Friday, April 13, 2012

Pervasive Developmental Disorder - Autism Spectrum

Hi everyone!

I haven't posted in forever.  I am not even going to promise that I will post more often.  Life has been a bit... chaotic.

Good news are that we are alive and doing fairly well. 

As some of you may know, we started Janai in daycare last year for a bit of socialization and to address the delays and issues that Dr. Williamson and us noticed in her 2 yr evaluation.  He felt Janai was showing some signs of Pervasive Developmental Disorder.  I was in denial for a short period of time and thought that maybe Janai was struggling due to being a stay at home baby.  So, we started her in toddler daycare program in a local preschool.

Janai struggled so much to adapt to the daycare/school.  We started her 5 days a week to get her accustomed to it and switched her to 2 days per week when things seemed a bit better.  It was almost 6 months before we were able to drop Janai off without her being in tears.  As I kept waiting for her to start "talking" and hearing people tell me that "she will talk soon", I started to get the feeling that something was in fact off.  Janai could speak (knew numbers, letters, colors, recited her books and repeated what we said), but she would not use her words to communicate a need or respond to a question unless it was an abstract concept like naming colors or objects or saying the sound animals made.

A psychologist said we needed to start speech therapy and as I looked for a therapist, many of the websites and clinics mentioned treating kids with autism and sensory processing disorders.  Speech therapy started in September.  Meanwhile, I researched sensory processing disorder (SPD) and most of the symptoms fit with Janai's behavior.  Since Occupational Therapy is very helpful for SPD, I set off to find an therapist for that too.  Janai began receiving occupational therapy in October.  By the end of the year something inside me told me that Janai was not progressing as I thougth she would in the daycare/school.  Janai was having a lot of meltdowns and she seemed increasingly frustrated at not being able to tell us what she wanted and us not being able to guess her need quickly enough.  She never even really looked excited about going to little school 

Our Speech and Language Pathologist (SLP) said she thought Janai would benefit from going to a special ed school before participating in a regular classroom.  So, I set off to find a special ed school and scheduled another eval with Dr Williamson.  I could tell something was not right so I started to "prepare" myself to hear her formal diagnosis.  I told Adrian that he needed to prepare himself for hearing what he so much refused to see.  He felt Janai's behavior was a consequence of being too spoiled and clingy. Nevertheless, I figured it was better to address any issues now as opposed to waiting 3 or 4 years and regret wasting time. I can't remember how many times I would hear  from friends and family "you just need to wait and give her time and she'll talk" and "she's just fine because I have a friend with 3 preemies and they are all ok".  Ocassionally, I did question myself but I decided I had to follow my instinct and continue to advocate for my little girl.

By the time we went to Dr Williamson's appt for an eval, we had applied to Parish school and Janai was rejected due to her poor regulation.  She freaked out when she found herself alone with the SLP that was evaluating her for admission and it took a long while for me to get her to calm down.  Janai's  stranger anxiety was exacerbated after the Parish admissions evaluation.  At Dr. Williamson's appt in February 2012, Janai cried/screamed/shrieked for over an hour because she wanted us to walk out.  During a small pause in her crying, a simple look from Dr Williamson was enough to set her off again.  Eventually, she distracted herself watching her own videos on Adrian's iPhone and she calmed enough to participate in the evaluation.  During the appt, based on the results of the questionaires and behaviors we described, Dr Williamson broke the confirmation to us:  Janai is on the autism spectrum with Pervasive Developmental Disorder.  Her delay gap between her actual age and development age has widened since her last eval which is more concerning as the gap may be get too big if it continues that trend.  We suspect her austim is due to her being a preemie, but the Dr suggested some genetic testing to find other reasons - the diagnosis would not change though.

We received Dr Williamson's formal evaluation report two months ago and when I read the report is when the news "formally" sinked in.  My little girl is autistic.  Why?  How?  Why her?  Why me?  It didnt matter how much I thought I had prepared myself to hear it, I hated to hear that.  I sobbed, and still do ocassionally, mourning her health and future.

The report the daycare/school to Dr Williamson was disheartening.  According to them, Janai did not know numbers or letter and did not ride their tricycles.  But at home, Janai has known the ABC since 2 yrs old, recognized all upper case letters, counted to 50 on her own and knew primary colors and shapes.  Her favorite activity at home for the past year has been riding the tricycle.  Yet, she would never do any of this at the little school.  I regret not getting her out sooner.  The daycare/school staff were wonderful but they were not trained to help Janai and they had too many children to give her the attention she required.

