. Autism in my life has helped me to value the little things. My dreams for my children are markedly different than they were pre-autism.
There were days when I didn't think we would make it through, when I just wanted to go to sleep and wake up from the nightmare I was living through. But by the grace of God we are walking through this challenge in the life of our family. Bella & Luke have grown into caring, compassionate kids that look out for their little brother in a beautiful way. And Seth is growing and maturing in his own right. He is more engaged with those around him, his reading and math skills are growing quickly, and he is doing much better with going out in the community - I no longer have to keep a tight hold on his hand at all times, he will stay close to me for the most part.
On Saturday we are excited to have Seth's first big birthday party. In previous years we didn't feel he would enjoy a large celebration, but this year we felt his was ready for a grand celebration. The party will have a lego theme - Seth's favorite thing in the world - complete with the Star Wars Lego video game on a big screen and a lego cake. We are excited to celebrate with family and friends. I'm excited to celebrate the life of a little boy who has shown me my own capacity for great love and great perseverance, love in a way I didn't know I could love and the ability to persevere that I didn't know I possessed. Love and perseverance that could only come through the extravagant grace of God.
Saturday, October 10, 2009
Monday, October 5, 2009
Thirty years ago 1 in 10,000 children had autism. I know one of those 1 in 10,000 - he's a bright , wonderful man now who is doing very well as a result of much advocacy on his mother's part. I am blessed to call his mom my friend. She tells me that she was completely alone in seeking treatment and educational intervention for her son - she did not know any other families in her area who had children with autism, because there were no other families in her area who had children with autism. I can't imagine how lonely that must of been, but she is an amazingly strong and resilient lady who blazed a trail for many moms to follow. She has been a tremendous support and encouragement to me and I am so thankful for her friendship.
Loneliness in this struggle is not a problem today. I am good friends with 3 other moms in my community who are facing the same struggles with their children and know of numerous other families who are also walking this journey just in my small Midwestern community. There are 10-15 support groups throughout the state of Iowa alone to help families dealing with autism. Autism is certainly on the rise - it is not just due to better diagnosis or my friend would have met other moms 30 years ago who were going through the same journey.
When will our health officials wake up and realize that something or numerous somethings we are exposing our kids to are contributing to the rise of childhood autism along with the rise in numerous other childhood diseases including asthma, allergies, diabetes and cancer just to name a few? When will the madness stop? Many toxins in our environment are causing these diseases in children and many diseases in adults as well. These toxins bombard us throughout our days including the food we are eating with pesticides, food dyes, preservatives and genetically modified ingredients; the toxic cleaning products we use and breath in our homes; the flame retardants that are sprayed on all mattresses and children pajamas, the array of toxins in our vaccines that we inject into our bodies, the airborne mercury we breathe that is given off by coal-fired power plants; and the list could go on and on.
We must wake up and demand that the leaders of the health agencies in our country who are supposed to protect us start addressing the real problems instead of sticking their heads in the sand and throwing money into areas of research that are archaic and useless. We must start taking personal responsibility for our own families and rid our lives of as many of these toxins as possible. We must educate ourselves on health issues and share the knowledge we have with other so they can lead healthier lives. We must stop poisoning our children! We must stop the madness!!
Sunday, October 4, 2009
We are thankful that we're only moving 40 minutes away and will be able to keep in touch with friends in Marshalltown. Mike and I are looking forward to refamiliarizing ourselves with our old college stomping grounds and taking advantage of all the cultural opportunities, in addition to the better shopping and restaurant options available there. It will be fairly easy to entice friends to come and visit if we just ask to meet them at Great Plains Pizza or Hickory Park for supper - two of our favorite restaurants in all of Iowa!
Bella & Luke are still not happy about the move. Bella informed me last week that she's moving back to Marshalltown when she grows up and she's going to raise her family here. I tried to tell her there's a great big, beautiful world out there and she could live anywhere across the US when she gets older, but she was having none of it. I am confident that once we get moved over and the kids get settled into school, church and extracurricular activities they will begin to like Ames as much as they have liked Marshalltown.
We had a showing on the house on Friday and heard good reports. The couple is a first time buyer and therefore need to make a decision in the next week or two. We're hopeful our house wowed them and we are praying that the first showing will be the only showing and they will give us an offer next week. Through all of this I have seen God's hand at work and I am confident that His timing is best for us, so whether the house sells next week or in 6 weeks I know it will be the right timing for our family.
Wednesday, September 30, 2009
Following that fun weekend we had a busy week getting the house listed with a realtor, looking at more houses in Ames, finally had my appointment at the pain clinic and got relief for my back pain (cortisone injections are my new best friend - back hasn't felt this good in years), and attending the fall conference with the Autism Society of Iowa on Friday. Then came home to help my cousin and hubby move and welcome friends who stayed with us for the weekend. In the midst of all this craziness a new option presented itself for us to possibly stay in Marshalltown. We approached the new Christian school about Seth attending there. This option would entail us providing a one-to-one to go into the school with him.
So over another fun weekend having old friends at our house and taking in the Oktemberfest parade we talked about and prayed about this new possibility and were excited about the option to stay. Yesterday - Tuesday the 29th - seemed like it would be the day we would have a clearer picture of what the future would hold. We were to hear about what the Christian school board thought of Seth attending there and I met with the Ames Public Schools Director of Special Ed to talk about placement options for Seth in Ames.
