"Mom, I happy!"

 

So here it goes, our update on Isaac's assessment at the Glenrose. I have been thinking lots about this post for almost a month now. It has been hanging over me as I try to figure out my feelings and the right words to describe them. This may be a long post but I do want to capture and remember the details for ourselves in years to come. I have kept up with this blog since 2008 and initially started blogging to keep family on the east coast up to date with our lives. But now I realize it is something I do for us, for our family. Each month as I scan pictures and choose what ones to put on the blog I reflect, and realize how blessed we are and how much I love our kids and my husband. We have such a great life and so much to be thankful for.

In previous posts about Isaac and our concerns, I had commented on how this may have been the beginning of a journey with Isaac, this post about the Glenrose, is a continuation of that journey. A journey....aren't we on a journey ourselves? and aren't we on a journey with each of our children? One thing I have really discovered in the last month is that no matter what comes up with our children we don't know the future, whether it is special needs, or wild teenagers, or health issues, we are all in the same boat taking things one day at a time. God tells us not to worry about tomorrow in Matthew 6:34. "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own."

Okay onto Day 1 at the Glenrose.

 On Monday December 8 Isaac and I had to be at the Glenrose for 8:30am for Day 1 of his PAS (Preschool Assessment Service). I had been preparing Isaac for this for a few days prior telling him we were going to go to  a different school for a few days and that there would be nice teachers there. He was enthusiastic, excited to pass trains along the way there, happy to drive into the parking garage and happy to ride a few elevators as we found our way to the Admitting desk.

We were put in a waiting area that had some building blocks and different toys for kids to play with. A few other parents with little ones arrived to the waiting room while we were there. Of course I observed the other kids trying to see what issues they might be having. One little boy played with an I-pad the whole time, and one little girl came in and sat pretty close to her mom and didn't do much of anything, then a little boy Isaac's age came along and joined Isaac with the building blocks. So far so good...Isaac seemed pretty average to me.

 

Soon the Psychologist (Cherie St. Pierre) met with us and took us to an assessment room. Right away she started quizzing Isaac with picture books and asking him questions. I had to fill out  an 8-10 page behaviour questionnaire while she worked with him. I really wanted to just observe everything and watch these experts do what they are good at. The questionnaire was a bit hard. We have done a few of these since we began this journey with Isaac and they always seem so subjective. You have to rate them on a scale of 1-5. I'm usually stuck on some questions and have always valued Ken's input or confirmation on my answers. I handed it back to Cherie after awhile and told her, "Yes Isaac can do many of these things on the questionnaire, but he needs a lot of prompting and encouragement, and praise throughout tasks." I have to admit that I'm not always sure what he is capable of, since I have been helping him for so long, to decrease his frustration and to help prevent meltdowns.  I often am in a hurry doing things because we have 5 kids. One thing I have been learning about myself the last few years is my parenting style as well. I tend to want to do things for the kids and don't always have the patience to help them through every step. It's just quicker if I do it for them.

 

I snapped this picture of Isaac in the waiting room Day 1.

 

After Cherie was done her assessing we talked for a few minutes. She asked me if I had any questions. I asked how Isaac was doing? I could tell he was trying hard but I could also see him not understanding what she was asking quite often. Instead of being disappointed that he wasn't doing so great I tried to remain positive. He was here to be assessed, this was hopefully going to help us determine what he needs to do better. It wasn't my job to put on a show and brag about him and expect him to behave perfectly. So far I felt like they were seeing who Isaac truly was and where he was at. I didn't ask too many questions, I was scared to hear too much, too soon. I just really wanted them to assess him and give it all to me on Day 3 when Ken was with me, and when they were done assessing him. I have seen him do many assessments in the last few years and perform below average on most of them so this wasn't anything new to me. The last thing I discussed with her was a list of odd things we had observed about Isaac in the last month. I had been keeping a list to share with them. Often when put on the spot it is hard to recall all of our concerns without making notes. A few of these things were regarding his obsession with numbers, watching his shadows very intently, and his intense focus on some things- like playing with a marble and rolling it across the floor for over an hour while being babysat, or noticing one ceiling fan out of 20-30 at a skating rink that wasn't working. I mean who notices things like that, especially when there are kids skating everywhere, it's loud and you are just trying hard to stay on your feet on your skates. She thanked me for all my input and we made our way back to the waiting room.

 

Next we met with Patricia LaBerge a speech language pathologist. Isaac has now worked with 5 different speech pathologists in the last few years so I am getting more and more familiar with their techniques and their terminology. I have learned so much from these ladies he has worked with and have incorporated a lot of their strategies and techniques into our everyday life at home. Some of these ladies have really inspired me and have helped spark an interest and passion in me to want to learn more. I've networked as much as I can, so I can be a real advocate for our kids. Patricia was great too and Isaac was comfortable right away. A lot of her assessing had to do with toys,  role-playing and using your imagination. She would have various toys in a bag, dump them all on the table and just observe Isaac's reaction. She would wait and see if he initiated conversation or describe toys. Of course he was drawn to any kind of car or anything with wheels and would just drive it around. Often the dolls, or animals  would be left untouched on the table.  Another thing she did was put a small wooden block on the table and tell Isaac numerous times that it was soap (she also gave him a facecloth). Then she asked him to use the soap and the cloth to show her how he washes his face. He just stared at her blankly. She tried a few times, again no response...I interrupted her to tell her that we use a soap pump when he washes his hands so he probably doesn't understand the bar of soap. Was that helpful to her?...not really, but it was an attempt by me, the mom, to defend him. By this point Isaac was starting to get tired and kept leaving the table and coming to me. I offered to go out of the room if it was easier (I saw that there was a double way window on one wall that I could observe) but she said it wasn't necessary. Throughout this assessment Isaac would often look at me or come over and tell me he wanted to go home now or ask for his blankie (silly blankie, he only takes it to bed now but I thought if he does have a meltdown it would definitely help him calm down). Again I was asked if I had any questions and I refrained from asking too much. Isaac was done and so was I. It was only 11:30 am but we were ready to leave.  Day 1 done.

