Thursday, April 28, 2011

April is Autism Awareness Month

   Okay, so I'm a little late in doing this post since April only has thirty days and today is the 28th!  (But that's pretty typical of how I get things done these days: close to the last minute and out of necessity). Truthfully, I didn't think of the idea as a post for this blog until just now.
   My son, Sammy (now 3 1/2 years old) is "on the spectrum."  For those of you unfamiliar with this term, it means that my son has autism, as in Autism Spectrum Disorders (ASD).
Sammy, at 7 months, and Mommy

Did you know that...
- in the U.S., 1 out of every 110 children is diagnosed with autism?
- boys are diagnosed 3-4 times more frequently than girls, bringing that current estimate to 1 out of 70? 

Sammy and older sister Dana;
he has always loved and looked up to her
   I would like to briefly share our story... in the hopes of educating others about autism, and reaching out to anyone who suspects that their child (or the child of someone they know) has it.  Early diagnosis and intervention are key. (I'm sounding preachy here, but its an important point.)
   My son was formally "diagnosed" at the age of 15 months, and since we did not linger in denial and started appropriate therapies right away, he has made tremendous, miraculous progress.  When children are young and developing, they are more "malleable"-- meaning that there is more room for them to make improvements-- and perhaps even overcome-- delays in their development.
For a time, Sammy LOVED his giant Raggedy Ann doll;
we called it his girlfriend
   At Sammy's nine month well-check, our pediatrician noticed that he did not want to bear weight on his legs when pulled up to standing (with support).  The doctor was only slightly concerned, but recommended that we have it checked out by a physical therapist.  Sammy didn't have a lot of the obvious, "classic" social symptoms of autism.  His signs were more subtle: they presented as sensory issues and delays.  I did notice that Sammy was especially sensitive to bright sunlight streaming in through the car window, and would sometimes shake his head back and forth in response.  [ I now know this is an example of repetitive motor behaviors.]  My husband, a child psychiatric nurse practitioner, already had his suspicions while I was blissfully unaware and just totally in love with my baby boy.  
   We began working with a physical therapist twice a week.  At 11 months, Sammy would pull to stand and even cruise a little, but his left foot would always be on tippy-toe, not flat on the floor. 
Sammy doing physical therapy in a bucket or rice for sensory stimulation on his foot
pulling up to stand in the rice
eye contact and mimicking sounds and facial expressions
   The other issue that emerged with Sammy, at around the same time, is that when we started introducing solids and subsequently finger foods, he would make those funny, endearing little faces (see below) that as a parent, makes you crack up and pull out the camera.  
initial reaction to tasting a new food

pretty cute, huh?

You can see in this photo that Sammy is aware and alert and focuses his attention on me when I am taking a picture; some autistic children are described as "being in their own world" and do not make eye contact or respond to their name being called.

    We grew concerned, though, when Sammy did not make progress and continued to spit out all solids at close to a year.  So we began feeding therapy a couple times a week.
    At the recommendation of our pediatrician, we also contacted Birth to Three.  If you are not familiar with this agency, click on the link above.  Every state has one (although some have slightly different names).  Their mission is "to strengthen the capacity of families to meet the developmental and health related needs of their infants and toddlers who have delays or disabilities."  Two trained professionals came to our home to observe and evaluate our concerns about Sammy in a comfortable setting.  (FYI: B23 will also visit a child at a daycare setting, too, if both parents work).
   We learned that Sammy's delays were "global" (not just limited to one area).  With subsequent testing, he scored below average in 3 (of 5 total) domains: gross motor skills, receptive and expressive language and self-help/adaptive skills. 
   When children do not yet have words, they normally indicate their wants with the use of gestures like pointing, grunting or taking a caretaker by the hand to indicate they want "up" or a toy on a shelf or a bottle in fridge, etc.  Sammy wasn't doing that.

Bro & Sis
   We visited a pediatric neurologist, who ruled out neurological issues.  We were also so very lucky to get into a research study at the Infant & Toddlers Developmental Disabilities Clinic at the Yale Child Study Center.  A team of specialists conducted a comprehensive 2-day evaluation with Sammy, my husband and I.  [This type of testing would have cost us c.$7,000 out-of-pocket, but we received a $50 gift certificate to Target for our time!]  At the end, the team gave us a feedback session, explaining Sammy's results, with a diagnosis and recommendations.  (The complete report is a total of 25-30 pages).
    Most of our services were provided by Birth To Three, and all of the therapists we worked with were wonderful.  (This is not always the case for everyone, but if you are unhappy with one of your clinicians, you can request to switch.)  But the beauty of it is that they show you things that you can practice and do with your child on a daily basis when they are not there.
   Sammy finally started walking on his own at the age of 18 months. When we finally made a breakthrough with him starting to eat solids, we then discovered he had some food allergies!  (If it's not one thing, it's another!)  So I now carry Benadryl and an Epi-pen Jr. with me everywhere I go.  When he has a food reaction, Sammy usually just gets hives, so thankfully, we have not had to use the Epi-pen.  [Knock on wood!!]

   At the age of 3 (back in November), Sammy "graduated" from Birth To Three.  Any services that he needs are now provided by our local school system.  However, when the school staff observed him one-on-one and with his peers, they did not see his softer (more subtle) signs (that we see mostly at home when he is tired or off-schedule).  They did not feel special services were necessary at this time.  However, we agreed that if the need arises, we will certainly advocate for services for him.
   Sammy now attends a small preschool program five days a week from 9am-1pm.  He has friends and the social interaction, activities and structure are great for him-- it's exactly what he needs right now.  Most of the parents didn't know Sammy was autistic until I told them.  Thankfully, he's on the milder end now that he has made so much progress.  When he was re-evaluated by the Yale team after his 3rd birthday, they "downgraded" his diagnosis to PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified)-- which is the milder end of the autism spectrum.
   The issues that we see now with Sammy occur mostly at home.  He's very particular (OCD-ish) about certain things (e.g., drawers have to be fully closed-not open even a crack) and he tends to perseverate or get stuck on one thing for a while (e.g. reading the same book or watching the same TV show over and over (and over!).  More recently, he is into superheroes and wants to wear his Batman cape ALLTHE TIME.  When you have to say no or set limits, this can lead to an all out tantrum (which is not all that uncommon among regular 3 year olds anyway).
   But Sammy is my special boy, and I love him unconditionally for who he is, even though he can be stubborn and challenging at times.  (Name one kid who isn't?)

Bottom line: We got help for Sammy early and he has made tremendous strides!!
   We followed the recommendations of our doctor, even though we were scared (or, more accurately, terrified) of what we might learn.  We did research and we asked a lot of questions.  After diagnosis, we educated ourselves and applied what we learned and we networked with parents of other autistic children. 
2nd most important bottom line is that the best interest of the child is what's most important-- not how we [adults] feel about it.  Think about what's best for the kid and get him or her the help s/he needs.
For more information about autism, I'd like to recommend an excellent resource website:  
   Autism Speaks (click here)

    I am more than happy to talk further with anyone who has questions or wants to know more-- by all means, please comment or send me an e-mail!

Have a lovely day!  



Iowa Sunshine said...

thank you for sharing some of your story about Sammy -- what a sweet boy (and a cute Raggedy Ann girlfriend!). no matter how many books and articles i read on PDD, i am in awe of and always welcome the family stories of triumph and challenge. i admire your determination in seeking early intervention and embracing various resources. i appreciate the reminder of Autism month, too. take care.

Joanna said...

What a wonderful story - I'm so glad you took the time to write it:)