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Archive for December, 2012

Today, we took our weekly outing to the library.  We have to drive 45 miles to get there, so usually end up spending the afternoon.  The library has a large children’s area with a play section, computers with educational games, and of course a wide selection of books.

The first thing the kids do is to get on the computers.  We typically will arrive during school hours so that the kids have more uninterrupted computer time.  This is definitely a benefit to homeschooling!  Pookie realized 2 weeks ago that the computers have touch screens.  Now, he is beginning to try to navigate the games himself.  Little Miss has fun playing the games at her level.  Once she is done, she often will aid Pookie as he learns to use them.

A big advantage to coming during the quieter school hours is that Pookie handles it well.  Once school lets out and the children’s area starts filling up, the activity level is often too much for Pookie.  That is generally when we end up heading back home.

We are allowed up to 60 books at a time, so we generally will go home with a tote bag full.  It is wonderful!  I read so much to them that we go through books quickly.  Easy readers for Pookie are always fun.  Little Miss is really getting into the chapter books, such as Little House series.  Those have been a favorite of hers for quite a long time.

It is such a fun way to spend an afternoon.  Tonight, we are making ornaments for the tree.  We are making gingerbread characters from brown card stock.  Tomorrow, we make more clay designs.

It is a busy time.  On Wednesday, we go to my eldest daughter’s home to make cookies with the grandbabies.  I can’t wait!

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It has been one of “those” days that has had more ups and downs than the wildest roller coaster rides.  Thursday night, my beloved husband was able to take his 10 hour break at home.  This was a huge treat.  For those not familiar to the life of a trucking family, my husband is driving 11 hours (on duty a total of 14 hours counting time at customers) each day.  According to DOT rules, he has to take a 10 hours break before he can start his next 14 hours of work.  Usually, the break happens at a truck stop or other location where he can shut down the semi for the duration of the break.  On Thursday night, he was close enough to home that he was able to be here for that break period – a rare treat!    We were so happy to see him before the weekend, when he is usually home.  He had to leave back out on the truck before dawn this morning.

First thing when Pookie was up, he began wandering around the house and became upset.  You guessed it.  He found that Daddy wasn’t home.  He doesn’t understand the passage of time and so is unable to comprehend that Daddy will be back Saturday morning.  All he knew was that Daddy tucked him into bed that night and was missing the next morning.  His mood was a sour one all day.  He was cranky and simply “off” all day long.  Nothing pulled him out of the mood.

At one point today, Little Miss offered Pookie a drink from her soda.  She had a carry out cup with straw that she had left over from our lunch in town.  Pookie, who only uses a sippy cup, put his mouth on her straw and then backed away from it.  She offered it again after taking a sip of her drink.  He kept simply putting his mouth on it and backing away again.  I could almost imagine him thinking, “Okay, I touched it with my mouth, now what do I do with it?”  Eventually, he took a small sip of her drink through the straw and looked shocked that the soda was in his mouth.  It was priceless!  That surprised “how did THAT happen” look was so funny to see.  She offered the drink again, excited that he had actually took a drink from her soda, but he steered clear of it.  I guess he is needing time to process what just happened before trying again.

Homeschooling Pookie today was not an option today.  His mood was so off that trying to get him to do any preschool would have been more struggle than effective.  We have some days like this.  I have learned that the day after Daddy goes back on the truck is never a good day to preschool him.  I was able to read to him, but he was not cooperative when it came to practicing his colors and shapes.  He was content to hear the stories, but wouldn’t point to any of the pictures when asked.  Usually, we will have one day like this.  After that, he will cooperate with the lessons much better the rest of the week.

Tonight, I finally got him to cooperate enough to at least do some of the dressing for bed with my help.  Some nights, after a rough day, he wants me to do it all for him as I would for a young toddler.  He helped tonight though.  Over the past month, he has been trying a little more than he has up until now.  Tonight he actually tried to pull his shirt over his head on his own.  He got very frustrated when he didn’t do it, but he gave it a go.  At times like this, I see firsthand what the  specialists meant when they told us that the tasks that take a typical child 3 steps to do will take him about 30 steps to complete.  As long as I see him trying and making those tentative baby steps forward, it is good though.

Little Miss is such a great cheerleader for him.  She is always proud as can be when she can get him to try something new.  We are proud of her also.  She has such a tender heart for her baby brother.

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Can I vent a bit here?  Over the past 3 years, since our son’s diagnosis, I have found a troubling issue.  To date, I have found not a single support group or organization who has support for families with children who have Classic Autism.  Shocking, right?  You would think that there would be something out there for us, but I have yet to find one.  It seems that the support, even in groups with the words “Autism support” in the title, are mainly a support resource for families with an Asperger’s or PDD-NOS diagnosis.  So, what is the big deal?  Let me first explain that while they are all on the spectrum, there are 3 big differences between Classic Autism (aka Autism Disorder, Infantile Autism, and Kanner’s Syndrome) and the more understood, Asperger’s Syndrome.