At the end of the day, things are not a lot clearer. We have two open doors. Ames offered up the autism classroom that we have been hearing good things about and were generally very open and accommodating. The Christian school also said they would be open to having Seth come, starting out with an hour or so a morning and working up to half days. So we have more praying and thinking to do. Ultimately we may leave the decision up to the Lord and see if the house sells or not. For now we continue to live in limbo - which I'm finding rather challenging. I guess this is the time to do what the song from the last post said - I will choose to serve the Lord while I'm waiting.
Friday, September 18, 2009
Saturday, September 12, 2009
And yet it seems that much of life is waiting. I've been challenged lately to put my trust in the Lord as I wait. All this waiting has prompted me consider what the Word has to say about the subject. A quick look in my concordance pointed me to some interesting verses about waiting.
Psalm 27: 13-14 - "I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be, strong, and take heart and wait for the Lord.
Psalm 130: 5-6 - "I wait for the Lord, my soul waits, and in his word I put my hope. My soul waits for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning."
Isaiah 30:18 - "Yet the Lord longs to be gracious to you; he rises to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him."
So I am to be strong and take heart while waiting. Those things don't seem to really go together. I am to wait more than a watchmen waits for the morning. The watchmen are probably pretty certain that the morning will come as it has come every morning of their lives - so we are to wait with great expectancy. Waiting can be an active experience. There is blessing promised by a gracious, compassionate, and just God for those who wait. That's quite a promise.
So I guess maybe waiting isn't such a bad thing. And in the midst of waiting I will continue to serve the Lord with my life - praising Him, loving Him and loving those He's placed in my life. Doesn't sound so bad after all. But don't expect me to start enjoying waiting in traffic anytime soon.
Wednesday, September 2, 2009
Monday Seth and I started some homeschooling lessons and he completely blew me away. He was excited to get to the computer to do his computer-based reading program and I thought I'd see how much he could do independently. We used the same curriculum last year, but I had to help him with operating the mouse to complete the lessons. Monday he did 5 lessons independently with minimal assistance from me when the mouse was being difficult. He is clearly reading and was so proud of himself for being able to do this on his own. It's wonderful to see him growing in independence and knowledge.
Since the big kids started school Seth has shown sadness at their leaving each morning. The first couple mornings he actually put his shoes on when they were getting to ready to leave and I had to console him that he didn't get to go along. Since then he watches them go and stands at the door looking sadly out the window. I take this as another sign that our decision to move over to Ames and get him into a classroom setting is a step he's ready for. His home-based program over the past 5 years has been a great building block for him, but I think at this point he needs more than we can offer at home. We believe that a new setting will challenge him both socially and educationally; a challenge we are seeing he is ready to face.
So we continue with preparations for moving. Our house went on the market, for sale by owner, yesterday. We plan to market it privately for 3 weeks while finishing up house projects and then list with the same realtor we bought the house with 7 years ago. We are praying God brings us a private buyer so we can save the commission money, but put a limit on the amount of time we will market it without a realtor. Tomorrow, Monday and Tuesday Mike plans to work on house projects with help from friends from church - with a crazy fast trip to Nebraska Friday and Saturday for his brother's wedding.
Last night we toured some homes in Ames and found a couple options that would work for our family. We are trying not to get our hopes set on a certain house as we are not sure what will still be on the market once our house sells. But we are encouraged that there will be some good options for us there. My greatest challenge at this point is waiting on the Lord for the right timing - I'm so impatient and just want this all to happen right now. But I desire to trust that God's timing will be perfect.
Sunday, August 23, 2009
We have been investigating schooling options for Seth and have found that Ames schools have good programming and do a good job of working with families and therapy agencies to provide kiddos with a quality education and setting. After homeschooling Seth for the past 2 years we feel it's time to find a good educational setting for Seth. We are happy to see some social skills growth in Seth and believe that a classroom setting will help him to grow further along with taking some pressure off of me for providing his educational needs.
So we're doing all we can to get the house sold. Unfortunately the list of projects is overwhelmingly long. We got a quote on painting the house exterior - but it was quite high - so we're getting other quotes and weighing our options. We've cleared out much of the clutter, replaced some light fixtures, cleaned up around the outside (trimming trees, cleaning the gutters and clearing yard waste), and will be painting some interior rooms and re-landscaping this week.
And if all of that is not exhausting enough I have a house full of people who are none too happy about this move. Luke is doing the best with the change - not a surprise as he's a kiddo that rolls with the punches pretty well. Bella on the other hand has shed many tears and is sooo sad to leave her friends. And as this prospect becomes more real I am also feeling sad about leaving the town we've call home for 13 years. We moved here intending to stay on 3 or 4 years, but have stayed much longer. This is the community we brought all 3 kids home from the hospital as babies in. It's the only home our children have ever known. It's a place we've invested greatly in. We've attended 2 wonderful churches here and have many wonderful friends here.
On the up side, we're not moving that far and hope we will be able to keep in touch. But I know it will be a major change. Our house will change, schools will change, my job will change, our church will change, and even relationships will change. But we believe this is God's provision for Seth and our family and look forward to what He has for us in Ames. We are leaving much but have much to look forward to in Ames. We love the community of Ames, the college town feel, the great restaurants and shopping, the wonderful parks. We will most likely attend the church we attended as newlyweds and still know many people there, so that will make it an easier transition.
So it is a time of many changes and mixed feelings. We ask for your prayers for a quick sale of our house and a smooth transition.
Wednesday, August 5, 2009
In the U.S. there have been 3 "major" flu pandemics throughout the past century - 3 - that's it. The Spanish Flu of 1917-1918, the Asian Flu of 57-58 and the Hong Kong Flu of 68-69. In comparison to the Spanish Flu, the following "pandemics" were very minor. So let's look at the Spanish Flu Pandemic. This "pandemic" occured a looooong time ago when sanitation and food supplies were far inferior to present day, not to mention the advances we have made in health care practices in the past 90 years. Doctors of 1917-18 had very little at their disposal - no antivirals, no respirators. Such a "pandemic" in our time would have much less impact on our society.
