Letting go while staying vigilant

How much about raising a child with disabilities is about "letting go"? Tuesday evening I went to a Family Panel on Transition, one of the "Informing Families Transition Series" presented by the Cark County Community Services Developmental Disabilities Program in partnerwhip with ESD 112, the Washington Initiative for Supported Employment and the Clark County Parent Coaltion.

The family panel featured a mother and one of her daughters, a girl in her late teens with Downs Syndrome and visual impairments. With the help and encouragement of a teacher, this girl now takes transportation on her own to various work and volunteer sites. As we learned, the girl was more "game" to do this than her mom. When her daughter first started using public transportation, her mom would stealthily follow in her own car to make sure that she got safely to her destination. Gradually, she realized that her daughter would not be left unattended by the bus driver(s) or staff at her destination, but that took an incredible leap of faith.

Children with special needs, including adults, are incredibly vulnerable and we moms must do a constant "dance of independence" to find the balance between protection and encouragng self-reliance. "Self-determination" and "Self-reliance" are both buzz words in the world of developmental disabilities, but the cold reality is that, to be safe, such self-reliance sometimes must be monitored, especially at first. This is never more true than when a child is unable to communicate potential or ongoing abuse. I think it is important while we encourage adults with disabilities to be independent we also respect the vigilance of their parents. I suspect that many parents, particularly moms, are "accused" of being overprotective of their children with disabilities - an unfair accusation.

One of the most heart warming parts of the panel was mom recalling the day that she called to arrange a van to pick her daughter up, and was told by the operator that her daughter had already done so, on her own, and done it correctly. It was also encouraging to learn how caring and competent the girl's teacher is. I knew that each school district has a program for 18-21 year olds to help studens transition to adulthood at full potential. But I didn't know that the teachers in these programs have as much to teach parents as they do their children.

Ah, youth,or I digress

I'd like to continue my discussion about brain growth in midlife women and adolescents, but my own brain is a tad fried from participating in the Clark County Student Environmental Leadership Forum today. This was a great environmental education event for teen,s and educators, organized by various organizations including Clark County Solid Waste and NW Service Academy. I went as a parent volunteer with Jacob's high school.

It was interesting to hear the information in these sessions through the ears of teens - a guy who didn't know that mercury is in tuna fish ("wow, they should take that out"), a girl who asks why the harmful chemicals in American shampoo and lotion aren't just banned like they are in other countries. These adolescents don't carry all the assumptions many of us "grown ups" have about society, such as systemic inequality or the perils of unchecked profit. I find it refreshing to watch students start to connect dots. And very cool to be able to help them create action plans to help make the planet a better place.

What I learned today:

- Doing something completely unrelated to being a  mother of a child with special needs can be a breath of fresh air

- A double Americano after lunch is essential when you are sitting in on back-to-back workshop sessions

Our brains ,they are a changin'

Inventing the Rest of Our Lives: Women in Second Adulthood is an excellent book by Suzanne Braun Levine that focuses on the changes in women’s minds and emotions, as well as bodies, as they enter their late forties and beyond. Levine calls the transition women make in their late forties and fifties a” Second Adolescence.” This idea hits home for me, since I have a teenage boy at home.

Brain researchers have found that part of our brain functioning related to memory does start to decline at this time – that would explain why I can never remember the names of Sayer’s “paras” (instructional aides). However, our brains also begin a “growth spurt” in myelin during midlife, most specifically between ages 45-50. Myelin is within the portion of the brain responsible for emotional learning (the medial temporal lobe). This section of the brain helps us in “making judgments, finding new solutions to old problems, and managing emotions – not sweating the small stuff” (p.14).

Adolescence is the only other time in our brain’s development that myelin increases. Because women experience an increase in myelin at the same time as the hormonal changes of menopause, this brain growth impacts women more than men. Dr. Francine Benes, a brain researcher, found that there is a 100 percent growth in myelin during the teen years and another 50 percent growth around age fifty. Further research has documented brain development in both stages of lives. In fact, the book Yes, Your Teen is Crazy, by Dr. Mike Bradley, discusses adolescent brain growth at length. This is the best parenting book I’ve come across for teens, but I digress.

