Inclusion - it's not just for kids....

My last post, Can there be perils to over inclusion??, talked about inclusion and exclusion of our kids with special needs. But, it's not just our kids but also us who experience inclusion or exclusion among peers.

As other moms take for granted the accomplishment's of their children, we marvel at the small, often unnoticed strides of our own. When our kids "lose it" we never know if we will receive understanding glances and an offer to help, or disapproving stares. Often, we can feel on the side lines and on the margins.

The author of the blog wrongshoes.com - a mother with Asperger's syndrome writes about feeling on the outside of a group of moms in Open letter to the chatty moms at the gymastics class. I found it a wonderfully written snap shot, and I imagine we have all been there at one time or another - perhaps over and over!

I know that for me,sometimes I find comfort and "normalcy" when I spend time with parents of "ye 'ole typical kids," while at other times I feel like an impostor. For example, last night I went to a parent meeting for Jacob's high school magnet program, directly from dealing with a tantrum of Sayer's. Partly it was a relief to debate the merits of science internships versus engineering summer college programs, but I also felt somewhat detached. Part of me just wanted a martini, to be honest. Luckily, I had one after with a fellow magnet mom (brilliant idea "DW"!).

I guess I'm still dealing with that feeling of bifurcation I talked about in my Why does everything have to be so bifurcated?? post last May. Wow, that was like, six months ago, and I still haven't resolved my ambivalence! Why is it that definitive answers came so much easier when we were in our twenties and thirties?

Feeling included? Excluded? Please share all.

Social Support: Do you get it via drinks or e-mail?

How do you get social support to keep going? How much is from face-to-face lunches,coffee dates or drinks with friends? How much is through blogs such as this, e-mail exchanges and list-servs?

For moms of children with special needs it is often easier to interact through e-mail messages or blog comments than to meet up with people in person. However, I don't think that electronic relationships can match those up close and personal.

When I answered a questionnaire for my recent high school reunion, I was asked to name my favorite activity. Jeez - it was hard to pick one. I responded something to the effect of "There are so many, like hiking with my family, and going to see movies, but having martinis with friends is right there at the top."

What strikes me now is that as I was answering this question it never occurred to me to include "reading and responding to blogs" or "watching You Tube videos e-mailed to me by friends." Now that I am back home, in my telecommuting bubble, there are days when I don't speak to another human for hours on end, or even until Jacob comes home from school. Yet I usually have dozens of e-mail exchanges.

And while Sayer has come a tremendous way in his communication skills, our exchanges are quite limited and often repetitive. We can discuss what he wants in his lunch box and if he liked music in school but our conversations are well, pretty basic.

For those of us who have children with special needs, working at home can't be matched for flexability. It is good for me to be there in the morning to get Sayer off to school , as in "there" and not in a preoccupied hurry. Sayer is more relaxed when I am relaxed. But, I need to find more opportunities for human contact on a daily basis. This probably includes the dreaded activity of networking (why does that term suck the life blood out of social interaction?). Any ideas?

One Mother's Voice of Experience

A fellow blogger, Allison, at WomanBloom send me this essay "Post partum Blues Plus 20: A Voice of Autism," written by Claire Luna." Claire writes about raising her son with Asperger's Syndrome, with the perspective gained from twenty years down the road. I think you will find her story interesting and perhaps a bit familiar.

Claire's essay is one of many in The Voices of Autism, an anthology published by LaChance publishing. This publisher is connected to the non-profit organization The Healing Project, which is devoted to supporting persons with chronic illness and their caregivers. The Healing Project web site is a good starting point for caregivers of all kinds, including those in the special sandwich generation.

A Different Sandwich Generation: Caring for Children with Disabilities AND Aging Parents

The "sandwich generation" with a special needs twist. Are you a member of the club [if I was REALLY clever I'd have a picture of a club sandwich here]?

My friend "J" is has two teen/young adult children on the autism spectrum at home, along with her elderly mother who has dementia. "J" told me that she has run into women she knows from autism support groups at support groups for children of parents with Alzheimer's and dementia. Clearly, "J" is not alone. How she and others do it, I don't know. To try and find out, I searched on the internet for information on and tips for caring for special needs children while also caring for aging parents.

I found plenty of information about the impact of caring for both children and aging parents while working, including research by Portland State University researchers Margaret B. Neal and Leslie B. Hammer.

There are many articles and blog posts on finding care for aging parents, in general, such as A Place for Mom in Midlife's A Trip.

