Life is so much easier…

when you chill out. 

  
When we were in Clearwater, Florida on Sebastian’s Dream trip I bought a fridge magnet with this mantra overlaying a picture of white sand, blue skies, turquoise waters, and palm trees.  It’s now on our fridge. 

When we were at the beach, I was happy. The forecast was one big yellow sun and temps over 30C (80F). Every single day. The sand was white, cool beneath the surface, and hot to the touch by lunchtime. Our hotel restaurant had a patio facing the water where exotic Florida birds visited each meal. We walked along the Beachwalk every night after dinner to watch the sunset (which didn’t happen until after 8pm). Each night I asked Sebastian, just to make sure, whether he wanted to go for a walk and watch the sunset and it was always YES. I could tell he was tired from the days’ events of meeting dolphins, boat rides, swims in the hotel pool or in the ocean, a visit to the Tampa Zoo, etc. but it was always YES. And so we did. 

Sometimes we left Seb’s chair on the pavement, near a tree, and walked onto the sand. Sometimes we walked to the pier. Sometimes we just sat and watched. Tallula didn’t want to leave. She wanted her body buried in sand and her toes wet on the shore. She wanted one more ice cream cone. We didn’t have to be up at a certain time the next morning. No one had to rush out the door to school or work or play group. We could sleep in, or like most families with toddlers, wake up with the body clock just like every other day. We were all happy.

  
I thought about how I could make this feeling last. How we could carry it back with us and into our daily routine. I thought about how we could move to the beach somewhere. I thought about how ali could work less and vacation more. I thought about days without appointments and meetings and classes. Then I thought about the reality of our lives and how we live them and what we need to do. The things we can’t change (hut on the beach? unlikely). The doctors we still have to visit. The meetings we must keep. I really wanted to do something to make us feel more like we did when we were at the beach and less like we do as we work to get through our lives day to day, oftentimes rushing to appointments and meetings. I thought about time and my reaction to all of these things. How the way you approach life is ultimately how you will live it and whether it will be enjoyed.

And so I choose to start here. Chilling out. Enjoying the sunshine at the park. Having desert first sometimes. Taking a walk at dusk instead of sunset. Going for bike rides. Find new places to adventure. Writing more. Stressing less. And figuring out how to make the meetings shorter and the appointments left often. Because as soon as we arrived back from our beach bliss, our week was jumbled with all of the things that make it difficult to chill out. But I just keep reminding myself.

  
Life is so much easier when you chill out. Cue beach scene and the sounds of waves crashing softly against the sandy shoreline.

Throwback Thursday: 7 years a Mama

Thanks to this little man for making me a mom 7 years ago. I’m so glad he did. Yesterday we celebrated his 7th birthday. He got his Sunshine Dream and met Winter from Dolphin Tale. So far our time in Clearwater has been awesome. I wouldn’t have my life any other way.       

Biker Grrl. 

  I rode my bike to the chiropractor this morning wearing my husband’s helmet because I haven’t had time to buy my own. The sun was shining and the air was cool. I choose my favourite side street and felt freedom as I peddled down the quiet street. The buds are bursting bright green in the trees and there is life everywhere. Families walking with their babies. Kids on bikes. Playing outside. Sitting on porches and patios. And me. Biking by myself. 

My back went out a month or so ago. A pain which stopped me for brief moments then passed. I had to cancel and reschedule several chiropractor appointments as we had to travel to Michigan a couple of times to say goodbye to my grandpa. Everyone says ‘you’ve got to take care of you’ but sometimes it takes something happening to do the trick. And the reminder that I am a carer. I take care of Seb and I need to always be able to do so. 

When I finally went last weekend I was surprised that acupuncture was involved. After an initial assessment and treatment I went back to my csr, sat behind the wheel and cried. I’ve heard acupuncture does that to you too. So does life. 

The best part of these appointments is that they are right by the water. I love being near the lake and today I road along the path with the crystal blue waters to my left while chatting with a good friend on my right. This bike stuff is liberating!

There is often a rainbow after the rain and this week was no exception. I had the pure joy of seeing my favourite music artist Sufjan Stevens play at Massey Hall, this time with Ali and not on my own, and then we celebrated an early birthday/wish celebration for Sebastian with a couple of good family friends. 

  
Sebastian has been granted a wish by the Sunshine Foundation. He will be celebrating his 7th birthday next week with Winter the dolphin from Dolphin Tale. So we opened up a big box of goodies Thursday for the trip. And what is a party without cupcakes and candles?!  

