So we have had a few days to let the weekend "sink in" and I have a few minutes so I thought I'd share a bit more of how the weekend went. The love and concern from all our family, friends and work families ( although for Mark, I guess that IS mostly family:) has been absolutely overwhelming and we know you all want to hear more of the details.
Let's start with the assessment with psychologist, Dr. Reg Landry. We weren't sure exactly what to expect, I mean I am a Reading Recovery/ Resource Teacher so I have some experience with assessment, BUT nothing really prepares you for taking your own child to see a doctor that will confirm that your child has autism. And like I said, we knew he had it, but the spectrum is so broad that we didn't know for sure where he would fall...lately we have seen a lot of progress, but the psychologist said it best when he said that "autism is not so much about what you see but rather what you don't see". And for Porter, he is missing language and that reciprocal communication that we all take for granted. It isn't just that he isn't speaking very many words, but he doesn't really attempt to communicate in other ways either.
Most of the assessment involved observing Porter play and Dr. Landry attempting to interact with him. Like for example, Dr. Landry would put something that Porter was playing with out of his reach ( but made sure he could see it ) and most typical children will look at you or point or do something, but not Porter. He just moved on to something else. He also asked us to call his name several times to see if he would look up at either of us, and he only did once. I think he realized we didn't have anything he wanted so he simply moved on. He also tried playing one of those pop up toy games with Porter. You know the ones where you push a button and something pops up. He would let Porter hit the button then immediately he would push the object down again. He must have done this at least 20 times. The typical child would get annoyed and look up or say something to indicate as such, but not our boy, I think he would have lasted at least another 15 minutes. It's funny what you think...in my head I was impressed with his patience and I wanted to say " stop that, you're making ME frustrated! :)" But later, as Dr. Landry explained, it shows he has a real lack of that back and forth communication that is at the heart of all social relationships. One more example, the doctor took a toy plane and flew it around and made fun flying noises. He made it look like so much fun I wanted to join in, but when he gave it to Porter, he went straight for the propeller and took great delight in spinning that little thing around and around....have I ever mentioned his LOVE of wheels and anything that spins?
Those are just a few examples of some of the activities that he preformed with Porter. The rest of the assessment was spent talking with us and just simply observing Porter. At the end of the day Dr. Landry went over his observations with us and gave us his diagnosis ( Classic Autism on the severe end). I must say, the man was made to do this. He was kind and gentle and shared his observations in a very positive manner. But I will admit, the words "severe end" did punch us in the guts. After those words it was hard to focus on anything but simply keeping it together , but he did offer us some insight to Porter's sensory needs as well. I remember because he explained it so well. He compared the way Porter often feels to driving in downtown Toronto. There may be 4 or 5 lanes of traffic, bright lights, signs and other distractions all coming at you at once, so you may find yourself turning the radio down so you can focus. Well, Porter often becomes sensory overloaded like that, but he has no way of "turning the radio down". I guess this is why he may flap his hands or repeat certain behaviors, it's his way of calming down. He also added that he did not do any cognitive assessments because they would not measure Porter's true abilities. Basically he meant that Porter would not be able to answer any questions, not necessarily because he didn't know the answer, but because he simply can't communicate yet.
So as I said, the words "severe end" did shock us and we both shed a few tears when we got back to the hotel, but then you just have to watch him and you realize he is still the exact same boy he was last week. The same boy that wakes up too early but cuddles right into when you take him out of his crib. The same boy that squeals with delight when you give him something as simple as a peach for a snack. The same boy that runs through this house with enough energy that you can get tired just watching him! The same boy that giggles with laughter at the intro to Rolie Polie on Treehouse. The same boy that loves Thomas the train. The same boy that tries so hard to speak but his voice just isn't ready yet. The same boy that we love more than life itself.
And you know what else, he's happy. I mean he really is happy. And just because society has made us all believe that we have to have certain things in life to be fulfilled, doesn't mean it's true for everybody. Perhaps Porter won't have a huge circle of friends, but you know what, he won't care! So why should we? Honestly, we are going to try really hard to just take things day by day. And today, we want our boy to communicate, in some way. So today, that is what we are working on, label or no label. severe end or not.
And despite a few tough moments, we really did have a great trip. We felt blessed to have met Dr. Landry and grateful that he was able to complete this very important step in our journey. On the way home we both said we almost felt a sense of relief that that part was over. I honestly have felt like I was getting ready for the biggest job interview of my life for the past month. So it was nice to just breathe....AND we were in beautiful Cape Breton , the weather was great and we were with our favorite little boy in the whole wide world! And the hotel had a pool, so I swallowed my pride, stuffed myself into a bathing suit ( gulp ) and went swimming! Porter absolutely LOVED the pool! I think he would have stayed in it all day if we let him. And he loved making pillow forts with all the pillows in our hotel room. He loved going for rides on the luggage cart and watching the wheels go around and around. And the elevator! Hello! What kid doesn't love an elevator? So it really was a great weekend all in all. We sure did miss our little Ruby, but we knew she was in excellent hands and we even had videos sent to us by Auntie Robyn which let us know how much fun our girl was having! ( I'll share one of those in a future post).
We took LOTS of pictures and a few videos. Here are few of my favorites.
The view was amazing!
Porter and Daddy in the pool!
"I'm just sitting here watching the wheels go round and round...."
And a short video of one of many pillow forts Porter made all weekend!
We want to thank all of you for sharing in this journey with us. Also, I hate to put it in writing because I don't want to jinx it, but we sent the letter from Dr. Landry stating his diagnosis to the preschool autism coordinator who said that Porter is now officially on the waiting list to receive IBI (Intensive Behavioral Intervention) . He is #20 on the list and they plan on taking up to 20 in the program. Yikes, so close. She didn't want to guarantee us anything until they assess each child individually for hours etc. but I seriously felt the biggest feeling of hope that I have had in a long time. I think our prayers are working, but don't stop, we still need them.
Chat soon
Rae
xo