And there are a number of scary and depressing articles on the plight of aging parents of children with disabilities, who are worried about how their children will fare once they are gone.

AND some articles on the impact of multiple roles on the well-being of midlife women . Overall, it seems that the more roles a woman has, the greater her overall stress caused by such role strain. On the plus side, strong social support can mitigate some of that stress.

But information specifically on the stresses a being a"sandwich" parent who is caring for children with disabilities - I didn't find, well, anything. That isn't to say it isn't out there. Help, anyone?

I would like to hear from those of you who are experiencing this phenomenon. How does it impact you and your family? Have you found any resources to help? Have you discovered any "plusses" to this situation? I'd also appreciate any web links on information on this topic. Hopefully we can start a resource list on this blog, maybe called A Different Sandwich Generation?

From SoHo to So Tired

I did a lot of planning before my recent trip to the East coast, but I didn’t give much thought to coming back home. As Wallace says in Wallace and Gromit’s “The Wrong Trousers,” it’s been a touch painful on the re-entry.

Clearly, there are dos and don'ts for readjusting to life after a solo vacation. I found these out the hard way. Remember Goofus and Gallant in Highlights Magazine? [I can still remember the smell of those doctor’s waiting rooms while I read Goofus and Gallant’s Do’s and Don’ts, along with “What’s wrong with this picture?” But, I digress]. Goofus, the rude rascal, did the "do nots" while Gallant, that polite, thoughtful boy, was the "do" guy.

Below are some “dos” and “don’ts” for moms coming back home to their families after a trip away, particularly moms who are of a “certain age” and have children with special needs. As you can guess, I have been a bit of a Goofus.

DO: Arrive home early in the day so you can’t get your bearings and rest. Don’t even think about checking your e-mail or reading through all those school memos and notes. That way you can be bright and cheerful when the kids come home from school.

DON’T: Arrive home on a flight that lands at 5:00 pm, which is really 8:00 p.m. for your body, and try to listen eagerly to all the news from home while fighting sheer exhaustion. Check e-mails, school notes and so on, right away, not the next day like you told yourself you would do. Achieve maximum overload.

DO: Recognize that you are not 24 any more and that getting used to a new routine will take time and energy. Realize that you will need to readjust to the baseline noise of a household with kids.

DON’T: Beat yourself up about wandering around in a daze the day after you get back and not writing a blog post as planned.

DO: Be sure that you do not schedule any stressful meetings within 48 hours of returning home. Give yourself ample time to prepare for any such meeting.

DON’T: Agree to attend an IEP meeting two days after getting back, especially when you receive the IEP draft the day before.

DO: Remember, if you have a child with a disability, that they will be excited to see you and may trot out their “special behaviors” in honor of your return.

DON’T: Expect said child to be independent and well-behaved for you as he was, apparently, during your absence. Do not take it personally when your older son tells you “So-and-so was an angel with Dad.”

DON’T: Dwell too much on those vacation days of waking up late, enjoying old friends and family, eating out constantly, and rediscovering your shopping gene.

DO: Be grateful for the friends, family, fresh air and great coffee of home.

Cindy's Caregiver Story: Creating University Linkages

Here is a caregiver story from a reader in Canada:

Hi there Moms,

Ahhh, the eternal search for caregivers. Drives me bananas, and I've been at it for 15 years. However, I am a believer in possibilities and not one to make an ado about the effort needed to drive forth change. I can fling paint when my job is done.

I used to have a 'roster' of seven women, most of whom were students at varying stages of their post secondary education. Now I am down to two gals. I, too, have experienced the chicken and egg scenario...too burned out to train new ones. Advertising in the paper was a dead end as it brought in ALL kinds of unique people, none with the qualifications which were advertised. Other parents have been finding it increasingly hard to find caregivers too. So, at a community all-supports meeting the issue was addressed. Even the services and associations which were mandated to 'find' care workers, have not been successful. (Four-month waits just don't cut it for most families.)

We decided that finding a 'home' for a Community Caregiver Service (screening, training and matching) would support families who were looking after children, youth or their adult parents with caregiving. A one-stop shop idea formed. We envisioned something which would serve multiple caregiver needs, provide volunteer and employment opportunities for students, part-time workers and professionally trained carers, increase quality of care with standard training for all, provide for multiple financial situations (free, funded contracts, parent contribution)all centralized through a Service Coordinator. Community support organizations would pay to use the service for their client families, training programs could offer their services for a fee, community businesses could offer 'perks' for parents and care givers alike. A One-Stop Shop.

