Saturday, July 31, 2010

This and That

First, I want to thank everyone who has contacted me via comments and email to express their encouragements and support regarding my last post.  I know that the post was one that is not my usual style.  I have been considering having a journal of the Autism experience from a Momma's point of view.  Then, it was put on my heart to share it here in hopes that as our family walks the path given to us, the posts may become an encouragement to others.  I have been finding that one of the setbacks for the parent of a special needs child is the sense of being alone.  Friends and family can offer some amount of emotional support, but there are times when you really NEed to connect with someone who is going through it and knows first hand what you are experiencing.  I am still thinking about the idea of doing a journal/blog specific to Micah and our family's journey with Autism, if I do choose that route later on, I will certainly have it linked to this blog.
Recipes - In the past week or so, I have been receiving email asking for me to share my canning recipes.  Thank you for the interest!  I will gather them up and start posting them to my recipe blog.  I have been wanting to get that blog going again and it seems this is a good time to do so.
Now, for a big piece of news. After about 2 years without electricity, Joe and I have made a decision to make a few changes.  With his new job, we are planning to rewire the house.  The wiring was in bad need of replacing at the time when we had the electricity shut off.  So, we are taking the opportunity as we fix up the home to get the wiring taken care of.  We have been taking stock of the realities of our lifestyle, taking into account Joe's new job, Micah's needs, homeschooling Abigail, and my age/health.  We agreed that the 2 largest challenges that I have is the laundry and the heat.  We are going to wire the house so that we can get a washer & dryer.  Though I will still be using the clothesline as often as possible, the dryer will be a blessing in winter and in the rainy season.  The washer will be a blessing in that it will free up time and be less taxing on my body.  I have been noticing that on hot days or in the cold, my fibromyalgia flares up much more.  I have been having chronic pain more often again which is frustrating when I have been medication-free for over 3 years now.  Joe is wanting us to have the ability to use fans in the summer and if needed, an a/c for the bedrooms so we sleep better at night.  It will also make a cool room available in case the heat is too much for anyone.  The other 2 things we will do with the wiring is have a couple of outlets available.  One will be for the laptop so that I will have more access to it both for contact and for homeschooling.  The outlet will also give me the ability to keep the cell phone in the house while charging it instead of having it in the van.  The second outlet will be for the radio.  Joe is wanting to put in a ceiling light in the living room and kitchen/dining room.  On overcast days, these rooms do not get much light due to being on the north & northeast sides of the house.  In winter especially, we end up having to use oil lamps much more often.
We don't see this move as a step back.  We are still going to be living much as we do now.  The electricity is only going to be for a very few things.  No TV or buying of a lot of electrical things.  We are simply getting things set to where we can be more efficient in our lives.  The only new things that are planned to be added are the washer & dryer, possibly a printer for the computer, fans, and only if truly necessary, an a/c for the bedrooms.  One luxury that we are definitely looking into is Internet access at home.
One thing that we are looking at is the monthly expense for batteries, fuel to drive to a library to use the Internet, and the time factor.  Yes, it is a matter of convenience.  Taking care of family needs, homeschooling, and therapy for Micah takes up Most of my day.  Having the ability to research in the evenings after they go to bed will be a blessing. 
We are looking at options for alternative energy that is affordable, but if nothing is found by spring we will go back on grid.  We prefer to stay off-grid, but we are being realistic.  Joe is determined that the kids and I do not go through another hot summer without some form of relief.  So, the search if on to find an alternative energy source that is not going to cost us 10's of thousands of dollars to set up.
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Friday, July 30, 2010

Is the Lord STILL Sovereign?

