My name is Sarah, and my husband Greg and I have two kids. My son Ben just turned four and my daughter Emily is six months old. Greg grew up here in Abbotsford and pastors at a local church. I moved here from Tsawwassen for school in 2007 and was an Education Assistant (EA) until Ben was born. I hope to go back to working as an EA someday, but for now, I am a stay-at-home-mom and I definitely have my hands full!
Our Autism Journey
When Ben was six weeks old he started to have focal motor seizures. Before the seizures started we had some other concerns about his development because he wasn’t really making eye contact or moving his limbs much. So when the seizures started we knew something was definitely going on in our little boy. We were admitted to BC Children’s Hospital for a week filled with all kinds of testing. When all the tests came back normal, they sent us home with seizure medicine and told us that he would likely grow out of them. Two weeks later he started having more seizures despite the anti-seizure meds. After another week at BCCH. and a new anti-seizure medication to try, we were sent home to await the results of some genetic testing. A few months later, in November, we received a difficult phone call informing us that Ben had a chromosomal abnormality called 1P36 Deletion Syndrome, which would significantly impact his health and development. We visited many specialists in those next few months and were told that Ben would never walk or talk and that he would need care for the remainder of his life. There was a whole list of potential medical problems included with his diagnoses and we were told to “just love him as he is, but not expect much from him”. These words lit the flame of advocacy in us!
Once we had the diagnosis we were connected with the Fraser Valley Child Development Centre and had physical, occupational, and speech therapy for him in our home. We found a support group on facebook for families with children who had 1P36 and these people soon became like family. Through this group, we heard about an annual conference and were able to attend when Ben turned 2. It was at this conference that we first heard about the connection between 1P36 and autism. At this point, Ben was not displaying any autistic characteristics, but we knew it was a possibility in the future.
Ben’s development is significantly delayed, however, despite what the doctors told us, Ben took his first independent steps at age 3 and began communicating with us through pictures and signs. It was also around this age that Ben started to show some autistic characteristics. With my experience as an Educational Assistant, I noticed these signs right away and got him on a waitlist to be assessed. He was assessed in November of 2017 at SunnyHill where he received his official diagnosis. I remember sitting in the room with the pediatrician wondering why there was kleenex on the table. When he told us that Ben had autism we were very relieved as this meant we would have access to more support for him. The doctor looked a little bit puzzled when he saw the relief on our faces and said that it was not the response he was used to seeing (hence the kleenex), but we had known and suspected this for a while. Unfortunately, there is little to no funding for conditions like 1p36, so an autism diagnosis was great news for us.
Ben is currently connected with the Fraser Valley Development Centre and has an Occupational therapist, Physical therapist, and Speech Therapist there, however, he only sees them a handful of times a year. We recently started an Early Start Denver Model therapy program, which he receives three days a week in our home under the direction of a Behaviour Consultant. Another lesser-known therapy that Ben has done for a few years now with great success is the neuro movement therapy called the Anat Baniel Method (ABM). He has one block (two sessions a day for three days) each month, and we always see progress after each block (For anyone interested in more info on ABM I recommend reading ‘Kids Beyond Limits’ written by Anat Baniel). We are just about to start Hippotherapy (therapy on horseback) as well, and we are excited to see how he can benefit from it. With all of these different therapies, our calendar is very full!
Our greatest desire for Ben is that he would enjoy his life, have a sense of belonging, and ever-increasing independence. Our goal is not that he would become more “typical” or meet our expectations, but that he would gain the necessary skills to enjoy his life and reach his full potential. We often ask ourselves, “Is this going to make his life better, or just ours?” At the moment, this means prioritizing things like communication and social skills over some life skills like potty training or tying his shoes. Of course our long-term goals would include independence in these life skills, but more importantly, we want him to have meaningful relationships.
With Ben’s busy therapy schedule and having Emily join our family, balance is definitely something we are still striving to find. Thankfully, Greg’s work hours are flexible, which allows him to be home when he is needed. This means he can work from home from time to time and attend important appointments with us. It can be difficult to get away just the two of us in this season, but we try to find small chunks of time to do things we enjoy together. Having a child with autism makes finding babysitters more difficult, but we are very fortunate to have supportive grandparents and a neighbour that help us out regularly. It’s so easy to get into a rhythm that works for the family that we forget about some of the less pressing parts of life like hobbies, exercise, and dates. But, without these self-care practices, it is all too easy to burn out and grow apart. We try to prioritize these things, but there is always room for improvement!
Overcoming Difficult Times
There have been a few seasons that have been particularly difficult, but, through our faith in Christ and His mercy for us, we always seem to come out the other end stronger. Our time spent at BCCH when Ben was a baby was difficult because it was hard to watch him suffer and we feared the unknown, but I think receiving his 1P36 diagnosis was probably the most difficult. It was a relief to have answers, but the grieving process was long and hard. It came (and continues to come) in waves with each missed milestone and health challenge. It was difficult to accept that there likely won’t be weddings or grandbabies and that we will most likely be caring for Ben long after our friends are empty-nesters. A book that we read together during this time called The Life we Never Expected by Andrew and Rachel Wilson, really helped us navigate through the grieving process. In it, they shared about their own experience raising two children with autism, and it made me realize that grief is okay. I kept telling myself that I should be thankful: that he was as healthy as he was, and that the seizures had stopped, and that he didn’t seem as severely impacted as some of the other children with his diagnosis. But the book helped me realize that you can grieve the loss of expectations and be thankful for what you have at the same time. God has answered many prayers, has provided us with a great church community, and we sense Him carrying us through this journey.