Following the small 68-69 "pandemic" which had it's greatest impact on the elderly and immune compromised and with many in our country who still remembered the "Great Plague" of 1918-1919 scientists were working on vaccines to combat these diseases. In 1976 a soldier at Fort Dix died of the "swine" flu and a mass vaccination program was pushed strongly by the medical community. These vaccines were not fully tested (although really most all of our current day vaccines are not fully tested) and caused far greater harm than the flu itself. Private Lewis was the only individual to die of the 1976 "swine" flu, but hundreds or possibly thousands of Americans who received the vaccine died or had negative health consequences as a result of the vaccine.
Any of this sound familiar? Are we incapable of learning anything from history? The CDC & FDA are fast-tracking a "swine" flu vaccine at this very moment. A vaccine that will contain thimerosal, a vaccine-adjunctant that the pharmaceutical industry was asked to remove 10 years ago. An adjunctant that multiple studies have linked to autism - just not the studies the government wants to cite! And among the first on the list to receive this "vitally important vaccine" are pregnant moms and children. A vaccine that will not be tested in the usual manner, and in my opinion the standard testing is pitiful. Adverse vaccine reactions are only followed for 2-4 weeks in the usual studies that our government uses to test vaccines. Multiple vaccines are not given together to test for possible negative interactions, but we give little babies multiple vaccines routinely on 4 or 5 occasions before their 2nd birthdays. Craziness!!
I implore those out there reading this to run as far and as fast from the "swine" flu vaccine as possible. Take some extra vitamins - C, D (get sunlight everyday along with taking a supplement). Buy some echinachea tea - boosts the immune system and is really yummy - my favorite kind has elderberries along with the echinachea. Eat healthy and as much as you can get adequate sleep. These precautions will keep you healthy far better than a series of vaccines that have not been fully tested and could cause multiple side effects!
For a much more detailed explanation of the issues surrounding the "swine" flu vaccine check out the following link from a great organization made up of top notch science minds.
And if you would like to read about the research the government doesn't like to cite that shows a link between autism and mercury (found in thimerosal) check out safeminds website http://www.safeminds.org/.
Tuesday, July 28, 2009
Our kiddos all played together so well - not one fight to break up. We took a stroll to a park near their house and the kids played on an amazing, huge slide pyramid and had a great time. Seth joined right in the fun of climbing the stairs and sliding down the very long tube slides. It did a mama's heart good to see him playing with other kiddos. I was blessed by the way my friend's kids reached out to him and included him as much as he would allow. Luke loved the park and playing with friends so much he was asking me at bedtime prayers when we are going back. Bella and my friend's oldest daughter, just 2 months apart in age but a good 9 inches apart in height (Bella's a peanut) were asking in good girl fashion if they could have a sleepover together. The day was a hit for one and all!!
It's summer days like this that make me realize how blessed I truly am, despite the challenges God has allowed in my life He has given the strength to carry on and find joy and peace in the midst. This dear friend knew me during a time in my life when I was struggling greatly with depression following the boys' births and diagnosis. She asked me how I am now doing and commented that I seem so happy now. I took a moment to remember and reflect on how far God has brought me. There are still hard days and weeks, but by the grace of God I have joy and peace in the midst of the struggles and have experienced a great deal of victory over the depth of depression that I formally struggled with. I realize that trials are a major part of the journey of life for many in this world and have decided (on most days) to embrace the journey and learn all I can about my God and myself. I have come to a place of ultimately desiring to praise God with my life no matter what. I have learned to turn to Him with my fears, frustrations, joys and triumphs and I pray that in all things I can give Him the glory!!
Psalm 115:1 says, "Not to us, O Lord, but to you goes all the glory for your unfailing love and faithfulness." This is the cry of my heart as of late. That God could receive all the glory as I raise my kiddos, love and serve my husband, minister to others at church and work, and all the times in between those. God's unfailing love and faithfulness is worthy of our ongoing worship with the whole of our lives. Not to us, but to You goes all the glory!!
Tuesday, July 21, 2009
Verbal language is still absent and his head banging has been pretty bad lately, but we are hopeful that all the therapies he received in North Carolina and Colorado have made a positive impact in his life. We will be seeing a new doc in Omaha next week. Dr. Moreno took the place of the doc that we had been seeing. I have done some further research on this new doc and am hopeful he will have some fresh ideas to help Seth. We are also on the waiting list for a new doc in Chicago if Dr. Moreno is not the right fit for us. And we are talking about doing more hyperbaric at a clinic in Wisconsin. We don't know when or really how, but do feel it's something we'd like to try again to see if there would be further growth.
Wednesday, July 15, 2009
Luke invited his best friend from school to VBS and we were all excited that T agreed to come. T has been having a great time and plans to come all week. From what I can gather T and his family do not attend church regularly. We are praying that T will understand the message of the gospel and ask Jesus into his heart this week. Bella also has enjoyed bringing a friend who already knows Jesus. It's fun to see the kids discover faith and grow in it.
We are looking forward to the coming weekend as Bella will be baptized on Sunday. She is very excited to take this step in her faith and publicly proclaim her trust in Christ. I am often humbled by her faith and commitment to the Lord and her understanding of spiritual things. While in Nebraska on our last trip my brother was so touched to find her first thing in the morning at the kitchen table having her quiet time. This is a daily choice she is making with very little prompting from me to grow in her faith after I challenged the kids to start the habit of a quiet time last summer. It does a mother's heart good to see such choices being made.