Some time ago, Joe and I were able to hear a sermon given by our Oklahoma City pastor, Pastor Mike Rasmussen, of the Crosswalk Community Church.  In the sermon, the main theme was one of whether or not the Lord is still sovereign in our lives in spite of what trials we go through.  At the time that we first heard this sermon, I loved the message it brought.  I would never have known though just how deeply it touched me until this past week.
As you already know from my previous posting, Micah had his assessment evaluation the past Tuesday, July 27th.  Though we were prepared to hear that he had Asperger's, we were caught way off guard with the diagnosis of the actual Autism.  In his scored on the standard tests for his age, they found that his understanding of what is said to him is that of a 6 month old, he speaks as a 10 month old, and has the cognitive reasoning/thinking of a 5 month old.  Another words, at 27 months of age, he is about 22 months delayed in his cognitive reasoning and his understanding of what is said to him.  This news devastated me.  I knew that he had experienced a setback recently, but I had no idea that he was so delayed. 
In the conference with the doctors after the assessment, I kept thinking to myself "please don't say he has retardation" over and over in my mind.  I was relieved when they never said the words.  I thanked the Lord for it, but..... What about Micah?  The challenges he will face just seemed to double or triple in my eyes.  All of the "what if's" began coming into my mind.  I felt like I had just been tackled by "Refrigerator" Perry at a flat out run while I was standing still.  I felt like I was in shock in some respects.
I never got angry with the Lord, but I wasn't involving Him at that moment either.  I felt mute in the idea of praying or communicating my heart to the Lord.  I have always known that the Lord had created Micah and allowed him to be Autistic for a special reason.  But this is my baby!  Children with Asperger's Syndrome are able to integrate into society fairly well if given the proper tools to do so.  Joe and I have watched YouTube videos of people with Asperger's describing what their lives are like.  They took the "scary" out of it for us.  Yes, Micah would have had to face challenges to Learn to communicate with others, but it was "do-able" to me.  The only reference that I have ever had with the actual Autism was the movie, "Rain Man."  My son is NOT the rain man!  The Lord wouldn't do that to my precious baby boy! 
Diagnosis: Autism.  There, they said it.  Were they saying that Micah will become the rain man?  It can't be that!  My little "Pookie" laughs and is mischievous.  He tries to play with us.  We blow bubbles and he gets excited, dancing his little awkward dance, giggling as he watches the bubbles and breaks them. He becomes excited when he knows that Daddy is home.  When I walk in to get him up in the morning, his face lights up.  Surely, this is not the rain man! 
Diagnosis:  He has the understanding of speech of a 6 month old & the cognitive reasoning of a 5 month old.
Recommendation: Micah needs to be taught PECS or sign language to communicate, but first he must be taught how to pay attention so that he is able to learn to the communication skills.  Dear Lord!  What are they saying?  We have to teach Micah how to learn before we can teach him the communication skills that he needs?  My heart is dropping the more they talk.  My mind is screaming, "You are talking about the wrong kid!  You have another mixed up with my son!"  As they kept going on, I went through the acceptable motions.  I asked questions and such.  My mind seemed detached however.  It was as if I was working on 2 different levels at the same time.  Part of me was taking it all in and the other was screaming in denial inside.
In my past, I have been through more than a person should ever have to deal with.  Never did I question that the Lord was with me.  I knew the Lord was there and guiding me.  Then, we get this diagnosis about Micah.  It did what living for a time on the streets had not even managed to do.  I was broken.  When I thought about all of the challenges and struggles ahead for Micah, my heart broke to the point beyond pain but one of numbness.  My emotions swung back and forth like a pendulum from numb to sobbing. I called Pastor Brian, our pastor at St. Paul's United Methodist Church, located much closer to home.  He was awesome in his compassion and council.
The next day, I still was weepy and felt distress over what we had been told.  Though I didn't blame the Lord for it, I still couldn't bring myself to pray either.  I went through periods of functioning well, then crying over it all.  Why this?  Why to Micah?  Did my being 45 years of age when I had Micah have something to do with it?  Did I do this to him?  How can I say that I love my son when I did something like this to him?  On the heels of that thought, I stopped myself.  No!  I adore Micah.  He is my precious son.  I went through a rough time just carrying him, having to have labor stopped 3 times, then put on bed rest until his birth at full term. If I had known prior to becoming pregnant with him that he would have a special needs issue, I still would have felt blessed to have him.  I refused to allow myself to feel guilt for being an older Momma.
By mid-day one thought started hounding me.  I could almost hear Pastor Mike asking during his sermon, "Is the Lord STILL Sovereign?"  I tried to ignore it, but just as compassionately persistent as Pastor Mike is, the thought kept coming to me.  I refused to answer that one, even to myself.  How should I know?  The Lord had just stood by while someone ripped out my heart, stomped on it, then shoved it back in sideways.  No, I wasn't bitter over it.  I was too numb to feel bitterness.  Too angry at autism.  And too angry at myself from not being able to make it all better for Micah.
Today is Friday.  It was 3 days ago that we learned Micah's diagnosis.  I still feel numb at times.  It is hard to wrap the mind around what the tests indicated.  I'm not crying as much, though the tears are there in my heart.  I am choosing to focus on a couple of things. 1. Micah is still the same little boy he was before we walked into that assessment.  2. I know in my heart that Micah is more intelligent than a 5 month old.  I have watched him reason things out and come up with the accurate answer.  3. I am being proactive and getting the resources lined up to give Micah the best chance possible.  4. I am determined to learn the skills needed to homeschool Micah as planned.  5. I am redirecting my feelings about his diagnosis into a more constructive way of expressing it - I am becoming Micah's advocate even more than previously. 
As for the opening question, "Is the Lord still Sovereign?", I am acknowledging that He is the one in control.  I know that He has a purpose in creating Micah to be exactly as he is.  I know that one day Micah may very well be a testimony of the Lord's grace to others.  I am accepting these things.  In my human-ness, I have to admit that I am not happy about it.  At this time, I only see the struggles and challenges that Micah will face in the future.  As a Momma, I have a hard time with the idea that my child may have to struggle harder than anyone else just to be "socially acceptable" in the world's eyes.  But is the Lord still Sovereign?  I have to say that yes, He is.  It made been in a resigned tone that I say it right now, but I have to admit that He is Sovereign.  I have to believe that He is or there is no hope for Micah's future.  The Lord must be Sovereign or none of this makes any sense.  This doesn't make me any happier about the diagnosis.  It doesn't take away the pain in this Momma's heart.  But the Lord being Sovereign does give me that glimmer of hope.
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Wednesday, July 28, 2010

