It's been months since my first blog post. I had every intention of writing earlier, but funny how life gets so busy and complicated, taking time to sit down and sort out and pour out my thoughts has been difficult.
In my last post, I was coming to terms with my daughter Jillian's Sensory Processing Issues, and with the incredible resources and help I've received thus far, things have gotten so much better. She amazes me how much she can handle now compared to last year. Things such as having her bare feet on the grass, getting water dumped on her and not reacting in a panic, playing in the sandbox, getting her hair braided, self-dressing, and most importantly, her self-regulation has improved tremendously.
What I didn't mention in my last post was that I had been on a waiting list since before Christmas to have a diagnosis given to Jillian. I came to this decision not because I wanted there to be something wrong with her, but I knew that if her Sensory Issues got officially "identified" by a professional, then it would ensure she would receive the extra help she needed in the school system.
I must add that Jillian, along with her twin brother and sister were born at 34 weeks (give or take a few days), and because of this, their development has been followed since birth by the various agencies in Guelph that help with Speech, O/T and Child Development. I have in the past year had help from a wonderful Infant Child and Development Consultant through Trellis in Guelph (now called the Canadian Mental Health Association), who has helped guide through this process. We had many discussions about Jillian, and she has been her school to observe her in the classroom setting a few times. She advised me that I could have Jillian put on a wait list to be diagnosed by a Developmental Paediatrician from McMaster Hospital who also works with Kidsability here in Guelph. Also, her younger brother Nathan (one of the twins) had been getting help in preschool due to his social and communication delays. Although I did not have as many concerns for Nathan due to the fact that he was not quite 3 years old when put on the waiting list, and thought things might improve with maturity and speech help, I wanted him to be evaluated also. I felt that it would be better to intervene sooner than later so that more help could be provided to him.
So, fast forward to May 8th. That was the day that the Paediatrician observed both Jillian and Nathan, separately. There was a team assessment involved which included a parent interview (me), child care observation (at their respective schools), informal play session with a speech-language pathologist and a clinical coordinator at Trellis, physical examination and review of medical history. This was an exhausting day for me (my husband stayed home from work that day to look after Avery while I was with Jillian and Nathan).
I was relieved when the day was finished, and was told that we would follow up with the Developmental Paediatrician b on May 23rd for the results. I can't speak for my husband, but I was very anxious leading up to that day.
When we sat down with the Paediatrician, she started with Nathan, and I was semi-surprised to learn that his profile was consistent with a diagnosis of High Functioning Autistic Disorder. I remember my husband and I squeezed hands at that point. She very graciously explained how she came to this diagnosis, and let us know that we could evaluate him again in a year's time and if there has been a marked improvement, the diagnosis could perhaps be taken away. Then she moved on to Jillian's assessment. (Another hand squeeze). I was sort of expecting a diagnosis of Sensory Processing Disorder, but were told that Jillian without question met the criteria to be also diagnosed with High Functioning Autistic Disorder.
At this point, you might be surprised to hear me say that a weight was lifted from my shoulders. We now had answers and could move forward. I was quite relieved to learn that because both of our children are high functioning, that with treatment, they could function in the world quite well, and lead relatively normal lives.
We left the appointment in a fog, and I must admit that has stayed with me to this day. However, both my husband and I agree that this will not change how much we love our children, and I look at this as a gift for us as a family to grow together, learn from each other, and celebrate that God has created us just the way they were supposed to be. I have hope that I will learn to be a stronger person who has been given this opportunity to advocate for my children, and to help others as I have been helped.
One final thing I must say before I end this blog. I have met some of the most generous, supportive people this past year. Each person I've met has had their own unique challenges with their children, but had arms outstretched to me in support and good will, and for them I thank and hope we can be there for each other going forward.
