Lately, I have been reading a lot of blogs written by parents of children with special needs, especially children with severe, intensive or complex needs. Reading these blogs is a whole different kind of education, it helps put into perspective the whole life of students, beyond the 30 hours a week, 180 days a year they spend with in the classroom. It also helps one to appreciate "the other side of the table"
A colleague and I have been speaking a lot lately about how we could do more for parents as professionals, and just today I spoke with another friend about a philosophy of mine that I have been following for the past four years - "approach every interaction (with a parent - or anyone really) as a chance to make their load lighter and their path easier to travel." Since adopting that stance I have have very, very few negative interactions with parents. Still I wonder how we as professionals could do more to work with parents to attain the best possible outcomes for there students. How can we create better partnerships? How can we best present information? How can we create school-home carry over (and vice versa)? How can we point them towards resources for things like respite, personal care attendants, transition, community leisure opportunities, behavior management and AAC? Reading these blogs by parents of children with special needs helps me think about approaches that might work.
Here are the blogs I have been reading:
- Pam and Josh's Blog - an active AAC Family
- Micro Preemie Twins Blog (the video of Eden in her first power chair is a must see)
- Postcards from Holland
- The Ups and Downs of Raising 3 Amazing Kids
- Lucy May
- Maternal Instincts...Flying by the Seat of My Pants
- Our Little Piece of the World (great photography)
- Fighting Monsters with Rubber Swords (today's entry about Schuyler asking for a big girl voice on her AAC device is very touching, this blog is now a published as a book entitled Schuyler's Monster)
Hi Kate, I'm glad your enjoying reading my blog you see I'm really not a writer but I'm working on it. My daughter Ashley was born with chromosme 14q deletion syndrome and this has set me on a mission to help her achieve her personal best and have loads of fun along the way. I started blogging just as a way to help me document her progress better. I love all your reviews of the latest products for people with disabilities and your attitude is fabulous.
ReplyDeleteI love Holland and Eden story too their mom is wonderful as well. She gets all kinds of equipment too.
Do you have any books on disabilites you would recommend?
Sherry
http://ashleydamonandjames.blogspot.com/
Let's see... books... first off I recommend the Batshaw et al book Children with Disabilities. It is a textbook and therefore expensive (if you buy it new), but I use it as a reference all the time (especially when reading medical reports). http://tinyurl.com/6oa56f
ReplyDeleteWoodbine House has excellent books on many topics relating to children with disabilities and I highly recommend them (and own most of them). Many of there best books are in the Topics in Autism and Topics in Down Syndrome Series. Don't let that stop you from buying the books, what ever the topic is from toilet training to teaching conversation or reading or fine motor skills WILL apply to most children with special needs.
Woodbine House:
http://tinyurl.com/5rmx57
Topics in Autism: http://tinyurl.com/6yfpb8
Topics in Down Syndrome
http://tinyurl.com/6d438w
Also for Ashley to look at I love the Turtle Books series, many of which feature young children with multiple special needs working on things like switch use and feeding.
http://www.jasonandnordic.com/page1.asp
great sites.... lots of infos ...
ReplyDeletewe also blog - my daughter isabella lives with the rett-syndrome and workes a lot with AAC !!
www.isabella-online.blogspot.com
I just found your blog and LOVE it! Thank you for all the amazing links and resources, they are wonderful. I shared it with the head of my daughter's AT team! My daughter Brooklyn is four and has Rett Syndrome. We will be using LOTS of your ideas!
ReplyDeleteThanks Again!
Kelly
Do you know about the Assisive Technolgy Ning? It is an online commun
ReplyDeleteity about AT and there is a group within it about girls with Rett, it might be a good resource for you.
Kate
Kate, great site thank you.
ReplyDeleteYou are right the parent blogs are a great resource for all of us, parents and educators. It is good for us as parents to blog to share the information, to reflect on different aspects of the journey and hopefully make it a little bit easier for everyone else.
Gina, Mum to Mac @ http://inkyed.wordpress.com