I took our brainstorming results, pulled together a proposal and budget...(in my 'spare' time) and phoned the executive director of the most logical existing choice for a 'home' for this service. I wanted a meeting, but there were changes happening in the service and timing was off. I was sent away to get numbers of people in the community and a budget. That was a year ago. Along with the numbers of families whose child requires one-on-one care I ALSO followed up on a hunch that and placed an announcement on several websites of our local university (I call it, CommUniversity Connections - connecting student volunteers with families who need support for their child.)

I now have a list of 35 names of university students who are desperate to obtain a required 70 hours of volunteer work in their area in order to apply for the Masters programs in physio, speech, and occupational therapies. (Was it the Dalai lama that said we need to realize that we are interdependent?) This list will offer a 'jump-start' to the 'home' of a Community Caregiver Service. While using university students has its down side as they inevitably move on, it is one RENEWABLE SOURCE of caregivers.(You want to make sure they send their resume, three letters of recommendation, current First Aid and CPR, and a current Criminal Records Check.)

The last piece would be the funding of a Coordinator and administrative support person to screen, interview and do the matching of students to families - a two-year grant may just fit the bill to get a service like this on its legs and off to a good start.I am facing the rest of my life with the prospect of having to find, train and employ caregivers. My motivation is definitely personal in seeking a source of caregivers through the establishment of a new community service. But when I think of the enormous relief something like this will afford all families, the responsibility can shift to a place where interdependence is recognized and modeled. And, everyone can live happily ever after. Well, that may be a bit of a stretch. But I DO plan on carrying on with my personal dreams – become a professional development presenter on ionclusive education and the best …fling paint!

Cheers,Cindy

Dealing with Difficult Behaviors - Yours, Mine and Ours

One of the things I dread, no I mean enjoy, most about blogging are the seemingly endless opportunities to learn new technologies and ways of thinking. At the same time I can use the writing and research skills I am more confident about. There is comfort in the feeling of competence, but the line between competence and complacency can be fuzzy. Blogging keeps me on my toes.

Parenting through mid life can also bolster feelings of competence, but there’s danger in thinking you have little left to learn. Although I try to attend training sessions and workshops focused on the nuts and bolts of systems and programs , until last night it had been quite a while since I went to a talk that was more touchy-feely than fact-filled.

I heard Dr. David Pitonyak speak to the Special Education Parent, Student, Teachers Association about Dealing with Difficult Behaviors. Dr. Pitonyak regularly visits Clark County to provide training and consulting to families and organizations regarding disability support issues.

I found Dr. Pitonyak's perspective refreshing, and his words are helping me to view Sayer’s “challenging behaviors” in a new light. I’m not going to rehash his whole lecture but I do want to share two “take aways” [do I like this term or despise it? I’m still not sure!]:

Dr. Pitonyak's main point is that difficult behaviors result from unmet needs. First, when trying to understand and respond to a child’s behavior, think about this three legged-stool of issues:

REST

STRESS

SELF-CONFIDENCE

Dr. Pitonyak's belief is that most challenging behaviors result from a dysregulation of one of more of these stool legs. Often problems in one area feed off of or cause problems in another area. If you are tired, your self-confidence is weakened; if you are stressed out, you don’t sleep as well, and so on.

This idea has reassured me that Dan and I are going some things right, although there is room for improvement. I have been making an extra effort to boost Sayer’s self-confidence; i.e. “You did a great job at the library.” I’m also thinking about the link between the lack of rest and his anxiety (maybe he’s still getting used to daylight savings time ). We adults also have to contend with the three-legged stool. When I am tired from Sayer getting up early due to anxiety, I have less energy to boost his self-confidence, which would lessen his anxiety.

Dr. Pitonyak also emphasizes that persons with disabilities need to feel useful and included. Being of service,not just being the one served, is essential for self-confidence. Dan grasped that instinctively last week when he let Sayer choose a bag of ravioli at the grocery store, even though we already have three bags of the same item in the freezer. And we are on the right track since Sayer loves to help with laundry – although he can be overzealous and would wash his clothes daily if he could. We’re still working on the concept that dirty clothes must accumulate!

The second point to share is that we as parents need to appreciate the value of joy in our child’s lives. Too often, we view every event as a “’teaching moment” but don’t make enough of an effort to have fun with our children. Dr. Pitonyak's belief is that persons with disabilities are too often isolated and miss having friends. Our family is fortunate because Sayer does have some friends and maybe just as important, he perceives that he has friends.

