Keeping my priorities straight

I have spent the past week at a conference. I know it has been a tough week for Sara. She has not only has to pull double duty in taking care of the kids, but she also had to suddenly increase the number is various therapy sessions regarding Andrew's occupational, ABA, and speech therapies.

I felt really sad when I learned this evening that I have been letting myself get too wrapped up in things here. While we caught up on the phone tonight, Sara has to finally share something I didn't want to hear. Every time we have called, I have been too eager to share what I was up to, and made her feel as of she had to wait her turn to tell me about her and the kids. 

As husband and father I need to focus on supporting my wife especially when she has had such a challenging week. I feel guilty that my first words were never, "How are you? How are the kids?" I had a chance on the flight over here to read more of one of our autism books, but I didn't take advantage of the opportunity. 

I regret my selfish actions and hope Incan rise back up to be a truly loving father and husband. 

Small Victories

This week has been a whirlwind of activity for us.  Greg has been out-of-town all week and we've had a full schedule of therapy appointments and evaluations.

Andrew's therapy team is finally taking shape.  We added two members to the team on Wednesday as he was evaluated for (and recommended to pursue) Speech Therapy and Occupational Therapy.  He is, as we knew, quite delayed in speech - both in receptive and communicative language.  They will work with him to improve both his speech and his tolerance to a greater variety of foods.  The Speech Therapist did comment that he is great at repeating things, which is the basis of building language.  The Occupational Therapist was not overly concerned as his gross motor skills are nearly where they need to be, but his fine motor skills are at the level of a 21-22 month old.  Both therapists stated that he was easy to work with and very compliant, reassuring me that this would be of great benefit to him and us in his therapy.

All in all it was a rocky day for me.  Even though we knew he was delayed because of his autism, it's never easy to hear it.  But it did my mommy heart some good to be told over and over what a delightful boy he is and that he is going to be fun to work with because of his unique qualities (very laid back and easy going).

Thursday I went to pick him up from his preschool program to hear from his teacher that he'd had a bad day.  She said that he was "very sensitive".  It was not good to hear that, but I am thankful that this is not the norm for him, that he mostly has good days at school and even has been participating in class activities.

I was pleased to meet the "final" member of the team this morning, the ABA Therapist who will actually be doing his therapy three days a week for two hours each session.  She was very impressed with how quickly Andrew picks things up and how easy he was to work with.  They played with toys and books while she was here.  She would point out objects in the books and identify emotions that were displayed on the character's faces (happy, sad, etc).  We were shocked and pleased to hear Andrew spontaneously (not repeating her) point out a character as "happy" and also point out and say "moon" spontaneously.  It may seem small, but it was huge for me.  Andrew does a lot of repeating, but we RARELY hear ANY spontaneous language and he's never pointed to something in a book before an named it.

So, we are celebrating the small victories today, with every hope and prayer that the steps forward, though small, will become a consistent part of our life.  I know that there will be more small victories to celebrate and I look forward to looking for them daily.

Two Steps Forward and One Step Back

We are well into Developmental Therapy and, so far, Andrew is very receptive to his therapist, Megen, and to the therapy.  She basically does structured play with him.  They continue to work puzzles, working on the signs "more" "please" and Andrew continues to use that two word phrase to request more milk.  Megen also works with him to identify the animals and other objects in the puzzles and the sounds they make.

We ended up taking Andrew to see his peditrician last week due to his diet.  He's always been a picky eater (which is common for children with autism....they are sensitive to certain textures), but recently it seemed there was nothing solid he would eat (we have added Pediasure to his diet because of his nutritional short comings).  His doctor said that occupational and speech therapy will help with that, but until that time, he recommended we start a medication that will increase his appetite and, hopefully, encourage him to eat more things.  His diet now consists of:  yogurt, dry cereal, and goldfish crackers.

I was very encouraged on Monday when we went for his sister's speech therapy.  There was a young girl in the waiting room that took a liking to him.  He actually interacted with her and played a game with the chairs.  He hardly ever interacts with other children and NEVER with children he doesn't know.  So, it was very encouraging.

But on Monday evening, we had the biggest fit Andrew has ever thrown.  It broke my heart.  He absolutely wanted something and I could not for the life of me figure out what.  Then he got frustrated at his inability to communicate with me and the fit went on and on.  I could see what the ABA Therapist had described to us as the difference between a fit thrown by a "normal" toddler versus a toddler with autism.  It was awful.

All in all, I believe that Andrew is making progress.  We're adding more therapy and more evaluations this week and I'm hoping we can keep a good balance in our lives.

As for me, I've been struggling a lot with fear.  This is an old struggle for me.  And one I hoped I had put behind me.  These past weeks, it has reared it's ugly head again...fear of what living with autism could look like, fear that something will happen to my children or to my husband as he travels this week.  Thankfully, I serve a Sovereign God who knew this struggle was coming back around.  This week in the bible study I'm working through, was a focus on Psalm 121 which speaks of how God is my protector and watches over my life.  It was especially reassuring to me and I know the Spirit spoke to me through those ancient words.  I continue to quote this Psalm to myself when I begin to fear.  And He has been faithful to still my fears.

Meeting with ABA Therapist

Today we met with Andrew's ABA Therapist (Applied Behavior Analysis).  She asked us some questions to help her zero in on what areas needed to be targeted.  Then we had a chance to ask questions.  We merely wanted to know what to expect a therapy session to look like (which she won't know until they get a chance to work with Andrew) and how soon it will start (we are determined to get the ball rolling).  This is where we left things:  she needs to check with our insurance to ask how much therapy they cover and we will get a call this week to set up his therapy for next week.  We can expect 2-5 sessions a week (depending on insurance coverage).

