Our local Ds association (Ups and Downs) holds a Conference every year for parents of kids with Ds ages 0-5. Last year i never attended as it was my daughters birthday and also Castian was in the hospital. But I definetly made the effort and was really excited to go.
At this years conference we had a few choices of what sessions we wanted to go to. For me and everyone else though the morning started off with a session from Jennifer Buchanan, BMT, MTA from jb music therapy. She went on to tell us what music preference can say about your personality.
Those who enjoyed music in the Reflective and Complex category, which includes classical, jazz, folk and blues, tended to be inventive, had active imaginations, valued aesthetic experiences, were tolerant of others, and politically liberal.
Individuals who preferred alternative, heavy metal, and rock music in the Intense and Rebellious category were inclined to be curious, risk-takers, physically active, and intelligent.
Listeners of Upbeat and Conventional music, which includes "country, religious and pop music, were outgoing and cheerful, enjoyed helping others, saw themselves as physically attractive, and held conservative views.
Energetic and Rhythmic music consisting of funk, hip-hop, soul, and electronica attracted people who were talkative, energetic, forgiving, and opposed to conservative ideals. They also perceived themselves as physically attractive" http://www.utexas.edu/friends/popups/research_48.html
She asked up to make a choice out of the four categories and which if deserted on a island which type of music we would take with us. For me at that moment was hip hop dance music- I go through cycles some days i like the hard rock and alternative , others i like dance and hip hop, it all depends on the day and what type of mood i am in.
She also talked out Music and what music can do when used as a therapy tool. How kids who had taken music therapy have better hearing and speech, improved eye-hand co-ordination, and
improved communications skills. How in general Music can be used as a tool to connect to people.
The story she told us about how she connected to her Grandpa when she sang a song was inspiring. She visited him in a home- and this was back in the day that seniors homes were basically bland and depressing . Her grandmother visited him everyday and one day she gave Jennifer a sheet of music and asked her to learn it. She went on to learn the music and sang the song for her Grandpa. In that instant he connected to her and for the first time ever he touched her hand, she had been able to break the wall down through music.
She went on to tell us about a song she sang the to her grandma when she had her stroke. We went on to sing as a group and I could feel myself on the verge of tears. Not because it was sad but because singing that song is one of my best memories, as i sing it, and have sung it to each and Every one of my kids. I sing it meaning every word- "You are my sunshine, my only sunshine, you make me happy when skies are grey, you'll never know dear how much i love you. please don't take my sunshine away" I sing this with Castian and he just stares at me and sometimes grins, although I'm a terrible singer, he loves it when i sing. And in those moments we have together as a i sing. I am reminded of how lucky i am to have him in my life and the lessons he has taught me and what joy and peace he brings. He in a word is my Life therapy.
Our next session was with Anita Wamsley, Our Ds clinic Physiotherapist. She went on to describe how we need to get our kids active. As most of us parents know, out kids have lower metabolic rates, they in a word have a increased chance of being obese. I worry about Castian, as if you have ever met me it is also a problem I too struggle with. She went on to say make it fun, have friends involved, plans things as a group. Make it seem like fun and social. So at this point i am seriously thinking about investing in a Xbox kinect. Not only for Castian in the next few years But for my typical kids. I realized that alot of what she suggested would also apply not only to Castian but to my typical kids.
Also in this session i learned about something called atlantoaxial-instability. Castian will not be allowed to do somersaults because of it. And if we sign him up for any physical activities that the instructor should be made aware of it. This was the first i heard of it but that is because as of yet he is still too young. Age 2 is the age where they start the screening. So i learned something new today.
The next session was a resource session with Amber Boyd Executive director of Up's and Down's. I learned about a few more resources which included, toys, books, games, therapist, support groups. There were too many to list here but if you live in the area and need some info please contact ups and downs, prep program, or myself and we can help you find what you need, or at least point you in the right direction.
After lunch was "My Child, My Business: Organizational & Management Skills
Although It was a bit on the dry side she did have some VERY good ideas for organizing the pile of paperwork that i receive from different doctors and therapist. She started off my saying that we as parents of special needs are like executive employees we have alot of planning and managing to do with our kids. She suggested make a specific filing system for Castian and how to organize the files. She suggested that we also have a binder handy to put current information that we can provide to people who are caring for Castian. As participants of the conference we were given the manual that Sandra authored. In it was steps to creating a filing system and a CD-ROM to print off templates of worksheets. This was most definitely something that i hope to be using eventually with the hopes it will make my life easier.
