Baltimore Baby!

We embarked on an epic road trip for Sebastian’s March Break. One of the things about having lived in so many places is that we have friends scattered about the globe. Which is pretty awesome! We rented a mini-van so we could fit Seb’s equipment (wheelchair plus flamingo toilet chair that doubles as a shower chair) and left after Sebastian’s Nutrition Clinic appointment a week ago Friday. Just the four of us. We’ve done a big road trip before but had Ali’s parents along for the ride. This time it was just us.

First stop was actually just outside Buffalo (to visit PipandBean) to pick up some superhero accessories, but I’ll share that story later. We drove further south (straight through…11 hours later) and spent the weekend in Baltimore with friends that are more like family. Mark was our first and then last flatmate when we lived in London. He was also there when we got married, he’s our witness on the marriage certificate! We were looking forward to spending time with him and his wife Leslie and to meet their dog, Archie.

We adventured out in the rain on the first day, making new furry friends at a dog park. Where Tallula told everyone we don’t have a dog ‘yet’. And Sebastian met twin black labs. We passed the St. Patrick’s Day celebrations nearby and walked partway along the pier, meeting more dog-walking friendly folks. On day two we walked along the bay in the sun and chilly wind all the way to the shark submarine downtown. There was no stopping us!

You’ll also notice that Flat Stanley came along for the ride. We stopped for delicious fudge and an impromptu dance party to Prince at Killwin’s. Picked out a couple records at the record shop across the street and passed the tavern known as being the very last place Edgar Allen Poe was seen alive. We enjoyed seeing the row houses and colourful shops as well as the many factory buildings repurposed into businesses, like the Barnes and Noble’s near the shark submarine. Sebastian enjoyed going over the cobblestone streets and Tallula loved running ahead and holding Leslie’s hand on our adventures. A big highlight for the kids was hanging out with Archie and feeding him treats, like peanut butter which he licked from their fingers. Tallula is certainly right, we don’t have a dog yet, but we will someday.

Super big thanks to our fabulous hosts and friends. Next stop, DC!

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Overnight. 

I didn’t think anyone else could take care of him but me. Like me. The last weekend in February Ali and I had our first night away from the kids since Sebastian was born. Our last trip had been a ‘babymoon’ to Cornwall, England when I was just 5 months pregnant. And after Sebastian was born we had to be apart for 11 days while he was in the NICU and I had to commute back and forth to the hospital. The nurses had pity on me and had let me stay the first 5 days after his birth before sending me home. 

After he came home with us we were always together. Mother. That was my new job. I was a mother. It had turned out much more complicated that I thought it would be. I remember my first outing without Sebastian. Because I did have them. But they were short. An hour or two. In Cairo there was no one else. Just me. But I did have time to write once a week when ali took Seb to music class. There was ali.  

Ali had business trips that I never had. The next time we were apart was his g-tube surgery. Ali slept in hospital with Sebastian while I took care of Tallula, who was just a baby. I do remember when she was a baby. But the memories are so different from the early days with Sebastian. 

I used to dream about holidays on the beach like I had in my twenties. They never came. At least not like I dreamt. We did to go the beach with ali on two of his business trips when we lived in Egypt. Sebastian loved the water from the beginning. His feet kicked and his face smiled and the beach dream evolved. I didn’t want to escape. Until I moved to Canada and was lost in winter. It lasts forever and at the end I’m just tired of digging us out of the snow. 

So I planned an overnight for ali and I in February. Not to the beach. Instead we stayed in a guest suite overlooking a frozen lake. We trekked in snow shoes out to the island in the middle of the lake after a long, lazy breaksfast. We even sled down the hill to the lake afterwards and I laughed like I haven’t laughed in a very long time. Ali slept in and even though I wanted to, I couldn’t. But I did enjoy the quiet time to myself. It was strange. It was the real time away for me. Because we go on dinner dates and we come home late after the kids are in bed. But we are always there in the morning. And this time we weren’t. 

And everyone was ok. In fact we all had a pretty swell time. It’s good to trust others with your kids. They like that special time with a Grandma and Pap and friends like Marjorie. Even when letting go is hard. It’s necessary. And now I know I need to do it again and again. For me. For us. For our family. 