According to the Autism United, there are 3 primary differences between Classic Autism and Asperger’s Syndrome.

1. Cognitively, those with Classic Autism have delays that they often never overcome. Those with Asperger’s are often very intelligent and test at or above average in cognitive abilities.

2. Those with an Asperger’s diagnosis may have some speech delays in part from lack of use but are on track with their peers in speech ability.  Those with a Classic Autism diagnosis have speech developmental delays and a large percentage (I read over 80% on another website) never develop an ability to communicate through speech.

3.  While those diagnosed with Asperger’s will typically be uncomfortable in social situations and often behave in a socially awkward manner, they often are wanting that social contact.  Those with Classic Autism are typically completely unaware of any need for social interactions.

What these differences mean to me as a parent going to a parents’ support group is that when parents of Aspies or those with PDD-NOS are talking about how therapies, supplements, dietary changes, and in some cases medications have helped their kids, I am at a loss.  There is very little common ground.  While our children have the spectrum in common, the daily issues that comes along with it is different.

Some parents complain about their child being socially awkward and at times violent when things don’t go as the child thinks that they should.  Our son often appears to not even notice there are others in the room.  If a toy is taken from him, he simply ignores that and walks away.

Some parents talk about how difficult it is to get their child to learn social stories and how to appropriately talk to others.  Our son never speaks other than the rare chatter/vocalization that you might expect from a 6 – 8 month old who hasn’t learned letter sounds or words yet.

Parents talk about the wonders of ABA therapy and what marvels it has brought to their child’s life.  I am happy for them that it worked for their child.  It was a total flop with our son.  I have learned to work around that, but the hardcore ABA supporters are shocked that I would not force ABA onto our son whether he complies or not.  We did try it for a few months, but got nowhere.  I found a gentler approach worked best for him and got more progress with it.

Many parents that I have spoken with are firm believers in the wonders of the DAN doctors’ protocol of supplements and other treatments.  While I and my husband do agree that a healthy diet is best for everyone, we do not believe the DAN approach to be the cure-all that many parents say it is.

These are only a tiny bit of the differences that we have found that demonstrate the difference between the issues we face in our home compared to the issues that parents of Aspies and PDD-NOS children face.  Aspies and PDD-NOS have a much higher functioning level than our son.  That in and of itself makes a huge difference in the way our lives are lived each day.

Sadly, I have never found a group that has even one member/family that has a child with Classic Autism.  The popular nationally known Autism organizations cater to the moderately to high functioning diagnosis.  It makes sense in a way. Over 75% of the diagnosed cases are Asperger’s or PDD-NOS.  Those with classic Autism only make up about 20% of all diagnosis.  It is understandable that the information and trainings are geared towards the majority of cases.  In the years since our son’s diagnosis, I have always received email updates of conferences and workshops to train professionals and families about how to work with those diagnosed with autism spectrum.  I have yet to see even 1 workshop or session at a conference that addresses something that we can do with our son.

The therapists that we had through early intervention were a mess to deal with. Even though they were provided a copy of the detailed report for our son’s diagnosis and what he would need, they ignored it completely.  Instead, they had their own agenda of what they wanted to do and acted as though he were a higher functioning child instead of working on building up from where he was currently.

I think one of the most ugly and hurtful parts of this whole thing is that there are those with higher functioning kids who have come right out and said that if we wanted our son cured, we would do the therapies, drugs, and treatments they have used. One came right out and said (quoting Ms McCarthy, I believe) that parents who don’t do the DAN protocols with their children are not wanting their kids to get cured.  That is a positively evil thing to say!

Classic Autism is a neurological disorder.  It is NOT curable through supplements, therapies, drugs, or diet.  No matter what we do, our son will always have autism.  That is the fact.  If the protocols and such helped their kids, that is great.  Don’t you judge us however if we do not see the benefit in doing things YOUR way.

I am with my son 24 hours a day, 7 days a week, 52 weeks a year.  I know what works with him and what does not.  I know his dietary issues and we have changed our family’s diet so that we all are eating as he does.  We are working on teaching him and our daughter to do ASL signing in conjunction with speaking to him.  He has a method of communicating with us that is unique to our family.  His method is one that makes his feelings and wants obvious to others around him.  We have learned that he can communicate through pointing to pictures or objects.  My next project is taking a lot of pictures of his favorite things, activities, and foods to make a communication board for him to use.

In homeschooling Pookie, we have found that he needs many breaks in between his activities.  About the only time he will sit still is when he is painting or sitting with me as I read to him.  He does listen though, even when walking in circles around the room.

Our days with Pookie are not complicated, but they are definitely different from a typical child his age or a child who is higher functioning.  In some ways, he is like a young toddler instead of his nearly 5 years of age.  There are basic skills, such as feeding himself, that he is unable to do.  Not because we spoil him, but because he seriously is unable to do it at this time.  We know he will one day, and encourage him to try, but for now he is not able to do so.  At his age, we still have to aid him in dressing.  He can do a little, such as put his arms into the sleeves when you hold his shirt.  But he doesn’t even attempt to try on his own. The list goes on and on.