 

 Day 2: I took my journal along and read some comforting texts while we waited in the waiting room. This time we didn't have to be there until 10:30. We would be meeting with Physician Dr. Dosman. Right away when she came to meet us she paid lots of attention to Isaac. By Day 2 he knew where the elevator was and was really wanting to go in the elevator again. He remembered the numbers and the buttons he got to push. He told her about it as we went to her office. Right away she did an examination of him, his weight, height, head circumference. She observed him walking and running in the hallway, took his temperature, checked his ears and his tubes. He was really good and is quite used to doctors by now. Then we talked and she asked questions, family medical history, birth and delivery, pregnancy, medications. More questions about behaviours and concerns. She took lots of notes and asked lots of questions. I was surprised that she wasn't assessing Isaac more but she told me she was still observing him while we talked. He played with toys she had, but he would get bored once and awhile.  Then he'd ask when we could leave, and she would distract him with other toys. That was it, we were done the assessing. We rode the elevator up and back down before we left as a treat for Isaac and then we headed to McDonalds for some lunch.

Lunch date with Mom only. This never happens!

 

 

After lunch we drove the half hour drive to go get Emma and to head home. My head was racing as Isaac sat in the back. Did I tell them enough? Maybe I should've prepared more questions. Did I make the most of my time with these professionals? Did they get an accurate read on Isaac? What was going to happen tomorrow? Would the outcome change our lives? Have I been doing all I could to help Isaac so far? I was really scared of the unknown. All of a sudden Isaac pipes up and interrupts my thoughts by saying " Mommy, I happy!" I seriously burst into tears. How did he know that I needed to hear that? And what perfect timing! Really, that's all that matters right? Isaac is happy, he has a great life, and he is so loved and knows it too. No matter what would happen on day 3, Isaac would still be happy, and is happy, and nothing they could say would change that. It was exactly what I needed to hear to put things into perspective for me. In the days ahead it is all I needed to remind myself of...Isaac is happy.

Poor little guy was pooped.

Day 3: We made arrangements with SIL Trixie to have all our kids so Ken and I could go to our final meeting.

 

The above diagnosis places Isaac on the Autism Spectrum. Autism.  That word that was thrown around a bit the last few years during assessments, but usually it was people telling us that he did not seem autistic, and that he puzzled a lot of professionals.

We sat in Dr. Dosman's office for over an hour discussing past observations, future plans, and what supports would be available. It seemed strange, how were we supposed to respond to this information? How do others respond in this exact office while they hear a similar diagnosis? I didn't cry. I just remained positive and asked lots of questions. One of them: " Are you sure? You only spent a few hours with him in total?" Response: " Yes we are sure, this is what we do." I proceeded to ask if he was high functioning? He is verbal, he is affectionate, he does learn, he doesn't flap his arms around or anything like that. Could they be wrong? On a scale of 1-3 they rated him 2. Ouch. Hard to hear? Yes.

I had lots of questions about B6, Iron, vitamin D, diet, gluten intolerance, window of regression, different programs. Dr. Dosman at one point stopped me and said, "You ask very astute questions Shelley." I shrugged. To be honest I had been reading books about autistic children and families for a month prior to the Glenrose assessment. The Lord was definitely preparing me for what was to come. I remember after reading a few books on autism saying to Ken, "Why am I doing this? Reading all these books on autism?" I now know why.

 Well, to sum up our meeting we left the Glenrose with lots of phamplets and reading material. This picture captures Isaac's files thus far. It's about 3 inches high.

 



This is a thick book of a Hanen workshop for autistic parents to attend that comes highly recommended. I'm reviewing this book currently but signed up for a course called talkability which is supposed to be more at Isaac's level. This workshop and book is specifically for autistic kids.

My reading/library list on autism books so far. 

 

It is now just over a month since Isaac's Glenrose visit. We are in learning mode, reading lots of books and trying to figure out the best way to help Isaac going forward. It has been pretty up and down the last month, but we can definitely see God's hand guiding us through this. I've been really busy networking with different autism clinics in Edmonton, and signing up for different workshops. I have also been introduced to two wonderful moms, in our churches in Edmonton, that have autistic sons who are older then Isaac. One of them came to visit me last week, and the other one is coming this week. Just having someone to relate too has been so helpful, and to share ideas, resources and experiences. I've also touched base with many of the supports we had in Coaldale/ Lethbridge that we've worked with the last few years and they are super encouraging and supportive too. Isaac's character, and his eyes, and his smile have touched a lot of people already in his life. We have so many rooting for him. Thank you to all of you who have supported us and encouraged us so far on this journey. We are so grateful for prayers, hugs and encouraging words and to just have someone to listen with a caring heart.

 

Phil 4:13 " I can do all things through Christ who strengthens me."