Sunday will be a fun day with our church's annual Johnson Farm Sunday - worship outdoors, baptisms, and a picnic lunch together followed by an afternoon of outdoor activities. It's always a wonderful time of worship and fellowship together that will be made more special by Bella's baptism.
Wednesday, July 8, 2009
Our trip to Nebraska and Colorado went wonderfully. We enjoyed seeing family, friends, and taking in the beautiful scenery. We were so blessed by the obvious way God worked to give us a special experience with Adam's Camp. And now we are so happy to be home. Seth has started back into his therapy schedule and we will also be working on some academics through the summer as we get settled back in.
Bella and Luke are struggling to come down off the "vacation high". They think I'm going to have exciting things for them to do throughout the day, each day - sorry kiddos, vacation's over. They are looking forward to VBS next week - that will satisfy the activity high for the week, then I only have 5 more weeks or so to entertain them until school starts again. Big piles of books from the library each week will keep them busy along with the occasional play date with friends and trips to the aquatic center. I think I'll make use of their boundless energy and have them help me accomplish the long list of things I need to get done around the house, including a thorough cleaning and massive decluttering of closets and the toy room. After that I hope to get some scrapbooking done before starting full time back into the homeschooling schedule in the fall. All this might be a bit optimistic, but it's good to have goals!
We continue to ask God for direction in Seth's therapy/education program. We are considering changing to a new biomedical doctor out of Chicago and are currently on her waiting list and will hear in 6-8 weeks when we can get in with her. We are looking into a hyperbaric clinic in Wisconsin as a possibility for additional treatments with that therapy. This center is a bit more expensive than North Carolina, but would be close enough for Seth and I to come home each weekend. We are talking with the Christian school in our town about a weekly social skills group for Seth in exchange for me teaching a weekly music class there.
Most of all we continue to pray for God's healing hand in our little boy's life. We pray that we will see growth in his life as a result of the great opportunities he's had with hyperbaric and Adam's Camp over the past 2 1/2 months. The journey continues. Sometimes I wish the destination seemed closer at hand; that we were seeing more obvious, major progress, but unfortunately I can't control that. So I will press on and pray for strength to persevere with joy in the midst of the journey.
Tuesday, June 30, 2009
After having a few days to reflect on our time at Adam's Camp I am so thankful for the experience for our whole family. Even though there were no major breakthroughs for Seth I feel the camp was a positive adventure for our whole family. Our final conference with the therapy team did not reveal any major changes needed in our therapy program at home, but it did give us some fresh ideas for approaching skills Seth is struggling with. I was very encouraged by the reports the therapists gave about Seth's ability to adapt to new social situations and learn new routines. Seth loved playing group games such as duck, duck, goose and pass the egg.
We are enjoying our time in Breckenridge, but struggling a bit with altitude sickness as our condo is at 10, 288 feet above sea level. Even Mike, who is in pretty good shape, gets winded from walking up a flight of stairs. Sunday afternoon Bella & I strolled through downtown Breckenridge and checked out the annual sidewalk sales finding some pretty good deals. Sunday night we drove down I-70 to Idaho Springs to meet friends from the Loveland for dinner. Today we all explored downtown Breckenridge and visited a couple museums and enjoyed learning about local history. Unfortunately Seth had a meltdown only about 40 minutes into our adventure so we headed back to the condo - I think he's ready to head home, or at least to the familiar surroundings of Nana and Papa's house.
We have enjoyed each part of our trip and look forward to the last few days of vacation in Nebraska with extended family. All of my siblings will be there visiting my mom and dad so it will be fun to have all the cousins together. Bella and Luke are really looking forward to seeing all the cousins and playing together. We are all also looking forward to the Bergman-Reid picnic at the Johnson Lake on Saturday night. Finally, Sunday we will head home to Iowa and plan to stay home for the rest of the summer.
Friday, June 26, 2009
We are finding this camp a wonderful adventure for the whole family which is truly a blessing. Not only is Seth receiving intensive therapy and having fun at the camp, the rest of the family is able to get some respite and have fun together also. Last night we joined 3 other families for dinner at the Breford's condo. It has been a joy to meet other parents and connect with them also. The Brefords are a couple we've connected with who share our faith and were so excited for us to get to experience Adam's Camp. They were also excited that we had an 11 year old daughter who has become fast friends with our 11 year old daughter (last night we enjoyed dinner at their condo, tonight we had dinner together at our condo and the girls enjoyed the Disney channel movie together and were plotting to have a sleepover).
Over the course of our stay here in the Winter Park area we have seen 5 rainbows. It has been an amazing testimony of God's love for us and his promises to us. The beauty of God's creation is so breathtaking in this part of the country that it makes me want to shout for joy at times. This week has truly been a week of refreshment for my soul even though my body is beyond weary from many late nights and nonstop activity. Getting to share this time with amazing friends old and new has been so uplifting. First with our precious reunion friends who have known us since we were newly, newly married and prayed and supported us through our unique journey of parenting and second with other families who are walking the journey with us - facing the tremendous challenges of parenting a kiddo with autism.
I have felt the goodness of God in an amazing way this week with all that has happened that He clearly orchestrated to bring us encouragement and hope. I know it has been a great benefit to our whole family. Today we were able to meet one on one with a family therapist as part of the Adam's camp program with expertise in dealing with behavior issues and talk through strategies to implement to reduce Seth's head banging and teeth grinding. She has a strong background in ABA therapy (the type of in-home therapy we've done for 5 years with Seth and was able to give us some fresh ideas for his programming along with confirming that what we are doing is spot on.) This was a good time to get a fresh set of eyes to look at our situation.