Micah's Diagnosis

Tuesday, July 27th, we took Micah for his long awaited Autism Assessment evaluation appointment in Oklahoma City.  What a day it turned out to be.  Up until the appointment, we had been given belief that he's high functioning or another words, has Asperger's.  How wrong we were.
The team at the Oklahoma University Child Study Center were great.  We were made to feel very welcome and at ease with the entire process.  Micah wasn't so sure about it at first but once I took off his shoes so he could go bare foot, he calmed down quite a bit.  Micah only wears shoes outdoors.  Indoors, he will fuss and cry if you make him wear them.  Seems that he enjoys being able to feel the floor with his feet.  We were welcomed by a gentleman who is the parent of 3 special needs children.  I believe that he said they are all autistic.  He took us into a room where Micah could play and get settled in.  We were brought up to speed on what would be taking place that day.  Next, we began meeting the rest of the team of doctors who would be observing and evaluating Micah.  The team spoke to us about our concerns and what we would like from their evaluation.  Our primary concerns were: 1. A diagnosis as to what Micah's exact issues are,  2. Recommendations to help us in providing therapy he needs, and 3. We wanted to have information about resources & support available.
I was impressed on how easily they were able to take various forms of play and use them to test Micah's understanding.  One game was showing him a little car then hiding it under one of two washcloths.  He was then asked to find the car.  Sadly, Micah just sat on my lap and did nothing in response.  All the while, the 2 doctors testing him would take turns trying new little games with him.  At one point, Micah got stressed and had to get off my lap to walk in circles while finger flapping.  He then was brought back on my lap to finish this part of the testing.
Next, the same 2 doctors took us back into the larger play room and observed him with toys on the floor.  Micah simply walked in circles around them and never tried to play with any of them.  They were simply an obstacle to walk around.  The toys were picked up and 1 of the doctors then tried to engage Micah in playing with her.  One thing that she did that got his attention was blowing bubbles.  He loves bubbles!  He would watch her do so but had no way to ask her to continue when she would stop for a moment.  After this, Micah was given a very thorough physical exam.  This part he did very well.
After a brief time of the doctors consulting each other, they prepared the report for us.  Here is the core of the issue.  Micah doesn't have the more mild form of autism known as Asperger's Syndrome as was believed.  Micah has the more intensive version known simply as Autism.  The worst part is that at age 27 months, he is speaking as a 10 month old and has a 6 month old's understanding of what is said to him.
This diagnosis was a blow to us.  We knew that Micah would have obstacles and challenges ahead of him, but this diagnosis just increased them.  Personally, I feel heartbroken when I think of how hard he will have to struggle to overcome his challenges.  We were given some resources to give us both support from other families with autistic children and therapy resources that will work with us and coach us in how to do therapy with Micah.
This diagnosis wasn't want he hoped to hear, but now we know what we are dealing with and how to help.
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Wednesday, July 21, 2010