Since then, Janai has started attending The Westview School, a school specifically for autistic children.  With the help of her wonderful Speech Therapist (Judy Boshart), Occupational Therapists (Sabrina Sosa Madriguali and Pam Paguio), her school Teacher (Ashlee Mataway) and Teacher Assistant (Rocio) plus many other wonderful staff members at the Westview School, Janai has made great progress.  She is still not talking conversationally, but does say a few words on cue to request things and she seems very willing and interested in interacting with the kids.  Westview staff knew of her extreme separation anxiety, but we were so surprised to see that in a matter of a couple of weeks Janai acclimated quite well.  Currently, when I say "we're going to school", she gets off the bed and goes downstairs excited to leave and has a huge smile coming home.  She welcomes me home with a hug, which was hard to get before.  Out of the blue, she mentiones her teacher's name or a classmate's name which lets me know she is thinking of school, comes home singing their songs, etc.  The teacher has sent me videos which show how much Janai is enjoying herself. 

Janai's meltdowns at home are somewhat better.  If the meltdown is not very bad, I can calm her down with tricks that Janai's Teacher Assistant Rocio taught me.  If the meltdown is bad, Janai has started to swing her arms/hands at us.  Of course people stare, but I have had to grow thicker skin.  I am hoping that with the help of the behavioral therapist, we will be able to control the meltdowns when they happen as well as Janai gaining ability to not go into meltdowns as often.

Before starting with Westview, we had applied at The Monarch School.  We were thrilled to find out that Janai was accepted!  We are waiting to find out if we quality for financial assistance as that is the only way we could send Janai to their school.  We know Monarch has a wonderful program that includes DIR/Floortime therapy, their class day is longer and the therapies are included in the tuition.  The credentials of all their staff members are amazing and some of the success stories bring me to tears.  If for some reason, we do not get financial assistance to switch to Monarch, however, I am confident that Westview will be great for Janai based on the amazing progress we have seen in two months with Janai.

I continue to research and read of anything else that I can educate me to help Janai or find out any other treatments that may be helpful for her.  These days, I am reading about neurofeedback and biomedicine to treat autism.  I am soon going to buy Janai an iPad since I have read great things about their apps helping special needs children to communicate.  If you have any tips on therapies or ideas that have helped you, please share!

Seeing your dreams for your child sort of disappear and be replaced with the overwhelming (and costly) challenge ahead with an unknown future really shook me to the core for a while in addition to other family matters that were really draining the little bit of energy I could muster. These days, I feel a lot more positive. The bad vibes have moved away and the future seems brigther. I am confident that, with the proper help, my little girl will be independent, and I am eagerly looking forward to the day when I will ask her "how was school today?" and she will actually answer.

P.S. It was great to finally type this post! I hope everyone is doing well! Here is one of the most recent pictures I have of Janai and myself from about 3 wks ago.  She is into my makeup now and let me put blush, eye shadow and lipstick on her.  If I can get her to not eat the lipstick, I probably would consider lending her my makeup bag for a few minutes!  My camera got wet and died, but I hope to get a new camera soon so that I can take more videos and photos again.

P.S. #2.  For those of you who know Adrian, we have decided to separate and get a divorce and he has moved out of the house as of two weeks ago.  We are amicable (as much as possible :-D) for the sake of Janai and her progress.  While this is not the happy ending I dreamed of, I am sure this is in the best interest of everyone involved.  My parents continue to be my rock of support as they have always been as well as a few friends who know the details and have lend me their shoulder, and Janai is my driving force to move forward.


  1. My heart goes out to you all - I know each new diagnosis brings us closer to helping our children, but the blow of getting it sometimes takes a while to recover from.

    You mentioned getting Janai an iPad. Sami actually wrote a book about using the iPad with special needs kids ( that you might find helpful.

    We keep you and your family in our thoughts.

    Laura, Sami, Noah & Maya Rahman

  2. One more thing, Easter Seals of Greater Houston has a support group you might find helpful for iPad issues, Full disclosure, Sami is involved in that one, too.