This Month’s Miracles:

  • Evan initiated a ‘high-five’ with me and actually said ‘five’. Amazing!
  • Evan ran up to Tessa and wrapped his arms around her – he said ‘hug’ while doing so!
  • Normally, we leave Mammie and Gramps house through the garage door.  However, the other day we left through the front door. Evan recognized that we were leaving and said ‘bye’ numerous times.
  • Evan has been saying ‘uh-na’ and ‘tessssssssa’….his sisters names!
  • While running through the apartment (his primary self-stimulatory behavior), he yelled ‘run’!  He was so excited…and so was I!
  • Evan reached up to give Jesse a hug at bedtime. Then wrapped his arms around his neck and squeezed.  Evan requests a lot of hugs and receives them, but ‘giving’ hugs is a little more rare. So special…
  • Evan moved up from the nursery to the preschool room at church! The big boy definitely enjoyed the new toys and was a pleasant addition to the classroom.
  • Evan started school. By the second day, he walked right on the bus with no problems. He seems to be enjoying his days and napping a little better in the afternoons. I think they may be wearing him out a little!

Overall, there have been quite a few words at random this month. Here are some goals that I am going to work for this month:

  • Use a PECS card for the school bus to show Evan where we are going and help him to learn that word. Figure out the sign language for it too and start using it!
  • Evan tends to wander during meal and snack times. I really want to nip this particular behavior.  At dinner, we will be continually sitting him back in his seat and prompting him to say or sing ‘all done’ when finished.
  • Gather and read resources regarding potty training children with autism. Evan has been tugging at his diaper, because it is uncomfortable. I feel this may be a sign to start moving in that direction.
  • I have been working on my ‘alone time’.  Each morning for several weeks, I have been able to set time aside to read my Bible and a small devotional. I really want to add exercise into this routine, because I want to be healthier. I know it seems like this goal doesn’t relate to Evan, but I am learning that I need some ‘me-time’.  Especially, since most of my time is ‘kid time’ or ‘work time’ or a myriad of other responsabilities!

If you think of us and are praying, then I’ve got a request. I’ve been feeling that God wants us to pray that our kids, and especially Evan, that they are fertile soil. The parable of the sower is typically meant to signify the way that different people respond to the gospel – we can be rocky soil, weedy soil or fertile soil.  I just really feel called to pray that my kids will be fertile soil for the right things – that the things we are trying to teach them and working towards will flourish and grow and take root in their hearts!

 

 

 

 

For the Love of PECS

August 1, 2011

Over a year ago, our speech therapist arrived with a picture board of her different floortime activities.  For months she persisted in helping Evan connect the picture board with the actual activities.  Many days he cried when she would use hand-over-hand assistance to help him reach for the pictures.  Then, in September of last year, he started choosing between two pictures, then three.  Every now and then, he would Evan grab the picture and hand it to her.  To be honest, I wondered what on earth she was doing.  I thought she was supposed to teach him to talk!

That was before I knew or understood that Evan would be diagnosed with Autism.  I could tell by the way she systematically did things and her professionalism that I should trust her.   And so I did trust her, which was one of my better decisions as a mom.

By Christmas of that year, Evan would come and grab our hands.  He would pull us to the kitchen if he wanted to eat. He would hand us his sippy cup.  He no longer cried for the things he wanted – he communicated.  He did not ‘talk’, but he communicated.

Instinctively, infants cry when they need something.  As they grow older, they instinctively begin to imitate the sounds that adults make. One day, when mommy is being goofy and saying ‘mommy’ over and over again.  The baby says it too.  Of course, mommy gushes at this point and rewards the baby with a hug, smile and other such delights.  Soon the baby knows that if she says ‘mommy’, then her mommy will come.  And so the process of communication has been cemented for the baby, who now understands the value of those noises everyone is making.

My little boy, and many children with autism, did not progress this way.  I remember thinking when he was six months old that he didn’t ‘coo’ or ‘ga-ga’ at all.  However, I shrugged it off.  At one year, he made some noises and said ‘uh-oh’.  I thought speech was coming.  At eighteen months, he had learned the word ‘no’.  With no changes at 20 months, we were advised to begin speech therapy.  Some people looked at us strangely.  I’m sure they thought he would grow out of it.  After all, in the 70’s and 80’s it was not abnormal for a child to begin talking around age three.  What my friends and I did not understand is that the problem was not speech delay.  It was communication delay.  Thankfully, our speech therapist understood this and worked endlessly to establish the pattern of communication for Evan.

The technique she used is called the Picture Exchange Communication System or PECS.  It was developed in the 80’s to help children with autism and other developmental disorders learn to communicate. It was designed to be accessible to everyone.  In fact, it is the least expensive intervention system I have come across!!!  (Please applaud the person who came up with that idea).

The official PECS website describes it this way:

“PECS begins by teaching an individual to give a picture of a desired item to a ‘communicative partner’, who immediately honors the exchange as a request. The system goes on to teach discrimination of pictures and how to put them together in sentences.”