Tomorrow we finish up camp - there are closing ceremonies and a final parent conference with Seth's therapy team to hear in depth all he has done this week and recommendations for therapy goals and methods. Then we are off to Breckenridge - no not Utah anymore. We were able to exchange our week in Utah for a condo in Breckenridge - a unit that must have become a6vailable in the past couple weeks. We are relieved to not have such a long drive ahead of us since our stay here in Colorado was extended. The big kids were a bit bummed - but Mike and I are overjoyed to not have to drive an additional 18 hours with a fairly quick turn around. We are looking forward to having some much needed downtime after 7 exciting, action-packed, but tiring days .
Tuesday, June 23, 2009
Well this afternoon God answered a prayer that I hadn't even prayed. When we were checking in at the YMCA of the Rockies - Snow Mountain Ranch near Winter Park I noticed a check-in table in the main registration building for Adam's Camp. Staff were wearing t-shirts and there were bags sitting on the table that said Adam's Camp - Realizing Potentials, Developing Strengths. I thought "hmmm" - that sounds like it might be a camp for kids with disabilities.
We were the first of our reunion group to arrive at the camp and were waiting for the rest to arrive so I had the time to ask what this was all about. I spoke with the gal at the table who I later learned was the director of Adam's Camp - and mom to Adam. She told me they had five week-long camps each summer for kids with disabilities and this week was one of their autism weeks. Throughout the week the children received 5 hours of intensive therapy daily from 5 interdisciplinary therapists. Along with interventions for the affected child there is sibling camp each morning and many fun family activities. The lady at the check-in table invited me to come check it out while we were here and see if this would be something we might be interested in for next summer.
About this time the rest of our reunion group arrived and we took off for our cabin. Mike and I told our friends about this neat camp that was going on, and Mike and I wondered if there was a chance they'd had a cancellation and maybe could work Seth in. Our friends encouraged us to go check it out. Mike headed back up to the registration building and spoke with the check-in lady again. When Mike asked if there was the possibility of Seth being involved in the camp her initial response was "no" - this camp usually fills up 9 months in advance and they have people on waiting lists. But she quickly realized that indeed there had been a cancellation and the families on the wait list had been unable to get to Colorado on short notice. They told us this was a first in the 20-year history of their camp. The director also said it seems it was meant to be!
So just about an hour and a half after arriving for our reunion we were attending an orientation meeting for Adam's camp. The other families we met are amazing, the staff is incredible (speech therapist, music therapist, occupational therapist, art therapist, special ed teacher), and the way that God opened this door is pretty cool! That we just happened to be at this camp for our reunion on the first day of Adam's camp is a God thing - a God incidence as I like to call them. The stories that parents are telling us about the gains that kids make during this week are pretty astounding.
I have seen some changes in Seth over the past couple weeks - the small, but observable gains I shared about in my previous post, and a growing awareness of the world and people around him. I have had the sense that we are on the verge of something and with the door that was opened for him to attend this camp I'm hopeful that this week of intensive therapy could be a stepping stone for further growth. So, Tuesday morning Seth will begin Adam's Camp. I am amazed at how God opened this door to provide Seth the intensive therapy I was feeling he needed.
So keep those prayers coming - God is at work. The past couple weeks have been a challenge - I have struggled to keep the hope alive. This opportunity gives me the courage to continue to hope - God is obviously looking out for us and working in an amazing way to guide us to programs that can help Seth. We will probably now be in Colorado through Saturday to finish out the camp and then head onto Utah a bit late - but that's okay as this seems to be where God wants us to be for Seth.
Thursday, June 18, 2009
This week we have begun to see some positive changes in Seth. He has shown some growth in his receptive language skills. We had been working in therapy on Seth's understanding of varied instructions (give me, touch the, show me). For over 6 months we have been working on this and he has struggled to process the entire sentence. We have been putting 8-10 picture cards in front of him and giving him various instructions to "give me the chair, touch the car, show me the airplane". He had been missing the first part of the sentence and only focusing on the last word. Since returning home from North Carolina he has shown understanding of the varied instructions - which is exciting. He is also continuing to use his index finger to point to a variety of items and has been having greater success in identifying body parts.
We are hopeful that he will continue to makes gains over the next few months. I recently heard from some other parents who had done hbot who said they saw the greatest changes 3 months after completing the treatments. Mike and I have begun talking about the possibility of doing more of these treatments if we continue to see some gains. The skills he gains will not be lost if we don't do more, but we could see further growth with more treatments. We are praying about if, when and where we might do more hbot. We are also hoping to get in with a new doctor in Chicago as the doctor we had been working with in Omaha moved to Colorado.
We feel a need to continue to pursue treatments for Seth to help him grow and mature with the hopes that we will be able to keep him in our home long-term and not have to place him in a group home due to safety concerns. This is the driving force behind pursuing various treatments at this point. Thanks to all for your continued prayers - we hope we will continue to have positive gains to report in the coming weeks. I will try to post while we are on our trip to let you know how he is doing.
Monday, June 8, 2009
Seth was very excited to see Bella & Luke and our house and they were very happy to see him too. Luke told me a few days before we returned that he was going to squeeze me with all his might when I got home and that he did - for 10 minutes or more. We enjoyed a couple days with Mike's parents, who had come out to stay with the big kids while Mike flew out to drive home with me. The timing worked out well as they were able to enjoy Bella's dance recital on Friday night before heading home. Saturday and Sunday were kind of forced rest days as Bella and I both had a stomach bug. It was good to rest in my own home - I was happy to at least have gotten home before getting sick. Seth has been a bit of a handful since we got home - hyper and getting into trouble. This afternoon he repeatedly opened the fridge and freezer doors and ran away laughing hysterically (not good for the energy bill).
