Tuesday, July 9, 2013

It is all Sensory

My son Liam loves to jump.  In fact, he learned to jump with two feet off the ground when he was about 18 months old.  By the time he was two he was jumping on everything, especially our couch.  There was just no stopping him. He was hitting his milestones at or ahead of schedule and we didn't worry about him.  Around his second birthday I started to notice he hit a wall with his speech.  He was not stringing words together, he was not able to communicate what he wanted and as a result he was increasingly getting frustrated and melting down.  Both of his brothers were already receiving speech therapy for an unspecified delay through the Early Intervention Program.  After discussing my concerns with our speech therapist she agreed that it was time to put the referral in and at 30 months we had him evaluated for potential speech delays.
Jake, Liam and Caleb
The evaluations confirmed that Liam’s speech delay was significant enough to qualify him for speech therapy twice a week for 45 minutes.  In addition, he qualified to receive special instruction services once a week.  As was the case with his brother Jake, the speech delay resulted in a delay in social and play skills.  The special instructor was assigned with the task of working with Liam to improve on those areas in conjunction with his speech therapist.  For me this was not new.  Caleb had been receiving speech since he was 15 months old and Jake soon followed around 18 months old.  In addition to receiving speech therapy twice a week, Jake also received occupational therapy, physical therapy and special instruction twice a week.  Needless to say having therapists come to my house to work with my kids was a regular occurrence.   

By the beginning of May 2012 (just over a year ago) Liam started to receive speech and special instruction.  I assumed he was going to be like the other two.  Typical delays associated with being premature and just needing a little bit of assistance to catch up with peers.  Liam has always needed a certain comfort level with people so it worked to my benefit that he already knew both the speech therapist and special instructor from working with his brothers.  The more time Liam and Jake’s special instructor spent with us, the more she noticed Liam’s need to jump.  She mentioned to me that Liam may not just be jumping because he enjoyed it, rather Liam jumped because he got something out of it.  The jumping gave him a sensation he craved or needed to function. 

I admittedly blew this off at first.  It seemed to me Liam was being an active little boy and enjoyed jumping, running, kicking the soccer ball.  These were the things he excelled at.  However, as time went on, what Liam’s special instructor was telling me was making more sense.  I remembered that when he was a baby he loved to hang out in the swing, he often would fall asleep in it.  Liam had to be swaddled until at least six months of age, long after his brothers had given it up.  But, it made him happy and we all got sleep so I did not think anything of it. 

In April of last year, after Liam’s evaluation but before our meeting to begin services, we had taken a vacation to Florida to see family.  We drove from New York to Florida over the course of three days stopping to see family in South Carolina along the way.   Each stop we made Liam became increasingly anxious and would not go to sleep in the foreign hotel rooms.  Each day he did not take a nap, required me to hold him most of the time and would not go to sleep until 11 or 12 at night.  As the sleep deprivation went on he would be crankier and crankier.  Liam had to sleep in the bed with my husband and I to fall asleep.  Finally when we got to my brother in law’s house in Florida he was either jumping on their couch or clinging to me and crying every second.  If he could not see me or if I went to another room a total meltdown would occur.  Liam could not handle the changes, could not handle not knowing what was coming next and could not process what was going on around him.  It was a relief to get home.  While Liam was still jumping and screaming, it was not as intense as being away from home.  He loves his crib, he loves sleeping in his crib and he was back to his routine which made things marginally better. 

On the advice of my special instructor and speech therapist I started reading a book called The Out of Sync Child.  It was an eye opening experience for me.  So many things described Liam and so much of the book helped me understand what he was going through.  It was apparent to me that Liam has sensory processing disorder.  The way I have read sensory processing disorder described is that there is a traffic jam with the senses and the brain cannot process what the senses are sending.  In Liam’s case he cannot regulate himself, he cannot find that neutral setting to function on a daily basis.  There are certain things he is hyper sensitive to and certain things he is hypo sensitive to.  The most challenging part is that on any given day those things can change.  He also has a lot of challenges processing sounds, including instructions to complete projects or simple one step and two step directions.  Sometimes he can hear a noise that you or I would not even give a second thought to but for Liam it is amplified and he may not know or understand what it is and as a result his anxiety takes over and can cause a complete meltdown.  There are days where we are outside riding bikes and the simple sound of the trees blowing in the wind will cause him to panic, run into the garage and refuse to come outside and play for the rest of the afternoon.  Then there are other days when he gets a little water on his shirt when we are out watering the plants and he demands that I remove all of his clothes and ends up running around in the grass in only his diaper.  The Out of Sync Child really helped me put things into perspective. 
As time went on, Liam’s jumping intensified and he would be on our couch constantly using it as a pseudo trampoline or he would be jumping across the floor.  Liam’s frustration level was also steadily increasing.  It was as if he could not find the words to tell us what he wanted or needed and in turn he would scream, sometimes while banging his head against the wall deliberately or rolling around on the floor.  All this would be going on as I tried to deduce what he wanted.  There is not an easy way to describe Liam’s screams unless you hear them.  They are not typical toddler screams, they are high pitched shrieks that may actually manage to break a window or two one day.  With his meltdowns at an all time high over the summer of 2012, I began to worry more and more if Liam had autism, how he was going to get through life and starting preschool in the fall. 

