I am so used to advocating for Max in every which way that I've neglected one key thing: encouraging Max to advocate for himself. That occurred to me as I read through The Journey To Life After High School, an incredibly comprehensive report by AbilityPath that's worth reading no matter what your child's age.
The report, out today, gives an overview of life that lies ahead for our kids. It details our children's rights by law, what makes for successful IEPS, employment opportunities after graduation, housing and benefit options and legal decisions to consider, plus resources including a national directory of state agencies and a "What to do and when to do it" list.
There's a section on self-advocacy, too, which is when I had my lightbulb "Better start encouraging more of this with Max" moment. It's going to be a big mind shift for both of us.
"Teaching children to self-advocate is a hard lesson for both parents and children, regardless of whether the child has special needs," notes Michelle Ficcaglia, PhD, BCBA-D, Director of Children's Services at Community Gatepath in California. "Added to this, parents of children with special needs have been in the role of champion and advocate for their child during very tough and critical battles for much of their child's life.... It can be challenging to allow children to advocate for themselves. But starting young means you can teach children to self-advocate gradually. It is easy to find low-risk situations. These small successes will build confidence and comfort with self-advocacy."
Self-advocacy involves six key elements, the report notes:
1. Understanding your disability and being able to explain it through words, pictures or gestures
2. Knowing your rights that are protected by law
3. Speaking up for yourself and your interests
4. Asking for what you need in order to live day-to-day
5. Negotiating on your own behalf so your needs and wants are met
6. Utilizing the resources that are available to you.
This may seem just a wee bit overwhelming, but it boils down to baby steps. The report notes that self-advocacy can start with small tasks, like allowing a child to decide what he wants to wear in the morning or what they'd like to eat for breakfast. Choices help a kid feel empowered. The idea is to help a child feel confident in himself, and in his wants and needs in life. Perhaps there will only be so much a child, teen or adult can ultimately do in terms of self-advocating, but letting him try can help you better understand how far he can go.
I already give Max choices (what to wear, what to eat) but need to work on bigger ones—say, what do you want to do this weekend, where do you want to go for our next vacation. Max sat in on his last IEP—his idea. It ended up being a great thing, and I'm going to encourage this, going forward.
The other afternoon, I sat down with Max and added a button about having cerebral palsy on the About Me page on his speech app. Max knows he has CP, and is comfortable with it. Next up, we'll add a button that lets him explain what it is.
Baby steps, for helping a big kid come into his own.
My brother has tremors of an unknown origin. When he was a teenager, it just looked as if he was nervous. He failed his driver's test for the first time even though he did everything right because the administrator said, "you look nervous. An extra month of practice will do you good." My brother was too embarrassed to state the real reason. He spent the next month practicing his driving and also learning to say, "I have tremors that make me shake. It makes me look more nervous than I am." Its helped him at job interviews, doctor's appointments, even dates. Self-advocacy is so important!
ReplyDeleteThat is a great thing to point out! I have sometimes heard of parents who don't tell their children they have a disability, or just downplay it by not explaining what it is. Probably more common for parents of kids with autism, ADHD, etc, but I've met kids with cerebral palsy whose parents didn't want it mentioned in front of them. To me. I feel like this can be detrimental to kids, because as they grow up others are going to look at them and either, notice that they have a visible disability and make automatic assumptions and judgements, or not know that they have an invisible disability and make automatic assumptions and judgements about them. If you help a kid to know himself well, to know what special needs he has, to know what he can do well, what he feels comfortable trying on his own, and what he needs help with, and to be able to stand up for himself and his rights... that is way more helpful than telling a kid "You're just like everyone else." NOBODY is just like everyone else! And I'm not sure I'd even want to be!
ReplyDeleteI may not be as loud as a trumpet, but the flute's pure, resonant ring stands out from the rest of the band's sound. In other words, I may not always do things the same way, but I can still do them. As an autistic flutist, I self-advocate through music and my first day of band camp went well. I think I'm getting the hang of marching!
ReplyDeleteThanks Ellen. Im a 16 year old with mild sensorineural hearing loss in my right ear(I wear a hearing aid and use an FM system in school). I realize my disability may be different than the focus in the report but Im sure it will be helpful as I continue advocating for myself as I go through high school and look forward to college.
ReplyDeleteAbsolutely ... self-advocacy is important, and not just for so-called "higher functioning" kids. For kids with the most significant impairments, simply being able to demonstrate unequivocally that they are self-aware and have preferences can make a huge difference in their lives. As you point out, there are all kinds of ways to communicate, and everyone can have some kind of voice.
ReplyDeleteThis is a wonderful, wonderful post Ellen. For a long time, I was Lindsey's advocate and cheerleader. She became so dependent on my cheerleading, she also, at times, seemed to be paralyzed by indecision, waiting for me to praise or guide her. This is a process. Maybe we went overboard on Lindsey because she certainly IS independent now and doesn't always want our help/advocacy/cheerleading. I'm sure there is a happy medium, but it is a hard-to-find place. Again, love this.
ReplyDeleteWe have always been exceptionally candid with our kids, even about medical & life & death issues. People have always thought that was horrible, but I find that my kids have had incredible self-image, poise throughout treatments, & no fear of death. That has served everyone well because when our two 19 year olds died in 2006 Nichole was very able to deal with it as well as express how it affected her. This despite her being nonverbal, but she clearly displayed to everyone how her faith played a role in everything. I remember when Cindy entered kindergarten and they let kids with disabilities be loud in class but then they would also remove them to self-contained if they got "too" loud. I told them we had very high expectations for Cindy's behavior and she was to be disciplined the same as any other student despite her cerebral palsy. It was an amazing thing, she only had one note home written all year, but the other little boy who was also integrated was routinely pulled out for talking too much. I was always grateful that my girls responded so well to high social expectations and appreciated the other adults who maintained the same. I realize it's nothing like Max who has sensory issues, but it was still so critical to their development and maturation.
ReplyDeleteThis is a great point; something I'd not thought of but can now start slipping in as we go along. Great notes, thanks!
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