Sally's Story, Part 2

*In order to make the initial DDD/EI referral process easier to understand, I am telling the story of "Sally" a fictionalized 2 year-old, and her family, as they work through the DDD referral process. Sally lives with her mom and dad, and her 6 month old brother. Dad works full time and Mom works part time. Sally and her baby brother stay with a babysitter 2 days each week while Mom works. Sally's parents are concerned because Sally is not saying any words. She is also very easily frustrated and "melts down" several times each day, both at home and at the babysitter's house. Sally does not seem interested in any of her toys, preferring to wave ribbons in front of her face, and line her teddy bears up in rows. When we last peeked in on Sally and her family, they had completed a DDD referral, and had an independent developmental evaluation. The evaluator judged that Sally was at risk for autism, and recommended that she begin early intervention services.

A week or so after the evaluation, Sally's parents receive a call from someone who introduces herself as a DDD support coordinator. The support coordinator tells Sally's parents that she has received the evaluation and would like to set up a meeting to write an IFSP and begin services. Still somewhat in shock, Sally's parents agree to a time for the support coordinator to come to their house.
When the support coordinator arrives, she explains that they will be writing an IFSP (Individualized Family Service Plan) to determine what Sally's strengths and needs are, and which services would be most beneficial. The support coordinator asks questions about Sally's daily routine, her skills, and the things that worry her parents. She also asks Sally's parents what they would like Sally to be doing in 6 months. Dad responds that he would like Sally to be talking, and not melt down so much. Mom replies that she would like Sally to notice and play with her baby brother. The support coordinator records this, then says that it sounds like Sally would benefit from speech therapy, as well as developmental special instruction (early intervention). She explains that in order for Sally to qualify for speech therapy she must have a specific speech evaluation first. Sally's parents sign a release form so that the support coordinator can share their file with other therapists, and they sign on the dotted lines that the support coordinator points out. The support coordinator gives Sally's parents a list of speech therapists and advises them to start calling and trying to find a therapist who can do a speech evaluation, and hopefully provide ongoing therapy. She shakes hands with Sally's parents, and leaves.
A week or so later, Sally's parents receive a phone call from someone who introduces herself as an early interventionist. She has received Sally's file and wants to begin therapy.

You can find my original post on getting started here, and Part 1 of Sally's story here.

The Story of Sally

In my Getting Started post I tried to outline the process for beginning early intervention services for a young child. Since it can be confusing at best, I thought I'd try and make up a story to show how the referral process can work. So, this will be the story of Sally. Again, Sally is fictional. She is not one of the kids that I work with, although her story will hopefully reflect the process as it typically works.
Sally is a 2 year-old girl. She lives with her mom and dad, and her 6 month old brother. Dad works full time and Mom works part time. Sally and her baby brother stay with a babysitter 2 days each week while Mom works. Sally's parents are concerned because Sally is not saying any words. She is also very easily frustrated and "melts down" several times each day, both at home and at the babysitter's house. Sally does not seem interested in any of her toys, preferring to wave ribbons in front of her face, and line her teddy bears up in rows.
Sally's parents discuss their concerns with their pediatrician. Up until now, the pediatrician has taken a "wait and see" approach, but now he suggests that Sally might benefit from some extra help. Sally's pediatrician recommends that her parents refer her to the DDD, and gives them a referral form. Sally's parents fill out and submit the referral form.
The next week, Sally's parents receive a phone call from a support coordinator. The support coordinator says that in order to determine if Sally will be eligible for services, she must have an independent evaluation. Sally's parents are referred to Phoenix Children's Hospital, and an evaluation is scheduled.
During the evaluation, Sally's parents are asked about her development up until that point. At what ages did she crawl, walk, eat on her own, etc? Has she been ill or hospitalized since birth? What are their specific concerns? The evaluator also observes Sally, and attempts to engage her in some fun activities. After more questions and observations, the evaluator says that Sally appears to have some communication issues, and may be at risk for autism. She also says that Sally would probably qualify for services based on this. She tells Sally's parents (who are somewhat overwhelmed at this point), that she will write up a formal evaluation and send it to the support coordinator.
Sally's parents are still in shock as they drive home. "Autism? Aren't those the kids who sit in the corner and rock back and forth? What does this mean?" At home, Sally's parents get online and search for information about autism, but much of it is discouraging.

To be continued...