We are still hoping to see some observable gains in the coming weeks and months. It is discouraging to think that we went through all this for nothing, but I am trying to keep the hope alive. I have been reminded several times since getting home that life is hard all over - we have family and friends who are going through some very challenging times in their lives with situations that are different but similar in that there seems little anyone can do to change the situation. I hold to the knowledge that God is in control, but there are days when I wish the fallen nature of this world didn't wreak such havoc on our lives. It is in these times that I cling to the hope we have in Christ's resurrection.
In his great mercy he has given us new birth into a living hope
through the resurrection of Jesus Christ from the dead,
and into an inheritance that can never perish, spoil or fade -
kept in heaven for you, who through faith are shielded
by God's power until the coming of the salvation
that is ready to be revealed in the last time.
In this you greatly rejoice, though now for a little while
you may have had to suffer grief in all kinds of trials."
1 Peter 1:3-6
I am so thankful for the promise I have in God's Word that this life is not all that there is. There is an eternal life beyond the physical realm we are limited by here that will be so far beyond anything we can imagine. On the really tough days, when I don't know if I can make it through the coming hours this is the focus of my thoughts. A life beyond this one of suffering and great sorrow that will be all that God intended before the fall. A life of perfection where we will worship our Creator in complete holiness devoid of the sins and scars of this world. A life where we will be able to serve God completely with all we have without the restraints of our fleshly natures. I can only imagine, actually really I can't even imagine how wonderful it will be. I'm clinging to the wonder of the future promised us today.
Sunday, May 31, 2009
Some other small changes I've seen this week include Seth learning to buckle his own seat belt and Seth pointing with his index finger. In the past he has always "pointed" with his ring finger and not really very purposefully. Yesterday during a dive he pointed with his index finger at a water bottle and then signed "drink". This morning as we were waking up he pointed at the window and then we played a game of pointing at different things in the bedroom. These are not the changes I'd hoped to see, but maybe they are the start of bigger things to come.
Today we had a full day of exploring North Carolina with good weather. We drove the Blue Ridge Parkway south from Boone and enjoyed the beautiful mountain views, drove over the portion of the parkway called the Linnville Viaduct, hiked up to Linnville Falls, then took a long drive south to Asheville and looped around back home through Boone. The miles and miles of majestic scenery is really amazing.
Seth was not happy with mom for making him hike the half mile up to look at Linnville Falls - (picture above). He did okay until we got right up by the falls - not sure if it was too for him or what. I can promise you though that Seth is feeling better after that hike than mom - boy howdy do my knees hurt - I'm getting so old.
Above is a picture of Grandfather Mountain - the 2 small peaks in the background. And see that little line between the peaks - that's a pedestrian bridge. We didn't brave this trek - even without Seth my fear of heights would not allow me to do this.
Just 2 more days and Mike will be here to wrap up this journey with me. I'm so thankful for a supportive husband, family and friends who have prayed us through this trip. I'm so looking forward to getting home and enjoyed a couple weeks of normalcy before we take off another trip - AHHH!!! We're headed out to Colorado for our summer reunion, then onto Utah for some family time together before spending the 4th of July weekend with extended family in Nebraska. Even though I'm sure I'll be sick of the driving I am looking forward to all the time together with my whole family.
Wednesday, May 27, 2009
I am so ready to be done with the treatments - to get back home to my whole family and try to enjoy the rest of the summer. We still have yet to see any major or even minor improvements with Seth and I'm having a hard time keeping the hope alive at this point. My focus right now is more on just keeping my sanity for the remainder of our time here and getting home to my real life.
The first week of treatment Seth was very tired and consequently, calm after treatments each day. Week 2 his energy started to return and now in week 3 he's a wild man with a lot of energy and seemingly stuck on his vocal stimms (a sound that is what I would imagine a pterodactyl dinosaur making - a piercing shriek of a sound). This pattern of vocalization is particular hard to deal with in small living quarters when outside play is limited because of terrain and rain.
All the families seem to be experiencing similar stress and all are very eager to get this finished. The honeymoon, if there was one is definitely over. Last night while talking to Mike he was saying something about "if we ever do this again...." and I just winced at the thought. Many kids do benefit by repeat sessions, but I just can't go there right now.
My prayers over the last few days have been focused on perseverance. I am feeling worn down and lonely for my family and friends, although I am very thankful for the technologies that have helped me to stay connected while here - can't imagine the experience without that. I am so thankful for the many saints who are lifting me in prayer and know that God's answers to their prayers for strength and peace have carried me through this journey. I pray God will give you the perseverance to walk through whatever journey He has placed before you.
by such a great cloud of witnesses,
let us throw off everything that hinders
and the sin that so easily entangles,
and let us run with perseverance
the race marked out for us.
us fix our eyes on Jesus,
the author and perfecter of our faith.."
Thursday, May 21, 2009
Being confined in a small space not only with Seth but with 2 other autistic boys and their parents for 4 hours a day is proving to be interesting. There are definitely strong opinions on how to treat kids with autism and unfortunately a lot of judgement by some parents toward others for not doing enough or not doing the right things. I am learning the importance of remembering that most of us are doing the very best we can as parents - whether we have kids with disabilities or not and that what works for one child doesn't always work for another. The last thing we need in the autism community is parents attacking other parents - we need to band together and support one another.
