This may be obvious, but I am disappointed that my son has autism.  I think I have been in denial. Gung-ho, take on the world, face in a grimace – denial.  Not in denial that he has autism – he doesn’t talk, folks!  In denial that I am disappointed.

Most of my life, I have felt like a disappointment to my parents.  Creative and Artistic = black sheep. Intelligent and Not-Ever-Concerned-About-School = black sheep. No college degree = black sheep.  They don’t read this (gasp! Surprise!), so I feel comfortable saying that. My siblings do and I’m fairly certain they might echo my sentiments. Don’t get my wrong.

I have awesome parents.

Awesome parents with high expectations. I’m fairly certain that my own insecurity plays a large role in my ‘black sheep’ feelings. I’m also comfortable saying that.

All of this being said, I have an overwhelming fear of making my children feel that they are disappointments. Enter ‘the truth’ at stage left…

Fear is stupid and, most often, irrational. In One, Extremely Powerful and Wise Book, it is written that ‘perfect love casts out fear’. 

the Good News is that I have known Perfect Love.

Jesus, Cross, Tomb.

So back to disappointment…

Its been difficult for me to admit that I am disappointed about autism, because I was worried that it might be confused with being disappointed in Evan. So NOT THE CASE.

Evan is magnificent. He is bold, strong and courageous. He is also gentle in spirit. I could never be disappointed in him, because God made him.

Yes, God. *romantic sigh*

A few weeks ago, I was feeling discouraged about Evan and his progress. I went forward for some prayer and the woman who prayed for me just cut to the chase. She started praying for me to give my disappointment to God. Then, she hugged me and we cried together and it was very Ya-Ya Sisterhood.  While we were hugging, I just felt peace wash over me and I gave my disappointment to God.

Only to have God tell me something…

The flip side of disappointment is Appointment.

Appointment (n.) A fixed meeting or purpose; The act of appointing or designating.

Appointed (adj.) Predetermined, arranged; Provided with what is necessary.

So Evan and I, our family. Appointed. 

Insert smiley face emoticon…

To be seperated from your appointment is the essence of satan’s desire. To be connected with your appointment is the essence of God’s desire.

Sometimes I wonder what we are appointed for exactly. And then I think of God’s desire.  He made us an appointment with autism – a date with destiny.  Satan is doing everything to keep us from meeting that appointment.

When I say it like that, it plays out like a movie in my head. Of the ‘Terminator’ variety.  We are racing against time and the world to meet our ‘date with destiny’ – live or die. Queue dramatic, bass music: duh, duh, duh…  Who will win?

“We know that all things work together for the good of those who love God—those whom he has called according to his plan. This is true because he already knew his people and had already appointed them to have the same form as the image of his Son. Therefore, his Son is the firstborn among many children. He also called those whom he had already appointed. He approved of those whom he had called, and he gave glory to those whom he had approved of.

What can we say about all of this? If God is for us, who can be against us?…What will separate us from the love Christ has for us? Can trouble, distress, persecution, hunger, nakedness, danger, or violent death separate us from his love?…

The one who loves us gives us an overwhelming victory in all these difficulties. I am convinced that nothing can ever separate us from God’s love which Christ Jesus our Lord shows us.We can’t be separated by death or life, by angels or rulers, by anything in the present or anything in the future, by forces or powers in the world above or in the world below, or by anything else in creation.

We Win!

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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!

 

 

 

 

This Dream

August 25, 2011

I have this dream. It involves Jesse and I sitting on our couch in the morning. He’s sipping coffee and we are talking about the upcoming things in our day. Then, we hear ‘the sounds’ emanating from upstairs. And soon, six sets of little feet come pitter-pattering down the stairs. We help them grab their bowls of cereal and glasses of milk.  As we all converge around the living area, Jesse prays and reads something from the Bible.

That’s it. That’s my dream. Its simple. Nothing fancy. It has been my dream since I met him – Jesse. I always wanted a lot of kids and when he said 6 sounded fun – well, we were meant for each other. We got married and started building our lives together.

We bought a huge house and got pregnant. Our little lady arrived on the scene.

Around this time, we fell in love with the youth group at our church.  We felt God calling us.  At the same time, Jesse discovered a calling to return to college and study graphic design.  He started a work from home job and went back to school. I started working full-time.  We became the youth ministers at our church and we just felt so excited about the things God was bringing into our lives.  Soon, this little dude came too.  And we were very excited.