However, Sayer is unable to pick up the phone or arrange a play date on the school bus, so it is up to Dan and me to make social moments happen. Too often, making social plans shifts to the bottom of the pile. Hearing David speak has recharged my commitment to broadening Sayer’s fun profile. Luckily, we can tap into organized social activities organized by parents, such as Friends on the Spectrum outings.

Dr. Pitonyak's web site has great information and resources; I encourage you to explore. His “7 Questions to guide the development of a support plan” link offers a good summary of his talk last night. And don’t forget to make room for some fun this week.

Of Stepford Wives, spring break, and blogrolls

The Stepford Wives movie, the 1975 version, is a camp classic. I was 15 when it first came out, and it left quite the impression. Although I am having a harder and harder time remembering names (the whole midlife brain in flux issue), I can vividly recall one malfunctioning wife uttering over and over “I’ll just die if I don’t get that recipe.” I can still see her arms robotically flailing about.

I feel like Stepford Mom on this, our spring break with an arm break. I find myself uttering the same thing over and over again; my brain is on the repeat cycle. Each night near bed time, Sayer says, oh say, five or ten times: “Go to bed when it is dark, not cloudy?” and without thinking I say in an increasingly robotic tone “Yes, bed time is at 8:00 o’clock; it will be dark then.” Again. And again. And again.

Spring break, winter break, summer – those times when our child’s sharply scheduled life becomes undone. Luckily, Sayer got a new totally waterproof cast today, so he can go swimming. And we are counting the days until school starts again.

Until then, this blog thing has been a personal godsend. I am now making connections and getting some synergy going. More and more folks I don’t even know in “real time” are looking at my blog – hurrah! I have discovered that other bloggers are putting me on their Blogrolls, which are lists of blogs they recommend to their own readers.

I am so grateful to these bloggers and am starting a Blogroll of my own. My blogroll list blogs of midlife women; some of these women have children with disabilities, some don’t. And they have their own viewpoints and opinions, which I may or may not share (I’ll never tell!).

I invite you to check out the blogs of women like Jane Gassner, whose ByJane blog offers great information and insight for all women in midlife. She is working to create an online Midlife Bloggers network. I am also on the blogroll of the Awalkabout’s weblog, written by a family attorney who is the mother of three special needs children. Her blogroll includes a number of blogs written by parents of children with autism. I also invite you to check out Rhea’s The Boomer Chronicles blog– in which “a 40-something boomer examines midlife crisis, ennui in America, and other compelling ideas.” I will be adding other blogs from time to time.

And if you still need a lift, rent The Stepford Wives. Nothing against Nicole Kidman, but see the original. It’s a hoot

We are the Accidental Experts

I did not embark on parenthood with the idea of amassing considerable knowledge about creating picture schedules, identifying sensory triggers to prevent melt downs, writing social skills IEP goals, or ways to encourage language. But now I know all these things plus much more. Fifteen years ago I wasn’t sure what occupational therapy was (something to help stroke victims?) yet today I am an accidental expert.

Recently, I spent a few minutes with the two-year grand son of a friend, and his mother. Both mom and grandma were baffled by his behaviors, but I could tell right away that he has sensory dysfunction issues and is trying gallantly to get the input he needs. When did I learn that a toddler who insists on dipping his fingers into goopy lotions needs that input; needs to finger paint with shaving cream or pudding? Years of reading books, observing Sayer’s sensory therapy, and being around other children with disabilities has given me expertise I hardly realized I have.

I have also become an expert on accessing systems. I have ideas on how to ask for more interventions than those initially offered to this boy. I can suggest that more than one adult attend each evaluation and therapy session to help absorb all the information. I know where the best school based early-intervention programs are, and are not. I am full of advice!!

My friend “P” recently encountered a mother of a child with autism who was having a tantrum in front of a grocery store. Although she didn’t know them, without hesitation she stopped and helped both the mom and child work through the melt down. “P” was able, on the fly, to aide this family by applying what she has learned about “difficult moments” with her own son. “P” felt good about being able to provide information and comfort; she, too, is an accidental expert.

When we moms were "newbies" to the world of special needs, it was our turn to be perplexed by our child’s behavior, stressed by all we needed to do to manage our child's disability or health challenges, and overloaded by information - both that we sought and that was thrown our way. I know that our family is forever grateful for early hand holding of Sayer’s therapists, teachers and other parents; hopefully your family has a similar gratitude list.