I continued to praise the Lord for the blessing of my roommate here at the center. Elena is an encouragement and joy to be around. Please pray for her also as she's been having high blood pressure and has not been able to go into the chamber with her son during treatments the last few days (fortunately he's high functioning enough he can go in alone). Tonight we are looking forward to enjoying a wonderful Cuban meal that Elena made for all the families.
As we reach the halfway point I am trying to keep the hope alive. I am feeling a bit discouraged by the lack of observable gains, by the interpersonal tension with some of the parents here, and generally fatigued by all the travel and being away from home. I resolve to continue to place my hope and trust in the Lord.
give ear to me and hear my prayer.
Show the wonder of your great love,
you who save by your right hand
those who take refuge in you from their foes.
Keep me as the apple of your eye;
hide me in the shadow of your wings."
May God Bless You All!!
Monday, May 18, 2009
On Sunday Seth and I went on an exploration together around northwest North Carolina. On our drive to Boone we saw some beautiful countryside including this barn and church.
We visited the Mast General Store in Valle Crucis - right outside Boone. This is the original store - there are now 10 or 15 locations in North Carolina and Tennessee. This store opened in 1874.
On the back porch entrance of the Mast Store there was a group of musicians picking bluegrass music. We enjoyed listening to the music.
Here's the view of the store from the back, where there is additional parking and a beautiful view of the valley the store is located in.
Seth was so excited to see the MANY candy barrels in the store and went around and picked out the candies that he knew he could eat.
The store had a wonderful selection of toys both new and old - Seth found a bus and sports car that he really liked and we found some surprises for Bella and Luke too!
At the end of our outing we drove along the Blue Ridge Parkway for a little while. Unfortunately it was rainy, cloudy, and cold. We'll have to take another drive on another day when the weather is nicer.
Friday, May 15, 2009
I've been living against the grindstone
Where nothing is sure but the Lord
For He gives me the treasures of darkness
Where faith's greatest riches are stored
And in ways that are quite unexpected
I have learned a most humbling truth
That a faith that has never been tested
Is just growth that is long overdue.
So I'm practicing joy, choosing it daily,
putting it on like a favorite cologne.
And when life breaks me down it won't even faze me.
Some call me crazy but I'm just in love with the Lord.
For He has been faithful, and not just to fill me
To take me to heights I have never explored.
If I'm never broken, how can I be restored?
So I'm trading these comfortable choices,
for living that's much more alive.
And the more that my spirit rejoices,
the more that I grow and I thrive.
If surrender is seen as a weakness,
then the lowliest beggar I'll be.
I'll embrace every struggle with meekness
cause I know that it is making me free.
Restore me, Lord and make me new again.
I want nothing more than to soar.
On my drive to North Carolina I came across this song. God has really been using it to minister to my soul and teach me. Ever since I arrived I've had this song running through my head. There are many truths found in this song that are striking me afresh as I've meditated on these lyrics.
There are great treasures to be found in the journeys of darkness in our lives if we will allow God to mold us and teach us through the process. I pray that my faith has been strengthened and will continue to grow through the trials in my life. I wish there were an easier way - that I could become the mature, godly woman desires me to be without struggles and sorrows, but it seems this is the way that God best shapes us into the person He knows we are capable of being.
In the midst of life's trials it is very easy to become overwhelmed and loose our joy if we are focused solely on our circumstances. But when I choose to focus on God's love, grace and mercy toward me I can choose joy - knowing that the trials we face are temporary in light of eternity and are meant to strengthen our faith.
"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed."
1 Peter 1:6-7
I am so thankful to know that the trials of life will only be with us for a little while. But our faith that is proved and strengthened through these trials will last forever - even longer than gold - all to the glory of God.
As I've gotten to know the other families here at the center I've been struck by how we are all seeking physical restoration for our children through hyperbaric and various others interventions. We are earnestly seeking this restoration. I too am pleading with the Lord for a restoration of Seth's physical health - mind and body. But God has also been speaking to my soul about the importance of continuing to seek soul restoration. I want to focus each day on growing in my spiritual health - my soul is eternal - praise the Lord we will all have new physical or heavenly bodies in heaven. I am so thankful that as a believer in Jesus Christ I can rest assured that I will see Seth's physical body restored in heaven even if I don't see the complete restoration here on earth.
So I continue to pray for restoration - for all the physical ailments of my son and the other children here at the center while I also focus on restoring my soul daily by spending time with the Lord in prayer and Bible study.
Thursday, May 14, 2009
Once Seth is in the chamber he sits in a chair that swivels, which he finds entertaining. As you can see in the photo above, he's excited to be in the chamber.
Hunter, age 9, sits next to Seth during each treatment. They get along well next to each other. Seth is reaching out to touch a small tv screen that plays videos during our sessions. Hunter's dad and I try to work with the boys during the session on imitation and socialization skills. I sit on the floor in front of Seth during the treatment. The other child and his mom sit on the other end of the chamber, where I'm taking the picture from. Along with working with boys, the adults have been chatting quite a bit, getting to know one another and sharing all we've done with our boys. All 3 boys in my group have autism. The blue tubing on the right is hooked up to the oxygen valves. After we pressurize the chamber - which takes about 10 minutes we put on the hoods, hook up the oxygen tubing and turn on the oxygen. Then the boys breath 100% oxygen for an hour at 1.5 ATA.
Here's Seth with his hood on. Once we pressurize the blue tubes are hooked up to the bottom front of the the ring around his neck and the hood inflates a bit more fully. He tolerates the hood well, but still tries to bang his head a bit. So far the hood seems fairly resilient.