We are starting to feel overwhelmed with how our schedule is shaping up.  Our daughter, Audrey, was evaluated for Speech Therapy today and we found out that she qualifies for assistance.  So, she will have Speech Therapy twice a week.  Andrew will hopefully start Speech Therapy soon at the same rate (twice a week).  And he already has Developmental Therapy once a week.  Then we will have to add 2-5 sessions of ABA Therapy starting (hopefully) next week.  This is all in addition to him attending preschool 2 days a week and my activities (a weekly bible study and MOPS twice a month.  We're feeling like downtime will be hard to come by.

We continue to expand our circle of friends and family who know about Andrew's challenges.  With that comes increased support.  We have been strongly encouraged to find an Autism Support Group, which is at the top of my to-do list (after the piling up laundry and cluttered bedrooms).

In the midst of all this craziness, I know that God is inviting us to something greater...not a life full of schedules, therapy, and housework; but a season of greater reliance on Him.  I know the days will be longer and more tiresome with our adding schedule challenges.  This is a calling to lean ever more on His strength and to follow His lead.

Andrew's first developmental therapy session

Andrew had his first therapy session with his developmental therapist this past Monday. Megan played with him for about an hour, focusing on teaching him to sign "more please", a two-word combination. We had gotten Andrew to repeat things in the past, but he didn't seem to make multi-word combinations.

Megan played a puzzle game with him, which Andrew responded well to. She took all the pieces of the puzzle, and hid them. Then she made Andrew sign "more please" to get a piece. He didn't sign that combination many times. But she kept reinforcing the combination before handing him a piece. They played it several times. Then they switched puzzles and repeated. And again. It seemed like a very small amount of progress was made.

But I had already read that we need to repeat the practices we observe in his therapies, so we started playing that game several times this past week. And then an amazing thing happened. Today we played it again, and he was starting to sign "more please". Not every time. But more than his first session.

Sara began playing the game with him, and his big sister, Audrey came over to me and wanted to play the same game. She is four and can speak and sign, and loved playing the game. First she would do the signs. Then she said it was my turn, and asked me to do the signs.

This afternoon we all went over to watch a football game. And towards the end of the game, Andrew came over to me with his empty sippy cup and signed "more please" with no prompting. I cheered, "Yeah Andrew!" That put a smile on my face.

The Diagnosis

It seems like a lifetime ago that our pediatrician was saying to us that there was a possibility that our sweet 2 year old, Andrew, might be autistic.  It seemed unreal and I didn't want to believe it was possible, so I just didn't.  But we readily agreed to have him tested to ease our doctor's mind. 

The first evaluation we had was with the Tennessee Early Intervention Services (TEIS).  They nailed down his developmental delay and speech delay, but didn't really see anything that pointed to autism.  (Sigh of relief.)

It was a couple of months later when we received an unexpected call from the Vanderbilt Children's Development Center telling us Andrew was on their wait list to be tested by one of their psychologists.  Okay, so this is the autism evaluation.  After solving a little hiccup with insurance (aren't those fun?), we prepared ourselves for the 4 hour evaluation.

The test itself seemed pretty comprehensive.  They asked me a LOT of questions and played with Andrew in both structured and unstructured activities.  I just knew they were going to confirm TEIS's findings of some developmental delays and a speech delay.  I miss that ignorance.

After all was said and done, the diagnosis was Autism Spectrum Disorder.  No one was more shocked than I was.  I mean, I knew he had some issues, but nothing I had read in my (admittedly limited) research on signs of autism seemed to fit Andrew.

So right there, in front of them (the evaluating team members), I started to cry.  And cry and cry and cry.  I didn't stop crying for an hour.  I cried when I told my husband on the phone while we made our way home from Vanderbilt.  I cried when I told my parents.  I cried as I looked at my sweet boy in the back seat who had, in my opinion, been given a life sentence.

Over the next few days, we grieved.  We grieved the life we had hoped for Andrew and the inability to use the word "perfect" in the same sentence with "Andrew".  And I was so angry with God and the choice He had made for my son.  So angry that, even a week and a half later, I can't bring myself to pray.

Over the next week, we dove into the information that Vanderbilt had provided us.  And, the more we read, the more overwhelmed we became.  There seemed to be two questions pop up for every question that was answered.  And neither of us wanted to trust the internet to give us information.

I know Andrew is the same boy that he was before the diagnosis, that we now simply have a name for what he's struggling with.  It just takes a little while for that information to travel from my head to my heart.  And we have both struggled with the inability to call him "our perfect little boy" anymore. 

Once I was able to get my head above water, I started informing my closest friends.  It was so touching the amount of love, support, and sympathy we received.  One of my dear, sweet friends and sisters in Christ shared a truth with me that has really been a turning point for me in my own journey to process the diagnosis.  She first extended her sympathies and assured me we were in her thoughts and prayers.  Then she said, "Praise Jesus that Andrew was fearfully and wonderfully made.  And while this diagnosis is a shock to you all, it is not a shock to the One Who formed him in your womb." 

At first I thought it was odd that we should praise Him at all, but my heart softened to this truth and I began to see light in the midst of my grief.  Andrew is fearfully and wonderfully made.  God promises this.  God formed him in my womb.  And for whatever reason, this was always His plan for us and for Andrew.  The truth is that He will lead us and equip us on this uncertain road with all of it's ups and downs, twists and turns.  And, even more than that, I can begin to say that Andrew is perfect...because God made him and he is a miracle.

We wanted to start this blog to keep our friends in the loop and to chronicle Andrew's, and our whole family's, journey.  I also hope that we can be transparent as we walk through this, so that anyone who finds this blog after their own child is diagnosed can know that they are not alone.