Homeschool Preparations

Hard to believe that the new school term is nearly upon us.  Abbie will be starting Pre-K (called K4 at the local schools) in a few weeks.   With all of the preparations for Beloved to start his new job in August, I am waiting until after he has left to begin homeschooling Abbie.  We have been talking a lot about the homeschooling and decided to choose a method that would benefit both Abbie and Micah.
A highly recommended method for special needs children, that also works great with typical children, is the Charlotte Mason approach.  It is a literature-based curriculum.  We are adapting that method to suit both of the children.  Charlotte Mason believed in encouraging young children to explore the nature around them.  She also encouraged parents to utilize a child's natural curiosity as a learning tool.  Classic literature and living, whole books are used as the basis for learning about history and science.  Living books, as I understand it, are non-fiction.  Whole books are simply the unabridged versions.  Classic literature for Abbie's age would be books like Beatrix Potter's Tales of Peter Rabbit, Aesop's Fables, and the like.  The books are chosen for their wholesome qualities. 
I am incorporating into the curriculum, the use of file folder games and lapbooks.  Hands-on activities are an important method to use when teaching autistic children.  It is also a great way to reinforce to children the lessons they are learning.  In some states where a portfolio is required of homeschooling families, lapbooks also can provide documentation of lessons learned.  With Beloved going to be away from home so much with his new job, the lapbooks will be a way that the children can share with Daddy what they have learned while he has been away.
I found Ambleside Online, a website where you can access book lists and curriculum information using the Charlotte Mason approach.  Their detailed explanation of the Charlotte Mason approach is one of the best that I have found.  On the site, you can find curriculum suggestions such as schedules, year by year guidelines of what to teach, a suggested book list for each grade level, and more. Whether you use the Charlotte Mason approach or not, the book lists are a great resource.
Lapbook Lessons is a site that has free lapbooks complete with the printable components.  There is also a members forum where you can share lapbook ideas with others.  The lapbooks on the site are very helpful.  The photos of a completed lapbook are detailed enough to give even a novice the idea of how they are put together.  The printables give you the option of black & white or full color on many of the sheets.  You can find a wide array of ideas and templates to use in creating your own lapbooks.
If you are interested in learning about Charlotte Mason's approach to learning, you can do so at Heart of Wisdom's website.  They are a business, but there is a good selection of free materials and information.  They have free downloads available of their Heart of Wisdom book.  I found the excerpts to be quite helpful.  Two of my favorites were the one on Bible Study and the one on Notebooking.  Notebooking utilizes scrapbooking in a similar way as lapbooks do.  The student makes a scrapbook page that illustrates a lesson learned.  There is also a wonderful explanation of using a Timeline notebook to help a child learn how each event, discovery, and historic moment in history relates to others happening at that same time period.  Instead of learning the events as being separate, the student sees a bigger picture of what was happening worldwide.
A free homeschool record keeping software that I found is called Homeschool Tracker.  The basic version is a fully functioning program available for free download.  They have a premium version that is available for sale.  In reviewing the program, I found that the basic version will serve our needs very well.  The program allows you to keep record of assignments, grades, attendance, curriculum resources, field trips, and more.  A great feature is that you can print out quarterly reports if your state requires you to provide them. 
Positively Autism is a blessing to have found.  If you are homeschooling a special needs child, this site may be of help.  There are ideas and free teaching helps available on this site.  One of the freebies that they offer is printable file folder games.  Though they are designed for special needs children, I find that Abbie has been enjoying and learning from them as a preschooler.  One file folder game that Abbie enjoys is the addition game with 1's and 2's.  The game board has pieces attached to the inside of a file folder with the equation answers on them.  The game pieces are the actual equations.  To play, the child matches the equation with it's answer. 
There are many free resources available.  These are just a few of the ones I am utilizing with Abbie and Micah.  Though Micah is young, I include him as often as possible.  I read to him as well as Abbie and give him the opportunity to finger paint and do other crafts that are at his ability level.  Though he is not ready to homeschool, I am trying to fill his mind with books and as many experiences as he enjoys.  I am convinced that this is essential to him.  By reading to him, he hears more words that one day he will remember and use.  Already, we have heard him in the past say things that we had no idea he knew.  This comes in large part to reading stories to him and talking to him as though he were a typical child.  Offering him the chance to do tactile activities with Abbie expands his knowledge and experiences also.  I work with him in a low-key fashion at this point.  I want to expose him to these things without overwhelming him.
It still amazes me that we are preparing to take this journey.  I would never have thought that at 47 years of age, I would be starting to homeschool a pre-K age and a toddler.  The Lord always has His surprises that we are blessed with in life.  Thankfully, life here is never dull.  There is always a new opportunity to bless and be blessed around the bend.
May the Lord's blessings be with thee,
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Monday, July 12, 2010

