Cerebral Palsy, Egypt, Fundraiser, Our Son

Along the Way

Sebastian and I made a visit to the CSA (Community Services Association) on Sunday to stop in at the Garden Bazaar and see our favourite Thai ladies at the Cooks Day Off, where women (and sometimes men) make and sell food from their respective countries.

The Bazaar was very busy and it was challenging to find our way through with the stroller, but we made our way back to say hello. Sebastian is pretty popular with the ladies, as we all know, but the ladies at Cooks Day Off always get him to smile and laugh and I get to use my rudimentary Thai that I learned when living in BKK. And eat some yummy food that reminds me of living there too.  Our favorite is the Thai food, but there is some good Indian food there and I get Ali some French stuff once in a while (it’s laden with meat) and I also get the night off of cooking. Everyone is a winner.

We didn’t purchase anything on this day and as we left the room, I was happy to see the Advance Society table right outside. After loading Sebastian back into his stroller, I decided to have a chat with one of the volunteers. The Egyptian Advance Society is an ‘organization for developing skills of children with special needs’ and they usually have a table at the bazaar. Sometimes they have students running it to get practice with making change, etc. The Advance Center is  linked to the LRC where Sebastian has therapy. They teach older students so it’s not a place where Sebastian can gain from their services at this time. They do have a parents support group, but they hold their meetings in Arabic.

The Advance Society is building a new center and is currently fundraising for that venture. I mentioned my fundraising projects to fund Sebastian’s therapies and equipment to the volunteer. I was curious if I would be able to work with them on my next project. (A friend of mine is putting together a calendar with photos donated for the photo raffle. Some of the photos were offered as prizes, and some are new ones by the same photographers. It’s in very early stages, but will have to move quickly as we want to sell for the holidays. The main goal will be to reach out to people we don’t know this time! Stay tuned…) They were actually selling calendars, so it wouldn’t likely work for us to bother sell our calendars together but, I had a very good chat with the woman volunteering for their fundraising department. It was one of those conversations that makes you feel like people come into your life at that moment for a reason and vise versa.

She was showing me the plans for the new center being built that would have a heated pool. I inquired about hydro-therapy and she said hopefully. She also mentioned that a lot of the services at this new center were for children with autism. I replied that autism is really ‘popular’ right now. I immediately wished I hadn’t said this of course because she then told me her son has autism. Her reply was that ‘autism is the hidden disability.’ I said yes, but it’s also the one everyone is talking about now because for so long they haven’t talked about it. I didn’t mean this in a negative way and hoped she realized this. The reason for my abrupt comment could be attributed to my recent experiences of people/media/books/ focusing mainly on autism as the ‘it’ disability. An example of this is my trip to Borders bookstore in Michigan. There weren’t any books regarding cerebral palsy or any other special needs EXCEPT autism. There are a lot of kids being diagnosed with autism, yes. But there are also a lot of kids being diagnosed with CP and parents equally need information and support.

Aside from parents of kids with special needs needing support, we discussed the lack of education about special needs here in Egypt but how positive it is  that the Egyptian community is being educated about autism through their organization. Unfortunately, children with disabilities in Egypt are generally kept at home because no one talks about disabilities or understands them. We talked about the need for the community to learn about other special needs as well and we began sharing our personal stories about our sons.

As we were talking about Sebastian she asked me when he was diagnosed. I told her that he had a traumatic birth and was not breathing when he was born and spent 16 days in NICU. I told her that we knew there would be the possibility of CP and that he was officially diagnosed at three months old with CP. I said that it was good since he’s been able to get therapy from such a young age. She had tears in her eyes and shook her head. She then told me that her daughter was also born in a traumatic birth and was also not breathing but that she died. I reached out to her. I could feel her pain. I felt so blessed to have Sebastian with me. I know that we have challenges, but had I lost Sebastian, I don’t know how I would have coped. I love him so much. And we are so blessed to have him in our lives. Exactly as he is.

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2 thoughts on “Along the Way”

  1. Oh those moments can be so poignant, can’t they? Thanks for sharing!! I hope that this organisation is one that will be able to help you and Sebastian in the future. I know what you mean about autism. Recently funding for early intervention for children with autism was given a massive boost here in Australia, while children with other, lesser-profile disabilities haven’t been given the same funding. I know that early intervention for kids with autism is VITAL, but the same is true for most disabilities. It’s kind of frustrating for one disability to be highlighted at the expense of others…..

    I LOVE LOVE LOVE Thai food too! You’re lucky to have some yummy Thai food on hand 😉

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  2. Kara, I too know those moments when you realise that although we wish the traumatic birth never happened we are blessed that our kids are alive and were saved. I think there will alway be that kind of division between behavioural and physical disabilities, although we all share similar emotional journeys they are just every different issues. Yum Thai! I will be in Thailand in 2 weeks can’t wait!
    So excited to hear about your Aussie visit too!

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