   

   

Cerebral Palsy Awareness Day

Every year I try to do something different. I’ve answered questions. I’ve shared facts, stories and photos. I’ve worn green and asked you to do the same. I’ve celebrated Sebastian and other kids like him. I’ve tried to create an understanding of what cerebral palsy is and what it isn’t. How it affects our lives and how it doesn’t. I’ve asked you what you want to know and possibly shared things that you didn’t.

On March 20th, 2009, I first told the world that Sebastian has cerebral palsy. I used World CP Day as a coming out of sorts. Living oceans from family and friends it was the best way I knew how to reach everyone. Looking back now I realize why I had the whole family dress up in green when we were visiting friends in DC last week. This year the date is March 25, but I was working on memory! And sometimes the days all run together anyways.

Today I just wanted to get everyone dressed and ready for the day. I realized after I sent Seb off on the bus in his super hero blue shirt, that today was the day meant for the CP green. What does it all mean anyways? These awareness days? For me it’s a day to hopefully reach out and help others learn or understand something or even give them the opportunity to ask questions. Since that day in 2009, I’ve set up a Facebook page dedicated to Sebastian’s adventures. I do this to help others see that despite his disability, he engages in the world around him and lives a full and happy life that is not without setbacks and challenges. Individuals with CP range in ability which means the side effects of their CP also range. As with any disability, every individual is unique. It’s a day where I take the time to reflect about how cerebral palsy affects our lives and how it doesn’t. It’s a day when I make the time to at least share a family photo and, if I’m lucky, a couple stories or thoughts to go along with it.

Tallula is starting to understand how her brother enages in the world around him in his own way. She knows that he kicks his legs when he’s excited or upset. She knows that he doesn’t talk like we do but can tell her yes or no using his smile for yes and eyes up for no. She asks him questions and gives him the chance to answer. Like siblings do, she doesn’t always want to share or include him but sometimes she pines for him while he’s still at school and can’t wait to sit with him when he gets home to watch cartoons and eat peanut butter together (late afternoon snack). They adore each other. Sebastian laughs at her dramatic outbursts and we all have dance parties together. Tallula loves to go to soccer with her ‘bruva’ where he kicks the ball while being guided in his walker and others cheer him on as he kicks a goal. Tallula kicks the ball back to her brother or plays with a friend who is there for his sibling. She runs ahead at the playground to play on the things she enjoys, like the slide or in the sandbox, always making new friends. If we are lucky there will be an adapted swing next to a toddler swing so they can swing together.

Recently we were at a park while on holiday in Washington DC. I was holding Sebastian up to walk behind Tallula on the play structure. After we zoomed to the bottom of the slide – Sebastian on my lap and Tallula in a slide next to us – we turned around to head back up the structure when we were stopped by a little girl, Sebastian’s age, also playing. ‘Hi’, she said. I said ‘hi’ back and she said ‘I wasn’t talking to you, I was talking to your son.’ She asked if he could walk and I said ‘with my help’ and she asked if I would help him. ‘Yes!’ I said. She then invited him to play tag, immediately tagging him so he was it. Sebastian was all smiles and even laughing as we raced around. He had the best time ever. She asked why he couldn’t understand her and I told her that he could, but he couldn’t talk like we can. ‘Ok’ she said. She was happy to play with him regardless. It was the first time that a child has approached Sebastian rather then me on his behalf and it was AWESOME. 

I want there to be more kids like her. Unafraid to approach Sebastian to say hello and invite him to play. That’s why I tell you all of the things he can do and can understand. That’s why I share his stories, both triumphs and pitfalls. I want you to share them too. Because without kids like Sebastian in your children’s classroom or on the playground, children will take longer to approach kids like him. So, parents, friends, and family have to be an active part of the solution, inclusion.

Wearing green in just a start. Inviting someone with a disability to play, that’s the goal.

School Psychologists and Standardized Tests: YUCK

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Imagine a standardized test created for kids that can’t talk or use their hands to point. Now imagine my non-verbal son – who cannot use his hands to point/choose – being assessed by such a test. A page of 4 picture choices. ‘Which one is the boy?’ He looks at the boy on the page immediately and then back to the school psychologist. She didn’t see him look at the boy. So she goes through each photo and asks ‘is this the boy?’ It’s a dog with a green blanket. Then a chair. Then the boy. Then a bike. Sebastian likes bikes and dogs so he smiles at those choices. According to him, he’s already identified the boy. He’s done with this page but she presses on.