I have decided to post more on this blog about what daily life is like. I will of course have homeschooling and family information. With such a lack of information and support for families with low functioning Classic Autistic children, I want the blog to be a place where they can find someone who is going through it too.  Maybe even find encouragement from time to time.

I have felt so alone in this journey at time.  Yes, I have my husband and my faith in the Lord, as well as the prayers and encouragement of our church family.  I have never met anyone though who has a child like ours.  Someone who is walking along this path also.  A person who understands the daily challenges that we face in a world where our children’s needs are often overlooked by professionals who are better trained to work with the moderate to higher functioning children.

I don’t want others in our situation to feel alone.  Maybe, along the way, we will learn that we are not alone either.

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I have been looking at more ideas on ways to help our son to be able to communicate what he is learning.  One method that I am looking at is the flannel board activities.  It seems to be a natural progression to me.  It would provide not only the method to practice & communicate information learned, but adds a sensory activity through touch.

I did a quick search online and found a very fast & easy project on the Dr. Jean & Friends blog.  On the blog, she shows how to make a mini flannel board out of a file folder.  In simple terms, she turns the file folder into a pocket to store the flannel board figures with the outside of the folder being the flannel board.  I won’t post instructions since she has a wonderfully simple tutorial with pictures at the link above.

I am looking at her idea in a couple of ways.  Often, we have need for various colors of background.  For our son, there may be times when a brightly colored background may be distracting.  In that situation, a neutral color background may be best.  Yet there are times when making the scene from a story that the colors can be brighter.

The flannel board figures can be stored in a binder until needed.  Place a labeled sheet of cardstock into a sheet protector with the figures.  When needed for a lesson, the figures can be removed from the sheet protector and placed into the flannel board file folder’s pocket.

I am now searching for ideas of activities.  My mind is spinning with what I am wanting to make, just wanting to see what printables I can find to turn into the flannel board figures.  Print the items to be made into flannel board figures onto cardstock, color if necessary, laminate, then add the rough side of adhesive-backed Velcro onto the back of the figures and you’re done.

Looking at the various free file folder activities available, these would easily be made into flannel board activities.  There are so many available.  By turning the file folder games into flannel board activities, you avoid having to buy so many file folders to make the games.  Storage of the figures in baggies or in sheet protectors in a binder will take up far less space than my file folder game collection is taking currently.  I may simply get a few pizza boxes from the local pizza shop to turn into stackable storage boxes that can be labeled by subject.

 

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Wow!  I hadn’t realized how long it had been since my last post.  With the holidays and all going on, the thought of posting a blog had truly not been on my mind.

The kids and I are falling into a routine now that is a comfortable fit for us all.  We rise early, then after breakfast, Little Miss starts on her workboxes.  Math is usually her first assignment.  She enjoys the lessons but especially likes to get it done and out of the way so she can read and do the hands-on lessons.  Some days, I have a file folder game tucked into a workbox  for her just to give a bit of review as well as variety.  Her favorite surprise in a workbox was a little “”tea party” card. By the time she was ready for that workbox, I had some little sandwiches, buttermilk scones, and jam ready as well as water heated for our tea.  She loves these little unexpected moments.  I enjoy them too.  It just makes the experience more fun for both of us.

Pookie is going slowly but steadily through his schooling.  I find that most of his schooling is a 3-fold process.  First, I read to him a lot each day.  Secondly, I we do hands-on projects that build on his fine motor development as well as creativity.  The third part is the most important, in my opinion.  I talk to him about everything.  If he is hanging out with me, I talk about what I am doing, often enlisting his help wherever possible.  I talk to him as though he understands every word that I say.  I ask him questions that I know he is able to answer in his own way.  One example was when I asked what he wanted for lunch.  Now, just to make it clear, I want to remind you that he is nonverbal.  Pookie walked to the refrigerator and waited for me to open it.  Once opened, he pointed to the carton of eggs.  I got them out and asked if he wanted scrambled eggs for lunch.  He walked into the pantry and pushed my hand towards the loaf of bread.  We took it back into the kitchen and I asked if he wanted eggs and toast.  He gave no reaction, so I tried another guess.  Did he want french toast?  At that, Pookie smiled at me.  Okay, french toast for lunch it is!  Now, that may seem a simple thing to most people.  Here is what I saw happen.  1.  Pookie expressed a need – he wanted to eat.  2. Pookie expressed a choice in his meal – eggs & bread.  3. He knew that to make french toast, I use both eggs and bread!  That in itself shows a cognitive understanding at a higher level than he was thought to have.  During all of this, he never spoke a word but his needs & preferences were made very clear.  It was a huge step forward.

We are working on the holiday preparations still.  We were given a small tree to use.  It will be our first Christmas tree.  I made some clay which we are using to make the ornaments.  Little Miss came up with a wonderful idea as a family project that she is leading.  I cannot speak of it here yet as members of our church read the blog and it is something she is doing for them.  It is humbling that she thought of it however.

 

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