One Tough Week/Hayden's History

Three days ago we learned that Hayden demonstrates behaviors which are characteristic of a child with Autism.  We thought we would start a blog to track Hayden's history and progress. The easiest thing to do is to talk about what we have known up to this past Monday. 

We started to get concerned about Hayden's speech development and talked to his pediatrician in VA at his two year checkup.  I specifically brought up Autism and the pediatrician said that he was not concerned at all.  He did not feel that Hayden showed any symptoms of Autism and said that he would catch up quickly.  

We moved to NC when Hayden was about 2 1/2 and I began to get concerned when he did not interact with his cousins.  He has one cousin a few months older and one a few months younger, so we expected him to mix well with them.  When we would go to the park Hayden would always prefer to go off on his own and play alone while the other two played together.  It soon became apparent that he was afraid of heights and swings.  I guess I hoped that his fears were keeping him from being social, but deep down I knew something was wrong and wanted answers. 

Hayden had been attending Puggles on Wednesday nights at church, so I asked his teacher if she had any concerns about him.  A single question turned into an hour long conversation about red flags she had seen. Hayden did not transition well and didn't always respond when he was talked to.  He did not talk much, and when he did it was difficult to understand him.  Dill and I felt devastated that he was acting so different from his peers and another adult was confirming some of our suspicions.  His 3 year checkup was the following week, so we started writing down all of our concerns for his doctor.  

At his 3 year checkup (on March 16th)we expressed our concerns to his new pediatrician.  He did a few tests in the office and told us right away that he did not feel Hayden was Autistic.  He was leaning toward Sensory Processing Disorder (SPD) and sent us to an Occupational Therapist (OT) for an evaluation.  

The OT evaluation was on March 25th.  She felt like he did exhibit signs of SPD and recommended him to receive OT once a week for 45 minutes.  She explained that his fear of heights and swings had to do with his vestibular sense (this deals with gravity).  When his feet left the ground, he felt unbalanced and would get very scared.   She also recommended him to have a Speech Therapy (ST) evaluation.  In the meantime, we had his hearing checked to make sure his communication was not being hindered by lack of hearing.  The hearing checked out fine.  The ST evaluation was another story.  The evaluation lasted about an hour and it was one of the hardest things I have ever had to watch.  The therapist would ask him simple questions about cards she would show him and he couldn't tell her what they were.   For example: shoes, brush, hat, dog.  I knew that he knew what the objects were, but he looked at her with a very confused look and then at me for help.  His brain was not making the connection between the object on the card and the name it is called.  I felt so helpless watching him struggle.  She was able to tell me immediately that he was able to communicate on a 22-24 month old level.  He was a full year behind!  She recommended ST once a week for 30 minutes.

We managed to get both of his therapy sessions scheduled on Tuesdays.  His first day of therapy started on April 7th.  Since then, he has had 14 sessions each of OT and ST.  The last 3 1/2 months have been so encouraging.  Hayden has made great strides in speech.  We can understand a lot more of what he says and he is asking a lot of questions on his own.  We are able to have little conversations with him instead of him just repeating single words we would say.  While we have seen improvement in speech, the most noticeable improvement has been with his OT.  Hayden received a new playset with a ladder, slide, rockwall, swings and a glider for his birthday in early March.  It was a wonderful gift, but he was too afraid to explore it.   He would go down the slide, but only if I lifted him up and held him as he went down.  After receiving OT, Hayden will now climb the ladder and go down the slide on his own.  He has also recently began swinging on the swing and glider by himself.  The rockwall is still a little scary, but he is getting close.  His OT has brought him so far!  About two weeks ago she called me back to the gym where they do their "heavy work" so I could see what new thing Hayden was doing.  She had him swinging from a trapeze swing and dropping down a few feet to big pillows "squishies".  As I stood there watching, all I could do was cry and thank God for his progress.  Three months ago he screamed if I even mentioned a swing.  Now he was swinging from a trapeze and allowing his body to fall!  Hayden has gained so much confidence through OT and ST and Dill and I have both been so encouraged.

When Hayden first started receiving OT and ST, his therapists suggested that we look into Special Education Services through Wake County.  Wake County provides Special Education Preschool Services to those who qualify.  This could mean getting extra ST or OT sessions at no cost to us or even enrolling him in a Preschool that provides Special Education Services.  We started the process back in April and we should find out their recommendations on July 28th.  So far we have been in for a preliminary evaluation with a Case Manager and Special Ed. Teacher.  We had a full evaluation with a Psychologist, Special Ed. Teacher, OT and ST.  We then had the Special Ed. Teacher and Case Manager do a home visit to evaluate him in his own (comfortable) setting.  A week later the Psychologist was scheduled to come out and do a home visit as well.  That visit was this past Monday, July 13th...

I thought the Psychologist was coming to play with Hayden and ask more questions, but she was actually coming to break the news in person.  We have not had much rain lately, but Monday morning it poured from the time she arrived until the time she left.  The weather seemed to be expressing the way I felt inside.  Hayden was playing with his toys and being just as sweet as always while we talked.  My heart was breaking while he was totally oblivious to our conversation. Everything she said was true as far as why they believe him to be Autistic, but I just still couldn't believe it.   We had two pediatricians tell us that he was not.  He makes good eye contact, he is loving and affectionate, he doesn't "look" autistic, he doesn't sway his body or do flapping movements.  I accepted what she told me and told her that we would do whatever we needed to do to help Hayden.  She must have thought that it didn't phase me, because she kept waiting for me to respond to the news and I couldn't.  I don't think I showed much emotion...until I closed the door.  I have been crying on and off since Monday.  Dill got home from work (summer workouts) about 11:30 and I waited until he ate lunch before I broke the news to him.  I was trying to be so strong because I thought he would totally break down.  He surprised me with how well he took it.  He was stunned and didn't believe it, but overall took it well.  After I could see that he was going to be the strong one, my floodgates opened up.  The emotions have been many, but the LOVE for Hayden has been the biggest.  Dill and I can't seem to get enough squeezes from him and we are constantly telling him how much we love him.  We know that God has a plan for Hayden and it is bigger than we will ever know.   

Since Monday, God has placed so many encouraging people in our lives.  We know that we are not alone.  While we have been struggling with all the emotions, Hayden hasn't changed a bit.  He is still the sweet 3 year old boy who loves trucks, planes, trains, boats and anything else that moves.  He loves to chase our poor old dog, Tawny, around the house and yard laughing the whole time.  He loves his family and names many of them daily.  He loves to read "Smash Crash" and he says the sweetest prayers at night before going to sleep.  This evening, he walked up to me and stroked my face with his little hand and said "Don't worry, going to be OK."  He then kissed me and gave a big squeeze.  He turned to Dill and did the same thing.  He is our sweet, sweet boy.

Please pray for us as we embark on this new journey, Hayden's journey.  The unknown is very scary to us, but we know that God has all the control and knows exactly how everything will turn out.