PECS is a very effective tool for therapists and others who are involved in one-on-one interactions.  As a parent of three children, I have found that its implementation can be difficult.  I remember posting frequently used pictures, such as snacks and sippy cups, on our refrigerator for Evan to use. Twenty minutes later I came around the corner with some laundry and the pictures were scattered across our living room. The dog was eating one picture, Arianna was coloring another and Tessa was trying to put them in her toy teapot. Evan, the one who should be using them, was at the kitchen table rolling trains back in forth at his eye level. Sighing, I collected the package and resigned myself to finding some other method of use.

My next route was fairly effective – one picture at a time. The therapist took a picture of our van so that every time we were getting ready to go, we could show Evan with the picture. This worked really well.  My only advice is make thirty-thousand copies of that picture, because you will leave it in the van or in your purse at least that many times!

My most recent effort has been a picture schedule and chore board.  This is what it will look like once it is fully implemented. 

However, it is still one picture at a time – starting with breakfast for a couple weeks, then we will add in getting dressed.  Perhaps in a year we will have the whole thing down!  I’ll keep you posted, for sure!

Terrifically excited to announce that Jesse was offered a job Friday evening!  To the man who has persevered through so much – You Deserve This!  Congratulations!!!

Along with this wonderful announcement, there are several real implications for our kiddos.  The first is that Evan will be able to have ABA therapy!  The second is that the girls will be going to daycare 2-3 days a week.  Big changes are coming in our house!

So what is ABA therapy?  Well, a good friend of mine from college is actually an ABA therapist.  She also has a blog.  To read one of the best descriptions about ABA therapy that I have found – go here.

One of the wonderful things about living in Indianapolis is that there are a multitude of ABA options available.  Here are a few that we are considering:

 Lots of excellent opportunites!  I am blessed to have so many choices.  Please pray for us as we make this decision!  And you have any thoughts or recommendations, I’d love to hear them!

GFCFSF: Getting Started

February 15, 2011

Once you have decided to go with the GFCFSF diet, then your next questions are likely, “How do I do this?” and “When should I do this?”  There are tons of variables and no one can really tell you what will work best for your family.  However, I’d like to share, from one mom to another, what led me to my decisions regarding the diet.  Additionally, I will share things that I thought could have gone better, what worked (and what didn’t) and how my kids responded.

When should I begin?

The number one variable to consider here is economics, in my opinion.  I knew I would be replacing most everything in our cupboards and refrigerator.  However, I was not prepared for the cost of simple things like GFCFSF ranch (which is almost non-existant), ketchup and mustard.  Additionally, I was prepared that we would be spending more, but I had not realized that start-up would rock the boat so much.  Previously, I had been spending about $80/week on groceries.  My first grocery bill on GFCFSF was $150 and I think it lasted all of 3-4 days.  I know with time that I will make things more affordable for my family by making many things from scratch, but I can only try so many recipes in one week.  Additionally, purchasing new and replacement ingredients for our pantry (rice flour, xantham gum, baking soda in the aluminum free container) every week drives the bill up. 

The second thing I considered was whether I should see a DAN! practitioner first.  DAN! is the Autism Research Institute’s response to biomedical intervention to cure autism.   It stands for, my favorite phrase, defeat autism now.  I believe this year they are changing the name.  You can view more information here.  Biomedical intervention consists of things such as the GFCFSF diet, vaccination considerations, chelation, etc.  Many of these therapies and treatments are not widely accepted in the medical community, because there is a lack of proven research.  By proven, we mean controlled studies of thousands of people.  However, there are doctors out there who recognize the value of biomedical intervention and you probably want to get involved with one.  One of the things they can do is test your child for gluten, casein and tons of other allergies/sensitivities.  This test may mean that you will be eliminating more than just gluten, casein and soy.  If you are looking to do all of this at once or want more guidence in implementing the diet, then waiting to see a DAN! practitioner is best.   I decided initially to go this route.  However, when I called for the appointment there were no openings for four months.  When I heard this, I decided just to dive in.  I wanted to see change before then.

Evan’s Escapades

January 3, 2011

Today marked the 24 hour time mark for the GFCFSF diet.  Evan seems to like most of the food, except the rice milk.  I am thinking of taking the unopened cartons back to the store and purchasing some Coconut and Hemp milk.  There are some good recommendations for those in the GFCF Kids yahoo group.  This morning I noted increased eye contact and jargon.  He also had more purposeful play.  For instance, he strung three trains together and moved them along the rails.  He seemed to be really enjoying himself!  Then, when the occupational therapist arrived, he didn’t cry and seemed ‘ready’ for therapy.  Usually, there is a large transition between play and therapy  that consists of crying and hugging until Evan is soothed.  It has been very rocky!  This is, word-for-word, how the therapist described today’s session:

“Evan did not cry today!  Was able to begin therapy session without tears.  Seen in family living area.  Evan appropriately answered ‘no’ to therapists questions 2 times.  He said ‘yes’ to rolling on ball, being ‘squished’ by ball 2x near end of session.  He gave eye contact more frequently on lap/near therapist…”

I hope this was not some fluke and the GFCFSF diet is clearing the fog around Evan so he can enjoy life!