Jesse’s work-from-home job became demanding – they didn’t even give him 2 days off for Evan’s birth.  I had a c-section and had limitations – I couldn’t carry anything heavier than the baby.  This made it hard to care for our little ones.  In the end, Jesse had to leave that job.  We moved out of our gargantuan house and into a two bedroom apartment.  Six months later, we were officially in foreclosure.  I started working night shift. I got pregnant. We stepped down from ministry.  The bill tally was $1000 more than we made each month. Peanut butter and jelly was our daily staple.  It began to feel a little less ‘exciting’. 

In my third month of pregnancy, I developed kidney stones.  In my fifth month, overwhelmed by the circumstances around me, I became depressed and suicidal.   Our apartment lease ended and my parents offered to let us live with them. I think ‘very worried’ hardly described my mom’s feelings.

We moved in and welcomed some Good News.

At Evan’s 18-month check-up, the doctor was concerned about his lack of speech.  Soon we sat in a neurologist’s office and listened to his remarks that we were likely looking at ‘autism spectrum disorder’. 

In these moments, I felt so far from the patter of six little feet and Bible readings over coffee. Some days I still feel pretty far from it.  I wonder if it is even worth considering anymore. 

At the beginning of this year, a good friend of our’s prayed for us.  He told us that God was going to restore us this year.  I remember feeling hopeful and doubtful, all at the same time. 

Saturday was Jesse and I’s sixth anniversary.  Unfortunately, with my new job, I had not been able to request it off. However, that morning I received a call saying that I could have the day of.  Lying in bed, I began to think about the last year and the gratitude just overwhelmed me. 

We paid off over $30,000 in debt, when I only made $21,000 the entire year. We moved out on our own. Jesse got a job – a great one. I got a job – a great one, with great hours.  I’m starting to feel restored.  This morning, I had this song in my head:

It’s been a long, hard road these last few years. Yet, it seems we are finally rounding the bend.  In the end, all of the struggle, the pain – it led us straight to Him. We could not have survived it all without Jesus. It sounds hokey and cliche, but He truly has been our Savior. 

Which brings me to Evan…

I just hope this road leads him straight to You, Jesus.

Some Thanksgiving

August 4, 2011

All I have to say is that things are looking up! In the last month, we have had so many blessings! Here are just a few:

  • I got a new job on the mother/baby unit, which is a much happier place than the ER!  I miss the hustle and bustle of the ER, but I know God has brought me to this new unit for a reason.
  • Jesse got a job! When they offered him the position, they actually offered more than was originally budgeted for the position – because they liked him so  much!
  • My sister-in-law has watched the kids for a few weeks until the first paychecks arrive!  GOD BLESS HER!
  • We found a wonderful lady, experienced with children who have autism, to watch the girls permanently and then Evan as needed. She even helped us fill our the Autism Waiver for medicaid!
  • With both of us working, we quickly realized that we needed another car. Of course, we also quickly realized that we couldn’t afford one for at least a few months. A week later, my mother broke her arm (which is definitely NOT a blessing). However, it just so happened that we could use her car for about a month. Then, my brother offered to sell his nice, newer car to her inexpensively. This, in turn, allowed her to sell us her old vehicle at a price that we can afford. If we had bought a car at that price anywhere else it would be completely unreliable. However, we know this vehicles history – it has a brand new engine and clutch and is in great shape!
  • Lastly, I received a call from the benefits department at St. Vincent, where I work. They will begin covering ABA therapy in 2012. This is a huge financial blessing for us! 

In January, a good friend of ours prayed for us after church. He told us that God was going to restore us. I remember being so encouraged and at the same time wondering what it would be like to feel ‘blessed’. I always new that I was blessed. I have an incredible family AND an incredible God. Yet, things have been so tough for so long…I had forgotten what blessing feels like.

It feels good! *Smile*

Yet, I would never trade the last several years in for anything, because now I enjoy the presence of God. I love Him so much and He has been with me every step of the way. I guess I know that even if things weren’t looking up – He and I would be in the same place – together.

And that is the greatest blessing of all.

Psalm 16 

1Keep me safe, O God,
      for I have come to you for refuge.

 2 I said to the Lord, “You are my Master!
      Every good thing I have comes from you.”
 3 The godly people in the land
      are my true heroes!
      I take pleasure in them!
 4 Troubles multiply for those who chase after other gods…

 5 Lord, you alone are my inheritance, my cup of blessing.
      You guard all that is mine.
 6 The land you have given me is a pleasant land.
      What a wonderful inheritance!

 7 I will bless the Lord who guides me;
      even at night my heart instructs me.
 8 I know the Lord is always with me.
      I will not be shaken, for he is right beside me.

 9 No wonder my heart is glad, and I rejoice.
      My body rests in safety.
 10 For you will not leave my soul…
 11 You will show me the way of life,
      granting me the joy of your presence
      and the pleasures of living with you forever.

 

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!