Saturday, August 17, 2013

How we came to get Matthew's diagnosis.

Matthew is my third child.  My daughter and son were both "normal" (rolled over, crawled, walked, talked, followed directions, etc all on schedule).  So when Matthew was born and cried ALL the time (except for when he was being held) it was very difficult.  Looking back on it now I see signs of something being off, but I just took it as his personality.  He didn't like getting massages (which my other kids loved, I'm a massage therapist), cried anytime he was in the car, didn't really respond to talking a whole lot, etc.  

By the time Matthew was 18 months and still crying a lot, not being able to do a lot of physical things (running, walking up steps, climbing, unstable walking, not really using a fork or spoon well) and wasn't speaking AT ALL I starting wondering if something was going on.  So naturally I went to his doctor and voiced my concerns.  He told me he was fine, a happy healthy little boy. He said, "he's just a boy. Most boys talk later in life. He is a more serious child, he is just taking it all in. And we can't really do anything until after he's 2 anyway, so we'll reevaluate at 2 years old." I felt like I wasn't being listened to.  I felt like I was being treated like a first time paranoid mom.  And I told him, "I have 2 other kids I'm not being paranoid, I can tell there is something not right." But he said to just wait and see what the next 6 months brought.

Matthew has to have things "just so" and likes to line things up
Well his 2 year mark hit and nothing changed; still no talking (hardly any babbling), his physical development had improved some, and couldn't follow simple one-step directions. Thankfully my sister's friend was visiting with her at my house and she voiced concern to me.  She was getting her Master's degree in Early Intervention Therapy.  She told me I should contact my local agency and get Matthew evaluated.  Early Intervention????  What's that?  I knew there was something wrong but I felt weird about having my son evaluated.  I wanted to just ignore the situation and pretend that it didn't exist.  This is a time in my life that I wish I could rewind time and change my actions, but I can't so all I can do is learn and move on (people tell me I should give myself a break because I was pregnant with our 4th child starting when Matthew was about 20 months old and was pretty much in bed for 6 months sick, but still I feel like I let Matthew down).  So a few months later (September I think), I contacted Early Intervention.  We got him evaluated and sure enough he qualified for services in Physical Therapy and Speech Therapy. So we started right up. He was doing so well with his therapies.  He really made a lot of progress with physical therapy.  With speech his listening skills were getting better but his verbal communication just wasn't coming along.  His therapist would try to work with him on his bilabial sounds (m, p, b) but everytime he went to say a word like "mat" is would come out "ca".  He was able to perform back of the throat sounds (which are supposed to be harder to produce) and couldn't do bilabial (the "easier" sounds). This really baffled everyone who worked with him.  

By November of that same year we got him in for an evaluation for a Developmental and Behavioral Pediatrician (started the paperwork on that the March of that year, our original appointment was for January, but got in on a cancellation). The doctor was 3 hours away, but we felt it was totally worth it.  They evaluated him for about 2 hours (which was recorded for them to review) and I also had to fill out a huge amount of paperwork of his history.  Then we met with the doctor. She said okay we are going to have a team get together and review his history and evaluation.  What are you looking to achieve from all this?  I told her, " I want you to tell me what is going on with my son!  I want you to tell me something other than, 'He is really interesting' ".  So we left and had an appointment to come back a week later for another meeting.  When we came back together the doctor said, "now I know that you don't want to heard this, but 'Matthew is very interesting' but we are putting him on the Autism Spectrum.  He is on the "highly functioning" side. And he also has a severe speech disorder." She then provided us with a whole bunch of resources and goals that she would like to see him achieve (i.e. peer play vs. parallel play).  We left the appointment feeling a little bit better, at least we has some answers, but does all this mean for our family and most especially for Matthew?

Matthew around the age he got diagnosed.
I cried a lot the next little while.  Now looking back I notice it was a grieving process.  I "lost" my son.  The son that was going to grow up, go to college, get married, have a career, etc.  (Now these things might happen in the future, I don't know.  One thing that I have learned on this adventure of autism is that you can not know what is going to happen in the future).   

I will continue Matthew's story on another post, but that is how we came to getting Matthew diagnosed with Autism.  It was a long and stressful road.  Since then it hasn't been a basket of roses but it has helped a lot with having some answers so that we could move forward and help Matthew be the most successful he can be in this life.

1 comment:

  1. I love you, MaryBeth. I am so thankful I have you to look up and ahead to.
    I think we all feel like we let the kids down when situations like this occur. I know I do!