Autism in the Family
I'm taking a deep breath as I'm starting this blog post. Our youngest was diagnosed with Autism Spectrum Disorder (ASD) over three years ago.
This is not the first time I've spoken of autism in the family but in the past, I've only done so if the topic came up or if someone asked. I'm not embarrassed, sad, anger or anxious about it but I have to admit that I was reluctant to place a label on my child that may follow her for the rest of her life and I feared others would see and treat her differently.
The truth is, I know that she is different and will always be different. Hopefully, people will see her as the affectionate and happy child that she is. I've accepted that the autism label is necessary for us to get her the support she needs to be successful in life. I'm not going to go into too much details about our family's experience otherwise, this post will be at least 10 pages. My husband lately commented that I like to share N's entire life story when we had our kindergarten intake meeting.... I felt I needed to justify how she has progressed and what we needed to still do for her. I'll share more of our trials on autism in later posts.
In this blog post, I want to share what I would have liked to have known when we started this change in our lives. I'm going to focus only a few things I think can be helpful for new parents, especially those with young newly diagnosed kids.
Before we even got our diagnosis, we contact the location community support group. For us, it was the Burnaby Infant Development Program - they help children up to age 3 and offers programs that include play groups, swimming and social events. Our IDP worker was great in providing advice and guidance for us to get diagnosed, navigate our relationship with government, and getting involved with the community as well as parents who have autistic kids or seeking diagnosis. From there, we were in contact with BC Centre for Ability (BCCFA) and Supported Child Development (SCD). There are equivalents in all municipalities. These organizations provided help with speech, physio and occupational therapy as well as training workshops on eating, toileting and sleeping. All services are free.
If you suspect your child is on the spectrum, you can ask your doctor to refer you to a private clinic for a screening/consultation with their in-house pediatrician (such as at Able Clinic, Monarch House and Asante Centre). It's one hour and FREE with your MSP. It beats waiting 6 months for your doctor to refer you to a pediatrician. The information you get may help you decide whether to pursue an ASD diagnosis for your child.
If you have extended health benefits through your employer or can afford to pay privately, DO IT. Here are my two reasons why. One, the wait is about 12 months from when your doctor or pediatrician refers you to Sunnyhill Hospital (BC Children's Hospital). We waited only two weeks to get diagnosed privately. Two, the 12 month wait means your child is not getting help during this period and the money you get from the Ministry of Children and Family (MCFD) $22,000 allotted to their therapy is lost. Evidence in autism research shows that intensive early intervention is key to provide your child with opportunities for success in life.
Once you have your diagnosis and report, apply to MCFD for funding right away. It will take a few weeks to process before you can get funds.
Building Your Own Behavioural Intervention Team
Not everyone has the time to manage their own behavioural intervention team, and may choose to go with a centre for services. Centres will take all your monthly allotted funds and provide 10 hours of therapy to your child through a behavourial interventionist (BI). This does not include one-on-one speech, physiotherapy or occupational therapy. These specialists along with the behavioural consultant may be consulted once a month but nothing with your child unless you pay separately and in addition. Personally, I'm not a big fan of centres.
Building your own team does take time and effort on your part but it's well worth it once everything is up and running. Instead of the 10 hours of therapy a week, we're about to double to 20 hours a week for our child and this includes one-on-one speech therapy, physiotherapy and occupational therapy. We also have two BIs and a behavourial consultant (BC) who runs and modifies our child's program. With 20 hours, we feel that it's closer to meeting the INTENSIVE in the 'intensive early intervention". On top of these 20 hours, as a family, we also incorporate intervention and learning in all aspects of our lives.
Hiring your own team which may consist of a BC, possible 1-2 BIs, a speech pathologist (SLP), an occupational therapist (OT), and a physiotherapist (PT). I 'm offering info on the hiring of BIs. Here is what I use and you may find helpful as a starting point: BI job posting, potential interview questions and potential reference check questions.
I also have a spreadsheet that helps keep track of my MCFD funds, invoices and who gets paid what when. Parents are responsible for where the funds are allocated and it's good to keep records in case you get audited by CRA (yes, that's us for the past 3 years now - another story, another post).
Start with BIs
You'll find that there is much demand for specialists and you may have to wait 3-6 months for your BC to start with your child. Use this time to hire your BIs and bring them on board early. We started with our BIs first while waiting for our BC to start. Our BIs spent time with our daughter getting comfortable and working on a few simple things. Our BIs worked on requesting and eye contact with our daughter. Simple but effect in gaining her attention and getting her ready for when the BC starts. This allowed our BIs to implement the BC's program right away as our daughter was already comfortable with our BIs.
Learning About Autism
There is so much to learn, it's very overwhelming so here are my faves to get started.
I'm ending this post with really one main suggestion: DON'T WAIT. Early intervention is what your child needs so be proactive, and be pushy if you must.
Don't wait for your doctor to refer you to a pediatrician - get a private screening or consultation. Or ask your pediatrician to call if there's a cancellation, and then make sure you take the cancellation as your top priority and go.
Don't wait for Sunnyhill if you can afford it - get a private diagnosis.
Don't wait for your Behavioural Consultant to be available before starting your child's intervention - hire BIs and get started with simple things like getting to know each other through play or practicing requesting and eye contact. Again, ask to be contacted should there be a cancellation to see your BC and get started sooner.
Don't wait for others to bring success to your child - get involve in the intervention program, get training so you can provide intervention, and get your family members, friends and neighbors involved because at one point or another, you'll need them to support you. We are so ever grateful for the help we have from our family, friends, neighbors and community.