The last session of the day I had a choice between listening to the Self advocates speak or Barbara Tien from The Prep Program speak about Inclusion. This was a tough decision- which to choose? If i could only split myself in two and see both. In the end I chose to listen to Barbara. She starts off by saying our kids are going to become celebrities in their community, even if I'm shy and not really outgoing... he's going to change all that. And yes it's true, Castian is already quite the celebrity grinning his way through cyberland.
I learned the most i think this session. I learned that my expectation for Castian to go to regular school and be in a typical classroom is OK. I learned that just because he has Ds he shouldn't be labeled and put in a special ed class. That the expectation I have from him should not be any different from my other three kids. We don't know the full potential of someone with Down syndrome because no one has taken the time to find out.
Barbara is a firm believer in Total Integration and she makes some valid and persuasive points. Its like that old saying goes i you give some one a fish he can eat for a day, but if you teach someone to fish he can eat for a lifetime. Our kids Need to be taught how to fish! We may have to find different ways to teach them or wait a bit longer before they get it, but they will never learn unless they do it themselves. I am thankful to the parents that have come before me and fought for their kids right to be part of the typical system. Thankful that they put forward the expectation of our educators to include our kids. She spoke on what to expect from you child's educators and how their should be a learning plan individualized for your kids. How we should take a role as parents and what to expect from educators.
Currently as it stands in my area, most kids are integrated up to grade six. In junior high and senior high it is a little harder to get them integrated, but hopefully with time that will change.
Anyway she went on to say that these kids with Ds that are placed in special ed classes are becoming depressed and have high anxiety and just stop functioning, stop growing. Why? because special education classes these days are mostly for those kids that have severe emotional issues, some of them are violent and bullies. The special ed classes are the where they put the kids that they do not know how to deal with yet. Kids with Ds aren't violent or depressed, they just learn at a different pace and their curriculum programming needs to be changed to suit their needs. A child who is Academically inclined can have their curriculum changed to make it more challenging for them, why not someone who is academically challenged? As parents we MUST set the expectation for our childrens educators and accept nothing less that what we want for our kids. We may have to fight and beg and plead but our kids deserve it and have a right to it!
On a side note she mentioned that it is known that people with Ds tend to get Alzheimer's earlier and that was just something about Down syndrome. What they are finding now is that it may not be Ds related; but rather its simply ... " you don't use it, you lose it!", people with Down syndrome were put i institutions and not challenged to their full potential, therefore Alzheimer's.
When she had her kids, Ds people were automatically looked at as "Severely mentally retarted" ...today we see them as being " mild to moderatly mentally impaired". The changes that have occured over a few generations has been astounding. I am excited to see what babies being born with Down Syndrome today will do with the resourses we have at our disposal.
Typical kids today are living life with kids with Downs syndrome in their schools, in their classes. To them this is normal and they are accepting because of it. A whole generations attutide towards Down syndrome will be changed because of integration! My 14year old son for instance wasn't really phased when we had Castians diagnosis. He couldn't figure out why i was having a meltdown. His view on Down syndrome was quite the opposite of mine and thats because he saw it in school, he was exposed to it and because of that he didn't see it any different than any other kids at his school. Where as I was brought up where I didn't see it, and the only times i remember seeing it was at a pool meant for kids with all sorts of disabilities. So when Castians diagnosis came it was based on fear because of stereotypes and what i had learned from society about Down syndrome.
My Son and others like him are A gift.... A gift not only to me, but to the world. With them they bring lessons of love, lessons of tolerance, lessons of acceptance, lessons of patience, lessons of hope. For those of you that found out post birth and wonder why? to me that's Gods way of getting past the prenatal screenings and bringing into this world what we need most, what the world needs most and you and i have both been chosen to be their guide.
If you have reached the end, i thank you for putting up with my terrible grammar and writing. I apologize if you were at the conference and didn't speak much to you. I am a bit of a social misfit and tend to be introverted in big groups especially when by myself. However out here in cyberland i am an open book and will pretty much discuss everything! feel free to email me or add me on facebook to learn more or ask any questions arlenecr@shaw.ca.
I loved reading this. Thanks Arlene!!! and yes castian is already a star, and a cute one at that!
ReplyDelete