Facing my new reality

October 9, 2013

Sam the Anti-Preemie: Eating a pear
Back in December, I wrote about my joy at Sam's PDD-NOS diagnosis. I was relieved that he was not diagnosed with Autism, but his own odditites, some of which were autistic in nature and some that were not. Since that diagnosis, I have done everything I could to help Sam achieve "normalcy".

The first thing I did was fire Sam's speech therapist. There were many reasons why I made the change. Mostly, I was tired of her telling me my son was autistic. When I got the official diagnosis, I took that as my proof that this woman was not right for Sam or me... so I let her go. This was one of the best things I could have done for Sam. He immediately took to his new therapist, and started to show progress right away.

With speech therapy in a good place, I started Sam in Floortime therapy. This program was a great first step into early intervention for PDD-NOS. The therapist we worked with helped everyone (Sam, Peter, Irene, my parents, both nannies and myself) learn new ways to engage with Sam and spark his interest in playing with us. We stayed with this therapy for two months.

Then, I Sam was evaluated by the Regional Center of the East Bay, and they determined that Sam was better classified as Autism Spectrum (yes - DSM-V helped with this new classification). The recommendation by the developmental psychologist was for us to enroll Sam in ABA therapy for a minimum of sixteen hours a week.

Being determined to help Sam in every way possible, I found a wonderful ABA team and we got to work.

Sam has not been in ABA therapy for over six months. He has shown wonderful progress in a number of areas. His progress was a great relief to me. I was starting to relax, and believe that Sam would be off the spectrum in now time, and would just be a normal little boy, with nothing holding him back.

Well, I am here to say I was wrong. I was wrong about a lot of things.

  • I was wrong to downplay Sam's condition.
  • I was wrong to want Sam to be someone he was not.
  • I was wrong to think anything was going to hold Sam back.

By turning three, Sam had to undergo a whole new suite of tests and evaluations. The results of those evaluations are in, and they were not at all what I was expecting to hear. Sam is delayed at least a year in all major categories tested: gross motor, fine motor, communication, social communication, self help, interpersonal relationships, social skills, etc. A few key stats:

  • Social-Interpersonal relationships: Sam tested equivalent to an eight month old
  • Socialization play: Sam tested equivalent to a one year old
  • On the SCQ scale (one of the main autism screens) Sam had a score of 25 on one persons evaluation and 20 on another. 15 puts you on the spectrum and 22 is the cut off from other disorders and autism.
  • The ADOS (Autism Diagnostic Observation Schedule) results were no better. Sam scored a 19. Autism cutoff is 12... Autism spectrum cutoff is 8.
  • On the ASRS (Autism Spectrum Rating Scales) testing, Sam's scores were very elevated in most areas.
  • Receptive language, Sam tested equivalent to a one and a half year old.
  • Gross Motor skills, Sam tested equivalent to a one year ten month old.
  • Fine motor skills, Sam tested equivalent to a two year 3 month old.

Based on all of this, Sam will continue his participation in the Regional Center. The Oakland Unified School district has offered Sam placement in an Autism classroom (5 hours a day, 5 days a week), speech therapy and Occupational Therapy. For now, I am not going to put Sam in the OUSD classroom, but place him in a nearby mainstream school two days a week (with one of his ABA therapists going with him). In a couple of months, I will sit down with Sam's ABA team and we will make a decision if he should be enrolled in the OUSD Autism classroom.

Bottom line to all of this - Sam has Autism.

Say it with me, Sam has Autism.

I will practice saying this over and over.

It is my new reality.

It is Sam's continuing reality.

Tagged: Autism
I imagine that was a difficult diagnosis to get. I admire your courage and all the ways you have continued to find the right support for Sam.
It’s good you have some answers and facts—you’re a “give me the straight facts so I can figure out my course” sorta woman. It’s that decisive strength that makes you a woman and mom to admire. At the end of the day you love him—and you are one top notch mom leaving no stone unturned. Focus on the joy and love he brings to your life and make peace.
Jenny Holbrook
It is Autism. I am helping you say it. It is NOT the end. It is something that can be worked with. He can be a functioning member of society. He is a little boy who loves you, and laughs, and enjoys lots of things. You are a great mom. You put your heart and soul into helping your kids. Do not go to the sad place. Autism is much more understood than it has been in the past and there are lots of programs. It is OK to have a new reality. Xoxo, Jenny
Crystal Childress
I work with some of the most gifted, talented, beautiful and loving children int the world. They ALL have AUTISM! It wasn’t a profession I set out to get into, but I’ve been blessed and honored in doing so. Although I don’t know him, I would imagine that Sam is a joy to behold. Marvel in that joy when you feel like going to that sad place. You are both lucky to have one another.
My best wishes to you both,

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