Hope these pics and explanation give you a better feel for what we are doing. Thanks again for all your prayers.
Wednesday, May 13, 2009
This is the treatment center. Small, but set up very nicely. The staff has been wonderful with the kids - Seth seems to have taken a liking to James and Sharon especially.
Here's pic of our housing unit (yes it's a trailer circa 1974), but it's a roof over our heads and is right across the road from the treatment center. I was thrilled to see a washer and dryer in the unit - going to the laundromat would not have been much fun!!
Our front porch is a wonderful place to sit and enjoy the fresh mountain air and beautiful mountain views.
Seth's happy in most any environment if he has his legos - too bad we can't take them into the chamber!!
Hope you enjoyed this snapshots - I'll post more over the coming days!
Tuesday, May 12, 2009
This morning we got back in the chamber for our 2nd dive and had a completely different experience - in a positive way. Seth did not cry at all during the entire dive - he watched his favorite DVD - Math Circus, and sat peacefully for the duration of the hour and half treatment. PTL, PTL, PTL!!! Thanks to all for your prayers - God answered them in a big way today.
The Lord has been so sweet to me through this whole journey. He's brought parent after parent into my life through the Internet, through friends of friends, and now here at the center who are sharing their stories of hope and healing and coming alongside and encouraging me to stay the course and know that we will find the right treatments to bring Seth healing. Even though this journey with Seth has been long and hard - I have been so blessed to make so many new, dear friends who have ministered to my soul and encouraged me, along with the many old friends and family in my life who have been committed prayer warriors for our family. I could not have made it this far down this road without all of you - thank you is not nearly enough to say to express my gratitude to all these people and ultimately to the Lord for bringing them into my life.
During my many hours in the van on the drive down I had some wonderful times of prayer and worship where God ministered to my heart and again affirmed to me that I can dare to hope again. I am believing for a miracle in my little boy's life. That's such a scary thing, I am crying as I write this because I want to believe God is going to work through this intervention and yet there is a part of my soul that is so weary from the many times interventions have not showed any significant progress. But I have to believe that all we have done has brought underlying healing to Seth to prepare him for the next treatment and the next, to bring us to this point.
I've come to a realization through this particular course of treatment that I don't think I'll ever be able to say that I'm done with new treatments at least until I see some measure of healing in Seth's life. It's just part of who I am - I will always be looking for the next promising treatment that could help him - just as I am pursuing excellence and healing in the rest of my life, whether it be in how I feed my family, how I relate in relationships, how I carry out ministry, how I interact with residents at work, and the list goes on. God wired me to be always looking forward and striving for the best in life. At times I've viewed this wiring as a struggle with contentment, but God is teaching me to be content with where I'm at and yet pursue the next thing He places before me. I only pray to stay on the path that God has for me and not go off on my own side journeys.
it is fitting for the upright to praise him.
Praise the Lord with the harp;
make music to him on the ten-stringed lyre.
Sing to him a new song; play skillfully, and shout for joy...
the eyes of the Lord are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death and keep them alive in famine.
We wait in hope for the Lord; he is our help and our shield.
In him our hearts rejoice, for we trust in his holy name.
May your unfailing love rest upon us, O Lord,
even as we put our hope in you."
Psalm 33:1-3, 18-22
Blessings to you all!!
Sunday, May 10, 2009
We are in a rural mountain area. The drive to the treatment center today was beautiful with lush, green mountains, burbling streams with some mini rapids, and sections of roller-coast like roads. Bella & Luke would have really enjoyed those roller-coaster like road sections. The nearest grocery store is about 20 minutes away in West Jefferson, which is a smaller community. Boone is about 40 minutes away with more shopping choices including an organic foods grocery. Tonight I decided to stay put and get settled in our housing unit - we'll have to make a grocery run tomorrow. We stopped at Whole Foods (love that place) yesterday so we've got enough to get us through for a couple days.
Our housemates are Elena an JD, a mom and son who live in Maryville, TN. JD is 14 and fairly high-functioning with mainly social skills issues. He seems very sweet and his mom and I spent a couple hours already chatting and beginning to share our stories with each other. We are both chatty Kathys so I think we'll get along well.
The true adventure begins in the morning. Our first dive will be at about 7:30 am central time. I'm a bit nervous now that we're so close to beginning about how Seth will tolerate the treatments. But I am confident God has brought us this far and will carry us through the next step of this journey.
Thursday, May 7, 2009
My excitement continues to grow as I hear from more and more people who have seen great results from this treatment. As many join us to pray for God's healing hand upon Seth during this intervention I am more hopeful than I have been in a long time. I am praying to experience the tree of life spoken of in Proverbs 13:12 - "Hope deferred makes the heart sick, but desire fulfilled is a tree of life."
Below is a list of specific prayer requests for our trip. Unfortunately I can't get the prayer card up on my blog - I will email it to the friends and family I have email addresses for. If you don't get one and would like me to email you one, please let me know.
Please pray for:
Travel mercies - Jenn & Seth will be traveling to and from NC on May 8th through the 10th and June 3rd and 4th.
Living Arrangement Transition - please pray that Seth will adjust to the new living quarters without major problems.
Treatment Toleration - please pray that Seth has no sinus or ear pain during pressurization and that he tolerates the hood (a clear large, clear bubble-like apparatus) that he will have to wear on his head during treatments.
Treatment Effectiveness - please pray Seth responds well to the treatment - pray God will work in a miraculous way!! The treatment session dates are May 11-June 2nd. He will receive treatments Mondays through Saturdays - Sunday is our only day off.
Thanks to all for your prayers and support. Next time you'll hear from us,we'll be in NC!!