Now, as we have absorbed some hard-earned wisdom, we should all acknowledge our own expertise. And perhaps it is our turn to “pay it forward” and help other parents. Have you found yourself helping other parents or wondering if you should? Is our accidental expertise a blessing? A burden? Both? I’d love to know what others think.

But wait, Mom is still working on those Independent Living Skills

Ah, those Independent Living Skills our kids need to be self-sufficient. There is no surer way to bring on anxiety than to look at the list of skills that our children with special needs should master before they move out of the house and into a supported living situation.

At the Families Transition Series meeting I attended last week, we received a hand-out of Independent Living Skills that children need to work on to make the transition from living at home to living on their own (with supports). When we received this list, my friend sitting next to me commented that her daughter in college still has not mastered the entire list. It’s a useful list not only for children with disabilities, but also for all adolescents and young adults.

Taking a closer look at the list today, I see that there are a few items that I haven’t mastered yet, either – at least not all the time. I have read that for women, going through midlife is somewhat similar to experiencing adolescence, so maybe we moms need a refresher course on Independent Living Skills, too.

So, here is an annotated sampling of the items on the Independent Living Skills handout we received, with comments on how both Sayer and I are doing on building these skills.

INDEPENDENT LIVING SKILLS

Personal Care:
Gets adequate sleep

- Sayer aces this one; thank you gods of somnia.

Eats nutritious meals

- Carol needs to work on this (what food group is a Luna bar?).

Personal Safety
Says “NO” to others when appropriate

- This is an “emerging” skill for Sayer.

Knows five people to contact for help

-Carol can do this; you gotta have friends .

Social Skills
Leaves other people’s things alone

- Sayer knows to leave his brother’s Nintendo DS alone (or else, but that's another story).

Recognize other people’s needs and makes room for them

- Carol does this, sometimes too much!

Meal Preparation
Shops for food

- Sayer helps Dad with this; exposure to Trader Joe’ is a good first step.

Cooks simple meals

Carol can do this, emphasis on simple.

Allowances & Money Management
Budgets money

-Sayer is just now working on coin recognition, a building block.

Comparison shops

-Carol does this on-line - who knew this was a valuable skill!

Emotional Maturity
Recognizes other people’s feelings

- This is one of Sayer’s goals at school; he’s got “sad” and "mad" down pat.

Knows how to nurture self

- Carol knows how; implementation is sporadic.

Expression of Anger
Recognize signs of anger in self before “blowing up”

- Sayer is using a “Five-point” scale to identify his escalating emotions.

Knows how to express anger constructively

- Again, Carol knows how, implementation is sporadic.

For a full copy of the list without snarky comments, contact Darla Helt, Coordinator, at the Clark County Parent Coalition. And try to fit in a bubble bath - you'll get points for personal care AND nurturing yourself!

Person-Centered-Planning Resources

The Family Panel on Transition panel last Tuesday night featured a family who went through a Person-Centered-Planning process for (and with) their daughter. It also included this student's transition teacher. The person-centered-planning process featured the student and her family, the student's teacher and also persons involved in various aspects of the student's life, such as her church and swim team. One thing that really struck me about this process was that the person-centered plan became the backbone of the student's IEP. The teacher noted that rather than spending two hours at her computer writing an IEP, she joined family and community members in brainstorming a transition plan together.

Because the planning process was led by an outside facilitator (another special education staff member), the teacher was able to take off her "instructor" hat and join the others in thinking both in and outside the box. The teacher noted that while the Person-Centered-Planning process took some time, the plan that was developed ended up "driving" the student's IEP, which took relatively little time to develop.

A great web site to learn about family-centered-planning is the Person Centered Planning Education Site sponsored by the Cornell University Employment and Disability Institute. The site features free online courses on the person-centered planning process, along with readings, links and downloadable resources.

In the "good timing department,the Multnomah Parent Action Committee, a member organization of the Family Action Coalition Team (FACT), is sponsoring "Creating a Plan for Your Child: A Person Centered Planning Workshop" in Gresham on March 8th. The Events link of FACT's web site lists details for the workshop. Please note that the workshop is free but registration is required and space is limited. The Multnomah Parent Action Committee is also sponsoring the same workshop in Portland later this month, but that event is already full. If you'd like to go to the one in Gresham you may want to register sooner rather than later.

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.

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.”

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.