Proving your worth/knowledge when you can’t communicate like everyone else is not only a challenge but incredibly unfair. The next page has 4 more pictures and while he’s still scanning each one she asks him ‘which one is the farm?’ Again he looks at the correct picture and she only sees now because she’s watching him like I ask her to; while I’m holding the incredible awkward book file with more pages like this and outdated instructions. I’m holding it at his level so he can see it. She realizes that perhaps she should have someone helping her so she can watch his reactions rather than focus on holding the book. I’m wondering why she hasn’t realized this before now. By the 4th page he wants to have his lunch. Me too.

I’m wondering several more things. ONE: why contact me NOW, only two weeks before your report is due to ask for help? To show me that he can’t do your testing the way you want him to? To demonstrate why you are going to write in his report that he is not able to be properly assessed at this time; though we both know this report will follow him through the education system forever. TWO: Why hasn’t a test been created for a boy like my son? Why do you have an outdated book, with a binding that forces you to flip each page over each time, cumbersome and distracting. Why don’t you have a program on the computer that my son can access independently with a switch or partner assisted, like he communicates. Why isn’t there a program on the computer that can be accessed by eye gaze? THREE: How can a standardized test created for kids that are verbal and have some fine motor function, be used for a child without either physical capabilities? How can you believe that you will get a clear understanding of my son’s cognitive abilities by using a standardized test created for children using entirely different standards to my son? FOUR: Why are you asking my son his colours? And what a boy is? Why do you assume that you have to start at the bottom? Why can’t there ever be an understanding that there is a base knowledge? Or that your questions are boring because they are too easy? Or that maybe you’re not giving enough processing time/scanning time for some of the more complicated questions.

I’m thinking of the scene in St. Vincent, you know, that recent film with Bill Murray? When he’s recovering from the stroke in the hospital and they are holding up basic cards to help him regain his speech while testing his knowledge. When she (Melissa McCarthey)  shows him the tree and he says money (because she owes him money for the tree). I understand that you have to test basic knowledge. But honestly, I’m tired of professionals not believing in my son. Not knowing that he has a base knowledge of his colours and the gender of his friends. I’m tired of professionals not communicating with my son. And I’m angry. I’m angry with the system. I’m angry about the standardized tests.

I’m also anxious. I’m anxious because a group of individuals whom have never met my son will sit down with a pile of reports. In that pile with be the report from the school psychologist. This group will recommend a school placement for Sebastian based on what is written in these reports. Having never met my son, they will decide his future education needs with the input from the professionals that work with him on a daily and weekly basis. Plus that report from the school psychologist that says she can’t get anything from my son to show his cognitive awareness, knowledge, or functioning. Will she write that it’s because the test isn’t ACCESSIBLE to him? Will she let them know that she doesn’t know how to ACCESS him based on his physical needs and abilities? Will she let them know about her own inadequacy in understanding how to communicate with my son? I’m doubtful.

As a former educator myself, I fundamentally and philosophically do not believe that standardized tests tell us much of anything at all. And I certainly don’t want the future of my son’s education to be based on the results, or lack thereof, of one.

Next week we have our ‘Transition’ meeting with Sebastian’s school team. They will provide us with a pile of assessments to pass on to the principal of our community school, which is across the street from where we live. That school does not have a program suitable for Sebastian’s physical and medical needs. Nor are they willing to accommodate those needs because they don’t have to! That principal will call together a group for a SEPRC meeting. The group will look over the information and recommendations from the team currently working with Sebastian and they will then present their recommendation to us. We can agree with their recommendation or ask for another meeting. What do I want for Sebastian? I want Sebastian to be included in an environment where he is wanted and his learning/physical/medical needs can be met and supported. I believe in inclusion but I also understand that teachers need tools and training to accommodate his needs. I hope for a program within a community school that can accommodate his needs while also being included with typical and non-typical peers. 

Stay tuned…