Times they are a changing

It's now been a week since our newest family member was born, Aiden. He is a big fellow weighing 9 lb. 12 oz. Suffice it to say, Andrew can sense a lot of new changes. While he actually seems indifferent to Aiden's presence, it seems like playing with Audrey and sometimes on his own can upset him more than it used to.

Our ABA therapist explained that Sara being in the hospital for four days as well as having to go in Saturday night for Aiden to receive some photo therapy to treat his slight case of Jaundice is definitely something Andrew observed.

I have felt like there has been no progress. When I expressed my concern with his ABA therapist, she pointed out how in the beginning, Andrew would get upset over her taking a toy. Today, he typically will ask for the toy back and think nothing of it. We have in fact made huge progress. Andrew speaks in full sentences, being able to say, "I want crackers" or "I want to watch DVD". It's fantastic.

It's easy to get hung up on negatives. We asked her what we should do when Andrew has a fit and starts throwing toys. We need to verbally remind him to not do that. We do the arm squeezing to help him calm down. And then we can ask him to fetch what he threw and bring it back. All different types of redirection. It feels tempting to put him in timeout like we would with Audrey, but I knew that was not the right course of action for Andrew.

She explained that as he progresses, there will be many steps forward as well as occasional regressions. A sort of rubber band type thing. But the progress forward has been terrific.

In fact, I was impressed how he and Audrey played last night with his new train set. Afterwards, Andrew took it all apart and put it away in it's box.

Sibling Rivalry

It's been a while since we posted.  Andrew continues to do well and we get wonderful feedback from his therapists about his progress.  We are seeing more spontaneous language and even singing songs spontaneously!  His favorite songs are "The Clean Up Song", "Itsy Bitsy Spider", and "Twinkle, Twinkle Little Star".  He loves to sing and do any hand motions we can come up with.  SUCH an improvement over where we were a few short weeks ago.

Even now as I type, he is with his Behavioral Therapist (ABA).  They are doing an animal puzzle and she is asking him to name the animal and make its sound. This is something he couldn't have done two weeks ago, but now does with no trouble.  Truly, he is responding well to therapy and it is such a blessing to this momma's heart.

One of the big things his ABA Therapist has started working on is his interactions with his sister, Audrey.  She is a MAJOR trigger for him.  The therapist has worked with him in the past through a situation where she (the therapist) will take a toy that he wants.  She helps him through his fit to calm down and then ask for the toy.  He has done well adjusting to that.  But when Audrey takes a toy he wants, it is an explosion of tears and fussiness.  It takes a lot of work to calm him down and get him to request the toy from Audrey.  (Never-mind that she doesn't understand that she needs to hand it over when he asks "please".)

Though this season of therapy is hard for me (I hate hearing my baby boy cry so and despise seeing my children at odds during therapy), it has started to change their sibling relationship.  They are interacting more even outside of therapy and Audrey will actually acknowledge Andrew's existence to her own Speech Therapist.  (Before whenever asked about Andrew/brother, she would simply say "no".)

So, all in all, things are going well.  God continues to be faithful during this season to guide us and give us that extra measure of patience and wisdom with our children.  He is so good!

Looking For Progress

I've been thinking a lot today about progress.  I know that progress with Andrew will be slower than I would like.  But when I think about Andrew when we started and Andrew now, I can begin to celebrate the progress that he has made.

Andrew pays more attention to us, to our faces and our expressions...this is sooo important for a child with autism as this is how "normal" children learn how to react to and interact with others.  Andrew is repeating more and his speech is much clearer.  There are moments when he will speak spontaneously and those instances are becoming more frequent.  He still gets frustrated and overwhelmed and throws fits (what toddler doesn't?), but we are better equipped to calm him down now that we know to gently squeeze on his arms.  He is more consistent in requesting "more please" (most regarding his sippy cup, but even that is a victory).

We've started working with pictures.  Putting pictures on the fridge so that he can bring us the picture or point to the picture of what he wants.  He is not catching on to this as quickly.

Overall, his therapists are pleased with how receptive he is, how easy he is to work with, and how quickly he picks things up.

We've had some isolated incidences (which I doubted I would ever see), where he and his sister are playing together.  This warms my momma's heart greatly.