When his six month progress note was due in September, we put in a referral to be evaluated by an occupational therapist.  Because Jake was already receiving occupational therapy, I was able to consult with our current occupational therapist and discuss different techniques that may work with Liam.  With the help of his speech therapist, I prepared a social story for Liam about going to preschool and we attended a mommy and me class at the preschool building over the summer so that Liam would have a familiar setting to relate to when beginning school in the fall, hopefully relieving his anxiety.  Our preschool provided an option for the teachers to come to our house about a week before school started so they could be introduced in a familiar setting.    
September came and Liam really rose to the occasion.  The teachers would come out to the car to bring the boys into the classroom and without hesitation they went.  Liam barely even said goodbye.  I was so proud of all of them, but especially Liam because I know how hard it was for him to go into a new situation.  His SEIT attended school with him two days a week for an hour at a time to assist Liam with social and play skills in the classroom.  At the beginning of the year he did not play much with other children, he generally sat by himself taking it all in, getting to know the routine.  I was pleased he was not screaming and that he separated well from me.  All the preparation had paid off. 
The classroom was a lot for Liam to take in and process all of the information.  As the year went on Liam became comfortable with the routine and began to participate in some of the activities, especially the music/singing activities.  He finally began receiving occupational therapy twice a week at the end of November that included a sensory diet with lots of proprioceptive input.  Part of his sensory diet includes the Wilbarger brushing technique, joint compressions, and a compression vest.  He learned to take sensory breaks at school and jump to organize himself.  

Liam’s language skills began to improve dramatically and his participation at school was increasing.  He had a great first year of preschool and his social skills continue to improve.  He is finally addressing his brothers directly by name and asking them for a turn instead of coming to me and crying.  Liam was able to start to identify the various things he needed to do to regulate himself, whether it was jumping or needing a squish or a roll in a blanket.  Sometimes it would just be to walk away from an over stimulating situation and do an activity that would comfort him (early on it was lining up candles in his toy menorah, now it is spelling words on the refrigerator with our magnetic letters, at school it usually meant he would go to a corner and jump). 

As he becomes more and more social and vocal we are realizing how smart he is and how much he has been taking in all this time.  He knew everyone’s name at school and how to spell it.  He can read quite a few words out of context, like dog, cat, zoo, in, out, on, car, cake, fish, Jupiter (see my blog post Going on a Space Adventure), thank you, star, just to name a few.  A calming activity for Liam is to line up magnetic letters on our refrigerator.  Now we have found that he not only lines up the letters but he has expanded his play and enjoys spelling real words.  Just the other day he called me into the kitchen to tell me he spelled mall and I found Macys spelled out on the fridge.  That is one of the stores he sees when we drive past the mall and to him that is he how you spell mall.  

With the sensory diet in place he has made huge strides.   This is not to say we do not deal with his sensory issues on a daily basis.  I think Liam, his brothers, his father and myself have all learned and are learning to cope with the various challenges faced each day.  I worry less about autism now that I have seen him grow by working with him and implementing his sensory diet.  It really has been a crazy ride so far, especially when he has two brothers the same age who cannot understand why Liam needs to be treated a little different sometimes.  I have seen such great improvements with him that no one can tell me that sensory processing disorder does not exist.  I think Liam will always struggle to process information and will always need to find ways to cope with different situations.  We suspect a lot of what is going on with him is related to auditory processing but he is still too young to receive a definitive diagnosis in that area.  He continues to struggle with understanding and processing directions in a classroom setting and his anxiety will often take over in new situations.  Every child is different and, as a result, different therapies work for different kids.  I do a ton of research, it is just part of my nature, and I am always looking for different things that will engage Liam and assist him in interacting with other kids, other adults, and trying new things.  I constantly find us taking two steps forward and one step back but I try to keep focused on the progress and I try to start each day with a calm and positive attitude. 
Liam got his face painted at a birthday party recently!  Another success.
 Recently, Liam, along with his brothers, were part of a child development study.  They confirmed his sensory processing diagnosis!  They were unable to completely rule out autism and we will be referred for further testing.  My only goal is to get Liam all the help and services he needs regardless of the label placed on him.