Sara

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!

Yesterday's Outcome

Yesterday was exhausting, hopeful, stressful, and encouraging all rolled into one big ball of emotions. I'll try to be brief.

The doctor:
- I didn't like the unattractive, poorly lit office. Bad vibes right from the start.
- The doctor was rude to Sky right off the bat. She (the doctor) asked Sara what grade she was in. Before Sara could answer, Sky blurted, "Grade 2!" She looked at him, with no smile or teasing in her voice at all, and said, "Are you Sara?"
- I was informed on the phone that this appointment was strictly for meeting the doctor and gathering family history. I kind of hoped that we could address the autism issue a little, but after telling myself that probably wouldn't happen, I left my list of concerns and symptoms at home.
- I was forced to explain all of Sara's "faults" while she sat right next to me. My heart was breaking and I was stumbling all over my words, trying to say things with as many big words or vague terms so that Sara would be spared as much as possible.
- The doctor was obviously not a big fan of homeschooling. I didn't like the tone of her questions, especially the ones about socialization.
- I left with a requisition for a urine test at the lab (Sara still has daytime bladder control problems quite frequently) and the referral to a neurodevelopmental clinic.
-I also left wanting to cry, but I found the courage to paste on a smile and stay upbeat for Sara's sake. Poor kid. She didn't say much, but I can only imagine how she was feeling. I know I felt like an idiot.
- The referral is the one good thing I got out of the visit. I have to fill out a couple of forms, return it to the doctor, who will then send it to the neurodevelopmental clinic. She said the clinic would probably not give me booking until we had the results from Sara's academic assessment back. I'm getting Shelley's help with the form (my friend who worked with autistic kids).

Interview with Susan Peacock:

- Completely different atmosphere - my nerves were soothed immediately.
- When Susan came out to call us into her office, she looked straight into Sara's eyes and kindly said, "And you must be Sara!" That was not lost on me.
- Her first question was, "Have you explained to Sara what we're doing?" Her concern for Sara as a little person was very evident.
- The conversation with Susan was easy, relaxed and full of hope. She wanted to know the struggles, but she also wanted to know Sara's strengths.
- She wrote everything down which showed me that she cared and that she was going to be thorough. She never made us feel stupid for anything we shared. If it was important to Joshua or I, she made it important to her too.
- Susan affirmed us as parents and as Sara's teachers. She said something very early on in our conversation that I will never forget. She said, "Because you are homeschooling Sara, you are already 99% ahead of all the other (schooling) options out there." I think Joshua and I both really needed to hear that from an "expert." I was so encouraged with how pro-homeschooling she was.
- She assured us that at the end of this assessment, we would have answers and would be equipped with tons of ideas and suggestions to help Sara as we continue to homeschool. She was incredibly positive and we so needed that as a family.
- Sara's first one-on-one session with Susan is next week on Tuesday, at 10 a.m. She's going to try 2 hours to begin with, and see if Sara can handle that much. If not, she said we can cut the sessions back to 1 1/2 hours or even down to 1 hour if we need to. Our total number of hours with Susan will come to about 11 hours, so we'll just get there at the pace that's right for Sara.
- Sara seemed comfortable enough with Susan. A little shy, but that's to be expected! Joshua and I laughed on the way home, because by the end of the hour with Susan, Sara was exhibiting some very ADHD symptoms! Being cooped up in an office for an entire hour with nothing much to do, except listen to adults talk, will do that to you! I talked to Sara at bedtime. She said she liked Susan. I told her that if she felt nervous about anything or had questions that she could talk to me about it anytime.
- The beauty of this assessment, as Susan explained, is that it really doesn't "matter" what or how Sara does with the activities and testing. She doesn't have to get everything right or meet certain goals. Susan just needs to find out how Sara learns and where the glitches are. Then, Susan shared that there are really two ways to deal with those glitches. You can either find a way to detour around a learning problem and get at it another way, or once you know what the difficulty is, you will know how to fix it altogether in some cases. She said there is rarely something that comes up that you would just throw your hands up and say, "Oh my, there's nothing we can do about this - we're just going to have to live with it!"
- Today, I'm so excited to start! Last night, the stress of the day, got the better of all of us. Sara had a meltdown at suppertime. In the midst of trying to resolve that, Joshua and I ended up at each other's throat's (I know this NEVER happens at your house!), so the rest of the evening was rather tense. I woke up feeling terrible. I finally let the tears come - the kind that almost make you throw up... After venting to my dear friend, Karen, on the phone, I feel much better! Thanks Karen, for listening!

I want to thank each one of you, again, for the incredible prayer partners and support you have been to me (us). For those of you on Facebook, who have sent me long messages, thank you! I will reply to each one of you, but it's going to take me awhile to get to all of them. I have been so encouraged and I feel very loved by each one of you who have taken the time to read my epic posts and even care about them!