We had a good week. And the sunshine definitely helped. So does the bit where I take the time to take care of me too.  (Even though I’m thinking ‘ooh these stretches would be good for Sebastian’s hips’ or ‘I can’t wait to bike with Tallula near the beach.’)  

 

SEPRC. Yeah, you know me. 

 The SEPRC* was on the top floor of one of the congregated (segregated) schools in Toronto. The room opened and there was a wall of windows behind the committee. Very welcoming. There were only 4 sitting at the table and 4 of us walked in so a bit less intimidating than I imagined.

And it’s finished!!!

Every day I’ve felt that ache that comes with anxiety or drinking too much coffee. Combined it’s been doubly painful. I try deep breathing. I try praying. It dissipates while I sleep and in the first few moments of waking my stomach is calm. When I walk down the stairs in the morning it creeps back in.

On top of the SEPRC (school placement meeting with the TDSB*) we also had the meeting and report from the school psychologist (it was better than I had anticipated), hippotherapy start back up on Monday for the season (yay!) and dental work under anesthetic (yikes!) the day prior to our big (30 minute scheduled) meeting. I’m so glad we were their last one of the day because it went a bit longer and started a bit later.

We started with sharing a video Ali put together of clips of Sebastian and then I passed around an updated version of the student profile with the strengths that the resource room teacher from our home school had failed to complete from the reports she had been given. I think that people who are unfamiliar with kids like Sebastian are unclear on the specifics; such as ‘a clear yes and no for communication’ is definitely a strength and not a need. Sebastian’s school representative then shared his strengths and needs based on the same reports as well as discussion with his teacher. We were asked what kind of placement we wanted for Sebastian and they then shared their recommendation. The two were not the same.

Because Sebastian cannot respond to a standardized test as he communicates differently and cannot physically manipulate objects on his own, finding out his knowledge and understanding is a challenge; especially for people that don’t know him. We like to start at the top, meaning we expect the most of him and we work our way down as needed. Often others start at the bottom and aren’t sure how to work their way up. A couple years ago I saw the film ‘Certain Proof: A Question of Worth.‘ That phrase has stuck with me. We are constantly proving to others what Sebastian Can Do because they assume what he CAN’T and allow it to define him.

Enter the SEPRC. Although Sebastian’s academics are modified through his IEP* he is at grade level (grade 1) with the exception of literacy which is a mix of kindergarten and grade 1, depending on the skill. Though as I mentioned before the way we access his knowledge is very different from a verbal child.

Sebastian loves learning. And he can learn. So I’m going to make sure we continue to nurture and foster those opportunities for him. And that’s why I fight to make sure he’s in the right environment. The problem with the system is that it’s broken. The laws in place say they he should be able to be more integrated than they want to suggest. He needs extra support so they want to put him in a class which is segregated because it allows for optimum support. Because Sebastian relies on others for interactions as his communication is partner assisted, he really benefits from being around both typical and non-typical peers. The funding isn’t there for the maximum support needed in an integrated school setting even though the law says that he has the right to be included.

I believe in inclusion. I also know that Sebastian has a lot of needs. But I believe that it’s possible to accommodate them in an inclusive environment if everyone works together. I know that inclusion only works if the proper supports are in place and if the team working with Sebastian wants to work with him and help him achieve his potential. I do agree that being around others with similar abilities as himself may be necessary when forming an identity (one of the arguments from the committee) but in an ISP* class both could happen. In a DD ISP* class, there would not be integration. The committee argues that because of the current system (and funding) optimum support is put in place for the DD ISP which was their argument over the ISP class. Not only is the DD ISP segregation, it also doesn’t teach the skills that Sebastian is already LEARNING, such as reading and writing. I was not going to leave that meeting signing an agreement for DD ISP. And I didn’t.

They hold the SEPRC so that you feel like you are heard and that you have some impact on where your child goes to school. They tell you that it isn’t set in stone and if the placement they offer and you ultimately accept – after a school visit – isn’t the right fit, you can meet again and change schools. I don’t understand why they think this is a process we would want to continue to repeat or why it is acceptable to move our children from school to school. When we went in there they already knew what they wanted to offer us in terms of a placement. I believe they even had the school in mind. But they do listen and give you the platform you need to share. Whether the next steps occur as they said they would (getting an invite to visit the type of placement we asked for) remains to be seen.

Seb for SEPRC (1280 x 720) from Sebastian on Vimeo.

*SEPRC (Special Education Program Placement and Review Committee)

*TDSB (Toronto District School Board)

*IEP (Individual Education Plan)

*ISP (Intensive Support Program for physical disabilities)

*DD ISP (Developmentally Delayed Intensive Support Program)