My next post will talk more about how midlife women are like and how we are different (thank goodness!!) from teenagers. But for now, one way we maybe are like adolescents is our need to create silly songs. So, to lighten things up I will be sharing some verses on my ditty “My Different Nest Things” to the tune of “My Favorite Things” in the Sound of Music. So, channel your best Julie Andrews:

My Different Nest Things

Hot flashes and meltdowns and long IEP meetings

Getting used to “I want to touch seven lights” as greetings

Writing in parent-teacher logs books every day

These are a few of my different nest things

Parks & Recreation Inclusion: Isolation Buster

Parks and Recreation inclusion programs are vital survival tools for persons with disabilities and their families. They provide opportunities for fun and a sense of belonging. The Vancouver Clark Parks & Recreation inclusion program provides inclusion mentors (aides) and other accommodations that enable all children and adults to participate in their activities.

Sayer has gone to a Parks and Rec summer day camp for the past two summers, and has also gone to their winter break camps. In these camps, Sayer has gone on tons of field trips in the community, and is treasured by the camp counselors. It's wonderful to see the counselors eyes light up as give him a grand welcome each morning, rather than a look that says “uh,oh, will he cause trouble?” He has also taken gymnastics classes and rock climbing classes – these classes give our Saturdays some much needed structure.

Unlike schools, Parks and Recreation programs serve our children throughout the life span. Teens, adults and seniors with disabilities are all welcome, and such programs provide important respite for parents of older children who need a break but want their children to do something more rewarding than stay home with a caregiver.

But enough words, for a real look at the inclusion program watch this brief inclusion video of the Parks and Recreation web site (look for the "View the Inclusion Video" link). I am a member of the Access to Recreation Steering Committee that guides this program, so feel free to contact me with any questions.

Real time, real people

My eyes are bleary, a wave of nausea settles in. I have been “cruising the ‘net” looking at blog sites and web sites urging me to register and join them. Blogher, Work it, Mom, Mom Salon – all I have to do is create a profile and wittily describe myself and then I can “chat” with women from all over – the neonatal nurse in Canton, Ohio, the free-lance writer in Savannah or the professional blogger in California. But, what I could really use is eye contact with another human, real time, to chat about politics, the writer’s strike or Sayer’s rough morning.

“The Geography of Bliss: One Grump’s Search for the Happiest Places in the World” by Eric Weiner sounds like a great book that asks “Is there a culture of happiness?” Weiner found that people are happiest where they share close community ties. Spending time with real people, in real time.

I think its the midlife part of me that insists that I can and should find time to be part of on-line communities AND be a part of my own community. The time I spend in a virtual community could be spent in a real community –digging soil in a community garden or tutoring a non-English speaker. Maybe the solution is to do some of both. For the rest of today, anyway, I’m taking a “link break.”

Resources for the Different Nester

One goal for this blog is to create a blogroll of relevant blogs that I think Different Nesters would enjoy. I'm quite overwhelmed by the number of blogs just within the special needs parenting realm. To tell the truth, I'm getting a blogosphere headache! So if my blog roll is a product, the process is exploring blogs and ferreting out a few at a time to feature as I go along. Here are a few special needs parenting resources:

"When a Child Outgrows the Safety Net" by Lisa Romeo is a great article about the feelings a mom has as her special needs child enters adolescence. The article is adopted from an essay Lisa Romeo wrote that opens up a recently published anthology, Special Gifts: Women Writers on the Heartache, Happiness and Hope of Raising a Special Needs Child. I haven't read the book yet, but will soon and report back. It has gotten some positive reviews on Amazon. Lisa also has a blog about her experiences writing, working and mothering.

Mothers with Attitude is a web site written and edited by Terri Mauro, who has two adopted special-needs kids from Russia who are now teenagers. Terri is theParenting Special Needs guide for About.com, and the author of The Everything Parent’s Guide to Sensory Integration Disorder. This web site is is affirmative of our strengths and skills and even features - gasp - humor. Terri also has a blog, Parenting isn't pretty----but it sure is good for a laugh that details her experience raising her teens.

