One successful Tweetchat for The Coffee Klatch I had was with Julie Clark, author of Asperger’s in PINK: Pearls of Wisdom from inside the Bubble of Raising a Child with Asperger’s . Julie Clark’s book is a must read for all whose paths intertwine with a child who has Asperger’s sydrome. True, she wrote it based on the experience she had raising their daughter, Kristina, who has Asperger’s and sensory issues but there is a lot in this book for teachers, parents, grandparents, and all who work with or are raising children who have various special needs. Today you will learn more about Julie Clark, who is author, artist, advocate and mom. She will give us advice on teens with special needs transitioning to high school.
This is what Julie Clark had to say about her book and about teens with special needs in our short Q&A session before others joined us in Tweetchat.
Lorna: Julie Clark tell us about your book, Aspergers in PINK.
<< Julie Clark >> Thank you so much for having me here today! I’m looking forward to chatting with everyone! Asperger’s in PINK takes you inside the bubble of raising a young child with Asperger’s and autism spectrum disorder (ASD). It discusses everything from the road to the diagnosis, school, and community to extended family – even the marriage relationship. Although it does this through the eyes of a mom and daughter, it is also useful for many working with kids with special needs. It has practical tips both parents and teachers can use, encouraging each to work together. My book is good for grandparents and other family members too!
Lorna: What did you want to accomplish with your book, Asperger’s in PINK?
<< Julie Clark >> I had several things in mind. For starters, I wanted the conversation of the “PINK” end of the spectrum (girls) to open wide! There are so many girls/women who are misunderstood as autism is often seen through a “blue” (male) lens. I firmly believe we learn best when we learn from each other, and hope it encourages others to share their stories. I wanted those who work with Aspies and their families to see things from the family’s perspective, what it’s like “inside the bubble”. We live with a high level of stress and much of it is not from Asperger’s or autism, but from the environment/people that surround us.
Lorna: How old is Kristina and what grade is she in? How is school for her this year?
<< Julie Clark >> Kristina is a teen and is in 10th grade. Boy that went by fast! Honestly, High school is much better for her than elementary school was. In fact, when she was in elementary school, we were terrified of the thought of high school! Her high school is huge but is a much better fit than the smaller school she had before. Sure, there is teen drama and not just on stage! Let’s not lose sight these girls ARE girls and subject to delightful hormonal swings, too! High school isn’t perfect, but things are so much better for her than when she was younger. We realize others may have different experiences.
Five years ago, we would never have thought that our daughter would be able to live on a university campus. Now, it seems very possible! These kids do grow!
Lorna: This is SO encouraging knowing she be able to live on campus. You really did a lot of work to get her to this point!
<< Julie Clark >> This is why I still haven’t dyed my hair yet. All those grays are like silver ribbons! 🙂
How is High School Different
for Teens with Special Needs?
Students are expected to act quite independently in high school. There is less “hand holding” there. It is important to teach and prepare our kids to self-advocate, no matter what their concerns are. For teens who are college bound, senior year of high school is a little late to start the process. It is good to show our kids to self-advocate early in life/school. As well as being a hands-on parent throughout your child’s school years, the first step in teaching self-advocacy to our girls is for moms to stick up for themselves. Sons and daughters will learn from their parents’ example.
One thing is to tell teens that self-advocacy is not optional. They have to realize mom and dad will not be available to intervene for them at times. Basically, make it a new “rule”, “In high school, they expect students to speak up for themselves!”
Letting your child self-advocate does not mean he comes prepared with a list of “demands”. It means during the course of a day, the child knows how to ask for help and request accommodations so he can cope and accomplish his work. Let them know you are there for them as “Plan B” but they must give it the first shot.
There is more freedom to be who you are in high school. There are more new kids eager to make friends. A bigger pool of kids means a much greater chance of meeting others who share your special interests and that can be great thing.
Another thing to keep in mind about high school and girls is this and it can be summed up in one word: hormones. That messes up everything! Oy!
Teen Must Become Part of School Team
Most students with special needs have a school team monitoring their progress. It is suggested that the teen should be included in this team, attend team meetings and have his say. If your teen has not been a part of a team meeting before, talk to him ahead of time and let him know how it works and what his role will be. Also, prepare your teen because it can be very uncomfortable to sit there being openly talked about. Imagine if you were in their shoes? It is very hard for these kids to be the center of attention and be talked about. It is very emotional!
So be sure your teen knows what to expect and that the other team members know the student will be present. Resist the urge to do the talking for your child, let him talk in his own way and answer the questions. The parent becomes the child’s support and is ready to give clarification when needed. Expect the first meeting to be hard! Think small steps, too. The first meeting, your teen might not share much, but that is OK. It’s a process, a journey.
Before a team meeting, talk about what your child thinks needs to be addressed and then, like Kristina and Julie do, role play. At the meeting, have a list for your teen to refer to. Kristina’s school works on semesters, so they do a “ meet the team, meet Kristina, meet Asperger’s” once at the beginning of each semester. Then they speak with individual teachers as needed.
Lorna: In schools now, students working in groups is BIG, however many advanced students who strive for high marks do NOT like this. What do you suggest?
<< Julie Clark >> It’s a part of life these days. We do meet with her teaching team, and discuss group work. Like all schools, they firmly push group work as something “everyone” has to do in the “real world“. It’s very frustrating, so we give her tools she needs to make the most of it. It is not easy, and something we continue to work on. Compromise is one word we teach. Days with more group work we give her more space. If she wants time alone, we let her as she needs to refresh.
Theater has probably been the most effective area where “group work” works! Everywhere else, group work is problematic. Theater involvement saves many in high school. Drama clubs attract kids who are comfortable with difference, which makes them Asperger’s friendly.
Here is a brief summary of my review of Asperger’s in PINK:
Do you knnow about Asperger’s syndrome? Know a person, a young girl to be exact, with Asperger’s? Read Julie Clark’s Asperger’s in PINK: Pearls of Wisdom from inside the Bubble of Raising a Child with Asperger’s and you will know the challenges one family faces as they sift through the EAS (Educational Alphabet Soup) IEP, 504, PAT, FAPE, CSE, OT…
Julie explains in detail the adaptations, alterations and perseverance needed to win their daily battles. These battles were sometimes with their immediate family, their friends, the medical and school systems and sometimes with Kristina or even with their own insecurities. Even though this book fills the need for a resource for families and educators of girls with Asperger’s, it is also very beneficial for all parents of a special needs child because many aspects of the Clark’s family struggle apply to all. Readers will applaud this mom’s tenacity in enlisting the aid of professionals, in documenting the progress of her child’s education and care and most importantly in getting the all important diagnosis. The comprehensive index allows parents to use this book, after their first reading, as a resource. Also this book makes a great gift for family members, friends and educators so that finally you can all be on the same page!
Buy Asperger’s in PINK Amazon.com Amazon.ca Future Horizons
Where to connect with Julie Clark:
- Asperger’s in Pink on Facebook
- Julie Clark Art, artisan studio on Facebook
I recommend the following book on how to help kids with special needs become self-sufficient and on their way to independent living after high school. Read our review and interview with the author-mom.
- Ten Things Every Child with Autism Wishes You Knew: Updated and Expanded Edition by Ellen Notbohm
- Interview Ellen Notbohm: Ten Things Every Child with Autism Wishes You Knew Updated Edition