Tuesday, February 1, 2011


It's time to blog again. After 15 months, I've missed blogging, and today is the day to break the silence.

My title is simple - Sara. My sweet girl, who will be 10 years old in just 3 weeks! About 18 months ago, I shared how much I was concerned about Sara. Concerned about her learning challenges, which seemed to get worse with each passing month. Concerned about her social skills and the odd behaviours that caused her friends to reject her on many occasions. Concerned that maybe she was on the Autism Spectrum Disorder. And desperately wanting answers.

If you remember, Sara was given a full psycho-educational assessment during the summer of 2009, by Dr. Susan Peacock in Edmonton. The information gained was helpful in understanding Sara better. Sara was also diagnosed with Irlen Syndrome, by Susan, and received her coloured glasses a few months later. (The website www.irlen.com explains this syndrome very well.) Shortly after the assessment was completed and Sara finished the process to pick the colours for her Irlen glasses, we experienced another major move. To Kamloops, BC. (November 28, 2009) Wow! It threw all of us for another loop! In the middle of all the fuss, I lost sight of pursuing any sort of autism spectrum diagnosis. We hoped and prayed that the new Irlen glasses would make a significant difference in Sara's ability to learn in school. It did help, but the difference was not significant enough to help her catch up to "grade level." They seem to help with her mood, more than anything, which is a wonderful thing!

Fast forward to this past September (2010), the beginning of a new school year. For the first time in 3 years, we were not planning or experiencing a major move! Yay! I will spare details, but things were worse with Sara's learning curve. I felt we were losing ground everywhere I turned. Sara was having meltdowns on an almost daily basis and her new friends were beginning to grow weary of her odd behaviours. I was at my wits end - nothing was going well.

This year we decided to enroll our kids with HCOS, in Kelowna, having heard of their excellent service to homeschoolers and special needs department. The contact teacher we were assigned with, Louis, has been a wonderful advocate and help to our family. He listened to my concerns, realized we needed an intervention and got the ball rolling with finding some answers. It all happened so fast, we were nearly breathless! After a particularly emotional phone conversation with Louis, on Tuesday, November 2nd, Louis met with others at the school that same day about our situation. He then arranged to drive up and meet our family on Thursday, the 4th. After observing Sara's schoolwork and behaviour, we discussed what to do. The public school testing would leave us on a waiting list, that could take up to 3 years - just to get the process started! OR...we could circumvent that whole thing and get Sara privately assessed in Vancouver. And HCOS would book the appointments AND pay for them! All we had to do was pay for the trip. That was a no brainer! Louis left with encouraging words and a promise to set up the appointments the next day.

The next day was Friday, November 5th. I left the house with the kids early in the morning and we were gone the entire day, coming home at 5 p.m. After I got supper started, I noticed there were phone messages. Louis had been trying to contact me all day with some very exciting news! The specialists in Vancouver that Sara needed to see had a cancellation and could see us much earlier than expected - like Monday, November 8th early!!! Wow! I was overwhelmed. Joshua's boss was very kind and understanding about giving Joshua that Monday off. We packed our bags and the whole family headed to Vancouver on Sunday morning.

On Monday, Sara had 2 appointments. In the morning, she was assessed by a speech and language pathologist from 9 a.m. - 12 p.m. I could tell Sara was quite nervous about everything, not really understanding what was going on or what was expected of her. It was hard to reassure her because I didn't know what would happen in these sessions either! She held herself together quite well, but was more timid and quiet than usual. The speech and language pathologist was very sweet and worked hard to put Sara at ease. I filled out a lot of paperwork while Joshua and Sky hung out at the HUGE Chapters bookstore down the street. Later, the 3 of us ate lunch at a Vietnamese noodle house (we took back a sandwich for Sara). There wasn't much time before the next appointment at 1 p.m., with Carmen. This was the Autism Spectrum assessment. 3 1/2 hours later, we were all fried. The first 2 hours was question after question for Joshua and I. Just about everything you can imagine was covered. It was hard to remember all the way back to the baby and toddler days. I'm a detail person, so I was O.K., but Joshua was about ready to jump out of his skin! The kids had to entertain themselves in the waiting room under the watchful eye of the receptionist. They did pretty good considering the length of time and what we were all going through! Sara exhibited some of her odd behaviours while she was waiting, which was good, because the receptionist then relayed that to Carmen. Then, it was Sara's turn and she spent an hour alone with Carmen, who put her through a series of tasks to assess her behaviour and conversation. Sara was a little trooper and I was proud of her for all her hard work that entire day. We celebrated with a nice supper and then drove home to Kamloops.

Now it was time to wait. We received the speech and language report after just 2 weeks. The results surprised me, although I didn't disagree with anything stated in the report. She scored very low (1%) in just about everything. I guess you just get used to the way your child is. It left me feeling like a bit of a failure and not sure what to do. I still don't understand a lot of it. We do have a friend here who is a speech therapist and he has agreed to meet with us to help us with our questions. Things just got busy over the Christmas season and we've been battling sickness for 2 months now, so the meeting is on hold. Sara will definitely benefit from speech therapy, so that will be part of our near future.

We had to wait much longer for the autism report. It finally came through this past Friday, one day after coming home from our recent vacation to Cancun, Mexico. Carmen e-mailed the report for our review and approval. I read through all 15 pages and was surprised at how little emotion I felt. I think most of my strong emotions were happening before this process began, when I felt like there was no hope. Now, I feel hope. The information in the report and the diagnosis don't actually change anything, but it gives us the springboard to go forward. Sara was diagnosed with mild ASD (Autism Spectrum Disorder). The diagnostic label for that is PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) Sounds fancy, eh? Actually, it sounds more vague than anything. But, this diagnosis allows us to apply for government funding, which in turn allows us to pay for the therapies Sara will be able to benefit from (speech therapy, behavioural training, special curriculum for school, etc.).

So, now we have our answer. I feel remarkably calm and peaceful about everything. It doesn't take the challenge of daily life with Sara away, but it helps us understand it. And hopefully this helps others understand her as well. I don't expect pity or to be able to excuse wrong behaviour, but I do hope that others can be more compassionate. Sara is such a sweetie, but she can also make people feel very uncomfortable at times. Knowing that she is different and that we are working on it, will hopefully help others to extend a bit more grace and be able to relax around her. If you are one of my new friends in Kamloops, you will know exactly what I'm talking about. If you have any questions or concerns, please know you can approach me at any time. It might feel awkward or embarrassing, but don't let that get in the way. You can explain this to your own children in whatever way you think they can understand. Let them know that if they are ever made to feel uncomfortable around Sara, that they can talk to you or even me about it. Our family wants to know what we need to work on! Thank you to everyone who has prayed and supported and listened through this journey. It's far from over, really, in some ways it's just beginning. We would really appreciate your continued prayers!


Nadine said...

Hi Peggy,
Happy to have you back!!
Oh what a long journey it has been for you guys...and you said that beautifully...it helps us understand our kiddos better so others can better understand them too and offer grace...I am amazed at how quickly you were able to get all this testing done...I will surely be pushing for more after what you have written...
Thanks for sharing...
and yes Sara is a beautiful child I can see that shine through her....

Let's keep in touch!
I snail mailed you today...



Nadine said...

oh my...I just looked at the Irlen site...wondering if this would help my boys?...so expensive ugh....
Going to call the Red Deer lady for more info...

Thanks for sharing


Tamara said...

I will be praying!!