As we get in the swing of therapy and our now hectic schedule, we are grieving the loss of the life we used to lead.  It was still hectic with two young ones and one on the way, but it was relaxed and laid back compared to what life is like now.  Greg and I are also beginning to grasp the basics of therapy and are attempting to be more intentional with Andrew's off-therapy play time about incorporating some of the things his therapists do to engage and teach him.

So, in all of this, I've been easily overwhelmed, sometimes discouraged, and quick to tire (the progressing pregnancy probably plays a big role in that).  But God is SO faithful to find ways to encourage me in the midst of the craziness.  Just today, he brought me to a verse:  Galatians 6:9 which says "Let us not lose heart in doing good, for in due time we will reap if we do not grow weary".

As I read that, God impressed upon me that this applies to our challenges with Andrew, and with Audrey for that matter.  As a mom, my life is focused on my children with limited interaction with others it the outside world.  So, I know my kids are my calling, my mission field.  This promise is for me in our day-to-day struggles.  I am sowing seeds that are often watered by my tears (of frustration and joy).  I am cultivating these two precious lives and souls.  So, be it Andrew's therapy or Audrey pushing my buttons, I must not lose heart in doing what I am called to do.  If I continue to tend to these small sprouts, as I believe God and take Him at His word, I know I will reap as I have sown.

Discovering new things and learning to adapt

Between yesterday and today, we have made several observations, both on our own, and from Andrew's ABA therapist.

We started to spot that Andrew was uninterested in drinking from his dark blue sippy cup. It could very well be because he either can't see what's in there, or he has come to associate that cup with having water, like his blue Thomas straw cup.

When we shifted to putting his milk into his lighter, yellow cup, he immediately wanted to drink from that. We will have to test that by putting some Pediasure in one later today and seeing how that goes.

Andrew's ABA therapist observed something else today: when he gets upset, she started squeezing on his hands and arms and it allowed him to calm down much quicker. She went on to test that response several times, and it appears to be a means to soothe him. Next step will be to continue testing it, and if it turns out to work, teach him to squeeze his own hands as a self soothing activity. She said this can be tied to some of his own sensitivity issues and finding a means to contain this will be very helpful as he matures. She said that there is a whole market of body socks, compression vests, and other things like that which are designed to help highly sensitive children calm down. We'll have to think about that if this approach isn't enough.

Another behavior to work on is pairing. This is when we ask him to take a sip of Pediasure in order to get a yummy goldfish cracker. We'll experiment with that as well, although the cup issue might be solved in a different way.

All in all, this is the type of exploration that we are undergoing as his various therapists get to know him better and can fine tune things for him.

Busy day!

Tired Andrew after a full day

This morning, Andrew had a 2-hour session with Kathyrn, his ABA therapist. On the surface, it looks like they are just playing. But when you learn a little bit, you can see that Kathryn is engaging him in what Andrew wants to do, but she steers him into new angles, new ideas, and new types of spontaneous behavior. Towards the end, he was playing an interactive game on her iPad. He wasn't quite getting the concept of drag-and-drop, but I'm sure he'll get it soon enough.

Sara had "the day off". She had been pulling double duty last week while I attended my company technical conference in California. She earned a day at the spa. This made for fun time management. Pay it no mind that I still got a lot of work done!

Later today, Andrew had his first speech therapy session followed by occupational therapy. When his speech therapist came out to give me her report, Andrew was upset. It appeared like he didn't want to stop playing. It was a bit of a blur. He developed an initial rapport with his speech therapist and was introduced to several new sensational things with his occupational therapist. I have more to learn about this stuff.

He didn't get home and able to nap until around 3:00pm. Suffice it say, he was cranky by then, and fought me carrying him to his crib, but it didn't take long before he was out.

Here is what is so amazing. He is getting all types of help, but doesn't even know it. To him, it's all play. At dinner time, he was running around, and when we would say certain words, Andrew repeated one of them while pointing his index finger at his mouth. We quickly deduced that this was the gesture his speech therapist used. It is clear that all these things are sinking in and giving him what he needs.

In all this hub bub, there is something I never realized until Sara and I chatted with a member of our Sunday school class who happens to be an ABA therapist. Andrew might very well come out ahead of his peers. I was praying that he would keep his head above water and "catch up". I never realized this might be possible.

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.