A Setback for Micah

For the past few days, Micah has been struggling.  He got out of routine and became over stimulated.  Last Wednesday, he and Abigail spent the day at their Grandparents' home as they do each Wednesday.  On Thursday, we took the kids to Shawnee to run a few errands.  By evening, Micah was showing signs of over-stimulation.  Normally, the day after he has been out of routine, Micah will withdraw and need his "Micah time" to decompress from the over-stimulation.  This time, it went much deeper.  He was very stressed and fussy.  Towards evening, instead of being back to his usual happy self, he was crying and screaming as though in pain.  It was a bit like having a colic baby that screams & cries and cannot be comforted.  He stopped trying to feed himself a bottle, no longer made eye contact or interacted as he used to, and he was zoning out nearly constantly.  It was heart breaking!  In such a short amount of time he had turned back the clock to a year ago when he was first diagnosed.  It was as though all that work he had done to progress and learn to interact was gone.  I looked at Micah and wondered, "Where is my happy little boy?"  It was as though a switch in his mind had been flipped and shut him down.
We took Micah to his doctor on Monday.  We wanted to eliminate the possibility that there could be something physical bringing on the changes. Thankfully, there were none.  He is very healthy and is doing well physically.  She did note that he has really sprouted up in height since his last visit in March.  She believes that he may be experiencing some growing pains in his legs that are causing him to be uncomfortable.
We talked about the changes that our family is going through. Joe has been home on vacation for the past week, which is a change in Micah's routine.  In early August, Joe will be changing jobs and start truck driving.  He will be away from home 4-6 weeks at a time.  Another routine change Micah will be facing with us all.  The doctor believes that Micah hit a wall and regressed to a more comfortable place so that he can deal with the changes.  This is common among autistic children.
Micah will gradually work his way through the changes and get back to where he was.  It is a process that involves taking a few steps forward, then a step or two back before making further progress.  Autistic children process their growth and routine changes differently than a typical child.  All children hit that wall from time to time.  They get overwhelmed and stop progressing.  Often, you don't notice this because a typical child will simply focus on something else.  It will be easier to notice with Micah and children like him.  When they hit a wall, it will become readily apparent in their behavior.
So, where is Micah right now?  He has definitely lost ground.  It is not as bad as we thought though.  The doctor noticed improvements that Micah had made since his last visit and which were still evident.  He took her hand for the first time and allowed her to examine him while sitting on her lap.  Neither of these were things that he did previously.  Yes, he has taken some steps back, but she thinks he will regain them quickly and move forward.  She advised us to let him have the "Micah time" that he needs then gradually start working with him again.
We are now anticipating that Micah will likely regress again when Joe leaves out on the truck for the first time.  It may take several times before Micah begins to see it as a routine.  Now that we know this is likely to happen, we will be prepared.  We are leaving the situation in the Lord's hands.  We are praying for His guidance in how best to help Micah through the necessary changes that our family is facing. 
This experience is showing me even more that our plans to homeschool Micah using the Charlotte Mason methods will be the ideal for him, as well as Abigail.  He needs something that will be a gentle method of teaching and not give him cause to stress out and shut down due to the pressures of getting through the textbook on time.  I will write more about our homeschooling plans in the next blog entry.
May the Lord's blessings be with thee,
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Wednesday, July 7, 2010

Preparing for the Changes

I want to first thank everyone who has contacted me about staying in touch while Joe is out on the truck. What a blessing you all are! It is very sweet to see the support and outpouring of friendship that you are extending.

I am making a few minor changes to the way I will be doing the computer. Until now, Joe has brought the laptop to town with him several times a week to send/receive emails. Once he is truck driving, I will only be in town twice a week. On Sunday when we go to church and on Wednesday when I run errands while the children are at their Grandparents' home. I will have the ability to type up blogs and emails in between those times, but they will only be posted or emailed on those two days. I am able to check my email through the cell phone, but an very limited on replying. I have thought about resetting the comments to be posted without having to be moderated, but I cannot do that at this time. I have had very mean spirited things sent as a comment as well as blatant ads for businesses. Neither of which do I allow in the comments.

We are spending a lot of time together as a family. Mostly have been working to prepare the homestead for Joe's job change. He's wanting to make it as easy as possible for me to maintain while he's on the truck. We have been playing games and having fun together also.

We have a large grocery shopping trip planned the end of tihs week. I'll be canning more meals and such for Joe. In addition to his pint jars, I'll be canning up some quart jars for the kids & I to have on hand at home. Then, there is the packaging up servings of homemade muesli and making a gallon of granola for Joe to take along with him.

There is a surreal quality to the upcoming job change. I know it is going to happen, but it doesn't seem real yet. I am just taking each day as it comes and preparing as best as I can to make it easier on all of us.