Miriam Mason is one of my autism mom group buddies who writes articles for Associated Content. Her article "Intuition versus pediatrician: trusting yourself" is an excellent article to share with parents whose guts tell them their child is developing differently, but are urged by experts not to worry. I for one have been there; when Sayer was not standing on his own at a year we were urged by our pediatrician to "wait and see" but by 14 months we insisted on physical therapy and by 18 months he was walking. PT was our "gateway therapy" as it turned out, and we're glad we didn't wait and see any longer.

I hope these links lead to inspiration. Next up, some links related to our lives as women in midlife.

Coping over time; coping among friends

A great group of moms that I am getting to know are members of the Special Education Parent, Teacher and Student Association (SEPTSA) here in Clark County. These women are mainly my age or older, with children who are in their teens or early adulthood. I feel so at ease with these women, as we discuss coping strategies and share places in the community that are particularly tolerant of our children. These midlife mothers, which I’ll call “SEPTSA moms” have a sense of acceptance and comfort with themselves and their families that I respect and strive for.

The article “Coping over time: the parents of children with autism” (Gray, D.E., Journal of Intellectual Research, vol 50:970-976) is a longitudinal study of parental coping with autism.
The study looked at how 20 families cope with raising an autistic child over time, through the use of two sets of in-depth interviews. Initial interviews took place at a treatment center for autism, and follow up interviews were conducted 8-10 years later. The researchers found that parental coping techniques changed over time. Parents in the later study used a fewer number of service providers and therapeutic interventions, and relied more heavily on emotion-focused means of coping such as social support, religion and a greater appreciation of their child’s positive qualities.

The researchers theorize that one reason for such a shift is that parents of younger children with autism have high expectations that their child would make significant progress toward “normality.” However, several years down the line when these expectations are not met, such parents turn to strategies to cope with the permanency of their child’s disability.

Gray’s study sheds light on why I feel more akin to the SEPTSA moms than some of the younger moms that I come in contact with through other groups. THE SEPTSA moms are more oriented towards the long haul, not the quick fix; the “what now?” not the "why my child?” The SEPTSA moms accept their kid’s quirks and seek ways to allow their children to experience joy in their own way. For example, Sayer is into banging on windows, walls, and tables. We have taught him to bang a drum or the floor instead. Even better, at the last SEPTSA meeting, a mom told us about a monthly drumming circle her own son enjoys that can provide Sayer with a chance to drum to his hearts content, with fellow drummers.

One positive thing about midlife is that is gives you some perspective. I can absorb the energy and enthusiasm from younger moms, without their feelings of urgency. I'm further along the "special needs" learning curve and that's a good thing.

Zen and the art of chore chart maintenance

I've heard that the age of eight is a mini "tween"year, when kids are between being little ones and big ones. Sayer is becoming more and more of a "big kid" before our eyes, but our home's "infrastructure" hasn't kept up. Our main new year's resolution involving Sayer is that we usher in his transition from "little boy" to "big kid."

Step One: Say farewell (no more saying "bye-bye," that's little boy talk) to Sayer's train table, wooden train tracks, ineffective toy storage unit and adorable, painted -in-Mexico dragon toddler table and matching chairs. Off they go to the local YWCA, to make room in Sayer's room for a desk, effective storage units from IKEA, and most anticipated by Sayer, our all-in-one foose ball, pool ball ,air hockey table.

Step Two: Increase chores and responsibilities. Since our long-term goal is for Sayer to live independently, we believe that he should learn to be a contributing member of our household. But that isn't as simple as putting up a list of chores and expecting Sayer to do them. We need a "tool" to help. Unfortunately, for parents of kids with disabilities, the tag line for our tools is "Operator needed - requires parental time and brain cells to set up, implement and evaluate."

However, I recently bought I Did My Chores, a tracking chart and system that requires planning and thought to set up initially, but after that it's easy to set up each day. There are downloads on the web site that allow you to customize the chores to your child. It's helpful for all of us for see what Sayer needs to and should be doing. Sayer is able to get the reward thing, although more for smaller items than a big reward down the road. The challenging part for me (or as Sayer would say, "that's a tricky one' ) is that if he doesn't do a chore I can't nag, I just have to let it go. No chore, not token, just breathe.

Happy New Year - here's to growing up!