We Wait

From a Family With a Recently Diagnosed Child

Our daughter was diagnosed with autism in February, 2014 at the age of 30 months. It took concerned family members, speech delay (and loss) and a noticeable difference when interacting (or rather, not interacting) with her peers for us to bring our concerns to our pediatrician. Fortunately, she was seen by the Child Development Clinic fairly quickly. Her diagnosis felt like the end of a journey, but we now realize it was only the beginning.

At the assessment & diagnosis appointment, we were schedule for a “Let’s Get Started” appointment – an introduction for parents to this new world. The earliest date available was 4 months away!

Not wanting to wait, I quickly took on the task of learning as much as I could about autism and what services our daughter would need. I was ready to jump right in to work with her and give her the best start possible – after all, everything I read indicated that early intervention was vital and that the preschool years were the ones where the most benefit from services would be seen. It only took a couple of weeks for my enthusiasm to be met with reality. We were at a stalemate.

At the time of her diagnosis, we were referred to Children’s disABILITY services. At the beginning of March I received a call confirming that they had our file and that we were on a waiting list for a Child Development Counsellor and a Family Services Worker. No time estimate was given for the former, but I was warned that the wait for a Family Services Worker (the one who could refer us to other services, including respite) was currently 3 years for our area. So, we wait.

After diving into all of the information I could find, we were sure of which therapy option was right for our daughter and our family. The Floortime/DIR therapy approach would allow us to work directly with our daughter, build our relationship with her and naturally support her speech development – our biggest concern for now. Not wanting to wait for the information session on the choice between Autism Outreach & St. Amant’s ABA program a month later, I contacted Autism Outreach directly and submitted our application. We are now waiting to be accepted into the program and to begin to receive their training and support in order to work with our daughter ourselves.  So, we wait.

We were also referred for speech therapy through WRHA services and fortunately already have our first appointment set for the middle of May (just a 3 month wait). At the end of March, we received confirmation that we were on the waiting list for occupational therapy through Society for Manitobans with Disabilities – no timeframe given. So, we wait.

We are fortunate that I am at home and able to work with my daughter myself, using what information I can glean from other parents and from online sources. This is more than many families can do while waiting.

All we can hope for is that we will receive some guidance and support while it can benefit her the most! Until then…. we wait.

 

6 comments

  • sharon

    Hello Cheryl: Yes there is a wait for some services, but it is so wonderful you have time to be on the computer….researching taught me a lot about Autism, and that there are so many options and ways to help your daughter improve. One opportunity I read today is an RDI trial for 30 to 46 month olds which I myself would strongly recommend. It is through the Rehab Center for Children ph # listed for this is 204-770-8875. If you read up on RDI therapy it’s wonderful and is a great start for your daughter. P.S. Write any time…….

    Sharon (One of MANY Autism Mom’s)

    • Di

      Cheryl, I am an RDI mum and I echo Sharon’s suggestion of getting involved with the RDI trial. You won’t regret it.

    • Deborah

      Actually, Sharon, the study you mention is no longer looking for participants. However, the RCC continues to offer parent training seminars as well as the Relate program.

    • Viviana

      We have used floortime and there are videos to learn about Greenspan methodology that can help, plus internet, of course. I found sometimes the floortime book is not enough, especially at the beginning (but maybe it’s just me).
      We also found very useful to use private services in addition to anything you can get in the system. Sometimes you get some of the services faster.
      Speech therapy, occupational therapy and music therapy worked for us. It depends on what your child needs. We had a great experience in speech with Maureen Doyle and in occupational therapy with Leslie Assor both in the way they work with the kids and with teaching/guidance for parents (I also used to stay in the sessions to learn unless it was not convenient for the particular session).
      If you can, complement with other services may help, even if you have access to the system services.
      At least that was our experience.

      I wish you the best of luck!

  • Cheryl,
    I can’t imagination the frustration you must feel in having to wait for services. I wanted to let you know of other options that may be beneficial. If you’re still waiting for Floortime or RDI, there are private hire speech therapists, occupational therapists and even art therapists in Winnipeg. Another option is music therapy.
    Music therapy is an allied health profession that uses music in a therapeutic way to meet a child at their level and work towards reaching developmental milestones etc through fun and enticing music-based activities.
    If this is something you’re interested in, please check out my website for more information about the services we provide. You can also check us out on Facebook, Google+, Twitter and Linkedin.

    I wish you all the best in your searches.
    Sincerely,
    Jaclyn D. Sorenson, MTA, MT-BC, NMT
    Bang A Beat Music Therapy Centre

  • Abby

    Three years later, it would be interesting to hear a follow up on how long services had taken to come into place and how these wait times have changed/or not changed.

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